instrumentation

i hope to make this my last post on this subject for awhile. it's really depressing me! when the doctor describes the procedure to be done in the (hopefully) far distant future he calls it: "an anterior fusion L3-S1 and posterior instrumentation T10 through S1 - pelvis"

so "anterior" is from the front

L3 - S1 is from the lower back to the sacrum

fusion means they use pieces of my bone to put in place of my disks (the flexible part of the spine) so that the bone will grow to replace the disk and fuse the vertebra together. so that would be 3 disks and 4 vertebra fused from the front.

if you look at the colorful spine picture below you see this part of the operation represented by the turquoise line.

posterior is from the back

T10 to S1 - pelvis is from the mid back to the sacrum and then to the pelvis. if you look at the colorful spine picture below you see this part of the operation represented by the orange line.

but what everyone really wants to know is "what is instrumentation?" so the recently uploaded black and white exrays (on the right hand column) of somebody elses spine should give some idea.

the top set really show the body around the spine, which is nice - it's so easy to get lost in xrays. there's a shot of the persons scoliosis before the operation and then two pictures, one from the side, that show the medal parts. it's a bunch of rods, hooks, screws, etc. and it's placed about where mine would be.

right below that is someone else's spine after their operation. it's closer in so you can see the hardware better. from the back you see two vertical rods and a couple of horizontal braces and 2 screws going into each vertebra. from the side you can mostly just make our the screws.

it's so lovely!

yesterday my back hurt again and i got really blue thinking that the pain relief from the steroid ingections wasn't going to work for long. but today i have more "coverage" so i will take the ups and downs more in stride next time.

i've been doing lots more catch up health care, so much had to be put off! so that will be the next subject - part of recovering from a BMT.

More about my back

I've had time to do research and ask questions about my back. first off, the 43 degree cobb angle in my back is pretty darn significant. a few more degrees and the choice to avoid surgery is gone. the image above shows how to measure a cobb angle. the doctor looks at the exray, finds the two most crocked vertebrae in your spine, draws a line from each then draws a line at 90 degrees ffor each and when these two lines meet they create an angle. aas a matter of serendipity the one i found shows a 43 degree angle.

I've discovered alot of anger about all this. it started in Davis where no one measured the kids, and then in stony brook where the school doctor diagnosed scoliosis and assured my mom that it would never progress.

it was important to me the notion that i had non progressive scoliosis, and i hung onto that dispite my subjective experience of the increasing intesity of back pain.

I also remember the physical therapist before the one i have now measuring my scoliosis from the outside - putting some gadget on my back, and saying that my curve was not significant.

anyway, i've had many heath care providers reassure me that my back was fine and offering me some mild pain relievers. but i know that this change did not happen over night.

so i wonder why am i angry? except for bracing while i was still young what could i have done differently? humm, maybe have this operation while i was young and healthy and not have to deal with the pain all these years. but it's silly to be angry cuz here we are, i can't go back and fix it!

however, i have gotten some temporary relief from the steroid injection into my epidural (where they block plain for child birth) so i'm very happy about that! the amount of pain coverage grew slowly til now i can stand for an hour!!!

i'll post more info on the operation, even tho i won't get it for quite some time.

my bad back

Today i got good news about my back - it's not so bad that i'm required to have an operation this year! my oncologist at stanford said it would be better to wait because iit's an extensive operation.

Yesterday i met my orthopedic spine surgeon and he explain alot about the mess which is my spine and validated that given the state of affairs it's not surprising that i'm in pain and have so many different types of pain in so many places. this is a funny kind of relief because in a way i'd rather be the hypersensitive nut my physical therapist thinks i am! but it's nice to not be a nut!!

his diagnosis of my back is degenerative thoracolumbar scoliosis, which means that i have a curve that goes from my mid back to my lower back. and that the curve is progressing because my spine is degenerating. to fix it i would need a two part operation. first they'd go in from the front, move my organs out of the way and put bone pieces in my disks so the disks will fuse the spine together. they want to fuse L3 through to S1, 4 disks. then they sew me up, flip me over and and go in through the back and do more stabilization with bone graphs and put in instrumentation - lots of screws and plates and pins from T10 to S1 & the pelvis. this is to hold me together while new bone grows and solidifies my back. see the diagram for the location of the numbered disks with my indications of approximately where they will be working.

so this is pretty darn scary to say the least and i'm so grateful that i'm not forced to have it right away because it's not clear i could handle that much stress on my immune system.

my main man!

So he's the one that held me together the last year and a half. he's the one who manages the meds., the middle of the night disasters, the food things and the cleanliness things, the emotional upheaval things, the other kind of upheaval things, the phone calls and emails to doctors, the communication with family and friends, the working from home and the feels like single parenting cuz i have to make all these decisions by myself thing, the day in and day out for 6 months at home! thing, the driving and the walks and the fear and anxiety as a crashed right in front of his eyes thing. 

i could go on. but here he is being an angel again - waiting for me to finish messing with my camera! "i'll just be a second hun" is the time to take out his penny whistle and meditate!

gratitude

I'm not going to list all that i'm grateful for - the list is too long! but i wanted to think about gratitude as a form of healing. i once had a friend who put her daughter to bed every night with a review of the day from the point of view of what they were grateful for. she always started with simple things like she was grateful that her favorite bagel was available that morning. so it didn't seem sanctimonious. her daughter loved it. it was a special time with her otherwise busy and powerful mom, and she ended each day finding something positive in her life -even when it was a bad day.

I was not so creative or spiritual. when my kids insisted they'd had a bad day i brought up something good that happened ... yeah i'm sure that went over like a lead balloon. i didn't really validate their feelings that way. so i tried that thing where you repeat back what someone has said to you so, hoping to validate their feelings. well perhaps it did but it also brought on a major pity party. the end of the day it can be so easy to fall into a negative spiral.

