Katie's BMT Updates

As you all know at this point, Katie is about to begin the process of getting a bone marrow transplant. We will be using this page to keep everyone up to date. There may be times when Katie's not up to posting updates, so you'll have to bare with the less eloquent ramblings of her support crew.

Contacting Katie might be tough for the next while. In general the best way to communicate with Katie will be email, but be warned that it may be a while before you hear back from her. Rest assured that she will be eagerly reading any emails you send her.

Well, thanks for the support we've already received from follks. It really helps to feel loved through this ordeal. Keep it coming.

cheers,
-ian

I'll explain it in Ian speak and intersperse few links to far more thorough explanations about terms and the transplant as a whole.

Katie is slated to receive a mini-allogeneic transplant. Basically it's a variation on what's commonly called a bone marrow transplant. Essentially they knock the patient's immune system out with chemo therapy and then take the stem cells (which are concentrated in the bone marrow) of a donor and introduce them into the patient. The goal is to have the donor stem cells replace the immune system of the host.
Before minis, full allogeneic transplants involved an extremely toxic level of chemo. What they recently discovered is that if you give a much lower dose of chemo, the donor immune system can finish off the remaining Leukemia with far less damage to the host.
For more details on how a mini-allo transplant works, check out this explanation.

The donor is anonymous but the details we are allowed to know are all encouraging. They are in their 20s and share 11 of the 12 currently known HLA markers with Katie which all points at a great match. For those wondering, we did test Katie's brother, Peter, to see if he was a match, but unfortunately no dice.

Why now? Unfortunately the last round of chemo (campath) never pushed the CLL into remission and at best it will give Katie 18 months between treatments. With every successive round of treatment, her body takes on more damage and the disease responds less to the chemo. The choice is to go ahead with the bone marrow transplant now while Katie is still strong and healthy in order to give her the best shot at getting through it successfully.

-ian

In a nutshell, Katie will be going into the hospital tomorrow, June 10th.

Week 1 - Pre-transplant stuff. Katie will receive a round of chemo therapy preparing her to receive the transplant.

Week 2 - Transplant. On the 7th day (or so), Katie will receive the transplant. It's pretty uneventful apparently. They just hook up a bag of the donor stem cells to Katie's IV and that's about it. This is typically called 'Day 0'.

Week 3 & 4 - During this time Katie is still in the hospital recovering from the chemo and getting used to the drug cocktail employed to keep both her and the donor's immune system suppressed.

Coming Home! (weeks 5-14) - After about 4 weeks in the hospital, Katie will be stable enough to be released from the hospital. She will be staying at my parents' house with Zach and I. For the first 2 months staying at home she will remaining somewhat immune suppressed. As a result, no one with even a hint of a cold will be able to visit with Katie. She will also be on a restricted diet, often referred to as the neutropenic diet.

Weeks 15-45? - After the first 100 days, they continue to reduce the immune suppressant drugs and Katie will slowly regain a semblance of an immune system and as a result some normalcy like the ability to be in public places. That probably won't happen in the first six months though.

As with some of the other posts, my explanations are clearly in layman's terms. If you would like a more thorough description of CLL, treatments, and related research a great resource is clltopics.org.

cheers,
-ian

Well, after many hours of pre-admissions tests and procedures, I am finally sitting in my all-too-typical hospital bed. There isn't a private room available to me yet, so I am sharing a room with a great view and a roommate who watches TV with the sound up (thank God for headphones). I am also starting to feel a little like a 9-5 secretary for the patient who previously had my bed ("No, she's not here. No, I don't know where she is/what happened to her ... You're going to have to call the nurse's station ... Do I happen to have that number? No, I don't ... I'm just the next patient ... Yes, thank you. Good-bye.")

I hated saying good-bye to Zach and I miss him terribly. I have already talked to him twice on the phone and blown him a good night kiss out the window. Zach seems to be taking my departure really well, though ... thanks to advice we got from Kristy's friends Noelle and Lele, who run a child development practice, symbiosf.com. He's going to visit for the first time tomorrow. I can't wait!

Not to waste any time, they are starting chemo tonight (from what I understand, schedules can get tight when you're working with a donor). I'll get to receive it through my brand new catheter (which I got inserted into my jugular sans drugs, yikes!) sometime between now and midnight. For now, though, I'm just enjoying my last few minutes of feeling good.

