Carol's AML Pages:  Best of "Spam"
Volume #2

Overview
Not really spam, but a collection of e-mails I sent enmasse to family & friends, gives a sense of life in the hospital   I created three sets of e-mail lists, one for family, another for friends and the third for work colleagues.  In reality, I've wound up sending the e-mails to all three groups.  Here's the entire set, which I realized as I was putting this together give an excellent overview of life in the hospital, going through chemo, infections, and coping with the illness overall.  I also find it oddly comforting to be able to read the story in total.  The e-mails have been slightly edited -- I removed phone numbers and names of hospitals and staff, but that's about it.  And added a few links when I mentioned a non-profit or something that links to an easy topic to find.

     To put the dates in perspective:
       6/10/03:  I was diagnosed and admitted to the hospital on 6/10/03 and started induction chemotherapy that night.
       7/10/03:  Discharged from hospital (31 days)
       7/28 -8/2/03:  Consolidation chemotherapy #1 (6 days in hospital, Monday thru Saturday a.m.)
       8/9/03:   Hospitalization due to unidentified infection (5 days)
       8/25 - 9/01/03:  Consolidation round #2 (6 days in hospital)
       9/4 - 9/15/03:  Hospitalization due to sepsis (11 days)
       10/27  11/1/03:  Consolidation round #3 (6 days in hospital)
       11/5 - 11/17/03:  Hospitalization due to sepsis (12 days)

for a grand total of ... 77 days!  Basically, half of the five months from 6/10 until 11/17 in the hospital, which doesn't include the days spent on house arrest due to low counts, trips to the clinic for site care or lab tests, trips to the clinic for IV antibiotics. 

4/6/04 Update:  I relapsed March 12, 2004, so here's a new set of e-mails & dates:

    3/12/04  Relapse discovered at monthly visit to oncologist
    3/13/04 -  Induction chemotherapy, new Hickman catheter, another round of E Coli sepsis, fungus in lung, etc
    4/16/04  Discharged from hospital (35 days)
    5/3/04 - 5/10/04  Work Up 'Week' prior to cord blood transplant (outpatient)
    5/11/04  Admitted to Fairview-University Medical Center -- Day -7

Vacation's Over, Back at Methodist  (3/14/04)

Dear loved ones and colleagues,

    I was hoping this overdue update would be a recitation of the fun things we've been doing these last two months, like learning to throw pots and a vacation to Oregon, but my monthly checkup on Thursday showed that the leukemia has returned ("relapsed").  I checked into Methodist Friday, had an echocardiogram to check my heart, a new Hickman catheter installed, and began induction chemotherapy again.

    I felt fine, great even, when we went to the doctor, but had this sixth sense that it may be time to start fighting again.  My reds and platelets were normal, but the WBC was rising -- 30,000 Thursday, 36k when I checked in Friday.  The chemo is starting to turn things around -- the WBC is down to 29k after only 1 dose of the idarubacin and 1 1/2 of the AraC.  Since I was in much, MUCH better shape this time (compared to last June) I fell pretty OK -- the antinausea medication is doing its job, and I mostly feel tired, a little green, and fuzzy-headed.

    Dr. D will be talking to the transplant people at the University of Minnesota tomorrow.  At this point I'm not sure if I'll have a peripheral stem cell transplant from an unrelated donor (a "PBSCT from a MUD") or a cord blood transplant, using stem cells from an umbilical cord.  The latter is pretty new, so I want to hear the pro's and con's of each.  The challenge now will be getting me and keeping me in remission until I can have the transplant, then surviving the transplant.  If that all works, transplants have been known to add years to AML patient's lives.

    I'll try to put together a list of things people can do to help.  In the short run, cards, personal e-mails, visits, and calls are very appreciated.  Carl and my brother Joe come over every day, so if one other person/couple could come each day, say in the afternoon that would be terrific.  It helps to see friendly faces from the real world.  I'll probably be here at Methodist for a month, then home for ?? weeks, then at the U of M for probably at least a month and on disability for probably a year (they recommend you apply for SSI immediately, bleck) so you have lots of opportunities to generate good kharma!

    I'm running out of steam, but will try to send more tomorrow or Tuesday.

Love,
Carol
Counts Going Down (3/18/04)

Hi, all

    Just a short note since I'm low on gas.  The one-two punch of three days of idarubicin along with seven days straight of Ara-C (today starts my last baggie at noon, whoo-hoo!) is having the desired effect.  I started at a high of 36,000 WBC last Thursdayish and am down to a very respectable 500, plus my reds are holding their own (Hgb 11.0) as are the platelets (29).  I feel pretty out-of-it and achy but despite that have been up to take a shower and made two full laps down the hall this morning.  The Hickman quit bleeding (that was exciting) and after they checked it under Xray pronounced it sound and in the right spot, so the tightened it into place with another stich and some industritrial strength collagen tape. 

    Short visits and calls, cards with outdoor scenes or Far-Side esque humor are great.  By next week I'll have a better appetitie and should be backing off the antinausea medications.  Next Thursday-ish I'll have a bone marrow biopsy where we'll pray the little confused beasties have long since backed their bags and left home for good. 

