February 16, 12
At 08:10 this morning Rich called to let me know they want me there by 09:30 for discharge. I walked into his room at 09:15. It was empty. Except for the three food trays that were sitting on the floor. Yet again I went in search of my husband. Blah, blah, blah, encounters too trivial to relate… I’m wandering once again through the halls of Dr God, because I’ve been told he was taken back to radiology.
I see a familiar face who explains they’ve been paging me overhead.
“Well I’ve been in my car for the past forty minutes with my cell phone on….”
She’s ushering me to Rich and telling me “Dr __________ wants to talk to you..”
“Welll. I don’t want to talk to him.”
“No. He really needs to speak with you.”
“Well. I really don’t need to speak to him.”
Ant then we reach Rich, and she slips away saying, “Dr _________ will be right in to speak with you.”
Well. That’s just NOT going to be pretty.
I try to focus on Rich. Laying on a gurney in the exact spot he was in yesterday waiting to go for pellets. Here’s what he had to say:
“I had just hung up the phone with you, started to get dressed and suddenly people appear and announce I’m going back to radiology and another scan and then they drained another 800cc and oh yeah…. They’ll have to do the pellets again.”
I now believe that I am one of those rare few individuals who cannot faint. No matter how desperately the occasion may demand it. This was a a new awareness that I was pissed to receive.
While I may not faint, I must give off some kind of energy, chemicals or psychic resonance because suddenly I had RNs wheeling in a recliner and offering me coffee while I stand at his side, my knuckles white-gripping the rail and I can barely seethe a thank you, no thank you and some part of my brain registers that tears are flowing down my cheeks, Another brain cell registers how much it sucks to lack the necessary DNA to faint.
Some few minutes passed as I tried to process. Then, ta-da, announcing Dr ____________. I can recall that conversation word for word. He was standing to my right, Rich on my left. I focused on my grip on the siderail of the gurney and the shadows in a happenstance fold of sheet just above the insertion in Rich’s groin.
I will spare you the details, but I have Rich and two nurses present as my witnesses of the interaction.
Dr M. had been given to understand that I was upset. If one more person suggests that I’m upset, I may just jump ugly and show them how far beyond upset I truly am.
Then He tells me about the wonderful job they’ve done, and how much effort and blah, blah, blah, and Rich told me later that it was like watching a man slide down a muddy slope. I did not look at Dr M. I did not acknowledge his existence.
As his bravado slipped into explaining which moved towards groveling, I took pity. Without looking at him, I explained what all of you already know. In a calm, clear, steady voice, with tears rolling down my cheeks I highlighted the past week, summing it up with, “I understand you’re busy and important. I understand what it’s like to deal with all manner of patients and their families. I know that I have been three years in this fight, and I’ve been respectful, obedient and trusting, and I have earned the right to be completely, fully and respectfully informed.”
Rich talked about this encounter most of the way home. He could not fully comprehend what he had seen. He said he’s never seen a man that jarred.
Then I dismissed him with assurances that I was exceptionally grateful for his magnificent work and I would be sure not to trouble him in future.
He tried to regain some ground with discharge instructions. Pah-Lease. I assured him that if there were any problems I would be calling one of his doctors and rest assured, Dr M…. you will not be troubled.
As for the “next pellet placement”. I’ll address that later. Just one more incident of failure to disclose. Fucking sons of bitches.
I will now point out that there was an urgency to get things moving. Insurance requires he be discharged within 23 hours. He was admitted at 09:00 on Wednesday. It is now 11:00 am Thursday.
Discharge consisted of me getting him dressed and changing out his IV. Then we got up and walked out. Because if transportation had been called, discharge would have been time stamped. We were asked not to stop at the lobby desk, because that’s where they scan the patient ID wrist bands. And that is time stamped. And Dr M had impressed upon me in our little Come to Jesus Meeting that the hospital would take a huge hit if he was not discharged within 23 hours, and given all they had done for Rich…….
And Lord knows how deeply committed I am to whatever they need.
Just before discharge the endo doctor came to see us. She had been waiting for the nurse to call and let her know that we were ready to see her (!!!)
We talked. Like comrades who’ve survived another battle and marvel, yet plan for what may come. She asked Rich’s permission to write and deliver a paper on his case. Of course Rich agreed, just a little disappointed that she won’t be using his name. “Use my name!, Give them my phone number! If you can help someone else, I want to help too.”
