Rich had a very nice Christmas. Visits from grand babies and very special nephews and nieces bearing home made cookies and all manner of goodies and treats. So many friends called and visited him. As always his brother cheers him up every time. As you would know, his nurses all love him.
This was our first Christmas in 16 years that we weren't completely together. The good news is that being in the hospital has enabled him to get some sleep thanks to the dextrose drip. He would be a bit happier if people remembered to turn out the lights when they leave the room at 2 am so he could go back to sleep, but he's getting really good at maneuvering that double pump IV pole so he can get up and do that himself. And I must say again, that in the several years he's been a guest at hospital hilton, the food has never been better. Kudos to Dietary!
I've been taking the laptop in everyday and we watch our favorite Christmas movies. "Love Actually" is our favorite, and of course we had to do another showing of the "Princess Bride". We're trying to decide if we're hanging on the Cliffs of Insanity, maneuvering the Fire Swamp or hanging out in the Pit of Despair. That movie never fails to lift his spirits--thank you, Rob Reiner. We watched one of the Northern Exposure Christmas episodes, because Christmas without the Raven is just not Christmas.
Every single day Rich amazes me in a new way. I spent six hours in that bed with him, and when I got up, I thought someone had stuck a knife in my back, both hips and my right knee. Apparently lack of sleep can make any bed seem comfortable, and I need some Arthritis Pain Relief.
I went to our annual Christmas Eve party hosted by the lovely and incomparable Christy and Denny. I went with great trepidation, and it was only Rich's insistence and my GPS that got me there (I would get lost in a bathtub if there weren't a faucet at one end). It didn't feel right being there without him. Not to mention that he always plays Santa Claus and passes out all the gifts. Big hugs from Buddy and Michael and I felt like I could manage. Once Christopher, Alicia, Eric, Andie and Kaylee got there, I started to believe I could get through the evening without crying. I kept pretending that Rich was just in the other room being his social butterfly self. Every time I heard someone laugh I could believe that Rich had inspired it. Hey. It worked.
Christmas day didn't feel like anything at all. I've been sleeping downstairs on the couch so I won't see the Christmas tree. I strongly recommend that you keep the TV on Turner Classic Movie channel for just the right level of distraction. And it's good to sleep to because there are no commercials to startle you awake when their decibel level rises. Not sure why TCM thought Ben Hur is a Christmas movie (I think Easter) but at least it's not one of those Bing Crosby in a dog collar tear jerkers.
I managed to get myself together and out the door, and in honor of Rich I decided to stop at the carwash because I know how much he hates it when the car is dirty and I drive through farm country Monday through Friday. This is about the time someone should have had a video camera going because in retrospect I must believe it was hysterical.
The down side of being married for 15 years to a wonderful man is that you lose a skill set. Before Rich I took care of my house, my vehicle, my finances, my dog and myself. So it's been 15 years since I washed the car anywhere but in my drive way in the summertime. One more reminder that technology is leaving me in the dust. I spent a good 9 minutes trying to figure out the control board, and since I didn't have a five year old with me, I was screwed. I could not find any opening on this 3 x 5 foot control panel that accepted legal tender printed by Uncle Sam. It seemed important to find such a slot because Rich would NOT be happy if I used a credit card in such a non-secure transaction. Finally I opted for the credit card. Ten dollars. No instructions provided, and yes, yes, I fully understand what an idiot I appear to be, but in my defense, if you handed someone an iPhone when all they've ever used is a rotary phone.... My last encounter with an automated car wash was entering the bay just right and some lovely mechanical mechanism takes over and ever so slowly guides your car through it's bath. This did not happen. Nothing happened except a powerful spray made one vertical line of clean on my car, then stopped and I had to figure out how to correct the situation or get the hell out of there. I'm not sure why, but this situation frustrated me to tears. I drove around, pulled into a "manual" bay and dumped more money into the wall and attempted to wash the car myself, wearing my best winter coat. It wasn't pretty, but I'm sure it was funny to watch and a good time was had by all.
I arrived at the hospital just as Santa's two favorite elves were arriving. Two of this country's brightest legal minds were fully regaled in the finest elf outfits I've ever seen, complete with curled pointy shoes, pointy hats, pointy ears, gold edging and bells that were jingling from I'm not sure where. Everyone we passed on our way to the fourth floor were thrilled and delighted at the sight of them. They even brought treats for the nurses.
I wish you could have seen Rich's face when he saw those two walk into his room. I am NEVER fast enough with the camera. Rich had so many gifts to open (me as well) I could tell that no amount of protest could convince anyone that he was not delighted. It was a lovely visit.
Shortly after the elves left, there was a timid knock on the door and in came Rich's Endo doctor. She looked especially nice, with a hint of Christmas about her, visibly in spite of her lab coat. She had a foil covered plate in hand, topped with an outrageously gorgeous bow. She is blond, petite and she has a Rumanian accent. I know it is Rumanian because I asked her. I had been unable to place it myself so I asked and then learned that she was educated in England so no wonder I couldn't place a British tinged Rumanian accent. So picture her standing there and in her soft voice saying...
"I hope this is not inappropriate, but I like to bake and I brought you my family's traditional Yule log cake. I made it myself from my family's recipe very far back. Don't tell your doctor."
It was the first time she had ever hinted at joking with us. We were overcome. She and I chatted a bit about our mutual love for baking and then she wished us a Merry Christmas and apologized that she hadn't been able to get him home for Christmas, and we thanked her hugely for all she's accomplished so far. She has the shyest smile I've ever seen, and she ducks her head a bit when it happens. She was almost out the door when she turned back to us and said...
"You're the reason I became a doctor."
She was gone. Rich and I just stared at each other in shock and awe and then we both dissolved into sobs and tears. Holy Yule cake, Batman, it's like she knew I have been praying for her and thanking her every day since Rich became her patient. When Rich's nurse came in and he told her about it, she was the most shocked of all. "Hell," she said, "we didn't know Dr C. had a soul."
I think that's what some people don't get about this blog. This is where I spew the pressure and insanity so I can be a loving supportive cheerleader, to Rich and his care providers. What I forget is that I spend one percent of my life on this blog, but it's 100% of what you know about me. My boss and co-workers chastise me repeatedly for being too nice to the patients and allowing them to abuse me while I jump through hoops for them. I'm no nicer or better than anyone, I'm just working for "points". Trying to earn coins for Rich. More importantly, I never know when I'm speaking to Elijah. And no, that's not a voice in the van, it's The Elijah, as in the Prophet Elijah. The Spirit of Yom Kippur. Check it out. I learned to "speak to everyone as if you're speaking to Elijah, and know he may be in disguise."
Most importantly I speak to Rich, and he seems to like me just fine.
Merry Christmas with many thanks for all the Love and support that is given constantly without our asking. Shalom.
Monday, December 26, 2011
Thursday, December 22, 2011
"I don't want a lot for Christmas...."
Rich was admitted to the hospital 12-20-11. It took some fancy talking from his doctor, but she convinced him.
Over the weekend he had started throwing up, pain came on in the stomach and remained constant at 4 out of 10. Monday afternoon he started running a low grade fever off and on. The swelling in his lower legs was not improving. Tuesday morning we had an office visit with a new surgeon, recently from a huge medical center somewhere in Texas where he did nothing but liver and pancreatic surgery.
We got off to a rocky start. At check in they handed Rich a clipboard with many pages to fill out. He promptly handed it to me. I barely had to glance at it to realize that it was six pages of questions that I have answered far too many times for this hospital, it’s doctors, nurses, admission staff, labs, radiology, ad nauseum. Seriously, people, why the fuck did you spend money on computers? If the same name is on all of your paychecks, and/or rent…. Why can’t you network some information?!?! Then again, why bother. No matter how many times I fill out your paperwork and give you insurance cards to copy, you still can’t seem to bill our insurance correctly or get his med list straight.
Here’s a thought. The more times you enter the same info, the higher the odds an error will be made. I’m just saying.
Sitting there in the waiting room, I had to make a snap decision—do I risk more brain cells filling out the forms of futility, or do I bring some common sense to the party and bypass the frustration. Brain cells screamed for rescue.
I wrote across the top of the first page. “How unfortunate they have not given you access to hospital records. This could be a problem. Maybe you could call someone.”
Rich asked me why I wasn’t filling out the forms. I showed him what I had written and was immediately chastised. He said to me, “why do you have to be that way? Why can’t you just do what they want?”
Holy Knife-in-the-Back, Batman.
In a Nano-second every Voice from the Van had a screaming response. They flowed like this…
“Because swallowing unlimited amounts of bullshit causes pancreatic cancer.”
“Because I don’t get to lay back and let someone else fight my battles.”
“How ‘bout you shut up and go back to ignoring me.”
“Because I refuse to act like a sheep. Condoning evil is just as bad as Being evil, and the greatest tool of evil is stupidity.”
“If you had half a clue what cancer is like on THIS side of the partnership, you would not even ask that question.”
“Since you’re the only one they listen to, why don’t YOU fill out their forms, and sign them—Love, Rich.”
“Since they seem to get points for poking sticks in my cage, I think it’s only fair I get to growl at the stick.
“Because kissing ass doesn’t seem to be Gittin’ Er Done.”
I didn’t have any scrap paper to write them all down so these are just the responses I can remember.
I remained silently obedient. We get back to the exam room and after a bit the doctor comes in. After introductions he started asking Rich questions and Rich looked at me like I had missed the cue for my soliloquy. I didn’t know whether to laugh or run from the room screaming. I was somewhat impressed that the doctor appeared to sense that we were having an awkward moment.
Rich made a couple of attempts to relay information, but it was clear that his memory was fuzzy at best. Finally he told the doctor he would have to let me answer questions. After awhile I couldn’t help but feel comfortable with this doctor. A doctor without a God complex is rare enough, but a surgeon who is warm, reassuring and humble?!?!? And we got lucky TWICE.
We worked out a plan and I actually remembered what Hope feels like. I reassured Dr L. that “I really am a nice person, I’m just worn out right now.” He chuckled (I think Dr Mcgee told him I would say that) and told me I didn’t need to explain anything.
A couple hours later we saw the Endo Dr. She had labs back and results were not good. She didn’t like the way Rich looked, and he was running a fever, and she managed with effort to convince him to let her admit him. After an hour and a half of sitting in the main lobby, they found a bed for him and we got him settled in. The only reason we convinced him to be admitted was because Dr C had PROMISED him that they would start an IV drip and not wake him to take his blood sugars, and he would actually be able to sleep. The reality was…..
No one was available to insert a PIC line so they had to start an IV. THREE of them. Have I mentioned what a difficult Stick he is? Somewhere in the process he became tachycardic, not leveling off until he was in the 140s. At midnight he had to be transferred from the oncology floor to the cardiac floor because only those nurses can do cardiac IV meds. Then it was a matter of getting those orders, then administering the meds and getting him on a monitor. Yada, yada, yada. At 5:30 am the next morning, the staff turned out the lights and left his room. Breakfast arrived at 06:30.
Wednesday morning I went to work and between one thing and another and all the patients calling in sheer panic because they’re about to face a four day weekend without enough narcotics or erectile dysfunction meds to get them through it… It wasn’t until late morning that I had a chance to call him. A strange woman’s voice answered his bedside phone. I asked for Rich. She said, “oh..no…he’s not here.” What do you mean “he’s not here?” Nope. He’s gone. Maybe he went home.
I was speaking to housekeeping and they were getting the room ready for the next patient. I called the main hospital line and with my sweetest, ass-kissing voice I asked where the fuck my husband was. Over fifteen minutes I got transferred to five different people, on hold in between each, until the last time I was on hold I got to hear all of “Little Drummer Boy” before there was a click and then a dial tone.
When my boss took over and eventually got Rich on the phone I learned that he had been transferred to a cardiac floor. The rule is, if a patient is transferred, family is notified. Why? Because it is really shitty to walk into a room that is empty when you’re expecting to find your loved one. I have been called at 2 am to be notified of a room change. There were no missed calls, or voice mails on my phone. I’m just relieved that patient care has not been compromised by the hacking of 72 LPNs.
The doctors have decided to insert radioactive pellets into the tumors in his liver. Why am I cranky?
Two and a half years ago, when they biopsied the tumors in his liver they told us he had carcinoid cancer. Carcinoid tumors do not produce insulin. Ergo, killing non-insulin producing tumors isn’t going to correct the problem. Silly me. This week we’re informed that it’s not carcinoid cancer after all. IT’s regular ole’ run of the mill, insulin producing pancreatic cancer. The larger tumors are in his pancreas. They’re not going to inject pellets into those tumors. Why? I would tell you, but I’m not privy to that information either. Perhaps the answer is so obvious that my questions would be offensively ridiculous. Or. I am so stupid that any attempt to explain would waste crucial time and energy.
Whatever.
In the meantime, Dr C. is trying to get on top of the endo issues. Currently the delay is because the hospital cannot locate an insulin pump large enough for the dosing requirements. Weeks ago Dr Peiffer asked me if anyone had considered using an insulin pump to dispense octreotide to control insulin rather than insulin to control sugars. Like magic, Dr C had the same thought this weekend. Here is my stupid question Number Two. If you need to fill a TWO gallon bucket “over there”, and all you have is a one gallon bucket by the faucet. Uhmmm. Why don’t you pour water twice.?
Today Rich is increasingly short of breath. If the pellets don’t work, the next step is surgery, possibly removal of the pancreas. Wouldn’t the removal of a tumor stuffed pancreas have been better back at the get-go? I’m just saying.
I really am a nice person, I’m just worn out.
So Merry Christmas, Happy Holidays, Happy Hanukah, Blessed Solstice, Merry Kwanza, with respectful nods to Jehovah’s Witnesses, Muslims, Hindu, Buddhists, Atheists and Fellow Hitchhikers.
I had been hoping that this would be a nice Christmas for us. Our Last. Since the world is going to end 12-21-2012. I miss him. But then, I’ve been missing him for quite some time now.
Over the weekend he had started throwing up, pain came on in the stomach and remained constant at 4 out of 10. Monday afternoon he started running a low grade fever off and on. The swelling in his lower legs was not improving. Tuesday morning we had an office visit with a new surgeon, recently from a huge medical center somewhere in Texas where he did nothing but liver and pancreatic surgery.
We got off to a rocky start. At check in they handed Rich a clipboard with many pages to fill out. He promptly handed it to me. I barely had to glance at it to realize that it was six pages of questions that I have answered far too many times for this hospital, it’s doctors, nurses, admission staff, labs, radiology, ad nauseum. Seriously, people, why the fuck did you spend money on computers? If the same name is on all of your paychecks, and/or rent…. Why can’t you network some information?!?! Then again, why bother. No matter how many times I fill out your paperwork and give you insurance cards to copy, you still can’t seem to bill our insurance correctly or get his med list straight.
Here’s a thought. The more times you enter the same info, the higher the odds an error will be made. I’m just saying.
Sitting there in the waiting room, I had to make a snap decision—do I risk more brain cells filling out the forms of futility, or do I bring some common sense to the party and bypass the frustration. Brain cells screamed for rescue.
I wrote across the top of the first page. “How unfortunate they have not given you access to hospital records. This could be a problem. Maybe you could call someone.”
Rich asked me why I wasn’t filling out the forms. I showed him what I had written and was immediately chastised. He said to me, “why do you have to be that way? Why can’t you just do what they want?”
Holy Knife-in-the-Back, Batman.
In a Nano-second every Voice from the Van had a screaming response. They flowed like this…
“Because swallowing unlimited amounts of bullshit causes pancreatic cancer.”
“Because I don’t get to lay back and let someone else fight my battles.”
“How ‘bout you shut up and go back to ignoring me.”
“Because I refuse to act like a sheep. Condoning evil is just as bad as Being evil, and the greatest tool of evil is stupidity.”
“If you had half a clue what cancer is like on THIS side of the partnership, you would not even ask that question.”
“Since you’re the only one they listen to, why don’t YOU fill out their forms, and sign them—Love, Rich.”
“Since they seem to get points for poking sticks in my cage, I think it’s only fair I get to growl at the stick.
“Because kissing ass doesn’t seem to be Gittin’ Er Done.”
I didn’t have any scrap paper to write them all down so these are just the responses I can remember.
I remained silently obedient. We get back to the exam room and after a bit the doctor comes in. After introductions he started asking Rich questions and Rich looked at me like I had missed the cue for my soliloquy. I didn’t know whether to laugh or run from the room screaming. I was somewhat impressed that the doctor appeared to sense that we were having an awkward moment.
Rich made a couple of attempts to relay information, but it was clear that his memory was fuzzy at best. Finally he told the doctor he would have to let me answer questions. After awhile I couldn’t help but feel comfortable with this doctor. A doctor without a God complex is rare enough, but a surgeon who is warm, reassuring and humble?!?!? And we got lucky TWICE.
We worked out a plan and I actually remembered what Hope feels like. I reassured Dr L. that “I really am a nice person, I’m just worn out right now.” He chuckled (I think Dr Mcgee told him I would say that) and told me I didn’t need to explain anything.
A couple hours later we saw the Endo Dr. She had labs back and results were not good. She didn’t like the way Rich looked, and he was running a fever, and she managed with effort to convince him to let her admit him. After an hour and a half of sitting in the main lobby, they found a bed for him and we got him settled in. The only reason we convinced him to be admitted was because Dr C had PROMISED him that they would start an IV drip and not wake him to take his blood sugars, and he would actually be able to sleep. The reality was…..
No one was available to insert a PIC line so they had to start an IV. THREE of them. Have I mentioned what a difficult Stick he is? Somewhere in the process he became tachycardic, not leveling off until he was in the 140s. At midnight he had to be transferred from the oncology floor to the cardiac floor because only those nurses can do cardiac IV meds. Then it was a matter of getting those orders, then administering the meds and getting him on a monitor. Yada, yada, yada. At 5:30 am the next morning, the staff turned out the lights and left his room. Breakfast arrived at 06:30.
Wednesday morning I went to work and between one thing and another and all the patients calling in sheer panic because they’re about to face a four day weekend without enough narcotics or erectile dysfunction meds to get them through it… It wasn’t until late morning that I had a chance to call him. A strange woman’s voice answered his bedside phone. I asked for Rich. She said, “oh..no…he’s not here.” What do you mean “he’s not here?” Nope. He’s gone. Maybe he went home.
I was speaking to housekeeping and they were getting the room ready for the next patient. I called the main hospital line and with my sweetest, ass-kissing voice I asked where the fuck my husband was. Over fifteen minutes I got transferred to five different people, on hold in between each, until the last time I was on hold I got to hear all of “Little Drummer Boy” before there was a click and then a dial tone.
