Katie's BMT Updates

Time for Phase II of Operation Cancer-Free Katie. I've been home for three days now and, although it's wonderful, it poses its own challenges. Since I am still really immune-suppressed, I am sort of on house arrest. Public places are off-limits to me, as well as kids with coughs and runny noses (which means I can't quite hug and squeeze Zach like I want to at the moment) ... I can go to clinic and I can go home and that's about it.

I CAN, however, walk outside (as long as it's not too sunny) and have enjoyed walking part-way up Ring Mountain with Marlene after dinner. Moments like these I'm surprised how good I feel ... but the tide can turn just as easily and I find myself horizontal and nauseous, watching still more episodes of "Sex in the City."

I had my first clinic visit yesterday, which went really well. My blood counts are all really good and the only supplement I need is magnesium, which Ian administers by IV every night through one of the tubes sticking out of my right arm (officially, it's a double "pick line" for easy access). Since we're on Day +16 out of the critical first 100 days, I'm hoping for 84 days of smooth sailing, but my Nurse Practitioner says I can expect some form of GVHD (Graft vs. Host Disease) around Day +30. GVHD can be mild or severe and usually comes in the form of rash, gastro-intestinal distress or liver problems ... and the weird thing is that it's better to have some GVHD than none (it's evidence that the graft is doing its job and killing the cancer). I am hoping for the rash. Let's all put that out there.

It's also a little nerve-wracking being away from the hospital. Take yesterday, I start getting these terrible cramps ... and I start thinking, "Uh-oh, what is this? Do I have GVHD already? Is it serious?" and, because all of you who know me know my tendency toward worst-case-scenario, "Is this the end?" Anyway, a call to the clinic and a prescription for Vicadin later, I'm horizontal and watching "Sex in the City." Having to tune into and monitor what's going on in my body like this is my worst nightmare. It was much more reassuring to have the nurse come in every couple of hours, take my temperature, blood pressure, etc. and say "You're OK."

Has it been 84 days yet?

You might want to know what I've been doing for fun through all this ... I'm making the most of my baldness, of course. I already have a selection of groovy wigs, but yesterday I had Marlene stop at my favorite wig store (Helen's Wig on Divisadero) and purchase a cotton candy pink wig, which I love (picture to come). Zach just loves it. He says, "Mommy, put on your new pink hair!" (he doesn't like to see me bald). Too bad this isn't Vegas.

Some of you have asked if you can visit and the answer is yes, as long as you're healthy and you leave your kids at home. I have clinic on Tuesdays and Fridays, but otherwise I'm likely around. Feel free to keep those emails coming, too.

much love,
Katie

I've seemed to have fallen into some kind of holding pattern ... I get up, I feel good and go about my morning business ... pills, tea, breakfast -- and new additionally -- making Zach's lunch on school days. (Slowly resuming that role of Mom!)

Soon as the morning rush quiets down, I take my shower, which is a bigger deal than it should be. See, I can't get my Picc line wet, so I carefully wrap it in Glad Press n' Seal and then tape up each end with flexible tape. Even so, I can't let this wrapped limb in direct contact with water, so I hold it out stiffly while I attempt to wash myself entirely with my left hand. It takes awhile ... and furthermore, it's a lot harder to shampoo a bald head than one full of hair ... With nothing to keep it from sliding down your forehead, soap just gets in your eyes. I'm definitely open to tips from veterans on a) a better way to cover my Picc line in the shower or b) how to not get soap in your eyes when you're bald.

After shower, I get dressed. Who shall I be today? I am definitely enjoying the wig collection. I have at least seven different looks. Zach's daily question is now "Mommy, what hair are you wearing?" Followed by, "Mommy, wear your PINK hair" (still his favorite). Today I wore my trailer trash long blond wig with clips. Fabulous. I am still planning on getting some pictures up here soon, so be patient.

About now, I'm starting to feel queasy, but I usually manage to get a load of laundry in the washer and make the bed. Time for an Ativan and some horizontal media time.