I never thought to look at gratitude, because i wasn't grateful. i knew my life was better than many - i worked with homeless kids in east harlem so i really knew the difference. but still i felt that my life was too hard. i had too many struggles so i was always stressed. i think the first time i really felt full of gratitude as an adult was the first day of chemo back in 2002. then i felt how precarious my life was and how amazing it was that the chemo they were giving me they wouldn't have had even 5 years before.

so i had less but my heart filled with more! which is sort of how the compassion thing works for me. there's this zen exercise in which you repeat the wish for various categories of people to find happiness and the root of happiness. you start with thinking about the people you love, then move out to the person you have neutral  feelings about - someone you pass on the street, then you work toward wishing happiness to people who piss you off and your enemies (do people still have enemies?), and then all people, all souls etc. but i left out the hardest one for me - wishing myself happiness! the first time i couldn't even sub vocalize it! there are i think 4 of these exercises where you wish for love and freedom from struggle and so on, and each time i wished a blessing for myself i choked up!

but i learned more compassion for others and myself by repeating this in difficult situations. and having compassion for myself seems to be right next to feeling gratitude for both my struggles and my easy times.

not al progress is forward????

OK so i've had a tough few days. i little reality testing i guess. although i did hike the full loop to laurel canyon recently (about 3 miles up and down) when i walk a 3 mile loop to downtown and back i was a wreck the next day. i could barely walk the block and a half to the store.
this lead me to really reconsider the death valley trip. i'd received materials from them showing what a full day they had planned every day for a week. and i was trimming the RV rental to essential days to save cash, which meant 10 hours of driving in one day -
i've been doing alot of driving lately because of my daughter's move back into the city - we keep meeting over details. anyway, now i know i can't do alot of driving without become incredibly sleepy. so i'm back to sleeping 12 hours at a shot!
however, a lovely friend of mine who's a transplant survivor has invited me to visit the zoo with her next week. there you go. aperfect level of activity for me!
and i just had a whole "texting" conversation with my daughter, she invited me to dinner (my treat of course)!
March 2nd is my next bone marrow biopsy. coming up fast.

getting in shape

so i've started to increase the amount of walking i'm doing. it started with going to my daughter's hilly college, dashing up and down steps trying to keep up with her (she of course, was walking slowly on my behalf just so you know how out of shape i am!) then we've been going up and down the hills of San Francisco and the many stairways in the homes she visited looking for a room to rent near her college.

And she's twice taken me shopping for clothes (her's tho i assure you i need them more) in downtown san francisco, where i refuse to pay for parking so we end up walking a good deal. We had to get her ballet slippers and what not for that class, and we still need to get an exercise mat for another.

then i added to my walk to the coffee shop the other morning by going on a hike in laurel canyon. this is one of my favorite places to hike near Berkeley as it's very quiet, not a popular spot, but really a beautiful canyon. the hike is challenging too, with many ups and downs and some quite steep. i was ecstatic to get to the tiny waterfall and climb back out again after a peaceful visit. today i think it will be warm enough for me to go again.

soon will be my one year anniversary! i will be able to stop the anti biotics and anti viral medicine i take. i recently stopped the blood pressure medication and i'm fine. and i will have all my restrictions lifted. i will be able to go to synagogue! i'm really looking forward to that.
well that's all the news for now,
kayla

busy adjusting

i've been busy adjusting to new things. We moved back in the middle of October and we still haven't finished unpacking. I spend alot of time unpacking though.

My son was home for winter break and had to sleep in the living room cuz this place is small. i spent alot of time with him and my daughter. We went on vacation in Yosemite and had i nice time up there. we went to the movies tho i don't remember what we saw!

my daughter's starting college on monday and still hasn't found a place to live, although we've been looking al last week. She's returning to the city where she much prefers it. near her college there are tones of students sharing apartments. there is a very wide spread as to the size and privacy and sociability levels so there's alot to see. we also wandered around her closed for the break college and she got inspired. most of her classes will be in a brand new building that's really beautiful. The campus is very hilly and i got a real workout going up and down all those stairs! the work out continues as most of the places for her to rent are either on a hill or the third floor or both!

I had my camera stolen and the insurance company did not fully cover my loss so i've bought a new camera but mostly not all the gadgets i had to go with it. and of course the camera has changed and i'm working hard to get used to it before my week long trip to death valley with a photography workshop! I'm so excited. I'm renting a VW bus and staying in a campground. the folks who teach the workshop will gather us mostly at dawn and dusk so it' will take alot out of me, but it's a great opportunity as i'd never go to death valley on my own!

I've been mostly healthy since the flu even though both my husband and daughter had bad colds.

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

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.

getting ready for the hospital

I stared writing this Saturday night, sorry i took so long to post it but parts were quite incoherent the first try!

well tomorrow is the big day - i go into the hospital on sunday and begin treatments on Monday. of course it won't happen exactly as planned cuz radiology is taking off presidents day! so while my ATG will start on monday as planned, the radiation (TLI) will not begin until tuesday, and at some point i will get a two doses in one day, just like i do on the final day of treatments. so transplant is still the 29th.

On thursday my mom took me down to Stanford for my radiation "fitting" - like when you do a final fitting for a wedding dress. The first visit to the radiation department, they took my measurements, not with a tape measure, but with cat scans an red light beams that showed the techs were to mark me.

For this thursday's visit the wedding gown was made - or rather the lead shields and programing for the radiation machine. so they put the shield in place and took digital pictures of me as well as x-rays, wearing the shields. this way they checked that it was a good fit before the big day.

the shields themselves were much different than what i expected. I imagined a lead form that would rest on my chest to protect my lungs, like a super hero's suit. Instead the shields are much smaller than my body and are suspended above my body between me and the radiation machine. the shield casts a shadow of non irradiated area on my body that is the same size as my body part, because the sheild closer to the light source than me.  Is radiation a light???? it seems to act like one.

So the tech very carefully arranged my body til it was their version of straight. this is hard because my scoliosis twists my body. but the important part is that i'm in the exact same place every time. this is why they tattooed me. She drew outlines for the shadow of the shields and other nifty lines on my body, but did not tattoo them this time. she took three different area measurements and pictures, up by my throat and thymus, my midsection where my spleen is, and my lower intestine where a complex grouping of lymph tissue forms and inverted y. i've found some interesting articles and pictures of the lymph system. Hopefully i'll have time to post them before i go to the hospital cuz i can't get online there.