    I finally decided that this time around I would remain a whole person.  I wound up feeling like my right upper quadrant wasnt' really mine, it belonged to all the medical personal who scrubbed and poked and ooo'd every time the Hickman produced a smart return of blood.  No, it's still my shoulder, and the cancer cells are still my cells.  They're just confused teenagers, to quote one of my doc's, and need a firm hand to grow up and leave home.  Hmm, time to do a body scan, Cindy G, it helps to keep me from going totally ape, or if nothing else, it's a good entree to a nap.

More Later when the chemo brain slacks off.
Love to you all, you guys are really, truly what are keeping me from going bananas in this place

Carol
Shore Leave (3/20/04)

Hi, everyone

    Dr. C said I could actually go out today on day pass (i.e. they let you escape for 4 hours), so Carl and I hung out at a Dunn's.  Sheer bliss to look out a large, sunny window without BARS!  I knew I'd be in at Methodist until the counts recover (9.8, 0.3, 12) given my affinity for gram negative rods (I think I have the beastie right, the one that keeps giving me sepsis), but I was surprised that I could go out on pass.  Then we wandered through Linden Hills Coop for a color fix and to pick up bland crackers and hoisin sauce. 

    If you're thinking of coming over, why don't you call first in case A) my gut is upset (as it was a chunk of today) or B) my gut is happy and we could run away for a few hours somewhere.

That's all for tonight -- the brain's pretty fuzzy.

Love,
Carol
Gram Negative Rods 0, Carol & Zosyn 1 (3/23/04)

Hi, all

    Just a medical update today since I'm pooped.  HA!  Can I call 'em or what.  While in the midst of getting refueled with red cells yesterday I talked D out of giving me any more tylenol since my temp had started to creep up.  For some weird reason they like to give you tyelenol in case you react to the blood and get a fever, but I also know that when my WBC's have been in the cellar for a few days I'm likely to sprout gram negative rods in my blood.

    Presto!  Within the next hour I was a feverish, shivering wreck.  Had I taken the tylenol it might have masked the fever longer, which is what happened the first time I had sepsis.  Hat's off to D, my nurse, who kicked bunnies and got the doctor called, the lab contacted, pulled the blood samples, and even talked to D the Pharmacist (yes that D, Cindy G), so within like half an hour or so I was bundled under warm blankets with Zosyn (anti-biotic) running and, appropriately, some tylenol to deal with the fever.  Carl was a dear trooper, as was my brother Joe, in distracting me, & Carl stayed overnight in case I started cycling again.

    And I was right -- all four blood samples had my favorite gram negative rods (a bacteria that normally lives in your gut but when my WBC's are down they swim into the blood).  I feel MUCH BETTER! today, just tired and dopey.  And, TG!, the fever didn't toast my cells too badly -- 0.4 - 10.1 - 16.

Love you all bunches,
Carol
Back in Remission/Bar Update (3/26/04)

Hi, all!

    Woo-hoo!  The bone marrow biopsy went well yesterday, and the doc says the pathology report shows no sign of the cancer (a clean marrow), so I'm back in remission.  Which also means no more chemo for now, untill I go in for the bone marrow transplant in probably the next 8 weeks or so. 

    Yesterday was ridiculously busy.  First I had the biopsy at 10:30.  I had explicitly requested the stand-up comic, Dr. M, who had very nice things to say about the U of M's BMT unit (U of M is where he did his residency).  When you have a chatty, personable doctor skewering a hunk of bone from your hip it makes the process MUCH more tolerable, along with Carl's hand to smash and my sister saying BREATHE! every so often.  The upshot is of the 3 BMB this one hurt the least, and unless I start walking too fast I don't even notice it today.

    Then time for a big baggy of platelets.  The nurse was so impressed at the lovely golden color of this bag, so we figured they must be extra special cells.  Ha!  I jumped from 10,000 to 58,000, a huge increase, so maybe she was right.  I haven't this many of the sticky guys for 10 days or more.

    Then off for a CAT scan of the lung.  Since my fever has not totally gone away (it's been hanging between 100.5 - 101.8, more than enough to make me feel like a wet washcloth until I get enough tylenol on board), I nagged the doctor to check for the mushroom in my lung.  The what?  He looked baffled (Oops, too much Carol-speak.)  The _fungus_ in my lung.  Oh, that.  So far they did a chest x-ray which showed nothing, they can't hear anything, so they did a CAT scan with dye contrast yesterday, and I betcha it shows that some of the old sites are waking up, just enough to cause the fever to not go away.

    As for the blood infection, it is indeed E Coli sepsis, so I'm now 3 for 3 on the last 3 major fevers with getting sepsis with the same bacteria swimming over from my gut.  They pulled out the big anti-biotic gun yesterday, Vancomycin, to use along with another wide-spectrum on, Zosyn, so they're doing their job acting as my immune system for the minute.