--Katie

They have this creepy Battlestar Gallactica way of counting down the days to and from your Bone Marrow Transplant: Day -7, Day -6, Day -5, etc. until you get to transplant day, which is ominously "Day 0." Then, you count upwards Day +1, Day +2, Day +3 and so on and so on.

Well, today is Day -6 and I got chemo all day long. Last night, I had a visit from an old friend, Fludarbine, a chemotherapy drug I've taken before and, yes, it made me nauseas, but nothing that a little Atavan couldn't handle. Late morning, I started the Antithymocyte Blobulin, which is special drug made from rabbits (cage-free and organic, I'm told, snark snark). The medicine itself isn't half bad and, fortunately, I didn't experience any of the crazy side effects they warned me about. But the pre-drugs knock you on your butt! I was out cold for like, three hours, having crazy dreams about turkeys, old college professors and paraffin wax ... You know, really weird-i-am-the-director-of-a-late-night-film-for-ifc-channel weird. You know, Escher, Dali, Fellini weird, though not as arty. Anyway, it also wasn't a sound sleep, because the poor nurse had to rouse me from my pool of drool roughly every 15-minutes to take all my vital signs and make sure I wasn't having one of those horrid reactions. Each time I woke, the look on my face must've scared her because her brow would furrow with worry as she listed off a laundry list of potential ills I could be experiencing. "No," I say, "Don't worry it's I am dreaming about turkeys that seem to know Chaucer better than me."

Later on, as I pulled myself back to reality, I took a walk ... 20 rounds around the leukemia floor. I got really sad missing my dad ... Just being here brings up so many memories. I think I even remember what room he was in and, thankfully, they say I'm being moved to another room on the other side of the floor ... that side has a view!

My roommate also got to go home today and, at least for the moment, I have the whole place to myself.

Best of all, Zach came to visit today. He didn't get to see the drug dispensing robot (bummer) but he did get to play trains with me on my bed. I had even bought him two new characters, Diesel 10 and Lady, so that he could act out the story of the Magic Railroad. Then we watched one Thomas Train video before he had to go. We had so much fun and I was sorry to see him leave.

Thanks so much for all the phone messages, blog posts and emails. All your words and encouragement mean so much ...

Love to you all ...

Katie

Zach came to visit and we played trains together ... It's so much easier to "make it talk" when he's not around that much ... a kind of take off on the old saying "Absence makes the heart grow fonder," I guess. Although I can't fathom feeling fonder of this one.

Tonight they are adding a third drug to the mix -- Busulfan. It's the most toxic, scorched-earth-type chemo I've had to date. I get one dose every six hours for eight doses, on top of the nightly Fludarabine and daily Rabbit food. How am I even still walking around? Definitely I'm finding it tough to concentrate, doing things like reading the same paragraph over and over. Early this evening, I also started getting the jitters. But I was still able to go 20 laps around the floor (walking, with my trusty trolley in tow) and take my regimented two daily showers (apparently, Rabbit food seeps through your skin and can make you itch).

Ian's been really great at taking care of me, too ... Doing things like bringing me Banana Creme Tart and Ham Quiche from Tartine, bringing me the shampoo and conditioner I forgot and, of course, bringing the boy. And, of course, getting the boy to blow me good night kisses from the backyard, across the ocean, through the city to my hospital window. Smack!

--Katie

As some of you know, I've been sharing a room here at UCSF since I got here four days ago and, since I'm having a bone marrow transplant, I'm supposed to have my own room. Well, I got trumped out of a single room with a view of the Golden Gate Bridge just yesterday and then started having this nagging fear that I was going to get my Dad's old room, number 1122. Ian urged me to tell the nursing staff, but everyone knows how I hate to be "that guy" ... Well, it turns out 1122 came up next available, but someone had put a note in my chart against the room (thanks, bebe!) and now they're doing some extra shuffling so that I don't have to sleep amidst the ghost of my Dad's experience any more than I already am. I am so grateful.

--Katie

Today seems to be mimicking the weather. Katie woke up from her nightly ambien induced haze to a view of soupy fog and a touch of nausea. Thinking it would help, Katie forced down some oatmeal which only made her gut feel even worse. For the next few hours the fog slowly abated, but just wouldn't go away all together. Around two o'clock she had a slight fever which the staff quickly addressed with antibiotics. It's four o'clock now and the fever is down, cultures are off to the lab and everything is under control. Looking out the window though, the fog is rolling back in and Katie just got another round of Benadryl and prednisone prep for her final round of rabbit food. Looks like it's gonna be pretty foggy here tonight.

