Friday, September 24, 2010.
Rich was discharged today, in the record time of four-1/2 hours from the time I got the phone call till I was sitting at the entrance waiting for him.
I had some concerns...
Yesterday he was throwing up, battling nausea, and for the past two days he coughs and hacks repeatedly to bring up an endless supply of thick, globby paste of phlegm. He then collapses in exhaustion and the pain it causes his abdominal incision. More than once the nursing staff checked the staples to make sure they were still intact.
When he's not actively coughing up a ball of silly putty, he's constantly attempting to clear his throat in hopes of rearranging the clinging glob off the gag reflex nerve. Either way, the strain to his abdominal muscles leaves him weak, trembling and in need of pain meds.
Between the coughing, nausea and pain meds, and the food he is served, his appetite is facockta. He's incredibly weak. On more than one occasion he hasn't been able to make it to the bathroom in time. Take just a moment to consider what impact that would have on one's mental/emotional health.
But the important thing is that the doctors are pleased with the results of their latest efforts. I'm trying to be pleased too, but I'm not privy to happy-snappy lab results, or how the patient looks when his chart is reviewed. I'm sitting beside Rich's bed. Listening to him cough and hack and desperately attempt to clear his airway, while he holds his side and moans in pain from the effort. When he's not suffering, he's floating somewhere on the edge of pharmaceutical euphoria. Either way, he has nothing to say to me. An entire week in the hospital and 99% of his verbal skills have been shared with everyone but me. Ever polite, charming, please and thank yous, and he turns to me for requests. He complains to me about the food (rightfully so) then tells staff it was just fine. I beg him to eat, he whines, complains and refuses. Hospital staff comes in and he suddenly makes an effort, and assures them he will try harder. Nursing assistant enters the room to see if he needs anything and he says “no”. They leave the room and he needs me to move this, retrieve that, reposition this, untwist the covers, and where is his urinal, his water and his tissues?
On a deep level I feel and acknowledge that his comfort level is so high with me that I'm the one he turns to and leans on. I am the only one that he allows to see his weak, vulnerable side. It makes me feel special. Like I would specially like to smack him up the backside of his head.
By today there were no longer requests—just grunts and hand gestures. Just as well since his words are so slurred I can't understand half of what he says anyway.
For three hours we got the puzzle pieces of discharge. Translated, that means that every 30-45 minutes a member of hospital staff comes in the room and mentions that they hear you're being discharged today, and you put a hawkeye on their behavior to see if their actions mirror the promise. The surgeon agrees with me that we will not remove the PIC line today on the off chance that something develops (ya think?!?!) that might require fast IV access. Three times hospital staff comes in for the next step of discharge which is ---REMOVING the PIC line. After the third correction, I am now afraid to use the rest room lest I return to find the PIC line has been removed. On the flip side, the surgical drain that I was told would be removed before discharge is not going to be removed.
The Infectious Disease doctor says the PIC line can go, I explain why that is not going to happen and he's totally agreeable and the cycle begins again.
Suddenly the paperwork is complete and it is now the bum's rush to remove the patient. Without any assistance. This man has lost 45 lbs in the past 5 months. He was admitted to the hospital with his clothes HANGING on his bony frame. I'm trying to help him dress. He barely has the energy to lift a foot just enough to clear the floor and drop into a pants leg. By the time we get his oversized pants up to his waist I AM out of breath. Then we discover that his abdomen is so swollen that we can't button and zip the jeans that required a cinched belt to keep them up a week ago.
Now I've got to get his sausage feet into his footies and then into shoes. I'm close to tears. Between weakness and edema he can't hold his feet up long enough for me to slide his ankle socks on. Maybe it would work better if I laid him back in the bed and did it that way, but at this point I fear that if he lays down again, I'll never get him up.
Geezus Haych Kryste, now I have to get his shoes on. Shoot me. I had to loosen the shoe strings to the max to pull the tongue back far enough for a screaming opening that would accommodate his sausage dogs. Still it was a struggle that left me sitting on the floor by his bed crying with the assurance that Rich was oblivious to my pain, suffering and requests for assistance.
Yee-hah, he's ready to load. I pack up all the comforts I brought him that were well intended and totally ignored. His 8 lb terry bath robe, two large canvas bags of food on ice, lotion, hygiene items, photos, an herbal rice pillow for warmth and an expensive neck pillow.... cheery=cheery, rah-rah, crap that weighs a ton combined when schlepping flights of stairs and parking decks.
He does not speak to me on the 40 minute ride home save to say.... “What did I do wrong?” Apparently he noticed my frustration with the people who were loading him into the van for not listening to me when I asked them to hand me his walker.