I finally finished "Sex in the City" (very inspired by Samantha's choice to embrace her breast cancer baldness with myriad of wigs as well), which left me with that sort of sad feeling you get when you leave good characters behind. Thank goodness for "Footballer's Wives," though, a recommended British soap/drama that is just the right sort of dishy and trashy I didn't know I was craving. Someone's actually in a coma, there's a scandal, secrets, a dirty nurse and everyone is sleeping with everyone -- and that's just the first few episodes. (Thanks, Amy!)

Also got to give a great shout out to "Eagle vs. Shark," a film from New Zealand starring Jemaine Clement of "Flight of the Conchords" (whom many of you already know I love, love, love). It's definitely a Napoleon-Dynamitesque film, about a boy and a girl who fall in love and do soul searching under bizarre circumstances.

Lately, I always have grilled cheese for lunch and then I play with Zach, read him some books and put him down for his nap. Then I do a little laundry rotation before I either take a nap myself or have more horizontal time.

All this being-at-home time means I am very caught up on laundry for the first time in my life, although I still can't seem to get past my propensity to have at least one clean basket left unfolded at the foot of my bed.

Late afternoon, I get my IV magnesium, have dinner and go on a walk ... then bedtime. Pretty much my day in a nutshell. Tomorrow I have clinic, so I should be able to post some "real" news or at least "data," so until then ...

--Katie

How does everybody like the flowers on the new page header of the blog? They're a side effect of Ian making this blog viewable on the iPhone. Ah, how I love a man who putzs with technology ...

I promised I'd write after clinic on Tuesday, but I didn't, didn't I? I'll make it up to you by writing after clinic today: My nurse practitioner said everything is "perfect" -- she actually used the word "perfect." Of course I don't feel perfect, but that's actually normal. Also normal is the funky body odor I've been emitting ... Pungent and disgusting ... It's the kind of smell you scrub off in the shower only to emerge, sniff and, ugh, there it is again, though faintly. Fortunately, no one else can smell it (so they say), but it drives me bananas. I was very relieved to find out it's temporary -- due to the drugs, mostly. I feared I was taking on the scent of my donor or something else equally creepy.

(Oh, but I did promise to bare all ... )

I also found out that the hot flashes I've been experiencing (perfectly fine one moment, then, whoa! Take off the wig!) are probably menopause. Hey, why not? Bring it on. The nurse practitioner suggested some herbal remedies, such as Evening Primrose Oil (now that sounds elegant, in an aging-gracefully-sort-of-way) and Black Cohosh(?). So, all you sage women who have walked this path before me, what's worked for you? (Thanks to my friend, Charlene, I have found a solution to my cover-my-picc-in-the-shower problem -- the Dry Pro waterproof PICC cover -- so I feel it's worth asking!)

Fortunately, Zach is recovering from his cold -- and has even learned to cough into his arm (unfortunately, now Daddy is sick and so we can add "sleeping alone" to my list of maladies). He is darling as ever and very curious about what's going on with me. He seems unworried, though, which is heartening and he often plays out medical situations with his toys. The other day, I got to be the patient (imagine!) and he was Dr. Solomon (his Pediatrician). He had me lie down on the couch and told people when it was OK to visit me and used his little stethoscope to listen to my heart. "You are getting a little bit better," he said.

Good news! The nurse practitioner has said it's OK for me to go to an outside park with friends and children, as long as I stay in the shade and don't hug people under 12, so I think we will be planning some of these outings in the near future. I look forward to seeing many of you soon ...

Much love,
Katie

Sometimes it's hard to see friend's faces smiling at you from photographs,
Carefree, happy, content -
with everything you ever wanted, before cancer.
At least that's how it seems with the right compositional framing.
You remind yourself, others remind you, what you can't know,
What lies beyond a picture's borders.

You know you shouldn't want more,
(but you do)
You know you are lucky
(under the circumstances)
But every once in awhile an expose about a woman who has everything
stops you short and sneers "What if?"

Sometimes a burning behind both eyes,
is quelled with clenched teeth and a deep breath,
But other times there are tears,
Hot and frustrated.
The "you" you imagined isn't you.
You're someone else,
Someone without hair.