When my boss took over and eventually got Rich on the phone I learned that he had been transferred to a cardiac floor. The rule is, if a patient is transferred, family is notified. Why? Because it is really shitty to walk into a room that is empty when you’re expecting to find your loved one. I have been called at 2 am to be notified of a room change. There were no missed calls, or voice mails on my phone. I’m just relieved that patient care has not been compromised by the hacking of 72 LPNs.
The doctors have decided to insert radioactive pellets into the tumors in his liver. Why am I cranky?
Two and a half years ago, when they biopsied the tumors in his liver they told us he had carcinoid cancer. Carcinoid tumors do not produce insulin. Ergo, killing non-insulin producing tumors isn’t going to correct the problem. Silly me. This week we’re informed that it’s not carcinoid cancer after all. IT’s regular ole’ run of the mill, insulin producing pancreatic cancer. The larger tumors are in his pancreas. They’re not going to inject pellets into those tumors. Why? I would tell you, but I’m not privy to that information either. Perhaps the answer is so obvious that my questions would be offensively ridiculous. Or. I am so stupid that any attempt to explain would waste crucial time and energy.
Whatever.
In the meantime, Dr C. is trying to get on top of the endo issues. Currently the delay is because the hospital cannot locate an insulin pump large enough for the dosing requirements. Weeks ago Dr Peiffer asked me if anyone had considered using an insulin pump to dispense octreotide to control insulin rather than insulin to control sugars. Like magic, Dr C had the same thought this weekend. Here is my stupid question Number Two. If you need to fill a TWO gallon bucket “over there”, and all you have is a one gallon bucket by the faucet. Uhmmm. Why don’t you pour water twice.?
Today Rich is increasingly short of breath. If the pellets don’t work, the next step is surgery, possibly removal of the pancreas. Wouldn’t the removal of a tumor stuffed pancreas have been better back at the get-go? I’m just saying.
I really am a nice person, I’m just worn out.
So Merry Christmas, Happy Holidays, Happy Hanukah, Blessed Solstice, Merry Kwanza, with respectful nods to Jehovah’s Witnesses, Muslims, Hindu, Buddhists, Atheists and Fellow Hitchhikers.
I had been hoping that this would be a nice Christmas for us. Our Last. Since the world is going to end 12-21-2012. I miss him. But then, I’ve been missing him for quite some time now.
Thursday, December 8, 2011
Abandon Hope, All Who Enter Here
First. While I don’t dispute that Scrapper needs a med change and/or a muzzle, I’ve decided I’m not responsible for what results when the Voices get a hold of my Mac Book Pro. If doctor’s have no control over the care of their patients in the hospital….
Nevertheless, I am working on the anger. I’ve always believed that Anger is nothing more than a symptom, and it’s best to treat the cause rather than the symptom. In order to diagnose the cause of anger I make myself the defense attorney. It gives one a different perspective, broadens understanding and fosters forgiveness.
I have spent the past few days building a major defense on the incorrect dosing of Rich’s diazoxide.
After all, your Honor, the defendants are only human, not to mention overworked, and let us not forget that we only have the victim’s word that he was started on the bottom line of the dropper and never received more than one full dropper. Let us not forget that he was severely sleep deprived AND hypoglycemic—hardly a reliable witness that would hold up under cross-examination. It seems obvious here that the real question is “Where was the Wife?” It’s hard to credit any true concern when she was seldom at his bedside Monday through Friday, and never once questioned what the nursing staff was doing or giving. Why wasn’t the Wife demanding to see his med list? Requiring staff to demonstrate their dosing methods and calculations? Ultimately, isn’t the Wife responsible for his care? If she chooses to put her job and fiscal responsibilities above her husband’s care she can hardly expect others to cover for her neglect.
Thank you, your Honor. I rest my case.
At which point I had a three hour cry that ended around 9 am this morning. Not convenient, but necessary.
Now that my anger has evolved into guilt I can move on. Not that I ever intended to cause anyone any grief over this. I’m not stupid. No matter how high I might jump ugly, the most that would happen is that one or more nurses would get written up, and that is not what I want and NOT the way to prevent this from happening in the future.
The real problem here is that people with no concept of patient care are making the decisions about patient care, i.e. staffing. These decision makers will NEVER experience the results of their decisions, and I know this from experience, because if they or one of their family members is ever a patient, the Ts will be crossed and the I’s will be dotted, and staff will work their asses off and shit through their ribs to make sure Life is Perfect for them. I know this because I have witnessed this phenomenon first hand, more than once.
It is much the same as Congress determining our health care when they never have to experience it for themselves because they have their own “special healthcare”. La-de-da, la-de-da.
Second to the guilt, I’ve discovered that the cause of my anger is feeling betrayed and abandoned. Not to say that those feelings are reasonable or justified, but thank the goddess, feelings don’t have to be reasonable or justified. They just ARE.
To even attempt to tell you what life with cancer is like is just plain ignorant. Either you already have the relationship, in which case I can add nothing to your knowledge, or you don’t have the relationship , in which case nothing I say can create a whisper of the image for you.
I WILL tell you that fighting cancer is hard enough without getting hit from behind by the people that you trust to have your back. I look up to RNs the way an apprentice looks up to the master craftsman. The RNs I’ve worked with have been my best teachers and I love them like family. They set an example of what a nurse should be. So whenever Rich was in their care, I stepped back with trust and respect. I knew they were caring for him the way I would care for their husband. I was trained to check every dose three times before giving it. “You do not blindly trust anyone to determine the dose you give. It is on you. You follow the doctor’s orders and you do the math and YOU are responsible.” That was the mantra my nursing instructors drilled into my brain. I live by it.
I happen to love White Stripes. One of their songs has become a terminal loop in my brain...."NURSE" Check it out.
My anger is the symptom of feeling betrayed. And scared. If I can’t trust the nurses responsible for his care in the hospital, and the doctor’s have no control over their orders being carried out… then I am truly alone. I was able to fight because I believed we had a team that was fighting with us and for us. Not only do I find myself alone in this fight, I can no longer trust my team.
My brain keeps flashing to the end of “Thelma and Louise”. When they realized it was just the two of them, and no one was going to stand up for them, they took the cliff. NOW I get it.
Calm down. I’m not suicidal. Trust me, I’m not the kind who telegraphs such intentions. If I were really about ending it all, no one would know till it was over.
My favorite movie line of the day….
“We’re all alone out there, and tomorrow we’re going out there again.”
Anyone? Anyone? William Hurt, The Big Chill.
Nevertheless, I am working on the anger. I’ve always believed that Anger is nothing more than a symptom, and it’s best to treat the cause rather than the symptom. In order to diagnose the cause of anger I make myself the defense attorney. It gives one a different perspective, broadens understanding and fosters forgiveness.
I have spent the past few days building a major defense on the incorrect dosing of Rich’s diazoxide.
After all, your Honor, the defendants are only human, not to mention overworked, and let us not forget that we only have the victim’s word that he was started on the bottom line of the dropper and never received more than one full dropper. Let us not forget that he was severely sleep deprived AND hypoglycemic—hardly a reliable witness that would hold up under cross-examination. It seems obvious here that the real question is “Where was the Wife?” It’s hard to credit any true concern when she was seldom at his bedside Monday through Friday, and never once questioned what the nursing staff was doing or giving. Why wasn’t the Wife demanding to see his med list? Requiring staff to demonstrate their dosing methods and calculations? Ultimately, isn’t the Wife responsible for his care? If she chooses to put her job and fiscal responsibilities above her husband’s care she can hardly expect others to cover for her neglect.
Thank you, your Honor. I rest my case.
At which point I had a three hour cry that ended around 9 am this morning. Not convenient, but necessary.
Now that my anger has evolved into guilt I can move on. Not that I ever intended to cause anyone any grief over this. I’m not stupid. No matter how high I might jump ugly, the most that would happen is that one or more nurses would get written up, and that is not what I want and NOT the way to prevent this from happening in the future.
The real problem here is that people with no concept of patient care are making the decisions about patient care, i.e. staffing. These decision makers will NEVER experience the results of their decisions, and I know this from experience, because if they or one of their family members is ever a patient, the Ts will be crossed and the I’s will be dotted, and staff will work their asses off and shit through their ribs to make sure Life is Perfect for them. I know this because I have witnessed this phenomenon first hand, more than once.
It is much the same as Congress determining our health care when they never have to experience it for themselves because they have their own “special healthcare”. La-de-da, la-de-da.
Second to the guilt, I’ve discovered that the cause of my anger is feeling betrayed and abandoned. Not to say that those feelings are reasonable or justified, but thank the goddess, feelings don’t have to be reasonable or justified. They just ARE.
To even attempt to tell you what life with cancer is like is just plain ignorant. Either you already have the relationship, in which case I can add nothing to your knowledge, or you don’t have the relationship , in which case nothing I say can create a whisper of the image for you.
I WILL tell you that fighting cancer is hard enough without getting hit from behind by the people that you trust to have your back. I look up to RNs the way an apprentice looks up to the master craftsman. The RNs I’ve worked with have been my best teachers and I love them like family. They set an example of what a nurse should be. So whenever Rich was in their care, I stepped back with trust and respect. I knew they were caring for him the way I would care for their husband. I was trained to check every dose three times before giving it. “You do not blindly trust anyone to determine the dose you give. It is on you. You follow the doctor’s orders and you do the math and YOU are responsible.” That was the mantra my nursing instructors drilled into my brain. I live by it.
I happen to love White Stripes. One of their songs has become a terminal loop in my brain...."NURSE" Check it out.
My anger is the symptom of feeling betrayed. And scared. If I can’t trust the nurses responsible for his care in the hospital, and the doctor’s have no control over their orders being carried out… then I am truly alone. I was able to fight because I believed we had a team that was fighting with us and for us. Not only do I find myself alone in this fight, I can no longer trust my team.
My brain keeps flashing to the end of “Thelma and Louise”. When they realized it was just the two of them, and no one was going to stand up for them, they took the cliff. NOW I get it.
Calm down. I’m not suicidal. Trust me, I’m not the kind who telegraphs such intentions. If I were really about ending it all, no one would know till it was over.
My favorite movie line of the day….
“We’re all alone out there, and tomorrow we’re going out there again.”
Anyone? Anyone? William Hurt, The Big Chill.
Tuesday, December 6, 2011
How about we try remedial math....
If there are 50 milligrams per milliliters of diazoxide and the doctor has ordered the patient to get 250 mg…how many mL should the patient have?
Take your time.
Now. If the fill line on the dropper that comes with this oral med says 50 mg, how many dropperfuls would the patient need to get for the 250 mg prescribed dose?
Take your time.
Now. The reason I have posed this remedial math question is because I don’t want to appear too harsh. Let me explain.
During Rich’s discharge, the RN went over his home going meds and dosing instructions. When she got to the diazoxide she told him he was to get 250 mg once a day and that would be one full dropper. Rich verbalized understanding, including “Yes, that’s what they’ve been giving me.” The RN nodded. Fool that I am, I did not demand to examine the bottle. When will I learn?!
I have had no reason to examine the bottle because Rich takes his diazoxide at 10 pm and I go to bed at 8 pm.
Last night his endo doctor called to check on him and based on his blood sugars at home and some lab results, she wanted to change the dosing on the diazoxide. I wrote down all her instructions, and we finished our call. In order to make sure I got the dosing correct, I examined the bottle. Three times I compared the label on the bottle to the discharge instructions because of course an LPN is never going to be smarter than an RN. The label said 50 mg/mL. The dropper had a fill line that read 50 mg. I give enough injections to know that there is NO way that one dropper could hold 5 mL.
Again I asked Rich, “how many droppers of this did you get in the hospital.”
“One, “he said, “250 milligrams.”
Really?!?!?! Really. you fucking kidding me. (Question mark intentionally omitted.)
But wait. There’s more. Before the Endo doctor called the house to talk to Rich, Dr Kelli Peiffer, our PCP, called ME on my cell phone. Information was just now starting to trickle in to her office and she wanted to know who his cardiologist is, because she wanted to know why he’s still on the metoprolol. I explained that they used it in the hospital last year when he was septic and his heart rate was >120. When he recovered I asked them to stop the metoprolol but they wanted to keep him on it.
Dr Peiffer then explains that because it’s a beta-blocker, it’s going to mask any symptoms of hypoglycemia. Nice. She’s thinking that maybe if it’s okay with the other doctors we could start weaning him off the beta-blocker and give him more of a fighting chance of staying on top of the low blood sugars.
My head wants to explode. So when I call the endo doctor back because Rich can’t find the information she wants, I mention the metoprolol, and in a very round about way she explains that non cardiologists do not question the work of cardiologists. And here I thought surgeons were at the top of that food chain.
Once again Dr Peiffer figures out a glaring medication problem. Despite the fact that she’s Rich’s PCP, her main source of information is this blog. She is the only one of his doctors who asks me anything. Apparently a sleep-deprived hypoglycemic is a better source of information. Oh dear. Do I sound bitter?
After the phone calls with the doctors and the mental meltdown on discovering the dosing error on his diazoxide, I am returning a call to Christy when I realize that Rich is sitting on the couch, holding his glasses 10 inches in front of his face and asking me for the ninth time “what’s wrong with my glasses, I can’t see anything.” The tenth time he asked me, he started slurring his words.
I tell Christy what’s happening and hang up.
I can take a blood sugar at warp speed while simultaneously pouring a glass of milk and force feeding a high protein snack.
Forty minutes later he was himself again. Christy shows up with food and stays the night, working on her computer while keeping an eye on Rich so I can go to bed.
Today I tell the endo doctor about the dosing error, just because I think it’s something she needs to be aware of. Her response is that she can’t control what goes on in the hospital. Okay. Maybe we should find someone who can. Because here’s the deal. You can’t fire 72 LPNs, replace them with 20 new RNs and think patient care is not going to suffer.
Don’t piss on my shoes and tell me it’s raining.
Take your time.
Now. If the fill line on the dropper that comes with this oral med says 50 mg, how many dropperfuls would the patient need to get for the 250 mg prescribed dose?
Take your time.
Now. The reason I have posed this remedial math question is because I don’t want to appear too harsh. Let me explain.
During Rich’s discharge, the RN went over his home going meds and dosing instructions. When she got to the diazoxide she told him he was to get 250 mg once a day and that would be one full dropper. Rich verbalized understanding, including “Yes, that’s what they’ve been giving me.” The RN nodded. Fool that I am, I did not demand to examine the bottle. When will I learn?!
I have had no reason to examine the bottle because Rich takes his diazoxide at 10 pm and I go to bed at 8 pm.
Last night his endo doctor called to check on him and based on his blood sugars at home and some lab results, she wanted to change the dosing on the diazoxide. I wrote down all her instructions, and we finished our call. In order to make sure I got the dosing correct, I examined the bottle. Three times I compared the label on the bottle to the discharge instructions because of course an LPN is never going to be smarter than an RN. The label said 50 mg/mL. The dropper had a fill line that read 50 mg. I give enough injections to know that there is NO way that one dropper could hold 5 mL.
Again I asked Rich, “how many droppers of this did you get in the hospital.”
“One, “he said, “250 milligrams.”
Really?!?!?! Really. you fucking kidding me. (Question mark intentionally omitted.)
But wait. There’s more. Before the Endo doctor called the house to talk to Rich, Dr Kelli Peiffer, our PCP, called ME on my cell phone. Information was just now starting to trickle in to her office and she wanted to know who his cardiologist is, because she wanted to know why he’s still on the metoprolol. I explained that they used it in the hospital last year when he was septic and his heart rate was >120. When he recovered I asked them to stop the metoprolol but they wanted to keep him on it.
Dr Peiffer then explains that because it’s a beta-blocker, it’s going to mask any symptoms of hypoglycemia. Nice. She’s thinking that maybe if it’s okay with the other doctors we could start weaning him off the beta-blocker and give him more of a fighting chance of staying on top of the low blood sugars.
My head wants to explode. So when I call the endo doctor back because Rich can’t find the information she wants, I mention the metoprolol, and in a very round about way she explains that non cardiologists do not question the work of cardiologists. And here I thought surgeons were at the top of that food chain.
Once again Dr Peiffer figures out a glaring medication problem. Despite the fact that she’s Rich’s PCP, her main source of information is this blog. She is the only one of his doctors who asks me anything. Apparently a sleep-deprived hypoglycemic is a better source of information. Oh dear. Do I sound bitter?
After the phone calls with the doctors and the mental meltdown on discovering the dosing error on his diazoxide, I am returning a call to Christy when I realize that Rich is sitting on the couch, holding his glasses 10 inches in front of his face and asking me for the ninth time “what’s wrong with my glasses, I can’t see anything.” The tenth time he asked me, he started slurring his words.
I tell Christy what’s happening and hang up.
I can take a blood sugar at warp speed while simultaneously pouring a glass of milk and force feeding a high protein snack.
Forty minutes later he was himself again. Christy shows up with food and stays the night, working on her computer while keeping an eye on Rich so I can go to bed.
Today I tell the endo doctor about the dosing error, just because I think it’s something she needs to be aware of. Her response is that she can’t control what goes on in the hospital. Okay. Maybe we should find someone who can. Because here’s the deal. You can’t fire 72 LPNs, replace them with 20 new RNs and think patient care is not going to suffer.
Don’t piss on my shoes and tell me it’s raining.
Sunday, December 4, 2011
Day Two at home with the Cure
Home friday night; and I refuse to divulge how I managed to give him the 11:30 pm subcu injection. Suffice it to say, I made it happen.
Saturday went....o----kay? At 09:30 am I awoke in a panic, realizing that he had reneged on his promise to take the 4 am watch. Holy crap was I pissed. I scrambled to get his blood sugar, a high protein breakfast and his 08:00 injection. I now have blisters on the inside of my lip from biting it. I have a long fuse, but it gets real short when someone is jerking it. Finally I looked at him and softly said,
"So this is how it's gonna roll? I'm gonna wait on you hand and foot all weekend and work and worry all week?" I left the room before he had to come up with a half-assed answer that would have only poured gasoline on the burning coals. Color me stupid but I trusted him to get the point.
He did his best the rest of the day despite that he's still recovering from sleep deprivation. I would love to nurse him every minute but that's not going to get him where he needs to be so that I can go back to work on Monday. Seriously, dude, if you can find a call light attached to your bed, you go right ahead and try it. Let me know how that works for you.
Oh my gawd, I sound like a Bitch.
At 6:30 pm I fall asleep on the couch after working all day cleaning, cooking, prepping to be gone Monday through Friday. At four am this morning I wake to the sound of footsteps on the stairs. I can barely form words. "Are you okay?" (if I had a quarter for every time I've asked him that) Yeah, he's just getting his 4 am snack. Stupid me, I have to ask what his blood sugar is....