When it was time to leave, she hugged first.
At the risk of lawsuits, I proudly state the following.
Rich has four doctors. Dr McGee, Dr Awender, Dr Ciltea and Dr Peiffer. (Jury not in on Dr Lowe). The rest of the bastards are just anatomical mechanics, and quite honestly, my car mechanic is far more impressive and I don’t have to protect myself from the glare of his ego.
Driving home Rich was so touched by Dr Ciltea’s wanting to write a paper on him. He talked about how much all of this might help someone else. Then he joked, “I’ll be famous, pupshn.”
I reminded him that she won’t be using any names.
He grinned. “Then I’ll just be famous in my own mind.”
Thursday, February 16, 2012
yttrium-90 microspheres
February 15, 2011
It’s pellet day! I just kissed him good-bye and watched them wheel him into The Room. It’s been a long four days since crying Saturday morning
The situation with the lung did not get any better. Don’t even pretend you’re surprised. When I got home from work Monday it was clear he was going downhill fast. I called the surgeon that the radiologist wanted us to call last week. He tried to explain that he can’t admit Rich because if he does, Rich won’t be able to get the pellets. It’s an insurance thing. That destroyed more brain cells than a fifth of Scotch. There was no getting around it, the ER was the only game in town. It only took me 35 minutes to talk Rich into going, and that alone was scary. Finally get him into the car and his struggle for air takes a decided turn for the worse before I can even pull out of the garage. I asked if he wanted me to call 911 and he nodded.
We have racked up some mileage in those EMS vehicles. Lights and sirens all the way. When ER staff finally allowed me into his cubicle he was being given a breathing treatment. Are you fucking kidding me. I just looked at the poor respiratory therapist and said, “wow, that’s how they drain lungs now?” Right over her pretty little head, landing in a dull thud on the shiny tile.
After spending five days without conversation Rich and I were no longer communicating on a verbal level. We sat in silence save for the sound of his labored breathing. Denny had met us at the ER. I suspect he was anticipating I might need a good attorney. And a bail bondsman.
I cannot tell one more ER story, so let’s just fast forward to the punch line.
Finally. THE ER Doctor enters our space. At this point I can only assume that everything about my countenance and bearing suggests mortal danger. I could sense his trepidation. He started explaining that the chest x-ray they took ten minutes ago shows his right lung is FULL. Just as he’s about to tell me the game plan, I interrupt and it went something like this….
“I knew there was fluid in is lung last week. When we called the doctor. The one who told us to call with any concerns. And we were told to call someone else. Who’s not available. And now we’re here because the lung that should have been drained five days ago is now full. Why? Because no one would listen. “
I stopped to breathe and the man unfortunately thought it was his turn to talk. He looked me square in the eye and with a syrupy voice said, “I understand you’re upset.”
“ I’m not upset. I don’t even remember what ‘UPSET’ feels like. What I am is—telling you to call McGee, or Peiffer or the surgeon or the endocrinologist or anyone who is going to address concerns going forward. Because if this man doesn’t get his pellets on Wednesday, there will be a reckoning.”
I spoke slowly and quietly just to assure him how completely not upset I was.
The doctor verbalized understanding.
Rich was admitted. Denny took me home. I got about three hours of sleep and went to work the next morning. Why? Because I desperately needed to kick ass and the only place I could do that in a positive way was at work. And a wise decision it was.
It wasn’t until 10:30 that I got a text message from Rich that they had JUST drained his lung. Three liters of fluid. And…wait for it….. the doctor who drained his lung was the doctor we called last week who directed us to take the problem elsewhere. Are you fucking kidding me. (a statement, not a question)
At 14:30 Rich called because they were discharging him and he needed a ride home and since I was an hour away he was going to phone a friend. Just wanted to let me know he wouldn’t be where I last left him.
Last night I got 2 hours of sleep before it was time to shower and get ready. What does one where to a radiation?
Neither one of us slept well. We’ve had plenty of time to talk about this. Maybe too much time. We talk about it the way a young couple talks about the fast approaching birth of their first child—hopeful, fully committed and scared to death.
We’re both bone weary. I don’t know how much more ass I can kiss and pretend to enjoy the taste. Rich is worn out from the cancer, the hypoglycemia , the fatigue, the struggle for air, the struggle for hope.