Holy crap, Batman..... My comfort Vat is empty. For the first 10 minutes I try not to cry, but then I hear by his breathing that I could sing Madame Butterfly without response, so I just relax into the long drive and the orange barrels and let the tears fall.
I get him home. Let me tell you about getting him up the stairs. I park so that he can step from the van with his walker straight up to the stoop, and I know how to assist someone with a walker up steps. We make the landing and he is panting and exhausted. I have him sit on the bottom step. I sit on the floor beside him. I tell him how much the house has missed him and how the energy is trying to embrace him. When his breathing is even I have him brace his hands on the step behind him... “push with your legs sweetie and plop your bum up on the next step right between your hands.” We do this, rest and do this again, until he is two steps from the top. I get him to pivot, tell him how to move, which muscle to use and I stand locked rock solid between him and the fall.
I get him into bed which is no less effort than getting him dressed for discharge. I go to the pharmacy to fill the fistful of Rx. It will take an hour. I sit in my van in the parking lot and text message everyone I can think of that Rich is Home. Otherwise, people will show up to visit him in the hospital and later read me the riot act for not keeping them informed. Within twenty minutes I've got 9 text messages in response and I do not have the words to express how pleased I am that everyone is so pleased. I'd like to celebrate by sticking a fork in my jugular.
$168.53 for the Rx and those Rx not covered by insurance and the order that lacked an Rx so it was out of pocket.....
I get home and begin to beg him to eat. I'm foolish enough to think I can tempt and lure him into something that might appeal to him. Well, I'm an idiot. He's Catholic German so all I need to do is drop some slop in front of him and guilt him into consumption.
That's right, boys and girls. Once again...ever and always... I am the bad guy. And the flaming shit of it is that I feel guilty because I cannot get through to him. I look at this poor man suffering, and I'm upset because I'm not successful in his struggle?!?!?! Whoa.... returning attack of Snail Slime.
I am simply a selfish bitch. I want desperately to wrap myself around him, look into his eyes and reconnect with the electrical circuit that has fueled our home, our garden, our journey, our lives. I want to see a spark of recognition in his eyes for me. I want him back.
Instead, the fear of pain and disappointment holds me reserved so that I become servant to his needs to keep me close to him while carefully insulated from my emotions.
Maybe not enough.
I hurt, I hurt, I hurt. And how selfish am I that I hurt so bad I can barely comprehend how HE hurts?
Friday, September 24, 2010
Wednesday, September 22, 2010
Princess Crabby Pants
Richard's post-op euphoria has worn off. Monday morning he called to tell me he felt great. The way he was slurring his words, I think I know why. He asked me to “take the day off”--stay home and rest. He said he'd call me later in the day. I don't think he remembered that part.
I stayed home, but not to rest. Are you kidding me?! This house looks like a tornado blew through. I had just enough energy to put a dent in it and I baked for him some “breast feeding cookies”. They are so called because of the ingredients that promote milk production. They are YUMMY, and thank heavens I'm not lactating.
I went in to see him Tuesday afternoon and I completely missed his Happy Window. He was completely post-op miserable. I felt what little energy I had being sucked out of me. I crawled into bed beside him and we took a nap. Awake again he was in pain, trying to get up to the chair but abdominal surgery makes everything difficult and painful. We triumphed with effort and he slept in the chair for a bit, then we took a very short walk a few feet down the hall. He is so tired of being in pain. He still has no appetite. When his dinner came, I could understand why. The meat was dry, the gravy tasted more of salt than anything else, the steamed vegetables tasted like formed paste. He had told me not to bring the mac and cheese I had made. Now he was regretting that. He had some kind of nutritional supplement that tasted like orange syrup. I could not have eaten that crap. Even the water was awful. It wreaked of chlorine, which you will notice when you drink nothing but filtered water at home. Thankfully I remembered to bring the Britta water pitcher. I offered to go to the cafeteria and find him some yogurt and he agreed. I noticed that nothing on his tray was being offered in the cafeteria where people actually pay for their food, as opposed to a portion of the overall room cost. Hhmmmm.
A scoop of mashed potatoes, two little Activia yogurts and a pint of whole milk--$4.07 Watching Rich eat something....priceless.
At this rate I'll go broke. Three dollars a day to park (and that's with my $2 off card, and we now have to pay to park for his doctor's appointments), almost the same amount in gas for the round trip, and now I have to buy his meals? There should be nothing on a patient's tray that is not being served in the doctors' dining room. If they had to eat that crap there'd be a major shake-down.