Afterward i was really wiped out. it's amazing how pooped holding still for 45 minutes can make you! So my mom took me to the super 8 motel where i'd reserved a room because my appointment was so early the next day. My mother in las June had arrived on thursday so she stay with my daughter and Morey came to stay with me and get me to Stanford on time the next morning. I intended to take a nap but Morey showed up about 15 minutes after i checked in. So we went out for and early dinner to beat the valentine day's crowds. We picked a great Mediterranean place downtown Palo Alto, and went to a movie afterward. it wasn't a romantic comedy so it was deserted!

The Super 8 was a good choice for us. with the AAA rates it was incredibly cheap. it was clean, had a microwave and a fridge, cable tv and free wireless. the heat worked and it was even quite cuz we got a room in the back. No frills but all the basics.

I couldn't eat after midnight, so the next morning i packed up with out coffee etc and Morey drove us to Stanford. we checked in on the third floor of the cancer center and then went down to the ITA (infusion treatment area) where they did all the pre op including starting a line. this was done in the same little exam room where Morey and I had gone for our training on caring for the catheter. I changed in to a gown and when the nurse came to start a line i told her that sometimes i'm a hard stick, i have small veins and sometime they roll away while people try to start a line. she looked at my arms a while and went and got someone else who put the hot pads on my arms. When this more mature nurse returned she got a line going on the first stick. i had my eyes closed as i was meditating, and she asked me "why are you smiling?" i replied "cuz i can tell you got it in one stick!" sure enough she taped it down and started the fluids!

The surgeon (?) who was doing the procedure came and checked me out. she was concerned about my low blood counts and wanted to see if my platelets in particular had dropped more. i told her that i didn't have much faith in the last platelet count because i was not as symptomatic as i usually am at such a low number. so while i bruise easily, i haven't been getting bloody noses or bleeding gums. she found my lack of symptoms reassuring. the nurse pointed out that they were ready for me in the room and transport came. So she sighed and cleared me. transport talked the whole way to the room. we left the ITA, got on an elevator, then took a skyway to the hospital, there we moved about but i was so busy trying to shut out transport's non stop babble that i really lost track of where i was.

When i arrived i was in a full sized operating room with machines and gizmos all around me. this was a wonderful change from Kaiser oakland. there i'd been taken to a room with six other people either waiting to go in for their procedures or recuperating. the nurse only showed up to bring the next person in or out. i spent over an hour listening to frighten children cry and an elderly woman vomit and groan during recovery..

Back in the present, the Stanford team was all women, which they noticed at one point as they were getting ready and sorta celebrated that among themselves. i really liked that! they were all patient and generous health care providers. the procedure was done with me semi conscious and with local while lying on my back and my head turned to the left. the catheter is run under my skin, from above my right breast and over my collarbone where it enters a major vein. I was in some pain, but because of the drape covering the side of my face they couldn't see me grimace, and it wasn't until i accidentally squeaked that a nurse peeked in my tents and said "would you like some more?" like a kid getting extra milk and cookies! so then it was easier.

this was also different from my experience at Kaiser Oakland 5 years ago. when they took me into the room for surgery it was no bigger than a closet. there was only one piece of equipment and the bed was against the wall so accessible from just one side the Kaiser the surgeon was a man and he seemed to really boss everyone around with a short temper. He gave me plenty of drugs so i felt quite pleasant, more relaxed than i'd been i quite some time! he positioned me on my side so i was naturally facing away from the surgery, and he hand me curl my legs or something so i wouldn't tip over.

At stanford they wheeled me into recovery in no time. i felt pretty good right off. i had told them that i've gotten nauseous for all my procedures in the past so they said they might pre medicate me for nausea. they must have cuz i was nauseous a bit and they let me go after juice and crackers. I was really dying for coffee tho so we went back over to the cancer center which has a very small coffee shop and very clean bathrooms.

when i got home i went straight to bed and slept like a rock for several hours. when i woke i was in very little pain. so i got up and made diner for shabbat taking extra care cutting the ginger and garlic in huge pieces so as not to challenge my hand - eye coordination. I was happy as a clam chatting with my mother in law when i got hit hard with what i determined was an asthma attack! I took puffers for that and then i had to take pain medication cuz the site started hurting like mad. so i was pretty screwy by the time we finished dinner and went to my daughter's senior thesis production. it was a wonderful time, even if i had had too many substances!

Shabbat i stayed in the whole day. Morey went to mission minyon, and had my Hebrew name changed to help  me through this difficult time. I'm now chava kayla rus. i was thinking chava rus, but Morey just could not imagine having to actually call me a different name, so this is for prayers only i guess. chava is the hebrew name for eve, and is associated with life.

On sunday i did my regular activities in the morning, ordering groceries and such and in the afternoon i packed for the hospital. this made me very anxious.  I would slide into times when i just couldn't think straight - all i wanted to do was run away! Eventually i have many bags to bring down to the car, food for when i'm nauseous or they don't have enough vegetarian protein. my laptop with music and movies, a huge back of personal care items like lotions and shampoo, books, art materials, and cozy bed clothes. I also brought some pictures of my kids and so stuffed things. barbara made me a great handmade bear. Lynn brought me a cuddly stuff flower and so on.

So sunday night they hooked me up and started hydration me. they ran blood tests and determined that my potassium was a little low so the gave me that. I was really tired and went to bed early, but the nurse came and gave me steroids which had me tossing and turning and waking at 4 am.