We are now dealing with doctors who don’t have six months invested in this fight trying to convince us that they have a clue as to what we’re going through. Blow smoke up someone else’s ass, thank you very much.
Yesterday they give Rich paperwork that said he can’t be within six feet of anyone for more than 10 minutes. Today they gave us paperwork that said a distance of three feet. So I asked which instructions were we supposed to follow. Apparently I didn’t ask with the right tone or big enough smile. Then they ask me if I have any questions. Um. Yeah. In the future whom do I call if we have a problem?
“We don’t anticipate any problems.” I swear to god that was the response.
Ninety minutes after leaving Rich’s side the new surgeon (who was there to observe this spanking new procedure) came out to check on me. (Why.) He wanted to know how I’m doing and being a humanitarian I warned him that I was not currently fit for human consumption. No, really, he wanted to hear my concerns. Turns out no he didn’t.
Just this once, could I please sit quietly in the waiting room while you work your magic? Could I please have this one time that I don’t have to shuck and jive and lick your hand, and shade my eyes from the glare of your radiance? How about you stop pretending that this is anything more than a job to you, and I’ll stop pretending I believe you. I think that’s equitable. It’s been three years and I’m tired of dancing for you.
The ninety minute procedure started at noon. At three PM the nurse came out to tell me that they had to re-map because new vessels had grown. This is why, they explained on Dec 29th,, that the procedure MUST be done within two weeks of mapping. We’re now at three weeks.
At five PM Doctor God came out to tell me he was done and what a damn fine job he had done. He got those pesky new vessels and inserted the pellets and everything is done. I fear I may not have displayed an adequate amount of adoration. At six pm I’m still waiting for someone to let me know….anything. I check with the radiology information desk. I give his name and they ask what procedure he’s had done and when I tell her, she says “we don’t do that here.”
Well. Yeah. Yeah you do. I can show you the room in which it was done. Never mind, I’m just looking for my husband. I had a bit of gratitude left in me so I gushed it in her general direction and then I drifted off and wandered the halls. Looking for my husband.
I ran into Dr. God in the hallway. “Yeah, he’s back in the room waiting for a scan. You can go back if you want.”
Thank you, massah, thank you so much.
We spent 45 minutes in a room getting a scan that was delayed because the equipment was being cranky. Then we went up to his room. Alert, alert. The man is radioactive. Maintain a three or six foot distance, with no direct contact beyond three/five/ten minutes. I found his dinner tray, then found a microwave and since he can’t raise his head, I had to feed him. I stood bedside for 27 minutes feeding him. Given the anatomical positioning of our bodies, I may now be sterile.
Then I drove home.
It’s pellet day! I just kissed him good-bye and watched them wheel him into The Room. It’s been a long four days since crying Saturday morning
The situation with the lung did not get any better. Don’t even pretend you’re surprised. When I got home from work Monday it was clear he was going downhill fast. I called the surgeon that the radiologist wanted us to call last week. He tried to explain that he can’t admit Rich because if he does, Rich won’t be able to get the pellets. It’s an insurance thing. That destroyed more brain cells than a fifth of Scotch. There was no getting around it, the ER was the only game in town. It only took me 35 minutes to talk Rich into going, and that alone was scary. Finally get him into the car and his struggle for air takes a decided turn for the worse before I can even pull out of the garage. I asked if he wanted me to call 911 and he nodded.
We have racked up some mileage in those EMS vehicles. Lights and sirens all the way. When ER staff finally allowed me into his cubicle he was being given a breathing treatment. Are you fucking kidding me. I just looked at the poor respiratory therapist and said, “wow, that’s how they drain lungs now?” Right over her pretty little head, landing in a dull thud on the shiny tile.
After spending five days without conversation Rich and I were no longer communicating on a verbal level. We sat in silence save for the sound of his labored breathing. Denny had met us at the ER. I suspect he was anticipating I might need a good attorney. And a bail bondsman.
I cannot tell one more ER story, so let’s just fast forward to the punch line.
Finally. THE ER Doctor enters our space. At this point I can only assume that everything about my countenance and bearing suggests mortal danger. I could sense his trepidation. He started explaining that the chest x-ray they took ten minutes ago shows his right lung is FULL. Just as he’s about to tell me the game plan, I interrupt and it went something like this….