On the brighter side, Katie finally got a room of her own last night. It's located on the north side of the floor with a great view spanning from the Golden Gate Bridge to downtown San francisco. We were in the new room five minutes and she was already making plans to replace the faded artwork with a Flight of the Conchords poster, replace her hospital attire with cloths from home and setup a little stereo so she can listen to the Giants games...heh, my girl even knows how to do hospital visits in style.

-ian

Last night G-Pa, Zach, and I went to visit Katie. Ian described perfectly how to navigate the hallways of the two hospitals to find Katie's room. One part of his description--the butterfly picture and the very scary portrait--was odd, but I knew we were going the right way when we arrived at that point. Zach led the way, wearing his fireman's hat (backwards is the preference of style). When we got off the elevator, Katie was at the far end of the hall, walking toward us with her medicine tower in tow. Zach ran right to her which is precisely what we expect of our firemen. There was no delay in Zach's ascent to the bed where Katie and Zach played trains....I think Katie was Diesel 10 and Zach was....Yikes, I can't remember...it was female, but it wasn't Emily. Anyway, there were lots of derailments, but then the other train weaseled an invitation for a date out of Diesel 10. Diesel 10 said he had never been to a restaurant before, but he was willing to give it a try. That brought up the idea of dinner, so I went out to pick up some food. When I returned, Zach had found the control panel for the bed. Naturally, Katie's first reaction was that Zach was going to be an engineer. I have no clue what he's going to be, but I am sure that he will score well on any literary allusion exams he might have to take as he already knows what an Oscar scream is....you know, that boy in Gunther Grass's Tin Drum who can break glass with his voice. Okay, so Katie had spaghetti and meatballs, which she didn't enjoy all that much, but Zach was willing to share his french fries. We had to leave before Zach could introduce me to the robot he keeps talking about. When we got home and after Zach put on his tractor pajamas, we went out into the blustery (Zach's word) outside to catch Mommy's kiss and to blow her one too.

--Marlene (Grandmamma)

Saturday night was the end of Katie's chemo. Thank goodness. The effects of the chemo are cumulative, so by the time Saturday evening and Sunday rolled around, Katie was feeling pretty crappy. That mostly meant nausea and general fatigue from the treatment and the drug cocktail they gave her. Today she's feeling a little better, but is still pretty sleepy.
On another front, we mentioned that Katie had the sniffles before. They're pretty much gone today. She had a fever last night, but hasn't had one all day. Finally, the cultures they took when her fever first presented came back negative on all counts. Hopefully we're though this bump in the road.

It's not all bad at Eleven Long though. As I speak Katie is getting a foot massage. Turns out that a massage therapist visits every Monday. Man, if you have to go through a bone marrow transplant, this is the place to be!
Also, Cami is Katie's nurse again today. All the nurses are great, but Cami is extra cool. She and Katie were joking after ten minutes. It happened to be at the expense of their respective husbands, but I'll gladly be the butt end of a joke if it makes my girl laugh.

--ian

P.s. This picture doesn't have anything to do with the post, but it's a cute one of the boy so we'll go with it.

Bone Marrow Transplants are often refered to using the anagram "BMT." Today I causally came across a list of other things that share that moniker:

* Benton MacKaye Trail
* Tianjin Binhai Mass Transit, rapid transit system in Tianjin, China
* Bachelor of Medical Technology degree
* Basic Military Training or Recruit training
* Billings, Montana
* Brooklyn-Manhattan Transit Corporation subway in New York City
* Subway (restaurant)'s B.M.T. sandwich, named after the Brooklyn-Manhattan Transit subway now stands for Biggest, Meatiest, Tastiest
* Bone marrow transplant medical procedure
* Biel Mean Time, the scale used by Swatch Internet Time
* BMT Limited, a UK-based international engineering and management consultancy
* BMTCSS, a Catholic High School in Toronto, Ontario
* Base Metal Thickness (excluding any coatings) in the Steel industry
* Bilateral Myringotomy Tubes
* Blitz Model Tecnica, Italian radio controlled car manufacturer

source: Wikipedia

You know there are those projects you embark upon in life with a sense of bravado ... Some of these things start out as bets with your friends, others are simply a lofty personal goal ... climb a big mountain, run a marathon. Perpaps it's a high dive, not so high, not so low ... and all your friends can do it. You climb the ladder gingerly, big smile on your face, big fear fluttering inside you tummy. You climb higher, your hands are getting sweaty and shakey, but you flash you well-watchers once last blast of toothy courage. Maybe they're even chanting. You don't even like rope bridges, you think as you creep toward the edge of the 40-foot drop.

