Carol's AML Pages: Best of "Spam"

Carol's AML Pages: Best of "Spam"
Volume #1

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)

Fact or Fiction - Is Hospital Food As Bad As They Say? (Sent 6/22/03)

Hi, everyone,

    I'm going to try to send out periodic updates via a mass mailing as energy permits. I feel very blessed by the love, support, and prayers you all have overflowed me with during these trying weeks in the hospital -- it helps enormously.

MED NEWS: Doc says I'm doing very well. I'm now several days past my last bag of "chemlawn" and am picking up steam. Yesterday I was a few quarts low so I got platelets and two pints of blood, and it's amazing what a tonic a boost of hemoglobin is. Tuesday I'll have my first bone marrow biopsy and that will determine what the next steps are. There's about a 50-50 chance I'll need another shorter round of chemo (5 instead of 7 days) if they find too many cells. We'll get preliinary results Tues and the full report Weds, so I'll keep you posted.
    The shingles have me in isolation (to avoid infecting other patients who haven't had chicken pox, or pregnant moms), but they've never amounted to much (THANK GOD!!). The room has an airlock so it sounds like there's a blizzard outside when they open the doors. The view is infinitely better in this room -- I can see trees, lawns, houses etc rather than a brick wall. A PT set me up with a series of exercises I can do in limited space since I can't leave the room to do laps around the nurses station.
    The hospital staff has been fabulous -- I couldn't be more please by the quality of care (NOTE: this does not include FOOD!) I've been getting.

VISITS/PHONE CALLS: I'm at M. Hospital in SLP. My # is ###. I occasionally just unplug the phone if I'm tired, and also am online sporadically, so that can make it hard to get thru. Unfortunately, I can't really say what times are better to call -- it just depends on how well I slept, etc. Not before 8 a.m. & not after 10 p.m. is about the best guidelines I have at the minute.
    If you want to visit, please call ahead of time -- my energy is super-limited so if I've already got a few people popping in on a day I may plead for you to come another day. ALSO >>> if you have the least bit of a cold or other bug or have been around anybody who is sick, then phone calls are best. My immune system is basically shot so I must be very careful not to pick up an infection.

E-MAILS: E-mails are fun to read, especially about what's going on in the outside world. To be honest, I'd rather hear about what's growing in your yard, something goofy your kid did, what you've been up, how projects are fairing etc than lots of anonymous stuff from the Internet. One a day of the goofy stuff forwarded from other places is fine, but much more than that and I hit overload. I feel like Rip Van Winkel in this ultra-quiet isolation room so whatever linkages I can keep up with what real people are doing in the real world the less dislocated I feel. Tell me your goofy stories!

FACT or FICTION: Fact! Hospital food bears no resemblence to real nutrition. After a week+ of the White Diet: Mashed Potatoes with Pale Gravy, Dry sliced white meat, Yellow Beans (Boiled Longer for Your Protection), Milk & vanilla pudding, I complained to my nurse and am now on the Regular Diet .... let's say the red sauce on the spaghetti has never seen a tomato. Tonight Carl brought in Thai take out, so I must be doing better!

Time for supper, but will try to send more later this week.
Love to you all,
Carol
4 South, Room 7

Nurse Faints But Patient Perseveres! Hubby Drafted as Tech (6/25/03)

Hi, all

BIOPSY: The pathologist was a bit of a stand-up comic, which helped enormously. The bone marrow biopsy didn't hurt as much as I expected and I mashed Carl's fingers for moral support. Part way through, the doc tells the nurse to sit down and keep her head down, then to lie down on the floor! She didn't actually faint, but was pretty wobbly, so Carl got drafted to pop the lid on a speciman bottle for the bone chip sample. (Carl says he's never gotten to assist at a bone marrow biopsy before!) Amazingly, the site doesn't hurt, I thought it would ache pretty bad. A snort of ativan didn't hurt (it's an anti-nausea/anti-anxiety drug that makes you pretty sleepy).

