Katie's BMT Updates

I wish I could say that my stomach pain has completely resolved itself, but it's still causing me a fair amount of pain. It comes and goes, but when it's on, it's a constant cramping that leaves me doubled-over and miserable. It feels exactly like having the worst diarrhea of your life, without the actual diarrhea to show for it. Even a simple bowel movement, which is usually followed by a sense of relief, does nothing for me.

I've had the ultrasound -- negative. Ditto for the CT scan (in fact, long time followers of my health saga will be pleased to know that the spot on my liver that turned out to be a benign mass of blood levels a few years ago remains unchanged, if not smaller). I saw my doctor yesterday and everyone agrees that we're probably dealing with a little Graft vs. Host Disease in the digestive system. He's treating me with a non-invasive steroid called Entocort. Since it confines itself to the digestive system, it doesn't cause any of the dreaded steroid side effects (like moonface, weight gain and a lot of other things that I couldn't hear after "moonface" and "weight gain"), but it is also less effective than an all-out steroid like Prednisone. Hopefully, the Entocort will work because, otherwise, the next step is ... you guessed it ... Prednisone ("moonface," "weight gain" ... If you think you can't be vain and have cancer, think again).

Oh, and since lactose is harder for the digestive system to break down, it's been suggested that I give up dairy products for now. "It can't hurt," they say. Can't hurt who? Remember, I am the girl who eats grilled cheese for lunch every day and has come to love ice cream after dinner. (Luckily, my friend Kristy, has been wheat and dairy free for years, so she has had a lot of lovely "alternatives" to suggest, so apparently it's not purgatory.)

I also still have the good 'ole GvHD rash, except it's spread to nearly every part of my body -- except, thankfully, my face. It's really manageable, though, because the Triamcinolone Acetonide 1% cream the Nurse Practitioner prescribed works wonders.

Toward the end of the visit, I pressed my doctor with the pointed "How am I doing?" question and he said I'm doing "better than average" and that my GvHD is actually pretty "mild." For a minute I pondered just how horrible "moderate" or even "really bad" GvHD in the digestive system could be, but then -- shuddering -- I decided to put it out of my mind.

At the end of the visit, I bumped into my old friend, Doubt in the hallway and then ran into my frequent companion, Anxiety in the elevator. What's wrong with me? I had just had a good visit with my doctor. Yes, I'm having a few problems, but they can be managed at home (I can't tell you how many times the doctors and nurses have told us that complications are common and to expect at least one other hospital stay sometime during this process). My numbers are good (liver slightly elevated, but basically stable). Everything's good, right? Right.

But here's the thing about me, my Achillles Heel, my worst enemy ... the thing that those closest to me often find most tiresome: I need things to be perfect. I want to know things are going well and that I am going to live. Otherwise, I feel off-balance ... like I'm teetering out of control and that, at any moment, I could fall into a black abyss. I know that it's impossible to have the concrete assurance I crave, at this point. In fact, I know that I'll probably never have "concrete assurance" about anything in life -- that's not how it works. The challenge is that I have to learn how to allow for a little uncertainty and leave a little room for hope. It's now -- and has always been -- my biggest hurdle.

--Katie

As many of you know, part of my recovery from the bone marrow transplant is that I have to remain somewhat quarantined. I can go to clinic and go home. I am allowed outside, as long as there are no crowds and I'm sufficiently sheltered from the sun. Basically, I'm to avoid large groups of people, especially in confined places like movie theaters. That means I wasn't able to go see "WALL-E," the latest hit flick to emerge from Pixar Animation Studios. Normally, I'd be content to just wait for it to come out on video (like "Sex in the City"), but seeing "WALL-E" was especially important to me because my husband works at Pixar and we have always shared and celebrated the release of each new film. Well, on Saturday, I got the chance to see "WALL-E" at Pixar in a very uncrowded theater. It was absolutely thrilling -- not just the movie itself, but the fact that I got to go out!

It was also Zach's first movie in a theater. We decided to take him because he loves "WALL-E," having watched the trailer ump-teen times on the internet. When the lights went down, he was skeptical and when the short preceding the film started, he started to cry. Our friend, Hilary, took him out for awhile, but then brought him back later after "WALL-E" had started. Recognizing his hero, he sat transfixed on my lap for about thirty minutes of the film and then said, "I want to play trucks." Hilary took him out to play while Ian and I watched the rest of the film.

As the credits rolled, we held hands and watched, as always, for my husband's name to appear. I got really choked up all of the sudden, caught up in the specialness of the moment. It's true what they say about how being sick can make you see things differently, notice and appreciate things more. A lot of books and stuff I've seen call it "cancer's gift" and while I wouldn't go that far, I am really thankful for the really good things in my life.

--Katie

In case you're interested, here's a look at just how many pills I take per day. Not pictured are any of the pain killers, stool softeners or sleep aids I use on occasion. I'm happy to report that my stomach has gotten a lot better during the last few days and I haven't needed much for pain. However, the steroid I'm on (still Endocort) keeps me sleepless and unsettled. I feel a bit like a junkie each night as I try yet another pill or pill-combination that might give me the relief I need without any zombie-like aftershocks in the morning.

