Katie's BMT Updatestag:www.dvrockstar.com,2010:/bmt//62010-03-11T20:34:33ZLatest updates on what's happening with Katie's Bone Marrow TransplantMovable Type 4.25Long time, no hear?tag:www.dvrockstar.com,2010:/bmt//6.2572010-03-11T19:41:25Z2010-03-11T20:34:33Z Yeah, I know. I'm bad. I get feeling a little good and what do I do? I go out living and quit writing in my blog. Just what kind of grateful am I to all of you who have...www.dvrockstar.com
want to read it can do -- when I'm done. I'll let you know.
And my health? So glad you asked. I'm virtually fine. I say "virtually" because there are some lingering issues, like my numb toes and, a little more importantly, my crashing neutrophil numbers (if you recall, these are the white blood cells that fight infection) -- they've been falling below normal about every six weeks and no one knows why (they almost never know why). They thought that I might have developed a rogue neutrophil-killing antibody, but they did a test for it and found nothing. So for lack of a better solution, they've been giving me a neupogen shot every time the counts drop below normal, which sucks because the shot almost always knocks me on my ass for a day, day and a half where I lie in bed all day feeling like my bones are growing. I had my last shot on Tuesday and finally got out of bed this morning ... feeling much better now, thank you.
But other than the toes & the neutrophils, I feel great. I am down to *one* Tacrolimus pill a week. I am off the V-Fend completely. Instead of a million pills a day, I take about five pills a day (including vitamins), seven on weekends (special antibiotics). It's so great, every time I take pills I get that weird feeling like I'm forgetting something, but alas, no -- I just take less pills!
I've gained some weight -- thank you Dronabinol (you didn't know pot came in pill form, did you? They call it a "cannabinoid" Heh heh). I've grown some hair (good, but not fast enough -- I still get hit on by chicks at Rainbow). I can even ride public transportation again (hooray, right? Zach thinks so). Soon I'll go back to work, but doing exactly what -- video, writing, production -- who knows? Every time I try to think about how I'm going to juggle career with childcare, I go mental.
I've even been getting out and having fun. I even went to my first show since before my bone marrow transplant (2 years +, right?), an SF Noise Pop Festival event to see a band called Best Coast (great lo-fi, fun, fun, fun vocals). For the first time in, I don't know, eight years since this whole thing began, I feel like dancing. Maybe that has something to do with the fact that I now have the bone marrow of a 20-something (I jest, but maybe?).
Oh, also another fun fact: My blood type changed from A+ to O+ ... Trippy, no?
Did I also mention that I am 99.9999999% donor? Yeah, that means, in a sense, I'm technically dead. Cool, eh? F*&K cancer. I win!
All for now ... I have so much to tell you about Zach, but I'll save that for another entry (soon, I promise) ...
much love,
Katie
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Disneyland and other adventures ...tag:www.dvrockstar.com,2009:/bmt//6.2532009-10-22T18:08:05Z2009-11-20T08:03:48Z Thanks to my friend, Jonny, I am sort of addicted to Blip FM. It's this web site where you can essentially DJ by "blipping" songs. I am totally reliving my college DJ name, even using my old handle ("Lovecat")...www.dvrockstar.comgood insurance. But that's another story.
Well, I hope you are all well (I am, did I say that?) ...
much love,
Katie
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tag:www.dvrockstar.com,2009:/bmt//6.2522009-10-07T16:01:15Z2009-10-07T17:22:31Zabout:blank Well, I finally got the flu. Two whole weeks of co-existing with my semi-sick husband and sometimes sick little boy and I'm starting to feel pretty cavalier. My immune system must really be kick-ass, I think. My system more...www.dvrockstar.com
Well, I finally got the flu. Two whole weeks of co-existing with my semi-sick husband and sometimes sick little boy and I'm starting to feel pretty cavalier. My immune system must really be kick-ass, I think. My system more vulnerable to disease to most? HA!
Well, wouldn't you figure that I get it worse than the two of them put together and right before we're supposed to go on vacation (we've been planning a long weekend to go down South, hit Disneyland and meet up with my uncles and cousins in San Diego). Last night, I had a wicked sore throat, fever and stomach issues. I lay on the bed sucking cough drops and popsicles, eating ice cream and sipping tea while watching successive episodes of "Gossip Girl." Today, my fever is gone, my throat is less scratchy and my bowels have, thus far, been silent. I'm feeling better and, I have to say, it's really nice to just be sick, like normally sick, for a change. I keep thinking, my whole life could be like this now!
Tuesday I have a big clinic day, bone marrow biopsy and everything. I am also getting my "newborn" vaccinations. Last Tuesday, I got to drop another Tacrolimus pill and, this Tuesday, there be may more to go.
Lots of people have been asking me how I like my new house, how I spend my days, etc. I simply can't explain how awesome it is. I walk out my door and stroll down to the bus stop. The sun's on my face and plants are so green. It smells good, like fresh sheets and there are people to watch. I'm wearing my headphones, enhancing the experience, my own personal sound-of-life soundtrack. The bus arrives and I slump into a window seat near the back door. The bus lurches forward and I get lost in the bustle, staring out the window and letting my mind wander. I am so drunk on imagery and my own thoughts that I almost miss my stop. I pop out at 16th Street and make my way toward Zach's school. I pull out my cell phone to check the time. I'm early and consider, as I always do, walking down to Bi-Rite for an ice cream. Deciding against it, I let myself into the school yard, settle on a picnic table bench and wait. Some of the other moms and dads will be here soon and I like the chit chat.
