life in a box

Almost July and Doing Great

2010-06-30T13:28:00.003-06:00

Torger's comment this morning: "Only the good die young, and I'm not that good."

While that point's debatable, he's definitely still alive! A couple of months ago we marked two years since his diagnosis, and this week we're looking forward to another milestone...a visit from his dad, Jon. Jon has stayed in close contact throughout Torger's illness and been a big support for both of us. He came out for a visit while Torger was going through chemo, but given his heavy international travel schedule, we (and he) have been reluctant to have him visit until Torger was at least partially vaccinated. So we're really looking forward to seeing him now. Torger looks so much better than when he was last here two summers ago. Then, Torger was pale and really thin. Now he's kind of getting a gut! He hates it. This whole past year his doctors were on him to gain weight...eat butter, ice cream, etc. He didn't gain and didn't gain, and then it all came back at once! I think he looks great, but he liked being skinny. We've both been trying to get out and exercise more, which is also important to start rebuilding his stamina.

We're heading out to get T's blood drawn this afternoon, which he only has to do once a month now. I still watch his cell counts closely, even though at this point tiny fluctuations in the numbers probably don't mean a lot. But as he transitions to fewer and fewer doctors' visits, we've got to be paying even closer attention ourselves for any signs of a relapse. So far, there have been none, but until he's gotten a few years down the road, we can't really relax.

Happy Easter! And Wow. This Post is Way Overdue.

2010-04-04T22:37:00.003-06:00

I apologize for my delinquency in posting updates...but in this case, no news really is good news. Torger's continuing to do really well in his recovery. He's now had two rounds of vaccinations, so he's about at the same point as a four-month old infant in terms of building up his immunities. This has made us a little more comfortable being out in crowds on occasion, but we still have to be careful. His stamina is not what it used to be, and things like having to stand in line for some time can really knock him flat. His next round of vaccines won't happen until his next transplant anniversary in the fall, so for now, we're kind of in a holding pattern. He's down to one daily pill, his anti-viral...but that didn't prevent him from picking up a nasty cold bug in February. That was a little bit scary. We both had it, and it was a mean one that gave us both bronchitis. Our doctor said it was turning into bronchitis or pneumonia in a lot of cases, so we were both very worried about Torger getting pneumonia. It was the first really big test of his new immune system, and fighting it really taxed his system. But he made it through! So we continue to feel encouraged...and we're looking forward to the end of this LONG winter. There was snow in our yard non-stop from November to mid-March! But things are warming up, and Torger's able to get outside a little more, although he still has to limit his sun exposure. He still deals with occasional bouts of GVHD on his skin, mostly around his eyes, and sun exposure can make that worse. So he's being careful, but getting out to walk or ride his bike whenever he can.

That's it for now. I'll post again (in a more timely fashion) as soon as there's anything new to report. In the meantime, Happy Easter!

Our Story Continues...With Photos!

2009-12-27T18:15:00.014-07:00

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

2009-10-18T10:19:00.002-06:00

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!!!

2009-10-14T18:52:00.007-06:00

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

2009-09-22T16:34:00.003-06:00

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

2009-09-21T17:59:00.004-06:00

"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

2009-08-09T17:06:00.003-06:00

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

2009-07-17T17:39:00.002-06:00

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?

2009-07-16T08:48:00.002-06:00

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

2009-07-03T13:26:00.004-06:00

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

2009-06-19T09:26:00.005-06:00

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.

2009-06-12T15:00:00.004-06:00

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

2009-05-30T18:32:00.002-06:00

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

2009-05-26T16:08:00.012-06:00

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!

2009-05-26T14:31:00.004-06:00

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

2009-05-24T18:01:00.003-06:00

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

2009-05-18T17:40:00.002-06:00

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!

2009-05-14T18:32:00.003-06:00

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!

2009-05-13T08:28:00.006-06:00

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!

2009-04-20T11:19:00.002-06:00

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?

2009-04-17T17:53:00.002-06:00

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?

2009-04-07T17:53:00.002-06:00

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

2009-04-06T17:57:00.002-06:00

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

2009-03-09T17:57:00.002-06:00

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!!

2009-03-07T10:24:00.003-07:00

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

2009-03-04T17:42:00.002-07:00

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

2009-02-22T17:23:00.004-07:00

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

2009-02-15T23:12:00.004-07:00

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

2009-02-13T21:14:00.002-07:00

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?

2009-02-08T18:24:00.006-07:00

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

2009-02-06T07:14:00.003-07:00

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

2009-02-04T17:44:00.003-07:00

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

2009-02-03T09:37:00.003-07:00

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

2009-01-29T06:38:00.002-07:00

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

2009-01-26T07:52:00.002-07:00

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

2009-01-22T15:20:00.003-07:00

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!

2009-01-22T08:49:00.001-07:00

Yay!!!

Day 94--MAD DOCTOR CREATES BALD ZOMBIES!

2009-01-16T19:14:00.005-07:00

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

2009-01-15T08:50:00.002-07:00

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...

2009-01-14T18:18:00.002-07:00

...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

2009-01-14T17:38:00.003-07:00

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!!

2009-01-12T09:12:00.002-07:00

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

2009-01-08T21:15:00.003-07:00

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

2009-01-03T22:41:00.003-07:00

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

2009-01-03T09:33:00.007-07:00

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

Day 79--2009

2009-01-01T23:08:00.002-07:00

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

Day 77--I Got A Grip

2008-12-30T14:19:00.003-07:00

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

Day 77

2008-12-30T09:43:00.002-07:00

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

Day 76 Again

2008-12-29T16:38:00.002-07:00

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

Day 76--No Quick Fix

2008-12-29T10:33:00.001-07:00

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

Day 73--Happy Boxing Day!

2008-12-26T13:08:00.004-07:00

Also known as St. Stephen's Day, Boxing Day is a holiday celebrated (I think...don't quote me on this) in England, Canada, and Australia, and traditionally considered a day to offer gifts to those less fortunate than you. (Whereas, Christmas is traditionally a day when we give gifts to friends and loved ones.) I have no idea why it's called Boxing Day, but since I didn't get around to posting on Christmas, I felt like I needed to give a little nod to Boxing Day. If you prefer, it's also Kwanzaa, according to our calendar, so you can take your pick. The holiday spirit abounds!

We had about as wonderful a Christmas as we could have imagined under the circumstances, particularly since neither one of us knew last summer whether we'd get to have another Christmas together. This is the tiny fake tree we bought at Target...it looks much bigger in the picture than it actually is. In reality, it looks like just the top of a real Christmas tree if it had been lopped off and put in a pot. But it's perfect for our hotel room. I can honestly say that I've never appreciated Christmas cards more than I have this year. And we had some wonderful gifts from friends and family, including a Liberace Christmas record (with a companion copy burned onto a CD) from Carolyn and Garry. (Not sure how to describe our relationship with C&G..."in-law in-laws"? They're our brother-in-law Mark's folks, so they're family, but also good friends.) Anyway, it turns out, miraculously, that Torger had just been regretting earlier in the week that he didn't own any Liberace Christmas music. The round, red package on the left in the picture was from the hotel staff, and guess what it was? A blanket to replace the one that got stolen from our car! We thought that was really nice. And back in the fall, when we'd bought a few books and videos to enjoy during the 100 days, Torger had sneakily stashed some of them away so I forgot all about them. And they show'd up under the tree from Santa! We had a good Christmas Eve visit from Alex and Brandy, and Mom and Rich came by for a few minutes in the afternoon on Christmas Day to have some hot apple cider and wish us a Merry Christmas. They gave us our copy of the latest family calendar, which they assemble each year with pictures from the year before. Torger features prominently in this year's calendar, and we were both kind of taken aback by one picture of him taken in the late summer, when he looked so much sicker than he does now. (At the time, we thought he looked pretty good.) Later, I made a little roast for the two of us for dinner, with biscuits and mashed potatoes and veggies. Then we went over to the 11th floor at the hospital to drop off some treats for the nurses...peanut butter cookies and some toffee...and a Yachtzee game for the floor rec room, since we wound up with a spare. We saw our favorite CNA Brian, who was wearing an elf hat and told us he'd managed to pass his English class. Hooray! (I wrote about our attempts to help him with this class in one of my earlier posts.) Torger wished the whole staff a Merry Christmas, and they seemed really happy to see him, especially looking so well. We also left a little care package for a couple we've met at the hospital. The husband was diagnosed with multiple myeloma just 10 days after Torger, so we've gotten to know them as we've all been cycling through the BMT floor, lab appointments, and clinic days. Unfortunately, treatment for his illness requires not one but TWO stem cell transplants, and he went back in for his second just a couple of weeks ago. Torger and I just can't imagine going through that agonizing process twice in such a short period. It's another reminder of how lucky we've been through this whole process.

