Our Story Continues...With Photos!

So here we are, more than two months since my last post, with continued good news to report. Torger's latest biopsy shows that he is 100% engrafted with donor cells, and there are no signs of rejection or leukemia. While he continues to have an occasional spot of GVHD, it's all been very minor. And he was finally able to receive his first round of vaccinations this month! He's on roughly the same vaccination program that a newborn follows...he'll go in for shots every couple of months over the course of this coming year before they'll consider him up-to-date. But little by little, he'll be able to fully reclaim a normal life.

If you're squeamish, you might want to stop reading now. But I thought it might be interesting to show exactly what a bone-marrow biopsy looks like, so I took some pictures while Torger was undergoing his latest round. It's a relatively quick procedure that begins with Torger taking some pain killers, then lying face down on the table as the doctors shoot some additional painkillers into his back to numb the point, around his hip bone, from which they'll extract the sample. Here's a photo of the instrument tray in the procedure room, all ready for the process to begin. The instrument with the blue grip is what they will be pushing into his bone once he's numbed. Below is a better view...as you can see, it's a pretty long needle, which is why Torger really doesn't look forward to this procedure. (I just showed him this photo and he screeched, "I never saw what it looks like! Now I know and I can remember the pain! I can remember EXACTLY how it felt!And it hurts!!" He REALLY hates the biopsies.) Even with the numbing, he can always feel the drill going in and the extraction, and he's typically sore for the next few days. The next shot is of the doctor actually pushing the drill into his bone. You can see Torger's white knuckles gripping the edge of the table, but what you can't see is me, standing near his head with what we affectionately call a "puke bucket" in case he gets nauseous. The doctor pushes the needle/drill into his bone and extracts several tubes of blood and what is essentially a "core sample" for testing. The doctor actually has to position herself carefully above him so that she can push down at exactly the right angle and exert the necessary amount of pressure...this procedure takes some upper body strength. (One doc was short and actually had to stand on a stool while doing the biopsy.) We've heard many times that Torger is an excellent body weight for biopsies. They actually have much longer needles for severely overweight patients, and one patient was even too large for that needle...it took a lot of work, and the doctor wasn't able to reach his bone. These aren't the kinds of things you normally think about, but this is the type of problem that's standard in the Bone Marrow Transplant Unit. The next picture is of the extracted sample, as the nurse preps it for submission to the lab. They were all very proud of the quality of this sample. While it just looks like a blob of blood in the photo, as they pull it out, you can see that it's a long, thin strand from his marrow. The last photo gives another view. After that, they put a bandage over the hole, make Torger wait a few minutes before standing, then send us on our way to wait for the results. Fortunately, they were all positive, so Torger won't have to do this again for awhile.

Year 2 Day 4--Sigh

Dr. Tse has now officially left CU and Colorado, and since we knew this was coming, we've been working on transitioning Torger's care over to Dr. McSweeney, who's affiliated with Rocky Mountain Cancer Center, the most established bone-marrow transplant clinic in the state. He keeps regular office hours here in Fort Collins, and Dr. Tse felt very comfortable turning Torger over to him as a patient. BUT we just got notice on Friday that Rocky Mountain Cancer Center will no longer be accepting our insurance, as of January. The idea that the largest and most reputable clinic in the state can just suddenly become inaccessible because they can't work with Blue Cross is frightening in and of itself. If CU were to have a similar issue, we'd be in big trouble...there just aren't that many BMT facilities around. So we're keeping our fingers crossed that nothing happens there. And in the meantime, we have to figure out another plan...most likely involving finding another doctor at CU who will take on Torger's case. It's disappointing, because we were really looking forward to having a doctor closer to home. Torger's local oncologist, Dr. Romero, has been very attentive, but he's not a transplant specialist. Torger's really tired of having so many medical appointments anyway, and when a simple check-up takes up most of a day, plus an hour and a half drive each way, it's especially wearing. Oh, well. We'll figure something out.

Day 365--HAPPY ANNIVERSARY!!!

Today marks one year from Torger's transplant! Wow, it's gone fast. It's hard to believe that a year ago we were holed up in his room on the 11th floor of University Hospital wondering if any of it would work. So far so good! This next year will be the real test...if he can get through two years without serious problems, he'll be well on his way to a normal life.

In the last week, he took one big step that's been a long time coming. He got his tubes out! This is my opportunity to offer my photo essay of Torger and his catheter prior to removal. This first photo shows how much he enjoyed having three tubes hanging out of a hole in his chest for a year. As you can see, the lines are rather long, so he had to figure out how to keep them appropriately tucked in to various items of clothing, and rolling over on them in his sleep would wake him up constantly in the night.

This second photo demonstrates that he came to terms with this relatively minor aggravation in his own way. It gave the docs and nurses a painless way to draw all the blood they needed to suck out of his body this past year rather than poking him with needles. And it gave me an evening task since I had to clean and flush each line every night. What it doesn't show is how fragile and irritated the skin is around the catheter site...it was getting really tired of having tape on it for a year.

This third and final picture shows where the tube went in to his chest and then where it connected up through the artery. That isn't a pronounced vein in his neck...that's the catheter! You don't really notice it, and then once you do, you can't look at anything else! We won't be missing that.

But we made our last trip to Interventional Radiology at University Hospital and he had it removed. It held up well...it exploded and had to be patched together twice, but never got infected and never needed to be replaced. I'd post an "after" photo, but it pretty much just looks like a bandage until the hole heals over. Suffice it to say that Torger feels much more free and normal now that it's gone. Arrivederci, baby!

And as you can see from these photos, he looks great. He's put weight back on and has his beard back. He went to the dentist today for a much-needed cleaning (apparently, dry mouth is really hard on teeth), and the hygienist said his gums look better than they ever have before thanks to all the antibacterials he's taking. So that's a plus.

And with that, I'm going to sign off so we can go celebrate one amazing year of life together!

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.

Day 241--Tired. So Tired.