At roughly 2:15pm, the kids start milling out of their bungalows. I see Zach. He's wearing his backpack which makes him look very grown up. There's a moment where I get to watch him before he sees me, but then he does see me and he lets out a squeal. You see it in movies and commercials all the time, but there is nothing better than having your kid run from some distance into your arms. I bend down, arms outstretched and, when he hits me, we almost fall over. I ask him "how was your day?" and he ignores me. When I tell him we're taking the bus home, he squeals again.
My day varies from here. Sometimes Zach and I spend a lonnng time waiting for the J and sometimes we spend a lonnnnng time for the 48. Sometimes we stop at a park. Sometimes we go to the library. Sometimes we have a play date with either Emma (who is, as Zach says, "much beautiful") or Oliver, two new friends from school. Sometimes we head over the bridge, either the Bay Bridge to see cousins Zoe and Maizie or the Golden Gate to see Grandmamma, G-Paw and, hopefully BFF Carter. Wherever we go, though, it's an adventure. There are always things like rockets and sea turtles and crabs that like to pinch and tickle. And I always come home with a pocket full of smooth rocks, leaves and feathers.
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What Now?tag:www.dvrockstar.com,2009:/bmt//6.2512009-09-14T16:18:44Z2009-09-14T18:42:20Z "What Now?" is the title of a speech Ann Patchett gave at the 2006 Sarah Lawrence College commencement. Since, it's been turned into a book and is a quick, inspiring read. Meant for students graduating from college, the message...www.dvrockstar.com
"What Now?" is the title of a speech Ann Patchett gave at the 2006 Sarah Lawrence College commencement. Since, it's been turned into a book and is a quick, inspiring read. Meant for students graduating from college, the message really applies to any change in life, the moments when you're standing on the precipice of something ... waiting, wondering, fearful about how it's going to turn out.
It's the perfect book for me now, because I am in that place. After seven years of numerous chemo treatments and, ultimately, a bone transplant, I am emerging on the other side. I was sick, I could have died and I didn't. Sometimes I marvel at that. I'm elated, but at the same time, as I move further beyond the haze of the medical mesh that has been my life, I feel a little scared. OK, so I'm alive. What now?
I keep thinking about Abraham Maslow's Hierarchy of Human Needs. He's broken them down into five categories: Physiological Needs, Safety Needs, Needs of Love, Affection and Belonging, Needs for Esteem and Needs for Self-Actualization. The idea is that you can't advance to the next level until the prior level is satisfied. Well, I feel like I've been stuck for so long on Physiological and Safety needs that I've forgotten what it feels like to go further. Here I have this whole new open world of possibilities in front of me -- geez ... I could have died! -- and I feel so lame because I feel lost and a little scared. What now?
Some of the answers I've been getting have been troubling. Troubling because they're so true they frighten me. I want to write. I want to write stories. I've known since I was about six and used to make picture books out of construction paper (they were romances). In fourth grade, I used to write stories starring my classmates and read them for show and tell. As a teenager, I wrote morbid stories and Gothic poetry under the pseudonym "China Doll Smith." I've known, yet I feel like I've been running around the issue my entire life, making exceptions, excuses. Sometimes I read other people's books and I get jealous. I should have wrote that! I think. And yet, somehow I don't feel like I have the right to expect these things for myself. I imagine people rolling their eyes, calling me a dreamer who has no anchor in the real world. But I can't help wanting it and the feeling has just gotten more intense. Maybe it's because I could have died ... and now it's impossible to feign away. If I am going to be here, then I have to write. I don't know.
So now you know the nasty truth: Katie wants be a writer. She wants to create worlds and characters that people fall in love with and never want to leave.
I still haven't quite figured out why it's so hard for me to admit, talk or even think about. It feels like I'm coming out of the closet or something. I always get embarrassed. I actually feel my face get hot.
Steps to take: I've fooled around with compiling a memoir of my transplant experience. I also have this idea for a high school romance. But I get stuck in fits and starts. So I've decided I need so guidance. I've enrolled in a class a place called The Writing Salon in the Mission ... It starts October 12, every Monday for 10 weeks.
As for the rest of life, a lot has happened. We moved out of Ian's parents house a couple of weeks ago into our new house in Noe Valley. And even though we're about to embark on a remodel of the upstairs, we're still quite comfortable in the make-shift quarters we have set up for the time being. There's been some adjustment being Zach's full-time care giver and our family's full-time meal maker. I was telling friends I've never felt so much like a "wife." They suggested I should be Betty Draper for Halloween.
Zach loves his new school. He comes out skipping and smiling every day when I pick him up. He's learning a lot, too ... As he was falling asleep the other night, he was counting to himself, 1-10 -- in Spanish.