Then we came home, listened to a little Liberace, watched a DVD and went to bed. All in all, a great holiday.

Day 7-0--Only 30 More to Go

2008-12-23T17:29:00.002-07:00

Dr. Tse called last night to say that Torger's tacrolimus levels were a little high, even though we've been gradually reducing his dosage. (Tacrolimus is the immunosuppressant.) So we got up this morning and went over to the BIC (BMT Infusion Clinic...our regular hangout) for another test. One of the other doctors is watching Torger's labs while Dr. Tse is in Europe, so we don't get to slack off. That temptation to slack is one of our biggest challenges right now, since Torger's been doing so well. Here we are in Denver, where some of our favorite people live, and where there's lots to do and plenty of tempting restaurants. But Torger tires out quickly, has to wear a mask in public, and his digestion is really sensitive, so things like shopping and museums and eating out aren't any fun for him...they actually make him feel bad. We have gotten the OK to get an occasional piece of pizza out, since it's cooked at such high temperatures. But after a couple of attempts, we haven't even been in a hurry to do that again because all the medicines have interfered with his sense of taste, so pizza seems slimy to him. And the one time we went out to look at a bookstore...when it was slow, during the middle of the day, with Torger fully masked...I got so paranoid about all the people coughing and sneezing around us that we cut it short and went home. This isn't a vacation, even though we're staying in a hotel. It's work. And every time we start to lose focus, hearing one sneeze is about the only reminder we need as to why we have to stay so isolated. So for now, a trip over to the nearby Walgreen's to buy bottled water is a big outing for us. It has made us both aware of how much frantic running around we do in our normal lives. It's actually kind of nice to have a good reason to sit still.

Day 69--No Smell of Pine

2008-12-22T18:32:00.003-07:00

OK, that's one of my worst rhymes yet. But it applies...we got a 3-foot tall fake Christmas tree for our hotel room, and it doesn't smell like pine. But it looks very cute. (I'm going to try and take a picture of it to post on here tomorrow, so we'll see how that turns out.) Today, Torger had a CT scan and labwork, then we had our last appointment with Dr. Tse for two weeks because he's going to Europe for the holidays. He squeezed us in for an appointment today, then we'll skip next week and see him the following. We'll still have to come in every other day for labwork, but it will be nice not to have the clinic appointments, which tend to stretch into hours because of all the other tests that get scheduled around those sessions. And the latest good news is in: The recent bone marrow biopsy results came back and Torger's cells are now 98-100% donor cells, which is outstanding. And there are no leukemia cells showing up, which is even better.

Go Rams!

2008-12-20T23:03:00.001-07:00

And "Yay!" for CSU for winning the New Mexico Bowl today!

Day 67--Yachtzee!

2008-12-20T22:33:00.002-07:00

We're just hanging out tonight playing Yachtzee and listening to "Excursions" on KRFC (the radio show that Torger normally does with his pal Randy). Torger has really been missing the chance to do their annual Christmas show, but Randy's been doing a great job flying solo. So far he's played some Julie Andrews, Claudine Longet, James Brown, and Flaming Lips!

We're having a restful day after a pretty hectic week. On Wednesday, Torger had to have four separate biopsies so they could check different parts of his body for levels of GVHD: back, arm, inner thigh, and face. He was pretty miserable for the rest of the night after getting four shots and then having four chunks of skin cut out. But the results came back last night and the doctors are happy with his GVHD levels, so that was good news. We did learn another interesting tidbit this week: Since the transplant, Torger's developed a couple of deep, parallel ridges on each of his fingernails. One of our regular nurses, Erin, told us that's because fingernails often fall out after transplant, but apparently Torger's nails resisted it. Yikes! We're kind of glad we didn't know that one at the time.

Day 61 And Still Not Done

2008-12-14T18:15:00.003-07:00

This has been a pretty uneventful weekend. Torger just got off the phone with his dad and is waiting for the television event of the season on the SciFi Channel: "Sharks in Venice." He is, of course, disgusted that the sharks that will apparently be the villains of the movie are great whites--and not even a kind of shark that could possibly, under some far-fetched circumstance, ever stand a chance of winding up in the Venice canals. But he plans to watch it anyway because, well, it's a killer shark movie. Set in Venice. Meanwhile, I'm making dinner (like the sharks, we're also having Italian ). I've been trying to get Christmas cards written in between going through bills and trying to keep up on the filing. My friend Jean advised me early on in Torger's treatment to start a file to keep bills and insurance statements coordinated, and keeping up with that file has been both time-consuming and essential. There are so many bills for so many different providers that it becomes really hard to keep them straight, and it would be really easy to pay something twice without this system. There's one unit of the hospital that has twice now neglected to bill our insurance and just sent us a bill for the total amount due, which I might have paid if I weren't making a point of matching all these things up. So while Torger is watching sharks, I think I'm going to enjoy a quiet evening collating.

Day 58--Just Need to Wait

2008-12-11T18:45:00.004-07:00

Torger went in on Wednesday for his Day 57 bone marrow biopsy. We won't know the results until next week, but Dr. Tse did warn us that we have to be on the lookout now for pneumonia and fungal infections, which tend to hit hard after Day 50. Just when we thought we were almost in the clear! But we'll just wait it out. We're very much in waiting mode now as we get through the second half of the hundred days.

Torger hates the biopsies (with good reason--they hurt), but they're the only tool we have to know if any leukemia cells are coming back. Otherwise, Dr. Tse is very happy with how Torger's doing. He continues to have just the right amount of GVHD showing up on his skin, and his kidney and liver function are doing much better. We got a little bit of a laugh when Dr. Tse told us that the BMT team is "all very fond" of Torger. That's such a nice thing for a doctor to say. (Of course, Dr. Tse is also the one who, in his medical notes outlining the initial transplant protocol, described Torger as a "pleasant 52-year-old white male.") We chuckle because of Torger's well-established reputation as my Old Man Grumpus, but the truth is, he really has been a good sport through this whole thing. Of course, he's back to being grumpy today because he's sore from the hole they drilled in his hip to get the marrow out. Having watched the biopsy, I think he's more than entitled.

Day 56--Everything's Fixed

2008-12-09T17:42:00.002-07:00

The car's all fixed now...new window, new battery, new keys, even a new pair of wiper blades. It's like Christmas for our Honda. We're doing better, too, now that we've had some time to regain our perspective. We're also pleased that the Denver police have assigned a detective to the case because we were able to get the video, so maybe they'll actually catch the guys with their car trunk full of other people's blankets, mittens, and owners' manuals. Ha! (Sandy, the hotel manager, said she thinks these kinds of car break-ins tend to pick up around the Christmas season because this is the way the thieves go shopping for their presents.) Our 5-year-old nephew, Will, assured me that they don't have robbers and burglars in his neighborhood because they're not allowed there. I think Will's on to something. We just need to start posting "No robbers allowed" signs.

Otherwise, life is back to "normal." Dr. Tse called to congratulate us on doing a good job of keeping Torger hydrated this past week. I think we do deserve congratulations on this, since it requires a little bit of work. In addition to his daily fluid infusion, he has to try and drink up to two liters of water or non-caffeinated beverages every day--but no tap water and no ice made from tap water. We've found an unsweetened, decaffeinated, bottled green tea with no preservatives that he likes, and it sounds like it's working for his liver and kidneys. Yay!

Torger's dad, Jon, called on Saturday, and he offered an interesting observation. While he's counting his own life in terms of years, Torger is counting his in terms of days. It's a good reminder to appreciate every one of those days and not let the creeps of the world spoil any of them for us. The creeps in the world are WAY out-numbered by the good guys.