After not having socialized a whole lot for the past year, we've suddenly had a lot of activity these past couple of weeks, and it's really been a lot of fun. Friends Cathy, Kip, and little Sarah were in town and we were able to get together a few times, which, among other things, gave Torger a chance to show Sarah how to explode caps on the sidewalk by hitting them with a rock. My high-school pal Eric came through Fort Collins long enough to have an early breakfast two Saturdays ago, then our 14-year-old niece Claire visited for almost two weeks. (She stayed with Mom and Rich, but we claimed as much of her time as we could wrangle...we'd keep her all summer if we could! She's such a great girl and so easy to have around. Listening to her and Torger wisecrack through a cheesey horror movie last night was really entertaining.) But after all this activity (not to mention a fairly hectic time at work), we're both beat. I just need a nap, but Torger still doesn't have a lot of stamina, so he can't go and go the way he always has in the past. We talked about this with his dad, Jon, the other night, and Jon made a good point: After an illness of this magnitude, Torger might not bounce back physically to his actual age of 53, even as he gets well. The illness takes a toll, so he might feel physically about five years older than he is. That makes sense to both of us. On the other hand, Torger's always been youthful for his age, so maybe he's actually just now feeling exactly the way a 53 year old normally would. Either way, he's kinda pooped, so we're going to take it easy and try to have a quiet week or two.

Day 228--Another Reason to Stay Up Late

Torger has really appreciated having the routine of his weekly radio show with Randy to give some structure to his week and give him something to work on and plan for when he isn't up to anything else. So if you're up between 9-11 on a Saturday night, give 'em a listen at KRFC 88.9 (type in KRFC online and you can listen to them live via the comfort of your own computer from wherever you are on the planet). They play every type of music ever recorded...much of it bad, but much of it quite the opposite of bad. Each show has a theme. Tonight will be a little different from usual because their friend, Kip Williams, is visiting from out of town and will be guest hosting with them. Kip is bringing humorous music...so who knows what to expect. The show is always a little hard to predict since none of them really know what the others will be playing.

Now that we don't have as many daily milestones to watch for, I feel a little funny about listing the post-transplant day at the top of every blog post. But in various doctors' appointments, we still often have to tell them what day Torger's on, so it helps me to keep track. (I'm assuming we stop when we hit a year and start over again, but who knows?) They keep careful watch during the first two years post-transplant, even though the number of weekly appointments has diminished. Torger still goes in to have his blood drawn once a week and sees either Dr. Tse or Dr. Romero here in Fort Collins every couple of weeks. But except when something unusual is going on, like last month's cold, that's about all our medical routine is reduced to now. So we're trying to use the extra time to work on getting to our new "normal" here at home. Life in the hotel and hospital forced us to examine some of our routines, and we discovered we're kinda lazy! So we're making little adjustments...trying to exercise more, reading magazines and newspapers when they come in instead of letting them pile up, eating dinner at the table instead of sprawled around the living room, and actually scheduling things we want to do instead of just planning to get around to them. (In the words of my dear friend, Coleman: "If it's not on the calendar, it doesn't happen!") I think we're being subconciously influenced by all the Dear Abby columns I've read to Torger in the last year. When he was in the hospital, we got in the habit of getting the daily newspaper so I could read him his horoscope (against his will) and Dear Abby (which we both like...probably because it often makes us feel better about ourselves). We've continued this practice over the months, and now it is like I have a little advice columnist living in my head encouraging me to behave. We'll see how long it lasts!

And a Postscript for Today: Life Is Short and Wonderful...Never Take It for Granted

Remembering Marine Sergeant Nick Walsh--son of our friends Jerry and Maggie--who we lost in Fallujah two years ago today. This is Nick on the beach with his baby son, Tanner.

Life isn't easy, and it's often sad. But when push comes to shove, it beats the hell out of the alternative. So enjoy the sun, eat something fatty, breathe deeply, and give someone (preferably a person you know) a big, sloppy kiss. Everything can change in an instant, but the good stuff sticks with you through it all.

Day 224--Leukemia No More!

Dr. Tse just sent us the initial results from Torger's most recent bone marrow biopsy. There are no signs of leukemia, and all the previous genetic markers indicating Torger's predisposition toward leukemia are gone. This is just fantastic news. I'm posting the chart he sent showing the progress in terms of leukemia cells since his diagnosis a year ago. As recently as January, some leukemia cells were still evident, which is why they want to see Torger have some Graft Versus Host Disease...the GVHD indicates that the donor's healthy cells are really getting in there and cleaning the bad stuff out of his system. To interpret the chart, AML indicates the leukemia cells in Torger's system...100% AML in the positive column would be very, very bad. Zero percent in the positive column is just wonderful. You can see the impact of the chemotherapy, which put Torger into remission...and you can also see the bad cells trying to re-emerge right before the transplant in October.

Even though we know the disease can still come back, this is a very big, positive sign.

Click on the image to enlarge it and make it readable...it's quite interesting!

Day 222--Comics Interruptus

After Torger's first chemo treatment last year, before he got too worn down, he spent a lot of time trying to organize the stuff in his studio because he was worried about me having to deal with it all if he died. Now, Torger still has a lot of stuff, but he really purged quite a bit at that time. He recycled stacks of papers and old magazines, gave away boxes of books, threw out a bunch of his old work that he didn't want to outlast him, etc. We ordered a set of sturdy plastic comic-book boxes to better store his much-loved collection, and actually made a will to dictate who would get what if he didn't make it. Then shortly after that, the chemo started to take its toll and he got too weak to do anything more, so his room has been sitting in that half-organized/half-chaotic-mess state for the past year. When we did our big dust purge earlier this year, we just tried to get the surfaces clean in that room and agreed he'd have to stay out of it until aspergillus was no longer as much of a concern. Well, even though he still can't be around dirt and soil and many other things, dust isn't as much of a worry now, so this weekend he started back on his room. He didn't plan to...he'd just started looking at some old comics, then started pushing a few boxes around, and then it snowballed from there. As he said, "It was all very organic." It's striking both of us as really weird to be picking up again on a project that's been sitting, untouched, for the past year, waiting to see if he would live. (He did!) I was planning to clean out our closet this weekend, but I've pretty much just been hanging out and watching him. It's exhausting! And there's still an awful lot of dust lurking there below the surfaces, so he's got to pace himself. With most activities these days, he's good for about two hours. He can do his radio show with Randy on Saturday nights, but after two hours, he's done. He can have dinner with our relatives, but after two hours, he poops out. So this project could continue for much of the summer, in two hour chunks. Which, of course, is just fine by me.

