Day 212--Wow! That Went Fast!

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

One Year Down!

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

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

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

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

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

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

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

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

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

Day 188--Happy Birthday!

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

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

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

Day 185--Perhaps Just a Hive?

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

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

Day 175--Whatever Happened to Salsa?

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

Day 174--Checking Back In

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

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

Day 146--Keeping Our Focus

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

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