Still More Day 54

2008-12-07T21:58:00.002-07:00

Sandy the hotel manager and her assistant, Jason, were able to isolate the section of the security tapes where the guys broke into our car, and they called me to down to the office to show me. You can see a dark gray Pathfinder pull up to a red sportscar parked three slots down from us, and a young guy in a white sportscoat and jeans, with dark hair pulled back in a ponytail, hops out of the back passenger side seat. He looks in the other two cars in the lot, then meanders over to ours and glances in the window. Then he opens the back door of the Pathfinder and leans in, as if he's talking to the other people in the car--and the tape glitched out right at that second, so unfortunately, you don't see them break the window. It comes back about two minutes later, and you can see a different guy, who had been sitting in the passenger seat in the front of the Pathfinder, standing at the rear of my car. He's got a green bag in his hand, and at first it looked like he was sliding backward out from under the rear of my car. It was very weird. But we think what we're seeing him is him shutting the trunk. There are papers scattered around my car at that point almost exactly where I found them this morning--many of them sheets from notepads we've gotten from Dan Richmond, our insurance agent. (We always keep a Dan Richmond pad in the glove compartment.) Then he hustles the green bag over to the Pathfinder and hops in, and they all drive away. We couldn't see their license plate, but we think the police might be able to. The other cameras around the building caught them pulling into the parking lot and driving out, but lucky us, they only stop at our car. It all happened about 9:30 last night. 9:30!! In addition to just being pissed off about the whole thing, I'm annoyed at what they took, besides the papers from the glove box...it was all stuff that had absolutely no pawn value and is just going to wind up in a dumpster somewhere, but it's stuff we loved. The green suede gloves I've had for 10 years, the fingerless mittens my sister knitted for me last winter, and from the trunk, they took the green velour blanket that Torger's mom gave us as a wedding gift 16 years ago. It was a worn out old blanket, but really soft and Torger's favorite...he took it with him when he went in for the transplant and had it with him all through his stay in the hospital. We'd only left it in the trunk because we didn't really need it in the hotel, and last night when I unloaded groceries from the car I saw it there and thought, "I really should bring that in and wash it." I never imagined anyone would steal an old blanket. We just picture him going home to Mrs. Thief and saying, "Here honey, here's the blanket you've always wanted." She'd be totally bummed. But we'll miss it, and I think that's why this whole thing is so hard for me to wrap my brain around. It all just seems so stupid, and it makes me sad.

More on 54

2008-12-07T17:01:00.002-07:00

I am, once again, very grateful for Torger's ability to cheer me up and help me look on the positive side. He had the idea to go out and get a "club" for the steering wheel, which we hope will at least prevent our car from getting stolen tonight if we park under a bright light right outside the hotel entrance. We taped up the window and went over to a nearby Auto Zone for the club. Then, when we went back out to the car, our battery was dead. We'd been having trouble with the starter, but now apparently our battery is about gone, too. But really, what better place to have your battery conk out than in the parking lot of an auto parts store? The Auto Zone guys jumped it for us and advised us to drive around for a little while to make sure it was charged up. So we took a little drive east on Colfax to Watkins, Colorado, which is really just outside Aurora but seems farther. By the time we got back to the hotel, none of it seemed so bad anymore. I'm now busy rearranging tomorrow's appointments with the hospital (Torger) and the dentist (me) so that we can get in and get the car fixed first thing in the morning. Torger says to write that now he's whining for his dinner, but really he gets the non-whiner award for today.

Day 54--Heavy Sigh

2008-12-07T14:38:00.002-07:00

So, our car got broken into last night in the hotel parking lot, leaving us with a smashed rear window on the driver's side and a backseat full of broken glass. We didn't have anything of huge value in the car (apparently, they didn't want our bags of recycling), but the thief stole all the contents of our glove compartment, including, ironically, my gloves. Unfortunately, in with all the papers for our car--which I'm sure had all the information someone needs to steal my identity--was a valet key we've never used and had totally forgotten about. So now we not only have to replace the window but we also get to have the whole car re-keyed. And no one can do any of it on Sunday, so we're not sure what we're going to do tonight. The Denver police actually came by to take the report in person because we think the break-in may have been caught on the hotel's security cameras, which probably won't help us but may help them find the people responsible and prevent future break-ins. I'm just feeling violated and overwhelmed and angry right now. What's wrong with people? I know, I know...it happens at hotels and it could have been much worse. But it's just one more thing we don't really need right now.

Day 53 in the Land of the Free

2008-12-06T12:46:00.002-07:00

Looking back years from now on our post-transplant life in the hotel, it will probably seem surreal that we were here, in our little bubble, during a time of such historic turmoil and transition. We chatted about the build-up to the election with friendly strangers in the hotel lobby or fellow patients on the 11th floor. We celebrated the election of our nation's first African American president with the kids who work the weekday nightshift at the front desk, Kelvin and Chris. We've watched the economy unravel on TV and online, only occasionally taking an anxious peek at our own retirement account (also online). This week, we've once again relied on the Internet as we've helplessly and angrily followed the announcement by Scripps that they intend to sell the oldest newspaper in Colorado, The Rocky Mountain News, and that if they can't find a buyer by sometime in January they're going to shut it down...sounding yet another death toll for the once-great tradition of the two-newspaper town. I know this hits me harder because I'm from a newspaper family and because I'm worried about my brother, Alex, who's among the many hard-working Rocky staffers who may soon be looking for work. For me, the Rocky--that good old tabloid format you can hold in one hand on the bus and the hurried smell of raw ink and cheap paper--is like family. It's the memory of great mornings sitting at Winchell's donuts with Dad when he'd let us have a donut and 7-Up for breakfast while he had his coffee and cigarette and we all read the funnies, which were really funny back then. It's the last gasp of the great newspaper battles that I took very seriously when I was little, truly believing that a Sun-Times family was in some small way just a little bit superior to a Tribune family. The demise of the Rocky isn't the war in Iraq. It's not even page 10 news in most parts of the world. It's just one more hurt in a long list of hurts created by an economy that for too long has benefitted greed and opportunism. And it's not like I'd feel any differently or be doing anything differently if Torger and I weren't living here in the hotel through it all. We wouldn't be taking to the streets in protest. But we would be talking about it with people we know, feeling somehow more engaged and connected with our own little community. Even with e-mail and letters and phone calls, there's a sense of separateness that characterizes our lives right now that sometimes is tough, even while at other times it can be almost comforting. We both felt it during the snow this week, when for the first time, we just really missed our house and being home. Even with friends keeping an eye on things, we worry about the snow getting shoveled and the gutters piling up with leaves and how our neighbors are doing and whether Mom and Rich are having trouble on the icy roads. I've had a cracked tooth that's been pretty painful, and even with a referral to a good Denver dentist, I found myself really, really..almost unreasonably...missing my own dentist in my own hometown. Living in a hotel is fun, in its way, and we're here because this is where we have to be now, at this time in our lives. And we like being together. But it's clear that by the end of our 100 days, we'll be more than ready to move out of this bubble and be back in the world.

Day 51--Huh?

2008-12-04T09:28:00.002-07:00

Torger has been having very vivid dreams lately, although not as scary as they were when his Tacrolimus levels were too high. Last night, he dreamed that the Brady Bunch took him to Colonial Williamsburg, which had turned into a cult of people who read from right to left.

Day 50--The Halfway Point

2008-12-03T21:29:00.002-07:00

We are now at the halfway point in our 100 days. Today, we had our weekly appointment with Dr. Tse, who officially declared Torger "boring" because of how well he's doing. He's got just the right amount of graft versus host disease, all his cell counts are heading in the right direction, and we've seen no negative complications. "Boring" is a great thing at this point in Torger's recovery.

Day 49--No Reason to Whine

2008-12-02T08:57:00.003-07:00

Tomorrow will mark the official halfway point in Torger's first 100 days post-transplant. It's still hard to believe things have gone so smoothly this far...as yet, no infections, no bad GVHD, not even a need for any urgent transfusions. Really, at this point, we have absolutely no reason to whine. Next week, on Day 57, Dr. Tse will do another bone marrow biopsy to check for signs of leukemia and to see how well the cell engraftment is progressing. At that point, he's said he'll consider letting us reduce Torger's lab visits to twice a week, but only if he's comfortable with the results. We're really hoping this happens because right now the time we have to spend in the lab every other day feels like our greatest health risk...it's the time of year when everyone's coughing and everyone is fighting colds or the flu. Torger gets his blood drawn at the Bone Marrow Transplant Infusion Center (lovingly known as The BIC), which is a special, smaller infusion center specifically for BMT patients who are severely immune-compromised. That keeps Torger away from the larger Infusion Center, which serves a much wider range of patients with a wider range of maladies and more bountiful selection of germs. But even BMT patients, caregivers, and nurses still get colds, and yesterday it felt like we were surrounded by wheezing, rattling coughs, and juicy sneezes. We wouldn't be so paranoid except that we're usually there for a pretty long time...they draw the blood and then we sit and wait until the results come back from the lab before they'll release us (in case Torger's counts are off or he needs a transfusion). The BIC nurses are also the ones who change the dressing on his Hickman catheter, arrange for his magnesium delivery to the hotel, and tend to other regular routine business involved with his care. So it's never just a "pop in and get out" type of visit. Yesterday, Torger wore his mask for the entire time we were there, to try and keep the germs away. I didn't have a mask--although I'm going to bring one in the future--so I just kept wiping myself down with Purell. Neither one of us can afford to get sick right now. Even with all the antiviral medication Torger is taking, he's still at huge risk of infection, and pneumonia can be a very common--and lethal--complication after a transplant. Dr. Tse has said he wants to keep us out of the hospital as much as possible for this very reason, which is why I now give Torger his fluid and magnesium infusions at home. But for now, we still have to do our every-other-day visits to The BIC...so I guess I'm whining about that a little after all.