41
I felt a sudden stabbing sensation in my brain. Three brain cells fired and screamed at me to GET UP, YOU ASSHOLE, AND FIX THIS!!!! The voices in my head out-number three panicked brain cells. I turned over, as well as one can on a couch, and went back to sleep.
I woke up at 08:30 this morning and ran upstairs to ask "are you okay?" He wakens easily and says yes. I want to go back to sleep, but maybe twelve plus hours is enough, and then I realize we're late for morning meds, blood sugars and a HIGH protein breakfast. I kick it into gear and in twenty minutes I've got Irish oatmeal, whole grain toast and 10 oz of milk on a tray with his subcu injection. First his blood sugar, which is 157. Fuck me very much.
All it takes is one low blood sugar to totally shake the foundation of my ease. At this point, it is not possible to stop my brain from running the gamut of every possible parallel universe I might enter. I have to remain calm and make this okay. I have to be ready to call 911 and warn the ER not to touch him when we get there. Worse... when I explain why we're back, someone is going to ask.... "has he been taking his medications correctly?"
Within 27 seconds of my hearing THAT question, one of two things will happen.
1) I will scream "the medications you gave us without THE gawd=damned syringes required to inject it?????? someone will then be calling Security with a very shrill tone of panic in their voice,
OR
2) I will kiss my husband, smile and nod to everyone in the room and leave without a word. I will wander out into the night, weaving past the hive of ambulances around the ER entrance until I reach the sidewalk. I will walk off into the dark cold night, camera still for shot of me walking away, go to black, The End.
Planning is good. It doesn't have to be a GOOD plan. Sometimes you just need a plan.
Saturday went....o----kay? At 09:30 am I awoke in a panic, realizing that he had reneged on his promise to take the 4 am watch. Holy crap was I pissed. I scrambled to get his blood sugar, a high protein breakfast and his 08:00 injection. I now have blisters on the inside of my lip from biting it. I have a long fuse, but it gets real short when someone is jerking it. Finally I looked at him and softly said,
"So this is how it's gonna roll? I'm gonna wait on you hand and foot all weekend and work and worry all week?" I left the room before he had to come up with a half-assed answer that would have only poured gasoline on the burning coals. Color me stupid but I trusted him to get the point.
He did his best the rest of the day despite that he's still recovering from sleep deprivation. I would love to nurse him every minute but that's not going to get him where he needs to be so that I can go back to work on Monday. Seriously, dude, if you can find a call light attached to your bed, you go right ahead and try it. Let me know how that works for you.
Oh my gawd, I sound like a Bitch.
At 6:30 pm I fall asleep on the couch after working all day cleaning, cooking, prepping to be gone Monday through Friday. At four am this morning I wake to the sound of footsteps on the stairs. I can barely form words. "Are you okay?" (if I had a quarter for every time I've asked him that) Yeah, he's just getting his 4 am snack. Stupid me, I have to ask what his blood sugar is....
41
I felt a sudden stabbing sensation in my brain. Three brain cells fired and screamed at me to GET UP, YOU ASSHOLE, AND FIX THIS!!!! The voices in my head out-number three panicked brain cells. I turned over, as well as one can on a couch, and went back to sleep.
I woke up at 08:30 this morning and ran upstairs to ask "are you okay?" He wakens easily and says yes. I want to go back to sleep, but maybe twelve plus hours is enough, and then I realize we're late for morning meds, blood sugars and a HIGH protein breakfast. I kick it into gear and in twenty minutes I've got Irish oatmeal, whole grain toast and 10 oz of milk on a tray with his subcu injection. First his blood sugar, which is 157. Fuck me very much.
All it takes is one low blood sugar to totally shake the foundation of my ease. At this point, it is not possible to stop my brain from running the gamut of every possible parallel universe I might enter. I have to remain calm and make this okay. I have to be ready to call 911 and warn the ER not to touch him when we get there. Worse... when I explain why we're back, someone is going to ask.... "has he been taking his medications correctly?"
Within 27 seconds of my hearing THAT question, one of two things will happen.
1) I will scream "the medications you gave us without THE gawd=damned syringes required to inject it?????? someone will then be calling Security with a very shrill tone of panic in their voice,
OR
2) I will kiss my husband, smile and nod to everyone in the room and leave without a word. I will wander out into the night, weaving past the hive of ambulances around the ER entrance until I reach the sidewalk. I will walk off into the dark cold night, camera still for shot of me walking away, go to black, The End.
Planning is good. It doesn't have to be a GOOD plan. Sometimes you just need a plan.
Saturday, December 3, 2011
They shoot horses, don't they?
Rich was discharged today. He has spent 19 of the past 21 days in the hospital. As he often says, “it’s a helluva lot easier getting into the place than it is to get out.”
No shit.
I should be grateful; this was only a four-hour discharge. We’ve had worse. In fact we didn’t know he was being discharged until hospital staff we’ve never met before came in to ask us if we needed any help setting up our home infusion services since he was being discharged today. She asked like she was less sure of the discharge than anything else. I just laughed. “I’m just the wife,” I told her, “nobody tells me anything.”
At 2 pm his nurse since 7 am came in and asked us if he was being discharged today. Sometimes I can’t tell if these people scare me or annoy me.
While I would love to provide staff with the answers to these burning questions, I’m not the Delphi.
At 3 pm a Care Manager comes in to tell us he’s being discharged. Hmm. You’re the one who left me a voice mail to that effect two days ago. Really? Well pardon me if I totally ignore your jokes until I see the discharge paperwork and a wheelchair rolling in.
Next thing I know we’ve got two Care Managers and an RN telling us that “yes, Virginia, there is a Santa Claus and you’ll be out of here in thirty minutes. ”
I actually laughed out loud and said, “oh, let me set my watch.” Apparently someone tattooed “STUPID” on my head last night while I was sleeping. To prove themselves they hand me three prescriptions. Okay, I’ll bite. I start asking questions on all the things I will need to know about home care. Well, that was a hot mess, because no one in the room had the answers. Like, do we have orders for his PICC line care? Are you sending me home with a bag of IV dextrose in case he crashes again, or do I just call 911? How often do I have to check his sugar?
They think it’s every two-hour blood sugar checks. “Well, that’s not going to happen,” I say with a smile that I saw on a serial killer on an episode of Law and Order Criminal Intent. They stare at me. I then explain the concept of sleep hygiene, REM requirements, the use of sleep deprivation as a form of torture and as it relates to Quality of Life….“So I just need ya’ll to understand that when sleep deprivation takes over and I wake up to find him in a hypoglycemic coma AGAIN, I will call the squad and when we get back here I WILL hold a Come to Jesus Meeting with everyone concerned.” Closing with my best Forrest Gump smile.
Now they check the chart, and they’re going to pull the PICC line so no safety stash of dextrose because he’s been stable for twelve (woo-hoo!) hours now, and suddenly his home going orders are for every FOUR hour blood sugar checks. Well, la-de-frickin-da…. What was I worried about?!?!?! Oh yeah, after the last discharge he was stable for 48 hours before I had to call the squad.
They give me the bag of medication from the hospital pharmacy for his every 8-hour injections. I ask if I need syringes. “no, no, this medication is in pre-drawn syringes.” And I believe them, because at his last hospital discharge it was in pre-drawn syringes.
I then begin my Hoover routine where I make huge sucking noises in their general direction to assure them that they are wonderful and I would grovel before them if I weren’t afraid of embarrassing them.
An hour and a half later the nurse comes in to go over the discharge paperwork.
HOLD THE PHONE! I am such a bitch because I’m crossing t’s and dotting I’s and The Discharge orders do NOT match the prescriptions they’ve given me, and she can’t find anything in the chart that explains a change in dosing directions—once daily, twice daily, which is it? She’s off to page the doctor. Nice.
Some time later she comes back, doctors want dosing as per the scripts they just wrote, not what they’ve been doing up till now. Okee-dokee. Then she pulls the PICC line. I head out to get the car. About half way home we realize we won’t make it to the pharmacy before they close. But no worries, we have what we need until tomorrow.
I am on pins and needles. Rich curls up on the couch beside me and the instant his breathing sounds ANYTHING like his coma breathing I nudge him and ask if he’s okay. Now I’m controlling his sleep deprivation. This sucks.
We do his 10:30 high protein snack and his bedtime meds. He gets the pre-filled injections from the bag in the fridge and …. Wait for it…… the medication is in vials, NOT –pre-filled syringes. Not being an IV drug user myself, I find I am totally without syringes. Don’t I feel stupid. Just before my head explodes, I dive back into the fridge and find two syringes of the med from his last discharge that equal the one dose he needs. So we’re okay for tonight, but his net dose is due at 7 am and the pharmacy doesn’t open until 8 and by the time I get it back home it will be 9 am, and with falling blood sugars every minute counts. … It is 11:30 pm.
I pull his Care Manager’s card out of my pocket and I dial her number. Rich points out that she’s not there. Duh. I don’t want to talk to the bitch; I just want to leave a message. “…this is Rich Eitner’s wife. Remember when you assured me I didn’t need syringes because the octreotide is in pre-drawn syringes? Well it’s time for his bedtime dose, I just opened the bag and the medication is in vials and I don’t have syringes. Just so you know. Thank you, and have a nice weekend.”
And they wonder why I don’t have the warm fuzzies???? I’d just like to point out that he was stable for a whole twelve hours before discharge. And they changed the dosing of his meds JUST before they sent him home.
It’s now 1 am and I don’t want to go to sleep. Worse, I don’t want to go upstairs and check on him because I’m afraid of what I’ll find and more afraid of my reaction to what I might find.
I need to stop thinking. I need to surrender to this tsunami and look forward to the meteorite storm that’s heading my way. I need to drink the Kool-aid. I had no idea how much strength it takes just to Believe. Devotedly, helplessly and unfailingly. My problem is that I’m not a passive believer. I’m a Warrior Believer.
It’s 1:05 am. It is Dec 3, 2011. Today is 1,000 days with cancer.
No shit.
I should be grateful; this was only a four-hour discharge. We’ve had worse. In fact we didn’t know he was being discharged until hospital staff we’ve never met before came in to ask us if we needed any help setting up our home infusion services since he was being discharged today. She asked like she was less sure of the discharge than anything else. I just laughed. “I’m just the wife,” I told her, “nobody tells me anything.”
At 2 pm his nurse since 7 am came in and asked us if he was being discharged today. Sometimes I can’t tell if these people scare me or annoy me.
While I would love to provide staff with the answers to these burning questions, I’m not the Delphi.
At 3 pm a Care Manager comes in to tell us he’s being discharged. Hmm. You’re the one who left me a voice mail to that effect two days ago. Really? Well pardon me if I totally ignore your jokes until I see the discharge paperwork and a wheelchair rolling in.
Next thing I know we’ve got two Care Managers and an RN telling us that “yes, Virginia, there is a Santa Claus and you’ll be out of here in thirty minutes. ”
I actually laughed out loud and said, “oh, let me set my watch.” Apparently someone tattooed “STUPID” on my head last night while I was sleeping. To prove themselves they hand me three prescriptions. Okay, I’ll bite. I start asking questions on all the things I will need to know about home care. Well, that was a hot mess, because no one in the room had the answers. Like, do we have orders for his PICC line care? Are you sending me home with a bag of IV dextrose in case he crashes again, or do I just call 911? How often do I have to check his sugar?
They think it’s every two-hour blood sugar checks. “Well, that’s not going to happen,” I say with a smile that I saw on a serial killer on an episode of Law and Order Criminal Intent. They stare at me. I then explain the concept of sleep hygiene, REM requirements, the use of sleep deprivation as a form of torture and as it relates to Quality of Life….“So I just need ya’ll to understand that when sleep deprivation takes over and I wake up to find him in a hypoglycemic coma AGAIN, I will call the squad and when we get back here I WILL hold a Come to Jesus Meeting with everyone concerned.” Closing with my best Forrest Gump smile.
Now they check the chart, and they’re going to pull the PICC line so no safety stash of dextrose because he’s been stable for twelve (woo-hoo!) hours now, and suddenly his home going orders are for every FOUR hour blood sugar checks. Well, la-de-frickin-da…. What was I worried about?!?!?! Oh yeah, after the last discharge he was stable for 48 hours before I had to call the squad.
They give me the bag of medication from the hospital pharmacy for his every 8-hour injections. I ask if I need syringes. “no, no, this medication is in pre-drawn syringes.” And I believe them, because at his last hospital discharge it was in pre-drawn syringes.
I then begin my Hoover routine where I make huge sucking noises in their general direction to assure them that they are wonderful and I would grovel before them if I weren’t afraid of embarrassing them.
An hour and a half later the nurse comes in to go over the discharge paperwork.
HOLD THE PHONE! I am such a bitch because I’m crossing t’s and dotting I’s and The Discharge orders do NOT match the prescriptions they’ve given me, and she can’t find anything in the chart that explains a change in dosing directions—once daily, twice daily, which is it? She’s off to page the doctor. Nice.
Some time later she comes back, doctors want dosing as per the scripts they just wrote, not what they’ve been doing up till now. Okee-dokee. Then she pulls the PICC line. I head out to get the car. About half way home we realize we won’t make it to the pharmacy before they close. But no worries, we have what we need until tomorrow.
I am on pins and needles. Rich curls up on the couch beside me and the instant his breathing sounds ANYTHING like his coma breathing I nudge him and ask if he’s okay. Now I’m controlling his sleep deprivation. This sucks.
We do his 10:30 high protein snack and his bedtime meds. He gets the pre-filled injections from the bag in the fridge and …. Wait for it…… the medication is in vials, NOT –pre-filled syringes. Not being an IV drug user myself, I find I am totally without syringes. Don’t I feel stupid. Just before my head explodes, I dive back into the fridge and find two syringes of the med from his last discharge that equal the one dose he needs. So we’re okay for tonight, but his net dose is due at 7 am and the pharmacy doesn’t open until 8 and by the time I get it back home it will be 9 am, and with falling blood sugars every minute counts. … It is 11:30 pm.
I pull his Care Manager’s card out of my pocket and I dial her number. Rich points out that she’s not there. Duh. I don’t want to talk to the bitch; I just want to leave a message. “…this is Rich Eitner’s wife. Remember when you assured me I didn’t need syringes because the octreotide is in pre-drawn syringes? Well it’s time for his bedtime dose, I just opened the bag and the medication is in vials and I don’t have syringes. Just so you know. Thank you, and have a nice weekend.”
And they wonder why I don’t have the warm fuzzies???? I’d just like to point out that he was stable for a whole twelve hours before discharge. And they changed the dosing of his meds JUST before they sent him home.
It’s now 1 am and I don’t want to go to sleep. Worse, I don’t want to go upstairs and check on him because I’m afraid of what I’ll find and more afraid of my reaction to what I might find.
I need to stop thinking. I need to surrender to this tsunami and look forward to the meteorite storm that’s heading my way. I need to drink the Kool-aid. I had no idea how much strength it takes just to Believe. Devotedly, helplessly and unfailingly. My problem is that I’m not a passive believer. I’m a Warrior Believer.
It’s 1:05 am. It is Dec 3, 2011. Today is 1,000 days with cancer.
Thursday, December 1, 2011
Another Math Problem
If an adult human has to set an alarm to wake up EVERY TWO HOURS to take his blood sugar, then eat and/or give himself an injection, how many days will it take until exhaustion causes him to sleep through the alarm and his mate comes home to find him in a hypoglycemic coma?
This is not a rhetorical question. I'm hoping someone can come up with an answer because this seems to be the plan, and his current healthcare providers seem to think that the answer is an infinite amount of days. I, however, calculate it to be within 48 hours of discharge. Granted I'm basing my calculations on my own experience with sleep deprivation. There is a reason it is used as a form of torture.
Yesterday I got a voice mail from a woman who identified herself as Rich's Case Manager at the hospital and they wanted to discharge him the following morning. The problem being that no pharmacy has the medication that must be injected eight times a day so I'll need to be there before the hospital pharmacy closes to get his home going meds, and I'll need to bring a credit card. (apparently they don't trust I will have sufficient funds in my checking account) Hence I was able to deduce that they have worked this math problem to the infinite. Not longer afterwards I get a call from Rich telling me that they are going to discharge him the next day. REALLY?!?!?!? Really....
Here's a math ANSWER for you...43 That is the number of ounces of Scotch it would take to destroy more brain cells than Rich's current discharge plan.
Even the Creator knew to design a newborn human with a stomach that can be filled to a four hour capacity. Why? Because that's the MINIMUM amount of sleep that the newborn and it's caregivers require for survival. It's also why new parents get a few weeks leave from work. Am I missing something here?
When you're dealing with this level of insanity, it's good to have a diversion, so I scurried off to the grocery store. Then I waited in a line for 15 minutes to put $57 worth of gas in my van. Then I defrosted and marinated 5 lbs of chicken thighs so I could grill them the next day so he would have high protein, antibiotic free, hormone free snacks every two hours. I packed up some clothes for him (because EMS took him to the hospital in his jammies) and loaded up the van. Finally I went to bed with my iPod pouring relaxing music into my ears in hopes of staving off nightmare creating panic.
This morning I get a call. His blood sugar dropped to 53 at 2 am following a huge snack just four hours earlier. He's not going anywhere. Later this morning his fasting sugar before lunch was 384.
Don't misunderstand. I'm not faulting anyone here. I understand and appreciate how hard they're working on this. I just worry that they're focused on the science and forgetting the reality of being human. A plan that involves waking every two hours may in fact control the blood sugar, but what quality of life does that offer? Think about it people! Rich is a human being, not just a collection of lab results.
All that anxiety and prep for nothing. I need to stop taking these people seriously.
My heart aches every time I talk to him. He sounds like... like.... oh yeah, like someone who's been awakened every two hours for THREE WEEKS. It's hard to say what he wants more, home or sleep. As I am conflicted between wanting him home and wanting him safe.
My pom-pons are getting pretty ragged, and I'm even nauseated by my efforts to cheer him on. A few days ago he stopped being angry. He no longer cares. He doesn't want me to come to see him after work. He knows I'm tired and stressed and it's an hour and fifteen minutes from work to his bedside and then another forty minutes from his bedside to my bed. When I am there, I crawl into bed beside him and he goes to sleep. Mostly he's too tired to even talk.
My only source of information is Rich and I'm thinking that anyone capable of reading this can figure out that I'd be better off reading tea leaves. I am floating on blind faith at this point.
I keep telling myself that he's not giving up, he's just exhausted.
He didn't see any of his doctors today. But the hospital pharmacist came to see him. I have worked in a hospital, and over many years I have known and heard of people who were patients in a hospital and I have NEVER heard of any patient being visited by the hospital's pharmacist.