On monday things began happening. they gave me the ATG, affectionately known as Rabbit Juice. this is a 6 hour infusion. for the first three hours i was OK but then i started feeling lousy in the late afternoon. I was watching Pirates of the Caribbean on my laptop when the food came, so my mom went off to the cafeteria for her dinner. I just couldn't eat i felt so nauseous, AND there was this fresh tomatoes and salad greens on the veggie burger. So i put that aside and tried to watch the movie but the all over body aches and weird discomforts grew so bad that i just could not focus on the movie! When mom came back i started feeling better right away and then Beth came and made me laugh. she also showed my mom some of the secrets of the ward, like where to get heated blankets. They left a little after 8 PM and i immediately started feeling bad again. the pain and the fever were really but i guess i notice my discomfort more when i'm on my own. they brought down my fever with cold packs and vancomicine and gave me ativan for the nausea and perkesset for the pain. this worked well enough so that i could relax and cat nap wile they did many things to my, like taking blood draws, setting up meds, taking my vitals, and messing endlessly with the bandage over my chest tube. the site was oozing blood and so they redid the bandage and put pressure on it with a large container of potassium drip. this seems to provide the perfect pressure until my meds fished running and they could get into the bandage to put a clotting factor on the site of the bleeding.

so they were in and out all night so i'm glad i can cat nap through all the commotion.

today i go for my first radiation treatment.

words of encouragement

As I draw close to my hospitalization and the begining of my conditioning treatemtn i have received many well wishes. People have also responded to the news that i will be getting the nonmyleoblative conditioning. here are some of the messages:

Hi Kayla,
Thank you for sharing news about what's going on. My
family and I continue to pray that the procedures you
will go through will be successful. Your family is
always welcome to my home anytime. We share your hope
with love and faith,
Mina (who lives near the hospital)

Kayla,
Thank you for the update. We all wish you the best. I truly admire your spirit which I can feel through your words. Your spirit and positive attitude is the best medicine. I am sure it is what got my sister in law through her treatments and battles when she was ill. My best to you and the family.
Love Linda

Kayla,
We are happy to hear the good news and we are glad that things are moving along as you have planned.  Keep us in the loop.  Stay Strong!!!!!!!
All Our Best,
Arthur and Carolyn

Kayla,
Glad to hear there's something "easy" in this!
I love you and think of you often.
Allison

Great News - Keep it coming!!
Vince and Lilli

Baruch Hashem. I did not know that you were having a
transplant. May you continue to have strength and recover quickly.
Best wishes. We'll pray for you in Feb. and beyond.
Lior

Hi, Kayla.
Mazel tov on the good news and we'll be thinking about you--directing lots of positive thoughts your way--as you move forward with your stem cell transplant.
Love to you, Morey, and the kids.  Best for a refua shelayma!
Steve

Dear Kayla,
Thank you for this.  I have been wondering how you are doing and I did not know that you were facing this next challenge.  You sound really upbeat, thank Gd.  I will have you in mind for a complete healing and I send you and the whole family deep blessings for peace of mind and success through this phase.
Love,
Tania

I am so glad to hear things are on schedule for you.  If you need anything, pick up for S, food, assistance...just ask.
Jill

great to hear it, kayla! many thanks for letting us know!
xoxo, lori

i'm SO happy for you! way to go!
andrea

Wow!  I am so happy for you! Yea!
Love,
Carol

YESSS!!  (OK, I look reallly stooopid doing the Tiger Woods fist-pump, but just squint a little and go with it.) Congrats - that's wonderful news!
L & B


So glad to get your news!  I have to fly back to Rome on Saturday to help a friend who had an accident there to get back home to New York.  So I may be out of the country but I'll have access somehow to email, and hope to hear continuing good news from you.  much love, Francie

Kayla
Great news and keep the faith, sure it will go well
love
michael and greta

Outstanding!  I'm glad we visited and the good news gets back to me in 24 hours. Good on you!
Cecile

Long Day at Stanford

First i want to thank all the people who stop by my pages and a big hug to everyone who leaves me a message or sends and e-mail. it really means so much to me that people send good wishes and that my words my help someone else who's looking at a bone marrow biopsy.

I'm afraid i got so busy I didn't post for a few days. bottom line we are moving forward with increasingly busy days.

Friday Feb 1st Morey drove me to Stanford. the first appointment was not until 12 noon so i went for a short walk on the beach before we went. it was really nice to be out but a get tired easy so i didn't go far. At Stanford i found i was getting really sort of breath from walking the halls. first we walked all the way to clinic E where all the BMT docs are. I'm thinking that they but it at the end of this long hallway just to make sure we get SOME exercise! All we needed to do was pick up the paper work for the lab work etc. then we walked all the way back and out the back door to walk through the garden to the hospital. Having forgotten to bring the lovely directions Stanford had provided in their patient book we asked at the information booth. They sent us the wrong way so i sat while Morey went all about to get me to the right place. By was i getting dizzy and sleepy feeling. I had forgotten lunch and only had a couple of pieces of fruit in the car.

the EKG was a breeze once we found the right place and the xray was quick once we found them and got checked in. The changing room for the xray was really a linen closet and was a big contrast to the radiation therapy facility in the cancer center (more about that later). We returned to the cancer center and before i went in to get the blood draw Morey went in the cafe and got me a sweet pastry. I ate about 2/3s of it and went in and got my blood drawn, also a pee sample. they took many little vials of blood and i sat with my eyes closed, i no longer find it interesting or gross, i just take the time to meditate. the nurse kept asking if i was ok and when she was done gave me some canned orange juice. guess i looked a little pale, but really i'm a little pale all the time now.

Then we had some time before our next appointment, the catheter care class up in the infusion treatment area (ITA). so i read and Morey worked. when it was time we went upstairs and checked in. in the waiting area was one of those electric massage chairs. only the controls were mostly broken. so i sat in it and pushed various buttons that sometimes caused an reasonable response raising my legs when i asked, and some times causing unexpected and startling  actions thumping and compressing and ramming rods into my back. soon i found the most fun to be had was when i just shook the broken control and the chair would start up and do something interesting.
When we were taken in the back for the catheter class i tried to take in as much of the treatment area as i could but there was so much going on. there was a large room with several chairs for infusions and there were a couple of nurses stations. we were taken into a small treatment room with a bed, a couple of chairs, a hospital table, and a TV monitor. A sweet young nurse came in, i'm sorry i forgot her name. and she set up the TV for us to watch the demonstration video, when we we done watching we buzzed and she came back with the teaching kit. She had a rubbery upper female torso front. it was built like a mask and i was afraid i was supposed to wear it! instead she laid it on the table and we practiced on it's catheter as it lay in front of us. it was good to do because the catheter i had in the past was valveless, or the valve was incorporated into the ends. so i now have to remember when to open and close the valves as i flush it and change the ends. fortunately all the steps and the frequency for cleaning, flushing and changing is in our patient handbook. i didn't need to remember her words as much as i could focus on remembering the movements, holding three things and screwing something off at the same time and so on. it was also a good reminder why i wore a scarf when i did this. without it i am constantly shoving my hair behind my ears and that would require me to wash my hands again!

then there was all this excitement with the nurses, the lab had called looking for us because my counts were so low! the nurses decided that because i did not have a fever and our appointment with Dr Miklos was soon they would let him deal with it and tell us the details. of course that's the last thing you want to do with an anxious patient like me, tell me vaguely that something's the matter!