Silly me. How could I have forgotten in such a short time that I'm supposed to be bringing food in for him, and while the McDonalds the Dietician recommended would be way more convenient, that's just not going to happen for a plethora of reasons. So I'm still cooking, which also requires cleaning up the kitchen three times a day. The only difference is that instead of setting a lovely tray and carrying it up the stairs, I'm packing it up in ice and schlepping it to the very last room on the fifth floor. It's like going camping every god damn day only you never actually get there so you drive back home and the next day you do it again.
Today I get here ten minutes before his lunch tray. Today is the day he eats 100% of his meal. Thankfully the food I brought is packed in ice so it will keep until dinner time, or till I get it back in the fridge at home so I can schlepp it back tomorrow. I go for coffee only to discover that the coffee machines in both the oncology family room AND the MICU waiting room are out of service. Now I just want to cry. I try to knit, but my Cranky Mood takes all the peace and joy out of knitting for me. I watch him read the newspaper I brought him. After my third failed attempt at conversation I give up from exhaustion. Ten minutes later he's sleeping. I don't blame him. I can't make small talk when I'm at my best; I don't feel like talking at all when I'm sick. But the silence enables me to hear the little voice in my head telling me how grateful I should be that he's doing better. I think I'll suspend gratitude until I'm doing better.
So pardon my case of Crabby Pants. For the past few days I'm listening to everyone sing happy because Rich is doing so much better and I “must be so relieved”. If I hear one more person tell me how grateful I must be that I can now get some rest I'm going to totally jump ugly on them. That's like everyone doing the Happy Dance because the baby is finally here, as the mother is trying to recuperate while waking up every two hours to feed her. Shut up.
But the phone call that absolutely threatens to push me over the edge is... “we just had to call to find out how Rich is doing because we've been praying for him...” I SO don't know what THAT means.
Seriously? If something is important enough that I'm going to appeal to my higher power, I don't think I'm going to be rude and call around afterward to check up on His/Her performance. Way to bring your Faith.
Normally I can suck it up in an hour or two, but now my attempts at rebound are at a dead stop. I fear it will stay that way until Hope stops feeling like a delusion. That and I would appreciate an answering machine with an automatic kill switch for Stupid. Temporary deafness would be bliss. Doubt I can book three days in a sensory deprivation tank... Since ear drums do not regenerate, I'm trying to resist the urge to sharpen pencils and stick them in my ears.
I absolutely despise how ungrateful, ugly and bitchy I sound. Even as I write this I question whether I have the guts to actually post this blog and reveal my evil side. It would be so easy not to....only post the hope, love and devotion. But that's only a part of it and without the whole picture this is just a lame movie on the Lifetime Channel. As bad as my candor makes me look, it would be more evil to let other people in similar situations think it's possible to walk this path in a constant state of Perfect Polyanna. You can't live something this ugly day after day without having UGLY rub off on you. Two days after a new workout routine, your muscles really feel it; two days after surgery your incision hurts the worst; and three days after the crisis passes, I get a case of Crabby Pants. That's how that works.
A couple of years ago Rich bought me a t-shirt with a crown on the front that says “Princess Crabby Pants.” His way of letting me know that he understands and supports the occasional funk. He could usually tell a spell was coming before I did. It didn't take him long to learn that the duration was heavily impacted by how he responded to it. He became the King of Princess Crabby Pants. It takes a humongous load of crap before I feel the weight of the Crabby Pants Crown. Still, he could have me turned around in no time. Now he's in too much pain, or too tired to notice and if he did he'd only feel guilty that he was the cause. It makes me keenly aware of how alone I am without my best friend to tease and comfort me.
One of the many evil aspects of Cancer is that it divides and conquers. First, It turns your mate into a Patient, and gradually it turns the patient into a Stranger. The battle to keep the lines of communication open is monumental. Then there's the battle against surrendering to pity for your mate's suffering; guilt for your exhaustion and lack of patience; the confusion of when to be tough and when to be gentle.
So pardon me if I'm not dancing on clouds because an excellent surgeon cleaned up another doctor's mess. Don't think I'm not grateful. In my solitude I did cry with gratitude, and I did sing. But it was one battle in a very long war, and the very next morning I had to pick up my bundle and move on down the road to the next battlefield. Between surgical pain, lack of appetite and low blood counts, he is barely capable of responding to a three second warning of bladder and bowel. Not conducive to celebrating when the emotional impact is far more damaging than the physical and I'm the one dealing with both.
And while I'm dealing with his care and comfort, I have to juggle the care and comfort of everyone who feels they have the right to be kept informed because their lack of faith requires that I update them on the progress of their prayers and the power of their god.