PT: I wandered down to physical therapy today (actually got a ride in a wheelchair) and this was the first time off 4 South for TWO WEEKS!! I have to wear a mask whenever I leave the floor, but big whoop. I walked up & down their mini-stairs (3 steps) like 5 times and didn't get winded, plus did leg exercises and walked 1000 feet, so the PT said I really don't need PT. The trick is convincing some of the more "mother hen" nurses to let me walk around the whole floor, so my nurse this evening is going to get the doc to make a order to let me leave. Otherwise it's only 120 feet circling the nurses station (hmm, so a quarter mile is 11 laps) and after a few rounds I can tell one leg is getting shorter than the other one.

NEW 'DO: Chemo is notoriously hell on hair, so rather than let it all fall out I drafted my sister Barb to give me a trim last week. There's a great organization called "Locks of Love" that collects tresses 10" or longer and makes wigs for kids out of them. Well. Try doing a haircut with teensy suture scissors; Barb had to divvy up my thick mop into smaller hunks and snip, snip, snip. I think it looks really cute -- it's short & curly on top and really, really short in back. Much more comfortable to deal with in the hospital. I'd been threatening for years to cut it all off but some of my friends objected (thought I'd look like a banker).
Meanwhile, it's not falling out! I'm at day 14+ and it's still there. Who knows, maybe it will just thin out and not totally turn me into a Tibetan monk.

Love to you all. The PT said the nurses told her they've never/rarely seen someone bounce back this quickly from AML, and I believe it's due to the prayer, love, & support you've all sent my way. If the biopsy looks good, I should be out in two weeks or so.

Carol

Anchor's Away -- Marrow Clean as a Whistle! (6/27/03)

Hi, everyone,

BIOPSY RESULTS: WHO-HOOOO!!! Got a thumbs up from the oncologist, the bone marrow is 'empty' meaning they didn't find any bad cells (actually, they didn't find very many cells at all). My hubby Carl, brother Joe & his wife Nancy & sis Barb were all here to cheer. So, now I get to twiddle my thumbs for the next couple of weeks while my stem cells start cranking out good white & red cells & platelets. I'm still at risk for infection since my immune system is basically zero'd out, but so far, so good. My appetite is pretty good, which is another problem leukemia patients can hit, not being able to eat enough.
I guess leukemia is really two problems -- the marrow spits out too many adolescent white cells and then they don't know when to leave home. The next phase after I get out of here is to go home for a monthish and then back in for a week of chemo. If that goes well, that cycle gets repeated several times until the leukemia is fully in remission.

I need to call a few folks so that's it for today's installment.

Thanks again for your prayers and good thoughts -- it's obviously working!

Love,
Carol

Going UP (6/29/03)

Hi, everyone!

The name of the game for the next 1-2 weeks is getting the blood counts up from the pits, and today both the red & white counts went up -- the whites are still super low but they seem to have turned the corner. They may even start backing off on the IV antibiotics tomorrow. My endurance is getting better -- I've been walking the floor 4 - 5 sets of laps a day, so if the main hall is close to 1000 feet that's almost a mile. The appetite is directly correlated to the menu; tonight's turkey sandwich paled in comparison to the homemade spaghetti with red sauce & sausage Carl brought from home, so I snitched a healthy portion of his leftovers.

Attached is a small photo of me & my shadow, decorated with a teddy from Mom & Dad Haugan; I also have CLOTHES on which is a relief from the hospital garb. My hair looks cute in the pic, but alas, it is indeed starting to fall out in earnest, so by the time I see some of you I may be a blonde, depending on if I decide to get a wig or not.

Not much news otherwise. Last night we had another "Code Gray" (as in storm warning), where they run around and (get this!) shut all the blinds that are sandwiched between the double-panes of the windows. Sure makes ME feel secure. Last week we also had a "Code Black" and then you're supposed to take the stuff off the window sill. If the weather gets that bad, I'm either hiding in the shower or ducking beind the nurse's station!

Love to you all,
Carol

Twiddling thumbs & new knitting project (7/2/03)

Hi, everyone

    Ok, so I was a little optimistic -- my WBC's are still sleeping it off and haven't budged from their long nap. The doc's have started me on a growth factor (?) that should help the bone marrow get cranking, and hopefully by the end of the week we should see some change. Evidently when they start dividing they do so in earnest, with the numbers doubling & not just incremental increases.