--Katie Zarling Buono
July 2008

Most of the time, I take things moment by moment and try not to think of the big picture, but sometimes something happens to bring it all into focus. I'm hit with the magnitude and seriousness of what I'm doing, start thinking about the numbers (15% mortality rate) and freak out with abandon. But there's no going back, is there? And, I didn't really have a choice, did I? As one of my nurses on 11 Long (when I balked at the amount of pills he was giving me) said in his thick accent, "You want to live, yes?"

What did it today was an email. I'm on a CLL list, which I casually scan from time to time. Today, a husband sent a message to the list saying that his wife had died, complications of a bone marrow transplant, mini-allo, non-related matched donor -- basically, just like mine. She was 40 years old (kinda blows the whole "but you're young" thing out the window).

I wouldn't have seen it, but it was the top message on the thread. Now I wish I hadn't. I hate it when reality sneaks up and hits you in the face like that.

But right now everything is fine. I still have my ups and downs, but the time I spend feeling good is increasing. Saturday, Ron, Ian, Zach and I went on a walk around Lake Lagunitas to visit Bambi's bench (for those of you who don't know Bambi Holmes was Marlene's sister, who died in a tragic car crash twelve years ago; the bench is an homage to her memory). The day was overcast, so it was the perfect kind of weather for me to be out in (I was sporting my new UV-protective hat and jacket anyway). Zach was so happy that Mommy was "out on the hike," because he usually just goes with Daddy. He held my hand and, every other step, he'd slide his feet apart like he'd slipped and say "Whoops!" then laugh his head off. I love the sound of his laugh.

I have to keep remembering and repeating moments like these and use them to stamp out the negative feelings and fear that creeps into my head.

--Katie

I went to clinic today and I'm still doing really well. On Friday (after I'd already updated this blog), the nurse practitioner called to inform me that I tested positive for CMV. CMV is a virus that about 50% of the population is already infected with and it lies dormant within the body. It's usually not a problem, but sometimes it can "reactivate" in people with weak immune systems, as it has with me. Since this is something they expect (especially with me, since it also happened when I was getting Campath) they test for it all the time. That way, they catch it early enough to snuff out with drugs before it even gets going. What's an extra four pills a day, eh? The down side is that the new drug -- Valcyte -- can also make you neutropenic (let's hear the collective groan). Today, I found out I'm borderline, so I had to get a shot of Neulasta -- a longer lasting Neupogen -- to stimulate my white cell production and keep me from falling into the no-fruit-and-vegetable zone. And why, may you ask, am I calling it a good day?

Turns out that it all is just a state of mind. The nurse practitioner still says I'm doing really well. Also, my Dad's old doctor stopped in to say "hello." It helped to have him go on and on about how well I'm doing. In particular, he said I may have "set a record" for getting out of the hospital early and that bone marrow transplants "work especially well on CLL." Those are the kind of comments I can take to the bank.

Friday I have my first Chimerism test, which will analyze my bone marrow and tell us how much of me is "me" and how much of me is my donor. We probably won't have the results for several weeks, but it's a milestone nonetheless.

I'll end today's post with my current favorite Zachism: If you ask him where the devil lives, he replies, "in the details" in this why-of-course sort of way. He got it from his G-pa, of course.

--Katie

I feel my Father everywhere. As my husband and I walk down the hospital hall, past the creepy painting of the severe-looking woman to the elevators, I feel I am falling backwards. The world is blurry on both sides, like when spaceships move into warp-speed. I am trying to get to a part of my brain, a memory, I want to tap in and reach it, taste it, smell it, be there, but it's just out of my reach, fingers just brushing the tail of a fleeing cat.

Blinking once, hard, I remind myself that it's my turn. I try saying it in my head, "This is my bone transplant. I am going up these elevators and not coming down for weeks. I am not a visitor." I picture my husband, my brother, my son walking gingerly down the same corridor, but going the other way, out into the world, their backs to me, their voices light chatter floating on thick hospital air.