When I asked, all Rich could tell me was that he wanted to tell him about all the research they're doing and the things they're trying to tweak. They're going to add prednisone to the octreotide and I'm trying not to wonder if steroids effect cancer cells the same way they effect muscle cells. Then the pharmacist told him, "we've just never seen anything like this before."
AHA!! You wanted to see for yourself! You wanted to meet him. I guess the doctor was right when she told me that "everyone here knows about Rich." I'm starting to think Rich is the Forrest Gump of pancreatic cancer.
My frustration and venting aside, I love these people for working so hard for him and I feel their pain. I pray for all of them constantly. Rich and I have talked about this, and we truly believe he could not be in better hands.
It's not what you know, it's how good you are at finding out.
This is not a rhetorical question. I'm hoping someone can come up with an answer because this seems to be the plan, and his current healthcare providers seem to think that the answer is an infinite amount of days. I, however, calculate it to be within 48 hours of discharge. Granted I'm basing my calculations on my own experience with sleep deprivation. There is a reason it is used as a form of torture.
Yesterday I got a voice mail from a woman who identified herself as Rich's Case Manager at the hospital and they wanted to discharge him the following morning. The problem being that no pharmacy has the medication that must be injected eight times a day so I'll need to be there before the hospital pharmacy closes to get his home going meds, and I'll need to bring a credit card. (apparently they don't trust I will have sufficient funds in my checking account) Hence I was able to deduce that they have worked this math problem to the infinite. Not longer afterwards I get a call from Rich telling me that they are going to discharge him the next day. REALLY?!?!?!? Really....
Here's a math ANSWER for you...43 That is the number of ounces of Scotch it would take to destroy more brain cells than Rich's current discharge plan.
Even the Creator knew to design a newborn human with a stomach that can be filled to a four hour capacity. Why? Because that's the MINIMUM amount of sleep that the newborn and it's caregivers require for survival. It's also why new parents get a few weeks leave from work. Am I missing something here?
When you're dealing with this level of insanity, it's good to have a diversion, so I scurried off to the grocery store. Then I waited in a line for 15 minutes to put $57 worth of gas in my van. Then I defrosted and marinated 5 lbs of chicken thighs so I could grill them the next day so he would have high protein, antibiotic free, hormone free snacks every two hours. I packed up some clothes for him (because EMS took him to the hospital in his jammies) and loaded up the van. Finally I went to bed with my iPod pouring relaxing music into my ears in hopes of staving off nightmare creating panic.
This morning I get a call. His blood sugar dropped to 53 at 2 am following a huge snack just four hours earlier. He's not going anywhere. Later this morning his fasting sugar before lunch was 384.
Don't misunderstand. I'm not faulting anyone here. I understand and appreciate how hard they're working on this. I just worry that they're focused on the science and forgetting the reality of being human. A plan that involves waking every two hours may in fact control the blood sugar, but what quality of life does that offer? Think about it people! Rich is a human being, not just a collection of lab results.
All that anxiety and prep for nothing. I need to stop taking these people seriously.
My heart aches every time I talk to him. He sounds like... like.... oh yeah, like someone who's been awakened every two hours for THREE WEEKS. It's hard to say what he wants more, home or sleep. As I am conflicted between wanting him home and wanting him safe.
My pom-pons are getting pretty ragged, and I'm even nauseated by my efforts to cheer him on. A few days ago he stopped being angry. He no longer cares. He doesn't want me to come to see him after work. He knows I'm tired and stressed and it's an hour and fifteen minutes from work to his bedside and then another forty minutes from his bedside to my bed. When I am there, I crawl into bed beside him and he goes to sleep. Mostly he's too tired to even talk.
My only source of information is Rich and I'm thinking that anyone capable of reading this can figure out that I'd be better off reading tea leaves. I am floating on blind faith at this point.
I keep telling myself that he's not giving up, he's just exhausted.
He didn't see any of his doctors today. But the hospital pharmacist came to see him. I have worked in a hospital, and over many years I have known and heard of people who were patients in a hospital and I have NEVER heard of any patient being visited by the hospital's pharmacist.
When I asked, all Rich could tell me was that he wanted to tell him about all the research they're doing and the things they're trying to tweak. They're going to add prednisone to the octreotide and I'm trying not to wonder if steroids effect cancer cells the same way they effect muscle cells. Then the pharmacist told him, "we've just never seen anything like this before."
AHA!! You wanted to see for yourself! You wanted to meet him. I guess the doctor was right when she told me that "everyone here knows about Rich." I'm starting to think Rich is the Forrest Gump of pancreatic cancer.
My frustration and venting aside, I love these people for working so hard for him and I feel their pain. I pray for all of them constantly. Rich and I have talked about this, and we truly believe he could not be in better hands.
It's not what you know, it's how good you are at finding out.
Sunday, November 27, 2011
Here's a Math problem for you...
How many times over how many days does a board certified Endocrinologist have to write nursing orders so that the patient does NOT receive juice when his blood sugars drop below 70 because they want him to have MILK? No Juice, give milk.
Don't ponder it too long, or as Lewis Black would say, "blood will spurt out of your nose."
I know this because I was fighting a nosebleed as I drove home from the hospital this evening.
In the handful of visits I've had with Rich, every time his blood sugar has dropped and in comes nursing staff (NOT an LPN) with juice, and we have to point out that he is not supposed to have juice. He finally admitted to me that it has happened repeatedly when I'm not there. Okay, it happens every gawd-damned time. Really? Really. What the fuck would happen if he weren't capable of directing his care?! Personally I'm a bit weary of hearing the doctor reinforce this directive to ME when staff can't grasp the concept. No, really, I get it, doc, why don't you have this chat with staff?
No, I take that back--why don't you have this chat with the freakin' bean counters who determined patient care would not suffer by firing 72 LPNs, with the goal of replacing them with 20 new graduate RNs. Ma head done damn wanna explode!!!!!
Because seriously, there is no better nursing staff on the planet than AGMC nurses. At the same time, the laws of physics dictate that the best of the best still has only two hands and a finite amount of time and at this point is not capable of being in more than one place at one time.
Is anyone listening?!?!?! Basic logic, people. You can't spread one tablespoon of peanut butter across a three foot slice of bread. Duh.
All that aside.
I made a huge batch of Pupshn special Mix. Walnuts, roasted soybeans, almonds, pumpkin seeds, dried papaya, pineapple, cranberries, raisins, blueberries and cherries. I don't even want to tell you how expensive THAT snack is. I toted four pints of it to him, nicely packaged for his snacking convenience. He munched on that for a solid three hours before they checked his blood sugar and it was 61. That and two clementine oranges. Seriously, as much as I want him home, I'm scared to death that I can't stay on top of this. I've had three newborns that were less maintenance. And I was in my early twenties, not working full time outside the home. From experience I can say that if I could breastfeed my way through this I might stand a chance; as it is, I'm screwed.
It's been a long four days of people enjoying their four day weekend, rightfully so. Maybe tomorrow our doctors will hear back from the doctors they're in contact with. Maybe in a day or two or three we'll be closer to a plan that will make this livable.
He's trying so hard to be positive. He's struggling with the fear and frustration and the gob-stopping awful sleep deprivation. How would you like to be awakened every two hours for a needle in your mangled finger; and get up at three AM to eat a full meal? And why can't they test his sugar on his arm like commercial units can do? At every two hours for 8 days, his fingertips are starting to look like raw meat.
I'm running out of positive, reinforcement shit to say that doesn't insult what's left of our collective common sense.
I trimmed his big ole Captain Kangaroo mustache and it seemed to genuinely lift his spirits.
Wow. That's what I'm able to bring to the table. A mustache trim, a back rub, lotion massaged into his feet, Pupshn Mix and "wow, it sucks to be YOU!"
I'm sort of looking forward to tomorrow.
Don't ponder it too long, or as Lewis Black would say, "blood will spurt out of your nose."
I know this because I was fighting a nosebleed as I drove home from the hospital this evening.
In the handful of visits I've had with Rich, every time his blood sugar has dropped and in comes nursing staff (NOT an LPN) with juice, and we have to point out that he is not supposed to have juice. He finally admitted to me that it has happened repeatedly when I'm not there. Okay, it happens every gawd-damned time. Really? Really. What the fuck would happen if he weren't capable of directing his care?! Personally I'm a bit weary of hearing the doctor reinforce this directive to ME when staff can't grasp the concept. No, really, I get it, doc, why don't you have this chat with staff?
No, I take that back--why don't you have this chat with the freakin' bean counters who determined patient care would not suffer by firing 72 LPNs, with the goal of replacing them with 20 new graduate RNs. Ma head done damn wanna explode!!!!!
Because seriously, there is no better nursing staff on the planet than AGMC nurses. At the same time, the laws of physics dictate that the best of the best still has only two hands and a finite amount of time and at this point is not capable of being in more than one place at one time.
Is anyone listening?!?!?! Basic logic, people. You can't spread one tablespoon of peanut butter across a three foot slice of bread. Duh.
All that aside.
I made a huge batch of Pupshn special Mix. Walnuts, roasted soybeans, almonds, pumpkin seeds, dried papaya, pineapple, cranberries, raisins, blueberries and cherries. I don't even want to tell you how expensive THAT snack is. I toted four pints of it to him, nicely packaged for his snacking convenience. He munched on that for a solid three hours before they checked his blood sugar and it was 61. That and two clementine oranges. Seriously, as much as I want him home, I'm scared to death that I can't stay on top of this. I've had three newborns that were less maintenance. And I was in my early twenties, not working full time outside the home. From experience I can say that if I could breastfeed my way through this I might stand a chance; as it is, I'm screwed.
It's been a long four days of people enjoying their four day weekend, rightfully so. Maybe tomorrow our doctors will hear back from the doctors they're in contact with. Maybe in a day or two or three we'll be closer to a plan that will make this livable.
He's trying so hard to be positive. He's struggling with the fear and frustration and the gob-stopping awful sleep deprivation. How would you like to be awakened every two hours for a needle in your mangled finger; and get up at three AM to eat a full meal? And why can't they test his sugar on his arm like commercial units can do? At every two hours for 8 days, his fingertips are starting to look like raw meat.
I'm running out of positive, reinforcement shit to say that doesn't insult what's left of our collective common sense.
I trimmed his big ole Captain Kangaroo mustache and it seemed to genuinely lift his spirits.
Wow. That's what I'm able to bring to the table. A mustache trim, a back rub, lotion massaged into his feet, Pupshn Mix and "wow, it sucks to be YOU!"
I'm sort of looking forward to tomorrow.
Saturday, November 26, 2011
A long weekend
I miss him so much. I spent yesterday working towards getting our Kingdom ready for winter. Admittedly Chris and Alicia did the Lion's share of the physical work. It's difficult to do all the things that we would normally do together without him here. I wanted to get angry that Chris had to move a dozen wheelbarrows of mulch because once again we got a late start on the mulch because every year he orders it too late. I wanted to get angry about that. I wanted to call someone with a back hoe and have them rip up the entire backyard so I wouldn't have to look at the weeds that have overtaken the gardens, died, droop and claim a head start on next spring. I took down the finch feeders and cleaned them, but I don't have the strength or energy to take down the big feeders and clean them.
I can't even begin to deal with the rest of the work--the overgrown paths, weeds, grasses, broken fence and general chaos. I did manage to reset the timers on the outdoor lights. Whoopty-doo.
I went in early to seem him today so I could get back to work at home by noon. He tries so hard to be cheerful when he sees me. Today it seemed like a real effort for him. Yesterday they drained a liter of fluid from his right lung and sent it for biopsy. On a holiday weekend that just gives him longer to worry. Then again, I think he's past worry. Past caring.
I curled into bed beside him and tried to accept the silence of nothing to say. I wanted desperately to hear him talk to me, but I realized he's at a point where he's too weary to make small talk, too pissed to pretend, and in no damn mood to discuss the obvious. I think you reach a point where silence is preferable to platitudes. Still I could feel the tension and finally I opened a door with.... "feel like talking?"
"No."
I waited longer than I thought possible and then all I could come up with was "wow. It SUCKS to be you." He laughed. When he hugged me I sensed he was grateful I had offered nothing other than validation. I no longer tell him "it's going to be okay; you're going to get through this; blah, blah, blah." What I believe no longer matters. He's worn out and frustrated and more than a little scared and he just doesn't need anyone who's not receiving eight injections a day of molten lava to tell him shit about anything.
One of the doctors was in this morning and the new plan is that he will have a large protein snack between 10 and 11 pm and then we'll set the alarm and do another huge snack between 3 and 4 am. I told Rich that if he promises to do the nighttime feeding, I'll do the 4 am feeding.
Even so, we still don't know if this is going to work. He still dropped too low a couple of times in the night. I think the doctors are finally understanding that I can't take him home like this. I'm terrified. They're still waiting for call backs from all the specialists they've called and during a four-day holiday weekend, I'm not holding my breath.
Then Kenny J (20 mos old) came to visit with his Mum, Dad and sister-in-waiting. He was in a mood that perfectly mirrored Rich's--not quite cranky, not full out fussy, just in no mood for anyone's attempt at any level of bullshit in order to move him from the emotional mud puddle he was currently inhabiting. I learned much from my grandson today. Gradually he came around and I wish I had video of him sitting on the bed beside his Grandpa Rich, sharing his lunch tray. Good Stuff.
I'm tired. Keeping an eye on a two day old spider bite on my right arm that's getting a bit ugly. Wishing I had more energy and time for all the things I want and need to get done. Wish I knew something, anything, I could do to make any of this a bit easier for Rich. Best just go to bed so I can start again tomorrow.
"There'll be the evening in the end....till that time arrives,
you can rest your eyes, and begin again"............Cat Stephens
I can't even begin to deal with the rest of the work--the overgrown paths, weeds, grasses, broken fence and general chaos. I did manage to reset the timers on the outdoor lights. Whoopty-doo.
I went in early to seem him today so I could get back to work at home by noon. He tries so hard to be cheerful when he sees me. Today it seemed like a real effort for him. Yesterday they drained a liter of fluid from his right lung and sent it for biopsy. On a holiday weekend that just gives him longer to worry. Then again, I think he's past worry. Past caring.
I curled into bed beside him and tried to accept the silence of nothing to say. I wanted desperately to hear him talk to me, but I realized he's at a point where he's too weary to make small talk, too pissed to pretend, and in no damn mood to discuss the obvious. I think you reach a point where silence is preferable to platitudes. Still I could feel the tension and finally I opened a door with.... "feel like talking?"
"No."
I waited longer than I thought possible and then all I could come up with was "wow. It SUCKS to be you." He laughed. When he hugged me I sensed he was grateful I had offered nothing other than validation. I no longer tell him "it's going to be okay; you're going to get through this; blah, blah, blah." What I believe no longer matters. He's worn out and frustrated and more than a little scared and he just doesn't need anyone who's not receiving eight injections a day of molten lava to tell him shit about anything.
One of the doctors was in this morning and the new plan is that he will have a large protein snack between 10 and 11 pm and then we'll set the alarm and do another huge snack between 3 and 4 am. I told Rich that if he promises to do the nighttime feeding, I'll do the 4 am feeding.
Even so, we still don't know if this is going to work. He still dropped too low a couple of times in the night. I think the doctors are finally understanding that I can't take him home like this. I'm terrified. They're still waiting for call backs from all the specialists they've called and during a four-day holiday weekend, I'm not holding my breath.
Then Kenny J (20 mos old) came to visit with his Mum, Dad and sister-in-waiting. He was in a mood that perfectly mirrored Rich's--not quite cranky, not full out fussy, just in no mood for anyone's attempt at any level of bullshit in order to move him from the emotional mud puddle he was currently inhabiting. I learned much from my grandson today. Gradually he came around and I wish I had video of him sitting on the bed beside his Grandpa Rich, sharing his lunch tray. Good Stuff.
I'm tired. Keeping an eye on a two day old spider bite on my right arm that's getting a bit ugly. Wishing I had more energy and time for all the things I want and need to get done. Wish I knew something, anything, I could do to make any of this a bit easier for Rich. Best just go to bed so I can start again tomorrow.
"There'll be the evening in the end....till that time arrives,
you can rest your eyes, and begin again"............Cat Stephens
Thursday, November 24, 2011
So This is Thanksgiving....
I spent the entire Thanksgiving afternoon with Rich. I went down to the hospital cafeteria and got myself a turkey dinner tray and brought it up in hopes of sharing the meal with him, but he was already done because they brought his meal at 11:45. The good news is the food at AGMC has improved VASTLY since his visit this past June. It's good to look on the sunny side of life.
It took a lot of prep to go in there today. When I talked to him last night at 6:30 as I was leaving work, he was NOT happy. He was very clear on the fact that he's no longer interested in “going on”. He's getting EIGHT injections a day of a medication that is like molten lava. Rich is not a complainer, he has a HIGH threshold for pain and needles don't bother him. He's done. He was crystal clear on the fact that he “will not continue like this. That's 56 shots per week.”
Within the hour before the next injections are due he becomes physically ill with the anticipation of having red hot metal injected into the tops of his thighs. He spent several minutes ranting about the nurses – and this is how I knew we had reached a dangerous depth. His voice is spewing anger as he tells me....
“They come in with these injections and nothing makes it better and every gawd damned time they say “I know, I know, I'm sorry”..... Well, guess what... you DON'T fucking know! YOU don't know! You don't KNOW!”
Those of you who know Rich personally can fathom the horror of hearing him speak like this. I have never heard him speak like this. All I could do was encourage him to vent. He's had enough, there are no answers, there is no plan, there is only this limbo punctuated by eight horrific injections a day. When he seemed done with his spew, I asked him as softly as I could if he wants to stop the fight. I tried to phrase it in such a way that it sounded natural, acceptable, easy and totally okay. There was a long silence, and I've got to point out that it is damn hard to drive on unlit country roads in the dark with a misty rain and your eyes filled with tears and cataracts.
Finally he said, “I can't do this anymore.”
Thanks Be for the Voices in the van, because I heard one of them tell him quite calmly, “Okay, sweetie. I'll be there tomorrow and I'll hold you, and we'll figure out what you want to do next.” Then we spoke of the superficial things that couples speak of at the end of a day that has them parted.
Mostly he was quiet today. I let him be quiet. I did not speak unless spoken to, my goal being that I wanted HIM to feel in control, not being TOLD. After our thanksgiving feast, I crawled into the bed beside him and joined my breathing to his. We were still like that for more than an hour and then he had another wonderful visit from little people—Tessa (14 mos)and Michael (2 mos). I could go on and on about that short visit and what it did for him, but suffice it to say that I know Tessa and I've watched her interact with Rich before, and this time like always she could not take her eyes off him, but she was unusually subdued. It seemed that she plugged right in to the energy and flowed with it.
It so lifted Rich's spirits.