Day 45--Thanksgiving and Beyond, Plus a Little Holiday Mush

2008-11-28T22:46:00.006-07:00

I had every intention of posting to the blog on Thanksgiving, but the time escaped me as I worked on making our little feast. Here's the secret to making a turkey in a toaster oven: buy a boneless turkey breast, prep it the way you way you normally would for roasting (herbs, butter, etc.), then smash it down as flat as you can to fit it into the oven. It worked! We actually had a lovely dinner, with our flattened turkey, mashed potatoes, cranberry sauce, stuffing, and green beans...and I am just ridiculously proud of myself for making it work. We took pictures to post on the blog, but it was after dark and the lighting wasn't good, and somehow, everything in the photos looked like big bowls of glop. But I swear it all looked quite appetizing in real life. We both ate our fill and were very thankful to be celebrating here in the hotel together...when just a few months ago we honestly didn't know if Torger would make it this far. We feel very lucky. Everything continues to be going well, and he seems to be getting a little stronger every day.

Now I'm going to get mushy, so if that sort of thing bugs you, you can quit reading here. Since Torger's diagnosis in May, we've been fortunate to have incredible support from our friends and family...not all of whom we've thanked appropriately yet. I'm still working on that, but we've been particularly helped by the experiences of several of our friends who have been through cancer themselves. I wish that none of them had reason to have the wisdom they do, because it came at a very high price. But Torger and I have been educated, soothed, and comforted by hearing about their experiences and being better prepared for what to expect as we've moved forward. So today, we want to offer a special thanks to Teresa, who even flew out to Colorado in September to pull weeds with me and share chemo tales with Torger; Judy (who makes a great chicken soup); Deb; Barb; Stacy; Paul; Anne; all the 11th floor volunteers, especially Gail; and the memory of Margaret Thompson, who reminds us that living--and living well--with cancer is very possible, because she did it for a lot of years. We're grateful for Jim and Donna Reidhead, who completed Jim's 100 days post-transplant just shortly before Torger's procedure, and whose blog has been a really important learning tool for us all along the way. And especially our friends Jean and Ted, who have shown us how possible it is to live with grace, humor, and hope, even when there seem to be far more reasons to be angry and depressed instead. More than anything (and believe me, there's been a lot that we've learned from these two...not the least of which is to up your health insurance once one of you turns 50), Jean and Ted have set the gold standard for what it means to stick together as a team and go forward with no regrets. We can never really pay them back, but we also know that Torger getting through this is the only payback they want. And we're hopeful that's one we'll be able to deliver.

It just started snowing...the first really big, fluffy snow this fall. It's nice to be here in our hotel room, feeling safe, and knowing we don't have to get up to go to the hospital in the morning. Dr. Tse is in Ohio with his family, and Torger gets the weekend off.

The Green Revolution

2008-11-23T21:41:00.002-07:00

Just as an aside, I wanted to comment on one of the weirdest challenges we've faced living in a hotel: recycling. Our Homewood Suites is a nice place, but it doesn't have any kind of system for recycling. Now remember, Torger is only allowed to have bottled water--nothing from the tap--and so with that, and the enormous amount of plastics we go through because of his medications and infusions, we've basically become our own little Superfund site. We've been dutifully separating out our recyclables every day, and I think we've finally trained the household staff not to just throw out our recyclables when they clean the room. Once we've got a full grocery sack or boxful, we stick it in the bedroom closet or the trunk of our car. My sister Marcy and her husband, Mark, have been wonderful about taking a load of recycling with them every time they drop off another batch of bottled water (which they pick up for us at Costco). But it continues to mount. I'm actually just posting this as a warning that anyone who stops by the hotel to visit from now on might just get a bag of mixed recyclables to take home as a souvenir.

The Big 4-0: Way To Go!

2008-11-23T11:22:00.005-07:00

It's day 40, and as Fujiyamamama noted in her recent blog comment, we're now more than a third of our way through our "life in a box." For me, the time has zipped by, but less so for Torger. I've actually been really enjoying being holed up here with my darling husband, but he's starting to go a little stir crazy. The difference is that I'm actually still working, e-mailing and talking on the phone to the office and trying to get in a full eight hours or more from our room as often as I can. I also have to pay attention to all his medical needs and make sure he gets his medicines at the right times. And since he has to avoid any potential sources of bacteria--which includes uncooked food, dirty dishes, and dirty clothes--I'm also in charge of all the cooking, clean-up, and laundry, which are actually welcome little tasks that give some rhythm and structure to my day. He, on the other hand, is having to create his own rhythm around things that involve receiving more than doing: eating, taking his medications, getting his infusions, going to the hospital for his appointments. It's frustrating for Torger, as someone who always has things he wants to do and has never been one to shirk his share of the household stuff. He doesn't have the energy to do art, but too many days spent reading and watching videos has already gotten old. He's feeling better and wants to get busy, but there's nothing for him to really get busy doing. He would so much rather be home cleaning out the gutters. But the truth is, he still doesn't have any stamina. He just has to wait it out while his immune system rebuilds. Before his transplant, we scouted a bunch of used CD stores, and he picked up a bunch of cheap disks. Now he's going through and listening to them, figuring out what he could play on his radio show with Randy once he's well enough--and that's been a helpful activity. We're also trying to be more systematic about exercise, and today we went out for a walk for a few blocks. It's the longest he's been able to go, and it really tired him out, but it was an accomplishment. Still, it's better than when he was in the hospital. He got so bored there at one point that I came in and found he had named a fly that was hanging out on his windowsill...Aloisus Delmar. It was half-dead when he found it, but he put down a little bite of food for it, and after that, it hung on for a little bit. But by the time I got there, it was ready for a "burial at sea" in the bathroom. Fortunately, the boredom hasn't gotten quite that bad here, and he's gradually trying to do more things for himself, which is good for both of us. He keeps hoping, though, that Dr. Tse will let us go home before the 100 days are up, and I just don't see that happening. They keep us close to the hospital for a reason.

Day 36--Gettin' Our Kicks

2008-11-19T18:46:00.004-07:00

Despite the title of this post, this has been a pretty low-key day. I just couldn't think of anything else to rhyme with 36. Sicks? Picks? Tom Mix? Nothing seems appropriate. And we have had a little bit of fun, thanks to a quick visit from our friend Maggie, who stopped by the hotel lobby long enough to give me a hug and drop off a really cool little remote control helicopter for Torger to fly around the hotel room. Another good friend, Dave Z., was in town for a dentist appointment and dropped by for a quick hello with Torger (after we doused him with Purell). So I guess we've had our share of kicks for the day. Torger is able to have an occasional visitor now, as long as it's someone who doesn't have kids or work in a library, a school, or anywhere else where germs run rampant. This rules out many of our immediate family members and friends, unfortunately! But it really was good to see a couple of friendly faces this afternoon. Torger had a pretty uneventful doctor's appointment this afternoon, where Dr. Tse just reiterated how well Torger is doing. He said he guessed that Torger is probably in about the top 1% in terms of his post-transplant recovery, and there's no real explanation as to why we've been so lucky. Torger's dad, Jon, suggested good karma, and that's about as reasonable an explanation as any. We think it's Dr. Tse's good karma working on our behalf! It's hard to really communicate the level of personal interest and concern he takes in his patients, to the point where he actually calls twice a day to check in on those days when we're not at the hospital. He even called from Ohio when he was there on a personal visit. We're really grateful that he's our tour guide on this strange and winding journey.

