Katie's BMT Updates

I didn't have a very good day today ... It's the 2-year anniversary of my Dad's death and I have to say it feels like a regular day -- except for the fact that everything is wrong. Leading up to today, I have been coaching myself, "It's just another day, nothing you need to get upset about" and "You know your Dad would hate it if you spent a day wallowing in his memory. Just make it a regular day. No big deal."

Well, I made it a day all right. I had a whole plan: Ian, Zach and I would drive into San Francisco for the Ferry Building Farmer's Market first thing, for breakfast. Of course, you parents out there know how hard "first thing" is to achieve and so it's 9:30am before we even get rolling. We park, take the circuitous route through a hotel with an escalator, glass elevators, fountains -- one that's the length of the hallway, bubbling and lined with rocks. All these things, of course, are fascinating to a toddler and it's starting to look like we're not going to get to the Ferry Building any time soon. As the minutes tick on, I get more and more raucous with hunger. I'm like a culinary version of The Hulk, "You wouldn't like me when I'm hungry." I suggest we speed things up a bit and Ian, who has seen the Culinary Hulk many times before, swings into action.

The Ferry Building and Farmer's Market surrounding it are terribly crowded, much more so than we had anticipated. So I take Zach to visit the enormous spider and Ian rushes off for food. He comes back with a delicious looking plate of Chilaquilas. I'm about to tuck into this rare treat of savory, yet not necessary healthful dish when I look up to see my oncologist standing there. He's got his one-year-old with him and she's adorable. We chat for a moment and then he says, "I can see you're keeping up your appetite." Slightly feeling like I'd got caught with my hand in the cookie jar, I wanted to tell him it's one-off, that at home I'm eating the diet of a Buddhist (OK exaggerating -- yet my diet is usually very healthy). But instead I say, "Yeah, I'm keeping my weight up." That and I promised that I'd been steering clear of the crowded areas. He went to go join his wife and I inhaled my Chilaquilas.

After breakfast, which is really more like brunch now, Zach wants to explore the pier. Time is running short and I have two goals left for this outing: walk and doughnut muffin & scone ("If you've never experienced the wonder of a [doughnut muffin] ..."). Sigh. I can feel my teeth sinking into one now.

But who can deny a kid his pier time? So we trek the length of the pier.

In the end, I got a short walk and no doughnut muffin or scone (because the stand had closed). These are pretty trivial reasons to get disappointed -- especially when you just got to spend the whole morning with your family -- but when you don't get out much, the silliest things start taking on this air of vaulted importance, like they are the Holy Grail or something.

Anyway, "[Katie's] Terrible, Horrible, No Good, Very Bad Day" continued ... Little things like Zach refusing to nap and me having to listen to him cry. The disappearance of the chocolate -- I know I hadn't eaten one in days, but I finally had a craving. Comic.

What you really want to know, though, is how I'm doing and I do have things to report. I had that Bone Marrow Biopsy last week and the results are in. At clinic on Tuesday, the nurse practitioner said that 4% CLL remains in my blood. Results for the marrow itself weren't in yet, but they should prove interesting. There was discussion on reducing or removing the steroids I'm on in order to stimulate the graft (and consequently make it more active and kill more CLL. The unfortunate side effect of this approach, however, is that it will also make me more miserable with the symptoms of GVHD). But luckily my oncologist isn't worried about the 4% and thinks we should wait. In the meantime, I win another bone marrow biopsy in about two months (the bruise I got from this one is very interesting ... It looks like a bulls eye). Oh, and my CMV has reactivated again, so I'm back on the Valcyte (+4 pills a day) and they've decided to stop the Cellcept (-4 pills a day). It's a wash -- I'm still taking oodles and oodles of pills!

You know, I know my day wasn't all that bad. I just miss my Dad.

much love,
Katie

P.S. Kudos to those who can figure which two popular children's books I referenced during this blog entry. A lame attempt of me trying to be clever ... but oh well. And I promise to write more often.