TRANSPLANT:
    As I know more, I'll certainly let you guys know.  Since I'm in remission, that was one major hurdle towards moving toward a transplant -- you have to have the cancer beaten back first before they'll attempt it usually.  The overall process is very grueling, starting with a conditioning process to kill off all your own bone marrow, which includes (usually) full-body radiation and more chemotherapy.  That takes about a week, I'm pretty sure in the hospital.  Then on day 0 they hang a baggy full of stem cells and run it into your veins and magically the little guys find their new homes inside your bones.  Then you wait.  And wait.  To make sure they like their new home A) well enough to stay and multiply (engraftment), B) recognize any leftover leukemia as bad guys (Graft-vs-Leukemia), and C) don't decide that their new home is the enemy and attack it (Graft-vs-Host Disease).  So it's a juggling act with anti-rejection drugs, along with the usual wardrobe of antibiotics until your immune system develops well enough to fight all the other invaders.

    Consequently, I'll be cooped up in the BMT unit at Fairvew-University for at least a month, AND, UCK!!! most of that time I will NOT be able to leave my room.  I will definitely be looking for frequent visitors when I go in for the transplant, assuming I'm not too sick, because being locked up a month in one room will be enough to drive me bananas.

BARS ON WINDOWS
    Just in case I've confused a bunch of people, there really aren't BARS per se on my windows.  There are these dopey mini-blinds embedded between two window panes and you can flip them up or down but you can't get the whole rig out the way, so it looks like bars to me, plus they leave shadows of bars on my little table here where I write.

Enough for now,

Love,
Carol
No new news, just waiting for counts (3/29/04)

Hi, all

    Nothing exciting to report per se.  The temperature has been down for a few days now.  I can't remember what all was in the last few e-mails (blame the chemo) so here's the highlights:

    +    Biopsy showed the AML is in remission
    +    CAT scan showed a few new small nodes (fungus probably) so back on an anti-fungal medicine
    +    Have been out on day passes the last several days for 1-2 hour outtings

    Carl bought a nifty answering machine, so it can catch my calls if I'm out walking, napping, etc.  I tied up the phone line tonight for a good hour+ sending a big file a client needed plus working on taxes with Carl, so if you tried to call that's why you couldn't get through.

That's it for tonight,
Love,
Carol
Countdown to transplant (3/30/04)

Hi, everyone,

    I just spoke with KF at the U of M (I think she's the transplant coordinator) and was able to get a bunch of questions answered.  Here's the highlights:

    +  They have cord blood cells (one unit) ready and waiting for me.  It's a 5/6 match, meaning of the 6 categories they match stem cells on, this matches 5 of the 6, which she said is very good.  Most cord blood she said matches on 4 of 6.  The unit has plenty of cells for me at my size.  They are also checking out another unit (international even) as a back up.

    +  Cord blood engrafts (takes up residence in your bones) as well & as quickly as peripheral blood stem cells (PBSCT) according to the U's latest findings ("doesn't compromise engraftment" were her words; other journal articles I'd read said cord blood takes longer but that may not necessarily be so).

    +  Cord blood has the same or less graft vs host disease (GVHD) compared to PBSCT, and has enough graft vs leukemia

    +  The best news it's available NOW, with a very good match, as opposed to having to wait weeks for a PBSCT or worse, never finding a donor that matches well enough

    +  Timing may go something like this -- they want me to have 1500 WBC, with 1000 being neutraphils (the big infection fighters), so if my counts pop up in the next 1-2 weeks I may start the process April 12 or perhaps a week later.  I'll need to go through a week's worth of assorted tests, like another bone marrow biopsy, heart tests, etc, then would be admitted to Fairview-University Hospital the week after that.  I'll be in the hospital about 5 weeks +/- she said.  Then the long, slow recovery (like a year).

    Carl and I are meeting again with Dr. D K, MD, PhD Thursday, April 8 to discuss the specifics of timing and to pummel him with all my nitty questions that I haven't gotten answered yet.  (His web page is at www.dom.umn.edu/divisions/hot/faculty/kaufman/ ).  The U of M had done the most umbillical cord stem cell transplants in adults in the world (300+ to date).  To read more, check out http://www.fairviewbmt.org/ucb.asp  .

Love,
Carol
Counts Up, Iritis, Hairdo (4/1/04)

Hi, all

    Well, I'm back to looking like a dark peach; my sister-in-law Nancy gave me another buzz cut yesterday.  Oddly, I'm not quite as bald this time, but have no fear, the stuff the U of M will feed me will likely do in the rest.  I put on my lovely blue face mask yesterday and trotted down to the cancer clinic in Meadowbrook and swiped a minty green (?) cotton knit hat to cover my cold gnoggin.  Some dear souls make hats and leave them in the waiting room for anyone to take.

    And today's good news is my WBC is up to .800, the reds hardly dropped (9.6) as did the platelets (9,000) so I do believe they marrow is finally waking up.  I get a baggy of platelets today and am going to see if I get another dose of "Colorado Gold" -- the nurse was so impressed with the color of the last batch which gave me a huge boost.  If present trends continue, who knows, I might be out by Monday.  I still have to get weaned off all the anti-biotics and suspect I'll continue the Cancidas (anti-mushroom) at home.  But geez, I would like to have a few days between Chez Beige and the U.