I have a clinic appointment tomorrow, but two weeks ago things were still holding. My liver numbers are still slightly up and I still have a slight GVHD rash on my face, but I am still stable. The unfortunate thing is that, until these things clear up, they won't reduce my Tac (immunosuppressant drug) any more. Also, I was slightly neutrophenic during last visit. I will be interested to find out if that's cleared itself up. Otherwise, I'm feeling well. Out in the world, participating in life, succeeding most of the time.
I wish my hair would grow, though. It's been over a year now and it's still horrible. But now that I'm back in SF, in the cooler weather, I'm able to wear my wigs a bit more. It's a crazy concept, but I get to pick the hair that matches my outfit. How cool is that?
All for now.
--Katie
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Midnight Baseballtag:www.dvrockstar.com,2009:/bmt//6.2492009-07-08T09:45:41Z2009-07-09T21:56:54Z Here are Carter and Zach. They are best friends. See? They do everything together. I remember friendships like that, connections so simple and pure that they make sense. Their games are made out of anything, a toy, a plant...www.dvrockstar.com
Here are Carter and Zach. They are best friends.
See? They do everything together. I remember friendships like that, connections so simple and pure that they make sense. Their games are made out of anything, a toy, a plant or word and it becomes a narrative they repeat over and over and share until they tire of it and come up with something else. It's a beautiful thing to watch two kids who play well together, watching them bond through mutual respect and their vivid imaginations.They take each others ideas and build on them -- it's electric.
In adulthood, we tend to let that pervasive sense of curiosity go and whimsy goes by the wayside. When was the last time I rolled down a meadow, grass and flowers in my hair, giggling all the way down? However, I do remember playing freeze-tag in Golden Gate Park after a party with me and a bunch on 20-somethings. Now that was exhilarating. Acting like children. It's an important thing. We should do it more than once in awhile. Going to that place of silliness not only strengthens your sense of clarity, self and what's right in the world, the giggling and hilarity that ensues lifts your spirits and reduces stress.
I love having a 3-year-old in my life to remind me these things.This week alone, I've been asked why there are no Mommy Long Legs spiders and why there are no wiener kitties, like there are wiener dogs. I've explained the difference between today, tomorrow and yesterday. I've pointed out what makes a Bumble different from a regular bee and I've even told tell him what it means and feels like to be lucky. Every time I try to explain something new and relate it to something in our world, I learn something new for myself, or something I'd forgot. And it's fun, at least until it escalates into the "Why? Why" and "How come ..." stage ... Then it gets annoying. That magical moment poofs away and then you're left with a manipulating toddler who's decided he's going to force his agenda using the mouth of a 16-year-old teenager.
Anyway, I still like to close my eyes and try hard to get a glimpse of what it was like to hang out with some of my long lost BFFs in grade school. They were special times because I guess you believed you'd always be so close. You didn't know that you could grow apart, move away or just plain hurt each other. A good friend makes it with you through all that, that good friend is gold. I have a few special ones out there that I don't get to talk to as much as I should.
See, this is what I do all night when I can't sleep. Ponder and muse on past and future (hopefully not too much), listen to Midnight Baseball on the radio and watch consecutive episodes of "House" on TV (Yes, I know I swore I'd never watch a hospital drama, but this is like medical mystery meets CSI and the protagonist is an ass. I'm really enjoying it, especially since I've already had a lot of the medical procedures and I get that it's totally over-blown, especially when they went after the bone marrow biopsy with a drill. (Hello I've had like 5 of those and it's all about the Demerol, the lidocane and right stick nurse. I've never seen no drill).
At Clinic today, I started Rituxan, which probably accounts for my behavior ... I feel tired, but can't sleep, a little anxious and I sneeze. I checked my blood sugar and it's up, 277 two hours after meals (isn't good). I did a little look online and learned Rituxan raises blood sugar (and causes sneezing) in some patients, but it's pretty rare. I figure I'll monitor the sugar tomorrow, make sure it's real before I call it in. I did have a lot of sweets in the past few days ... but hey I'm up 4 pounds, so hey!
The good news is that my bloodwork looked really well before my first Rituxan treatment. My platelets held their own at 33 (even though I did get a transfusion on Sunday) and my red cells seem to be hanging in there, too. My doc thinks, and so do I, that perhaps my body is righting itself on its on. But it's too early to tell so our best plan is to keep with the Rituxan because it can only help. Time will tell, but it is looking good for our family trip to Bear Valley. There had been talk about me only going half the week, coming back for clinic and then driving up again. But if my platelets and red blood cells get stable by then, I could make the whole trip! I can even buy a bathing suit and go into the water when my family goes to the lake. I am so pleased.
Last thing, I don't think I ever mentioned that they confirmed I have Evan's Syndrome, which is an autoimmune disorder that attacks healthy platelets and red blood cells. The other good news is that this problem is only happening amongst the new graft marrow cells and has nothing to do with leukemia. Well, OK, it could have played a role in making it happen, weak immune system, yada yada ... but regardless, it's treatable ... and that's what we like to hear!
All for now. Midnight Baseball is over and I gotta try to sleep.
night night ...
