Minor Monday Becomes Major

I didn't think Monday was going to be as important as I have now learned that it is.

I thought it would just be the last day before my stem cell transplant, and the day I got a new line. For several days, my attending physician has talked about how we were just counting down the days to transplant, and the Monday would be a little busy because we would be putting in a temporary line for the transplant. (After two infected central lines, my team has decided to avoid long-term ports for me.)

Over the last few days, the ID folks would occasionally stop by to say everything seemed fine, which also suggested a clear path to Tuesday's transplant.

I had not seen the ENT staff since Wednesday, when some ambiguous imagery on a CT scan encouraged them to take a look with some bedside tools. They could not see as far in as they would have liked, but in the absence of symptoms — pain, vision problems, fever — they also didn't too concerned. Without hearing any more from them, and with my attending's repeated description of minimal action on Monday, I thought I knew what Monday would be like.

Then, for not the first time in this round of treatment, I get a visit from anesthesiology about an upcoming sinus surgery that I am not expecting. This throws me off balance. I feel like the various teams of doctors looking after me aren't communicating with each other, because I feel like I'm getting different messages from different teams. I let various doctors and nurses know how I feel about this.

At one point, I'm wondering whether the sinus surgery can actually prevent the transplant from happening. (It cannot.) The surgery does not sound too bad — mostly a looking around — but I still dread it, for multiple reasons.

If I'm lucky, they clean out some crud left over from earlier visits, they don't find anything new and alarming, and they pack my nose full of crap for another week and a half. Transplant on Tuesday.

If I'm less lucky, everything is the same as above, except that they find more active fungal infection hiding underneath the crud, which they (again) do their best to remove. Then there's a complicated couple of weeks as the fungus tries to exploit the missing immune system, the doctors battle the fungus with medications, and the new immune system boots up after the transplant.

So, I'm not happy about my upcoming surgery. I'm not happy that it was a surprise, I'm not happy that I'm going to get my nose packed again. I'm especially not happy that my illusion that I was past worrying about the fungal infection has been broken.

But, on the other hand, it needs to happen, so I'm glad it's happening. We need to know what we're dealing with.

Deck the Halls

Because we have always visited family in the Boston area over the holidays, we have never decorated our house. With my upcoming travel restrictions, the Seeleys will be spending their first Christmas in Champaign since Jan and I moved out here in 1987.

On Saturday, a team from Human Kinetics visited to give the Seeley home an uncharacteristic holiday makeover. Our neighbors are going to wonder who is living at the house and what they have done with the Seeleys.

Doug untangles lights under the guidance of Steve's kids.

Kim, Dalene, and Jill prepare exterior decorations.

Joanne and Keri before working their magic on
the tree.

The Seeleys, real tree people since childhood, have made the transition
to a ... reusable tree. This was our wonderful work crew,
minus the Ruhlig family that had to leave earlier.

Kerri wonders what she has gotten herself into.

Wow!

Enjoying some well deserved refreshments.

Looking good at night, too,

Yard Work

I usually handle most of the yard work at our house. I don't resent it; I enjoy it. I like the smells, the colors, the sounds, the effort, the results... Unfortunately, one aspect in particular, the smells, is inextricably linked to the molds and fungi that keep trying to establish colonies in my head and/or lungs, with potentially deadly results. So, no yard work, even when I was home in the spring and summer.

Since my medical team did not approve my leaving the hospital to take care of the end-of-fall yard work, we were blessed with a work crew.

Bob goes the solo route.

Mary, Janna, and Mandy take a team approach.

Lisa, Mara, and Ellen

Paul likes letting machines do some of the work.

Fred and Mark round out the crew.

All Aboard for Transplant Station

My chemo started Tuesday morning. 4:00 a.m. in the morning. Lots of bags and pre-meds and blood draws. I didn't care. No noticeable side effects. On the first day, it's Fludara and Campath.

Repeat Wednesday morning, with the addition of Busulfex. Still not seeing any side effects, including the one that would alarm me most: changes in menstrual cycle. Sleep is constantly disrupted, as is the day time, but I don't care. I had a blood test drawn in the morning to test my response to a dose of platelets which I would receive several hours later. They're going to be disappointed in the results, and I'm going to get stuck again later so they can get real results. Doesn't bother me.

I decided it was time to shave my head, since I was not fond of the retreating glacier model of hair loss:

Proof that cranial cooling is happening, and it's caused by man.

This is my "kick leukemia's butt" look.

Day 3 of chemo is today. Still feeling good. I know the chemo is the worst part of treatment for a lot of people, and I feel fortunate that that is not the case for me. Of course, I get to grapple with brain-eating fungi and emergency surgeries, so maybe I'm getting the short straw after all.

Speaking of fungi, the ENT team is still nosing around my sinuses like pigs after truffles, trying to decide whether to start digging again. A recent CT scan showed "some stuff" where ideally there wouldn't be anything, but where there often is stuff even in perfectly healthy people. It seems like still an open question for the ENT team, but I get the sense they are leaning toward watchful waiting in the absence of symptoms.