Breathing down my neck is the corporate policy demand to keep my employer informed when the situation changes daily and I can sit on hold for 40 minutes and still not get through to whoever may, or may not, be my supervisor. I could fully explain, but it would seriously compromise my employment.
I'm just doing the best I can, tired of being critiqued and directed in the process by well-intentioned people without a fucking clue. I AM..... Princess Crabby Pants.
I stayed home, but not to rest. Are you kidding me?! This house looks like a tornado blew through. I had just enough energy to put a dent in it and I baked for him some “breast feeding cookies”. They are so called because of the ingredients that promote milk production. They are YUMMY, and thank heavens I'm not lactating.
I went in to see him Tuesday afternoon and I completely missed his Happy Window. He was completely post-op miserable. I felt what little energy I had being sucked out of me. I crawled into bed beside him and we took a nap. Awake again he was in pain, trying to get up to the chair but abdominal surgery makes everything difficult and painful. We triumphed with effort and he slept in the chair for a bit, then we took a very short walk a few feet down the hall. He is so tired of being in pain. He still has no appetite. When his dinner came, I could understand why. The meat was dry, the gravy tasted more of salt than anything else, the steamed vegetables tasted like formed paste. He had told me not to bring the mac and cheese I had made. Now he was regretting that. He had some kind of nutritional supplement that tasted like orange syrup. I could not have eaten that crap. Even the water was awful. It wreaked of chlorine, which you will notice when you drink nothing but filtered water at home. Thankfully I remembered to bring the Britta water pitcher. I offered to go to the cafeteria and find him some yogurt and he agreed. I noticed that nothing on his tray was being offered in the cafeteria where people actually pay for their food, as opposed to a portion of the overall room cost. Hhmmmm.
A scoop of mashed potatoes, two little Activia yogurts and a pint of whole milk--$4.07 Watching Rich eat something....priceless.
At this rate I'll go broke. Three dollars a day to park (and that's with my $2 off card, and we now have to pay to park for his doctor's appointments), almost the same amount in gas for the round trip, and now I have to buy his meals? There should be nothing on a patient's tray that is not being served in the doctors' dining room. If they had to eat that crap there'd be a major shake-down.
Silly me. How could I have forgotten in such a short time that I'm supposed to be bringing food in for him, and while the McDonalds the Dietician recommended would be way more convenient, that's just not going to happen for a plethora of reasons. So I'm still cooking, which also requires cleaning up the kitchen three times a day. The only difference is that instead of setting a lovely tray and carrying it up the stairs, I'm packing it up in ice and schlepping it to the very last room on the fifth floor. It's like going camping every god damn day only you never actually get there so you drive back home and the next day you do it again.
Today I get here ten minutes before his lunch tray. Today is the day he eats 100% of his meal. Thankfully the food I brought is packed in ice so it will keep until dinner time, or till I get it back in the fridge at home so I can schlepp it back tomorrow. I go for coffee only to discover that the coffee machines in both the oncology family room AND the MICU waiting room are out of service. Now I just want to cry. I try to knit, but my Cranky Mood takes all the peace and joy out of knitting for me. I watch him read the newspaper I brought him. After my third failed attempt at conversation I give up from exhaustion. Ten minutes later he's sleeping. I don't blame him. I can't make small talk when I'm at my best; I don't feel like talking at all when I'm sick. But the silence enables me to hear the little voice in my head telling me how grateful I should be that he's doing better. I think I'll suspend gratitude until I'm doing better.
So pardon my case of Crabby Pants. For the past few days I'm listening to everyone sing happy because Rich is doing so much better and I “must be so relieved”. If I hear one more person tell me how grateful I must be that I can now get some rest I'm going to totally jump ugly on them. That's like everyone doing the Happy Dance because the baby is finally here, as the mother is trying to recuperate while waking up every two hours to feed her. Shut up.
But the phone call that absolutely threatens to push me over the edge is... “we just had to call to find out how Rich is doing because we've been praying for him...” I SO don't know what THAT means.
Seriously? If something is important enough that I'm going to appeal to my higher power, I don't think I'm going to be rude and call around afterward to check up on His/Her performance. Way to bring your Faith.
Normally I can suck it up in an hour or two, but now my attempts at rebound are at a dead stop. I fear it will stay that way until Hope stops feeling like a delusion. That and I would appreciate an answering machine with an automatic kill switch for Stupid. Temporary deafness would be bliss. Doubt I can book three days in a sensory deprivation tank... Since ear drums do not regenerate, I'm trying to resist the urge to sharpen pencils and stick them in my ears.