    I spiked a fever Monday night so was pretty blah yesterday; they started me on yet another antibiotic so I think we have the bases all covered for bugs. "90%" of patients run a temp when they're WBC's are so low, so not surprising I did as well. They do try to culture out the bug (probably one of my own and NOT anything anybody brought in) but sometimes they never find the culprit. It went up again last night but the Tylenol took care of it; today I feel fine.

    In the meantime, I'm working my way through the Harry Potter series (1/2 way through book #3), doing laps in the 4th floor hall, and Carl's bringing over a new knitting project (THANKS!!! Nancy) which I'm itching to get my fingers into. It's another Norwegian sweater for my Nordic hubby.

Love,
Carol

Belated Update/My Latest, uh, Hairdo (7/7/03)

Hi, Everybody!

    Sorry for the delay in communication -- I was hoping to have exciting numbers to report (no such luck) and then spiked a really nasty fever last night (103.5). Bleck, bleck, bleck! The doctors and nurses reassure me that the white blood cells WILL come back, it's just a matter of time.

    Attached is my Tibetan Nun Marine look, which feels really cool -- rub my hand one way and my scalp feels like a hedgehog, run it the other and it's silky. I never knew your head had a grain, like velvet fabric does (not that velvet feels like a 3-day old beard). I have an assortment of scarves and hats, thanks to my sister Barb's shopping prowress, and when I finally get out I may go play with a "cranial prosthesis" (I kid you not!), the insurance buzzword for a wig!

FACT OR FICTION: It's Impossible to Get a Decent Night's Sleep In a Hospital...
    FACT! Oh, lordy is it a fact! I finally hit the screech point yesterday and had the nurse put a sign on my door saying ENTER AT YOUR OWN RISK! so I could get an uninterupted chunk of time (actually the sign was more politic). On a not atypical night someone is popping in at least 5 or six times between 11:00 and 4:00, between nursing assessment, vital signs, two baggies of antibiotics (hopefully they set it up right so the alarm doesn't go off to boot), a trip to the loo (compliments of all the IV liquids), collect blood samples, etc etc. Oh, and sometimes they forget to turn off the light in the vestibule, or shut the inner door so that it sounds like a banshee howling through the outer door. <END WHINE>

HARRY POTTER AND THE NORDIC SWEATER: Is not the title of book 6 -- I have the band done for the sweater, about 4" of a "groovy" scarf Cindy G brought in for me to knit (too much Austin Powers poisons the vocabulary), and am 350 pages into Goblet of Fire. So help me God I better be out of here before I finish the new book, but then God and white blood cells don't necessarily follow orders very well, hence the need to be patient.

I did get to go outside yesterday for the first time in nearly 4 weeks! Flowers, birds, warm sticky air, sounds, how amazing to escape from the Cancerland bubble if even for 1/2 an hour.

That's all for today, love to you all and thank you thank you! for your prayers and kind cards, e-mails and thoughts,
Carol

FACT OR FICTION: Nurse Ratchet Exists In Real Life .... (7/8/03)

Hi, all

No number news today, but the doc continues to be cheerful and say Any Day Now!! He did finally say that if it goes past 30 days by a piece they would probably recheck the marrow, but I am still well within normal limits, no matter how antsy I'm getting. Got another baggy of platelets and probably will get a coulple units of blood tomorrow, so am eternally greatful to all you blood donors. A few people have asked if I need to replace the blood I've used and they say no, I don't need to have people run out and roll up their sleeves, other than it being a good deed.

NURSES: Fiction! Wow, is the staff is great here at M. The nurses work 12 hour shifts so you really get to know the core group well and they're all competent, compasionate and generally funny. The aids are a good bunch as well, and several are either nursing or pre-med students so they're very dedicated.

Hope things are going well with you all, and thank you mucho for your personal notes, cards, calls and gifts, they do indeed help pass the time.

Carol

Gearing Up For Reentry (7/10/03)

Hey, everyone!

