the flu!

Well it looks like i caught the flu! as far as i can tell i caught it while visiting my bone marrow doctor at Stanford. I'm kinda nervous but it is fairly mild so far. Morey is out now getting prescriptions filled for me.

Other than that idiot sneezing on my in the waiting room Fridays' visit to Stanford was great. My blood work continues to improve, including my liver function. And Dr. Miklos reassured me about several things i'd been worrying about. One was the chances of getting a third cancer and the other was about being able to recognize graft verse host disease in time.

He said because i have a brand new immune system i am now no more likely than anyone else to get cancer. I thought that ones chances went up with each cancer but not so if you have an allogenic transplant.

He also told me that the signs of GVHD are not subtle. I will recognize it as something more dramatic than all the little things that were capturing too much of my attention.

So all that is a great relief.

Pray i can get through the flu without activating GVHD.

thanks

kayla

the big move

This Oct / Nov has been crazy busy because we moved across the bay and are back in Berkeley! so glad to be here but there is so much to do!! boxes everywhere and things to organize. espicially my studio.

Because i'm focusing on the move and making art i won't be posting here as much. try the art page or my blogger site.

here are some comments i've made recently to others about the state of my health etc.:

things here are too chaotic for you to help put away! but i appreciate the offer.  Probably the best organized room at this point is Sarah's!

i'm doing well but the move was hard, i started feeling very off and had to back out of most of the follow through. left it to my husband whos not so great at the organizational aspects. so it was hard. we are glad to be here and we are slowly settling in.

I'd love you to see the new place when i unpack a bit more. I have these great built-ins in the dining room which is my studio. lotsa drawers and 2 cabinets with windows so my colors and thingies will keep me inspired.

yes, big tree by street, little tree in front yard, alot of wisteria and drab paint!

oh big trees in backyard too. there are several trees that i don't know what they are called but i recognize an old oak, a young redwood or two and a maple (pointy five fingered leaves that turn bright colors in the fall).
today was a a really nice day, rain storm last night followed by partial clearing. we needed the rain so bad! the yard has been neglected so i look forward to putting in herbs and so forth.

the place is small (you will have to sleep in the livingroom which is also the dining room and den unless you share with Sarah) and has no central heating. but already i'm used to the cool temps in the house. I no longer have that vasculitis that made me miserable in the cold. but make sure you come with sweaters!

also nice is the neighborhood, people are friendly and relaxed.

Open Studio was great fun and i even sold a few things. it was exhausting, but not as stressful as this move! I really want to spend time making mixed media and not worrying about marketing for a while. i want to find community to feel a part of, but of course this is not the time of year to do that as colds and flu season is upon us!

We just moved from SF to Berkeley Ca, right accross the bay. We had planned to live in SF just two years but it got drawn out because of the bone marrow transplant. It's great to be back here where i have friends and trees and very funny halloween characters coming to the door. i had none of that in SF. I was born in Berkeley and moved here with my family in 2001. we moved to SF for my daughter's hi school. So in returning to Berkeley, we found a lovely little cottage on a tree lined street within walking distance to three grocery stores (although in my current condition i can really only walk to one!). coffee shops, and many inexpensive stores and eateries not far away on Telegraph, the UC Berkeley student hang out zone.  on our block all the cottages have front stoops and people hang out there, under there eaves in the blessed, much needed rain.

i'm so happy!

recovery is a very long road

I'm amazed at what a long road recovery is for me. everything is going about as well as it can go and yet i'm still not recovered. I forget that and i push too hard. Although the Open Studio was alot of fun - and thank you everyone who came! - it was too much for me.

the process of sharing my work and offering it for sale, and thus for judgment, is taxing mentally and physically. and i wasn't ready for the stress. I'm happy today because of so many nice things that happened, but i am completely wiped out and don't feel well at all. you know, nothing specific, just a large dose of ick!

maybe Sarah will give me a Massage now that she has her certificate, and we still have Julie's table (thank you for the loan Julie, you are a doll).

but for now i think it's time for a nap.

more progress!

the other day i went for a walk on the beach (I am so grateful to be able to do this again!) and part of my routine involves wiggling my arms to use my back muscles, stretching my legs, walking sideways, and attempting to squat. I work on squatting at home too when i do my sit ups and leg lefts etc. But at the beach i have the real life challenging conditions that i have enduring a photoshot, we shifting sand with a wave you'd like to avoid coming at you.