At one point in our visit the endo doctor who is covering for OUR endo doctor came in and spent quite some time with us. She was LOVELY. She continued to reassure us that our doctors have been in contact with all their connections, including Johns Hopkins; Mayo Clinic; Ohio State; some place in Texas and another place in PA that all specialize in pancreatic cancer. The problem is..... wait for it..... Nothing about Rich's current status makes any sense. None of his symptoms (or the lack there of) are providing any information that can lead them towards possible solutions. (welcome to my world of explaining shit that doesn't make sense to people who don't believe you) It was clear that this doctor knew Rich's case inside out and more than once she shook her head and said, “there's not a doctor here that doesn't know about you, Richard. Nothing about you has ever been seen before. But we're working on it.”
We had a couple more hours of curled up in bed together and then his dinner came and he wanted me to start my 40 minute drive before it got really dark.
That's a difficult drive home. Depending on traffic it's 30-40 minutes through inner city Akron out into the boonies thinking about how much time is wasted in traveling.
Just me and the voices in the van.
It was dusk when I left the hospital to go to my van. I had my ticket, pass and cash ready only to discover that it's cheaper to provide free parking than pay for an attendant. Whoo-hoo. Free parking. I wanted to be cheery and grateful about that, but “you know who” pointed out that in the almost three years of hospitalizations I could have fed a third world nation for a week on what I've spent in fuel and parking fees to visit Rich in the hospital. In my humble opinion, a patient's partner should get Free Parking, because we can't pass Go, and we can't collect $200.
It was full on dark by the time I was half way home and it seemed that I passed way too many homes that were fully adorned with Christmas lights. “It's freakin Thanksgiving!!”, one of the voices shouted through the closed side window in the back seat. I couldn't tell if my eyes were watering from stress, emotion, or the glare on my cataracts.
I tried to focus on the concept of “it's freakin Thanksgiving!!” The oncology floor was nearly empty today. I remembered Rich telling me how they were scrambling all day yesterday and this morning to discharge patients home for the holidays. When we strolled the floor together before I left we counted no more than 10 patients roomed, and it seemed that they were patients too old to be aware or care.
I kept driving past joyous-lit houses, some with triangular trees sparkling from front windows. After awhile I felt nothing but confused. It seemed I was driving though a Black Hole of pitiful attempts to rush intention in order to prolong time. Let me know how that works for you.
Starting earlier in order to make It last longer does not make It better. It doesn't work for Weddings, or vacations or Christmas. Starting earlier to make It last longer, just dilutes It. Magick occurs in moments and flashes, not weeks of frenzied effort to squeeze, stretch and strangle every ounce of joy that your clenched hands can grab.
This is the conversation that “we” had in the van on the way home from our thanksgiving dinner, driving past the premature Christmas lights, on our way to a place where we can figure out what to do next, wishing desperately that we could slow time down in order to hold onto the precious memories that are slipping through our fingers.
Happy Valentine's Day
It took a lot of prep to go in there today. When I talked to him last night at 6:30 as I was leaving work, he was NOT happy. He was very clear on the fact that he's no longer interested in “going on”. He's getting EIGHT injections a day of a medication that is like molten lava. Rich is not a complainer, he has a HIGH threshold for pain and needles don't bother him. He's done. He was crystal clear on the fact that he “will not continue like this. That's 56 shots per week.”
Within the hour before the next injections are due he becomes physically ill with the anticipation of having red hot metal injected into the tops of his thighs. He spent several minutes ranting about the nurses – and this is how I knew we had reached a dangerous depth. His voice is spewing anger as he tells me....
“They come in with these injections and nothing makes it better and every gawd damned time they say “I know, I know, I'm sorry”..... Well, guess what... you DON'T fucking know! YOU don't know! You don't KNOW!”
Those of you who know Rich personally can fathom the horror of hearing him speak like this. I have never heard him speak like this. All I could do was encourage him to vent. He's had enough, there are no answers, there is no plan, there is only this limbo punctuated by eight horrific injections a day. When he seemed done with his spew, I asked him as softly as I could if he wants to stop the fight. I tried to phrase it in such a way that it sounded natural, acceptable, easy and totally okay. There was a long silence, and I've got to point out that it is damn hard to drive on unlit country roads in the dark with a misty rain and your eyes filled with tears and cataracts.
Finally he said, “I can't do this anymore.”
Thanks Be for the Voices in the van, because I heard one of them tell him quite calmly, “Okay, sweetie. I'll be there tomorrow and I'll hold you, and we'll figure out what you want to do next.” Then we spoke of the superficial things that couples speak of at the end of a day that has them parted.
Mostly he was quiet today. I let him be quiet. I did not speak unless spoken to, my goal being that I wanted HIM to feel in control, not being TOLD. After our thanksgiving feast, I crawled into the bed beside him and joined my breathing to his. We were still like that for more than an hour and then he had another wonderful visit from little people—Tessa (14 mos)and Michael (2 mos). I could go on and on about that short visit and what it did for him, but suffice it to say that I know Tessa and I've watched her interact with Rich before, and this time like always she could not take her eyes off him, but she was unusually subdued. It seemed that she plugged right in to the energy and flowed with it.
It so lifted Rich's spirits.
At one point in our visit the endo doctor who is covering for OUR endo doctor came in and spent quite some time with us. She was LOVELY. She continued to reassure us that our doctors have been in contact with all their connections, including Johns Hopkins; Mayo Clinic; Ohio State; some place in Texas and another place in PA that all specialize in pancreatic cancer. The problem is..... wait for it..... Nothing about Rich's current status makes any sense. None of his symptoms (or the lack there of) are providing any information that can lead them towards possible solutions. (welcome to my world of explaining shit that doesn't make sense to people who don't believe you) It was clear that this doctor knew Rich's case inside out and more than once she shook her head and said, “there's not a doctor here that doesn't know about you, Richard. Nothing about you has ever been seen before. But we're working on it.”
We had a couple more hours of curled up in bed together and then his dinner came and he wanted me to start my 40 minute drive before it got really dark.
That's a difficult drive home. Depending on traffic it's 30-40 minutes through inner city Akron out into the boonies thinking about how much time is wasted in traveling.
Just me and the voices in the van.
It was dusk when I left the hospital to go to my van. I had my ticket, pass and cash ready only to discover that it's cheaper to provide free parking than pay for an attendant. Whoo-hoo. Free parking. I wanted to be cheery and grateful about that, but “you know who” pointed out that in the almost three years of hospitalizations I could have fed a third world nation for a week on what I've spent in fuel and parking fees to visit Rich in the hospital. In my humble opinion, a patient's partner should get Free Parking, because we can't pass Go, and we can't collect $200.
It was full on dark by the time I was half way home and it seemed that I passed way too many homes that were fully adorned with Christmas lights. “It's freakin Thanksgiving!!”, one of the voices shouted through the closed side window in the back seat. I couldn't tell if my eyes were watering from stress, emotion, or the glare on my cataracts.
I tried to focus on the concept of “it's freakin Thanksgiving!!” The oncology floor was nearly empty today. I remembered Rich telling me how they were scrambling all day yesterday and this morning to discharge patients home for the holidays. When we strolled the floor together before I left we counted no more than 10 patients roomed, and it seemed that they were patients too old to be aware or care.
I kept driving past joyous-lit houses, some with triangular trees sparkling from front windows. After awhile I felt nothing but confused. It seemed I was driving though a Black Hole of pitiful attempts to rush intention in order to prolong time. Let me know how that works for you.
Starting earlier in order to make It last longer does not make It better. It doesn't work for Weddings, or vacations or Christmas. Starting earlier to make It last longer, just dilutes It. Magick occurs in moments and flashes, not weeks of frenzied effort to squeeze, stretch and strangle every ounce of joy that your clenched hands can grab.
This is the conversation that “we” had in the van on the way home from our thanksgiving dinner, driving past the premature Christmas lights, on our way to a place where we can figure out what to do next, wishing desperately that we could slow time down in order to hold onto the precious memories that are slipping through our fingers.
Happy Valentine's Day
Tuesday, November 22, 2011
Rich isn't coming home
Rich is not coming home. That's what he's told each of his doctors. Not unless or until they can correct this situation to a tolerable level. He explained that his wife can not stay up all night checking his sugar and then go to work all day to make sure we're able to pay the bills. He kindly stated, “I'm not going to put her through this anymore. I'm not leaving here until you get this figured out.”
His doctors agreed and are all over it. Finally my frustration is no longer strangling me. I'm not crazy because they finally get how crazy this is. None of this makes sense. His surgeon, his oncologist and his endocrinologist have all told him that none of the pieces fit into any mosaic that frames an answer. They're all searching from their respective specialties.
Dr A is struggling with the best approach. There are eighteen tumors on the latest CAT scan that could possibly be spewing insulin. Each one would have to be biopsied and sent to the lab while they keep Rich open on the operating table, and waiting for results so they know which one to take out. Dr A says Rich probably would not survive such an endeavor.
His Endo dr is researching at light speed to find anything pharmaceutical that will correct this. There aren't that many options. Dr McGee is working with both of them. All three of them are contacting Mayo Clinic, and other names that Rich could not remember but are experts in their field. All three are in his room daily with little more than encouragement and assurances that they're fighting this as hard as he is. Luckily, right now, that's enough. When all you've got is the best someone can offer, it's enough.
They put a PICC line in. Rich wasn't happy about that, as you can imagine from previous posts. He was surprised at how painful it is, and I had to explain that the last time he had one inserted, he was so “out of it” that he didn't realize it was there for the first two weeks. Yeah, it's painful. They sliced his arm open and stitched a tube into it.
I talked to him Monday around noon. He sounded so down it was all I could do not to burst into tears at my desk. It wasn't anything he said, but I could hear it in his voice all while he was trying to reassure me. Then last night he called me and he sounded like a different man. He'd had a visit from Kenny J.
It's amazing what a 20 month old grandson can do. Rich spent a good twenty minutes laughing as he detailed the visit for me—Kenny saying “bye!” as he crawled into the hospital room closet and closed the door. Waiting for everyone to ask “Where's Kenny?” Then he burst out of the closet, covering his mouth as he laughed. The highlight was when his daddy asked him, “Where's grandpa Rich?” and Kenny pointed to Rich and laughed. That's the medicine I'm talking about.
I canceled our family Thanksgiving. As much as I LOVE preparing that meal and sharing it with our family, I can't do it with Rich in the hospital and unable to be a part of it. Which is not to say that we don't have much to be thankful for. If anyone can fix this, it's his team of doctors and all the wonderful people who are praying for him, and the family and friends who are holding us up.
I'm grateful he's on the oncology floor. Claire Wilson is the best nursing director EVER. I know this because 1) she is one of the best bosses I've ever had, and 2) she has a staff that could teach angels.
I'm grateful that I now have a boss that is everything one hopes for in a boss; and co-workers that make me look forward to going to work.
I'm grateful for the many people who have helped us—emotionally, spiritually and physically. (I just couldn't crawl up on that roof and clean out the gutters!!)
I must admit that I'm not grateful for where Rich is now, twenty-four months past his expiration date not withstanding. I'm in awe of it, but I'm not grateful. He deserves better, and every time he takes another hit like this, I can't help but feel a bit guilty that he's only suffering and fighting because he knows how desperately I don't want him to leave me. You can't watch someone suffer and struggle this hard and long and feel any level of gratitude for it. “Don't piss on my shoes and tell me it's raining.”
Now the elephant in the room is this.... if they can't get this under control, Rich will have to go into a nursing home. If I quit working to take care of him, I'll lose his secondary insurance and we will lose everything so I won't have anywhere to care for him anyway. I can't afford 24 hour home nursing care for him and if he needs me up all night to monitor him, then I sure can't leave him alone while I go to work. The thought of this makes me physically ill. I can't imagine someone of his mental and emotional status surviving in that environment. I have worked in more than one nursing home and my daily prayer to my Creator is “please allow me to go out on the ice before someone can put me in a nursing home.” --it's a First Nation (aka Native American) thing.
Yippy skippy, this is where I'm at. Luckily, I have the distraction of putting in 11 hour days at work to catch up on the time I missed because insurance companies and patients wait for no man. Which leads me to our Tip of The Day......
I drive to work in the dark, I drive home in the dark.....must you wait until you are 50 yards from me to dim your brights?????? Of all the automatic, no-brainer shit gimmicks they can put on a vehicle, can they not program an automatic freakin' DIMMER!?!?!?!?!
His doctors agreed and are all over it. Finally my frustration is no longer strangling me. I'm not crazy because they finally get how crazy this is. None of this makes sense. His surgeon, his oncologist and his endocrinologist have all told him that none of the pieces fit into any mosaic that frames an answer. They're all searching from their respective specialties.
Dr A is struggling with the best approach. There are eighteen tumors on the latest CAT scan that could possibly be spewing insulin. Each one would have to be biopsied and sent to the lab while they keep Rich open on the operating table, and waiting for results so they know which one to take out. Dr A says Rich probably would not survive such an endeavor.
His Endo dr is researching at light speed to find anything pharmaceutical that will correct this. There aren't that many options. Dr McGee is working with both of them. All three of them are contacting Mayo Clinic, and other names that Rich could not remember but are experts in their field. All three are in his room daily with little more than encouragement and assurances that they're fighting this as hard as he is. Luckily, right now, that's enough. When all you've got is the best someone can offer, it's enough.
They put a PICC line in. Rich wasn't happy about that, as you can imagine from previous posts. He was surprised at how painful it is, and I had to explain that the last time he had one inserted, he was so “out of it” that he didn't realize it was there for the first two weeks. Yeah, it's painful. They sliced his arm open and stitched a tube into it.
I talked to him Monday around noon. He sounded so down it was all I could do not to burst into tears at my desk. It wasn't anything he said, but I could hear it in his voice all while he was trying to reassure me. Then last night he called me and he sounded like a different man. He'd had a visit from Kenny J.
It's amazing what a 20 month old grandson can do. Rich spent a good twenty minutes laughing as he detailed the visit for me—Kenny saying “bye!” as he crawled into the hospital room closet and closed the door. Waiting for everyone to ask “Where's Kenny?” Then he burst out of the closet, covering his mouth as he laughed. The highlight was when his daddy asked him, “Where's grandpa Rich?” and Kenny pointed to Rich and laughed. That's the medicine I'm talking about.
I canceled our family Thanksgiving. As much as I LOVE preparing that meal and sharing it with our family, I can't do it with Rich in the hospital and unable to be a part of it. Which is not to say that we don't have much to be thankful for. If anyone can fix this, it's his team of doctors and all the wonderful people who are praying for him, and the family and friends who are holding us up.
I'm grateful he's on the oncology floor. Claire Wilson is the best nursing director EVER. I know this because 1) she is one of the best bosses I've ever had, and 2) she has a staff that could teach angels.
I'm grateful that I now have a boss that is everything one hopes for in a boss; and co-workers that make me look forward to going to work.
I'm grateful for the many people who have helped us—emotionally, spiritually and physically. (I just couldn't crawl up on that roof and clean out the gutters!!)
I must admit that I'm not grateful for where Rich is now, twenty-four months past his expiration date not withstanding. I'm in awe of it, but I'm not grateful. He deserves better, and every time he takes another hit like this, I can't help but feel a bit guilty that he's only suffering and fighting because he knows how desperately I don't want him to leave me. You can't watch someone suffer and struggle this hard and long and feel any level of gratitude for it. “Don't piss on my shoes and tell me it's raining.”
Now the elephant in the room is this.... if they can't get this under control, Rich will have to go into a nursing home. If I quit working to take care of him, I'll lose his secondary insurance and we will lose everything so I won't have anywhere to care for him anyway. I can't afford 24 hour home nursing care for him and if he needs me up all night to monitor him, then I sure can't leave him alone while I go to work. The thought of this makes me physically ill. I can't imagine someone of his mental and emotional status surviving in that environment. I have worked in more than one nursing home and my daily prayer to my Creator is “please allow me to go out on the ice before someone can put me in a nursing home.” --it's a First Nation (aka Native American) thing.
Yippy skippy, this is where I'm at. Luckily, I have the distraction of putting in 11 hour days at work to catch up on the time I missed because insurance companies and patients wait for no man. Which leads me to our Tip of The Day......
I drive to work in the dark, I drive home in the dark.....must you wait until you are 50 yards from me to dim your brights?????? Of all the automatic, no-brainer shit gimmicks they can put on a vehicle, can they not program an automatic freakin' DIMMER!?!?!?!?!
Sunday, November 20, 2011
Today in "This Room in Hell"
I slept yesterday, far longer than a non pregnant and/or new mother should. And I am neither. I slept. The first few hours were a physical replenishing of the sleep I've lost. The last 15 hours was the sleep of someone who has crawled into a dark hole and tried to pull the sod over her head.
I woke this morning and spent the day in a frenzy of cleaning. And I am here to tell you that a hand held Shark steam cleaner, a Kirby, and the Shark floor cleaner is such a fabulous triumvirate that you can accomplish a level of satisfaction that makes you forget the absence of sex. Seriously. Okay, maybe it's the meds.
I get to sleep again tonight. If I take a decent dose of benadryl, the crying into my pillow will not plug me up so bad that I can't wear my C-Pap.
I'm trying to figure out how to go forward, and my options are sorely limited. If the doctors can't fix what's wrong with Rich, then all I know is that he can't come home. I can't take care of him all night long and then work all day long--even if I can arrange for people to take care of him during the day. Geez, I hate this whole being human thing. The alternative is a nightmare that haunts my every breath.
Fortunately I'm floating. I float in faith, and the amazing friendship and family that I have. I float in the absolute knowledge that this is our path and it will lead to where we're meant to be. As sappy as that may sound, that's all I've got. And I'm learning to be incredibly content with that.
I went in to see him this afternoon. He was sleeping. His nephew Eddie was there, I motioned him to follow me out of the room, and we had a such a warm conversation. We came back to the room and the three of us had a nice visit, and then when it was just Rich and me, I curled up in the bed beside him and we snuggled. There wasn't a whole lot to say. After awhile you can no longer comment on the decor of your Room in Hell. We locked on to the NOW of snuggling and holding on to each other....breathing. Breathing into each other. Then the mantra we share ... "we will beat this." We renew our vows daily.
It will be interesting to see what the doctors want to do next. I'm just hoping we get some more time that is not submerged in the sludge of cancer. Maybe that's too much to ask for.
I woke this morning and spent the day in a frenzy of cleaning. And I am here to tell you that a hand held Shark steam cleaner, a Kirby, and the Shark floor cleaner is such a fabulous triumvirate that you can accomplish a level of satisfaction that makes you forget the absence of sex. Seriously. Okay, maybe it's the meds.