Day 34--Couldn't Ask for More

2008-11-17T15:26:00.002-07:00

Dr. Tse just called with the results of Torger's bone-marrow biopsy from last Wednesday. The exact word he used to describe Torger's progress was "fantastic." He said about 91% of Torger's T-cells are now the healthy donor cells, and he added, "This is very, very positive. This is an excellent number. You really couldn't expect a better number than this." He sounded as overwhelmed as we feel at hearing this great news.

(From MedicineNet.com: "T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body's immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders." The "T" in T-cell stands for thymus...although I like Mom's suggestion that it stands for Torger.)

Torger is continuing to surprise them...at this point post-transplant, they would expect him to have about 10-15% cell regrowth in his marrow, and he's at 50%.

We know we have to be cautious and can't let down our guard, but for the moment, we are feeling incredibly fortunate.

Chicken Soup for the Chicken Soup Hater's Soul

2008-11-15T09:32:00.004-07:00

Among the many pieces of advice Dr. Tse dispenses on a daily basis ("Always wear sunscreen!" "Avoid construction sites!" "This is a long march!"), he has been telling us he wants Torger to eat chicken soup. Every day. Now, this is normally sound advice, since studies are starting to show that chicken soup really is good for bolstering the immune system. But Torger hates chicken soup. Like some other Hougens I could mention, he is a notoriously fussy eater. But some of the foods he used to love don't taste as good to him now, so he has been willing to try a few different things these past few months. I rejoiced when he consented to eat pot roast and didn't even seem to mind it. But chicken soup is a struggle. I've been trying to sneak chicken broth in wherever I can. ("No, really...this is potato soup.") And this weekend I'm going to try making a batch of homemade chicken soup, which I think he'll like because I can tailor it to his tastes. But if he's going to eat it every day, sometimes he's just got to choke down a can of chicken noodle. He knows there are certainly much worse treatments he could be enduring, and he's making the effort to get down all the broth instead of just picking at the noodles. It's just one of those things he has to do, whether he likes it or not. This is a long march.

Day 28--Going to Be Great

2008-11-11T08:06:00.004-07:00

This will be a great day because we don't have to go to the hospital. The visiting nurse is coming over to teach me how to inject Torger with his saline fluid, which we're hoping will reduce the hospital visits to about three times a week. After several days off the Tacrolimus, Torger started back up on it last night at a reduced dose...and he's sleeping soundly at this moment, which is a very good sign that the reduced dose is an improvement. His liver and kidney function have stabilized thanks to the daily liter of IV fluid he's been getting. The GVHD rash on his skin has also settled down. Yesterday, we were both able to exercise a little, which felt really good. I got on the treadmill, and he worked with a weighted ball to try and get some of his muscle strength back. It's really important for him to get up and moving, even when all his body wants to do is sleep. So we're trying to make it a regularly scheduled part of our hotel routine. Even walking up and down the stairs from our room to the exercise room is a good outing for him.

On a different note, we got a card from Torger's donor! Thanks to unintentional clues dropped by several members of the hospital staff, we suspect the donor is from Baltimore. We know for certain that she's a 29-year-old woman who has never been pregnant, but that was about it until she sent this card through the bone-marrow donor registry. She's not allowed to use her name, but it's a great letter, written the night before she made the cell donation:

"Dear Friend: I address this letter to you as my friend, because though I know little about you--Chaver--friend in Hebrew--means friend but also connected. And in some way, we will soon be connected--and though it's unclear if you will now have my curly hair, love chocolate, and cycle centuries--we will always have this connection. I want you to know that it is an honor and privilege to give to you in this way. I feel very blessed. Four years ago this week, my mother, who was 52 at the time, was diagnosed with cancer. Our family journeyed through some very difficult and scary times but since then she has celebrated with us three siblings' weddings, five new grandchildren, and many holidays. Our family is permanently changed by this, but we have grown closer and stronger together. I hope this note brings you hope and strength. As I prayed for you, my friend, last week on Yom Kippur, I prayed that you and those close to you are blessed with hope, strength, and healing. My family is all rooting for you--they want you to know you are getting 'good DNA' and we are now all family. To a speedy and complete recovery. L'chaim/TO LIFE! Love, Your Friend."

Back to the Hospital

2008-11-09T17:15:00.002-07:00

You can tell from his expression exactly how enthusiastic Torger was to be back in the hospital yet again today to get more fluids. My sister Marcy theorized at one point that being in the hospital for weeks at a time would be a lot like being stuck on an airplane--in coach--for the same amount of time. This is the best comparison I've heard so far, and it explains why going back in day after day is not a lot of fun, no matter how much we love the staff. His nurse today said, "At least you guys are patient and polite about it...some people get really angry because they're so sick of being here." (And yes, Torger's pants have a hole in the knee. They're wearing out, but we're waiting to get him some new pants until his weight stabilizes. Right now, all of his clothes are huge on him!)

And Now, For a Brief Political Commentary...

2008-11-09T12:02:00.002-07:00

Torger's life has been saved by stem-cell research, so we were encouraged by this news today. While Torger's transplant wasn't from embryonic stem cells, we've gained a new appreciation for how important this kind of scientific research is to fully understanding diseases that kill people of all ages, including children. The methods Torger's doctors are using today weren't available even 10 years ago--only research has made his current treatment possible.

Day 26--Catching Up

2008-11-09T09:50:00.003-07:00

It's been a tough week in a lot of ways, although Torger is doing OK. Dr. Tse has been monitoring his kidney and liver function closely and adjusting his medications on a daily basis to try and prevent any problems. Apparently, every patient is different in terms of how their bodies absorb the medications, and Torger is like a little sponge...he just takes it all in. As a result, the Tacrolimus (an immunosuppressant they're using to inhibit graft vs. host disease) builds up in his system, which can cause liver and kidney failure and potentially be life-threatening. So they've been checking his blood daily and giving him a liter of saline every day to help flush the chemicals through his system. We now fully understand why we're required to live so close to the hospital during the first 100 days, since we've had to go in every day this week (except Thursday, when Torger pretty much just slept all day recovering from the strain of the day before). Wednesday was the toughest day because the nurses tried to give Torger an infusion of saline through one of the lines on his Hickman catheter, and the line burst! The nurses were pretty surprised...apparently, none of them had seen that happen before. Torger was terrified they were going to have to replace the whole catheter (which the doctors all thought would be necessary) because in his current state of immune deficiency that would be very dangerous. But fortunately, there was a handy RN who was able to repair the line with what looks like some little pieces of plastic tubing and thread. But in the meantime, Torger wasn't allowed to eat or drink for nearly 15 hours, which was really hard on his system...and by the time we got to our late-in-the-day appointment with Dr. Tse, he was just spent. We were both completely frazzled when we got home that night, and I made the mistake of checking my e-mail only to discover that my boss at the University had resigned. After a mini-meltdown, I got ahold of some friends on campus and talked to the interim president, who reassured me that I still had a job. But neither Torger nor I slept well that night.

On Monday, Dr. Tse is making arrangements so I can start giving Torger his extra fluids at home, along with his magnesium, which will make our lives easier. One thing that has been frustrating for both of us is how slowly everything moves now. Torger says that the hospital seems to just slow time down to the point that you either go insane or quit caring about time. If you're scheduled for an hourlong appointment, it can easily take five hours. And at home, Torger himself--usually Mr. Speedy--now moves really slowly, so that getting dressed, putting on his shoes, and brushing his teeth can take the better part of an hour. He hates it because he says it makes him feel so weak, and I admit I get antsy and have to stop myself from rushing him along. He just has very limited energy, and he can't push his body in ways that have always been normal to him.

So now we're here in the hotel, getting him prepped to go back to the hospital for yet another infusion in a couple of hours, after he finishes getting his infusion of magnesium here at home. On the plus side, his digestive problems seem to be clearing up, and he is showing quite a bit of level one graft vs. host disease (GVHD) in the form of a rash on his skin. It's appeared on his face, back, legs, hands, and groin, and this is what the doctors want to see. A little bit of GVHD is necessary for Torger's recovery, but too much is very bad. They took about a dime-size patch of skin off his hip on Friday to biopsy, and so far, Dr. Tse likes what he's seeing. So we're keeping our fingers crossed that everything will just go smoothly for the next few days!

Day 21--Election Day!

