Day 343--Changing of the Guard

We had a good meeting with Torger's new doctor, Peter McSweeney, this morning, and Torger thinks they'll get along just fine. We'll have to go down to his clinic at Presbyterian-St. Luke's in Denver in the next week or so to meet with his team and get a full patient work-up, but after that, Dr. McSweeney will be able to see Torger when he's in Fort Collins for his monthly rounds. In the meantime, he wants to take the catheter out of Torger's chest as soon as possible (HOORAY!!). After being in for a year, it could be doing more harm than good at this point. He also wants to start scaling back Torger's drug regimen and said he can immediately stop the Ursodiol (which he's been taking 3x a day) and the Nexium (which he's been taking once a day). He's also leaning toward stopping the antifungal medication, Vfend, in the next few weeks, which our insurance company will love--this is the pill that costs $3,500 for a monthly supply. He does want Torg to start taking some medication for the GVHD in his eyes, which creates granular crystals that seem like a more intense, sharp and glassy version of the "sandman" crud that we all wake up with in our eyes once in awhile--and he wants him to see an eye doctor in the near future. Last but not least, he ordered him to take extra Vitamin D and calcium and to get a flu shot. This was a surprise because we didn't think he could do that until he gets all his other vaccines, but Dr. McSweeney says "Now." (I got mine weeks ago because of concerns about infecting Torger. Since I work on a college campus where H1N1 is expected to spread pretty broadly this fall, I'm also eagerly awaiting the arrival of that vaccine.) Overall, he seemed impressed with Torger's progress, and we feel he'll handle this next year of care in a very straightforward, no-nonsense manner, which works well for us. I sent Dr. Tse an e-mail to let him know the appointment went well, and he seemed pleased to be able to transfer Torger to a doctor whom he knows and respects. It really feels like we're nearing the end of Part I (first year after transplant) and heading on to Part II (second year and beyond).

Day 342--Nothing New

"I haven't read your blog in awhile...how's it going?"

Several times when I've run into friends lately, they've said the same thing. And I have to confess to them that they haven't missed much, since I haven't updated the blog in a long time. There just hasn't been much to report. Torger continues to do well, despite ongoing issues with GVHD and dry mouth, and we're just clicking off the days until his one-year anniversary in October.

But tomorrow is actually a big deal because we're meeting Torger's new doctor. For a variety of reasons that have nothing to do with how much we love Dr. Tse, we're going to be switching to Dr. McSweeney, a nationally known transplantation expert who's affiliated with Presbyterian-St. Luke's and its Rocky Mountain Blood and Marrow Transplant Program in Denver. Both Dr. Tse and our local oncologist, Dr. Romero, want us to make this switch--and it will be easier on us because Dr. McSweeney comes up to Fort Collins once a month to see patients like Torger who are in recovery.

We first discussed this switch with Dr. Tse several months ago, and initially, the idea of changing doctors was kind of traumatic--even more so because it also means changing hospitals, and we're pretty attached to the nurses and staff at CU Health Sciences. But now that we've adjusted to the idea, it seems like a good move. Most of Torger's care is being managed here in Fort Collins now anyway , and we're primarily just communicating with Dr. Tse by e-mail...which we'll continue to do. (Once these docs save your life, your theirs forever.) Not having to go down to Denver for appointments unless there's an emergency will be a real blessing. And it's all part of getting back to normal life. So we'll see how it goes!

