Forgive Me, Yahtzee

It has come to my attention (from looking at the box) that I've been misspelling the name of that classic Milton Bradley game, Yahtzee...which we play every Saturday night while Torger's radio partner, Randy, plays 1940s songs and obscure fusion music on KRFC. My husband suggests that I must have caught his "chemo brain." In any case, for the record, there is no "c" in Yahtzee.

Day 81--Havin' Some Fun

Torger's tacrolimus levels have been really up and down these past two weeks while Dr. Tse has been away. Managing the tacrolimus (immunosuppressant) level is really important, like fine-tuning a recipe with just the right amount of salt or baking powder. We need enough to allow a little GVHD to develop, but not so much that we encourage a lot of GVHD or send Torger into kidney failure. When Dr. Tse's in town, he calls me after every lab visit to discuss whether we should adjust his levels. Generally, we want to keep his tac count in the 9-10 range. A couple of weeks ago, it hit 18 for a few days, and was still at 11.2 on Monday of this week. By Wednesday it had dropped to 4.3, and yesterday it was at 3.7. I tried paging the doctor on call and left him a message, but I never heard back. So I'm just doing what Dr. Tse and I have been doing for the last three months...upping the dosage gently to try and get it back into the normal range. Dr. Tse expects me to be keeping an eye on this stuff while he's gone because he knows that no one is as attached to Torger's case as he and I are. He's told us both as much several times, but now it's really hitting home. After labs yesterday, Torger got his sutures out from the most recent biopsies. One of the biopsies was of a spot on his left temple that Torger's had for quite a while, which has concerned us both since long before he had leukemia. Dr. Bailey, Torger's dermatologist, reviewed the biopsy results with us and said that the spot did come back as pre-cancerous. Fortunately, they removed the whole spot so he's not worried, but it galls us a little because Torger has been asking doctors in Fort Collins about it for nearly five years and they've just blown off his concerns. (As did the first doctor we consulted when Torger felt sick and was bruising so easily last spring...the doctor who didn't even run a blood test but just prescribed antibiotics. Can you tell I'm still ticked about that?) All of this is an object lesson in the importance of trusting your own instincts about your body and getting a second opinion.

Day 79--2009

Happy new year--and goodbye and good riddance to 2008! Torger and I both managed to stay up until midnight, and we played a little Guy Lombardo as the clock struck 12. (It's actually a digital clock, so it didn't really strike anything at all.) We had our first real date on New Year's Eve 24 years ago, and we got married on New Year's Eve eight years after that. There was no particular reason we waited so long, since we were both pretty set on each other from the beginning. But after several years of peaceful cohabitation, Torger's dad Jon finally called us one day and politely suggested we go ahead and get married already. He actually offered the suggestion quite delicately and diplomatically...but it was the kick in the head we needed. And we've both always been happy that our anniversary is on New Year's Eve because 1) it's impossible to forget; and 2) it's a built-in excuse not to have to do anything or go anywhere for New Year's. Our hotel anniversary this year was pretty similar to how we spend most of our anniversaries at home...a quiet dinner, a movie, and Auld Lang Syne. Perfect. And today, we made some cornbread and a pot of blackeyed peas and kicked off 2009 in style. We'll drink that cup of kindness yet, and may it be a happy and memorable year for all of us.

Day 77--I Got A Grip

Sorry about the anxious post earlier today. As usual, we talked it over and Torger put everything in perspective and helped me feel that everything will be fine. "Dr. Torger" basically diagnosed me with PTSD--post-transplant stress disorder--and reminded me that Dr. Tse won't actually LET us go home until he's confident that Torger is stable. He reminded me how much I've missed being at the office, and he also reminded me that we have a phone at home and only live a half mile from where I work, so it's not like I won't be able to rush home and help if there's a problem. Besides which, he's been in "patient mode" for more than half of 2008, and he's really looking forward to getting home and having a little of his life back. While I can work at the hotel, which has helped keep me sane, he's pretty constrained here and will eventually start to wither away if he can't get back to being a functioning, independent adult. My earlier post had a lot of "I's" in it, but I'm only half of the team who's been keeping this whole ship afloat. Torger's been handling the tough stuff, and if he's ready to handle the next stage, I am, too. The transition will be tough at first, if only because I'll be constantly worried for the first few days, but we're going through all this so we can get back to a normal life, not stay in a constant state of care-giving and -receiving. It's important for me to remember that we have all of medical science working to keep him alive, and he's probably not going to quit breathing now if I leave the house for a couple of hours.