2008-11-03T18:14:00.005-07:00

Today's a great day--not just because it's the most exciting Election Day of our lifetimes but also because Torger got permission to skip his magnesium drip yesterday and reduce it today. Hoorah!! He had his regular appointment for bloodwork Monday morning, and both his potassium and magnesium were too high. He's had such a bad reaction to the magnesium infusion that this is a big relief. We understand Dr. Tse's concern about not getting too excited as Torger starts to feel healthier because that could put him at risk. But this is also a good reminder that Torger knows his own body better than anyone else, and he's had a pretty good track record so far of identifying what works for him and what doesn't. Without the magnesium, he had a good, restful day. He was able to eat, sleep, read and listen to music without feeling terrible.

We've had amazing support from family and friends throughout Torger's illness, which I'll write about in greater detail in a future post. Today, I'd just like to highlight the happy surprise we received yesterday from family friend Katie Hoh, a teacher in New Jersey. Her third graders sent us a package of handmade cards, each with a joke that truly did brighten our day. So, I'm pleased to share some of these with you now to brighten yours:

From Hannah: "I heard the invisible man married the invisible woman. Heard their kids weren't much to look at."

From Isaac: "How do you get a baby astronaut to go to sleep? You rock-et."

From Cameron: "What do you call an unidentified flying cow? A MOO-f-o."

From Lyndsay: "Why did the puppy jump into the river? He wanted to chase the catfish."

From Nicole: "What did the prince think of Snow White? He thought she was a little flaky."

From Dominic: "What do you call a pirate with a wooden leg? I don't know, I'm stumped."

From Lauren: "Why did the little pig hide the soap? He heard the farmer yell, 'HOGWASH!' "

From Guinnevere: "Knock Knock. Who's there? Emma. Emma who? Emma 'fraid of the dark!"

From James: "What did the dirt say to the rain? 'If you keep this up, my name will be mud!' "

Also from James: "What did the beaver say to the tree? 'It was nice gnawing you!' "

Another from James: "What do skeletons say before they begin dining? 'Bone appetit!' "

And still more from James (Go, James!) : "What did the rake say to the hoe? 'Hi, hoe!' "

From Katie: "Why can't an elephant ride a bike? He doesn't have a thumb to ring the bell!"

And another from Katie: "How do elephants earn extra money? They babysit for bluebirds on Saturday nights!" (I confess, I'm not entirely sure I get this one...but I like it.)

From Stephanie: "What did the Invisible Man's mother say to him? 'We never see you anymore.' "

From Storm: "Knock Knock. Who's there? Cameron. Cameron who? Cameron over here."

From Jaclyn: "What is black and white and red all over? An angry zebra."

From Lisa: "Knock Knock. Who's there? Howard. Howard who? Howard you like to hold the puppy?"

Now get out there and vote if you haven't already!

Day 20--Pancakes A-Plenty

2008-11-03T09:06:00.002-07:00

We are becoming a little food-obsessed. Keeping Torger's weight up and getting food in him that will stay there is a constant challenge, and certain kinds of food are proving useful in helping him get his many pills down three times a day. For me, the obsession comes, in part, from trying to figure out creative ways to prepare healthy meals in our tiny little doll kitchen. (I've already had an unfortunate, charbroiled banana bread experience with the toaster oven.) Good old-fashioned pancakes are turning out to be one of our mainstays because 1) I can make them in one pan on the stovetop; 2) they provide enough heft to calm Torger's stomach for his morning meds; and 3) they're delicious! Here is my favorite wonderful pancake recipe for two--it makes three or four medium-sized pancakes each. If you have more than two people, just multiply. Torger just puts honey on his, but I like mine with butter and maple syrup.

In a bowl, stir together:

1/2 cup white flour
1/3 cup whole wheat flour
1 tsp. baking powder
1/8-1/4 tsp. salt (depending on how much you like)

In a separate bowl, whisk together:

1 egg
1/3 cup milk + 1/2 cup milk (I've never added the fractions to combine this into one number, and it's easy to remember because it's just like measuring out the flour. Also, I use skim milk, but I'm sure other kinds would work just fine.)
1 T. honey
2 T. canola oil
1/4 tsp. vanilla

Stir dry ingredients into the wet ingredients until just blended. Batter will be lumpy. If it seems too thick and cushiony, just add more milk to thin it to your desired consistency.

Heat a skillet until a droplet of water will dance on the surface. I use a non-stick skillet with no oil, which works perfectly. Pour batter onto skillet. If you want to add in treats here (I like to add blueberries), this is the time to do it. Just dot them onto each each pancake. Batter should bubble, and when it just stops, flip 'em over and cook until they're done.

Day 19--Oh, the Magnesium!

2008-11-02T19:03:00.005-07:00

Well, it turns out we don't actually have a home healthcare nurse coming in daily to administer Torger's IV magnesium infusion. The nurse came by Thursday morning and taught me how to hook Torger up and run the equipment, then left us with a fridge full of IV bags, some rubber gloves and a pump. Now it's one of my jobs to make sure he gets his 6 gram dose of magnesium every day, even though he really, really hates it. When he's not getting magnesium infused, he feels energetic and good. But when he's getting the infusion, all he can do is sit around and moan. I feel like I'm torturing him every time we have to administer it--he says it makes him feel like he's burning inside and he can hardly stand it. Friday's infusion was so painful for him that we called Dr. Tse yesterday to ask whether we could reduce the dosage, since 6 grams is an awful lot and Torger's levels were all good when we went in for his bloodwork on Friday. Dr. Tse let me slow down the pump so Torger gets the dosage over the course of six hours instead of three, which has helped some. But he also told me that I have to be the bad guy now and make Torger follow his medical regimen even when it's hard on him. He reminded me that we still have a long way to go in the treatment process, and even though Torger feels good, he's far from well. Apparently, Torger's body is just chewing up magnesium and potassium right now, and Dr. Tse said if the levels get too low, the complications could be life threatening because magnesium is necessary for heart and muscle function. So we're doing as we're told, and Torger's just suffering through it.

In addition to being on the magnesium pump for six hours every day, he has to take the following medications now:

At 8 a.m. --Pantoprazole, 40 mgs, to prevent ulcers; voriconazole, 200 mgs, to prevent fungal infections; tacrolimus, 1 mg., an immunosuppressant; ursodiol, 300 mgs., to protect his liver; acyclovir, 800 mgs., to prevent viral infections; amlodipine, 10 mgs., to treat high blood pressure (from all these other medications); potassium chloride, 40mEq., to treat low potassium; benzonatate, 100 mgs., to treat his persistent cough; metronidazole, 500 mgs., to prevent diarrhea; and a multivitamin.

At 2 p.m.--Another 300 mgs. of ursodiol for his liver; another 40 mEq. of potassium; another metronidazole; and more of the cough medicine.

At 8 p.m.--Yet another 300 mgs. of ursodiol for the liver; still 2 more of the potassium pills (which are huge and have remarkably sharp edges); another 200 mgs. of voriconazole, the anti-fungal; another 800 mgs. of acyclovir, the anti-viral, another 1 mg. tacrolimus; another metronidazole; and another cough pill.

Then twice a day on Mondays and Thursdays he gets Bactrim to prevent pneumonia.

It's quite a cocktail! And it's a big adjustment for Torger, who doesn't even like to take aspirin normally. Our days are pretty well structured around administering various medications, although he did manage to have some fun on Friday. The 11th floor BMT unit had a little Halloween party, so he put on the mask he's required to wear whenever he's out, we wrapped around the rest of his face with gauze, then he donned sunglasses, a suit, gloves and a fedora to be The Invisible Man. His voice his so hoarse that he did a nice Claude Raines imitation! The nurses and other patients got a laugh out of him showing up, although they wouldn't have been able to tell who he was if I hadn't been with him! I did try to take his picture for the blog, but it didn't turn out (because he was invisible).