Katie
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Footloose!tag:www.dvrockstar.com,2009:/bmt//6.2472009-07-01T22:57:16Z2009-07-01T23:32:06ZToday I visited the foot doctor and she took away my boot and my crutches ... Horray! I feel so weird walking around so ... unencumbered. I have two hands to carry things up the stairs. I can drive and...www.dvrockstar.com
Today I visited the foot doctor and she took away my boot and my crutches ... Horray! I feel so weird walking around so ... unencumbered. I have two hands to carry things up the stairs. I can drive and stand in the shower. I will no longer have to crawl to the toilet in the middle of the night because I am too sleepy to navigate the crutches. Yet again, I have been born again!
Not to say that all my medical troubles are finished. On Monday, I went to clinic and my platelet count had dropped again to eleven. My other counts weren't looking so hot either, especially my red cells. I got an infusion of platelets Monday and I am going back for a blood transfusion on Thursday. Each blood transfusion takes about four hours. Platelets take about one hour and IVIG treatments run roughly four hours. Depending on what I need tomorrow, I could be there all day.
The fact that my platelets dropped again shows that my condition hasn't improved. The professionals seem to agree that I have some sort of autoimmune disorder, but they are split over how to treat it. Some say put me on steroids (Nooooooooo! Not the magic pills that make me bitchy, sad and sleepless, not to mention diabetic). Others say Rituxan, a monoclonal antibody that can search and destroy militant B-cells (I have had this medicine before, as part of my first round of chemo in 2004). I'm leaning toward Rituxan just because I hate steroids, but I really need to find out which is the better monster.
On the home-hunting front, we had a heartbreaker on Monday. We didn't just lose, we came in last out of five other offers. It was especially painful because we felt hopeful about this one; we'd made a strong offer (so we thought), a little over asking with no contingencies. But somebody else out there bid way, way over the asking price, leaving us in the dust. Since this is the third time we've bid on a house and the third time we've lost to multiple high bidders, I felt demoralized. I felt sad and wistful all day yesterday, somehow imagining I wasn't going to find a house I liked and could afford, ever. Thankfully, I feel better today.
cheers,
Katie
From the desk of Zach Buono ...tag:www.dvrockstar.com,2009:/bmt//6.2462009-06-28T07:43:45Z2009-07-02T22:17:37ZSo let me tell you like it is. My mom is getting better. She had a little set back with her foot, and now she's on crutches, but Gpa has a set of crutches that I can use, so I...www.dvrockstar.com
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Home again, home again ...tag:www.dvrockstar.com,2009:/bmt//6.2452009-06-26T18:07:55Z2009-06-26T18:45:01Z I finally got out of the hospital on Wednesday about midday. I thought I would get out earlier, but you know how things flow. First, my platelets seemed to right themselves and at least seemed to be holding, if...www.dvrockstar.com
I finally got out of the hospital on Wednesday about midday. I thought I would get out earlier, but you know how things flow. First, my platelets seemed to right themselves and at least seemed to be holding, if not going up. Then my other counts drop, mainly my hematocrit (red blood cells that give me my energy) and my neutrophils (ah yes, those oh-so-very important immune system cells). Hematocrit is hanging out at 37, borderline transfusion time) and my neutrophils are somewhere under .5, the magic number that defines neutrophenia, which we all know I like so much.
On Tuesday, the docs decide to keep me an extra night to get a transfusion of red blood cells. The nurse gives me my pre-meds (Benedryl and Tylenol to help stave off reactions) and goes to order the blood. Eight hours later, they still haven't found a match for me because of those unruly antibodies in my blood that have been causing the ruckus all along. So I sleep, expecting to be woken sometime in the middle of the night. Morning arrives and still no blood. However, my morning blood test shows a bump in my hematocrit and my neutrophils. No more low red count and no more neutrophenia! That's right about the time they find the right blood for me and the docs decide that I don't need it anymore. I get to go home.
All in all, my latest hospital adventure was little more than a blip, and from what I can tell, an isolated event, not a prediction of the future. It does scare me, though (and frustrates me more) when it happens. I've gotten so far along in this game that I'm starting to feel like I don't have many chips left. Seriously, I will share with you, I was sitting on that gurney in the emergency room, with queer red splotches covering my legs and I just found out my platelets were nine. I wondered, kind of matter-of-factly, abstractly, outside of myself ... Is this it? Is this the beginning of something big? And, of course I asked the doctor if I was going to die (oh yes I did) and he assured me I was not ... Then I see "anxiety/depression" scrawled along with five or six other things in the "diagnosis" box on my chart.
I should share some good news that I found out along the way: 1) I got my bone marrow biopsy and the preliminary results show NO CANCER in the bone marrow. Horray! Now all I have to do is survive all the stuff I did to get rid of it. 2) I got an MRI on my hip joints (they suspected Avascular Necrosis (yeah, sounds bad, is bad) and everything is clear. I just have to strengthen that area, it's weakened from steroids, etc.
