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

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!

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

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

Year 2 Day 4--Sigh

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

Day 365--HAPPY ANNIVERSARY!!!

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

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

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

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

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

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

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

Day 343--Changing of the Guard

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

Day 342--Nothing New

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

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

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

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

Day 299--Latest Health News

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

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