I absolutely despise how ungrateful, ugly and bitchy I sound. Even as I write this I question whether I have the guts to actually post this blog and reveal my evil side. It would be so easy not to....only post the hope, love and devotion. But that's only a part of it and without the whole picture this is just a lame movie on the Lifetime Channel. As bad as my candor makes me look, it would be more evil to let other people in similar situations think it's possible to walk this path in a constant state of Perfect Polyanna. You can't live something this ugly day after day without having UGLY rub off on you. Two days after a new workout routine, your muscles really feel it; two days after surgery your incision hurts the worst; and three days after the crisis passes, I get a case of Crabby Pants. That's how that works.
A couple of years ago Rich bought me a t-shirt with a crown on the front that says “Princess Crabby Pants.” His way of letting me know that he understands and supports the occasional funk. He could usually tell a spell was coming before I did. It didn't take him long to learn that the duration was heavily impacted by how he responded to it. He became the King of Princess Crabby Pants. It takes a humongous load of crap before I feel the weight of the Crabby Pants Crown. Still, he could have me turned around in no time. Now he's in too much pain, or too tired to notice and if he did he'd only feel guilty that he was the cause. It makes me keenly aware of how alone I am without my best friend to tease and comfort me.
One of the many evil aspects of Cancer is that it divides and conquers. First, It turns your mate into a Patient, and gradually it turns the patient into a Stranger. The battle to keep the lines of communication open is monumental. Then there's the battle against surrendering to pity for your mate's suffering; guilt for your exhaustion and lack of patience; the confusion of when to be tough and when to be gentle.
So pardon me if I'm not dancing on clouds because an excellent surgeon cleaned up another doctor's mess. Don't think I'm not grateful. In my solitude I did cry with gratitude, and I did sing. But it was one battle in a very long war, and the very next morning I had to pick up my bundle and move on down the road to the next battlefield. Between surgical pain, lack of appetite and low blood counts, he is barely capable of responding to a three second warning of bladder and bowel. Not conducive to celebrating when the emotional impact is far more damaging than the physical and I'm the one dealing with both.
And while I'm dealing with his care and comfort, I have to juggle the care and comfort of everyone who feels they have the right to be kept informed because their lack of faith requires that I update them on the progress of their prayers and the power of their god.
Breathing down my neck is the corporate policy demand to keep my employer informed when the situation changes daily and I can sit on hold for 40 minutes and still not get through to whoever may, or may not, be my supervisor. I could fully explain, but it would seriously compromise my employment.
I'm just doing the best I can, tired of being critiqued and directed in the process by well-intentioned people without a fucking clue. I AM..... Princess Crabby Pants.
Sunday, September 19, 2010
Another cut
Saturday was hard for me. I wanted to go the hospital to be with him. Given the past two weeks, that desire was clearly masochistic. I was shamefully grateful that I had to stay home because my brother was coming to address the leaking ceiling. I kept reminding myself that Rich was securely tucked into the oncology floor that is staffed by angels.
So my brother came and rescued me yet again. By three in the afternoon he had assessed the situation despite the fact that I had the wrong type of ladder; he went for supplies, came back and repaired the leaking skylights, (AND washed them), gave me brotherly comfort and distraction. By four pm I had a shower and my fresh baked macaroni and cheese (one of Rich's favorites), a bag of the things he wanted me to bring plus his rice pillow and his robe and I drove in to see him.
All the way there I struggled with how badly I did not want to go. I wanted to stay home, light incense, sink into a hot bath, crawl into bed and not resurface for a week. And I wanted to not feel guilty for it. The drive was bad enough, but the walk from the parking garage to his room at the ass end of the fifth floor was like trudging through a mile of quick sand in flip-flops. Once I reached his bedside I managed to suck it up. I crawled into bed beside him and we were both amazed at how naturally something clicked.
Since the beginning of US Rich and I have slept like spoons in an antique double bed with room left over. Since he was discharged Aug 11th, I switched sides of the bed so that he would be closer to the bathroom and there would be room for the bedside commode to be right next to him. This meant that I had to sleep on his right side—his PIC line in his right arm and the drain from his liver. Now in his hospital bed I was correctly on his left side again and we both relaxed, and we even discussed how crazy it was that we never noticed before how wrong the adjustment had been.