    Finally have good news to report (or more good news) ... my WBC jumped from 500 yesterday to 1,300 today, so if they keep that up I will indeed blow this popcorn stand and go home for awhile. They stopped all the antibiotics yesterday except one (Levaquin) in case the others were suppressing the bone marrow from doing its job. The doc also dropped the cut point for getting platelets from 20,000 to 10,000 in the hopes that my levels stabilized anyway (and over time your body decides it doesn't like other people's platelets anyway so you can get reactions, or else they just kill off the newcomer cells.)

NEXT STEP SCENERIO....
    Dr. L., who does indeed have some grey hair and seems to know what he's talking about, said I'll probably be home for 1-2 weeks, have another bone marrow biopsy a week or so after I'm home to make sure nothing bad has reappeared. Then I'll go through 4 rounds of "consolidation" chemotherapy -- one week in the hospital getting chemo, 3 weeks at home recuperating, repeat 3 more times. The chemo will likely be given Mon, Weds, Friday and be two high doses of Ara-C, the drug they gave me as a continuous drip during "induction" therapy.
    When I'm at home, I'll need to go to [the clinic] twice a week (either M & R or Tues & Fri) to have my blood counts done and my Hickman catheter dressing changed. I don't know if they tell me right away if I'll need RBC's or if I have to go home & come back.

WHERE I NEED HELP FROM THE LOCAL CHEERING SECTION (Driving)

    Since I had a seizure 6/13 (yes, a Friday!), I can't drive, so I'm going to try to sweet-talk people into taking turns getting me in for my twice-weekly appointments. I suspect Carl may want to come along for any doctor's appointments and the bone marrow stuff, but getting help from you guys would both reduce the burden on Carl and be a treat for me.
    If you live within a reasonable drive and would be willing & able to take me to an appointment at least once, please drop me a note. They'd be during the day, and at this point I don't know how pokey they are. I'm going to try to schedule them in the a.m. (like 10ish) to avoid rush-hour traffic, and the inevitable backlog in clinics in the afternoon. Let me know what day(s) work for you and I'll try to get on the best cycle (ie M/R or T/F). To hit a 10ish appointment, I think we'd need to leave my house around 9:30-40ish. (I could even treat and buy you lunch in the hospital cafeteria -- JUST kidding!).

More on reentry stuff as I know more, but this is the biggest one to coordinate at the minute.

Love & cheers,
Carol

Going Home TODAY!!! :) (7/11/03)

WHOPEEEEE!!!

    Dr. L just stopped by and asked how I'm doing, "Antsy!". And said I could go home TODAY! My WBC is 3,000, and 1,000 of those are the all-important neutraphils (sp?); the cut point for going home is 500, so I'm at twice that. The platelets are even gradually increasing on their own, and the Hg is 11.3 which isn't that far from normal. Halelujah!!

    I had a hard time sleeping last night, kept waking up like the night before Christmas, wondering what my #'s would be today. I was guessing going home Sunday or maybe even Saturday but I never guessed today. This is too weird. After over a month in Cancerland living in a bubble the outside world does not seem very real, even when I walked on the grass today when my brother, Joe, came to visit. I've got quite a bit of stuff to pack up, even after sending a few loads home with Carl the last few nights (books mostly).

    I'll find out when the doc comes back to discharge me how much into the public I can go, like can I go to Trotters or to meetings or grocery shopping or what. Or down to the boat for that matter. But hey, just getting OUT OF HERE will be heaven. I've been unplugged from the IV pole mostly for the last two days and I find it's going to take time to not stop and look for all the tubes to make sure I don't yank one accidently. I've had to wear a mask anytime I leave me room, so not sure where all I'll still need to do that.

Enough for now; I couldn't have stayed (quite) so sane without all your support.
Love,
Carol

Struggle for "Normalcy" (7/15/03)

Good morning, everyone!

It's great to be home! No one is crashing in and out of my room every hour, I'm not tied to the IV stand anymore, and I don't have to pee in a giant cup (and then bug the aids to empty it) so they can make sure I'm not getting dehydrated. I wasn't sure I'd be able to sleep very well since I'd been relying on Ativan to help me sleep - HA! Other than one hospital-related nightmare and the neighbor kid's noisy party Friday night, I've been sleeping like a rock, even through the night.