    My right started to hurt Tuesday, so I asked to see an opthamologist yesterday.  Dr. W___ (name?) brought a portable kit of inspection gear but couldn't see anything wrong with the eye, but then I typically don't show signs of iritis until it's been cooking for a week or so.  He gave me a prescription for the cortisone drops (PredForte) and the dilator drops if I need them. It feels better today so the drops are doing the trick.  This is weird, I've had this 3 times now around spring break, but Dr W says it tends to show up spring and fall (and my other time was in October).  (Iritis is an inflammation of the iris -- the first time I had it I spent several weeks going around like a Precious Moments Dracula, one eye dilated way out and wearing multiple pairs of sunglasses because light made the eye really hurt.)

    Say -- if you're on this spam list and would like to get off, just drop me a note.  Or if I've missed someone, have them drop me a line or give me a call.  I know people have given me their addresses in the past but I'm not exactly running on all cylinders lately so may have lost some along the way.

Love,
Carol
Update from Chez Beige (4/3/04)

Hi, everybody,

    I treated myself to lavendar lipstick and matching nailpolish, plus bronze eyeshadow (the tubey kind).  Hey, at a buck a piece at the little store in Meadowbrook (the connected clinic building) I figured why not?  Besides, my gnoggin is getting shinier by the day as the little prickly hairs slide off, and will make a great Easter Egg, just smear a little purple lipstick around on top and I'll be ready to hide somewhere. 

    Counts are creeping up & down -- WBC are .9, HgB is down to 8.8 so I'm pooped, and platelets are down to 13, so I'll probably get transfusions again tomorrow.  I told Dr. S yesterday that I didn't like the answer I got from dad (Dr. P), so I'd ask mom -- how many wBC's did I need to get out of here.  And darn if she didn't say the same thing -- I need 1,000 neutraphils to be released.  The breakfast bunch at Trotter's sang the Neutraphil Chant over Carl's cell phone this morning.  Supposedly they were also dancing on the tables and stopping traffic with their attire, but we don't have a video phone so I can't vouch for how wild they were.  We'll see if the Chant works!

    Wow, I even got a spontaneous hug from Dr. P yesterday as he was wishing me well with the transplant, really choked me up.  The doc's and the nurses are so nice here, I really really hope the guys at the U of M are as sweet.  Supposedly I can request which nurses I want on my care team, which would be great. 

    TRANSPLANT:  Assuming the counts hit the magic 1000, I start testing and informational meetings Monday April 12 at the U of M, which will run Monday thru Friday, six hours a day.  Ugh!  I imagine most of the time is hurry-up-and-wait.  A social worker will be available to answer questions, so I'll have my list of questions handy, like who can visit when or not. 

Pg's here to do vitals, so will sign off for today.

Love,
Carol
Excitement Pushed Back One Week (4/5/04)

Hi, all

    My counts are hanging stable, so Dr. D called the U of M/Fairview and said to push things back a week, so we didn't meet with Dr. K, the transplant guy, tody.  CAUTION!  Ask about my counts at your own risk -- after 4 weeks at Chez Beige you're likely to get a snarly QUIT ASKING ME!  I DON'T KNOW WHEN THE LITTLE @#$%'S ARE GOING UP, etc.  My eyeball is doing better (the iritis is clearing up), nothing hurts, and my energy level was much, much better today.

    Carl and I ran away to Linden Hill's Dunn Brother's today and actually sat outside for probably an hour, soaking up the sun.  Bliss!  Even took my hat off to catch the breeze.  And yet another refill at the coop deli, plus found some organic cotton undershirts, woo-hoo!  Try shopping for undershirts and pajama's via the Internet, it's rather pokey, so was happy to find my favorite brand next to the dish soap. 

    I'll probably be here over Easter, so am armed with an Easter egg kit (for the stickers) and more eyeshadow and lipstick to decorate my head (have to get a laugh out the nurses somehow).  Yesterday I told Dr. D to check out the egg on my head and Carl said he looked really worried.  I took my scarf off and he couldn't see anything, "Oh, the make-up must have rubbed off."  Duh, never dawned on me that my concerned doc would think that I had bumped my head. 

    My mental energy is pretty low -- I know you guys like getting postings but some days the brain just isn't cooperative.  THANK YOU EVERYONE!!! for the cards, calls, visits, care packages, and kind thoughts and prayers -- they help get me through the toughest part of this ordeal which is mostly being cooped up and away from y'all. 

Love and hugs,
Carol
Egg Head Attached (4/12/04)

    Hi, everyone,

    Still twiddling my thumbs at Chez Beige.  The doc's have started me on a booster shot, Neupogen, that should help make the WBC's grow faster, and they're trying their best.  I'm up to 1,100 now but that's still only 200 (18%) of the neutraphils and I need 1,000 to bust out of this joint.  But I'm not complaining, given that some of my neighbors at 4 South have been here for months.  The eye is about the same (twitchy, doesn't hurt), and I'm a pretty boring patient now that I'm down to just the anti-fungal IV once a day and a antibiotic pill once a day (Levaquin).