Day 216--Another Week, Another Hole in the Hip Bone

Torger had his latest bone biopsy on Friday. He lies flat on his stomach, and Dr. Tse bores into his bone to extract a big tube of blood and what looks exactly like a core sample from his marrow. My job is to sit at Torger's head holding a bucket because he's always afraid he's going to throw up. He never does, but he always feels like he could...actually, he usually jokes around with Dr. Tse and the nurse through the whole procedure. Torger is very good about demanding the blue liquid morphine he needs to get through it, although he has yet to convince them to give him "seconds." (Being Torger, he'll never quit trying.) This latest drill wasn't as bad as some of them have been in the past, but it's never a fun process, and Torg is usually sore and a little cranky for several days afterward. We won't find out the results for several days yet, but we're hoping everything is continuing to go well. The big risk right now is that the leukemia could come back, and this is where any signs of that would show up. Generally, Torger feels pretty good these days, although he's had more GVHD (graft vs. host disease) since going off the immunosuppressants. He's got a rash around both ankles that is somewhat more severe than the GVHD he's had on his skin before...but still not bad. Dr. Tse said it was just what he wanted to see, and he'd only get concerned if we see it on more than 25% of Torger's body. He also thinks that Torger might have some GVHD in his mouth, which--along with some peripheral neuropathy--would explain the trouble he has tasting food. He thought Torger's lungs still sounded a little funky, so he gave him a couple of inhalers to start using regularly, and they already seem to be helping. So now we're just waiting for biopsy results and hoping they're clear so that he won't have to get drilled for another six months!

Day 212--Wow! That Went Fast!

Torger's second hundred days post-transplant just zipped by. The first hundred days, with the long hotel stay and constant appointments, seemed so monumental, but the second hundred days passed while the calendar largely just sat in my desk drawer unmarked. Either we've really started to slack, or life is getting much closer to normal. We go down to Denver tomorrow for another bone marrow biopsy to check for any signs of the leukemia returning, and then we're hoping Torger won't have to have another biopsy for six months to even a year. He's gotten pretty sly about wheedling Dr. Tse into giving him what he wants. Each visit, Torger plots to ask for something...scaling back the infusions, reducing the number of weekly blood draws, etc. And usually, he's pretty successful at getting his way. Two weeks ago, we were able to stop his magnesium and saline infusions entirely, which is a huge step. That process has been a huge pain in the rear for both of us...mostly for Torger, who had to haul the pump and saline bag around the house for three hours a day. He still has the Hickman catheter in his chest, so I'm still flushing his lines with heparin every night, but we think they'll even be taking the catheter out soon. Torger's been a good sport, but he admits it's hard to sleep with the catheter's three lines and associated hardware all poking him in the chest. He also persuaded Dr. Tse to take him off his blood pressure medication, which they'd put him on because of all the other drugs he's taking. Torger's never needed blood pressure medication before, and Dr. Tse agreed that there's no point in keeping him on it now. In fact, they're so NOT worried about Torger's cholesterol that they've instructed him to drink whole milk instead of skim and to eat at least a couple of eggs a day! Apparently, his body needs protein and fats right now, and since he's still struggling to keep his weight up, he gets to eat all the ice cream he wants these days. Not too bad, eh?

One Year Down!

Yesterday marked exactly a year since our local doctor put us in an ambulance and sent us down to Denver because of Torger's astonishingly high white cell count. That was a terrible day, and not exactly something we want to spend a lot of time reminiscing about...but this is an important anniversary, so I'm going to reminisce just a little.

Here's where we started on May 12, 2009: Torger had been feeling sick for weeks with what felt like a flu bug that he just couldn't shake. I was actually getting irritated with him because he seemed to be napping constantly and not keeping up with things that needed doing. He was apologetic, but just kept saying that he had no energy and needed to get over his darn cold. Then he started bruising from just lying in bed. An urgent-care doctor had put him on antibiotics and sent us home, telling us to give them time to work. When I called the doctor back mid-week because the drugs didn't seem to be working, he said we just needed to give them time and scheduled us in for an appointment a week later. We spent an awful weekend during which Torger couldn't eat and spent all day and night rocking on the couch or dragging himself from one end of the house to the other because he was afraid to go to sleep. He resisted going back to the doctor, still thinking this was just a bug he could fight off if he worked at it. So I tried to go into work on Monday morning, even though I was a wreck, and my boss and friend, John Lincoln, ordered me to go home and drag Torger back to the doctor. So I did (Torger didn't require much convincing by that point). We saw another urgent-care doctor this time, Dr. Rubright, who took one look at Torger and ordered some blood tests. Then he told us to go home and wait for his call. He called an hour later and told us to get over to the hospital. Torger was feeling hungry and wanted to sleep, so I asked if we needed to go right away...and Dr. Rubright got stern and essentially said to get our butts over there. We went to the local hospital, and they had an ambulance ready to take us to Denver. While we were waiting for the transfer orders to go through, we sat in a room on the oncology floor. Beverly, the nurse on duty, was the first to intimate to us that Torger probably had leukemia...she hugged us both and told us we were going to need to gear up for a fight. Then an oncologist came in and explained that Torger's white cell count was too high to treat in Fort Collins, so they had the ambulance ready to take us to Denver and there was a room waiting for him at University Hospital. Somewhere in there I called or e-mailed my mom to let her know and to make sure she could feed our cat, who was still alive at the time.

The ambulance ride was kind of fun. Torger was alert and cracking jokes the whole time, to the astonishment of the EMTs. They showed us the different tools they had in the back of the vehicle for dealing with different kinds of crises...and they got us to Denver in record time.

We were taken immediately up to the 11th floor Bone Marrow Transplant unit. Dr. Eamon Burge, a resident, met us and explained that, even though it was late in the day by that point, he'd persuaded the apheresis team to stay and treat Torger because his white count was at such dangerous levels. Everyone seemed astonished that Torger was even conscious, much less trying to talk to people. They put a port in Torger's neck and Jessica Jones, the apheresis tech, spent most of the night with us, operating the machine that essentially sucked the excess white cells out of Torger's body. She showed me the bags of cells that she was pulling out, and they looked like pureed tomatoes...they were that thick. When your blood fills up with such a surplus of thick, pulpy cells, your heart and arteries can't pump it any more. In a short amount of time, if untreated, the pressure exerted on his optic nerve would have blinded him, but that wouldn't have been much of a problem because he would have been dead anyway.

They had to give him a couple of pheresis treatments before his cell levels were under control, but over the next couple of days, the doctors on duty--Dr. Burge and a post-doctoral fellow, Dr. Tut--confirmed with us that their biopsies showed Torger had leukemia. Dr. Tut sat down with me while Torger was having his catheter lines put in and again warned me that we were in for a long and painful treatment process that would definitely involve chemotherapy and might require a bone marrow transplant. Dr. Tse was out of town at a meeting at this point, so we didn't meet him for several more days...and we wouldn't learn for sometime that Torger was his first transplant patient since he'd arrived at University Hospital.