Coming to terms with the necessity of this Bone Marrow Transplant has kind of been that way for me: I know it's something I need to do, something I want to show courage doing and something I can be proud of at the finish. For months and months, it's been something off into the distance that I can read about and carry a very distant relationship with. I hear myself say, "I am getting a bone marrow transplant" and I don't recognize my voice. It gets carried off by the wind and me and my companion are left looking at each other like "Wow, what was that?," especially when I look and feel so healthy. Denial works well for things you can't fathom or understand and it also allows you to get the most out of your life while the living is good.

But, unfortunately, denial doesn't work forever. As time edged closer, I started to prepare. I started to make narratives out of my hidden dreads, doubts and fears and find ways to make sure that I would always end up the victor, because that's how it has to be. And, of course, on the practical side, I also bought loads of cool socks with stickies on the bottom, clean underwear, special creams, etc. -- So much stuff that it's still not all here. (So much stuff I'm almost embarrassed to have it be here.) And, I started to worry.

Well, now it's time for my big show ... You might liken it to getting called up to the big leagues ... Everything's just different. All other places, people on the street drinking beers, macking burgers, the woman jogging on 5th Avenue, most likely they're not thinking about life ending today. But here in the hospital, it's just a fact. People live and die every day and they do whatever they can to save them, but people expire. I have never been able to handle that thought too well, but the doctors and nurses are great ... They take it in stride and, when they speak of such possibilities, it's very relaxed and natural. Most of the time, they're even cheerful. I'm in good hands.

I don't know if this post is quite going where I want. It's just I haven't written in a couple of days because I couldn't write. I was sicker than I've ever felt plus the drug enduced haze that usually accompanies these things. Then the fever ... They brought a chest-xray to my room in the middle of the night, they took cultures ... They put a sign on my door that said anyone who entered must wear a protective mask. I was scared and then I thought why did I do this? I mean, really am I fool enough to think I can make it? And then of course, I remembered all of you. I guess the point is that I really can't do this without you. Thank you for continuing to love an support me.

Keep the words of support coming. Even when I can't read them myself Peter and Ian read them to me, so it make me so loved at some very low times. When I'm feeling spry, I will write myself when I can.

And, yes, I will eventually get around to jumping off that high dive, but you might want to stop looking up ... You'll hurt your neck.

Much love,
Katie

Dear Body,

We have to talk. Things haven't been working out so well over the past six years, so it's time to cut some losses. Most notably, the blood and bone marrow. Yes, yes I know you've been trying, but let's face it, those geriatric lymphocyte cells who should die just aren't. They're just hanging around in the lymph nodes, talking about the ole days, crowding things up. How are the rest of us supposed to get any work done? In fact, if you really look at it, they're harming all of us, because the blood takes care and runs errands for every major organ in the body. Don't tell me I don't have a heart, heart ... I know what I'm talking about and it's been a long time coming.

And don't try to put this one on me, either. I've made plenty of effort as well. Remember vegetarianism? (sooo good for you). Exercise, indoor -- rock climbing and yoga. Exercise outdoor -- I ran a Leukemia/Lymphoma marathon in honor of my Dad and then a half marathon just 'cause. I was even inspired to learn to cook healthful food and appreciate foods in season by exposing myself to Local Farmer's Markets, Alice Waters, Thomas Keller and the like. Sure I have some vices. Bacon is good! Paté divine, especially when paired with a glass or so of fine wine. Oh, and cheese, cheese, cheese...

Then there were the chemotherapy treatments, two be exact. The first one, four rounds of Fludarbine/Rituxan bought us just enough time to have our son Zach. The second one, Campath, came about a year later and was showing signs of lasting merely half that long. So you can see, there aren't many options: I can continue to have these arduous treatments until there are no more and I'm too weak for transplant or I can go for it now. (You know what kind of person I am, body, so I betcha know what I said.)

Body, please don't cry. I know it's not your fault, it's not anyone's fault, really (unless you want to count Fat Cat chemical and policymakers who think "the environment" is somewhere you go on vacation). I know I've blamed/not trusted you in the past, but my reasonings have been unfounded. I'll try to be more forgiving for the rest of us left in the future, OK?