    Attached for your entertainment is the famous Easter Egg as created by my sister Barb on Saturday.  I also doodled on my head Sunday but her artwork turned out much better.  I need to keep a better eye on the bunnies in my room as they seem to be reproducing, as are the birds.  At last count, I have 2 dogs, 2 .5 bunnies, an elephant, 3 birds, a bear and .5 duck (the transgenic duck/bunnie -- it has the bill of a duck but the legs of a bunnie).  Ah, spring!
Carol's Easter Egg
    The appointment at the U of M has now been pushed back another week, to April 21st with a different doctor whose name escapes me.  The extra time gives me more time to rebuild my strength as well as get the counts up.  Today Nancy (sis in law) and I hung out at Dunn's on the sidewalk, then walked around the block, and Carl and I went out for Vietnamese for dinner, so have been getting out of the hospital at least once a day lately.

    Thanks SO MUCH!! for all the cards and treats and books and tapes and goodies, I'm beginning to feel rather spoiled.  I've updated my web page with the latest e-mails, and Carl is working on a guest book where people can leave messages (like the nurses hear have been asking to do when I go to the U of M).  The address is:  www.visi.com/~chaugan/carol/CA_AML_Pages.html

    Also, my phone number here is ---, and I've called the operator at the hospital twice to try to get the directory listing fixed (it says I'm in intensive care without a telephone, NOT!).

Love,
Carol
Home Soon?  (April 15, 2004)

Hi, gang,

    That Which Must Not Be Named ... has been cooperating.  I've gone from 200, to 240, to 576, to today I have 800 'phils out of a total of 2,200 whites, so there's a pretty good chance I can go home tomorrow, present trends continuing.  Today is refill day, as I need platelets and reds both, so will be spending a leisurely afternoon as the cells drip in.

    VISITING AT THE U OF M:  I talked to Tim the BMT Nurse at the University of Minnesota/Fairview who described a visiting policy that's basically the same as here on 4 South -- no more than 2 visitors in my room at a time, wash your hands before you come in, don't come if you have a bug or have been around someone who's sick.  I keep getting different advice from different nurses here, so I'm going to just stick with what the U says (other people have sounded much more stringent, like only two identified individuals can visit, period, for a few weeks). 

    When I get more info on parking, I'll pass that on as well, since the U is a big place and parking isn't cheap.

Lunch is here, so time to dive into the manicotti (which is actually pretty decent).

HEY!  Try out my new Guest Book:  http://www.visi.com/~chaugan/carol/CA_AML_Pages.html

    It's the second choice now on the menu.  (If you can't remember the address, just go to google:   www.google.com
and type in Carol AML   and I'm the first hit.

Love,
Carol
Going Home In Hour Or So (4/16/2004)

Hi, y'all,

    I am indeed heading home today as soon as the Cancidas (anti-mushroom) quits dripping and Carl and I finish getting packed up.  I will probably go into Trotter's tomorrow for breakfast, but if I hear too many sniffles may escape after a bit.  The doc says I don't need to be a hermit, but really shouldn't be hugging anybody as that's a good way to pick up a virus, so please don't be offended if I only offer you the Neutropenic Hug (even tho' I'm not, I have over 1000 'phils at the minute).

    So, I'll be spending the next week or so watching the flowers grow in my garden and reading.  Anybody who has an urge to pull leaves off of tulips is certainly welcome to give me a buzz and come do so, since I'm supposed to avoid dirt etc. 

    If I'm a little spastic this week, apologies in advance, it's part of the re-entry goofiness as I readjust to not have people wake me up at 4 in the morning.

Love,
Carol
Today's Trip to U of M  (4/21/2004)

Hi, everyone

    What a long couple of days.  Monday the home health care nurse came out to collect blood for a CBC (complete blood count) and change the band-aid on my Hickman.  The platelets (sticky guys) were down to 12,000, so I called the on-call doctor to ask about getting a CBC done Tuesday & he agreed.  So, Tues bright & early I get a CBC done at the clinic, and sure enough, they're down to 6,000 (for perspective, normal is 150,000 - 300,000).  Theoretically the hospital would have a baggy of cells ready by 11:00 (not bloody likely!) so went on to my eye doc appointment.  He says the iritis is gone and can taper off the eye drops.

    So, back to Methodist Hospital via Byerly's to get real food.  Deborah met me there and we visited until 2:00 when the platelets finally showed up.  Then I got my left hip skewered with another bone marrow biopsy (my oncologist figured so long as I was there I might as well get that test done).  The aspirate (liquid from inside the bones) didn't show any leukemia, but the definitive answer will come in a day or so after they can look at the actual marrow sample.

U OF M VISIT:

    Today Carl and I visited with Dr. Linda Burns at the University of Minnesota Hospital's BMT unit.  The U of M rotates doctors through the clinic frequently, but she'll be in clinic for the next week or so which helps with getting the same answer twice.  Having multiple doctors can be frustrating at times.  We reviewed my complete AML history and brought her up to date with my last hosptilization.  Very sharp lady, personable, and upbeat, so very happy with meeting with her.  Also met with Doris the social worker, who gave us educational info and another quick tour of the BMT unit (wow are the rooms small, but at least they're not beige).