Day 299--Latest Health News

We saw Dr. Tse on Friday for the first time in several weeks. Torger still goes in for lab work weekly and sees Dr. Romero at the Cancer Center here in Fort Collins every couple of weeks. But our check-ins at the hospital in Denver are becoming much more infrequent...in fact, unless there are problems, we won't have to go back until Torger's one-year anniversary in October. But it was good to meet on Friday to touch base and ask some of the questions that we've been saving up. Torger, of course, wants to know if he can get off any of the meds any time soon. Answer: Nope. Dr. Tse was very clear that he'll probably stay on this same regimen for a full two years. While it's easy for us to get fooled into thinking Torger's doing well and starting to fight off germs on his own, at this point, the drugs are still probably doing most of the work. He's still taking anti-fungals, anti-virals, and anti-bacterials, so it's tough for germs to penetrate that armor. Our next question was whether they could take the catheter out of Torger's chest. Since I'm no longer infusing him with anything, it's only used for blood-draws now, and we have to clean the lines and flush them with heparin every night. We're worried about it getting infected, and the dressing around the catheter has been irritating the already thin and sensitive skin on Torger's chest (one of the few spots he continues to have active GVHD). But Dr. Tse said he wants to wait until the October anniversary before removing the catheter. He did reduce the number of blood draws from weekly to every other week. Hooray! And he said Torger's cell counts continue to be astounding. The number he's watching most closely right now is the platelet count, and Torger's numbers are slightly above the normal range...meaning that he's got a little infection-fighting reserve now. He also confirmed that Torger will be able to get his vaccinations on his anniversary date. But he reminded us to remain cautious and remember that the first two years are still a very fragile period. In particular, he ordered us to keep Torger out of the sun. Apparently, it can trigger more aggressive GVHD, and that would require Torger to go back on immunosuppressants. For the most part, we've been pretty careful to keep him out of the sun for any length of time, but he's really craved a little bit of it here and there. We just have to keep the sunscreen handy at all times. Torger's still having a little bit of visible GVHD , and we discussed whether this would continue for the rest of Torger's life. Dr. Tse said that the hope is to reach a state of "immune tolerance," generally after two years, in which his body and the donor cells are completely comfortable with one another. We also discussed Torger's continued problems with "tongue-opathy" (Torger's term)--the ongoing inability to taste after more than a couple of bites, and the sensitivity to formerly friendly foods like tomato sauce. Dr. Tse said this was probably complicated by "dry mouth," which Torger's also had, and encouraged him to drink as much as possible when eating. But it sounds like this could go on for awhile. It's not harmful...just irritating...and we can live with that.

We spent the last part of our session with Dr. Tse talking about health-care reform. He mentioned that as a doctor, he usually has no real idea what kind of financial burden his patients face as a result of the care he's providing...and he was a little shocked when we gave him some specifics. (For example, we were billed a couple of hundred bucks when they flushed Torger's catheter lines one day at the clinic...something I can do at home for the cost of the syringes.) We've been extremely fortunate to have help from family and decent insurance coverage throughout Torger's illness and our hotel stay, and we're lucky to earn enough to be able to manage the almost daily out-of-pocket costs and co-pays and prescription costs that still easily run into thousands of dollars, over and above what insurance will cover. But again, we are VERY, VERY lucky. We don't have kids to feed or college funds to save for. We're not trying to pay off student loans. We weren't already carrying huge debts when Torger got sick. I had a large supply of sick leave and vacation time saved up that I'm still drawing on when I need an afternoon off to take him to the doctor. Under almost any other set of circumstances, this illness would force most families I know into bankruptcy. Quickly. One bottle of Torger's anti-viral medication costs more than $3,500 a month. We pay a reasonable co-pay. But if you didn't have insurance, what option would you have? For a lot of people, the most practical option is just to die. These are people who are as young as Torger, and have just as much chance for recovery, but who aren't poor enough to qualify for assistance or rich enough to afford a decent insurance plan. They're the people we've seen cancelling their clinic and treatment appointments because they couldn't afford a cab ride to the hospital, much less the cost of the appointment. We see people who are in the middle of chemo treatments and seriously ill trying to get themselves to the hospital on the bus. When Torger and I hear people hypothesizing about the theoretical horrors of government-run health care, we both get angry. The system that exists is already forcing life-and-death choices. We've just been very, very lucky.

Day 276--One More Week Down

Yay! It's Friday afternoon, and Torger isn't doing the radio show tomorrow night, so we're looking forward to the weekend. After my stressed-out post yesterday, I'm feeling much more clear-headed today. Torger and I talked about it, and we're going to keep focusing on setting up systems that will help us to stay on top of things. He compared our situation to a waiter in a restaurant on a slow night. When the place is packed and everything's in a frenzy, the waiter is right there--filling every water glass, remembering every special request, running from table to table. But when the place is slow, it's harder to stay focused, even when there are only one or two tables to watch. (We've both worked in restaurants, so this analogy makes total sense to us.) But the mark of a true pro is to be able to pull yourself together and do the job. For all we know, Torger could be dealing with side effects and taking medications for the rest of his life, so we have to really make it part of our lives...not just an add-on. I can't get stressed about not being perfect, and we both can't let ourselves get careless. It's a delicate balance.