Here's what's going to happen: I'm sorry, body, but tomorrow the doctor's are going to introduce some new donor stem cells into us via tube. They are going to make war on the current, feeble blood cells and take over marrow production. Marrow, vital organs -- and that means you, too, skin -- please cooperate as much as possible and we'll be all fine. There may be some Graft-Vs.-Host (GVH) diesase, which is basically you all fighting over rights and territory and stuff. I know you can work it out. We have to. We have to see Zach grow up and Ian grow old, get gray and even more cantankerous. Goals worth achieving, yes?

I'm sorry, though blood. I sorry it's the only way that we can go on. There are a lot of people out there who love and need us -- and we need them. Fair enough? We've had fun times, and even though I've only know just one blood and bone marrow, you've been the best. Thanks! R.I.P., baby!

Zach and I went to visit Katie tonight. We brought dinner in a cooler, so we could eat with her. We also brought THE brown bag with extra clothes and pajamas. It goes without saying that we also brought Lady and Diesel 10. We parked on the floor where Ian had figured was the best place to park. I do not have a good sense of direction and usually think my car's been stolen if I park in a large parking lot. I asked Zach to remember that we were on the yellow floor, but he was having none of that sort of adult nonsense. We had just listened to Peter, Paul, and Mary singing Stewball (twice) and he was trying to figure out what exactly a race horse does. He tries to run faster than the other horses wasn't a satisfactory answer. The night before, we'd read a book in which a duck borrows a bicycle and one of the animals he rides by is a snooty horse who is not impressed with the duck's antics. But when a group of kids leave their bikes by the side of the farmhouse, there are enough bikes for all the animals and the horse tries one of them, looking pretty darn happy, even when the bike looks a little small to him. There is no tidy connection between Stewball and the bike-riding horse. Sometimes things just don't make sense. Zach insists on being picked up when we ride the elevator. We found Katie's new room (great view). She was eating dinner, so Zach sat at the foot of the bed with the table between them. I thought he was going to love the vegetable sushi I'd brought, but he wasn't impressed, nor did he care for Katie's noodles and meatballs. Katie brought out a present she'd made for Zach....a handmade seahorse (there's that horse again) sorcerer's wand on one side and a star on the other. It was made out of cardboard and glued to maybe a tongue depressor. (Katie, I might not have this exactly right, but it's right in spirit.) She explained that if she turned it one way, she could make magical things happen. So she showed him how she could hide behind it, even disappear and then whoosh! there she was again. He was transfixed for about 25 seconds and then decided that he should use the wand as a tennis racket and insisted that Katie play ball with him. They played what he called volleyball for a while, the invisible ball going back and forth, back and forth. Then he hit it across the room and he made me go get it. After I'd done that about six times, I introduced Zach to Buster the dog who would bark happily and retrieve the ball without my getting up. Zach liked Buster and Katie let Buster up on the bed when it was time to say good bye. She sang a song about a dog which made Zach start barking. When he and I were in the elevator going down, a nurse told him that everyone at the nurse's station thought there was a dog on the floor. She was smiling, of course, but Zach was not amused. I returned the smile, but I was holding him, THE brown bag, and the cooler, it was hot and crowded in the elevator, so I was not really amused either. When we got home, Zach didn't want to get out of the car because he wanted to listen to another round of "The Earth is our Mother." Finally the lure of seeing G-Pa was greater than the prospect of a night in the car seat, so we went inside where Zach immediately started drumming. I sang "The Earth is our Mother." It's pretty easy to sing, so G-Pa sang with us. It was getting late, so we went outside to blow mommy a kiss, but we also decided to sing the song to her. While Zach was drumming, a hummingbird came by. G-Pa started to take some photos, but Zach pulled him over to join us. Such a fine night and sad at the same time. Zach really knows how to bring you back to the moment, though. I was gathering a few lavender stems, taking in the beautiful night air and light when Zach announced "I need to go poop in the potty."

I'll leave the prose to Katie, but wanted to drop a quick note on where things are at. At around two o'clock Wednesday Katie received the transplant. There's no surgery involved, just a transfusion of donor stem cells. Over the next few weeks the donated stem cells will find their way to her marrow and replicate into a full fledged immune system.