    Highlights:

    1)  Remission:  First question is am I really in remission?  If the AML is back, then the transplant wouldn't be enough to kill it off.  It takes awhile for the marrow to recover, and if you don't have enough stem cells they can't tell what's going on.  So we have two issues -- do I have enough cells?  If  not, then we wait and redo the biopsy.  If there's enough cells and the AML isn't back, then .... step 2 (gack, can you tell I'm a programmer?).   My bone marrow is so slow to recover I'm not going to be too surprised if they can't tell what's going on.

    If the AML is back, then likely another round of chemo using different drugs.  I need to have a lumbar puncture test, where they suck out a little spinal fluid (she said it hurts much less than a biopsy) to make sure the AML isn't hiding out in my nervous system.  If it is, then more chemo direct to the spinal fluid.  Only 3 - 5% of AML patients have cancer cells in their spinal fluid, but we have to check anyway.

    2) Work Up Week:  Over work up week I'll be in clinic for 6 hours each day to meet with different specialists and do different tests, such as another echo cardiogram to check my heart, a lung function test (you blow into a tube to check your lung capacity), talk to a neurologist about controlling my seizures, talk to an infectious disease doctor about why I keep getting e coli sepsis, etc etc.  Part of this week is BMT School where they'll give Carl and me a notebook with a ton of more information in addition to info from the nurse (?) educator.  Later in that week we meet back with Dr. Burns to figure out what's next.

    3) Likely Transplant Type:  Because I've had multiple infections (the mushroom in my lung, the e coli) plus am close to being "old", which is 45, for a transplant.  Assuming I pass all the other medical tests, I will most likely have what's called a "non-myeloablative" or mini-transplant, where they use a less severe preparative regimen.  I'll get chemo and radiation, but not enough to totally destroy the bone marrow.  I'll still get drugs to suppress my immune system.  The idea is to have my immune system work for a few weeks or months to protect me from infections, but ultimately it will fade away and the donor cells will take over.  So for a while I'd have TWO sets of stem cells -- mine plus the donor's.  Because I've had so much chemo already, my WBC counts may end up crashing to zero anyway.  25% of people don't survive getting a transplant, and a major reason is infections.

    It's unlikely I qualify for a regular transplant, given my age and the infections -- they don't like doing the more rigorous preparation if you've had a fungal infection recently to even 6 months ago.  The "mini-transplant" is fairly new, like within the last 4 years, so it's still somewhat experimental and they don't know how well it works over they long run.    The problem might be that the reduced chemo/radiation dosage doesn't totally destroy the remaining cancer cells, but then the hope is the new immune system will be smart and kill them for me.  Combined with having a cord blood transplant, as opposed to getting cells from a person, it may take longer for the cells to engraft and grow to being my only immune system:   TRANSLATED:  I may be in the hospital several months as opposed to the average of 5 weeks.  The other wrinkle is 10% of the time the cord stem cells don't engraft, so she has a Plan B ready in that event (which we didn't discuss today).

That's plenty for now.  My brain was stuffed by the end of the visit at 2:30, plus another 45 minutes to get another two week's worth of Neuopogen from the pharmacy (yowza, this stuff is liquid gold).  I can only absorb so much at a time, which I'm sure is true of most of you guys.

    So for now, we can only take one step at a time, which is am I in remission?  We'll know more in a few days, after they look at the bone chip from my left hip.  If I can make a plea, please try to hold off on the "When is ___ happening?" questions.  Uncertainty is the only certainty, and the most uncertain is how long things will take, when will something happen, and whether this will even work.  As we have info, we'll share it with everyone via these e-mails. 

Love,
Carol
On To Step 2!  (April 23, 2004)

Hi, gang

    Got the good news from Dr. D yesterday -- I am indeed in remission and the sample had just enough cells (15%) to make the test valid (if it had had too few then we would have waited another week and redone the biopsy).  Tim, a nurse-coordinator from the BMT unit, called and I am scheduled to start Work-Up Week on Monday, May 3rd.  The extra week off is a blessing -- gives Carl and me time to hang out, enjoy the lovely spring weather.  Also gives me time to build up more strength, my counts to recover, and for the Cancidas to beat back the fungal lung infection.

    Carl, Muffin & I are off to see Syzygy (our sailboat) this afternoon and hang out in Lake City.  I want to add a few more birds to my "life list" (laundry list of all the birds I've seen ever) so we'll probably wander back through the Wisconsin side and stop in Alma, which has a fabulous lake where migrating water birds stop to rest.

Love to all,
Carol
Work Up Week Schedule (4/30/04)

Hi, gang

    Carl and Muffin and I have been enjoying a lovely couple of weeks hanging out.  We've now done two day trips, one on each side of Lake Pepin.  My energy is doing better and have been able to FINALLY! walk a mile the last two days.  And amazing of amazings, I have OVER 6,000! neutrophils!  Yowza, no wonder my sternum feels bruised, the marrow is really cranking out the white cells, compliments of the daily Neupogen injections I've been (yuck) giving myself.

WORK UP WEEK & TRANSPLANT SCHEDULE

    Pending good results on all the exams next week, I will be admitted to Fairview/U of M Hospital on Tuesday, May 11.  The actual transplant, which is an anti-climactic baggy of cells that they drip into the Hickman line like a blood transfusion, will occur somewhere around May 16 - 18.  I'll get the exact Day 0 date next week.