Day 77

I've been dealing with a weird wave of sadness and fear today, when I should be happy that we're now only a few weeks away from going home. Ever since Torger got out of the hospital, I haven't been able to be apart from him for more than 15 minutes or so, which means we're together almost constantly 24-7. And I realize that I'm a little terrified at the thought of going back to a semi-normal life, where I'm at work all day and he's home by himself. What if something happens and I'm not there??? For some reason, almost all the people we've met or known who are dealing with a transplant are retired, so this isn't an issue for them. When they go home, it's a pretty smooth transition from the hotel routine to a similar routine in their own house. Even though I've been working while we've been here, our daily routine completely revolves around Torger's post-transplant care. I wake up early so I can get work done before he wakes up, because when he gets up I need to make sure he eats and gets his morning meds down without getting sick. I squeeze in work around clinic and lab appointments, and we do any errands like grocery shopping or the pharmacy or the bank during the day because we have to go together...and it's tough on him to be out in the cold at night. I make him lunch and make sure he has his 2 o'clock meds and then his magnesium infusion, which takes three hours. I'm constantly on the phone with the insurance company, or with the hospital trying to get things scheduled, or with the pharmacy that handles his magnesium delivery. Then I squeeze in more work while he rests in the afternoon. Sometimes he gets on the computer and surfs the net, and because we're in this small space he can chat at me about everything he's reading and I can hear him while I'm cooking or filing or whatever. I make him eat something for dinner, and sometimes try and get us both to get a little exercise before his nighttime meds...and frequently find myself on the computer at 11 o'clock at night finishing up what I didn't get done during the day. I feel like I've more or less been able to hold it all together as well as I can, but it helps that through it all, I always know what's going on with him almost every second. I have to remind myself that tomorrow we'll be celebrating 24 years together since our first date, and for nearly that entire time, Torger hasn't needed a babysitter. He's very capable and self-sufficient. But his recovery is still so fragile. I've always understood how important it was for his health that I be here as a full-time caregiver during the 100 days, but I'm only just now realizing how important it's been for ME. The thought of going home is really scary and I don't feel ready.

Day 76 Again

I forgot to mention in my overly lengthy post just now...as of yesterday, we're more than 3/4ths of the way there! Day 100, here we come.

Day 76--No Quick Fix

Another day, another visit to the Bone Marrow Infusion Clinic. We go in to the BIC every other day, and they typically draw three vials of blood so we can monitor all of Torger's levels...red and white cell counts, platelets, neutrophils, potassium, magnesium, and a lot of things I'd never heard of before he got sick, like bilirubin. (I found this definition of bilirubin on Wikipedia: "Bilirubin, formerly referred to as hematoidin, is the yellow breakdown product of normal heme catabolism. Heme is formed from hemoglobin, a principle component of red blood cells. Bilirubin is excreted in bile, and its levels are elevated in certain diseases.It is responsible for the yellow colour of bruises and the yellow discolouration in jaundice." This is pretty much how Dr. Tse described it to us. It's a waste product, essentially, and we have to watch it carefully because it's an indication of how well Torger's liver is functioning.) After they draw the blood, we wait in the BIC for at least an hour until the first set of results come back, just in case he needs an infusion or something is really off. During our BIC visits, the lab checks whether Torger's Tacrolimus (immunosuppressant level) is elevated...which it was for several days last week, although by Saturday it was back in the normal range. The BIC nurses also change the dressing on the catheter in Torger's chest once a week and make sure we have the magnesium supplies and equipment to do his infusions at the hotel. Often, like today, we go in for our regular BIC appointment and the nurses pass on orders for other tests Torger needs that day (today it was a chest X-ray). So really, the BIC is kind of the center of our post-transplant care, even though we have our regular Wednesday visits with Dr. Tse in the Cancer Center. The BIC nurses see Torger a lot more often, and they seem to keep a pretty close eye on their patients. On Tuesdays, the entire BMT team--doctors, nurses, social workers, administrators--meet to discuss every current patient. So when we run into staff members we haven't seen in awhile, they always know exactly what's going on with Torger...which never fails to surprise us. While our weekly appointment schedule often seems chaotic to us, it's clear that the entire operation is really a pretty well-oiled machine.