Also, Katie has had a fever off and on for the past couple of days. They current theory is that it's related to the ATG, but it could also be a common cold or a reaction to the transfusion. Another round of cultures and time will help to clarify. Until then Katie is on a host of antibiotics. The doctors seem to be watching it closely but not very concerned. It sounds like it's typical to get a fever a few times during the process for one reason or another.

Rumor has it Katie will have a post shortly explaining the transplant in great detail so I won't steal her thunder. I mostly just wanted to let everyone know that it went well and we're onto the next phase.

cheers,
-ian

Bone Marrow Transplant sounds like such a big deal. It conjures visions from medieval times, like having each limb split down the middle and slathering some else's marrow in there like peanut butter. Still, others might think 1970s daytime soaps, where the “leukemia patient” is lying listless inside a plastic bubble, where no one can touch her. It’s always unclear just how the bone marrow got in or out of her and the bigger mystery is how her make-up stays so perfect.

Well, I’m here to answer all. The first bone marrow transplant took place in the 1950s and the basic procedure itself hasn’t changed much. It’s more like who they can transplant (unrelated vs. related donor), the better drugs available and the benefit of more than 50 years of history.

There’s never a “surgery.” First, a lot of research happens to find the right donor. It’s based on human leukocyte antigen (HLA) typing, which examines Chromosome 6, the location of many genes that control immune compatibility. For two people to be a good match for transplant, they have to have several alleles (markers within a gene) in common. Believe it or not, blood type doesn’t have anything to do with it! The best match you can have is a sibling match. The next best thing is highly matched unrelated donor – That’s what I have.

Once the research is done, the transplant is a piece of cake. On Wednesday, June 18th around 2pm, two nurses came into my room with a bag of stem cells. Quite frankly, it looked like a bag of tomato juice, a little more pink than blood. They checked and double-checked my name and information against the stuff they brought, hooked it up to the IV and then drip, drip, drip …

I tried not to think too much about the fact that I was receiving someone else’s stem cells – a stranger’s no less! But I have to say here that I am extremely grateful. If she had to go through half the paper work and physical tests I did prior to transplant, she deserves a medal. It heartens me to know there are still really good people in this world who will do something just for the sake that it will help someone else.

Afterwards, some of the hospital staff brought Ann and I some cake to celebrate my “second” birthday. Too bad I haven’t had an appetite for days! Then Ann stayed with me while I slept. At some point, I developed a fever, which was a little scary, but doctors now seem to believe it has more to do with some of the chemo I had earlier in the week. I also experienced some serious body aches. It felt as if the new cells were taking nutcrackers to my bones in order to get in and set up shop.

Now, both immune systems in my body are completely repressed while the doctors give me another chemo, Metotrexate. The Metotrexate will kill off any of my donor cells that are too aggressive. In three months, we’ll start to slowly bring the immune systems back on board and watch the sparks fly! (Or, as nurse Kristina says, “That’s when things get a little more interesting.”)

All in all, I feel pretty good today. I think that any of the ills I’m experiencing (nausea, headaches & fatigue) are largely hangovers from the mass-blast chemo I received last week. Me losing my appetite? Who woulda thunk?

--Katie

This morning there were two birds loudly singing and talking. At first I just enjoyed their pleasant chatter as I would listening to someone singing in Italian or French. Then I actually heard the words they were saying. The gray/white bird clearly was telling the bluebird that she understood that Katie would be away for a month and that nearly two week had gone by and she would have to continue to stay a bit more than two weeks. "I understand the family is in turmoil, they don't seem to work anymore and they get in and out of their cars alot",said the bluebird. Gray/white replied,"Yeah, three of them don't seem to be able to care for the little one. Oh don't get me wrong, they are providing for the little one but boy do they seem flummoxed. Imagine three of them can barely take over for Katie." Bluebird said in a stage whisper, "They all miss her but they are trying to give the impression that everything is really okay because they don't want her to worry." Graybird sang a soft sweet sounding lullaby and then quietly said, " All of them will be so happy when Katie returns to the nest."
Ron

Greetings from cell block 1159. It’s been nearly two weeks since I’ve been outside or even left the hematology/oncology floor! I am surprised that I’m not going more stir crazy. I’ve been keeping busy, though. Going for daily walks around the ward with my trolley (large medicine dispensing pole on wheels – a glorified hat rack) in tow. Taking showers, yes again with trolley, it adds an element of complexity to the matter. Looking at trashy magazines, watching TV and loads of movies. Getting poked and prodded and picked at intervals around the clock. I also take a lot of pills, so many and so many different colors that they could be mistaken for bitter-tasting Skittles. One of them, the Tacrolimus, makes my hands shake terribly. So glad I brought that sewing project!

