Day 175--Whatever Happened to Salsa?

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

Day 174--Checking Back In

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

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

Day 146--Keeping Our Focus

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

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

Day 144--Suppressed No More!!

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

Day 141--I'm a Blog Slacker

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

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

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

Day 131--Waiting for the Sun

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

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

Day 124--Back in the Fort

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

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