Today's photo doesn't really have anything to do with today's post; it's just a beautiful photograph of my son, Zach, navigating his way around the Bolinas/Fairfax ridge on Mt. Tamalpias. It makes me feel peaceful -- and peaceful is a tough commodity to get for some of us these days.

I had clinic on Tuesday and there's not much to add except that they found no evidence of CLL in my bone marrow. If you recall, the week before, they found 4% in the blood (flow cytometry, for those of you in the know) and the actual bone marrow results hadn't come in yet. Well, they're in and there's nothing. It's a good sign, but still not party-worthy for all the docs and nurses at UCSF. I am doing "just fine," they say.

All for now ...

cheers,
Katie

Today is my 37th birthday and many of you have asked me how I planned to celebrate. Well, under the circumstances, we decided to keep it a quiet affair ... Just us Buonos, Granny and Hilary for a quiet night in. Marlene was going to make one of my favorite meals: a special chicken curry served over rice. The best part is that it comes complete with all kinds of fixin's to sprinkle on top: chopped green onions, egg pieces, chutney, raisins, peanuts -- and of course - real bacon pieces. Marlene also made a Persimmon cake for dessert. MMMmmm.

But guess where I am instead? The hospital! Yes, yes, yes ... just when you thought I was past arm's reach of rotten luck, I end up in the emergency room with massive abdominal pain that I can only rate a close secod in severity to giving birth. A constant dull, aching pain, throbbing across my upper GI, just above the belly button, just below the ribs. It's also radiating to my back between my shoulder blades, stabbing pains, like knives. I am doubled-over, eyes wide and fixed on one spot. All I can think about is making it stop. Finally, after what seems like ages, someone comes with a couple of shots of Fentanyl. It takes the edge off, but less than an hour later the pain is back in full force. It's Diloted that finally does the trick. Ahh ... I can breathe again, stop gripping the side of the bed and maybe stretch out my legs.

Crisis abated, my thoughts turn to cause. I am thinking that I have massive GVHD of the gastro-intestinal tract. I am thinking that it must be a recurrence of my tummy troubles from a couple months back. But a CAT scan reveals an inflamed gall bladder and something the doctor calls "gall bladder sludge" (ewww ... gross!) or maybe even gall stones. "Not related to your bone marrow transplant, I think," the doctor says. Now I start to freak out a little because this is kind of how it happened with my Dad. After his bone marrow transplant, Dad turned yellow one day and doctors found a blockage in the liver of his bile duct that turned out to be Cancer of the Ampulla, a very rare treated-like-pancreatic-cancer disease. He had a Whipple surgery to remove the tumor, but it eventually metastasized and he died. Breathe, breathe. I do not need to draw comparisons, I do not need to draw comparisons, I do not need to draw comparisons ... I start to calm down. OK, this is my gall bladder -- not my bile duct, not my pancreas. And I didn't turn yellow.

The surgeon says I have to have my gall bladder out (thankfully you don't really need it). It could cause nasty infections in normal, healthy people -- but me -- I'm a super risk, all immunosuppressed and all. Further, they want to do it today. In the emergency room, I am visited by another doctor, someone from the leukemia ward and a surgeon. First, I need to get properly admitted, then some kind of special ultrasound and, finally, the surgeons and leukemia doctors have to have a pow-wow to discuss options. At 6:00am in the morning, it really seemed like I'd have my gall bladder gone by noon. But, now It's 7:00pm and I'm still waiting for the results of the leukemia doc/surgeon Pow-wow ... It seems late to me, but the nurses say there's still a chance it could happen tonight (really?). Just in case, I've been "NPO" (nothing by mouth) all day and I'm coming up on 24 hours without food or drink (just ice chips for me, baby). Sucks.

The good news is that I haven't had any pain medication since this morning and I have very little pain. The bad news is that my liver numbers are sky-rocketing -- obviously effected by my bulging gall bladder (the doctor says this is typical, but you all know how I feel about my liver).

Can you believe this? Yes, I still have my mouth hanging open in disbelief, too.