    Just for grins, here's what we're up to next week:

Monday, May 3rd:
    8:30 a.m.  Neurology Consult -- figure out how to adjust my seizure medication to prevent grand mals
    10:00 BMT Clinic for lab tests and to pick up a calendar for rest of the week
    11:00  VRE Screening -- Vancomycin-resistant enterococci, make sure I'm not carrying any of these bugs
    12:30 - 1:00+  Bone Marrow Biopsy and a Lumbar Puncture -- two for the price of one, get samples to make sure the AML is in remission
    2:30 - 4:00 BMT Orientation -- this should be fun, sitting for this long on a (hopefully) numb butt

Tuesday, May 4th:
    9:00 Doris the Social Worker:  Actually, we're getting this appointment rescheduled so Carl can come, but we'll take in more detail about my support network, who's my caregiver(s), and my health care directive/power of attorney (i.e. if I can't tell the doc what to do when something goes really wrong, have in writing & make sure Carl, Barb (sis) & Joe (brother) know what I want).
    10:30  EKG and Chest X-ray
    1:00  Caregiver Class -- what's expected of the caregiver
    1:30 - 2:30  Caregiver support group (Carl will probably attend the next week since he has to teach a class at St. Thomas)

Wednesday, May 5th
    8:00 a.m. Line Consult -- have someone look at my Hickman catheter & make sure they like it
    9:30 a.m.  MUGA, an echo cardigram with dye injected (thru the Hickman) to make sure my heart is strong enough
    11:00  CAT scan of my lungs (make sure the fungus is gone; if it's not, then the BMT is probably on hold)
    1:00 p.m.  Nurse Coordinator Meeting -- meet with Kacy to review what treatment will be like.  She'll also be our contact person after I'm discharged.  (I called and asked her a bunch of questions today; she was very knowledgable, customer-service oriented and very pleasant.  Her job next week is to make sure I make it to all my appointments on time and if anything pops up that Dr. Burns, my BMT doc, needs to know, she'll take that info to her directly.  I'm tickled, she (Kacy the Nurse) has already e-mailed me back about one question).
    2:00  Consult & Simulation w/Radiation Therapy: 

Thursday, May 6th
    10:30  Gynecology -- figure out what meds to take to stop/control periods (so I don't bleed too much when the platelets really drop again)
    2:30 Dr. Linda Burns -- meet with the BMT doc again to review all the results & get the go/no go.  She'll be "my" doctor when I'm discharged.
   
Monday, May 10th
    8:30 a.m.  Infection Disease Consult -- figure out why I keep getting E Coli infections, how's the fungus in the lung doing

That's 18 appointments, if you've been counting.  Glad I didn't have to set them up.  Really glad Nurse Kacy will be keeping tabs on me so I don't spend all my time twiddling my thumbs in the waiting room and getting behind schedule.

Love & hugs,
Carol
Busy Work-Up Week/Addresses (5/5/05)

Hi, everyone!

    Just a two-second note because my sister Barb will be here soon to pick me up.  I'm about half-way through all the tests and meetings.  Today they check out my Hickman catheter to make sure it's up to snuff, then off for a MUGA (an echocardiogram of the heart with a special dye), then a CAT scan of my lungs (hopefully the fungus is TOAST!).  1:00 we -- me, Carl, Barb my sis and Joe my bro, meet with Kacy my nurse coordinator to learn exactly what prepartory treatment I'll be getting.  That's code name for the chemo and radiation.  Then at 2:00 - 4:00 Carl and I meet with the radiologist to find out exactly what goes on with the radiation, then they do a test run to figure out how much radiation to give me and where (but without the radiation turned on, obviously).

    I'll let everyone know what my address is at the hospital when I know definitely when I'll be admitted.  There's still a chance the transplant could be postponed due to health issues.

    In the meantime, our home address is:  2031 Goodrich Avenue, St. Paul, MN  55105

Love to you all.  Barb is here so need to run!

Carol

Transplant's A Go - Admit Next Tuesday (5/6/04)

Hi, everyone

    Carl, Joe, Barb and I met with Dr. Burns this afternoon, who says all my tests turned out fine.  I am scheduled to be admitted to Fairview/U of M Hospitals next Tuesday morning.  I'll be sending information in the next few days on how to navigate around the U of M, where to find parking, and the like.  I'll send my exact address and phone number next Tuesday. 

    Tomorrow at 8 a.m. (bleh) I have a brain MRI.  The neurologist is determined to figure out why I have seizures.  He also wanted me to have a sleep-deprived EEG (as in go for an entire night without sleep before the test), but I talked Dr. Burns out of it.  I don't think he's going to learn anything interesting.  I have my one $3.50 valium to take before they slide me into the tube (not fun for the claustrophobic amongst us).  That's the only medical activity tomorrow.  Monday 8:30 we talk to the infectious disease doc then later in the day finally meet with the radiation therapy people to talk through the process.

