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

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

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!

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

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

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

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

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."