There was an “NCIS” marathon so we snuggled in like almost normal to watch our favorite show. His wonderful nurse came in and all three of us carried on as if it were the most natural thing in the world for her patient to be cuddled in the hospital bed with his wife on one side and the beeping IV on the other side. She was in pretty frequently to check his temperature because they were waiting for it to reach normal so they could start another blood transfusion. They were getting a bit anxious about it because the order came at 9 am. It took eight hours to cross match his antibodies and just about the time they got that accomplished, Rich started spiking his daily fever. We watched four episodes of “NCIS” like floating in a blessed bubble of normal. By nine pm I knew I had to leave or figure out how to spend the night. I managed to tear myself away and Rich would call as soon as he knew if they would do surgery. He was so miserable I think he was relieved to see me go. There are times when you are so miserable that Jesus Christ would feel like an intrusion.
Either I failed to set my alarm or I slept through it. At 8:30 this morning I was nuking a cup of yesterday's coffee and trying to wake up. At 8:45 Rich calls to tell me they're taking him for surgery at 9 am. Seriously? The one freakin' morning that I manage to sleep past 5:30 and I've got 15 minutes to get my ass on the road for a forty minute trip? This is the same flippin' place that tells us at 7 am he's being discharged and I'm loading him in the car at 7 pm. Really? TODAY is the day that two months of shit has to be resolved at the snap of somebody's fingers? Well, okay then. I wave my magic pom-poms over the phone and assure him that everything will be fine. I tell him I love and there's silence. .. then I hear him crying.
Oh my god do you people realize how much I could hate you for denying me the chance to hold and comfort him before you cut into him again? Seriously. On SUNDAY morning your surgery schedule is so fucking tight that I get fifteen minutes notice for a non-emergent surgery? I am trying so hard not to hate you.
My guts are grinding with the effort of comforting him over the phone. He is simply worn out. He's not afraid. He tells me “I love you, pupshun, but I'm just tired of this and I just can't hurt anymore...please....”
Honestly? I don't remember how I responded, but I think it was pretty good because I do remember that he was not crying when I hung up the phone and dove into my car to get to him.
And I gotta tell ya'--that is one incredibly surreal commute. Twenty minutes from a dead sleep, with half a cup of coffee, on a Sunday morning, forty minutes heading to a surgical waiting room to sit and wait for someone to walk towards me in slow motion to tell me if my heart will or will not shatter into a thousand pieces. Who needs a Red Bull?!?!
You know I'm wanting to pull out my knitting and dig in, but Rich's brother and sister-in-law are already there because they live closer and while I love them dearly, I just want to be alone. In minutes I'm drawn into their attempts to comfort my wait. And gradually we ease into a comfortable silence, and they pull out their bibles and prayer books and I embrace my yarn and needles and the steady rhythm of knit, purl, cable.
There is a big screen TV that is filled with a graph like an Excel spreadsheet on steroids. It is the entire OR at a glance. It is color coded for the status of each operating room. On the entire grid there is only one block active. OR-6. Right now it is chartreuse, which means the surgery is in process. From fifteen feet away I can watch the chartreuse block move with the time passing. Suddenly I look up from my stitches and see the block has changed to deep purple so I check that out. Purple means recovery. It is 11 am and a few minutes later I see Dr A coming our way.
First thing out of his mouth is an apology for how little notice I received of surgery, and he tells me that he knew only five minutes before I did. (Knowing Dr A as I do, if he told me the sky were now green I would believe him.) It takes me a few seconds to realize that he's trying not to smile. (You'd have to know him) He tells us that surgery went better than he hoped. To sum it up for you, he removed approximately 1-1/2 cups of necrotic tissue and puss from the liver. The drain we have been living with for the past five weeks was like trying to suck mashed potatoes through a swizzle stick. The IV antibiotics were barely keeping pace with the infection. He checked out all of the surrounding area and nothing was leaking into the liver, he did not have to resection any bowel, bile ducts were in place and he is confident that everything was a result of dead tumors rotting in his liver with nowhere to go. He replaced the old drain with a new one at the surgical site and assured me it was strictly a surgical drain that would probably come out in a week or two, and he would probably go home Thursday or Friday. What do you say to the man who unlocks your prison cell and leads you into the sunlight?
At 11:15 Dr A wraps it up for us, tells us that someone will call us when Rich is moved from recovery to his room. Two and a half hours later we're growing a bit concerned that Rich is still in recovery. The phone has rang but not for us. So I know the phone is working. Then, I remember where I am and roll my eyes at how silly I am for forgetting where I am. I tell his brother, “Ed, go to the phone, call the front desk and ask what room Rich _____ is in.” He looks at me funny like a reasonable person would. I say, “trust me, just call like you're sitting on your couch and want to send flowers.” Sure enough. Rich is back in his room.