During a recent clinic appointment, I got the results for my Chimerism test -- the blood test I took on Day +30 in order to determine how much of me is "me" and how much of me is my donor. I was shocked to find out that I'm 99% donor, a result I expected to come with cheers and confetti via medical professionals everywhere, but the nurse practitioner remained unmoved. Apparently, your chimerism percentage is just one bit of information within a long line of things that could be good or bad and -- since everything is different for everybody -- nothing can be relied upon to predict an outcome.

There I go looking for certainty again.

In other news, my basic blood counts are still holding, but my liver numbers continue to rise -- only slightly, though -- "not to worry," I'm told. My body is also doing better at holding magnesium and so they've lowered my IV intake and are starting to talk about trying oral magnesium again in a week or so. This last bit of news is encouraging: If I can get off the IV magnesium, they'll take out my Picc line and, since that eliminates one major source for infection, I'll be able to be left on my own for hours at a time.

Last week, the family -- Grandmama, G-Pa, Ian and Zach (and a sundry of friends) -- went on vacation to Bear Valley, leaving me at home with other friends to care for me. (I am hoping that one of the family members will post soon about the trip and share the fun with you all.) It was the longest amount of time I've ever spent away from Zach, so I missed him terribly, but he's getting so good at talking on the phone that it made the situation a whole lot better. I can tell you that he had a blast all around and was fascinated with the fact that prolonged water exposure wrinkles the skin ("Mama, my toes are wrinkly!"). As for me, I got to spend a lot of quality time with people I don't get to see that often, in a quiet house that stayed clean!

Lastly, you may have been wondering where I've been since my last post. You can all blame Kai for turning me onto Diana Gabaldon's "Outlander" series. It's about a woman from 1945 who accidentally falls back in time, awakes in 18th Century Scotland and falls in love with a hot Scottish highlander. They get in and out of trouble during six very thick novels (I am on number four), with a lot of soft core coupling and even more pledges of undying love. Oh, the things he says to her! In a Scottish accent no less! It's a total page-turner and a good read -- the first book "Outlander" was on The New York Times best seller's list, after all.

much love,
Katie

Today, I feel like a real person. I woke up feeling awake and refreshed. I greeted Zach in his bedroom. While he was deciding whether or not he wanted to get out of bed or not, I brushed my teeth. I returned, lifted Zach out of his crib and started the morning routine. I even put on a little of The Beatles to make it fun. Once dressed, we went downstairs in search of breakfast. Daddy made Zach cereal with fruit while I packed his lunch for school (OK, this is sounding very Dick and Jane ... but believe me Dick and Jane beats the pants off of cancer). Then, we all sat around the table with Granny eating our breakfasts, drinking our tea and watching some of the Democratic National Convention speeches on You Tube. Zach learned to say "Hillary Clinton." "Politician" was a little harder.

After Zach and Ian left for school and work, Ann and I waited for my weekly IV Magnesium delivery. Fortunately, it arrived early, so we drove out to Tennessee Valley and walked out to the beach and back (about 3-4 mile loop). I was tired and hot under all my sun protective gear by the time we got back to the car, but otherwise feeling good. It was good to get out of the house, see the ocean and move my body a bit. I have not had a stomachache yet today.

If every day were like today, I could see my full recovery laid out in front of me like a sure thing. But for now I'll just take the day.

Clinic yesterday went well. Three great things: 1) I only have to go to clinic once a week now. 2) I can go into businesses "off hours" (as in when they're not busy). And 3), most importantly, I'll probably be able to get off the IV Magnesium sometime within the next two weeks, which means no more PICC line and no more 24-hour babysitting. Not bad for Day +70.

Although I'm feeling physically better, I'm still riding one particularly wicked emotional rollercoaster. Like Monday, I was just sad. "Why am I sad?" I wondered. I don't know -- I'm just sad. Then this morning, I wake up elated and jump out of bed like Richard Simmons to get the kid ready for school ... Then just twenty minutes later I'm sobbing into my oatmeal. I know it's a combination of all the drugs, situation, etc., but it's still one hell of a ride. If I have learned anything about how to handle it it's this: If you are having one of those sad moments, it's much better to just find a place to cry it out. It never lasts as long as you think and, it's true what they say, you'll feel better for it. Holding it in hurts worse -- and for longer.

Lastly, tipping my hat to the bright side, here's a top ten list of the best things about having cancer:

1. I am thinner than I've been in years and am still encouraged to drink chocolate banana soy protein shakes and other high calorie foods.
2. Since I am bald, I have no hair care regimen (what's a brush?). I can be showered and ready to go in twenty minutes flat.
3. I have lots more time to read.
4. With my many wigs, scarves and hats, I am a woman of mystery.
5. I had this terrible Planter's wart on the bottom of my right foot; it is gone -- the chemo must have blasted it away.
6. I have not had to shave in months.
7. I have a temporary handicap parking pass.
8. My skin looks & feels really smooth, considering it all died and came back again. I guess it's cancer's take on the "rejuvenation" facial.
9. When I am feeling bad or I can't sleep, I always have a little pill that can make it better.
10. Since it's summertime in Marin and hot, it's actually a good time to be bald. How many of you can just whip off your hair? I think not.

cheers,
Katie