I'll keep you posted as I find out more.

much love,
Katie

Update 10/14/08, 10:00pm: So I'm not going to get my gall bladder out -- not yet anyway. Instead, I get a neat test called an "ERCP," where they stick a tube down your throat and look at things (this is the test my Dad got when he turned yellow... But I will not draw conclusions, I will not try to see patterns where there are none). In my case, they're going to check out my Ampulla, clear my bile duct & gall bladder of sludge and just generally try and find out why my liver numbers are sky-rocketing. I'm not really sure why the surgeons don't want to take my gall bladder at this time ... It might have something to do with the fact that I am also hovering near Neutropenia. Hey, when it's a party, it's a party.

Update 10/15/08 10:00am: Ian here. Looks like they are waiting to see what Katie's liver numbers do over the day. Most are coming down, but not all just yet. Also, they would rather have her neutrophils go up a little before doing the ERCP. Sounds like most of today will just be a wait and see day. Good news is that Katie got to eat some jello and broth. It's amazing what a little food does for the spirits.

Update 10/15/08 Noon: I get a Neutropil shot to boost white cells for ERCP procedure, which will likely happen tomorrow.

Update 10/15/08 1:00pm: Katie here. OK I just ate a popsicle, which started to reproduce the pain I was experiencing Monday night. There is something going on with me and I can't wait to get to the bottom of it. I am a little worried.

So I asked Katie to go through the recent pictures and pick one she enjoyed. There were plenty of cute pics of the boy, but instead she selected this one because, 'It looks like a donut'. Poor thing, Katie and food restrictions really don't go well.

So there's pretty much nothing to report. Katie is still waiting to go in for the ERCP procedure. This means that she's NPO which somehow translates out to 'Nothing in Mouth'. Word on the street is that the procedure will happen shortly, but I'm not holding my breath. On the good news side, her liver numbers have continued to go down which is a good sign. Also, after the Neupogen shot and platelet transfusion yesterday, Katie's Neutrophil and platelet numbers are up. These are all helpful for her going into the ERCP. We'll be sure to add another update once any results come back.

Also, a few folks asked when we can expect Katie to be released. There are still too many open questions to have a reasonable guess. The main thing is whether or not they'll remove her gall bladder during this stay or as a separate visit. The hope is to stabilize things enough to release her so that her the inflammation can go down before removing the gall bladder. The ERCP should answer many of these questions.

-ian

Well, I didn't think it was possible, but I have survived nearly four days "NPO" or "Without Food." Late this afternoon, I consumed my first meal: orange jello, Chamomile tea, beef broth and apple juice. It's what they call the "clear liquid" diet ... and it was delicious.

Next, I'd like a Root Beer Float.

Late yesterday afternoon, I had the long-awaited ERCP procedure. I can't say I remember much, but this morning, the docs reported that they found "many stones" and "much sludge." In fact, they found so much gooble-dee-gook lodged throughout my biliary system that they highly recommend a gall bladder removal sooner than later. In fact, it looks like I will stay in the hospital, where I can be closely monitored, while I wait for my gall bladder surgery on Monday.

The gall stone/gall bladder issue is actually very good news, even if it's initially a drag. You see, more than likely the gall stones and "sludge" could be the real reasons for the tummy trouble I've been having, the stuff we've here-to-now been attributing to Graft vs. Host Disease. If that's true, after the gall trouble is resolved, no more tummy trouble. I think we'd all agree that one week of acute discomfort beats a lifetime GI distress.

Well, that's all for now ... I'll keep you updated as more news becomes available.

much love,
Katie

Rain forest ceiling at the Academy of Science

Well the plan was for Katie to go in for surgery today. Alas she got bumped. Sounds like there is a confluence of issues preventing Katie from going in. First, the surgeons are slightly reluctant to operate because of her immune and platelet levels. Second, she doesn't urgently need the surgery. Between those two, enough people got on the board to bump her. The doctors reassured us that there is a very good chance it will happen tomorrow. They used a restaurant analogy to explain it. Today Katie was more of a walk-in, but she has a reservation tomorrow. Of course when asked what time the reservation was for, all we got was a chuckle.