In the meantime, the last couple of weeks have actually been very nice, in part thanks to this blog. Torger's best friend from junior high found the blog and got in touch, and we had a great time getting together with him for dinner last week...he's grown up to be a really nice guy. Kevin asked to see some of Torger's art, so Torger started pulling out some of his sketches from the hospital and prints and even some of the collaborative stuff of old. It made us both keenly aware of how much he needs to get his stuff organized--neither of us could find some of his fairly large pieces. But it also made him realize how much he wants to start working again. While he looks good and feels good, his stamina is still not what it once was, and he hasn't done any drawing since the transplant (though he was prolific throughout his chemo). As we try to get more structure and responsibility back into his life, building up his strength for drawing will be important. So this week, he got out his bike and went for a couple of rides...something he hasn't been able to do for a year! He's not doing any long treks, and nothing risky (tetanus is always an issue). But the exercise is good for him, and it helps him feel stronger. Now I just have to get my bike out and do the same thing.

Day 275--What's the Deal?

We're 25 days away from reaching Day 300--a huge milestone. And for the first time, I find myself really hitting the wall as a caregiver. When we were still living in the hotel and going to the hospital almost daily, I became friends with another woman whose husband was recovering from a transplant. One day, just sitting in the waiting room, she broke down and told me, "I just want to run away!" While I tried to comfort her, I was also taken aback because I'd never once felt that way with Torger. If anything, I wanted to be glued to him and not let him out of my sight. And I've still never felt that desire to flee. But I do feel myself checking out more frequently and feeling more and more exhausted by the routine, even though the routine gets easier on a monthly basis. I just seem to be losing focus, and I can't let that happen. Last week, I was at work and completely forgot Torger's doctor's appointment! The office called home, and then Torger called me to tell me that he'd gone ahead and rescheduled for the next day, but I was mortified. Yesterday, I forgot his morning meds! A few days ago, I opened one of his med bottles only to realize that I'd neglected to go to the pharmacy the day before. I don't understand it, and I'm a little disappointed to see this in myself. I know that some of it is July--July is always a tough month for me between the hayfever and heat. I just wilt. And I also know this isn't something I can soothe away with a pedicure or a massage. There's an internal stress that's been churning in me for a year and I haven't had the freedom to deal with it. I've been relentless in keeping up with the details, to the point where I go to bed mentally sorting through insurance claims. And now that we're back in our home routine, and he's feeling better and getting more active, my brain has decided to take a subconcious breather. But again, I can't do that. I need to find a way to keep focused. So I've decided we're going to make a checklist, and I'm going to start making Torger monitor some of his own needs more closely, using that list. It'll be good for him, because he really wants to get back into having more structure and responsibility. And it'll be good for me because I just need a break.

Day 262--Thinking of You

We started this blog when Torger went in for his transplant as a way to keep family and friends updated, but I've also harbored the hope that it might someday be of use to another family going through a similar process. An acquaintance of ours went through a transplant a few months before Torger, and I learned a lot (still do, in fact) from following his wife's blog on CaringBridge.com. I thought about this again last week when I learned of another friend who just got diagnosed with cancer and will be facing a pretty aggressive treatment regimen in the next few months. I'm a little embarrassed that, when his wife first shared the news, I immediately started blurting out caregiver advice. In retrospect, this seems pretty tacky. But in thinking about those first few weeks after Torger's diagnosis, I feel particularly grateful for some of the advice that was offered to me that turned out to be really significant in managing this past year:

• From dad Jon to me: Remember the advice they give you on an airplane when you're traveling with a child--if the oxygen masks deploy, put on your own mask first. This is something I've repeated to myself constantly over the last year. I have to make sure I stay healthy and rested so that I can take proper care of Torger. Even now that he's feeling stronger, I'm still the one who has to make sure he takes his many meds in the correct dosages at the right times, that he eats a diet that gives him enough calories and nutrients and balance, that he doesn't push himself too hard. And if I get over-tired or strung out, I can't keep up.
• From friend Jean: Start a file or notebook to match up bills and receipts as they come in or you can wind up paying much more than you owe. The volume of bills and insurance papers continues to be pretty overwhelming...even a routine appointment at the hospital can generate several statements from different providers...and if I hadn't set a system up early, it would have been a real mess within a very short time.
• To Torger, from one of the oncology residents at the hospital: Take responsibility for your own care. The resident came into Torger's room one day when I wasn't there and asked him what meds he was on...and Torger couldn't tell him. The next day when the resident came back in, Torger had the names and dosages memorized and was able to recite them. It's a lesson he's never forgotten. Even when he's exhausted and feels terrible, he needs to remember that he's in charge of his own care. This has helped him now a number of times. When he was getting too much magnesium post-transplant, for example, he wouldn't stop telling his doctors and nurses that the magnesium was making him sick until they ran a test and found out he was, indeed, getting too much. It's really tempting to defer to medical expertise, but ultimately, it's his body and he has to take charge of it.
• Also from Jean: The Internet is a really great tool for learning about an illness, but at some point you need to stop reading online. It's really easy to start getting freaked out by seeing frightening statistics or reading other people's horror stories. That quickly stops being helpful and starts being destructive. Keeping Torger in a happy, upbeat frame of mind has been absolutely essential to him getting well.
  