Despite the discomforts, the doctor says things are going well. It’s Day +5 and many of my blood counts are hanging within the normal range. The best part about that news is that I’m not yet neutropenic, which means fresh fruits and vegetables are still on my plate.

Speaking of food, I still have no real appetite, but it no longer repulses me to eat. I manage most meals and only feel nauseous a fraction of the time.

Nothing changes how badly I want to be home with my family. But we’re rounding the half-way mark, so I’m keeping my chin up.

Fortunately, there's little to report, and what little there is, is all good news. Yesterday, I received my last itsy-bitsy dose of Methotrexate, a chemotherapy designed to knock down any aggressive donor cells. For the past week, my blood counts have been dropping steadily, but never far enough to require a blood transfusion. And, unless my blood counts plummet dramatically today, I'll also have managed to dodge Neutropenia, a condition defined by a neutrophil (special infection fighting white blood cell) count of less than 0.5. I am very happy about this, because as anyone who's been with me on previous treatments knows, Neutropenia equals no fresh fruit or vegetables, unless cooked. Yuck! The Neutropenic diet would be especially devastating to me now, as fresh fruits are about the only thing that I actually enjoy eating at the moment. (Yes, still no appetite. Can you believe it? How non-Buono/Zarling of me.) When Dr. Martin visited me yesterday, he was almost giddy about my progress, which makes me feel extra hopeful and even has me contemplating "life without cancer" (Wow! What's that like!?).

Today, I start Neupogen, a drug that stimulates the production of white blood cells. From what I understand, the drug will work first on my old immune system and then on the new one. It's almost as if they are getting conditioned for the big fight, where the docs slowly withdraw the immune-suppressant drugs, in roughly 2-3 weeks time. (Dr. Martin calls this "removing the sunglasses from the donor cells" ... Right now, we have them pretty much fooled into thinking that they are still in their host body ... he he ... so sneaky.) I can't help but wonder if I will be able to "feel" my old immune system duke it out with the new donor system ... It's also the part of the transplant that I am most anxious about, as it's pretty much the moment of truth.

Hey, and I still have my hair! I keep thinking that maybe I'll get lucky and not lose it at all ... But everyone keeps assuring me it will start falling out any day now. I have never worn my hair super short, so you can imagine how much I'm dreading going bald (I hope I have a good head!). However, in the spirit of "embracing the situation," I did purchase a pretty hot red wig and a cashmere cap for the occasion, so it won't be all bad.

Well, that's all for now. Lastly, I want to thank you all again for your continued words of support and encouragement and care packages. I want everyone to know how much I appreciate everything, even if I haven't been able to respond/thank you personally. I love you all.

--Katie

So I guess I spoke too soon this morning. My neutrophil count came back 0.87 and, although true neutropenia is 0.5 or less, the doc has decided to put me on precautions. Now I'm on the neutrophic diet (no fresh fruits or veg) and have to wear a mask every time I leave my room. Bummer!

On a positive note, though, I've been disconnected from trolley. Now I can walk around my room freely without getting whip lash every time I move out of range. This new privilege is really exciting ... Since I'm doing so well, maybe they'll send me home early? Oh, how I wish.

Speaking of home, Ian brought Zach to visit today. I got to cuddle him and stick my nose in his hair, breathing in that sweet baby smell. We played trucks. He charmed all the nurses. And, since Granny was here, too, he got to play "find the locomotive." It's a game where Zach pretends that he's a train by pumping one arm up and down, mimicking the motion of train wheels. Then, he "hides" (in plain sight, really) until Granny, playing the part of Roy the dog, looks for him. Every time she finds him, Zach erupts in laughter. It's hilarious the first 40 or 50 times.

Well, night is falling ... Check out the view from my window. Not bad, eh?

much love to you all,
Katie

Back tracking a little bit, here are me and my trolley, singing Zach "The Trolley Song." It's a lot easier to laugh at, now that I don't actually have to roll trolley with me everywhere I go. I'm actually looking forward to my morning shower, where I'll have the whole bathroom to myself!