So i was quite relieved when we saw him and he told us tha my ANC was 200. He was surprised when i told him that was up from that last two tests! (test results posted soon). the remainder of our meeting with Miklos was very informative. I know we were going over things we had gone over before but now it was more concrete. This was the point at which i actually chose to be in the study, even though i had signed the consent it was clear that this was the big moment for him, as he formally "offered" this treatment and we discussed all the risks and differences between the myleoblative and the non myleoblative conditioning. i saw a sort of anticipation in his face the dissolved as i made it clear i was on board with it. and again he was ever so tinsy tenser when i asked about the dose of radiation. He's a funny guy, a caring doctor and very brite. But there's something of the overachieving student in him. he seemed almost intimidated by the specter of my mom the genetics and committed her name to memory. i just know he's checking out her publications! all of which makes him more human to me and sort of endearing.

I hope he's impressed with my mom's publications!

Preparing for radiation therapy

On Thursday Jan 31st my mom drove me down to Standford for an early morning appointment at radiation therapy. I met doctor Kapp and two of his students, we wnet over a ton of health information and discussed the treatment plan. He wondered if my donor was not a complete match because i was scheduled for 120 instead of the more usual 80. (the next day when i talked with Miklos he said the 120 is better for MDS and they are moving every one up to 120 anyway). Dr Kapp took way too long getting to us. how he was so behind in the begining of the day is a mystery.

It started with the student's exam, and he was very good. then he went to tell Dr Kapp his findings and was sent back several time to check things he'd missed or just follow up questions. the this student and the other one would periodically stick their heads in and tell us he'd be with us in ten minutes. I was glad mom and i had brought reading, and we chatted some too. When he came it was obvious how he gets behind. he was very thorough in the exam and in giving us detailed descriptions of what was going to happen.

From the exam area we were sent downstairs to the treatment area. Here we checked and sat in a waiting room as nice as a coffee shop witha view of the garden outside. when we taken from there down the hall to another waiting area where the nurse took pictures of me and showed me into the women's changing area. here was a locker room with lockers bigger than the gym i used to belong to on the Upper West Side of NYC and with locks that worked! the changing areas had curtains that pulled all the way closed and the whole place was spotless! hurray! after i changed we got to wait a short while in that second waiting area i mentioned til two nurses came and got me for a cat scan and all sorts of measurements. They let my mom watch as they used red beams out of a spy novel to determine what was straight and make marks on me.

my legs were held in in a Y shaped trough. my neck stretch slightly on a support that help my chin stick up. then they put three little stickers on me where they had made marks on my side and middle. then they all cleared out while i laid there and the scan did it's work. i'm never bothered by CT Scans. MRIs bother me cuz they are noisy. but the ct scan you need only stay still. Then when that was done the nurse (technicians?) came back in and used tatoe ink to stick a needle in each of the three spots to make permanent marks that they will use to line me up for all of my radiation treatments.

Baby Steps

So Doctor Breeden called me on Friday to report that he'd finished all the paperwork summarizing the last 5 years and gathering everything needed for the referral.
The Kaiser Committee agreed to the bone marrow transplant and referred me to Stanford University Hospital.
1st baby step complete; next baby step:
They will call in the next week or two to set up and appointment. (See the article below on Stanford's Initial Evaluation.)
Stanford will run tests to determine that i am healthy enough for the transplant. I'm not worried about those because i've had so many test results for organ function lately that came out normal. And set up a treatment plan which will likely include a search for a matched donor.

Stanford's Initial Evaluation

from Stanford's Cancer Treatement Center website: http://bmt.stanford.edu/patient_care/initial_evaluation.html

The initial evaluation process begins with a referral from your hematologist or oncologist to a BMT Physician. After this conversation, the Stanford BMT Program New Patient Coordinator will call you with an appointment date and time.
The visit for the initial evaluation is designed to provide you with information about blood and marrow transplants. Various factors such as your age, prior treatment, overall health and disease status are discussed. These factors determine if you are eligible for BMT, and ultimately the type of transplant most appropriate for you.
This initial clinic visit usually takes between 2-4 hours. During your initial visit you will meet a BMT Nurse Coordinator/Case Manager and the BMT Physician will take a detailed medical history, perform a physical examination and recommend the various treatment options for you.
You will see a BMT Social Worker during your initial visit, or at a later date. The BMT Social Worker will conduct a psychosocial assessment and discuss the non-medical aspects of the transplant process including your support system, caregivers, housing, work issues, disability and leave programs, and generally how well you are adjusting to your illness and treatment.
After your initial visit your history will later be presented to the entire BMT team. The team will work together and determine - based on your disease, history and other factors - the BEST treatment option we can offer you. In some cases, this means that your treatment plan may change from what was presented to you on your first visit.
If you proceed with transplantation your BMT Nurse Coordinator/Case Manager will facilitate your pre-transplant testing, establish your treatment schedule and help coordinate your care.

Next Steps

So now that we have a definite diagnosis and a fairly rotten prognosis, we look forward to what comes next.

First, Dr Breeden writes a report that includes all my history, including the AML in 2002-03 and all the low counts since then. Then this report is submitted to the Oakland Kaiser Bone Marrow committee and they put together the referral to Stanford. This takes a couple of weeks.

Once Stanford has the referral package they will call -- no sooner than two weeks from now and make an appointment for us to go down there - how soon we can't say.

When we meet with them they will go over treatment options such as what sort of transplant and conditioning regime i might have.

At some point they will take new extra special blood tests to thoroughly type me for the transplant. Once they know that the can begin the search.

I will post a link to their website which shows the timing of some of this. It's not fast and if they don't find a match right away, it could be awhile.