So i can get down in a squat, like i would if i were taking photos, but i had been unable to get up without pushing off. well that's no big deal after all i've been through but If i want to take pictures like i used to i have to be able to get up without touching the sand and risking getting sand and salt water on my camera!

so the other day i got up from a full deep squat just using my legs! hurray!

of course i couldn't repeat the move, but i'm on my way.

As I said to Sarah: "a photographer who can't squat is just taking pictures!!"

kayla threaded a needle!

I think this news should be front page of the New York Times!

I threaded a needle! hurray! this is after months of shaking so bad i could hardly get food to my mouth with a spoon!

I'm having so many positive experiences like this that i'm too busy living them to write about them! I successfully negotiated chopsticks, I made a dinner almost completely by myself (someone drained the boiling noodles). I learned how to use the sewing machine i bought about a year ago but was too intimidated to use. (i still have to learn all it's nifty tricks but i got the basics going).

All this indicates to me that my brain is repairing: the increased physical coordination (not shaking and having control over my grip etc); metal concentration (a big part of making dinner for me is not burning down the house cuz i forgot what i was doing); learning new things (which involves memory, focus, logic and such) are all areas that were affected by the transplant preparation and immunosuppressants. I wonder if i can get a new brain scan to check for repair of those areas....

I'm so busy getting ready for Open Studio next weekend. i've posted some info on the "art" page on this site and you can see my works at my new website daydreamingarts.net but you should see these new images handing huge in my living room!

peace,
kayla

Doc says I'm "A Winner!"

So Friday I went to see my Stanford oncologist, Dr. David miklos. He proclaimed me "a winner" because my test results are great. Specific blood test results for August and september have been posted at Google Docs.  this speadsheet is coming up on it's one year anniversery, but has info going back several years. I have such goo cell counts like none i've ever had with out a drug boosting blood levels or a transfusion!

Friday i also found out the results of my most recent bone marrow tests which were all great. Miklos pointed out in particular: NO BLASTS!, normal celluarity for my age - 50%, and an "M:E ratio of 3:1" (that surely means the ratio of precursor white blood cells (myeloid ) to red (erythrocytes). Oh good, i Googled the term and found this:

"1. the ratio of myeloid to erythroid precursors in bone marrow; normally it varies from 2:1 to 4:1; an increased ratio is found in infections, chronic myelogenous leukemia, or erythroid hypoplasia; a decreased ratio may mean a depression of leukopoiesis {WHITE CELL FORMATION} or normoblastic hyperplasia depending on the overall cellularity of the bone marrow." at MediLexicon http://www.medilexicon.com/medicaldictionary.php?t=75938 .

There was some weird stuff found(reactive lymphoid aggegates) but the doctor said it's just my donor cells working hard during this transition. i do not have focular lymphoma (which is one thing that will come up if you google that term).

I have much more to say about stoping immunosupressants etc, but i am happy to say i'm too busy to wrwite now!

more soon!!

kayla

fantabulous news!

Yesterday I got home from taking my college aged son for his biannual shopping trip to find a fantabulous message from my doctor in Stanford: The results of the chimerism test test came back and the last white blood cell line that was lagging a bit is up to 98% donor cells! the transition to donor cells is essentially complete! hurray.

to explain the best i can, Stanford is testing the diagnostic value of this test, so officially it has no real meaning yet. Still their data show that folks who have had a non-myleoblative stem cell transplant like me are much more likely to avoid return of their cancer if all the lymphocytes convert to being produced by donor stem cells. a person can feel fine and do well concerning recovery and graft vs host disease etc while existing with both their own cells and the donor cells. but for the procedure i had relies on the donor cells being aggressive enough to wipe out all my stem cells and replace the workhorses throughout my body. the lymphocytes are the last to convert because they are made mostly in the lymph system not the bone marrow, and the particular B cell line that was lagging for me is  the last to convert because it's what's being suppressed by the immunosuppressants.

So this last line of B cells was at 85% from my last chimerism test. The Dr. Miklos had already explained to us about what we would do if it did not come up by 6 months or so. It involved chemo like treatments and a stay in the hospital of about a week. even better, i'd get to do it in a Kaiser hospital not Stanford (sarcasm dripping).

Having this possibility looming has not been pleasant, and so i'm ecstatic to learn that even before the 6 months is up (this Friday i believe), my results from the visit on the 15th showed 98% which is complete from Stanfords point of view!
yeah!!!!

I'm grateful for the wonderful medical progress i've made and the fine care from Stanford the Kaiser has paid for.
kayla

no more prograf!