Torger stayed in the hospital for nearly a month after first round, going through his initial cycle of chemotherapy. Garry and Carolyn gave him binoculars so he could enjoy the view from his 11th floor window...he watched the entire Colfax marathon that way last Memorial Day. The rest of the summer went by in a blur of doctor's appointments and trips up and down I-25. By fall, we were ready for the transplant and everything it entailed.

And now, here we are looking back from the vantage point of a whole year gone by. The last month at our house has been pretty germy. Torger had some spots on his lungs that were tested and re-tested and don't seem to have been an issue. His cough cleared up, and then I got it...and a little bit of strep in the bargain. Then Torger caught a full-fledged cold...the first real test of his baby immune system (aided, of course, by a continual dose of antivirals and antibacterials). It was hard to watch him dealing with it last week. It was clear that his entire body was working on fighting the cold virus, and he was paler and sicker looking than any cold sufferer I've ever seen. But he got through!! He still has some sniffles, but he got through!! He noted that even two months ago, he doesn't think he could have beaten a bug like this one, and now he can.

That's what this whole year has been about. A year from now, looking back, this will all seem so strange and remote. Torger will sneeze, and it won't wake me in the middle of the night in a panic. He'll get a scrape on his leg, and we won't race for the topical ointments. We won't be agonizing over every pound he loses wondering why. We're not there yet, but we will be.

Thanks to all of you who have stayed connected (or in some wonderful cases, reconnected) through this blog and other means this past year. We're really, really grateful for the friendship and continued support, and we look forward to a time when we can do a lot more giving and a lot less receiving. Just another year can make all the difference.

Day 188--Happy Birthday!

Yesterday was Torger's 53rd birthday, and today, we got an amazing present from an old friend who's been in touch and supportive throughout Torger's illness. I just wanted to share this, since it's people like Susie whose incredible selflessness makes future birthdays possible for people like Torger:

Dear Susan Gleason,
Thank you for joining the National Marrow Donor Program® Registry. Your registration is now complete. As a member of the Registry, you are listed as a potential donor for patients searching for a match. If you become a possible match for a patient, we'll contact you with the next steps. You could be a match for a patient soon, many years from now, or you may never be the best match.

Susan, welcome to the worldwide movement of people passionate about saving lives. Out of a Registry of millions of potential matches, you may be the one a patient needs.
Thank you for joining,National Marrow Donor Program
--------------------------
Thanks, Susie!

Day 185--Perhaps Just a Hive?

We went back to the hospital on Tuesday for Torger's bronchoscopy, but we didn't learn much. They said there seem to be two spots on his lungs, but they're "diffuse and remote," and the doctors couldn't reach them with their scope so they couldn't get a biopsy without potentially poking a hole in his lung. Instead, they gave him some pleasant medications, then put a tube down his throat, flushed his lungs with water and vacuumed the water back out again. After that, they were going to put the fluid in a petri dish to see what, if anything, grows. Torger and I are both pretty much convinced the spots are the same type of lesions he was getting on his skin, which the doctors are now pretty sure are a response to his antibiotics. In that case, we're pretty sure they're harmless. They could also be some type of mild GVHD, since GVHD tends to go to the lung, skin, liver and gut. Torger was just pleased they didn't have to do a biopsy and clip a little piece out of his lungs! (The nurse told me that while they were prepping him for the procedure, he asked for "seconds" on the drugs they gave him, saying, "Hey, I grew up in the '60s--I can take it.")

We're heading back down to meet with the infectious disease specialist, Dr. Levi, on Monday, so maybe we'll find out something then...if there's anything to find out. After that, our next appointment will be for Torger's 180 day biopsy, which has been a little delayed by Dr. Tse's travels. If that comes back looking positive, we're going to be very happy, especially since he won't have to have another bone marrow biopsy for six more months!

Day 175--Whatever Happened to Salsa?

Everyone who knows Torger well knows that there are pretty much three staples to his diet: salsa, iced tea, and pizza. He eats and enjoys many other foods, but if he has at least one of these three, he's generally pretty content. Now that he's off immunosuppressants, he can have iced tea again, but he's had consistent issues with his tongue post-transplant that have made salsa and pizza hard for him to manage. A lot of fellow cancer patients have told us that food tasted like metal to them after chemo, and fortunately, Torger hasn't had that issue. While he was on immunosuppressants, he just couldn't taste very well...so what he could stomach really depended a lot on texture. Both refried beans and pizza seemed slimey to him. Now, he can taste, but even mildly tangy foods start to burn his tongue after just a few bites, which then ruins his taste for the rest of that meal and hours afterward. And I do mean "mildly tangy"--salad dressings, tomato sauce of any kind, oranges, pickles, green olives--they're all too much for him. It's thrown us both for a loop, since I've pretty much been able to get him to eat a lot of things over the years just by throwing in some hot peppers and dousing the dish with salsa! I am learning to cook bland, and he is impatiently waiting for the day when food tastes normal again. In the meantime, we're just working to keep his weight up and make sure he gets enough nutrients to keep him going.

Day 174--Checking Back In

Wow...I didn't realize that it had been nearly a month since I updated the blog. If anyone's still reading it, sorry about that! The first part of this past month was largely taken up with just trying to get back into some kind of normal routine between work, meals, doctor's appointments, etc. Life at home is considerably more complex, for some reason, than life in the hotel, and we've been a little bit at sea. We were just starting to get the rhythm down when Torger developed his first post-transplant complication, which has required several doctor's visits here and in Denver over the last two weeks. It was just about two weeks ago that we noticed he'd developed three, quarter-sized red lesions on his skin: one on his thigh, one on his back, and one on his ankle. About the same time, he started to have a dry cough that would just show up periodically and then go away. It's not a bad cough...just one that comes up periodically, most often at night when he's lying down or right after he's eaten...and then subsides. Since Dr. Tse is in Hong Kong for two weeks, we went in to see Torger's local oncologist, Dr. Romero, right away. Dr. Romero rightly decided that he's not enough of an expert in graft vs. host disease to be able to render an informed diagnosis, so we e-mailed Dr. Tse who arranged for Torger to get a skin biopsy and CT scan back at the hospital in Denver. The initial biopsy of the lesions indicates they're probably nothing terrible...we think that Torger might be having some kind of reaction to one of his medications. But the CT scan did show something in his lungs that the doctors are calling "a little pneumonia," so they scheduled us to go down to the hospital again today to meet with an infectious disease specialist, Dr. Levi. This is the first time he's seen Dr. Levi, but we really liked her; she's very matter-of-fact and thorough. She was irritated because the pathology results from the skin biopsy weren't back yet, and she said she thought the emergence of the skin lesions and the cough at around the same time was "suspicious." (Interestingly, while Torger was getting undressed for his exam, we found a new lesion on his other thigh...and noticed that the one on his back is almost gone. Hmmm.) She didn't seem to be alarmed about anything, but she also wasn't ruling anything out. She wants Torger to come back as soon as possible for a bronchial test that will give them a more detailed idea of what's going on in his lungs. We're actually keeping our fingers crossed right now that it's just "a little pneumonia" and not something more serious. For the most part, Torger's actually feeling pretty good right now, and we wouldn't be at all worried about such a little cough under normal circumstances. But these aren't exactly normal circumstances, so we're watching out for every little thing. Now we're just waiting for the next test and hoping everything turns out to be no big deal.