In the meantime, Breeden has me checking my blood counts every 2 weeks and i see him again in 6 weeks.

My Complete Diagnosis

Morey and i went to Oakland this morning and meet with my Oncologist - Dr Breeden. Great Guy- saved my life in 02 - 03!

Anyway, the results are in and my diagnosis for MDS is confirmed. We are really glad it's not AML again because while MDS is a bad diagnosis, returning AML is worse!

So, if you've been reading the scientific material i've been posting you'll know that there's an IPSS score that tells us how bad it is. On a scale of 1 - 4 with 4 being the worst, i have a score of 3.

it's a funny scoring system where you add up numbers and end up with a risk score of either "Low" Intermediate-1" "intermediate-2" or "High".

I get zero points for bone marrow blasts! hurray!! they are below 5% ( thought they were higher so i'm glad to hear this).

I get .5 points for having 2 cytopenias (how many blood lines have reduced counts) I have clear cytopenias for neutrophils and platelets  -- and while i'm sorta anemic, it's not low enough to count as a cytopenia).

but the biggy is the 1 full point i get for my Karyotype. My the broken genes include a translocation between 1q and 7p resulting in trisomy for 1q and monosomy for 7q. the t(1;7) translocation is considered a variant of the 7q deletion, mostly found in MDS and some AML (subtype M4 or M1). It's frequently found in secondary MDS and AML. The translocation is associated with a poor prognosis.

But i don't have a poor prognosis cuz my blasts are OK i end up with an intermediate 2 risk. As a "young" (<60!!) person with an intermediate 2 risk on the IPSS I have a median survival of 1.8 years. Median means that half the people with this diagnosis will still be alive at 1.8 years. (but then the median time for transformation to AML is just a bit longer than that.

So in my view it's not an option to go untreated. and the only viable treatment option for me is a bone marrow or stem cell transplant.

Getting Anxious!

I guess it's pretty inevitable that i'd be getting anxious about my visit with Breeden - my oncologist, this Wednesday morning. I can't imagine what he'd tell me that would be a surprise at this point. I expect he will confirm the diagnosis, tell me details that i won't understand til i research them, like the cytogenetics, and refer me to Stanford MDS Center. So given that i think i know what's gonna happen already why am i anxious?

Bone Marrow Biopsy Complete

Well i'm very happy to be on the other side of the bone marrow biopsy and aspiration! I'm so sore! I took some pain meds to sleep but i want to be able to do something today so i've yet to take any pain meds - which always eat up motivation and make me quite uncoordinated.

Anyway, yesterday's procedure was interesting cuz the doc had two students with him. So everything he did he explained. Usually the docs will say things like "this will be cold," "you will feel some pressure" and what not.

But this was much more interesting.
The doctor explained to the students why he chose the spot he did.
then he explained that while some doctors will simply numb the flesh around that area he's one of those who takes the needle all the way to the bone (mind you the doc is using fancier terms that i don't remember). The reason he does this is so he can confirm that he's chosen a flat spot and is approaching it at the right angle. Suddenly i don't mind how painful that shot is! i'd rather him find any mistake at this pint than to have to redo it.

When doing the aspiration, he explained that could tell that he'd gotten what he needed and not just blood cuz it hurt me. he explained that withdrawing blood alone doesn't hurt. he also mentioned that the tech person checks it to be sure that it has the right appearance that he didn't rely on the patients reaction alone.

During all this i was making what Morey calls my puppy noises. One of the students murmured something that i guess was supposed to be comforting but really was part of that young doctors need not to hear my pain. So i said it was the doctors' job to hurt me to get the sample and my job to make the noise!

For the biopsy part he removed the original tool and made a small incision for the second. Funny, my husband said he didn't remember the two different tools, but they've been on the tray every time. So the doctor explained to his students how to apply the right pressure and twist and, even more interesting, how to tell if he'd gotten a good sample. (it's a three layered sample).

After he withdrew the plug, he announced it was a good sample and the students, my husband and i all breathed a sigh of relief.

Afterwards Morey and i when to Fentons Creamery for old fashioned ice cream. When we got home i went right to sleep til i got up for dinner.
Now we wait - two weeks til the results are back.

My Bone Marrow Biopsy this week

My Bone Marrow Biopsy is coming up this Wednesday. this always hurts me alot. It's way beyond what anyone can reasonably call "discomfort"!!!! I think that some people do not have such a bad experience as i do but i can't imagine why! I mean they have to cut through your bone to get to the marrow and there is no way of numbing the bone. So what i do is take something to calm me down so i can relax. things always hurt less if i'm relaxed! kayla garelick daydreaming arts kaylagarelick@mac.com http://daydreamingarts.blogspot.com/

questions and answers

Kayla-thanks for keeping me informed. But what is confusing to me is whether it is very unusual for a patient to have a pre-leukemic condition after already having had a diagnosed case of leukemia and treatment of that illness.

my MDS is secondary to the chemo i had for AML. it's more likely to turn into AML than primary MDs, but less likely than MDS that's been treated w/ BMT but wasn't put in remission. the only difference for me between AML and MDS is that untreated AML kills you very fast where as untreated MDS can take several years.

Do you have a plan in place if (and  when) a BMT transplant is indicated? 
no. I see my doctor next week to find out some more details that help plan the course of treatment. He will know things like whether and how many blasts (immature blood cells) i have in my blood stream. the more the merrier - or rather the higher the risk of progressing. (sorry i know not everyone likes it when i fool around but it keeps my head above water).
Then we will still need to redo the Bone Marrow Biopsy in order to redo some DNA testing to complete the picture of my risk level. when we know my risk level we can make these important decisions that this article talks about.

My most important question:how are you feeling?  Exhausted? In pain or discomfort? Scared? 
yes!
thank you for asking. I'm so easily tired which i don't understand cuz i'm not very anemic,
i have some pain in my bones now which could be my tendentious or it could be the dreaded bone pain of unhappy bone marrow (i think this happens when the marrow gets crowded with immature blood cells) and i'm in alot of hip pain which i believe is totally unrelated but just osteoarthritis.
of course i'm scared cuz i hate unknowns and there are plenty with MDS!!!! I have trouble sleeping cuz of the anxiety, natch! 