On a brighter note, they lifted the dreaded NPO so Katie has been able to eat for the past few hours. She's slowly trying to get her groove back with the eating thing. I can't believe I'm saying that about Katie, but 4 days without any food has an impact. Another good sign is that she was able to take seven laps around the ward.

So the plan is for Katie to get NPO'd starting this evening until they either operate or decide it won't happen tomorrow either. Once the operation is over, it'll probably be a day or two before she gets released. This is mainly because the oncology folks monkeyed with her immunosuppressant medications to reduce the load on her liver until after the operation. Once the operation is done, they will get her back on all oral meds and readjust them as well. It might take a day or two to get the levels dialed in enough to be released. Ug, well it sounds like we're almost done with this little episode.

-ian

The day for my gallbladder surgery has arrived. The surgeon just visited and said we are definitely "on" for this afternoon. Someone should come for me around 3pm and the procedure will begin about 4pm. I will be relieved because I woke up this morning with that feeling you get when you've truly run out of patience with something and, it's official, I'm sick of this place. As for the surgery itself, the surgeon says there's and 80/20 chance they'll be able to remove my gallbladder laproscopicly (I would love to check the spelling on this world, but my part-human, part-machine husband's computer is so complicated that you can't even browse the internet anymore without being an insider. Most people have bookmarks, a link to a homepage -- let you type in the url field, for God's sake!). The surgeon examined my CT scan, though, and said that my gallbladder is so inflamed and bloated with stones that there's a chance they might have to take it the old-fashioned way -- with a big 'ole scar. Isn't life funny that way? You're finally skinny enough for a bikini, just not entirely presentable. I'm NPO ("Nothing by Mouth," but it's really from the Latin -- "nulla per os" -- so that's why it's "NPO" instead of "NBM," in case you're wondering, I was ...) today, again. Yesterday, I was allowed to eat whatever I wanted and was very encouraged to do so. Of course, that just made me loathe the thought of food. I mean, wouldn't you feel the same? They don't let you eat all week and then all of the sudden it's "eat, eat, eat!" ... Rising to the occasion, though, I managed to eat a tuna fish sandwich, most of an Asian pear, some dried apricots, a few Cracker Jacks and Chex Mix. Funny how today, I think I could eat a horse. But really, I know I could just do with a glass of water or an ice chip. When I have these restrictions, I think of 18th century desert travelers, prisoners stonewalled in 17th-century garrisons and, well, getting lost in the woods without the proper provisions. I feel bolstered by the knowledge that I am not alone in my suffering and, in many cases, that the duration of my discomfort will pass swiftly in comparison to most of those above mentioned ... Anyway, I am looking forward to getting back on a solid diet at my own pace -- without the vicious gallbladder. And I've only got 1:20 until they come to take me away ... What's the proper thing to say to someone who's about to go into surgery? Hmmm ... Happy Knife! Katie

After almost missing yet another day in the operating room, Katie got in to have her gall bladder removed last night. They were able to remove it laproscopicly and there were no complications. Now the only thing left is for her to get the pain from the operation under control and to switch her tacrolimus from IV to oral. I'm sure Katie will fill y'all in on the experience once she's a little less deloted.

-ian

I am feeling a little bit like this little red caboose today. See how torn up and rusty he is? See how he's so tired that he's barely hanging onto the track? I'm looking at him and wondering if he'll ever feel wind on his wheels (I haven't seen a working caboose around in a long time, at least around here). I bet he's looking back at me thinking similar things, too.

We just found out that I don't get to go home today. My oral Tacrilimus or "Tac" (crazy immuno-susspressant drug that allows two sets of DNA to share my body) levels aren't cooperating by rising to "therapeutic" levels (read: bad things could happen). Out of all the drugs I take, Tacrilimus is King. Basically, if Tac's not happy, I'm not happy.

Today, in my more bitter moments, I think I just might be here forever. That, and can you believe my f&*king gallbladder is gone?