I get to sleep again tonight. If I take a decent dose of benadryl, the crying into my pillow will not plug me up so bad that I can't wear my C-Pap.
I'm trying to figure out how to go forward, and my options are sorely limited. If the doctors can't fix what's wrong with Rich, then all I know is that he can't come home. I can't take care of him all night long and then work all day long--even if I can arrange for people to take care of him during the day. Geez, I hate this whole being human thing. The alternative is a nightmare that haunts my every breath.
Fortunately I'm floating. I float in faith, and the amazing friendship and family that I have. I float in the absolute knowledge that this is our path and it will lead to where we're meant to be. As sappy as that may sound, that's all I've got. And I'm learning to be incredibly content with that.
I went in to see him this afternoon. He was sleeping. His nephew Eddie was there, I motioned him to follow me out of the room, and we had a such a warm conversation. We came back to the room and the three of us had a nice visit, and then when it was just Rich and me, I curled up in the bed beside him and we snuggled. There wasn't a whole lot to say. After awhile you can no longer comment on the decor of your Room in Hell. We locked on to the NOW of snuggling and holding on to each other....breathing. Breathing into each other. Then the mantra we share ... "we will beat this." We renew our vows daily.
It will be interesting to see what the doctors want to do next. I'm just hoping we get some more time that is not submerged in the sludge of cancer. Maybe that's too much to ask for.
Saturday, November 19, 2011
Currently on "This Room in Hell"
On our last episode... Rich was admitted November 11th for an overnight stay for twelve hour fasting bloodwork. It didn't go so well. Having explained to them three times that his sugars plummet three hours after eating... well, they just had to see it for themselves.
He was discharged November 16th on three injections per day of ocreotide. This was supposed to keep his sugars up. At 05:00 the next morning I wake to find him sitting on the side of the bed vomiting. Not like you or I would vomit. More like the way a six month old would vomit—totally unaware of the process. He was unresponsive but I did manage to get some orange juice into him, enough so that I could then get some food into him. About a half hour later he was coming around and totally confused by the fact that I was crying. Needless to say, I could not go to work and leave him like that. I waited for the doctor to call me back and tried to figure out how I was going to pull our world back into orbit.
The doctor said to keep an eye on him, which means blood sugars every two to four hours (more on that concept later) and she would see him in the office on Monday, he could wait until then as long as I could revive him, if not, bring him in sooner. She said I should just listen to my comfort zone. I laughed. Out loud. I let her know that I no longer have a comfort zone.
Christy demanded that she be allowed to stay with Rich Friday so I could go to work. She totally gets how stressed I was at the thought of missing a fourth day in two weeks. (PTS from CFM.) I actually felt relieved that I might have a normal day.
At 03:30 on Friday morning I woke because Rich was stirring and making strange noises. Yee-hah. When I tried to assess him, he was speaking gibberish and watching his hand float in the air in front of his face like a butterfly. I can now produce orange juice in a nano second. This time it was a fight to get him to drink it; he was borderline combative, but I triumphed. Then it was getting protein into him, and this time he continued with confusion long enough that I feared he had suffered some brain damage. When he was finally stable I went downstairs, curled up on the couch and cried. Half an hour later he came downstairs, looked at me like I had two heads and asked why I was crying.
Really? Really.
That just made me cry harder. For a good three hours. At some point I realized that I had had about two hours of sleep because every time Rich moved I woke up to make sure he was okay. I called Christy and told her not to bother coming, I was not safe to drive, let alone practice. Why did I think it couldn't get any worse?
Later in the day Christy came over with groceries and wine and settled in for the duration. I almost didn't cringe that someone was in my house and it wasn't spotless. Around eleven I gave Rich his injection, hoping it would mean he would get through the night. Christy told me to find a spot anywhere other than beside Rich and get some sleep—she would keep an eye on him. With her family history of diabetes, I trusted her knowledge and expertise and I curled up on the couch and actually fell asleep.
Less than two hours later she woke me up because Rich was crashing, she couldn't get him to swallow anything, and he sounded like he was drowning. I gave him the emergency injection of glucose, and still nothing. I called 911. It was the same unit that came last time. This time I told them to transport him. I called the doctor and left a message on her service, and Christy drove me to the ER. Denny met us there, and I gradually realized that they were running interference for me. ER staff was going to have to go through Christy and Denny to get to me, and they were going to make sure everything went exactly as I wanted. Sure enough, nothing was done to Rich beyond monitoring and blood work that his doctor ordered over the phone. Rich remembered nothing prior to EMS getting him on the gurney to transport him
Shortly he was admitted to the oncology floor, we got him settled in and Christy took me home, sat up with me till 5:30 in the morning, and cooked me breakfast when I woke up at 10:00. What meant the most to me, sort of, was that I finally had a witness. When I tell someone what this is like, I can tell that they get a sense of what it's like. But hearing about the battle is not the same as smelling the gunpowder and hearing the bullets whiz past your ears. At last someone had witnessed my nightmare and I felt vindicated.
Not sure what happens next. They're talking about another surgery. I'm confused. They still don't know if the pancreas is overproducing insulin, in which case they will surgically remove the tail; or if one or more of the tumors is producing insulin, in which case which one and how do they know they can get the right one? But then, what do I know?
I would just like them to understand that if they're going to discharge him in need of 24-7 care, it will have to be to a place where the staff is greater than one person who needs to sleep on a somewhat regular basis. Where was discharge planning on THAT decision?
On a lighter note, Christy asked me when the doctors would call me. I busted out laughing. Call me What? They don't call me. Certainly you don't mistake me for a person of importance here.
He was discharged November 16th on three injections per day of ocreotide. This was supposed to keep his sugars up. At 05:00 the next morning I wake to find him sitting on the side of the bed vomiting. Not like you or I would vomit. More like the way a six month old would vomit—totally unaware of the process. He was unresponsive but I did manage to get some orange juice into him, enough so that I could then get some food into him. About a half hour later he was coming around and totally confused by the fact that I was crying. Needless to say, I could not go to work and leave him like that. I waited for the doctor to call me back and tried to figure out how I was going to pull our world back into orbit.
The doctor said to keep an eye on him, which means blood sugars every two to four hours (more on that concept later) and she would see him in the office on Monday, he could wait until then as long as I could revive him, if not, bring him in sooner. She said I should just listen to my comfort zone. I laughed. Out loud. I let her know that I no longer have a comfort zone.
Christy demanded that she be allowed to stay with Rich Friday so I could go to work. She totally gets how stressed I was at the thought of missing a fourth day in two weeks. (PTS from CFM.) I actually felt relieved that I might have a normal day.
At 03:30 on Friday morning I woke because Rich was stirring and making strange noises. Yee-hah. When I tried to assess him, he was speaking gibberish and watching his hand float in the air in front of his face like a butterfly. I can now produce orange juice in a nano second. This time it was a fight to get him to drink it; he was borderline combative, but I triumphed. Then it was getting protein into him, and this time he continued with confusion long enough that I feared he had suffered some brain damage. When he was finally stable I went downstairs, curled up on the couch and cried. Half an hour later he came downstairs, looked at me like I had two heads and asked why I was crying.
Really? Really.
That just made me cry harder. For a good three hours. At some point I realized that I had had about two hours of sleep because every time Rich moved I woke up to make sure he was okay. I called Christy and told her not to bother coming, I was not safe to drive, let alone practice. Why did I think it couldn't get any worse?
Later in the day Christy came over with groceries and wine and settled in for the duration. I almost didn't cringe that someone was in my house and it wasn't spotless. Around eleven I gave Rich his injection, hoping it would mean he would get through the night. Christy told me to find a spot anywhere other than beside Rich and get some sleep—she would keep an eye on him. With her family history of diabetes, I trusted her knowledge and expertise and I curled up on the couch and actually fell asleep.
Less than two hours later she woke me up because Rich was crashing, she couldn't get him to swallow anything, and he sounded like he was drowning. I gave him the emergency injection of glucose, and still nothing. I called 911. It was the same unit that came last time. This time I told them to transport him. I called the doctor and left a message on her service, and Christy drove me to the ER. Denny met us there, and I gradually realized that they were running interference for me. ER staff was going to have to go through Christy and Denny to get to me, and they were going to make sure everything went exactly as I wanted. Sure enough, nothing was done to Rich beyond monitoring and blood work that his doctor ordered over the phone. Rich remembered nothing prior to EMS getting him on the gurney to transport him
Shortly he was admitted to the oncology floor, we got him settled in and Christy took me home, sat up with me till 5:30 in the morning, and cooked me breakfast when I woke up at 10:00. What meant the most to me, sort of, was that I finally had a witness. When I tell someone what this is like, I can tell that they get a sense of what it's like. But hearing about the battle is not the same as smelling the gunpowder and hearing the bullets whiz past your ears. At last someone had witnessed my nightmare and I felt vindicated.
Not sure what happens next. They're talking about another surgery. I'm confused. They still don't know if the pancreas is overproducing insulin, in which case they will surgically remove the tail; or if one or more of the tumors is producing insulin, in which case which one and how do they know they can get the right one? But then, what do I know?
I would just like them to understand that if they're going to discharge him in need of 24-7 care, it will have to be to a place where the staff is greater than one person who needs to sleep on a somewhat regular basis. Where was discharge planning on THAT decision?
On a lighter note, Christy asked me when the doctors would call me. I busted out laughing. Call me What? They don't call me. Certainly you don't mistake me for a person of importance here.
Saturday, November 12, 2011
Call me if you need a ride
Rich forgot that he had told me last night that he would call me this morning when he got up. Around 10:30 I stopped my chores and called him. He sounded in exceptionally fine spirits.
He had news. His ICU nurse was setting him up for a Cortisone Stem Test. He explains they will inject “stuff” into him and two hours later they will draw blood. I want to know if he needs to be fasting and how is that going and ….
No, no fasting, he's eating and this test will give them the information they need. No fasting, no problem.
ARE YOU FUCKING KIDDING ME?
I can feel the brain cells exploding in my head. But I can't explode on Rich, so all I can offer is.... “Wow, who stayed up all night to develop this brand new test? ... I must thank them.”
Thankfully my sarcasm is lost on Rich—he's happy and chirpy and making new best friends. I asked him three times to repeat it because I'm thinking he's confused, and what fabric of the universe was ripped open last night to get us from there to here? My head is spinning. He asks his nurse and I hear her faintly in the background and he repeats it to me. Really? Really. “Yeah,” he says, “they decided they can't do the tests they want because my blood sugar drops too low if I'm fasting. It was 38 yesterday and they couldn't rouse me.” Really? Really.... So now they're going to do THIS test and it should give them what they need.
He then asks me when I'm coming in to see him. I can FEEL my frontal lobe attempt light, non-sensical responses while the deeper part of my survival brain cells scramble for an excuse, any excuse not to have a close encounter with his health care professionals.
No worries, he is happily distracted by his efforts to charm his nurse. I just want OFF the phone because I feel like I need to throw up and I prefer some privacy for that.
Then he tells me, “no rush, the nurses are going to come in and help me get cleaned up.”
Shit. I forgot to muzzle Scrapper.
“What? Your arms are broke?” I tried to chuckle and present it all as a joke but I couldn't get the muzzle back on... “I think you can get washed up by yourself dear. The nurses are busy.”
He assures me that they offered, and Scrapper is yapping at my heels wanting to know if his golf buddies follow him into the woods when he needs to.... SHUT UP, Scrapper, and then Rich tells me what he'd like me to bring to him when I come in and I was PLEASANT.
We end the conversation with me telling him I'm washing the windows of the kitty spit, doing laundry, dishes and trying to catch up on all the things that have not gotten done since Wednesday night. “Love you.....” “Love you, too.”
Fuck, fuck Fuck, Fuck, Fuck. It's like my new mantra.
Does anyone catch my dilemma here????
I would love to go in and see my husband. I want to see him fluffed up and comfy in his ICU bed and hear the nurses tell me how amazing and wonderful he is. I do. Because....well.... it's just something I never get tired of. My dilemma is—I just don't think I can experience that level of Joy without throwing up on their shoes. Worse, what if one of his doctors comes in to bring me up to date on all the things they've endured because they refused to listen to me and how they are now going to fix the problem that I warned them about before it happened. No wait. More “worser”.... How will I placidly listen to them explain this brilliant 2 hour, non-fasting Cortisone Stem test that just became available TODAY? I fear I might tremble in the sight of their brilliance and wet myself.
Contemplating the past, present and future; factoring in my limited knowledge of quantum physics, parallel universes, multiple dimensions and “S= K log W”...... I feel strongly that it would be in everyone's best interest, least of all my own, if I removed myself from the gravitational pull of the work they are doing. Rich needs a break from me. I must not be a pebble in the doctors' shoes.
I think it best if I continue to clean and fluff the nest so it is ready when Rich flies away home.
It's a no brainer...if I fail to visit him, I'm a heartless bitch; if I visit him and fail to swallow I'm a nauseated heartless bitch; if I challenge, question or speak up, I'm a raging heartless bitch... No matter what course I take I am a heartless bitch. I choose asking forgiveness over asking permission.
I need to learn to embrace the empowerment of boundaries. They do not come into my space, I should not enter theirs. They bring their skill set to the healing of Rich and I bring mine. I don't need their respect, neither do I need their negativity.
I'm here, Rich. Feathering the nest and recharging my battery.
Call me if you need a ride.
He had news. His ICU nurse was setting him up for a Cortisone Stem Test. He explains they will inject “stuff” into him and two hours later they will draw blood. I want to know if he needs to be fasting and how is that going and ….
No, no fasting, he's eating and this test will give them the information they need. No fasting, no problem.
ARE YOU FUCKING KIDDING ME?
I can feel the brain cells exploding in my head. But I can't explode on Rich, so all I can offer is.... “Wow, who stayed up all night to develop this brand new test? ... I must thank them.”
Thankfully my sarcasm is lost on Rich—he's happy and chirpy and making new best friends. I asked him three times to repeat it because I'm thinking he's confused, and what fabric of the universe was ripped open last night to get us from there to here? My head is spinning. He asks his nurse and I hear her faintly in the background and he repeats it to me. Really? Really. “Yeah,” he says, “they decided they can't do the tests they want because my blood sugar drops too low if I'm fasting. It was 38 yesterday and they couldn't rouse me.” Really? Really.... So now they're going to do THIS test and it should give them what they need.
He then asks me when I'm coming in to see him. I can FEEL my frontal lobe attempt light, non-sensical responses while the deeper part of my survival brain cells scramble for an excuse, any excuse not to have a close encounter with his health care professionals.
No worries, he is happily distracted by his efforts to charm his nurse. I just want OFF the phone because I feel like I need to throw up and I prefer some privacy for that.
Then he tells me, “no rush, the nurses are going to come in and help me get cleaned up.”
Shit. I forgot to muzzle Scrapper.
“What? Your arms are broke?” I tried to chuckle and present it all as a joke but I couldn't get the muzzle back on... “I think you can get washed up by yourself dear. The nurses are busy.”
He assures me that they offered, and Scrapper is yapping at my heels wanting to know if his golf buddies follow him into the woods when he needs to.... SHUT UP, Scrapper, and then Rich tells me what he'd like me to bring to him when I come in and I was PLEASANT.
We end the conversation with me telling him I'm washing the windows of the kitty spit, doing laundry, dishes and trying to catch up on all the things that have not gotten done since Wednesday night. “Love you.....” “Love you, too.”
Fuck, fuck Fuck, Fuck, Fuck. It's like my new mantra.
Does anyone catch my dilemma here????
I would love to go in and see my husband. I want to see him fluffed up and comfy in his ICU bed and hear the nurses tell me how amazing and wonderful he is. I do. Because....well.... it's just something I never get tired of. My dilemma is—I just don't think I can experience that level of Joy without throwing up on their shoes. Worse, what if one of his doctors comes in to bring me up to date on all the things they've endured because they refused to listen to me and how they are now going to fix the problem that I warned them about before it happened. No wait. More “worser”.... How will I placidly listen to them explain this brilliant 2 hour, non-fasting Cortisone Stem test that just became available TODAY? I fear I might tremble in the sight of their brilliance and wet myself.
Contemplating the past, present and future; factoring in my limited knowledge of quantum physics, parallel universes, multiple dimensions and “S= K log W”...... I feel strongly that it would be in everyone's best interest, least of all my own, if I removed myself from the gravitational pull of the work they are doing. Rich needs a break from me. I must not be a pebble in the doctors' shoes.
I think it best if I continue to clean and fluff the nest so it is ready when Rich flies away home.
It's a no brainer...if I fail to visit him, I'm a heartless bitch; if I visit him and fail to swallow I'm a nauseated heartless bitch; if I challenge, question or speak up, I'm a raging heartless bitch... No matter what course I take I am a heartless bitch. I choose asking forgiveness over asking permission.
I need to learn to embrace the empowerment of boundaries. They do not come into my space, I should not enter theirs. They bring their skill set to the healing of Rich and I bring mine. I don't need their respect, neither do I need their negativity.
I'm here, Rich. Feathering the nest and recharging my battery.
Call me if you need a ride.
A Dining Experience
While I'm waiting to find out what the AMA has planned for us today, I thought I'd let you know how our Fifteenth Anniversary dinner went last weekend. I should be doing chores right now, but blogging the experience will be good practice for the letter I plan to write to the head of the company.
All by himself, Rich made reservations at a top notch steak house in Fairlawn. He decided to do something totally different—somewhere we'd never been. He selected the place because a few years ago I had visited one of these restaurants while in Columbus., OH and talked about how wonderful it was for weeks. Impeccable food and probably the best dining service I had ever received. Needless to say, we were looking forward to the evening. Rich told the gentleman on the phone that this was a special wedding anniversary for us...
Last Saturday came and as always I was on pins and needles just because it's hard to make plans when you never know how the cancer wants to play. As the day wore on I tried to stay positive while I prepared myself for the disappointment of not going. Rich's blood sugars were all over the place, I kept nagging him to eat every couple of hours. All he wanted to do was sleep. He had several two hour naps. At four o'clock I started hinting that we might want to cancel our 6:30 reservations, but Rich was having NONE of that.
I kept moving forward, preparing to stop. I actually got dressed up. Hope ya'll are sitting down because I wore a dress. Rich struggled and managed to get a shower and dressed, and by the time we left the house his smile seemed genuine.
We arrive on the dot and are shown to our romantic table for two. Red Flag number One. They seated us at one of those curved booth tables that seat six side by side. I'll repeat that. The only way to sit was side by side. So much for that all-critical, courtship eye contact that they talk about on the Discovery Channel. The girl who seated us struggled to pull it out far enough for us to slide in. I'm thinking if Rich has to dash to the restroom we're screwed.
After awhile we asked for and received water, Rich received his beer in a bottle and I was curious as to why all the other diners received chilled Pilsner glasses. But not Rich. Red Flags Two Three and Four.