Standing in front of the elevators, I get a momentary flash. I have the carafe of Peets coffee and newspaper that I brought every other morning or so on my way to work. I'm balancing it all in one hand and pressing the button for "up." So casual.

My husband and I board the elevator and ascend to the eleventh floor, "Eleven Long," as it's known. When the doors open, I'm reaching again, back in my head. I catch a glimpse of my Dad sitting up in bed, reading, looking cheerful, eyeing the coffee in my hand. I never did understand how he stomached it, straight up, black.

My room is different. It's on the other side of the ward, with a better view. I sit up in bed and I don't feel cheerful and I don't want to read anything. There's something on my right, I can't see it, but it's taking up space. I feel peace filling my body, which is unusual for me. It's like a warm, reassuring hug. I don't even believe in this kind of stuff, but at that moment I know he's there, standing with me.

Many months before he died, but when he knew he was going to, he told me he was glad he wouldn't be around to see me suffer through my bone marrow transplant. He said no parent should ever have to do that. Yet he came and he stayed with me ... until I didn't need him anymore.

--Katie Zarling Buono
July 2008

It's Day +33 and I have my first signs of Graft vs. Host Disease -- and, since the nurse practitioner said she expected some around Day +30 -- it's right on time! For the last three days in the shower, a red and patchy rash has appeared all over my chest, only to disappear once I'm dried off and the steam fades. I dismissed it as some sort of heat thing. Then, today, I'm sitting in clinic and I start to itch all over my chest, my arms and the back of my neck. I go to the restroom and, sure enough, the red, patchy rash is back -- and I'm not in the shower! I go back to my seat and try to play it cool, because really I'm not sure what I'm seeing. Then, a nurse I know pops her head in to see how I'm feeling, points to my chest and says, "Oh, a little GvH, eh?" I am thrilled by her confirmation of my own suspicions (remember? I said I wanted the rash. Thank you, thank you, thank you!). When the nurse practitioner sees me, she agrees with the nurse, although she says it is "mild" and "not enough to biopsy, but definitely looks like some GvHD." OK, so we don't know for sure, but we definitely have good reason to believe I have Graft vs. Host Disease, in the form of a mild rash on my chest, neck and arms (not even my face -- there is someone answering prayers, here). Horray!

(OK, I just cheered for an unsightly, itchy rash on my chest. Hmmm.)

But wait, you say, Graft vs. Host Disease -- that sounds scary -- why am I so elated? Because, as some of you may recall, a little bit of GvHD is a good thing; it's evidence that the graft is working, taking hold of my body, winning the war, so to speak. Too much GvHD, however, is bad. I know, it's confusing. But so far, I got it just right.

Unfortunately, GvHD also comes in forms much more feared and detested, specifically gastro-intestinal distress and/or liver problems. I have to admit that I am a little worried about both. Lately, I have had some crampy bowels and frequent movements of said bowels, to the tune of five times (yesterday) and twice (so far today). The nurse practitioner said it could be the oral magnesium we introduced on Saturday, so I'm to stop it and see if that helps. Also, my Alkaline Phosphate -- one of the tests that monitors liver function -- is up. The nurse practitioner ticked off a number of reasons why that could be (other than GvHD), but also said "We'll have to watch that."

I am trying to remind myself not to worry, that they have ways of dealing with these things. That even if, God forbid, I end up with the trifecta of Graft vs. Host Disease symptoms, I will be OK. After all, I have youth, medical science and all of you on my side. Right? Right.