Well that's all for now ... More doctor appointments next week and I'll be back with more news. You are all in my heart, my friends ...
much love,
Katie
We have a name ...tag:www.dvrockstar.com,2009:/bmt//6.2442009-06-21T19:48:18Z2009-06-22T03:12:11Z The doc visited my room today and informed me that I have Idiopathic thrombocytopenic purpura or ITP. Usually having a name for something or diagnosis is comforting. Now that I know what it is, I can deal with it....www.dvrockstar.com
The doc visited my room today and informed me that I have Idiopathic thrombocytopenic purpura or ITP. Usually having a name for something or diagnosis is comforting. Now that I know what it is, I can deal with it. But ITP is different. The "idiopathic" part of the disease means that they really don't know what causes your immune cells to stand up and wage war on your platelets.
The docs are also pretty sure my ITP isn't related to leukemia. The theory is that my recent ankle surgery stirred my still-somewhat-immunosuppressed immune system and ... viola! ... Trouble.
So far, I've had one infusion of platelets, which gave me a count boost from 9-40 and they've been on the way down again ever since: 31, 21, 16, 15. I'm now getting Intravenous Immunoglobulin (IVIG) Treatment, a blood product that's meant to help eliminate the bad antibodies. Hopefully my platelets will stabilize tomorrow and I'll be able to go home. We'l see.
cheers,
Katie
Back in the Saddletag:www.dvrockstar.com,2009:/bmt//6.2432009-06-20T21:38:31Z2009-06-21T19:48:06ZLife can really throw you a curve ball sometimes. Two days ago I celebrated my 1-year bone marrow transplant anniversary (my "other" birthday, if you will). Aside from the ankle and still being on crutches, I feel pretty good. I'm...www.dvrockstar.com
Life can really throw you a curve ball sometimes. Two days ago I celebrated my 1-year bone marrow transplant anniversary (my "other" birthday, if you will). Aside from the ankle and still being on crutches, I feel pretty good. I'm definitely looking forward and can smell the scent of long-term health like one might smell fresh baked bread. I haven't had a piece yet, but the aroma is wafting all around me. My mouth is watering.
Then, just like that ... Guess where I am? No, you'll never guess because I would've never guessed in a million years! I'm back at the hospital. GROAN.
After my ankle surgery, I noticed a small patch of red dots on the side of my right knee. And because I watch a lot of CSI, I recognized it immediately: Petechiae. In case you don't watch CSI or any other gory crime TV, Petechiae is a small round red or purple dot on the skin caused by small hemorrhages (capillaries, usually) in the body. At my next clinic appointment, I show it to the nurse practitioner. He agrees that it's petechiae, but doesn't know what it could mean or what to do about it. It's small, only one, we'll watch it.
Two weeks later, undressing to take my bath, I see that both of my legs are covered with the telltale patches and individual little dots the size of a pin prick. There are also some purple splotches, where it looks like the writer left the point of the marker on the page too long. I take my bath, examining myself for more peculiar dots. It turns out that there are a few wayward splotches: one on my back, one on my left arm, one on my left hipbone. But, aside from those, the petechiae seems to like my legs.
I get out of the bath and call the Clinic. I leave a message with my nurse practitioner, who usually always gets back to me by end of day. After dinner, I decide she must not have been to work today. Should I call the after hours line and ask about it?
I don't want to. I am seriously thinking that this is no big deal, that it's some GVHD thing that comes and goes, like the redness on my face. But I do call and, when the doctor calls me back, he says I should go to the emergency room for a blood test. "Just to make sure you're platelets are OK."
Platelets are the part of your blood that help with clotting. Without them, a minor cut will continue to bleed or capillaries will burst inside your body as you go about your daily business. A normal range of platelets falls between 150 and 145 thousand. I got mine tested and they were 9. I'm getting admitted.
I will probably be here through the weekend while they try to get my platelets up, stable and figure out the cause. As I type, I have had one infusion of platelets. Now they will test me every six hours to see if the platelets are holding. So far I have had two tests: 49 and then 40. The doctors are happy so far.
There could be many causes, but most likely this has nothing to do with my leukemia. Most likely, it's fallout from the transplant. Whatever turns out to be the cause, from what I understand, the treatment is the same. I get platelets when I need them and also some Rituxan (a monoclonal antibody chemotherapy that searches and destroys only bad cells). And it will stop, at some point my body will start making and retaining platelets on its own again.
As the doc says, "This is just another bump in the road."
I don't have to tell you how sick I am of these "bumps" in the road ... I don't have to tell you how sick I am of these "bumps" in the road ... I don't have to tell you how sick I am of these "bumps" in the road ... ... ...
much love,
Katie
Everything's A-OKtag:www.dvrockstar.com,2009:/bmt//6.2422009-06-13T17:49:34Z2009-06-13T18:24:14Z My computer is dying, but I am not. It has long pauses between web pages, the letter "V" doesn't always work and the cursor randomly flutters around the screen or jumps between fields on web pages. As I type...www.dvrockstar.com
My computer is dying, but I am not. It has long pauses between web pages, the letter "V" doesn't always work and the cursor randomly flutters around the screen or jumps between fields on web pages. As I type now, it takes a second for the actual letters on the screen to catch up.
I have no excuse for not writing. I have been recovering from ankle surgery for the past four weeks and so have had plenty of "down time." What happened to my ankle, you say? I didn't have an accident. I had PVNS -- Pigmented Villonodular Synovitis -- a condition that is basically a build-up of gunga on the joints. For the last ten years, it's been "that bump on my ankle" and it didn't bother me. But steroids and other immunosuppressant drugs aggravated the problem and I started to experience a stabbing pain in my ankle every now and again ... One of the joys.