But to add to the excitement, the Colorado legislature is now talking about cutting 60% of the state budget for higher education! As you might imagine, this makes life in the CSU president's office a little bit exciting right now. Colorado is already 50th out of 50 states in terms of state funding for higher education, even though we have the highest per capita income west of the Mississippi (yes, we beat California). So slashing higher education is just pitiful. If you live in Colorado, write your legislator and speak out for public education!

Day 146--Keeping Our Focus

Dr. Tse called on Saturday (seriously, what doctor does that?? We just love him...) and once again cautioned us not to get too cocky. Just because Torger's off the immunosuppressants doesn't mean he's healed. He still has a baby immune system, with none of the immunities acquired through childhood illnesses, vaccinations, etc. While we can relax a little bit with this latest change, we can't go hog wild and let Torger start digging in dirt or rolling around in goose poop.

This conversation just reinforced for us that so much of this recovery process is a crap shoot; we've had conflicting advice from different doctors and nurses at almost every step, and we've done well so far just sticking to Dr. Tse's guidance. For now, our best strategy will be to continue to exercise caution and care in ways that make sense, recognizing that we can enjoy each new bit of freedom, but our life will still be restricted for the next two years until Torger's further away from the danger zone. But Dr. Tse did agree that a salad was OK as long as it's well-washed. That's a big step forward in and of itself, and a milestone we weren't expecting to reach for several months yet. Bring on the arugula!

Day 144--Suppressed No More!!

We still can't quite believe it, but Dr. Tse called Thursday night and said Torger could stop his immunosuppressants entirely this weekend. This is much earlier than we expected, but we're thrilled! The immunosuppressants are the last real barrier to him getting a mostly normal life back. Without them, he can eat a salad, pet a dog, take out the trash, and be in the same car with a child. We can even turn our heat back on...although we've kind of gotten used to living without it (and I'm almost looking forward to getting our gas bill this month). This is just one more reminder of how incredibly lucky we've been every step of the way. We'll have to be careful for the next two years; as Dr. Tse has said, the two big risks we face now are infection and return of the disease. One we can control a little bit, and the other we can't control at all. The infection risk is dramatically reduced once Torger's off the immunosuppressants, but we will still need to monitor his health closely, particularly until he hits the two-year mark. When he hits the four-year mark, they pretty much consider him out of danger. We'll still have some limitations...no sushi ever (fortunately, Torger doesn't like to eat fish, raw or cooked), and no rare hamburger again, ever. They don't want us to travel very far from the hospital during the next two years just in case something happens. But those are all things we can live with. The key word here is "live."

Day 141--I'm a Blog Slacker

I haven't done a good job of keeping up with the blog since we've been home, mostly because we're still trying to get our lives into some sort of rhythm and routine. We've both come to appreciate how much easier it was to manage in the hotel because our lives were so simple and contained. If we ran out of oranges or toilet paper, we just had to run down to the front desk! Of course, that also meant completely ignoring the big part of our lives that existed outside our hotel bubble. We pretty much just kept our fingers crossed that our house would still be standing when we got home after four months. (It was.) There's just a lot more involved in life at home, from keeping up with the house and appointments to actually getting dressed for work every day. It's great to be home, and we have NO complaints. But it's tricky trying to re-establish a routine.

On the plus side, Dr. Tse called last week and said Torger only needs to go back to Denver for appointments once a month now...his labwork is looking great and his platelet count is on the rise. He also reduced his immunosuppressant levels again and indicated Torger might be off them completely by the end of March! We're still going in for labwork twice a week at the hospital here in Fort Collins, and we've been seeing the oncologist here in town, Dr. Romero, every other week. But it's just fantastic not to have to drive to Denver as much as we expected we would.

Torger talked with his dad this weekend about possibly working through the Leukemia and Lymphoma Society to help mentor other patients who are preparing for a transplant, and we talked a little bit with Dr. Romero about it today. Torger was concerned that he's been so lucky all along the way, it might just depress other patients, but Dr. Romero said it's really important for people with leukemia and other serious cancers to hear positive news and have a reason for hope. While there's a significant marketing and fund-raising push behind breast cancer, we don't frequently hear the same kinds of success stories and rallying cries for other types of cancer. When Torger was diagnosed, I still thought of leukemia as a disease that affected mostly children...I knew almost nothing about it. We've both gained a lot of strength from friends who have dealt with cancer with grace and beaten the odds, even for awhile. So we're going to talk about this some more and see if there's a way Torger can help.

Day 131--Waiting for the Sun

It feels great to be back in our own home and settling back in to a more normal routine. We were able to get things cleaned up so we could move in last Monday night, and I went back to work at the office on Tuesday. On Wednesday, we had our first return visit with Dr. Romero, a Fort Collins oncologist who monitors Torger's progress so we don't have to go to Denver every week. And on Friday, we went back to Poudre Valley Hospital--just half a mile from our house--to start up Torger's regular labwork there, again sparing us the Denver drive. The nurses in the lab seemed really happy to see Torger alive and doing so well, looking much stronger than he did when they last saw him in September.

Our big challenge for the next couple of months will be keeping warm. We decided not to use our heater while Torger's still on immunosuppressants because the furnace tends to circulate dust in the air. Dust=Danger. So instead, we bought some small radiant heaters, with no fans, that we're positioning strategically around the house to try and keep the temperature tolerable. It's been OK on sunny, warmer days, but if the thermometer falls below freezing, we'll probably have to go back to the hotel for a night. Still, after a week, we've finally got it to the point where we can get the temp up to around the mid-'60s for most of the day, which isn't bad. And once we get the new blinds on the windows this week, our ability to keep that heat inside should improve dramatically. In the meantime, it still feels like we're just kind of camping in the house, but life will gradually start to feel more normal. Torger did his radio show last night, and I'm going to force him to watch the Oscars with me later this evening. And when we go to sleep, we finally get to be in the same room, in the same bed. Even with icy feet and having to negotiate for an equal share of the covers, that's a great thing.