Things really can change on a dime around here ... Yesterday, I got my shot of Neupogen, which gave my blood counts a little boost today. i even shot way out of the Neutropenic range, but the doctors have warned me that that will be short-lived. So today I eat fruit, tomorrow I eat over-cooked and processed foods. The Neutropenic diet has always seemed a little ironic to me: If you have cancer, shouldn't you be eating the healthiest foods available? Apparently not always.

Nurse Practitioner Mike stopped in to see me this morning. He said that I'm doing really well and, if I continue to do well, I might get to go home a week early. I am trying not to get my hopes up, because I know that anything can happen. Potential complications are a big part of this game and, wouldn't you know it, just two hours later I stepped on a potential land mine.

For the past couple of days, I've had some problems with my bowels ... I mentioned it to the nurse and, to my surprise, she took it really seriously. Apparently, every one carries this certain type of flora in their intestines, but when you're immuno-suppressed, it can sometimes get out of control. "We'll have to get a sample and send it to the lab," she said. Well, I can handle just about anything right now, but sharing my poop is a bit too much. And to make matters worse, protocol dictates that they put a yellow precaution sign on my door and everyone who enters has to wear this funky yellow paper robe thing, gloves and a face mask. Likewise, if I leave the room, I have put on the same get-up. The whole look is very Hasmat and screams "I am having diarrhea" to the whole entire floor. I feel terribly ashamed and embarrassed. Just another one of those hospital indignities.

Speaking of indignities, my hair is starting to fall out ...

--Katie

So I know you are all on pins and needles ... Am I cleared or not? The answer is that, yes, the quarantine has been lifted. The lab has proved that I don't have C-Diff ... It's just regular "loose stool," probably brought on by chemo and too many laxatives. Horray!

Despite the reprieve, I'm feeling a little melancholy today. My blood counts are headed down the toilet. In fact, I lost half of my platelets overnight. My red blood cell count is just two points away from a transfusion and my white cells keep bobbing in and out of Neutropenia. The doctors have told me to expect this, "This is your rock bottom," they say, but it's still scary ... What if they don't come back up?

It's all so surreal because, just an hour ago, I was doing my daily "laps" around the ward. I had my headphones on and I was cooking, feeling great. I think to myself, "I am so bad ass. This is going to be a piece of cake." After my walk, I take my shower and half way through, I feel sick to my stomach and a little dizzy. So much for "bad ass." I hit the call light and had the nurse bring me an Ativan -- the wonder drug that can make so many things better -- and I have to remember I'm a cancer patient. I am so sick of this already. I want to be well now.

--Katie

P.S. Keep the comments coming. I love reading them.

I've never worn my hair shorter than the "Dorothy Hamill" my mom made me get in grade school, so you can imagine how I felt about shaving my head. It's become inevitable, though. Strands of my hair are strewed all over the hospital room -- the floor, my pillow, the shower. Why did I think I'd be one of the lucky ones who made it through a bone marrow transplant with hair intact?

The day to shave my head has come. We've decided to let Zach in on the process so that maybe he will not get so freaked out seeing his "bald Mommy." Ian got out the clippers, while Zach sat on the bed watching. I tried to stay cheerful, "Look! Mommy's getting a new haircut." Zach remained stoic, curious throughout, but in the end, seemed OK with "Mommy's new hair." He even helped with the process by brushing my new do:

Initial reports say that I look more like my brother or maybe a butch lesbian. Fortunately, I have a "good head," no bumps or unsightly bad patches. I am thankful for that. In fact, I think I may have to take it down even shorter, because it's still itching a lot.

OK, now for the health update: My counts continue to drop. My overall white blood cell count is a whopping 0.7. I am firmly neutropenic and my red cells dropped to the point that I had to get an blood transfusion. Platelets are still going down, too, but hopefully my counts will start to go up before I need to get a platelet infusion. Overall, I am feeling pretty good and the doctors still say "things are going smooth," but I am anxious to see my counts go up again so I can go home.

Here I am in hot new red wig ... and here are a few more of my new looks.

--Katie

The picture above demonstrates how gracious the nurses have been with Zach. Today, when I called him at home to tell him my good news, he and Grandmama were playing hospital. Zach said he was the doctor and that Grandmama was just "a little bit sick." He has also taken to wearing the tie from my husband's robe around his neck and calling it his "trolley." Apparently, it's really cute, but even more importantly, the fact that he can work out his feelings in a play setting is really significant.

I know the Bone Marrow Transplant process is far from over, but I've cleared the first big hurdle and I see nothing but positive signs.

--Katie