I've never been on crutches before and I'm here to tell you it's harder than it looks. But now, after four weeks, I am both cruising and so sick of hauling them around. Also, I can't drive. That means I am home a lot more than usual and I was home a lot before. I haven't been away from the house since last Saturday. No joke.
For lack of other stimulation, I've been spending more time in the garden, literally watching seeds grow into plants. I have never had a green thumb (I tried to grow mint once and, believe it or not, failed), but Ian's parents have planter boxes filled with lettuces, radishes, carrots and strawberries. Ron gave me a private lesson on planting and, gosh darn it, my plants are growing! I shouldn't be so proud, but it's wonderful to see something so bright and green poke out of the soil.
Speaking of life, it looks like I'm going to have a long one. I'm still a little too thin and have a sundry of other little issues -- numb toes, random stomach aches and whatnot -- but I can't believe how good I feel! ]]>
Sold!tag:www.dvrockstar.com,2009:/bmt//6.2372009-03-27T18:25:40Z2009-05-27T18:59:33Z Well, we sold our house. We're now in escrow and, if everything goes as planned, we'll be homeless! Horray! Update May 11, 2009: We closed Escrow! We are homeless! After we signed the papers, I started to feel a...www.dvrockstar.com
Well, we sold our house. We're now in escrow and, if everything goes as planned, we'll be homeless! Horray!
Update May 11, 2009: We closed Escrow! We are homeless!
After we signed the papers, I started to feel a little nostalgic ... so I'm dedicating the rest of this entry to Florida House.
Florida Street night view from our front porch.
Our friend, Jon, playing guitar in our old backyard. It must be around 4th of July because the grass is cut short, in case of wayward fireworks.
4th of July in the Mission ... said wayward fireworks.
Here's what our yard looked like the rest of the year.
There are some semi-ferral cats that hang out in the backyard.
We made friends with them.
Over the years, we remodeled every room in the house, one at a time. It was hard work and Ian gets most of the credit -- His handyman skills are better than he'll admit.
We did have lots of help from friends, though.
It was exhausting work.
There goes the roof!
And the walls!
Florida St. kitchen after a party ... There were many.
Gettin' our groove on ...
Gettin' our game on ...
Hootin' it up ...
We loved it here ...
But it's time to say good-bye ...
Good-bye Florida House!
]]>
Hair and Housetag:www.dvrockstar.com,2009:/bmt//6.2362009-03-26T03:07:34Z2009-05-27T05:21:25Z So you've probably realized by now that we only take pictures of Zach -- That's why we had to swipe this one of our "staged" house from someone else. Isn't that funny that you can become the parents you...www.dvrockstar.com
So you've probably realized by now that we only take pictures of Zach -- That's why we had to swipe this one of our "staged" house from someone else. Isn't that funny that you can become the parents you used to smirk at when you were younger? Now I know why they smiled knowingly back.
Well, I still have the finger-in-the-light-socket hair ... It's just all the same length now. It does look a little better, but I am anxious for a bit more hair. I know I have a decent wait ahead of me, too. My hair is ... disinclined. I would post a pic, but we only take pictures of Zach now.
Our house is finally on the market and our fancy marketing web site is up (I know I promised to post a link, but then again I thought that it's probably not a good idea to post my address on the internet. If you'd like a link emailed to you privately, please email me). Our first open house was Sunday and our realtor said it was a success. She's shown the house several times since and says that our house is really "popular." I am trying not to get too excited, but it is pretty exciting.
During the last week, I've been suffering some fatigue and nausea ... One day I slept from 3pm - 7am the next morning. The nurse practitioner thinks it's probably more fallout from the drugs. Like, it could be the steroids disappearing from my system or it could be that less steroids in my system is effecting the diabetes by putting less stress on my pancreas. To test this theory, I've been taken off the diabetes medication (Glipizide and Metaformin).
I do want to pass along that the doctors and nurses all agree that I am doing really well. Again, the important thing is that the graft is taking ...
cheers,
Katie
]]>
It's the little things. You know, like the side effects ...tag:www.dvrockstar.com,2009:/bmt//6.2352009-03-17T19:14:37Z2009-03-26T03:50:56Z I'm still here ... I've gotten to the stage in the game where I invariably start to succumb to the side effects of my many medications, mainly the steroids and tacrilimous. So, although I continue to improve over all...www.dvrockstar.com
I'm still here ... I've gotten to the stage in the game where I invariably start to succumb to the side effects of my many medications, mainly the steroids and tacrilimous. So, although I continue to improve over all (from the leukemia perspective) I now have to reckon with all the side effects that come with being on a drug too long. For instance, I got shaky hands, fatigue, a UTI called BK, muscle weakness, numb toes and loss of appetite. Best of all, I have drug-induced Diabetes, a condition that the doctor thinks will disappear once I'm off the immunosuppressant drugs. I hope that he is right because I had gestational diabetes and my whole family has diabetes -- I think I'm kind of up against it.