Day 16--All Good News

2008-10-30T09:19:00.011-06:00

I apologize for not posting this past week, but I'm pleased to report that it's because of Torger's whirlwind engraftment! (Torger says there's something about telling jokes, having a reason to live, and having a wife who really loves you and does stuff for you that seems to help. I'd add a smiley face icon here to accentuate this point, but I don't know how to do it in this blog program.) He is now fully moved in with me at the hotel, and by all accounts, he is doing remarkably well post-transplant. His nurse coordinator even told us that when they called her to tell her Torger was being released from the hospital, her response was, "Who?!? You're kidding!" Another nurse told him she'd never seen a patient get through the initial transplant process so quickly and smoothly. He's still very sick and far from living a normal life, but Dr. Myint, who heads the CU BMT unit, said, "You have engrafted beautifully." Fewer than 2% of patients get through the hospitalization portion of the recovery process without even a fever, but Torger was in that 2%. He's had a rash from graft vs. host disease on his leg, arm, and face, but it has remained at level 1, which is beneficial. He had difficulty walking all weekend because of the pain in his legs, which the doctor says is from the new, healthy donor cells trying to escape from his bones. And eating continued to be a problem for Torger until just the last day or so. But his cell counts were high enough that yesterday they released him to my care. We're required to live within 20 minutes of the hospital for the 100 days after transplant, so we're ensconced in a hotel 5 minutes away where Torger has his own bedroom and bathroom, per the doctor's recommendations. We'll have doctors appointments at least twice a week, and a home healthcare nurse coming in to the hotel daily. But it's already been a huge improvement for Torger, who was going a little stir crazy in his hospital room. He got scolded earlier this week because he was hanging out in another patient's room visiting--a temptation that's tough to resist when you're all in there for treatment for weeks at a time.

One of the best parts about getting out of the hospital for Torger is being "off the pole." Every patient on the BMT unit (probably anyone being treated for any type of cancer) gets used to being hooked up to a pole getting IVs all day and night. If you want to go to the bathroom, take a shower, sleep, walk, change clothes--anything--you have to work around the pole, which is not exactly a graceful apparatus, especially when it's laden down with eight different bags of chemicals or fluids. So Torger felt a great sense of freedom as soon as he was off the pole, and it got even better when they pulled out the picc line from his chest, which has been in place since May 13. These were connected to the tubes ("lumines," technically) that hung from his arm. He still has the Hickman catheter in his chest, but now he's back down to three tubes instead of six.

We're just starting to establish our routine at the hotel, which is going to be a bit of an adventure. Having read "Eloise" as a kid, I've always thought living in a hotel would be kind of fun, but it actually takes a little getting used to. Finding a hotel with two bedrooms and bathrooms that wasn't just outrageously expensive was a challenge in and of itself, but we were fortunate that the nicest of all the hotels we explored also offered us the best rate. HUGE thanks to my friends Sarah and Coleman, who were here this weekend and got the room organized while I was with Torger at the hospital. The room has a little kitchenette with a fridge, microwave, and a two-burner stovetop, and we brought in a toaster oven and some of my stuff from home (crockpot, rice cooker, pots and pans). I've got to cook Thanksgiving AND Christmas dinners here, so I wanted a toaster oven that was big enough to cook a little turkey breast or a very tiny roast. One of the bedrooms is Torger's, and we've got all his medical supplies, books, and art materials in there. When he walked in the door for the first time yesterday, he headed straight for his bed, fell into it, and said, "This is heaven." The other room is mine, and I've also got my work office in here. Adam from the office was kind enough to come down and help arrange a nice computer set-up so that I can telecommute for the next three months. I have files and papers strewn about the extra bed in the room, so Torger says it looks pretty much like my office at CSU now! The staff at the hotel have been very welcoming and supportive, even bringing Torger a gift basket of candy and rootbeer when he got in yesterday.

So until the end of January, our address will be: Cara Neth and Torger Hougen, Room 226, Homewood Suites-Denver International Airport, 4210 Airport Way, Denver, CO 80239.

Day 10--An Upward Trend

2008-10-25T11:53:00.002-06:00

Thanks for the daily title, Mom! Torger is definitely on an upward trend, although he's starting to show some signs of graft versus host disease (GVHD). A little GVHD is a good thing, but too much is very dangerous. So the doctors are keeping an eye on things. So far, it's just showing up as a rash on his neck and legs. He also feels like his legs are falling asleep when he walks around, which one of his doctors said is an effect of the engrafting process. Supposedly, the more he can walk and work his legs, the better it will be for the new cells working their way into the bone marrow. So we've been doing laps around the floor as much as we can. My friends Sarah and Coleman are staying with me at the hotel this weekend and helping get it set up for our long-term stay. But the big news at the hospital Friday was a campaign visit by Hillary Clinton. It was a huge event and everybody on the floor seemed excited, but it really made parking even more of a hassle than usual. I think my concerns have become very parochial, but I was much more interested in getting Torger his Jello in a timely fashion.

Day 9--Towin' the Line

2008-10-24T11:31:00.005-06:00

With apologies to my dear friend Lauren, Day 9 wasn't quite "divine"--but it sure beat the day before! The doctors told us that the new cells would be intensively engrafting between Days 9 and 21, and that's what's happening with Torger right now. His cell counts are starting to turn positive, and he's slowly but surely feeling a little bit better. His bones are still aching really badly, but that's from the new cells working their way in, so it's all part of the process. No more vomiting Thursday--in fact, he was able to get down a full bowl of chicken noodle soup at lunch (Dr. Tse has actually asked that he eat a lot of chicken soup), and he even ate part of a hospital dinner. He's fighting a little cold, but none of the doctors seem as worried about it as Torger is, so we're trying not to obsess over every sniffle. Torger says he's become a little worried about spontaneous human combustion, since so many of the chemicals they're pumping into him are combustible--and he's hot all the time. The nurses and I think he's just having hot flashes. His head hair and facial hair are all pretty much gone now, so he looks like a little egg. We did get a sense Thursday afternoon of why he has such a hard time napping during the day: There's a constant stream of traffic in and out of his room. The doctors, nurses and CNAs (who are all mostly nursing students at University Hospital) come in several times an hour to check his vital signs, change out infusion bags on his pole, give him medications, or check his general well-being. But then yesterday, Gail the art therapist came by for her weekly art talk, one of the off-duty CNAs came by to show Torger pictures of the pumpkins she's been carving, and CNA Brian, who was actually working on another part of the floor, came by to discuss the grade on his latest essay for his English comp class. Torger enjoys the social interaction, but he perks up so much with each visit that it's hard for him to quiet back down and take a nap! But even with the achy bones and fighting a cold, this was a good day overall. We feel like he's really making progress.

Day 8--Not So Great

2008-10-23T23:53:00.002-06:00

Torger felt good Tuesday night and did some drawing, but by Wednesday morning, he was really feeling tired and wrung out. He threw up the Ensure he tried to get down (which may have been a reaction to the Ensure as much as a signal of an upset stomach). His potassium and magnesium have been low, so he's been getting extra doses of those, and his bones are really aching to the point where he's not altogether comfortable lying down or sitting up. He slept on and off throughout the day, but he never really perked up. Fortunately, Jan was his night nurse. He's really comfortable with her--she's smart and funny and takes no crap!

Day 7 and Didn't Go To Heaven

2008-10-22T09:26:00.003-06:00

That was the motto for Tuesday ("Day 7-Didn't Go to Heaven"), and it seems to have worked. Despite throwing up in the morning and continued digestion problems, Torger had a better day than the one before. We're thinking that the methatrexate he gets on Days 1, 3, 6, and 11 contributed to him getting really sick on Monday, and the problems he's having with his sinuses and digestion are just part of going through the transplant process. But fortunately, he's now finished three of the four doses of methatrexate, and getting all four doses in is very important for his recovery. (If a patient gets too sick, with mouth sores etc., they have to stop the doses, which then can make the person more vulnerable to graft versus host disease later on.) I was able to get him to eat a little more, thanks to my sisters' reminders that they give their kids bananas when their stomachs are upset. I got some bananas, washed them with hospital soap and peeled them--Torger isn't allowed to touch the peels--and he ate two of them! He was also able to keep down two pieces of Wonder Bread, which I don't think he's had since he was a toddler. The infectious disease specialist came by in the afternoon to check out the lesion on Torger's tongue, and she thought his constant mouth-rinsing was really helping. Dr. Tse also popped in, and he said Torger was doing much better than he'd expected--which was a fantastic thing to hear, given his poor prognosis before the transplant. By the evening, Torger was feeling a lot better. His bones are aching from the marrow being killed off and replaced, but a little Tylenol helped with that. So all in all, not a bad day...and probably the first time I've felt really, wholeheartedly that he was going to make it through this.