Day 124--Back in the Fort

When Torger was in the hospital for weeks at a time going through chemo, and then the transplant, he learned how to stare straight ahead for long spans of time. He said that it was a constant challenge to stay busy and mark time, so when he reached the point where he couldn't read or watch any more television, he'd just sit and stare. He believes that others who have spent long periods of time in the hospital will understand this experience...and the need to just make time pass when the days are long and slow. This is one reason that Torger was so responsive to Dr. Tse's requirement that he rinse his mouth with saline or peroxide every 15 minutes to prevent mouth sores...it gave him a way to break up his day into smaller chunks.

But our post-transplant experience was completely different. Neither of us can believe how quickly the time has passed. We moved into the hotel with stacks of books, magazines, movies, music, and games that we thought we'd need to make the time pass...but we hardly made a dent in the pile. Having almost daily appointments at the hospital set the parameters around which our days revolved, and when we weren't there, I was working from our room, or we were running to the grocery store or making the trek into downtown Denver to get to the bank. We had to time our activities around both Torger's medication and infusion schedule and the housekeeping staff, who needed to get in to clean and maintain the room. (I don't know why it never occurred to me before that hotels don't just provide maid service to make us comfortable...they also need to make sure their rooms aren't getting trashed! We agreed with the hotel from the beginning that they could come in three or four times a week, if not daily, to at least make sure the trash was emptied.) We celebrated Halloween, Thanksgiving, Christmas, New Year's, CSU's Bowl win, my friend Stacy's wedding, the birth of Jean and Ted's grandbaby, the November elections, and Obama's inauguration in the hotel. We didn't watch the Super Bowl there, but we could have if we'd wanted to. Our baby niece, Bea, learned to say "aunt" and "uncle" while we were there. We cooked hundreds of meals with the two-burner range and toaster oven, and I learned to never, ever again complain about the lack of counter space in my kitchen at home. We learned a lot from the experience, and now we're home...sort of. We're actually in the Hilton in Fort Collins (using some of our now vast collection of hotel rewards points) while I finish getting the house cleaned and organized. Marcy, Brandy, and Alex were up again yesterday from Denver to vacuum, hang drapes, and put furniture back where it belongs, but there's still a lot to do before Torger can stay in our house. I should be able to wrap it all up so we can sleep in our own bed tomorrow night for the first time in four months. And I'm sure, once we're there and settled in, it will seem normal again in no time at all. But I think our definition of "normal" and "time" will never be quite the same again.

Day 122--Almost Through

Tonight is our last night in the hotel...at least, in this hotel. We're moving back to Fort Collins in the morning but will need to stay in a hotel up there for a few days while I finish reassembling our house. In the last few weeks--and with a considerable amount of help from family--we successfully got the carpet pulled up, refinished the wood floor in the bedroom, pulled off the grungy wallpaper in the office, repainted the office and the bedroom, got new windows installed in both, and had the exterminators in to seek and destroy any wayward mice . We've given away our rugs and a whole bunch of books--which in our house barely made a dent, but nevertheless eliminates the one open bookshelf in the bedroom with dust-collecting potential. We now have our new, HEPA-filter vacuum, which I still have to figure out how to use, and the new blinds are ordered and should be installed next week. We also have a new couch ordered, and we'll just have to throw a sheet over the old one for a couple of months until it arrives. All of this is wonderful, but right now, we have random books and furniture all over the house and sawdust from the floor still lingering in corners and, actually, right out in the open. So we'll be tackling that tomorrow, with much help from kind-hearted folk. And speaking of kind-hearted folk, Sandy (the hotel manager) and Celeste (the sales manager) came by our hotel room to say goodbye this afternoon. They gave us each a fancy hotel bathrobe and a box of chocolates, and they also said that they'll give us the staff rate any time we want to stay here in the future. That just about guarantees we'll spend some nights back here when we have to come down for any early-morning appointments. We've actually grown really attached to the hotel staff, from Miss Jean who runs the kitchen and makes really amazing muffins to the "tiny tornado" housekeeper Angelica, to Homero the maintenance guy, to Kelvin, Alejandra, Derrick, and Aaron at the front desk. I feel like I've actually gotten to know some of them a little bit, and I'll miss seeing them every day. (Of course, I've invited all of them to a CSU basketball or volleyball game next time they decide to enjoy their "staff rates" at any of the Hilton-family hotels in Fort Collins.) When we check out in the morning, we'll have been here exactly 4 months and a day--a third of the year. Anyway, better stop typing now so I can go finish packing.

Day 117--Who Was That Masked Man?

I actually took this about a week ago after Torger's eye exam, while we were waiting for his CT scan. His eyes were dilated, so he had to wear the weird new optometrist's glasses that don't have arms but just stick right onto your face. Together with his bald head and duck-billed mask for going out in public, he had a good alien thing going.

Physical therapy went well on Friday, although Torger was amazed at how much it tired him out. They had him do 5-7 minutes on the treadmill at about 2 mph, followed by 3 minutes of cool-down. Then he did some leg and arm lifts with the giant rubber bands. He did the treadmill again at the hotel this morning (after we wiped it down carefully). He'll stick with the 5-7 minutes this week and then bump it up by 5 minutes a week. Rich, the therapist, wants him to come in one more time before we go home, and then about once a month after that. (Sorry this picture is a little blurry...I took it with my Blackberry.)

Day 115--Starting PT

Torger is finishing up his last set of appointments before we move home...he had another skin biopsy on Wednesday and will meet with an endocrinologist next week. He'll also have to have some bone density scans. But today is the exciting one because this is his first appointment with a physical therapist. As I've mentioned before, he's pretty deconditioned after the transplant and several months of fairly limited activity. The whole time he was in the hospital, he'd get himself out of bed to do leg lifts and laps around the floor, but the post-transplant fatigue is harder to fight...especially when it's too cold or windy to walk outside. (He's also supposed to avoid much sun.) He can't be in the hotel's workout room when other people besides me are in there exercising, so you can see the problem. Walking the hotel halls and carrying the clothes basket down to the laundry room is a workout these days, and he finds it hurts when he leans on one elbow for too long because there's just no muscle there. So this appointment signals the real start of getting back into a more normal level of activity.