So i saw my Stanford doctor last Friday and he told me to stop the last of the immunosuppressants! so this is great cuz i'm working on being normal, but it's a bit nervous making cuz now we wait to see if i will get any chronic graft vs host disease. I can get that just because the graft does like me that much, or because i force my immune system to work too hard by getting a cold or something. So i'm still fairly isolated.

Lately I've been amazingly sleepy and tired sleeping 10 hours and then needing a nap. I've been doing some work, about 4 hours a day when i work, weather printing or trying to make my new website behave! (if you are curious, the in progress site is daydreamingarts.net it works fine on my computer but others have problems with the images not coming up right.

One of the greatest things about Friday's visit is that he told me i can go for walks on the beach, go hiking ans go camping if it's quite civilized. So i can work again to get new images. I've not used the camera since my transplant and it'll be so great to get to it again.

This morning i went for a short walk on the beach. i went to the end of Sloats boulevard, and for those of you familiar with Ocean Beach you know it's a huge hill to climb down and back up. So going down and walking along the Ocean watching the surfers and the dogs chasing balls was fab! but this bee thought my coffee was the nectar of heaven.. now i'm so glad to see a bee anytime cuz their population has definitely crashed, but i'm not keen on being the object of desire like that. so i had to climb back up the dune to deposit my cup in the garbage, and i knew that was something i could only do once this morning, so i packed it in.

It was lovely to have sand and salt water on my feet!

I'm greatful for the wonderful progress i am making and for fog and sand and ocean ... and bees.

working but not at top speed

So it's been forever since i posted anything mostly because not much is happening health wise and i've been busy trying to work. I was doing great printing things out, finally got in the grove, and planning to work on my website (kinda like making endless lists of things to do), but then the work i was doing for altered barbie grew exponentially. The expert never showed so i'm fumbling around trying to build a store for the show but there are too many things that i have to do perfectly - and i'm just not that good at precision! Seems like the more i fix the more i break.

speaking of breaking things, I saw the doctor about my broken foot bone, which is mostly healed. I mentioned that my 12 year old break hurt me more than the recent one so he took x rays of both. I'd never had a follow up xray of the first break and this one shows it healed all wrong. i now have two bones rubbing against each other when i bend my foot and the tendons and what not are permanently inflamed. He recommended that i get these particular inserts for my shoes that will give much more support and reduce the pain. other than that there's cortisone shots.

I've reduced my Prograf by i/3 and i guess i take another drop soon. i'm off most of my meds, but i want to take something for my stomach which hurts alot most of the time. I don't see the doc again until end of august, but then i get a bone marrow biopsy and other good stuff.

i'm grateful that i've been able to work and think about showing my new work.

kayla

"doing great!" says doc

Last Monday I saw my Oncologist at Stanford Dr. Miklos. He says i'm doing great! I'm doing better than any MDS patient in the trial so far. at least on paper!
We discussed how lucky i was to have the migraines as a warning the the cyclosporine wasn't playing nice. It could have been seizures or a stroke. He also explained the mechanism of what went wrong, having to do with how cyclosporine works, suppressing messages. it works 10 times more on the immune cells than on brain cells but it does affect messages being sent around the brain too. 

We discussed my chimerism (the mix of my blood cells and the donors blood cells) and that's where i really shine among MDS patients. He explained the the one line that wasn't 99 or 100% donor was among the lymphocytes. they reproduce slower that the neutrophils so it's ok that they are lagging behind and they may correct on their own.

nonetheless, he explained how sometimes the donor and my lymphocytes will adapt and live happily side by side. were i a liver or lung transplant patient that would be fine, no harm.

but these are the very cells  that are credited with carrying the cancer info in my system, so if the donor cells don't eliminate them, we have to. Fortunately they have a protocol, which sounded like chemo to me but it's much more specific. it changes the protein expression of the lymphocytes so that the donor cells will attack them for sure.

He informed me of the additional results from the last bone marrow biopsy. last time i had the info at the cellular level, showing a lack of blasts and healthy cells. Monday he told me that the genetics came back perfectly normal! no more genetic mutation! well at least among the cells they studied.

i told him the story of the broken toe, showed him a small rash, discussed the fading symptoms from the cylosporine (i still get dizzy, my shaking is much better but still evident), and all the itchy symptoms i had during the change to prograf.

my blood work is great you can see it at Google docs http://spreadsheets.google.com/pub?key=p<wbr />vGkzQaTptl6F1cFLcrGzPg

i'm doing so well that i don't have to go back for a month! we taped me off of some supportive drugs i'm on like stomach medicine and we will begin to taper the prograph soon. we even scheduled my 6 month bone marrow biopsy!