That's the physical update. Now, let's slide on over to the more emotional side of my day. Before I even saw the nurse practitioner -- heck, before I even had my blood drawn -- I had my first I-want-to-throw-dishes moment. Going to clinic is always an ordeal. A typical appointment consists of a blood draw (one room), vital signs (another room) and about a 10-15 minute visit with your doctor or nurse practitioner (yes, another room entirely) -- with a lot of waiting inbetween. A typical appointment lasts three hours (not exaggerating). I am usually prepared for this, bringing my very large bag containing book, magazine, tea, snacks, etc. I am patient, knowing that there are people ahead of me, people with sometimes unforeseen issues and/or complications. But today, all in a moment, I was just sick of it. I wanted to stand up, rip my wig off (the pink one, today) and storm out of there. And I realized, that I wasn't just mad at the clinic, I was mad at the whole situation. I hate not being able to go see the new Batman movie! I hate missing poker night with friends! I hate it that I'm not the one who drives my kid to school or play dates! I hate that I can't even pick him up and carry him around without getting totally winded. It sucks. (This is where you all get to see that I am not always "a good sport," "taking things well," "brave" or otherwise. Sometimes I am just a whingeing cancer patient.)

Well, the good thing about those moments is that they pass. Now that I'm home, I'm feeling much better -- especially since I found more "Footballer's Wives" waiting for me in the mailbox. See, I've found that one of the best things you can do to make yourself feel better while you're fighting for your life is to watch someone else ruin their own on TV!

cheers,
Katie

Katie is being very generous in allowing other people to play with Zach.

Ian often takes Zach to school on the bike. Sometimes Zach doesn't want to get in the car at the end of the day, so G-pa and he walk the three blocks home which will take about an hour. They stop for blackberries.

On Wednesdays, Zach doesn't go to pre-school, so we usually have an adventure on those days. This picture is at the Discovery Museum where Zach became a skunk. Katie and Ian had dressed him in the finest garments as we were meeting Ava at the museum. Ava is three (an older woman). When we got home and after nap, Katie and Zach hung out together. He was one happy boy.

We have three generations living together. It's sort of Laura Ingall Wilder meets John Stewart. As a grandmamma, I dream of the perfect house where this could continue when Katie recovers the life she wants. We decided the house would need a kitchen with two entrances.....one for a private meal, one for a friendly public feast.

We are grateful for all the friends who have been eager to lend a hand.

Lately, a very bright and beautiful yellow bird has been visiting our front garden every morning. Today it flew around back and took a swim in the birdbath. Katie and Zach watched it together this morning. Zach is not surprised when bright yellow birds splash in the birdbath. It delights him, but he does not think it is extraordinary. That's our boy.

--Grandmamma

Zach loves my pink wig. "Be Pinky!" he often demands. Lately, I don't like to wear wigs because it's just too darn hot. Most of the time I wear cotton caps and the hats Kit knitted for me out of yarn spun from bamboo. Sometimes I just go bald. Zach has gotten used to that, too. I have not. I catch myself in the mirror and I think, "Ah, Buddist monk," except I am wearing the wrong clothes.

I went to clinic today. I still have the GvHD rash. In fact, it is a bit worse. For some reason, it always looks more sinister when I'm sitting in the appointment room. Today, the nurse practitioner contemplated putting me on Prednisone. "Is that the one that makes you fat?" I asked. When she answered in the affirmative, I got a little panicky. Give me the itchy rash, loads of drugs, the bad taste in my mouth, the weird body odor, the baldness, etc. but, please, please, please not the moon face! Luckily, she called in a doctor who disagreed, saying we'd stick to the cream for now.

Also, my liver numbers were slightly lower today, which indicates that it's probably due to the many drugs I'm taking and not GvHD. That's very good news, especially for me. (Those who know me well know that I have a thing about my liver; it's where my father developed his fourth and final cancer and thus I am superstitiously paranoid.)

All in all, a good visit ... Even my platelets are up. I am feeling really good ... Virtually no nausea in two days ... and my energy level is improving. Emotionally, I am feeling a little more frustrated, but I think that's because I'm feeling better and want to do more. I forgot to ask just when I will start to gain some more "privileges," but I know it will probably be at least a couple of more months before I'll be allowed to venture out and do more things.

OK, Marie asked for a top ten of the movies I've seen lately. I'm including television shows, because I love to get series DVDs, too.

1. "The Wire" -- I haven't seen this show in awhile, but it's the best show on television, my favorite of late. The New York Times said something like "it's the closest television has ever come to the novel." The series focuses on various agencies in Baltimore -- the police department, the Mayor's office, the school system and, of course, the drug lords and minions -- depicting how they interact to play "the game," while cynically exposing their wicked similarities.