I hate diabetes, too, by the way. I feel like my day is trapped around a schedule of 3 meals and 2 snacks a day ... I have to plan these meals, keeping within my limits for carbohydrates (this involves a lot of counting ... and I never enjoyed math). Finally, each day, I prick my finger and squeeze droplets of blood onto the test strip in my blood sugar monitor. I do it all day: when I wake up and two hours after every meal. Sigh. It's a pain.
But overall, I'm in a good place (I keep reminding myself) ... The transplant has "taken," it looks like it will be a success; My latest bone marrow biopsy showed very little CLL in the marrow. Now I just have to survive the management of my meds and those annoying side effects. My doctor reckons I'll be off the worst of the drugs by June. (As of last Tuesday, I am also completely off the steroids, although it may take weeks for the drug to completely leave my system.)
In other news, I am getting my first haircut since the beginning of all this ... It's still really short (and grows really slowly) so I don't know what they'll be able to do with it. All I'm hoping for is a style I can wear outside the house, something to replace the finger-in-a-light-socket look I have now.
Last time I wrote, I talked about our housing situation. We've been very busy with it -- there was a lot of work to be done to get the house ready to sell. We hired stagers to do most of the work and, every time I go see the place, I recognize it less and less. Mostly, I like it, but I'm a little on the fence about some of the colors they chose ... Our real estate agent tells us not to worry, that it will all come together. There will be a web site soon and I'll be sure to post the link.
And as for where we're going to live, we're staying in San Francisco. Zach got into our first choice preschool, an alternative PreK-8 called Children's Day School. We are thrilled! Jury's still out, though, on where in SF we'll be. It all depends on whether we'll be able to get a decent price on our house: If we get a good price, we move. If we don't, we'll take it off the market and wait.
Also, now that I'm feeling better, I've really been getting to enjoy Zach more. It's kind of hard because I'm clearly #2 next to Grandmama and Zach has this way of making you know it. But, when we're alone, we definitely have fun together. Grandmamma got out Ian's old Legos and we've been having a blast with those ... It makes me wish I had my old Legos, because Ian's set is overwrought with spaceships, planes, trucks, etc.; My old set had more blocks for buildings, etc. ... My brother and I built towns, with police stations, hospitals and garages. I have to say, though, that even with Ian's set, I've made some pretty impressive (at least to a 3-year-old) airplanes and space vehicles.
Well, that's all for now ...
much love,
Katie
PS My friend, Shannon, is running the San Diego Rock 'n Roll Marathon with the Leukemia and Lymphoma Society's "Team in Training." She's running in honor of me and some other people she knows who have been effected by the disease. If you'd like to donate, you can do it here:
http://pages.teamintraining.org/or/rnr09/ssneed
]]>
The "Why" Questiontag:www.dvrockstar.com,2009:/bmt//6.2322009-01-25T15:44:09Z2009-01-28T06:42:15Z Our intrepid explorer Zach has hit the "Why" stage, that terrible time for parents where every question leads to another question no matter how trivial. It could be tolerated if he asked mostly useful questions, but instead he gets...www.dvrockstar.com Our intrepid explorer
Zach has hit the "Why" stage, that terrible time for parents where every question leads to another question no matter how trivial. It could be tolerated if he asked mostly useful questions, but instead he gets into this loop where he ends up asking the same things over and over again. Finally, it becomes a cacophony of "Whys" and they're coming so fast that he doesn't even hear you when you try to answer.
Well, lately I can relate to all that haberdashery of the mind. Now that I'm feeling better, we have a lot of big decisions to make as a family about what comes next. Figuring out what you want is one thing, knowing what you want is another -- and then there's what you can afford. Ian and I have been kicking around the idea on and off for a few months now: Should we sell our house and move? Hmmm haaa hmmm hmmm (silence on the subject for a few weeks.) If we did move, where would we move? Would we stay in San Francisco or bite the bullet and move to the suburbs? Hmmm Haaa If we stay in SF, where would Zach go to school? Would we be able to get him into a good school (yes, it's ridiculous -- I've have done more for "applying" for preschool than I did to get into college). All these questions and more.
There are basically three different scenarios:
1) Sell our current home and move to a better neighborhood in San Francisco. This is certainly the priciest, diciest option. Ideally, we'd love to live in Mission Dolores or Noe Valley, but most likely what we can afford in these coveted neighborhoods is a condo. Although I am not completely opposed to condos, we may not be getting more "house" than we have, just a better location and a set of distant "roommates," if you will, in the second flat. Today, we wandered into an open house on the old street where we used to rent -- a short stretch of Cumberland at the bottom of Dolores Park. It was beautiful; That street sure makes my heart pound with good memories and the flat was choice, too. It's what they call "finished," in the Edwardian style with bits of character amidst modern flair. It's also about the same size as our house now (the living space) with two bedrooms and one and a half baths. We'd share the yard and there's tandem parking.
2) Move to Marin. Believe it or not, there are deals here right now and we could definitely get more house for our money ... But both Ian and I aren't quite ready to give up urban life (apparently neither is Zach because he's been saying "Can we live in the San Disco house?"). But man, if there was a right time to do this, it would be now.