    Next Tuesday, Check In Day, I move in, meet the staff, then get to go out on pass until the evening, when I need to come back and get hooked up to IV fluids, plus start a medicine to help my body take care of byproducts released by any dying cells (allopurinol).  That's Day -7.  I'll be getting six days of chemo, plus one dose of whole body radiation on Day -1 (Monday, 5/10).  Day 0, Transplant Day, is Tuesday, May 11th.  The hospital chaplain will even stop by to bless the cells!  I may end up sleeping thru the festivities because they give you benedryl to prevent reactions to the preservatives used in the cord blood.

Enough for tonight.  Love to you all, and would the Garden Cleaning Fairy please confess, my curiousity is killing me! :)

Carol
Day -7:  Big Room, Treadmill, Doctors Galore, Address&Directions (5/11/2004)

Hi, everyone

     Today is Day -7, check in day at Fairview-University Medical Center.  I'm in Room 4-231 on unit 4B, the Adult BMT unit.  My room is HUGE (relatively speaking) and I am so very relieved.  The small rooms are claustrophobia-inducing even in non-neurotics.  I also am in an exercise study and was assigned to the extra exercise group, so have a treadmill.  I'm supposed
to walk 15 minutes twice a day while I'm an inpatient, then 30 minutes a day when I get out.  It takes some getting used to, but I'm thrilled to have the activity -- pacing back and forth with an IV pole gets old in a hurry.

    Now the doctors are another story.  Since the U of M is a teaching hospital, there's an entire pecking order of staff to manage.  First Nurse A does the intake assessment and interview.  Then Resident B does a history and and
assessment, asking the same questions.  Plus she's very concerned that my seizure medicine needs to be changed because it suppresses white blood cell production and might interact with the chemo, or some such thing.  Say what?
Now I'm P.O'd, because the neurologist should have caught this a week ago.  Flash ahead a couple hours, during which I've been surfing for info on the meds that she mentioned as alternatives.  Fellow C, an internist who's getting
additional training about BMT's, with a very heavy accent, asks the same @#$%# questions.  Now I'm getting torqued, because the day is feeling like a memory quiz when I know everything is already in the chart.  That, and I have to keep
asking him to repeat himself because I can't understand what he's saying thru the accent.  Plus Fellow C also says we need to change my seizure meds.

    Finally, at 6:30 the REAL doctor, the Attending, shows up.  Heck, no, he won't change my meds because the tegretol has worked well for years, and you don't want to change something, have me seize up and then try to figure what caused it (ie the chemo, the immunosuppression drugs, not enough of the new drug).  And this is his last day as attending, tomorrow another guy starts his 3-week shift.  ARG!  I had asked the social worker, yet another player in my
care team, to try to get me assigned to the group who gets seen by a nurse-practioner instead of the students, so will try to get switched.  

Enough of today's rant.  Here's how to find us:

Mailing Address:

Carol Albright
Fairview-University Medical Center
Unit 4B Room 4-231
420 Delaware Ave SE
Minneapolis, MN  55455

Phone Number:  612-273-0214  (I have the answering machine hooked up, so feel free to call)

Visiting:  Please call ahead of time unless you just happen to be right in the neighborhood.  I'm going to try to get 1 - 2 other people a day to stop by to help with the isolation, but I also know that I may be pretty sick some of the
time.  Anybody is free to visit PROVIDED you are not sick, have been around someone who is sick or have not just had a vaccination.  When in doubt, ask.  No plants, live critters, and check in advance about food since they have some
restrictions.

Parking/Directions:  From St. Paul -- Take 94 going west to the U of M exit (Huron Blvd).  From Minneapolis & West -- get to 94 and go west to the U of M exit (Huron Blvd).  THEN:  Go left on Fulton Street at the stop light.  Go Right on Oak Street -- there's a parking lot on Oak street on your right.  Or turn Left onto Delaware St at the stop light -- the Patient/Visitor Ramp is on your right.  
     If you park the visitor ramp -- BE SURE TO BRING YOUR PARKING TICKET WITH
YOU! and have it stamped, or the parking is $$$$.  
     The hospital is on Harvard Street -- when you come out of the ramp, turn right and walk 1/2 block to Harvard, then left on Harvard -- the big red brick building on the west side is the hospital (500 Harvard Street).

Love & hugs,
Carol
Day -5:  Much Better than Day -6 (May 13, 2004)

Hi, all,
  
     Yesterday was pretty nasty -- the Cytoxin is heavy-duty chemotherapy with all the unfun side effects.  I had a bad headache and face pain, plus the usual tossing of cookies.  At least I didin't hit the doctor, who kindly got me a bigger target to aim at.  Carl stayed overnight, which was very comforting listening to him snore.

    Today I feel like a new woman.  My head doesn't hurt, the nausea is very minimal, and I've walked twice on the treadmill for a total of 1.25 miles.  My brother, Joe, and hubby Carl are back trading shifts with keeping me company,
plus have had a few phone calls during the day.  I'll be getting Fludaribine, a chemo drug, once a day for the next 3 days, then one day of radiation (day -1) then the transplant is Day 0.

Not much else to report.  Love & hugs to you all,
Carol

Updated May 13, 2004 / CA_AML_Emails2.html / e-mail comments to Carol Albright:  calbright@visi.com