The Love Spud

When I was grocery shopping recently, I found this potato, which Torger named The Love Spud. Since Valentine's Day is just over a week away, I wanted to share it with all of you so that you, too, might share in the Valentine's spirit. I like how the little, crooked line on the righthand side looks like its potato heart is breaking just a wee bit. I actually gave it my sister, Marcy, after I took this picture, and her 1 year old promptly took a bite out of it. Either that is a warning to all her future boyfriends, or a sign that this younger generation has no sense of romance!

Day 112--Still in the Hotel

Both my cell phone and my secure connection to my work computer seem not to be working at the moment, but at least I can update the blog! We've had a pretty hectic week trying to get things ready to move back home. Even though we have permission to leave the hotel three days from now, we'll probably be here one more week beyond this one as we try to finish up our great last-minute remodeling escapade at the house. As always with this kind of stuff, it's taking twice as long and causing twice as many headaches as originally planned, but we actually planned for that, so we're doing OK. Thanks to Alex, Brandy, Mark, Marcy, and Mom for spending the day at the house Saturday sorting through stuff, taking down blinds, and cleaning up sawdust left from refinishing the bedroom floor. I can't even express what a huge help they've been in this whole process. Torger really, really hates the fact that he can't help, but that's kind of the point of this whole thing. He was on the computer last night reading about aspergillus and brain fungus in AML patients, and everything he read started freaking him out just a little bit more. There was a whole article about how pillows are a problem, which we already knew...but somehow seeing it in writing can make it seem more daunting. We both agreed he probably shouldn't ready that stuff for awhile. He did have a really interesting dream the other night. Somehow, Rod Blagojevich was hanging around him in his dream, and Torger just couldn't shake him. At one point, Blago scalded himself with some water and dream-Torger was trying to get him to put something cool on the burn, and Blagojevich wouldn't listen but also wouldn't stop complaining about it! Then when dream-Torger would talk to other people, Blagojevich would pop up and start accusing them of talking about him. It was a pretty funny dream, actually, but Torger was just annoyed when he woke up.

Day 107--One More Week in Denver

We had a good meeting with Dr. Tse yesterday, and he gave us the official OK to move home at the end of next week. We discussed a number of potential concerns for the future, including infection, brain fungus, and the possibility that the leukemia could come back even with his new cells. But mostly, Dr. Tse said he wants Torger to remain very careful over the next three months so that he can get back as quickly as possible to leading a relatively normal life. (This is Torger, after all, so "normal" is relative.) After a few more appointments, including a meeting with an endocrinologist, some bone density tests, and another skin biopsy, Torger should be done with tests for a little while. The results from his tests last week seemed to all be positive...including the eye exam, where their primary interest was to make sure Torger was able to make enough tears. Hydration is actually a continual challenge right now. He's been having some edema (puffiness) in his ankles, and Dr. Tse chalked it up to not enough fluid and not enough exercise. So we got him doing some more walking yesterday, but drinking his required daily gallon of fluid is tougher. For the next three months, he's just got to approach "hydrating" as his job.

Day 104--Kicking Off the War

This weekend, we really launched our War Against Dust in a big way. Torger and I made our first trip back to Fort Collins on Saturday, which was actually kind of strange. By the time we eventually move home, we'll have been living away for almost a third of a year. And even though the time has zipped by, on Saturday it still felt like we'd been gone a long time. We got Torger ensconced over at Mom's house away from the activity, and then I went over to our place. Alex and Brandy came up from Denver, and together with Mom and me, we got all the furniture and junk moved out of the office and finished the actually pretty hellish job of scraping off all the old wallpaper. We got new windows ordered for the office and bedroom, to replace the original 1949 windows that not only let in a lot of cold and dust but also get moldy in wet weather. And we gave away our two big Persian rugs, which we both love but which, even after cleaning, are likely to harbor dust and cat dander. Mom found a painter who will be coming in mid-week, and later in the week, a guy will be coming in to pull out the bedroom carpet and refinish the wood floor. Our new HEPA-filtered vacuum has arrived, and boy, are we going to need it. Our house is probably as clean lately as it's ever been, but dust still accumulates in unexpected and hidden places...and we really do have a lot of books, which are big dust collectors. We are going to go up again Thursday and Saturday to coordinate some of the work and so I can get busy sorting and purging some of the excess stuff. Brandy also noticed that we really need to get rid of our accordion blinds because of the dust and the complete inability to really keep them clean. So that will be another project for next weekend. Driving back to Denver Saturday night, we both had the odd and comforting feeling of coming home as we approached the hotel. For the next two weeks anyway, it will be home.

One Milestone Reached--Still More to Go

To elaborate on my celebratory post from this morning...Torger has reached Day 100 and, despite the grim prognoses before his transplant, he's still very much alive. Hooray! Now we're gearing up for the next 100 days. Early on, we were told that if Torger made it past this first milestone, he'd have about a 50-50 chance of making it through the first year. So that's where we are now, which is much, much better than where we've been. We just have to keep working , and, as Torger's dad, Jon, said this morning, Torger will pretty much just have to resign himself for the next three months to wearing his duck-billed mask until he just about reaches...but doesn't quite cross...the point of insanity.

The milestone is a little anticlimactic, though, because it's now looking like we won't be able to move out of the hotel until about February 4 because of both the work that needs to get done on our house in Fort Collins and the appointments Torger has to have at the hospital before they let him leave Denver. Dr. Tse is actually out of town this week, but in his absence he has scheduled Torger for a long list of tests and exams that will determine whether we can go home in the near future. We just got back from the dental clinic, where he had a detailed dental exam and X-rays. (While I was waiting, I went into the little computer resource room they have set up for patients and visitors in the waiting area, hoping to do some work or at least update the blog. Instead, I had to laugh when I saw the sign in the room warning that the bank of computers is only to be used to access dental-related websites. No WONDER I was the only person in there! I can understand restricting the use of one or two computers, since it's for patients in a dental clinic after all. But six?? It just seems like they're anticipating a whole lot more interest in dental-related websites than is probably realistic. And I'm a fan of teeth!)

Tomorrow, we've got the next round of exams, including a CT scan, eye exam, pulmonary function test, and the usual labwork. We're still trying to schedule him for another set of skin biopsies, which Torger is dreading. But so far, all the tests he's taken look really good, and Dr. Tse has even reduced Torger's fluid infusion so now we'll have two days off a week from "doing the drip" at home. The reduction means Torger will be required to up his fluid intake to at least a gallon a day, but it's worth it to get a little bit of freedom from the IV. This is the kind of milestone that is really meaningful for us right now.

DAY 100!

Yay!!!

Day 94--MAD DOCTOR CREATES BALD ZOMBIES!