I am so sad that it is a hard time for you. I wish you guys could just enjoy life. 
I enjoy life plenty!! (except when i'm having trouble falling asleep as mentioned) I think Morey has more trouble having a good time with so much the matter so i try to make sure he goes out to do fun stuff like jams, and gigs with his music.

family support

Last week when I sent out news to my family i received a wonderful response from a half sister i've never even met. I won't mention her name without her permission but the love she sent me is so warm - like the sun on my face!
she offered her bone marrow!
she's willing to be tested to see if we are a match and if needed to donate her cells. She made this offer without knowing how much easier these acts of kindness have become. I'm pretty sure that these days the test is a blood test not a Bone Marrow Biopsy.
We did this with my brother. It was done at Stanford because they want to do it under optimal conditions. This was a while ago when i had AML and no one seems to know the results.
The procedure itself is no where near as bad as a bone marrow biopsy. They "harvest" blood from a peripheral vein. just like giving blood. only they also give some back! i think there are two IVs or something. so it would not be so hard on my brother Adam's body. then to give it to me it's just like a blood transfusion.
i asked my oncologist, Dr Breeden, about the HAL (HLA?) test for a bone marrow match in my family. he said that when i go see the folks at Stanford, who would do the transplant, that i should ask them and they will decide if it's worth investigating. This would not be until after I see Breeden in October. I don't know how long the waiting list is to see them.
Breeden said my half sister, my mom, and my kids are at best a 50% match - which isn't very helpful. it seems weird to me - isn't there a better chance that a family donor would match than someone in the bone marrow registry???

check for info on partial family matches coming soon to the main article section.

there is still a chance that my brother Adam is a match, but my husband is pretty sure he remembers being told he was not a match when we tested years ago when i was receiving treatment for AML.

visiting the doctor

Last Week Morey and I met with my oncologist, Dr, Breeden, about my MDS and here are some of the things we discussed:

1) it's not 100% that i have MDS. it could be something else but it's not likely given my circumstances. he wants to see DNA results to confirm it.

2) The something else could be something good like an autoimmune thing going on, or something bad like the AML (leukemia) coming back. one test that indicates poorly behaving bone marrow is the percent of blasts in my bone marrow. the lab did a count and Breeden did a count. lab found 2%, Breeden found 9%. these numbers indicate trouble but not AML (which is 20% - 30%). these results are consistent with MDS and not an auto immune disorder.

3) to confirm the MDS diagnosis we are redoing the Bone Marrow Biopsy Sept 19th. the DNA testing that did not come out last time will take 2 weeks from the 19th to come back.

4) We will meet with Breeden around Oct 3rd. if the results indicated MDS he will refer us to Stanford Medical Center in Palo Alto where we will consult re the appropriateness of a Bone Marrow Transplant. Here is a funny juggling act with MDS and the decision concerning when and if to go for a BMT: if Stanford thinks i'm not sick enough or likely to progress to AML they may say i don't qualify for a BMT. but if i'm too sick in other ways or i'm too old they may say i don't qualify for a BMT. I could be not yet ready for a BMT and then become too old for a BMT (55 is the usual cut off & I'm 53).

We could try to outsmart the MDS only to have it progress to AML. If it does that it's a much more resistant BMT than i had before. My hope is that if i need a transplant it will be next year. Frankly if i have MDS, because it's secondary to AML treatment it's considered more likely to progress to AML, so i much rather have the transplant while healthy and before 55 years old when they are very unlikely to approve it. ideally fall of 08.

5) after the Bone Marrow Biopsy we may try to see if a round of prednisone will improve my blood levels on the theory that it's an autoimmune response. besides the prednisone, Breeden sees most medications for MDS as ineffective and dangerous for me. (they may well help others, just not me.) these medications tend to ward off AML but lower blood counts more in the process. He is even hesitant to give me Neupogin for my low white blood cells until if gotten an infection or two in order to justify the need to raise my counts!

I've thought about this alot this week and it seems really ridiculous to risk getting an infection now. I need to spend this time getting as healthy as possible so that i will be in top form for a BMT. I started walking again. If i walk on the beach then my hip hardly hurts.

6) Stanford is one of a few places deemed Centers of Excellence for MDS so i'm confident that should the procedure be necessary i will get excellent care there.

check out their website: http://hematology.stanford.edu/patient_care/mds_center.html

Stanford's cancer care hospital is way up there! http://cancer.stanfordhospital.com/forPatients/default and their

BMT clinic top notch: http://bmt.stanford.edu/patient_care/facilities.html

my next appointment: the anxiety starts

OK I'm seeing dr. Breeden on aug, 28th. I will get to hear his thinking on this disease. I'm worried (what else is there for now?). In one scenario he says i'm not really all that sick so i won't qualify for a bone marrow transplant. In the other he says i'm already too old for a bone marrow transplant. In either case i imagine not being able to work toward remission (sometimes called a cure when folks speak of MDS but if it's a form of leukemia then we know there is no such word!). Then i imagine myself trying to talk him into it, and getting tangled up in my idea which is that the transplant will take place after my daughter goes off to college next year so she is not further traumatized by my illnesses. Then i envision not being able to impress on Breeden, or anyone one else, how it's so important to get a BMT but i nonetheless want to wait until next year. My most frightening fantasy though is where Breeden says not only do i qualify for a BMT but that we should do one ASAP. this usually comes to my head while i'm falling asleep. There is no logic to it cuz Breeden can't draw any conclusions and recommend a BMT till the tests are complete.

test results: it's not AML

Well it's been a tough couple of weeks. waiting for the test results was hard. the news is mixed: I'm grateful because my AML has not come back. But i have MDS (myelodysplastic syndrome) or Myelodysplasia. be sure to read my research that explains this disease. it's clearly the case with me so far that it's moving slowly. I have vague plan to get in shape again and be ready for a BMT in the next couple of years. ... and then i panic that i don't have a couple of years. So how bad is my MDS? well we don't know yet. Breeden, my Oncologist, has studied the results from the bone marrow and sees enough to make the diagnosis but is still missing info on the chromosomal abnormalities. apparently the cells from my biopsy were not eager to show off their dividing capabilities in the lab so he doesn't have lab results for all aspects of the disease yet. He says because the disease unfolds slowly we won't redo the bone marrow biopsy til late august or sept. I guess that's not to clear. well check back for more news and updates kayla garelick daydreaming arts kaylagarelick@mac.com http://daydreamingarts.blogspot.com/

about kayla's MDS and stem cell transplant

This part of my blog tells my personal story with my battle with cancer - two different times! First in 2002 i was diagnosis with acute leukemia. I was given aggressive chemo therapy and was put into remission (the best you can expect). then, in 2007, after never fully recovering from the chemo, i because very sick again. Months of tests finally lead to the diagnosis of treatment related MDS, a rare for of blood cancer similar to leukemia. the more tests they did the worse it got. the doctors stopped telling me the median survival rate after i'd reached 1.8 years, and yet more bad test results came in. 