• From our nurse, Chris: Beware of "Chemo brain." Chris cautioned us early on that chemo can make a person's brain fuzzy for months, even long after treatment. She said that people sometimes panic because they can't remember things and think they're just losing it, when it's still just the impact of the chemo working it's way through the system. This turned out to be really, really helpful when Torger started forgetting names and mixing up words after he got out of the hospital. Rather than immediately assuming Alzheimer's, we chalked it up to "chemo brain," and he did, indeed, get over it.
  
• Most important of all is the advice we got from several people who'd been through traumatic experiences: Learn to take help when it's offered. This has been really, really hard, as I suspect it is for most people who are used to being independent or being the ones to offer help to others. I was reminded that I'm not the only person on the planet who cares about Torger (or about myself), and people offer to help because it gives them some way to show it. So on their advice, I came up with a few, concrete suggestions for how people could help...yardwork was a big one. Torger has always been the one to keep our landscape in shape, and he still isn't allowed to touch soil. When he was in and out of the hospital last summer, I didn't have time to keep up with it. And so one day last summer, friends from work showed up and in a morning's time had pulled all the weeds, dug out a dead tree, trimmed bushes, cleaned gutters and turned our yard into a showplace. This was--and continues to be--just overwhelmingly sweet to me. The kindness and care they offered covered me like a blanket, and I was able to take that into the hospital and share it with Torger, who was also overwhelmed. We both sincerely believe that he's alive because of the generous help we've received from our friends, from Jon, from Mom and Rich, from all my siblings and their families, from Torger's aunts and uncles and cousins, from co-workers, from friends of friends and old high school classmates who touched base through Facebook, from our neighbors, from our doctors and nurses, and from the Leukemia and Lymphoma Society in Denver. It's a hard lesson to learn, but it's essential to getting through a really rough period of life.
  

This advice was all really helpful to us, and maybe it will be to somebody else at some point. Every family's situation is different, but these points seem to make sense no matter what. I know they did for us.

Day 248--Still Dealing With Weight

One of the real lessons I took away from our time in the hotel was how much energy I expend every day at home worrying about what I'm going to wear. Sometime in my first week of telecommuting, I had to call my stay-at-home-mom sister and ask, "How do you not just wear the same thing every day?" Because that's pretty much what I wanted to do...jeans and a shirt. And when you're telecommuting, who's going to know (or care) if it's actually a clean shirt or one you just plucked off the top of the hamper? You can't get away with that sort of trickery when you have to get up in the morning and go be in an office full of people who aren't your husband. You actually have to iron and match things and generally avoid the kind of impression you make when wearing stains from last night's spaghetti at 9 a.m.

Of course, none of this is a concern for Torger these days. While he generally likes to put on a clean shirt and clean pair of blue Sears pants, he pretty much wakes up every morning knowing that he will be donning a pair of blue Sears pants and whatever shirt rises to the top of the drawer. But when he does so now, he does it with a persistent little nag from me almost daily: "When are you gonna let me buy you some pants?" The truth is, he's lost so much weight that nothing fits him any more. He's punched new notches in his belt and he still generally has to walk with one hand free for hitching up his trousers. He looks like a 53-year-old wannabe rapper.

I've been setting aside a little money each month to take him clothes shopping, but he just won't do it. He says he's waiting for his weight to stabilize, and that is an issue. Even with all the ice cream and butter I've been feeding him, he's not gaining...to the point where I noticed this week that I can see the outline of the catheter tube poking out in his neck! (Be warned: I'm going to take a picture of this for the blog.) He doesn't look malnourished...just thin.

But I know that's not the entire reason he's refusing to buy new pants. As Jon explained in our recent phone conversation, there's a certain type of guy who feels more manly wearing old clothes. That would be Torger. Spending money on fashion is not his idea of fun. He will never "manscape." He's basically been dressing like a grandpa since he was a kid, and it suits him. When he gets creative, fashion-wise, it's by doing something like wearing a windbreaker under his suit jacket (which, remarkably, looks pretty good on him). He has his own, distinct aesthetic. But I still argue that adding in a new pair of blue Sears pants on occasion is just a matter of practicality, and it's nice to be able to walk around the block without flashing the neighbors. I'm not going to give up this fight.