Day 6--Not So Fun

2008-10-20T23:52:00.003-06:00

Today was rough. As today's nurse Sarah said, they pretty much ran cultures of everything. Torger's having intestinal problems and is starting to get a lesion on his tongue, despite his constant mouth rinsing. He got a bloody nose mid-day, so they did a catscan of his sinuses, and just when he was starting to feel a little bit better, they came in with the largest hypodermic needle we'd ever seen and drew a full ounce of blood out with it. Then they took two more hypos of blood, just to be on the safe side. After that, Torger felt really weak all day and slept a lot. He had five or six bags of fluid and medication hanging from his pole all day, along with all the pills they were giving him orally and one shot that he's been getting daily. They switched him to a new antifungal drug as part of trying to keep all of his symptoms under control. Eating is becoming a problem because nothing tastes or feels good to him. We laughed this summer when Ilsa sent a note reminding us that at least hospitals have excellent Jello. Little did we know! Our hospital uses off-brands of a lot of things, so instead of Rice Krispies they serve "Rice Crunchin's" and instead of actual Jello, they serve "Gel Treat." Now, I'm not a huge Jello fan myself, but I can tell just by looking that Gel Treat is no Jello. So I went out and got Torger some actual store-bought Jello, and he was able to eat one of those and a small container of applesauce. But that was about it for the whole day. The nurse was going to bring in some Ensure before he falls asleep tonight to see if he can get that down. We're hoping tomorrow will be a little easier, but we're prepared for it to stay rough for awhile.

Day 5 And Still Alive!

2008-10-20T09:06:00.003-06:00

This was Torger's slogan for Sunday ("Day 5 and still alive!"). Day 5 is typically when transplant patients really start to feel sick, and that seems to be true for Torger. His energy levels really crashed, and he had to get a platelet transfusion. Platelets--the part of your blood that helps your body heal cuts and prevent bruises--are the first things to go post-transplant, and the last to come back. (Shout out to our sister and bro-in-law, Marcy and Mark, who are long-time platelet donors. These are a precious commodity...there was one day this summer when the hospital actually ran out. If you can, donate today!)

Torger's dad, Jon Hougen, has been doing some reading and provided a nice, succinct summary of what is happening in Torger's body right now. This is pretty much as the doctors have explained it to us: "The transplanted (healthy and aggressive) white blood cells attack and kill all of Torger's remaining (few and weakened) white blood cells, thus ridding his body of every last cancerous blood cell with an efficiency that chemo, etc. can't possibly match. Graft versus host disease is when the transplanted white blood cells go on to attack some of the other kinds of cells in Torger's body, thus causing great damage to the host (Torger)." Right now, we're still in the "graft vs. leukemia" stage, where the donor's cells are wiping out Torger's blood so they can engraft and fill his system up with new, healthy blood. But graft vs. host disease will be a big worry for us over the next several months.

Day 4--Red Spots and Puzzle Art

2008-10-18T22:51:00.000-06:00

It was a relatively quiet day. Torger got some platelets in the afternoon (thank you, anonymous platelet donor!) and about a half hour afterward some red spots appeared on his forehead, ears, and neck. This is the kind of symptom they watch for carefully, so they retested the platelets remaining in the bag to make sure there was no problem. There wasn't. They gave him some Benadryl and the spots settled down. Dr. Tse stopped in just to check on things and told us a story about a former patient who laid in bed for three days then got pneumonia and died. We hear a lot of these cautionary tales, and they're actually very helpful because, while it might be easy to forget a simple instruction about spending too much time on your back in bed, it's really hard to forget the story about the athletic guy who died after spending three days lying around.

We watched an old "Jack Benny" episode and worked on the latest 1,000 piece puzzle in the solarium. We did start to wonder about the art that's on a lot of these puzzles. Does someone paint the picture first, or does the puzzle company say, "Give us kind of a lame painting so we can chop it up into a puzzle"?

The First Five Days

2008-10-18T12:28:00.000-06:00

I had a little computer trouble, so I haven't been able to get my entries posted 'til now. So here's a rundown on what's happened over the past 5 days.

DAY 0

This was the day of Torger's transplant, which turned out to be fairly anticlimactic. We were a little anxious all morning. I got to the hospital about 6 a.m., and Torger took a shower and had a microwave pizza for breakfast. But once the procedure started, it was pretty uneventful. As this picture shows, getting a transplant is basically like getting a blood transfusion, but in this case, it's a transfusion of 170 cc's of new stem cells. (Thank you, science!) Torger looks a little pained in the picture, but actually, I just caught him in mid-sentence...he was chatting with me and the nurses and cracking jokes throughout the procedure. We started the transplant a little after 1 p.m., and it was complete by 2:05.

One of our favorite nurses, Kelly, and one of the charge nurses, Anslie, managed the whole procedure. The hospital always sounds a chorus of Brahms' Lullabye when a new baby is born, so we all speculated on what song they should play when someone gets a transplant. "I've Got You Under My Skin"? (During one of Torger's first procedures at the hospital, the surgical team put on a CD of Queen's greatest hits, and the first song that came on: "Another One Bites the Dust." He thought it was hilarious, but apparently everyone else in the operating room dove to shut off the music!)

DAY 1

The first 24 hours after transplant passed smoothly. Dr. Tse told Torger he wants him to rinse his mouth with peroxide or saline solution every 15 minutes while he's awake, to help prevent mouth sores. Mouth sores in leukemia patients are extremely painful and debilitating, and they can slow up the post-transplant treatment process. Having to break the day up into 15 minute increments actually helps the time to pass a little more quickly, and Torger feels like all the drugs he's on have left him with an attention span of only about that long anyway. He is officially sick of hospital food, and as outstanding as University Hospital is in every other way, the food is really not good. So we've stocked the floor refrigerator with things he's allowed to eat--essentially, processed frozen crap. Burritos. Pizza. Freeze-and-heat sandwiches. I did find some good little veggie and rice frozen meals that he likes, so that helps. Eating is very important for transplant patients, and it can be hard because the chemo and drugs interfere with taste. So it is part of my job to find things he'll eat and to keep him fed.

Day 2

Torger is on the following drugs right now, although this changes daily:

Levaquin, 750 mg
Acyclovir, 800 mg twice a day
Posaconazole, 200 mg three times a day (anti-fungal)
Nexium, 40 mg
Actigall, 300 mg three times a day
Methotrexate, 18 mg by IV on days 1, 3, 6, and 11 (helps to minimize graft vs. host disease)
Leucovorin, 5 mg IV every 12 hours x2
Tacrolimus, 2.3 mg. IV continuously
Ursodiol (to help prevent gallstones)

So far, the only problem he's had are what he calls "chemical dreams"--really frightening, vivid nightmares. Apparently, this is a fairly common side-effect from the Tacrolimus, but they got so bad last night that he didn't want to go to sleep and was forcing himself to stay awake, a situation he compared to "Invasion of the Body Snatchers." His doctors were concerned enough about his lack of sleep that they prescribed an anti-psychotic medication to counter the effects of the Tacrolimus, and that seems to be helping.

Otherwise, boredom is Torger's biggest challenge. Gail, the art therapist for the oncology floor, visited today, and she and Torger always have good art talks. He's been drawing, but she left some watercolors and paper for him to play around with (and teach me a little technique). We played Scrabble in the afternoon and watched a little TV, then talked until he got tired.

Day 3

Torger wanted me to mention on here how important it is for someone in his position to have a trusted caregiver--whether a spouse, family member, or friend. The nurses and CNAs on the 11th floor BMT (bone marrow transplant) unit at University Hospital are the best. Really warm, wonderful people. But they have a job to do, and it's really important for transplant patients to have someone worrying about their less medical needs...food, comfort, sanity. This is a long, kind of boring process, with a lot of waiting and just sitting around in a very confined space, hoping that the new cells do their job. Fortunately, Torger has always been good at entertaining himself, so he's established a lot of daily routines just to get himself out of bed and moving around. He does morning exercises in his room, reads, draws, and watches life on Colfax out his window with his binoculars. Two of his buddies on the staff, Jerry and Brian, have brought in movies for him to watch, and he has a supply of his own, of course, including one about a man-eating brain ("The Brain") and the "Thunderbirds" Supermarionation series from the '60s. We all keep a communal puzzle going in the solarium down the hall, so he and I sometimes work on that, and we've been playing a lot of Scrabble. We've got his room all decorated for Halloween, and he's got an Obama sign on his door. And of course, he has to do his peroxide mouth rinse every 15 minutes! It's actually kind of pleasant to feel like our biggest challenge is just finding ways to fill his days and keep him active. Mostly, we're just grateful he's not feeling sicker. He's easily tired, but otherwise, he's feeling pretty good so far.