There was no way to slow it down or stop it without a stem cell transplant for my bone marrow. no one in my family was a match so an international search was started. two months later i was blessed with two matches!

In Feburary i had my transplant after a unquie preparation which was less difficult to withstand than more chemotherapy. I'm now some seven months out from the transplant, still on may restriction, still recovering but grateful to have more strentgh, fewer restrictions, and excellent test results! the other pages include research i did about MDS, another about transplants, and the first page which is a wandering monolougue about making art, making meaning etc.

One Week Delay

OMG! i just heard from Page at Stanford. they are moving everything back (forward?) a week!

so the two appointments i had this week are for the week after and my admit date will be the 17th instead of the 10th, transplant the 29th!
 
i have tons to do now to move everything one week!

12 potential donors

I heard from Paiger at Stanford today and she told me:
"Hi Kayla,
We have 12 potential donors for you.  We are working on contacting 6 of them and getting another sample of blood from them sent to our lab to see if they are a match.  I hope to know more in a few weeks.
Thanks,
Paige"

so what i think that means is that so far they have found 12 potential donors who's HLA matches in a low resolution way. So Stanford has sent them a kit that the donor takes to their lab and blood is drawn, filling several special tubes. The kit is then sent overnight to Standford who analizes it in detail to find the best high resolution match. That HLA typing is likely to take as long as mine did, which i think was 3 weeks to a month. plus the donor can only get the draw on a day when the Stanford lab will be open the next day so fridays and christmas eve are out. it's so exciing to have something moving forward!

Stanford Intro Appointment

News flash! The Introductory appointment at Stanford will be Friday Novemeber 2 at 1 pm. 

Bone Marrow Results: Details

Several different kinds of tests were done on my bone marrow. I will try to post explanations as i come to understand the results. in the meantime have fun researching this stuff! Keep in mind that each numbered section represents a different lab and different scientist having a go and my biopsy.
1) Flow Cytometry results showed: "CD34 Positive non Lymphoid Blasts, 4 %, see comment Comment: CD34 positive non lymphoid blasts account for approximately 4% of total events and 6% of non erythroid events. the phenotype is different from that of previously characterized leukemia (12/26/02 and 12/18/02). Overall findings may suggest at least MDS with or without excess blasts ... Sample viability (by dye exclusion) 98%. Gating strategy: CD45 vs side scatter. A population of CD34 positive non-lymphoid blasts accounts for approximately 4% of events and 6% os non erythroid events. Positive for: CD 19 (Dim), CD 34, CD13 (Dim, Partial), CD117, and HLA-DDR. Negative for: CD3, CD4 CD8, CD5 CD10, CD20, CD56, CD15, CD33, CD14, CD2, CD7, CD61, and CD64.
2) SP Final RPT:
Final Pathological Diagnosis
Bone Marrow Biopsy and Clot section: Mildly Hypocellular Bone Marrow with decreased granulopoiesis and reactive changes see comment
The reactive changes may be secondary to the previous therapy for acute leukemia. Megoblasic changes are not appreciated in the biopsy specimen.
Microscopic Description:
The Bone Marrow biopsy is an adequate specimen. The overall cellularity is 30%. Erythropoiesis is present in adequate amounts with maturation. Megaloblastic changes are not appreciated in the biopsy specimen. Granulopoiesis is present in decreased amounts with a paucity of mature neutrophils. Megakaryopoiesis appear slightly decreased. The megakaryocytes present appear normal morphologically. A lymphoid nodule consisting of small mature lymphocytes is present. Also scattered throughout the bone marrow are foamy macrophages and plasma cells with the plasma cells consisting of less than 5% of the total marrow population. The clot section is sparse, demonstrating only several small particles with increase erythopoiesis.
3) Studies:
Bone Marrow was aspirated with ease (HEY! MAYBE FOR YOU!) from the left posterior iliac crest. a portion of the specimen was sent for flow cytometry and for cytogenetics. A bone Marrow biopsy was performed as well. The aspirated material was sparse, with only one spicule that was adequate for interpretations. The specimen was insufficient for an adequate assessment of cellularity. Occasional Megakaryocytes were identified. Granulocytopoiesis was present with orderly maturation. Erythropoiesis Was present with megaloblastic maturation. the G:E ration appeared to be approximately 1:1. blasts were not visibly increased. The iron stains were uniterpretable because of an absence of definite bone marrow elements.
Impressions: Sparse bone Marrow Aspirate with Megaloblasitic Erythropoiesis.
4) Cytogenetics:
Number of Cells/colonies: 20. Blasts 400
karyotype: 46, XX+1, der (1;7) (q10; p10) [4] / 46, XX [16]
Three cells showed an abnormal female kariotype with an unbalanced whole arm translocation between 1q and 7p resulting in trisomy for 1q and monosomy for 7q. Sixteen cells showed normal female karyotype.
the t(1;7) translocation is considered a variant of 7q deletion mostly found in myelodysplastic syndromes (MDS) cases, some with acute mylegenous leukemia (AML) (subtype M4 or M1). Like monosomy 7 and 7q deletion, the t(1;7) translocation is frequently found in secondary MDS and AML. Less frequently, this translocation has also been detected in chronic myeloproliferative disorders, in particular polycythemia vera (PV) and myelofibrosis. When found in MDS and AML the translocation is associated with a poor prognosis. Clinical correlation is indicated.