Two more days of chemo (Friday, Saturday), two days of rest (Sunday, Monday)... Transplant on Tuesday!

The Good News Is...

My biopsy results indicate that I am ready to proceed to the transplant phase. (!)

Since the failure of the October chemo, and the sinus infection, the plan has been to avoid infection, try a different chemo, do a biopsy, and —if the biopsy results were as desired — head into the transplant phase.

Left unspoken has always been, what if the biopsy results weren't good? Fortunately, we can skip right over that possibility now.

A Widening Path

My blood counts and I have been doing what we should this past week. No white blood cells. No fevers.  Clear lungs. No indication, either from test results or symptoms, that the fungal infection in my sinuses is active. Daily walks (about 30 minutes). Eating well.

My reward is that I have a bone marrow biopsy scheduled (originally Friday, now moved to today for staffing reasons) and a tentative chemo+transplant schedule starting next week.

Yesterday, I had a lot of doctor visits. I had been requesting a visit from the ENT folks, to confirm that the crud I still have in my nose is an expected part of the recovery. I got one visit, got my confirmation after a little viewing with a pen light, and thanked the doctor for reassuring me. I told here that was all I needed — just a figurative (but informed) pat on the hand telling me I'm doing fine. Later in the afternoon, a larger ENT team showed up, somehow under the impression that I was increasingly concerned about my sinuses. For them to really tell me all is well, they would need to run a scope up my sinuses. This is mildly uncomfortable, but the bigger problem is that it carries risks. With my blood counts as low as they are, sticking anything into my sinuses could, despite sterilization precautions, introduce some infectious agent that I can't fight, or could restart the bleeding that finally stopped after three weeks. In the absence of clinical evidence of an infection, it's not worth the risk. Which is fine with me.

I also had a couple of visits from the the Infectious Disease team. The first informed me that they were running some tests on the vulnerability of my particular fungal antagonist to one of the antifungal meds I was receiving. The second informed me that they had just learned that that particular antifungal appeared to be quite ineffective, so they were switching me to something else. Yikes! I'm glad they did the legwork and figured this out before anything bad happened, but it's still unnerving.

My Campaign for Quiche

I have mentioned before that the improvement in the food service has been tremendous: many new healthy choices, an after-hours menu, and daily inquiries about me and my food orders. Patients can also order from the staff cafeteria menu for lunch and dinner on weekdays, further adding to the variety available.

And I have found the food service open to modifications. One common modification for me lately: the hummus appetizer with cucumbers, carrots, and pita chips, substituting extra cucumbers for the carrots and pita chips.

There are two women with responsibility for two floors, and I think they stop by each room at least once a day to check in with the patients. I think one may be responsible for recording information about each patient, while the other one is focused on helping patients find items that may appeal to them, but they seem to ask similar questions and make similar suggestions. And there is an occasional phone call asking for my overall feedback on the service.

My feedback: I am very impressed with how thoroughly the hospital system has embraced the idea that eating well is a critical part of the patient experience.

(Ironically, as I write this, I have experienced my first delivery delay. We pretty consistently receive our order within 45 minutes, and tonight's dinner took 90 minutes to get here. Given the length of my current stay, that's still very good performance overall.)

On Sunday, Jan visited with some leftovers from the Champaign Thanksgiving dinner she and the boys had made on Friday. (I had joined via Skype, from a laptop sitting on a counter overlooking the dining room table.) These leftovers were much better than the Boston Market offerings we had shared on Thursday. My favorites were a cranberry chutney that Jan made, pumpkin cheesecake that Paul made, and a ham and gouda cheesecake quiche that Jake made.

While enjoying my leftovers, I had a revelation: there was no quiche on the menu, and there should be. For many chemo (and other) patients, it is hard to get enough nutrition. People have low appetites, taste buds have gone haywire, mouths have sores in them. In general, eating is a chore. The typical solution is to offer these patients a liquid nutritional supplement such as Ensure or Boost, which packs a lot of carbs, protein, and fat into a small drinkable package. My personal experience, and I know this is true for others, is that these drinks are nauseatingly sweet. I can't drink them, especially with chemo mouth.

But cold quiche, on the other hand... loaded with carbs, protein, and fat; smooth and creamy; not sweet... perfect.

The next time my regular food service visitors stopped by, I pitched quiche as a menu addition. A nutritionist also stopped by — a weekly occurrence, I think — and I made the case for quiche to her, too. They all agreed it would be a good idea and said they would pass it on. One of my daily food service visitors also told me quiche is available in the staff cafeteria two mornings a week. Patients cannot order from the cafeteria in the morning, but she promised to bring me some personally. Which she did. (It was not as creamy as I think a quiche should be, but it was decent.)

Operation Quiche is not as significant as my previous Patients Need Better Food Campaign, but that's a great thing. When you are suggesting a single addition to the menu instead of arguing for a total overhaul, you're in a pretty good place.