We walk into his room and Rich says, “jesus, where have you guys been?!?! Buddy and Michael have been here and I thought maybe you'd left.” No, dear. We were sitting in the surgical waiting room waiting for the phone call as directed. Rich had been in his room for 1-1/2 hours. I am trying so hard not to be angry.
The three of us are frozen at his bedside. We're trying to comprehend what we're seeing. His color is good, his eyes are bright, he's fully engaged. He's yacking like a magpie. Every other sentence out of his mouth is--”I can't believe how good I feel!” His brother is in shock and he last saw him ten days ago before it really got bad. I'm in shock. He's talking in complete sentences, and actually seems to care that I am present. He's holding my hand (not the other way round) and his skin feels warm rather than hot, and it's not clammy. I need someone to pinch me but I'm afraid to wake up from this dream. When it's just the two of us Rich tells me, “I woke up in recovery and my first thought was....I must be dead because I feel so good.”
A few minutes later his body is responding to the trauma of surgery and he's ready for some pain meds. The nurse pushes dilaudid and that's my cue to head home because I don't need to listen to two hours of Rich singing Christmas carols.
I leave the hospital knowing they may not have to puncture his lung to drain it because Dr A thinks it might resolve. Based on the fact that Rich talked for over an hour without coughing—I think he's right. Before surgery he barely gave one word responses without trying to hack up a lung.
I am so afraid to hope, more afraid not to be grateful. I will sink into my hot bath, light candles and incense, Enya on the stereo and cling to the joy of being in the presence of my husband and best friend for the first time in months. “How can I Keep from Singing?”
So my brother came and rescued me yet again. By three in the afternoon he had assessed the situation despite the fact that I had the wrong type of ladder; he went for supplies, came back and repaired the leaking skylights, (AND washed them), gave me brotherly comfort and distraction. By four pm I had a shower and my fresh baked macaroni and cheese (one of Rich's favorites), a bag of the things he wanted me to bring plus his rice pillow and his robe and I drove in to see him.
All the way there I struggled with how badly I did not want to go. I wanted to stay home, light incense, sink into a hot bath, crawl into bed and not resurface for a week. And I wanted to not feel guilty for it. The drive was bad enough, but the walk from the parking garage to his room at the ass end of the fifth floor was like trudging through a mile of quick sand in flip-flops. Once I reached his bedside I managed to suck it up. I crawled into bed beside him and we were both amazed at how naturally something clicked.
Since the beginning of US Rich and I have slept like spoons in an antique double bed with room left over. Since he was discharged Aug 11th, I switched sides of the bed so that he would be closer to the bathroom and there would be room for the bedside commode to be right next to him. This meant that I had to sleep on his right side—his PIC line in his right arm and the drain from his liver. Now in his hospital bed I was correctly on his left side again and we both relaxed, and we even discussed how crazy it was that we never noticed before how wrong the adjustment had been.
There was an “NCIS” marathon so we snuggled in like almost normal to watch our favorite show. His wonderful nurse came in and all three of us carried on as if it were the most natural thing in the world for her patient to be cuddled in the hospital bed with his wife on one side and the beeping IV on the other side. She was in pretty frequently to check his temperature because they were waiting for it to reach normal so they could start another blood transfusion. They were getting a bit anxious about it because the order came at 9 am. It took eight hours to cross match his antibodies and just about the time they got that accomplished, Rich started spiking his daily fever. We watched four episodes of “NCIS” like floating in a blessed bubble of normal. By nine pm I knew I had to leave or figure out how to spend the night. I managed to tear myself away and Rich would call as soon as he knew if they would do surgery. He was so miserable I think he was relieved to see me go. There are times when you are so miserable that Jesus Christ would feel like an intrusion.
Either I failed to set my alarm or I slept through it. At 8:30 this morning I was nuking a cup of yesterday's coffee and trying to wake up. At 8:45 Rich calls to tell me they're taking him for surgery at 9 am. Seriously? The one freakin' morning that I manage to sleep past 5:30 and I've got 15 minutes to get my ass on the road for a forty minute trip? This is the same flippin' place that tells us at 7 am he's being discharged and I'm loading him in the car at 7 pm. Really? TODAY is the day that two months of shit has to be resolved at the snap of somebody's fingers? Well, okay then. I wave my magic pom-poms over the phone and assure him that everything will be fine. I tell him I love and there's silence. .. then I hear him crying.
Oh my god do you people realize how much I could hate you for denying me the chance to hold and comfort him before you cut into him again? Seriously. On SUNDAY morning your surgery schedule is so fucking tight that I get fifteen minutes notice for a non-emergent surgery? I am trying so hard not to hate you.