more soon,
kayla
I'm grateful for my loving daughter who communicates so well!

about those photos

Those photos are taken with the little camera on my mac. cute and easy- but they are all reversed! i don't know if i can change that without going into photoshop, but rest assured that i'm not driving and we have not slipped off to England!

refections on transplant day

Transplant day was a weird day for me. i was very excited and fine with the rhythm of the day as the described it. first the daily routine of vital, blood draws and my IV antibiotics. Then they'd pre-medicate me for the transfusion. all this went smoothly except that i was having a very hard time with my stomach, loosing the meals eaten earlier in the day,
when the transfusion came it was great at first but soon i started in with severe nausea and a pounding headache. my concern was weather it was migraine related, which i though might include reacting to the cells. but with the nausea coming on first we decided it was a reaction to the presevatives in the blood cells - like on huge MSG headache!
So i hung in there. i had so many medications in my at that point that i said i preferred not to medicate this if possible. is i tossed and turned and moaned and groaned and was greatly relieved when the cells completed and all the symptoms began to abate. this is whan i had Morey send out messages the the cells wer ein and i was resting uncomfortable..
so they had me hang out for an hour in case i hand a reaction. then we went home and i was exhausted and kinda keyed up. It was Shabbat so Morey cooked 2 dinners, the bland for me and the fist for everyone else. i ended up having some of that fish.
The next day i felt on top of the world. i was really happy and the only thing dampening that feeling was the nausea for all my medications.
At this point i have to come to the clinic everyday, even when i'm doing well. yesterday they wanted to give me a day off today but i had an IV antibiotic i must have everyday.

Day in the ITA

So Morey is typing for me today because my typing has completely fallen apart.  I'm in the ITA now getting the infusion of my donor's stem cells.  The cells are going from a bag into my central line (like an IV blood transfusion).  we were trying to guess where the blood cells came from and we suspect that it's somewhere on the west coast.  The stem cells were drawn at 2:47 pm PST and were put on a plane and arrived here sometime around midnight.  So how far away could it be?  The volume of the blood cells is 274.6 ml.

so receiving the stem cells has not been problem-free.  so far it's caused me to throw up a couple of times and I have a bad headache, but because the nausea came first we're thinking that it's not any kind of migraine.  I'm getting weird urges for things.  How about a Snickers?  When I can't even keep my rice and banana food down from lunch. 

Right as they were about to hang the cells, my two friends from San Jose arrived.  They claimed to be "stopping by" but clearly this was a well-planned visit as they came bearing gifts.  So after they hung the cells we took pictures of all of us by my IV pole, with the cells hanging in the foreground. 

 

Today is the big day!

Today is the big day!

I get my new stem cells at about noon today.
yesterday i had two rounds of radiation, but they had to be 6 hours apart so we hung around the ITA for those six hours.this is the final preparation for the new cells. in the afternoon we were told that the cells were safely on a plane and would arrive at Stanford at about midnight.

so today they have me here at the ITA several hours early to get pre-medications: benedryl  and a strong steroid. then when i'm ready they will transfuse them through my central line, just like a blood transfusion but they drop them slower.

more soon
kayla

Wednesday's update on Wednesday!

wouldn't it be a wonderful thing if i could post Wednesday's update on Wednesday.
So today i woke up naseuas even tho my darling husband had delivered a cup of joe to my beside. I asked him for meds and moved on with the rest of my morning meds. i ate breakfast, toaster waffles with apples sauce and then got readying to go. there's my morning mouth care, care of my catheter, extra loving care for my skin and dressing in a loose and comfortable but flattering ensemble! i got all confused because i'm supposed to where sun screen when i'm outside yet i'm not supposed to put on cream before the radiation. so i ended up washing it off. i wore my hepa filter mask, looking like a space alien i added to the goofy look with a straw hat to keep the sun off.
Morey backed a hot lunch for me and filled a travel bottle with water boiled yesterday.
i saw radiation about 40 minutes on the table and then when up to the ITA where we got a single room, like the one where we trained, instead of a recliner in a communal room. the recliners are much more popular than the little beds in the cramped room, but i really planned on sleeping so i was happy.
The ITA starts by taking your vitals, usually a nurce's assistant. then the nurse comein and asks how the last 24 hours have gone, energy eating, fluids, painetc. he'll take blood for reseult we shou;;d expect before leaving. these tests include cell levels and levels of drugs in your system. Some drugs are best regulated by watching blood levels rather relying on basic height and weight. I have a new drug, an imunosupressant, that is of this sort so i wait fro the levels to be drawn before i take my next pill or it would only reflect the recently taken ill, not how i metabolize the pill.
done with us for a while the art lady came in _ HURRAY !! i felt like a little kid and i got to make two drawings, one with oil pastels (are they safe?)i kick Morey out so he could concentrate on his work which was fine til the doc came in and he wasn't there. She's a doctor's assistant of some sort. she wanted to go over the meds again with him, but i knew she's said nothing new. just reemphsiszing the stuff that she said yesterday and all the hand outs and books say.
After she left i was able to call him but we only spoke with our nurse after that he when showed me my counts, non requiring transfusion for sure! but with .03 WBC my neutrophils are considered non countable!
feeling ok and well cared for by family and friends and medical worked.
kayla