The silver lining, however, is that I am becoming a great resource for all of you as you grow older, wiser and frailer. Here's another Top Ten list to stick into a drawer until you need it:

Top Ten Things to Do to in Order to Survive a Lengthy Hospital Stay

1. Don't go anywhere that doesn't have a wireless connection that patients can access. It's helpful if it's a good one.

2. Bring your laptop. If you don't have one, strongly consider getting one; they are a great source of entertainment, acting as a DVD player when needed, and a can't-live-without source of communication ... It's cool when 1, 2, or 3 friends call a day to find out the "latest," but soon it's the telling the story about your sickness that starts making you sick. Consider keeping a blog ... or a daily Facebook update. One nurse even suggested getting an old phone with answering machine, where you or a family member can leave "updates" as the greeting.

3. Invest in a good pair of noise-canceling ear phones. If you have to share a room, they will prove invaluable. (Or, you could just get a immuno-compromised disease like leukemia so you're practically entitled to your own room.)

4. Be your own advocate (and have a friend or family, act as one, too, because honestly there will be some days you'll be glad to not necessarily remember.) Pay close attention to what medicines you're getting and why, what treatments are needed and take care to understand the details, etc. Even in the best hospitals, mistakes are made. When I was first admitted for my gallbladder, I was put in a room with a roommate suffering from pneumonia -- of all things! (For those of you who don't know, getting pneumonia right now could well, like kill me.)

5. Other stuff to do: Even my husband can't be on the computer all day (you know it's true, Ian!!). You should bring a book (just one or two!), a couple of magazines and an empty notebook with a pen. Even if you do really use all this stuff, you can have a friend or family member bring you more. Your room will already be covered with extra cans of soda, Ensures, puddings, etc. and clutter is just depressing.

6. The comforts of home. Bring your own cuddly blanket, underwear, and socks. While you're at it, you'll definitely want a robe and slippers. You could go further and bring your own jammies & toiletries, but that's a call you gotta make. I brought everything the first time ... and found out pretty quickly that you really don't need everything. Imagine being too sick for face cream. It happens, sad as it is.

7. Whenever you can, appreciate your nurses and nurses assistants by doing some of the gross stuff yourself. For instance, there's this weird thing about hospitals where they like to keep track of how much you pee, thus you pee in this plastic bowl they call a "hat" that fits over the toilet (in case you're wondering, it's two hats if they want to see #2 -- ewww!). When I was feeling well enough, I dumped my own pee and recorded the amount on the wipe board so the nurses would just have to write it down. Mind you, it won't always be possible. You'll be too sick to get up. You'll be anchored to your bed by too many tubes. But when -- and if -- you can, make the effort. You're creating a beautiful new relationship with the person who's basically in control of your pain meds, adorns your bed with fresh sheets, answers your calls first from the switchboard.

8. Don't be a sissy. Take the pain medication -- and speak up if it's not working for you. Also, don't be afraid to ask for pain medication. If you wait for your nurse to come in and say, "Would you like your pain medication now?" you may be waiting all day. Plus you're in the hospital, one of the grimmest, most banal places on Earth -- a step up from prison. If you can make your day go by a little faster with a little of the la la's and a lot of sleep, bring it on!

9. Get up and walk every day, if you're able. I know, doing laps around the ward is not that exciting, but it will keep your muscles and cardiovascular system strong. Walking is important for getting well! (Never do this barefoot, by the way. Always wear no slip socks, slippers or shoes.)

10. Change the date on your calendar -- there's one in every room. Mostly, a nurse will do it, but if they get behind, make sure it gets done. You really do lose track of time and days when you're on "the inside."

That's all for now ... Hopefully, I'll really be getting out of here today!

cheers,
Katie

Well, I know I just posted saying that I wasn't going home, but that was actually yesterday (I couldn't post yesterday because I wasn't finished with my latest Top 10). Anyway, today, Monday, October 27, two weeks since my admission, I am finally going home!!! And, that's all I'm going to write because I'm going to pack up my stuff and hit the road!

cheers,
Katie