2. "Mad Men" -- OK, I saw this awhile ago, too but it's still worth mentioning because it is great television and season two is starting Sunday on the AMC channel. Set in the 1960s, the series focuses on an ad agency and its executives. I could write pages about this show, but suffice it to say that it's a complex drama with great character development, awesome costumes and sets. You can also read about it everywhere. It's getting so much press right now.

3. "Flight of the Conchords" -- I also saw this HBO series officially "before transplant," but it's got to be in my top ten, considering I've never laughed so hard in my life. Bret McKenzie and Jemaine Clement, two New Zealanders, have come to New York City to make it as a "band." Their deadpan, often ridiculous interaction coupled with the tunes and absurd lyrics riddle every episode ... I'm in stitches every time I watch! (Warning: This is one of those things you either love, love, love or maybe not so much, so ... )

4. "Footballers Wives" -- British TV drama that I've mentioned before and will mention again. It's just pure trash, but the kind of trash you can't wait to arrive in the mail. In just the first two seasons, there has been two people set on fire, a nurse molesting a coma patient, a unisex baby, a lesbian encounter and countless betrayals and infidelities.

5. "Secretary" -- A lawyer and his secretary (recently released from a mental hospital) develop a unique relationship. She's into self-mutilation. He's an ego-maniac and control freak. You do the math.

6. "Eagle vs. Shark" -- Totally weird indie film (think "Napoleon Dynamite") starring Jemaine Clement from "Flight of the Conchords." It's a romance of sorts. Two misfits, she has a crush, he has demons from his past, including a vendetta with a paraplegic.

7. "The Apartment" -- A 1960 classic starring Jack Lemmon, Shirley McClaine and the dad from "My Three Sons" (Fred MacMurray). It's a love triangle: company man falls for girl, girl is already involved in adulterous relationship with company man's boss. I don't want to give anything away. I'll just say the circumstances surrounding the plot prove hilarious.

8. "Swingtown" -- New series on CBS set in the 1970s. Three sets of neighbors, a set of swingers, a pair of straight-laced folk and another couple in the middle who are in transition. It's fun watching just for the seventies culture references. Do you miss fondue? I sure do.

9. "Sex in the City" -- HBO's hit series starring Sarah Jessica Parker. If you don't know about this show by now, check to see if you're still living on planet earth. Honestly, this show would be higher on my list if I hadn't seen it before, but still it got me through a wicked hospital stay, so cheers!

10. "Ridicule" -- To better his homeland, a poor lord travels to Versailles to seek help from the King. He tries to woo the court with his good ideas for improving the land, but all the aristocrats are interested in is wit -- and the amount you can dish out to defame your opponent. In French.

--Katie

Just a quick update to tell you all I haven't been feeling good and thus haven't felt much like writing. It started Saturday evening, with sharp abdominal pains after dinner. I thought maybe I'd tried to eat too much. I contemplated calling the clinic, but opted to wait and see. When I woke up with cramps in the upper abdominal area the next morning, I had Ian call the clinic for me. The doctor on call determined that I was constipated and prescribed Miralax. The Miralax definitely produced results, but the cramps did not abate. By Monday, I am taking Oxycotin to ease the pain. Thankfully, it works well.

Tuesday, I go to clinic and the Nurse Practioner says, "hmmm ..." like doctors do. She doesn't think it's GvHD of the digestive system because I don't have any other of the classic symptoms: vomiting, diarrhea or fever. She ticks off a few other possible causes, which I can't quite recall exactly (thanks, Oxycotin) and sends me for an ultrasound. Since the ultrasound came up negative, I'm scheduled for a CT scan tomorrow morning.

In the meantime, I spend a lot of time lying down. Moving around intensifies the pain, so when I do walk, I do it hunched over like some henchman from early century literature. It's uncomfortable and perplexing. I am hoping we discover a cause -- and a treatment -- soon.

cheers,
Katie