Actually, this is a shot of our wonderful Dr. Tse, checking Torger out at the Bone Marrow Infusion Clinic today. We were in there for Torger's blood draw, and he popped by. In addition to some poking and prodding, he took time to answer some of Torger's questions about brain fungus and other scary subjects. He said that recovery and avoiding problems is as much about logic and common sense as it is about medical miracles. We just have to continue doing what makes sense, based on all we know about this disease. He also told us that the molecular analysis of Torger's bone marrow showed that just before the transplant, even after all the chemo, there were still trace leukemia cells visible. But post-transplant, there are none. We didn't really need reassurance that we'd made the right choice in going forward with the transplant, but this is still really good to know. The fellow sitting in the curtain next to us, "Mike from Cleveland," told us he'd just bought a new furnace filter system for his house, for the exact same reason Torger and I are yanking out carpet. We're all trying to do what we can.

Day 93--Preparing to Live Dust-Free

Torger took the news about brain fungus pretty hard yesterday. I actually haven't seen him that upset since Dr. Tse told him he had a 70% chance of dying in the first 100 days after transplant. On both occasions, he went into the appointment feeling happy and confident and left looking like he'd been punched in the stomach. We both really appreciate that Dr. Tse is honest and straightforward with us; it's the reality of the news that is a little overwhelming at first. We have a rhythm...we take the shock, let ourselves be afraid, then set the fear aside and deal with what is. But last night, he was pretty afraid. This one is particularly hard to grapple with because we're about to leave our little bubble-world and move back home to the real world, but we actually won't be able to live in the real world for some time yet. Through most of his recovery, Torger has felt like he had some degree of control...eat the right foods, comply with doctor's orders, avoid sneezing and coughing people, take all the medications, and it will improve your changes of avoiding infection. The aspergillus risk is tougher because it's just out there in the air and on our shoes and clothes and in our hair. And Torger--with all his books, music, objets d'art, collections of odd little toys--lives in a world that collects dust. All we can do is work hard to reduce the risk. Last night, we talked at some length about how we're going to manage this next phase, and this morning, we're going to map out a plan of action and a budget. We're just going to have to bite the bullet and make some changes in our home that we'd been putting off. For the next few months, Torger will have to continue to stay out of places with plants and pets. We're going to seal off his old records in plastic and he won't work in his studio, with its beloved dust-collecting stuff, until he's off immunosuppressants. Mom and Rich have been a big help already dealing with the mice that moved into our house while we were away, and we've had a woman cleaning the house while we've been gone to keep the dust under control. Now Mom and I can deal with some additional painting and cleaning and purging. I'm trying to convince myself it'll be fun, but my big challenge is to convince Torger to stay upbeat and forward-looking. That's our only viable option.

While You're Thinking About Brain Fungus...

...here's a joke from our friend Nik to lighten things up: “What do you call a mushroom that buys everyone drinks? A fungi to be with.”

Also today, Torger observed while looking around the Cancer Center waiting room: "A whole lot of us guys here look like Joe the Plumber." It was true!

Day 92--Brain fungus

We had our weekly appointment with Dr. Tse today, who told us Torger's biopsy from last week looked good and his infection-fighting ability is getting stronger. Over the next week, we'll have a whole slew of appointments with different specialists in anticipation of being allowed to move home after Day 100. But when we get home, we have a whole new reason to be cautious and worried: brain fungus. Brain infection from aspergillus is an increasing risk for transplant patients, and apparently two CU Cancer Center patients have died from it just recently. Unfortunately, aspergillus spores are hard to avoid. They're present in dirt and dust and floating around in the air. We know a lot of the things Torger must continue to avoid, like coming in contact with dirt or live plants, construction sites, dust, and being in rooms that are being dusted and vacuumed. But now we've started worrying about things like the musty smell that we get from the crawl space at times when the air conditioner comes on...or some of Torger's old collectible, record albums that may have a patch of mildew in places on their covers from when we had a flood at our old house. We knew we needed to replace the carpet in our bedroom because it's old and dusty and covered with cat dander (not to mention other, aromatic reminders of our poor, late kitty). But now it's urgent, as is taking down the old wallpaper in our computer room. Ai yi yi. Suddenly, going home doesn't sound quite as fun for either of us. Torger is actually pretty concerned about it because he was feeling that we had things pretty well under control. But as usual, Dr. Tse finds a way to keep us on our toes and paying attention to all the things we have to do to keep Torger alive. We also found out today about another risk we hadn't foreseen: With his new blood, Torger is no longer vaccinated against anything. Measles, mumps, rubella, tetanus...all the diseases he hasn't worried about since childhood are now real risks. We are under strict orders to avoid contact with any unvaccinated people until Torger can get re-vaccinated at one-year post transplant. I'm starting to suspect that we're going to be looking back at our 100 days in the hotel as the easy part of this whole process...re-entering the real world is starting to seem a little daunting.

Day 9-0: Ten More to Go!!

Dr. Tse is recommending this book to all of his patients (see intriguing reviews at http://www.jeromegroopman.com/how-doctors-think.html). From what he's told us, it sounds like it could be an important resource for any patient or family dealing with long-term or traumatic medical challenges.

Day 86--Up to the Same Old Tricks

Torger had another biopsy yesterday, but Dr. Tse didn't bother to check his bone marrow because he's now 100% engrafted. We'll get the results in another week, but right now we're feeling quite positive about the possibility of being able to go home in a couple of weeks. Torger's tacrolimus levels have stabilized, but despite my worrying, Dr. Tse isn't concerned about them at this point anyway because he wants to start gradually tapering down Torger's immunosuppressant intake. We went down to a lesser dosage (.8 mg) on January 1. This new dosage doesn't come in pill form, so Torger has to swallow a syringe full of it twice a day...which burns his tongue. (It's amazing how easy it is, going through this life-saving course of treatment, to focus on the little, irritating parts that are so noticeable on a day-to-day basis.) At the BIC (Bone Marrow Infusion Center) the other day, we heard a woman trying to explain to her very irritated doctor why she hadn't been taking her medications, which had led to a relapse. At first we were just baffled as to why anyone undergoing treatment for a serious cancer would skip their medications. But then we remembered that some medications do have side effects that make you feel bad. Someone dealing with the fatigue and "chemo brain" of recovery could easily have a hard time even keeping all the pills straight, much less mustering up the will to take something that doesn't immediately feel like it's helping. This is just one of more of the reasons that patients are required to have a 24-hour caregiver...it's so much easier to keep on track when someone is there to help manage the details. Now that we're almost through our 100 days, it's all starting to make sense!

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.