3) Keep our current house. I love my house ... and when we make all the improvements we need to make to sell the house, I'll probably love it even more. But we've been there nearly ten years now and the neighborhood is just as trashy as it ever was -- and a little more violent, apparently, although I haven't witnessed anything personally. This is also the safest option; Same monthly mortgage and property taxes.
Anyway, we're really going to make the decision within the next couple of weeks. We called an agent; She's doing the numbers, sending us possible listings and taking us touring on Sunday. I'm hoping the information will make the decision crystal clear for us, because right now I feel like a corn kernel in an air popper, visualizing myself in different scenarios. It's driving me nuts, but it's also sort of exciting.
Well, this is where my head is ... You can tell I'm physically feeling better because this is where my head is ...
The health report: My platelets went up (from about 80 to 144) ... Horray! And all the rest of my cells --RBC, WBC, Hematocrit, etc. are hovering just above normal. I'm having a bone marrow biopsy tomorrow, where they'll look for vagrant CLL (results in six weeks). The test is simple, but uncomfortable, which means I'll get Demerol and a nasty bruise. I am also getting an MRI on my right ankle; It's been bothering me a bit sometimes when I walk, creaking and groaning and all that. I don't know how much this has to do with my BMT, but I figure if you're already in the shop ...
My biggest complaints: sleeplessness, fatigue and weakness. The nurse practitioner told me the steroids atrophy the muscles somewhat and I really notice, like going up stairs with a laundry basket is a chore. Lifting Zach forces a full grunt and running, jumping riding bikes is out of the question.
My most coveted moments: Ian and I went out for sushi. My hair is growing so much that it's almost ready to get trimmed. Zach has his first real "buddy," a boy named Carter at school and we like his parents. At dinner last night, Zach announced that I was his "favorite girl."
Well, all for now. Off to get some sleep (hopefully).
--Katie
]]>
good insurance. But that's another story.
Well, I hope you are all well (I am, did I say that?) ...
much love,
Katie
]]>
My computer is dying, but I am not. It has long pauses between web pages, the letter "V" doesn't always work and the cursor randomly flutters around the screen or jumps between fields on web pages. As I type now, it takes a second for the actual letters on the screen to catch up.
I have no excuse for not writing. I have been recovering from ankle surgery for the past four weeks and so have had plenty of "down time." What happened to my ankle, you say? I didn't have an accident. I had PVNS -- Pigmented Villonodular Synovitis -- a condition that is basically a build-up of gunga on the joints. For the last ten years, it's been "that bump on my ankle" and it didn't bother me. But steroids and other immunosuppressant drugs aggravated the problem and I started to experience a stabbing pain in my ankle every now and again ... One of the joys.
I've never been on crutches before and I'm here to tell you it's harder than it looks. But now, after four weeks, I am both cruising and so sick of hauling them around. Also, I can't drive. That means I am home a lot more than usual and I was home a lot before. I haven't been away from the house since last Saturday. No joke.
For lack of other stimulation, I've been spending more time in the garden, literally watching seeds grow into plants. I have never had a green thumb (I tried to grow mint once and, believe it or not, failed), but Ian's parents have planter boxes filled with lettuces, radishes, carrots and strawberries. Ron gave me a private lesson on planting and, gosh darn it, my plants are growing! I shouldn't be so proud, but it's wonderful to see something so bright and green poke out of the soil.
Speaking of life, it looks like I'm going to have a long one. I'm still a little too thin and have a sundry of other little issues -- numb toes, random stomach aches and whatnot -- but I can't believe how good I feel! ]]>
Well, we sold our house. We're now in escrow and, if everything goes as planned, we'll be homeless! Horray!
Update May 11, 2009: We closed Escrow! We are homeless!
After we signed the papers, I started to feel a little nostalgic ... so I'm dedicating the rest of this entry to Florida House.
So you've probably realized by now that we only take pictures of Zach -- That's why we had to swipe this one of our "staged" house from someone else. Isn't that funny that you can become the parents you used to smirk at when you were younger? Now I know why they smiled knowingly back.
Well, I still have the finger-in-the-light-socket hair ... It's just all the same length now. It does look a little better, but I am anxious for a bit more hair. I know I have a decent wait ahead of me, too. My hair is ... disinclined. I would post a pic, but we only take pictures of Zach now.
Our house is finally on the market and our fancy marketing web site is up (I know I promised to post a link, but then again I thought that it's probably not a good idea to post my address on the internet. If you'd like a link emailed to you privately, please email me). Our first open house was Sunday and our realtor said it was a success. She's shown the house several times since and says that our house is really "popular." I am trying not to get too excited, but it is pretty exciting.
During the last week, I've been suffering some fatigue and nausea ... One day I slept from 3pm - 7am the next morning. The nurse practitioner thinks it's probably more fallout from the drugs. Like, it could be the steroids disappearing from my system or it could be that less steroids in my system is effecting the diabetes by putting less stress on my pancreas. To test this theory, I've been taken off the diabetes medication (Glipizide and Metaformin).
I do want to pass along that the doctors and nurses all agree that I am doing really well. Again, the important thing is that the graft is taking ...
cheers,
Katie
]]>