Our salads arrived on HOT plates—probably just out of the dishwasher so, woo-hoo, they're clean!!!
By this time, and we were sipping, we were ready for another drink. But nobody asked.
Sitting side by side as we were it was more like being in a movie than a romantic dinner. I tried to distract myself by watching the dining room in front of us and listing to the kitchen chatter directly behind us. Rich pointed out the Happy Anniversary card sitting on our table. That's nice.
Gradually my attention is focused to the table directly in front of with six happy diners who are being doted on by our shared waiter. With an open bottle of wine on their table, he scurried around to make sure he kept their glasses at their proper level; scurried away and returned with more bread; whisked away dirty plates and glasses. At 7:50 I turned to Rich and tried to smile, which probably didn't look like a smile because when I have to rotate my neck 90 degrees I get a shooting pain down my right arm.
The gift of a fifteen year honeymoon is that he can often read my mind, and once in awhile he does it at the right time. We grabbed our coats (no, no one offered to take them at the front) and muscled our way out from behind our table. By the time we reached the front desk, three people in suits descended upon us and I was almost disappointed that they weren't security threatening to charge me for walking the bill. But no.
Rich tells me that I don't understand what happens when I get truly angry. He says my voice gets so quiet you have to lean in to hear me, and every word slips out like honey wrapped in a snarl, fire comes out of my eyes, smoke comes out of my ears, and in general I exude an energy that would back down the Devil. I don't know about that, I just wanted the bill. That's when they wanted to know what was wrong, it went like this:
“Nothing's wrong”, I smiled, “I just want the bill so we can leave.”
Asshole no. 2: “No, no, we want to know what's wrong.”
ME: “Apparently our presence is creating a hardship for your staff, so we're going to correct that.”
Asshole no. 3: “Oh no, we'll clear the check.”
Meanwhile Rich is explaining to Asshole No. 1 the details of our 80 minute dining experience.
ME: “I did not come here for a free meal. We came for a special occasion. I'd like to pay for what we received.”
Asshole no 2. “Wasn't your table decorated?”
At that, I could begin to feel the heat coming off me. I just looked at him like he had two heads.
Now Asshole no 3. comes running back to the scene from the netherworld and announces with great relief that our meals are now ready and being boxed up for us.
ME: “Sir, you REALLY do not want me to tell you where to place those meals.”
Asshole No 1. still wants to discuss things.
ME: “Look, you folks are way too busy here to be disturbed by us. Have a nice night.”
When he forced his business card into my hand and asked me to call him later because he just wants to make this right...... I almost pulled the muzzle off of Scrapper. Instead I moved closer to him and he backed up and I whispered “You have no idea what happened here and YOU can't fix it.”
All I remember are the words that were exchanged. Rich had to explain how it went down from an observer's (his) perspective. For me, I wouldn't even recognize them if I ran into them again. For me it was like experiencing the whole thing through billowing red gauze. All the way home I kept asking Rich, “I didn't raise my voice, did I?” “I didn't embarrass you, did I?” Rich just laughed. He said he didn't say much because it was more fun to watch me. I've had so much practice I could teach a Doctoral course in idiots and assholes.
On the way home we decided to stop at our favorite place—Prime 93 on Manchester Road in Portage Lakes. THEY made it right.
All by himself, Rich made reservations at a top notch steak house in Fairlawn. He decided to do something totally different—somewhere we'd never been. He selected the place because a few years ago I had visited one of these restaurants while in Columbus., OH and talked about how wonderful it was for weeks. Impeccable food and probably the best dining service I had ever received. Needless to say, we were looking forward to the evening. Rich told the gentleman on the phone that this was a special wedding anniversary for us...
Last Saturday came and as always I was on pins and needles just because it's hard to make plans when you never know how the cancer wants to play. As the day wore on I tried to stay positive while I prepared myself for the disappointment of not going. Rich's blood sugars were all over the place, I kept nagging him to eat every couple of hours. All he wanted to do was sleep. He had several two hour naps. At four o'clock I started hinting that we might want to cancel our 6:30 reservations, but Rich was having NONE of that.
I kept moving forward, preparing to stop. I actually got dressed up. Hope ya'll are sitting down because I wore a dress. Rich struggled and managed to get a shower and dressed, and by the time we left the house his smile seemed genuine.
We arrive on the dot and are shown to our romantic table for two. Red Flag number One. They seated us at one of those curved booth tables that seat six side by side. I'll repeat that. The only way to sit was side by side. So much for that all-critical, courtship eye contact that they talk about on the Discovery Channel. The girl who seated us struggled to pull it out far enough for us to slide in. I'm thinking if Rich has to dash to the restroom we're screwed.
After awhile we asked for and received water, Rich received his beer in a bottle and I was curious as to why all the other diners received chilled Pilsner glasses. But not Rich. Red Flags Two Three and Four.
Our salads arrived on HOT plates—probably just out of the dishwasher so, woo-hoo, they're clean!!!
By this time, and we were sipping, we were ready for another drink. But nobody asked.
Sitting side by side as we were it was more like being in a movie than a romantic dinner. I tried to distract myself by watching the dining room in front of us and listing to the kitchen chatter directly behind us. Rich pointed out the Happy Anniversary card sitting on our table. That's nice.
Gradually my attention is focused to the table directly in front of with six happy diners who are being doted on by our shared waiter. With an open bottle of wine on their table, he scurried around to make sure he kept their glasses at their proper level; scurried away and returned with more bread; whisked away dirty plates and glasses. At 7:50 I turned to Rich and tried to smile, which probably didn't look like a smile because when I have to rotate my neck 90 degrees I get a shooting pain down my right arm.
The gift of a fifteen year honeymoon is that he can often read my mind, and once in awhile he does it at the right time. We grabbed our coats (no, no one offered to take them at the front) and muscled our way out from behind our table. By the time we reached the front desk, three people in suits descended upon us and I was almost disappointed that they weren't security threatening to charge me for walking the bill. But no.
Rich tells me that I don't understand what happens when I get truly angry. He says my voice gets so quiet you have to lean in to hear me, and every word slips out like honey wrapped in a snarl, fire comes out of my eyes, smoke comes out of my ears, and in general I exude an energy that would back down the Devil. I don't know about that, I just wanted the bill. That's when they wanted to know what was wrong, it went like this:
“Nothing's wrong”, I smiled, “I just want the bill so we can leave.”
Asshole no. 2: “No, no, we want to know what's wrong.”
ME: “Apparently our presence is creating a hardship for your staff, so we're going to correct that.”
Asshole no. 3: “Oh no, we'll clear the check.”
Meanwhile Rich is explaining to Asshole No. 1 the details of our 80 minute dining experience.
ME: “I did not come here for a free meal. We came for a special occasion. I'd like to pay for what we received.”
Asshole no 2. “Wasn't your table decorated?”
At that, I could begin to feel the heat coming off me. I just looked at him like he had two heads.
Now Asshole no 3. comes running back to the scene from the netherworld and announces with great relief that our meals are now ready and being boxed up for us.
ME: “Sir, you REALLY do not want me to tell you where to place those meals.”
Asshole No 1. still wants to discuss things.
ME: “Look, you folks are way too busy here to be disturbed by us. Have a nice night.”
When he forced his business card into my hand and asked me to call him later because he just wants to make this right...... I almost pulled the muzzle off of Scrapper. Instead I moved closer to him and he backed up and I whispered “You have no idea what happened here and YOU can't fix it.”
All I remember are the words that were exchanged. Rich had to explain how it went down from an observer's (his) perspective. For me, I wouldn't even recognize them if I ran into them again. For me it was like experiencing the whole thing through billowing red gauze. All the way home I kept asking Rich, “I didn't raise my voice, did I?” “I didn't embarrass you, did I?” Rich just laughed. He said he didn't say much because it was more fun to watch me. I've had so much practice I could teach a Doctoral course in idiots and assholes.
On the way home we decided to stop at our favorite place—Prime 93 on Manchester Road in Portage Lakes. THEY made it right.
Friday, November 11, 2011
We interrupt this Blog for a message from our Complaint Department...
Hi-dee-ho. Scrapper Here.....
Bite me.
Responding to the complaints that the blog has become too negative, I offer the following:
Are you fucking kidding me?
Number One: go back and read our Disclaimer. Don't think you've got a lawsuit for stress resulting from reading this blog. Unless, of course, there's a commercial for the lawyer who won't get paid until you get paid and this blog is causing cancer. You'll need proof. We would be happy to recommend the medical experts who can make THAT happen for you.
B: We're not responsible if your computer came without a Delete button. Contact the manufacturer. The Blog does not stream into your space; it's not even that easy to find.
ALSO: Step away from the pain.
#4. What part of the Mission Statement of this blog did you not get?!?! Nowhere does it state that our goal is to put a romantic, rosy spin on fighting cancer. It's a FIGHT, asshole. Not pretty. This is a spew of fear mingled with frustration, coated in love, drowning in tears, waiting for Godot. The purpose being to purge the negative in order to continue the fight. Move along. Do not slow down to stare at the wreck and then bitch about the traffic. You probably think reality TV is real.
C. As for the postings that slip past Radar and don't get edited and spell-checked before posting..... Bite me Twice. I have been in the room when patients have literally thrown up on her and her focus remained on comforting them, so if she needs to throw up on her blog and you don't need a dry-cleaner as a result.... SHUT UP. What do you think your “reality” shows would look like without editing?
#5) If you think you can do a better job with this situation, bring your A game and show your stuff, because thousands could benefit from your wisdom and expertise. Don't hide your light under a basket! You get bonus points if you can do it sleep-deprived.
We appreciate your comments and input as we strive to make sure that nothing about this blog makes YOU uncomfortable. NOT. But hey, keep those emails and comments coming, because the more you send, the more often I'm let off my leash.
Sincerely,
Scrapper.
VP of Customer Service
Bite me.
Responding to the complaints that the blog has become too negative, I offer the following:
Are you fucking kidding me?
Number One: go back and read our Disclaimer. Don't think you've got a lawsuit for stress resulting from reading this blog. Unless, of course, there's a commercial for the lawyer who won't get paid until you get paid and this blog is causing cancer. You'll need proof. We would be happy to recommend the medical experts who can make THAT happen for you.
B: We're not responsible if your computer came without a Delete button. Contact the manufacturer. The Blog does not stream into your space; it's not even that easy to find.
ALSO: Step away from the pain.
#4. What part of the Mission Statement of this blog did you not get?!?! Nowhere does it state that our goal is to put a romantic, rosy spin on fighting cancer. It's a FIGHT, asshole. Not pretty. This is a spew of fear mingled with frustration, coated in love, drowning in tears, waiting for Godot. The purpose being to purge the negative in order to continue the fight. Move along. Do not slow down to stare at the wreck and then bitch about the traffic. You probably think reality TV is real.
C. As for the postings that slip past Radar and don't get edited and spell-checked before posting..... Bite me Twice. I have been in the room when patients have literally thrown up on her and her focus remained on comforting them, so if she needs to throw up on her blog and you don't need a dry-cleaner as a result.... SHUT UP. What do you think your “reality” shows would look like without editing?
#5) If you think you can do a better job with this situation, bring your A game and show your stuff, because thousands could benefit from your wisdom and expertise. Don't hide your light under a basket! You get bonus points if you can do it sleep-deprived.
We appreciate your comments and input as we strive to make sure that nothing about this blog makes YOU uncomfortable. NOT. But hey, keep those emails and comments coming, because the more you send, the more often I'm let off my leash.
Sincerely,
Scrapper.
VP of Customer Service
Can I get a Revolving Door Installed here?
Rich was admitted this morning. That sentence alone should be enough to let you know that I cannot consume enough Scotch to keep my head from exploding. Why, you ask? Because no matter how many times I have to take the bus to Stupidville, it just never gets old. Always new sites to see and new people to meet.
First off, I had some concerns because they recently fired all of their (seventy-plus) LPNs. Apparently, overworking their RN's and relying more on nursing assistants who are addicted to their iPhones seems like a cost effective way to go. I kept my concerns to myself.
Out of the gate we sit at the Admissions desk where we learn that the insurance Rich has had for 20+ years has mismatched policy numbers. The number on his card does not match the number in their computer. I could write another five pages on this situation, but why bother.....why bother....
Then we get up to his room. Because somebody was called over to walk us up to the room. Despite the fact that I assured him I had worked here for over five years and we could find our way. Nope. Someone had to escort us up to his room. Where there was no pillow OR blanket, but there was a washcloth folded into the shape of a teddy bear. I was impressed. I'm just relieved that these cost-cutting measures are working.
The RN –who was lovely—did his admission. Directly on the computer. And while I understand that sometimes things change, I don't understand why I have to explain who his doctors are and his diagnoses and what procedures he has already had done AT THIS FACILITY.
So all the admission stuff is done and Rich lays down because part of what's going on causes him to be either sleeping or exhausted. I read while we waited for somebody to get this show on the road, and it was not too much later that the Hospitalist came in and I liked that he first introduced himself, shook our hands and then pulled up a chair and sat next to Rich. He did an extremely thorough intake, including my detailed account of Wednesday night and the past 2-3 weeks of this situations, and that's when I should have left, my hopes intact. But no. For a foggy, sleep-deprived moment, I don't recognize that I really am in Stupidville.
We are now at the point where Dr. P starts explaining what they're going to do. A twelve hour fast, with blood draws at critical points because this information will tell them what's causing the constant flood of insulin in his body—the liver is not releasing sugar or there are tumors producing insulin. Distracted by his excellent first impression and the origami terry cloth bear perched next to him, I have confidence in asking a couple of questions......
I explained YET AGAIN, that if Rich goes more than 3 hours without eating, his blood sugar drops into the forties. When I found him Wednesday night it was 31, and at most that was a 10 hour fast. So, and here's my question, “how are you going to do a 12 hour fast and keep him from going into hypoglycemic shock?” Dr. P just stared at me with the too familiar expression that tells me I have just spoken a foreign language.
I decided to throw him a bone. And asked....”how often will you be checking his blood sugars,” because, AND I'm PROVIDING THIS INFORMATION AGAIN.... “he will not have any symptoms.”
Dr P rattled off the signs and symptoms of hypoglycemia AGAIN, and Rich and I both shook our heads with each one AGAIN. So I 'splained it again, Lucy. “He does not have any signs of hypoglycemia. He closes his eyes and goes to sleep and you won't know he's in trouble unless you check his sugars, OR he reaches the point of death-rattle breathing, gurgling, foaming at the mouth and unresponsive. “
You would think that after last year's sepsis sans symptoms, I could get them to understand that Rich doesn't have symptoms. I suspect this is because he doesn't want to inconvenience anyone so he just swallows it all down, which according to my scientific research, is why he developed pancreatic cancer in the first place.
Now Dr. P looks at me like not only I'm a speaking a foreign language but he'd really like me to just leave the room. Wait for it....
the Babble fish kicked in and Dr P decides to respond to me with “I can order 2 hour blood sugars, but that's not going to make the staff very happy.” The words were wrapped in just enough of a smile that I wasn't sure if he was failing at humor or calling me demanding and/or stupid.
I explain AGAIN how this has been working---”I'm not saying you have to test him every two hours, I'm just suggesting you might want to come in, check him, make sure he wakes up”, and if you pull your nursing assistants away from their iPhones, I think they can handle that task. Sorry. I can't forget the night Rich spent 45 minutes on a bedside commode and the nursing assistant came into his room texting.
But Dr P has a better idea. “How about you stay the night and check him every two hours.” I swear to god it sounded like an innocent suggestion but my head wanted to explode. I smiled sweetly and explained that “I've been doing the two hour gig non-stop since Wednesday night, so I'd sort of like to get some sleep.” Because when I get the bill for this trip, I'm going to be a little pissed that it's not discounted for my services.
My next question is “You're going to put a hep-lock in, right?” (That's an IV access that's waiting and ready if needed) Again someone looking at my two heads. I splain it for him, Lucy..... “When he crashes during this 12 hour fast, I'm just thinking you might want that IV access quickly, and I'm just letting you know he's a very difficult stick” He nods and writes on the chart, which could be a hep-lock order OR “wife is pain in the ass.”
We've pretty much covered everything to the Doctor's satisfaction. Rich is exhausted, I'm exhausted, and repeating a thing don't make it better so I'm ready to go home and Rich wants to sleep. We are now 2 hours 45 minutes from last food consumption. Since I didn't think to bring my video camera, I don't need to stick around and watch this parade, and there's going to be a huge bill for someone else to clean up the elephant poop, so....I'm good. It's 11:30, I'm leaving. I warned you people. In triplicate.
Around 3 pm the phone rings. I cannot explain what a bone jarring sound that is when you're half asleep and part of your brain is programmed to be ready for a call from the hospital.
It was Rich. He sounded drunk, which meant he could only do a half-assed job of telling me what was going on.
“They were running around like crazy, Pupshn. They kept running in and out of my room and giving me shots. They said I can't stay here. They're moving me to intensive care. ...I don't know what they're doing....” Click.
Geez. Sorry I missed that. The Elephant pooped and I wasn't there to see it.
The only reason I didn't call the hospital is because I'm thinking they really don't need any distractions right now. An hour later I get a call from his nurse to let me know that he's being moved to ICU because they don't have enough staff to do two hour checks. Right now I cannot even comment on that because I can't get past the 72 LPN's who lost their jobs. Neither can I get past the fact that I warned these people how it was going to go down, so how did you not know at admission that you couldn't handle two hour checks?!?!?!
Another hour later and Rich calls me to tell me where he is and what happened according to what he was told because he doesn't remember SHIT about it. He sounds good. Because he's been eating. So the bad news is, he has to eat the hospital food anyway. Update goes like this.... the doctor's now have no idea what they're going to do because they couldn't collect the fasting data they needed. They want to know if this problem is the result of the liver not releasing glucose, or tumors starting to produce insulin, and that requires 12 hour fasting bloodwork. And they seemed shocked that their plan didn't work. It was a good plan!
Well, here's a plan. I call it “What the Fuck?!?!?” Either the liver isn't working or tumors are producing insulin. Either way, I don't care. FIX IT! If you can put a goddamned pump in someone to release insulin as needed, why can't you insert a pump to release a steady flow of dextrose as needed?
Whatever, nobody's listening to me anyway.
A definition of insanity is repeating a behavior with the expectation of a different outcome. Doesn't look good for me, now does it?
Last night, as we're bracing ourselves for the return to Stupidville, I asked Rich if he remembered anything from Wednesday night. Mainly I wanted to know if he'd had any awareness, fear, pain or discomfort. No to all. Shit. That is information I should not have been given.