update from home!

again my apologies for not posting in a timely manner. I had very little energy in the hospital to do much more than sleep. i want to thank everyone for there thoughts a nd prayers, cards emails etc. it all really matters to me!

so right now i'm fine, kinda surprisingly weak and shaking. Morey had driven me down this mourning for my first outpatient ITA (infusion treatment area.) this is were they draw labs and give medicine you cant have at home, like IV antibiotics, blood transfusions. i had my visuals take by a nurses aid, labs drawn through the catheter and antibiotic given by IV. i was also participated to take part in a phase 11 study having to do with CMV which seems like the scourge to BMTs, Only in a phase 11 trial i might not be getting the drug. it the have something that's been working than i don't want to be part of a side effects study! i will build false confidence the i'm protected from the CVM. how ever i will probably do it cuz it's the right thing to so to help with medical science and so on.

after the ITA we went down to radiation therapy for my daily radiation. i was so turned around one i got inside. i'd seen the changing area out patient but all the treatment rooms i'd only seen for my wheelchair. so it was odd walking into the treatment room. treatment was the same as ever, but the radiation's starting to build up. i only had three more treatments - 2 on thursday... transplant Friday!

The time in the hospital was mark by nausea! it was more than the treatment they were giving me AGT, which definitely made me sick the first time in particular. but just being there all the smells big and little. Their hand soap, their sanitizes, the flushes they use on your ports, the smell of food that's not cooked with attention and gets reheated more than eaten, the smell of akk the offings in hats waiting to be counted and analyzed, and they are so fabulously weird because of all the medicine everyone's been taking, the smell of the spray that intents to cover the smell of the hats! So no wonder i needed gallons of anti nausea medicine just to to when i could hold down my pills!

My experience since being admitted was that on Sunday i received pre-medications. On Monday i received the ATG as a drip that lasts 6 hours and is repeated over 5 days. they do this in the hospital because it makes almost every one very uncomfortable (like a really measurable flu) and it has some life threaten reaction.

So i was very sick after the first round and the nurses and doctors were quite busy given my various meds and keeping my potassium stable treatments went easily. but then i ran a fever nit relating to a dosing, the timing was off, and then a second fever. so the asked my coughing mom to leave. and required me to stay 3 extra days,i wondered briefly if i could run another unexplained fever while my mother was away they'd let her back in! but of course i'd be in so much longer that way!

Starting Tuesday after presidents day they started the TLI the radiation. I'd had several preliminary visits with them so they had my whole body mapped out with shields for the areas the should receive no radiation and focused beams toward the lymph system. laying on the table was difficult so the techs learned to cover me with a blanket. then the time on the table was almost interesting - but you can't turn you head to see what's up so your limited in what you can see.

The treatments did not seem to have any effect until this week when in made me exceptionally weak! when i'd received the treatments in patient i only had to get into the wheelchair, then plop in bed when i'd take a shot nap. but today i had to go back upstairs for a quick lunch and then we went back to the ITA,  where we were told i was good to go - no blood transfusions today. this was alot of activity post treatment, mostly i remember struggling to get to the car and sleeping the whole time in the car. and i slept most of the afternoon wake up with that feeling that i was late for my next ITA appointment.

the late afternoon tho i did raise some normal type things, like figured out what to make for diner and asked June to make it. My platelets are quite low, between infusions they've been hitting numbers like 6 or 7 thousand which is below the point at which one could spontaneously bleed. and when they give me platelets it brings me up to a still dangerously low level should i cut myself. so i cant cook yet.

then we had a great diner, how much more fun to eat with others and i rested with my laptop and watched a movie. so much more up and around at home where there's so much going on.