“I knew there was fluid in is lung last week. When we called the doctor. The one who told us to call with any concerns. And we were told to call someone else. Who’s not available. And now we’re here because the lung that should have been drained five days ago is now full. Why? Because no one would listen. “
I stopped to breathe and the man unfortunately thought it was his turn to talk. He looked me square in the eye and with a syrupy voice said, “I understand you’re upset.”
“ I’m not upset. I don’t even remember what ‘UPSET’ feels like. What I am is—telling you to call McGee, or Peiffer or the surgeon or the endocrinologist or anyone who is going to address concerns going forward. Because if this man doesn’t get his pellets on Wednesday, there will be a reckoning.”
I spoke slowly and quietly just to assure him how completely not upset I was.
The doctor verbalized understanding.
Rich was admitted. Denny took me home. I got about three hours of sleep and went to work the next morning. Why? Because I desperately needed to kick ass and the only place I could do that in a positive way was at work. And a wise decision it was.
It wasn’t until 10:30 that I got a text message from Rich that they had JUST drained his lung. Three liters of fluid. And…wait for it….. the doctor who drained his lung was the doctor we called last week who directed us to take the problem elsewhere. Are you fucking kidding me. (a statement, not a question)
At 14:30 Rich called because they were discharging him and he needed a ride home and since I was an hour away he was going to phone a friend. Just wanted to let me know he wouldn’t be where I last left him.
Last night I got 2 hours of sleep before it was time to shower and get ready. What does one where to a radiation?
Neither one of us slept well. We’ve had plenty of time to talk about this. Maybe too much time. We talk about it the way a young couple talks about the fast approaching birth of their first child—hopeful, fully committed and scared to death.
We’re both bone weary. I don’t know how much more ass I can kiss and pretend to enjoy the taste. Rich is worn out from the cancer, the hypoglycemia , the fatigue, the struggle for air, the struggle for hope.
We are now dealing with doctors who don’t have six months invested in this fight trying to convince us that they have a clue as to what we’re going through. Blow smoke up someone else’s ass, thank you very much.
Yesterday they give Rich paperwork that said he can’t be within six feet of anyone for more than 10 minutes. Today they gave us paperwork that said a distance of three feet. So I asked which instructions were we supposed to follow. Apparently I didn’t ask with the right tone or big enough smile. Then they ask me if I have any questions. Um. Yeah. In the future whom do I call if we have a problem?
“We don’t anticipate any problems.” I swear to god that was the response.
Ninety minutes after leaving Rich’s side the new surgeon (who was there to observe this spanking new procedure) came out to check on me. (Why.) He wanted to know how I’m doing and being a humanitarian I warned him that I was not currently fit for human consumption. No, really, he wanted to hear my concerns. Turns out no he didn’t.
Just this once, could I please sit quietly in the waiting room while you work your magic? Could I please have this one time that I don’t have to shuck and jive and lick your hand, and shade my eyes from the glare of your radiance? How about you stop pretending that this is anything more than a job to you, and I’ll stop pretending I believe you. I think that’s equitable. It’s been three years and I’m tired of dancing for you.
The ninety minute procedure started at noon. At three PM the nurse came out to tell me that they had to re-map because new vessels had grown. This is why, they explained on Dec 29th,, that the procedure MUST be done within two weeks of mapping. We’re now at three weeks.
At five PM Doctor God came out to tell me he was done and what a damn fine job he had done. He got those pesky new vessels and inserted the pellets and everything is done. I fear I may not have displayed an adequate amount of adoration. At six pm I’m still waiting for someone to let me know….anything. I check with the radiology information desk. I give his name and they ask what procedure he’s had done and when I tell her, she says “we don’t do that here.”
Well. Yeah. Yeah you do. I can show you the room in which it was done. Never mind, I’m just looking for my husband. I had a bit of gratitude left in me so I gushed it in her general direction and then I drifted off and wandered the halls. Looking for my husband.
I ran into Dr. God in the hallway. “Yeah, he’s back in the room waiting for a scan. You can go back if you want.”
Thank you, massah, thank you so much.
We spent 45 minutes in a room getting a scan that was delayed because the equipment was being cranky. Then we went up to his room. Alert, alert. The man is radioactive. Maintain a three or six foot distance, with no direct contact beyond three/five/ten minutes. I found his dinner tray, then found a microwave and since he can’t raise his head, I had to feed him. I stood bedside for 27 minutes feeding him. Given the anatomical positioning of our bodies, I may now be sterile.
Then I drove home.
Subscribe to:
Posts (Atom)