My guts are grinding with the effort of comforting him over the phone. He is simply worn out. He's not afraid. He tells me “I love you, pupshun, but I'm just tired of this and I just can't hurt anymore...please....”
Honestly? I don't remember how I responded, but I think it was pretty good because I do remember that he was not crying when I hung up the phone and dove into my car to get to him.
And I gotta tell ya'--that is one incredibly surreal commute. Twenty minutes from a dead sleep, with half a cup of coffee, on a Sunday morning, forty minutes heading to a surgical waiting room to sit and wait for someone to walk towards me in slow motion to tell me if my heart will or will not shatter into a thousand pieces. Who needs a Red Bull?!?!
You know I'm wanting to pull out my knitting and dig in, but Rich's brother and sister-in-law are already there because they live closer and while I love them dearly, I just want to be alone. In minutes I'm drawn into their attempts to comfort my wait. And gradually we ease into a comfortable silence, and they pull out their bibles and prayer books and I embrace my yarn and needles and the steady rhythm of knit, purl, cable.
There is a big screen TV that is filled with a graph like an Excel spreadsheet on steroids. It is the entire OR at a glance. It is color coded for the status of each operating room. On the entire grid there is only one block active. OR-6. Right now it is chartreuse, which means the surgery is in process. From fifteen feet away I can watch the chartreuse block move with the time passing. Suddenly I look up from my stitches and see the block has changed to deep purple so I check that out. Purple means recovery. It is 11 am and a few minutes later I see Dr A coming our way.
First thing out of his mouth is an apology for how little notice I received of surgery, and he tells me that he knew only five minutes before I did. (Knowing Dr A as I do, if he told me the sky were now green I would believe him.) It takes me a few seconds to realize that he's trying not to smile. (You'd have to know him) He tells us that surgery went better than he hoped. To sum it up for you, he removed approximately 1-1/2 cups of necrotic tissue and puss from the liver. The drain we have been living with for the past five weeks was like trying to suck mashed potatoes through a swizzle stick. The IV antibiotics were barely keeping pace with the infection. He checked out all of the surrounding area and nothing was leaking into the liver, he did not have to resection any bowel, bile ducts were in place and he is confident that everything was a result of dead tumors rotting in his liver with nowhere to go. He replaced the old drain with a new one at the surgical site and assured me it was strictly a surgical drain that would probably come out in a week or two, and he would probably go home Thursday or Friday. What do you say to the man who unlocks your prison cell and leads you into the sunlight?
At 11:15 Dr A wraps it up for us, tells us that someone will call us when Rich is moved from recovery to his room. Two and a half hours later we're growing a bit concerned that Rich is still in recovery. The phone has rang but not for us. So I know the phone is working. Then, I remember where I am and roll my eyes at how silly I am for forgetting where I am. I tell his brother, “Ed, go to the phone, call the front desk and ask what room Rich _____ is in.” He looks at me funny like a reasonable person would. I say, “trust me, just call like you're sitting on your couch and want to send flowers.” Sure enough. Rich is back in his room.
We walk into his room and Rich says, “jesus, where have you guys been?!?! Buddy and Michael have been here and I thought maybe you'd left.” No, dear. We were sitting in the surgical waiting room waiting for the phone call as directed. Rich had been in his room for 1-1/2 hours. I am trying so hard not to be angry.
The three of us are frozen at his bedside. We're trying to comprehend what we're seeing. His color is good, his eyes are bright, he's fully engaged. He's yacking like a magpie. Every other sentence out of his mouth is--”I can't believe how good I feel!” His brother is in shock and he last saw him ten days ago before it really got bad. I'm in shock. He's talking in complete sentences, and actually seems to care that I am present. He's holding my hand (not the other way round) and his skin feels warm rather than hot, and it's not clammy. I need someone to pinch me but I'm afraid to wake up from this dream. When it's just the two of us Rich tells me, “I woke up in recovery and my first thought was....I must be dead because I feel so good.”
A few minutes later his body is responding to the trauma of surgery and he's ready for some pain meds. The nurse pushes dilaudid and that's my cue to head home because I don't need to listen to two hours of Rich singing Christmas carols.
I leave the hospital knowing they may not have to puncture his lung to drain it because Dr A thinks it might resolve. Based on the fact that Rich talked for over an hour without coughing—I think he's right. Before surgery he barely gave one word responses without trying to hack up a lung.
I am so afraid to hope, more afraid not to be grateful. I will sink into my hot bath, light candles and incense, Enya on the stereo and cling to the joy of being in the presence of my husband and best friend for the first time in months. “How can I Keep from Singing?”
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