In hindsight, I've been asking myself all evening if I did the right thing Wednesday night. I'll admit it. For a split second before calling 911, I thought of crawling into bed with him and just holding him until it was over. It was barely a complete thought, not even recognizable until after the fact. In remembering that nano-second I realize I didn't call 911 for Rich. I called for me. Because I'm not ready to be here without him.
First off, I had some concerns because they recently fired all of their (seventy-plus) LPNs. Apparently, overworking their RN's and relying more on nursing assistants who are addicted to their iPhones seems like a cost effective way to go. I kept my concerns to myself.
Out of the gate we sit at the Admissions desk where we learn that the insurance Rich has had for 20+ years has mismatched policy numbers. The number on his card does not match the number in their computer. I could write another five pages on this situation, but why bother.....why bother....
Then we get up to his room. Because somebody was called over to walk us up to the room. Despite the fact that I assured him I had worked here for over five years and we could find our way. Nope. Someone had to escort us up to his room. Where there was no pillow OR blanket, but there was a washcloth folded into the shape of a teddy bear. I was impressed. I'm just relieved that these cost-cutting measures are working.
The RN –who was lovely—did his admission. Directly on the computer. And while I understand that sometimes things change, I don't understand why I have to explain who his doctors are and his diagnoses and what procedures he has already had done AT THIS FACILITY.
So all the admission stuff is done and Rich lays down because part of what's going on causes him to be either sleeping or exhausted. I read while we waited for somebody to get this show on the road, and it was not too much later that the Hospitalist came in and I liked that he first introduced himself, shook our hands and then pulled up a chair and sat next to Rich. He did an extremely thorough intake, including my detailed account of Wednesday night and the past 2-3 weeks of this situations, and that's when I should have left, my hopes intact. But no. For a foggy, sleep-deprived moment, I don't recognize that I really am in Stupidville.
We are now at the point where Dr. P starts explaining what they're going to do. A twelve hour fast, with blood draws at critical points because this information will tell them what's causing the constant flood of insulin in his body—the liver is not releasing sugar or there are tumors producing insulin. Distracted by his excellent first impression and the origami terry cloth bear perched next to him, I have confidence in asking a couple of questions......
I explained YET AGAIN, that if Rich goes more than 3 hours without eating, his blood sugar drops into the forties. When I found him Wednesday night it was 31, and at most that was a 10 hour fast. So, and here's my question, “how are you going to do a 12 hour fast and keep him from going into hypoglycemic shock?” Dr. P just stared at me with the too familiar expression that tells me I have just spoken a foreign language.
I decided to throw him a bone. And asked....”how often will you be checking his blood sugars,” because, AND I'm PROVIDING THIS INFORMATION AGAIN.... “he will not have any symptoms.”
Dr P rattled off the signs and symptoms of hypoglycemia AGAIN, and Rich and I both shook our heads with each one AGAIN. So I 'splained it again, Lucy. “He does not have any signs of hypoglycemia. He closes his eyes and goes to sleep and you won't know he's in trouble unless you check his sugars, OR he reaches the point of death-rattle breathing, gurgling, foaming at the mouth and unresponsive. “
You would think that after last year's sepsis sans symptoms, I could get them to understand that Rich doesn't have symptoms. I suspect this is because he doesn't want to inconvenience anyone so he just swallows it all down, which according to my scientific research, is why he developed pancreatic cancer in the first place.
Now Dr. P looks at me like not only I'm a speaking a foreign language but he'd really like me to just leave the room. Wait for it....
the Babble fish kicked in and Dr P decides to respond to me with “I can order 2 hour blood sugars, but that's not going to make the staff very happy.” The words were wrapped in just enough of a smile that I wasn't sure if he was failing at humor or calling me demanding and/or stupid.
I explain AGAIN how this has been working---”I'm not saying you have to test him every two hours, I'm just suggesting you might want to come in, check him, make sure he wakes up”, and if you pull your nursing assistants away from their iPhones, I think they can handle that task. Sorry. I can't forget the night Rich spent 45 minutes on a bedside commode and the nursing assistant came into his room texting.
But Dr P has a better idea. “How about you stay the night and check him every two hours.” I swear to god it sounded like an innocent suggestion but my head wanted to explode. I smiled sweetly and explained that “I've been doing the two hour gig non-stop since Wednesday night, so I'd sort of like to get some sleep.” Because when I get the bill for this trip, I'm going to be a little pissed that it's not discounted for my services.
My next question is “You're going to put a hep-lock in, right?” (That's an IV access that's waiting and ready if needed) Again someone looking at my two heads. I splain it for him, Lucy..... “When he crashes during this 12 hour fast, I'm just thinking you might want that IV access quickly, and I'm just letting you know he's a very difficult stick” He nods and writes on the chart, which could be a hep-lock order OR “wife is pain in the ass.”
We've pretty much covered everything to the Doctor's satisfaction. Rich is exhausted, I'm exhausted, and repeating a thing don't make it better so I'm ready to go home and Rich wants to sleep. We are now 2 hours 45 minutes from last food consumption. Since I didn't think to bring my video camera, I don't need to stick around and watch this parade, and there's going to be a huge bill for someone else to clean up the elephant poop, so....I'm good. It's 11:30, I'm leaving. I warned you people. In triplicate.
Around 3 pm the phone rings. I cannot explain what a bone jarring sound that is when you're half asleep and part of your brain is programmed to be ready for a call from the hospital.
It was Rich. He sounded drunk, which meant he could only do a half-assed job of telling me what was going on.
“They were running around like crazy, Pupshn. They kept running in and out of my room and giving me shots. They said I can't stay here. They're moving me to intensive care. ...I don't know what they're doing....” Click.
Geez. Sorry I missed that. The Elephant pooped and I wasn't there to see it.
The only reason I didn't call the hospital is because I'm thinking they really don't need any distractions right now. An hour later I get a call from his nurse to let me know that he's being moved to ICU because they don't have enough staff to do two hour checks. Right now I cannot even comment on that because I can't get past the 72 LPN's who lost their jobs. Neither can I get past the fact that I warned these people how it was going to go down, so how did you not know at admission that you couldn't handle two hour checks?!?!?!
Another hour later and Rich calls me to tell me where he is and what happened according to what he was told because he doesn't remember SHIT about it. He sounds good. Because he's been eating. So the bad news is, he has to eat the hospital food anyway. Update goes like this.... the doctor's now have no idea what they're going to do because they couldn't collect the fasting data they needed. They want to know if this problem is the result of the liver not releasing glucose, or tumors starting to produce insulin, and that requires 12 hour fasting bloodwork. And they seemed shocked that their plan didn't work. It was a good plan!
Well, here's a plan. I call it “What the Fuck?!?!?” Either the liver isn't working or tumors are producing insulin. Either way, I don't care. FIX IT! If you can put a goddamned pump in someone to release insulin as needed, why can't you insert a pump to release a steady flow of dextrose as needed?
Whatever, nobody's listening to me anyway.
A definition of insanity is repeating a behavior with the expectation of a different outcome. Doesn't look good for me, now does it?
Last night, as we're bracing ourselves for the return to Stupidville, I asked Rich if he remembered anything from Wednesday night. Mainly I wanted to know if he'd had any awareness, fear, pain or discomfort. No to all. Shit. That is information I should not have been given.
In hindsight, I've been asking myself all evening if I did the right thing Wednesday night. I'll admit it. For a split second before calling 911, I thought of crawling into bed with him and just holding him until it was over. It was barely a complete thought, not even recognizable until after the fact. In remembering that nano-second I realize I didn't call 911 for Rich. I called for me. Because I'm not ready to be here without him.
Thursday, November 10, 2011
"repeating a thing doesn't make it better"
“How long has he been like this?”
I don't know, I got home from work and found him like this.
I worked late today, because my work has been piling up because Oct 1st Medicaid changed their formulary so they're rejecting 80% of the prescriptions the doctor writes and patients need their meds, and yada, yada, yada....
I have had my ass chewed by patients this week like you can not imagine because I'm not jumping through hoops fast enough or with the correct landing and it's just been unbelievable.
Three weeks ago I started my game plan to get Rich to call the doctor, any doctor, because he's not feeling well, and at the result of my gawd-damned bitching and demanding he takes his blood sugar and it is WAY too low. Repeatedly. For three weeks, results all over the place, So my campaign begins and carries on.
As per usual, I get ready to leave work at 18 :30 and call to let him know. No answer. Okay, so maybe he's in the potty, or maybe on his phone.
Fifteen minutes into my 45 minute commute I have a vision of how I will find him. Then I struggle mightily to reject this negative energy, focus on the positive; all while the vision of him is in my head.
I pull into the driveway and the house is DARK.
I walk into the kitchen and the entire downstairs is exactly as I left it at 07:00. Seriously, you know that feeling and it's god damned creepy. I dropped my bags and ran up the stairs. He was lying on the bed, a god-awful noise coming from him almost like snoring but only if it were coming from a daemon in the depths of Hell. His eyes were partially opened, rolled back in their sockets. There was foamy drool coming out of his mouth. I fucking panicked. It was the god damned vision I had fought during my 45 minute commute.
I did everything I knew to rouse him and failed. All I had was a freakin glucose tab on the beside so I placed it under his tongue and tried to hold it in place while I took his blood sugar. It was 31.
I tried desperately not to panic and held onto the glucose tab under his tongue while I called 911.
Time stood still. I'm rubbing that glucose tab under his tongue and begging him to hold on for me, and where is the god-damned squad, and how long has he been like this if the house looks like I left it twelve hours ago, and please don't leave me, and where is the god-damned squad and flashbacks to our last tour through the ER, and should I just lock the doors and crawl into bed beside him till he's gone, and can I go too, and where is the squad, and holy shit I've been here before, but not like this, and Please, please, please don't leave me, Richard, I love you.
The squad arrives and I can barely talk. As it turns out, it didn't matter. Because anything I said, I had to say in triplicate. So that could ask me to repeat it..... in triplicate.
By the time the squad arrives, I'm explaining the scene for the third time.
“I got home from work and found him unresponsive, struggled breathing, foaming at the mouth and his blood sugar is 91.”
For the third time—Is he diabetic?
NO. Not diabetic, not on insulin, no new meds.... I repeat three times his meds. I had to spell “flecainide” three times. They want to know why I checked his glucose. Because he exhibited signs of hypoglycemia?!?!?!?!? So again they ask me how long he's been like this and what symptoms he's had over the past few days.
So okay, I'm going to spare all of YOU what I was not spared of. I calmly explained to them the medical records you can recall from this blog. I shared this info in triplicate. They repeated their questions in triplicate. I answered in triplicate.
As they are trying to start an IV, they are getting increasingly FREAKED by the fact that his pulse ox is 100%, his BP is 142/74, and his pulse is 76. He is still unresponsive and drooling foam.
If they were to ask me again if he had symptoms, a fever, or how long he had been like this, I would have grabbed the pen from his hand and shoved it into my jugular vein.
Luckilu the dextrose IV kicked in.
Within 4 minutes of the glucose drip, Rich started to respond. Ten Minutes later Rich is holding court and everyone is happy that they saved the day and Rich is making new best friends and I'm standing in the dark quarter of the room holding back sobs while one of the EMS berates me for attempting a glucose tab and one of the voices is screaming “Yeah—like possible choking was the priority here,you sorry ass fuck..”
And while the EMS squad is congratulating themselves and directing me towards producing a peanut butter sandwich post haste, I suddenly find myself in a close encounter with hell. I have been here before. I know this place. I know the frustration, hopelessness, and sheer pain of this place.
EMS demanded that we sign papers that “we” were refusing transport. I said. “Have him sign.” Rich was happy to do so, and made quite a grand show of it—per the EMS.
They left, and I could not stop crying. I kept hearing them ask the same questions and me giving the same answers, and them repeating the questions like my answers were unacceptable. I relived my recent days of nagging Rich to call the doctor because he wasn't feeling well and his blood sugars were running low, and feeling like shit because all I do anymore is nag. I felt flashbacks to the last time we called the squad that drove us to the ER where I signed papers, and then 27 days of sitting at his deathbed because he wouldn't call the doctor after I begged him to call the doctor.
So I looked at him tonight after the dust settled and he was all comfy and chatty and glad to be alive. And I asked him gently....”what the fuck do you want from me?” He had no idea what I was talking about. So I explained.
“I can't go to work anymore, because I need to be here to take care of you. That means we will lose our insurance, and then we will lose everything. Or I could hire a babysitter for you to make sure you do want needs done, in which case I'll be working to work; or I could just put you in a nursing home. What do I need to do???? What do you want? Because I'm at the end of my fucking rope.”
He just looked at me.
I don't know what I have to say or how I have to say it to make him hear me.
I sat on the edge of the bed beside him and cried. He stared at me while I cried. I begged him to tell me what he wants me to do. I screamed in the empty space between us ---I love you, I believe in you. PLEASE help me know what to do. He stared at me a moment, shrugged, and looked away. I told him I believe he will beat this. He nodded. I begged him to tell me my place in this. He shrugged and looked away.
So I came downstairs and sat on the couch and cried through two cups of tea and three handkerchiefs.
I'm just a bit tired now. A wee bit off my game. Not quite sure what my next step should be. Can't stop crying and feel like I have gallons to go....
I don't know, I got home from work and found him like this.
I worked late today, because my work has been piling up because Oct 1st Medicaid changed their formulary so they're rejecting 80% of the prescriptions the doctor writes and patients need their meds, and yada, yada, yada....
I have had my ass chewed by patients this week like you can not imagine because I'm not jumping through hoops fast enough or with the correct landing and it's just been unbelievable.
Three weeks ago I started my game plan to get Rich to call the doctor, any doctor, because he's not feeling well, and at the result of my gawd-damned bitching and demanding he takes his blood sugar and it is WAY too low. Repeatedly. For three weeks, results all over the place, So my campaign begins and carries on.
As per usual, I get ready to leave work at 18 :30 and call to let him know. No answer. Okay, so maybe he's in the potty, or maybe on his phone.
Fifteen minutes into my 45 minute commute I have a vision of how I will find him. Then I struggle mightily to reject this negative energy, focus on the positive; all while the vision of him is in my head.
I pull into the driveway and the house is DARK.
I walk into the kitchen and the entire downstairs is exactly as I left it at 07:00. Seriously, you know that feeling and it's god damned creepy. I dropped my bags and ran up the stairs. He was lying on the bed, a god-awful noise coming from him almost like snoring but only if it were coming from a daemon in the depths of Hell. His eyes were partially opened, rolled back in their sockets. There was foamy drool coming out of his mouth. I fucking panicked. It was the god damned vision I had fought during my 45 minute commute.
I did everything I knew to rouse him and failed. All I had was a freakin glucose tab on the beside so I placed it under his tongue and tried to hold it in place while I took his blood sugar. It was 31.
I tried desperately not to panic and held onto the glucose tab under his tongue while I called 911.
Time stood still. I'm rubbing that glucose tab under his tongue and begging him to hold on for me, and where is the god-damned squad, and how long has he been like this if the house looks like I left it twelve hours ago, and please don't leave me, and where is the god-damned squad and flashbacks to our last tour through the ER, and should I just lock the doors and crawl into bed beside him till he's gone, and can I go too, and where is the squad, and holy shit I've been here before, but not like this, and Please, please, please don't leave me, Richard, I love you.
The squad arrives and I can barely talk. As it turns out, it didn't matter. Because anything I said, I had to say in triplicate. So that could ask me to repeat it..... in triplicate.
By the time the squad arrives, I'm explaining the scene for the third time.
“I got home from work and found him unresponsive, struggled breathing, foaming at the mouth and his blood sugar is 91.”
For the third time—Is he diabetic?
NO. Not diabetic, not on insulin, no new meds.... I repeat three times his meds. I had to spell “flecainide” three times. They want to know why I checked his glucose. Because he exhibited signs of hypoglycemia?!?!?!?!? So again they ask me how long he's been like this and what symptoms he's had over the past few days.
So okay, I'm going to spare all of YOU what I was not spared of. I calmly explained to them the medical records you can recall from this blog. I shared this info in triplicate. They repeated their questions in triplicate. I answered in triplicate.
As they are trying to start an IV, they are getting increasingly FREAKED by the fact that his pulse ox is 100%, his BP is 142/74, and his pulse is 76. He is still unresponsive and drooling foam.
If they were to ask me again if he had symptoms, a fever, or how long he had been like this, I would have grabbed the pen from his hand and shoved it into my jugular vein.
Luckilu the dextrose IV kicked in.
Within 4 minutes of the glucose drip, Rich started to respond. Ten Minutes later Rich is holding court and everyone is happy that they saved the day and Rich is making new best friends and I'm standing in the dark quarter of the room holding back sobs while one of the EMS berates me for attempting a glucose tab and one of the voices is screaming “Yeah—like possible choking was the priority here,you sorry ass fuck..”
And while the EMS squad is congratulating themselves and directing me towards producing a peanut butter sandwich post haste, I suddenly find myself in a close encounter with hell. I have been here before. I know this place. I know the frustration, hopelessness, and sheer pain of this place.
EMS demanded that we sign papers that “we” were refusing transport. I said. “Have him sign.” Rich was happy to do so, and made quite a grand show of it—per the EMS.
They left, and I could not stop crying. I kept hearing them ask the same questions and me giving the same answers, and them repeating the questions like my answers were unacceptable. I relived my recent days of nagging Rich to call the doctor because he wasn't feeling well and his blood sugars were running low, and feeling like shit because all I do anymore is nag. I felt flashbacks to the last time we called the squad that drove us to the ER where I signed papers, and then 27 days of sitting at his deathbed because he wouldn't call the doctor after I begged him to call the doctor.
So I looked at him tonight after the dust settled and he was all comfy and chatty and glad to be alive. And I asked him gently....”what the fuck do you want from me?” He had no idea what I was talking about. So I explained.
“I can't go to work anymore, because I need to be here to take care of you. That means we will lose our insurance, and then we will lose everything. Or I could hire a babysitter for you to make sure you do want needs done, in which case I'll be working to work; or I could just put you in a nursing home. What do I need to do???? What do you want? Because I'm at the end of my fucking rope.”
He just looked at me.
I don't know what I have to say or how I have to say it to make him hear me.
I sat on the edge of the bed beside him and cried. He stared at me while I cried. I begged him to tell me what he wants me to do. I screamed in the empty space between us ---I love you, I believe in you. PLEASE help me know what to do. He stared at me a moment, shrugged, and looked away. I told him I believe he will beat this. He nodded. I begged him to tell me my place in this. He shrugged and looked away.
So I came downstairs and sat on the couch and cried through two cups of tea and three handkerchiefs.
I'm just a bit tired now. A wee bit off my game. Not quite sure what my next step should be. Can't stop crying and feel like I have gallons to go....
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