Every day I'm doing a little better, even walked a slow short mile with Carl and Muffin yesterday, but is so weird being home and not being "normal". Like why do my legs feel like lead going up the stairs? Where's my hair? How come I cringe when the phone rings? Oh, yeah, I spent a month in the hospital and I have leukemia. I knew I kicked into crisis mode in the hospital and that most of what happened wouldn't really sink in until I was over the major survival hurdles and back at home. So I'm struggling to try to return to a "normal" routine while digesting reality and adapting to what I can and can't do, and taking the time to do what I need to do. It is such a relief to be back in my own sanctuary and have private space again, as well as meet up with friends I haven't seen for a month.

MED NEWS: Nothing new to report, other than the bone marrow biopsy got moved back to next Monday. I'm getting irked with Doctor On Rounds This Week saying A, and Doctor on Call Last Week saying Not A. One said you should wait to do the biopsy until your bone marrow had a chance to stabilize so you don't get falsely high #'s of blast cells, so I called "my" oncologist's nurse to see if the test should be postponed. He rescheduled it, but because my platelets (blood clotting cells) are low. Today I get my first blood test since getting out, and they check/rebandage the Hickman (big whomping catheter used for chemo & IV's). I'll be going in for the blood test/Hickman redo twice a week when I'm out. Since I don't see Dr. D. until 7/24, I'm not sure I'll start chemo 7/28 or a week later - stay tuned.

UPDATES: I'll be sending these more like once a week+/- since I'm medically stable and not much exciting going on.

Love,
Carol

So Far, so good -- biopsy no leukemia evident (7/23/03)

Hi, everyone,

So far, so good -- Monday's bone marrow biopsy showed no sign of leukemia, according to Dr. D, my oncologist. I will be going back in this Monday, July 28, at 9:00 a.m. (breakfast at [bakery], NOT the hospital!) to start the first round of chemotherapy intended to blast away any hidden leukemia cells. I'll send more later, but wanted to get this bit of good news out the door.

Love,
Carol

Checked Into Spa for One Week (7/28/03)

Hi, all

I'm checked in now at 'Club Med', the spa for chemotherapy. I'm in Room #6 at M. on 4 south, one next door to where I was before (and my neighbor checked in today at my old room). My phone number if ###. S., my nurse du jour, says the chemo doesn't necessarily wipe you out until you get home, so hopefully the side affects won't be too obnoxious.

I'll probably keep a similar schedule as before -- up around 7:30ish, quiet time between 1:30 & 4:30, and then turn in around 10:00. Give me a buzz if you want to come over to visit to see how I'm doing. I may be in better shape this time (I hope!) than last go around.

MED INFO: The chemo I'm taking is called Ara-C and I'm getting 3 gm/m2 (3 grams per square meter, very weird measure) twice a day Monday, Wednesday and Friday, along with drugs to control side effects (a cortisone relative, and two anti-nausea meds).

Not much else for now -- have a few questions to answer for a client and a stack of books and knitting, plus Carl's hanging out with me today.

Love,
Carol

Going AWOL (sort of) from Club Med (7/31/03)

Hi, all,

    Chemo is going surprisingly well -- I've had 4 of my 6 baggies of Ara-C for the week, and other than feeling green I've been doing well. The trick with the nausea is asking for the magic lorazepam (Ativan) when I start feeling queasy rather than being miserable for an hour, expecting it to go away. I'll get my last two doses tomorrow, one during the day and one at night (which I sleep through anyway).

    Today Carl and I went over the wall (with permission) and hung out for awhile at a Caribou, walked along Lake Calhoun a short bit, sat and watched the joggers go by, then picked up take out to bring back to Club Med to eat while snuggled into my hospital bed (READ: squished between the safety rails trying not to drop crumbs) watching Hercule Periot (actually, I snored, he watched).

    Barring anything unusual, I'll be going home Saturday morning or early afternoon. My counts will continue to drop for the next week+ so will need to check for fevers and may need to check back in if I start running much of a fever. But hey, beats staying in the hospital for a month!

Love,
Carol

Home Again (8/4/03)

Hi, all

Just a short note -- I'm home again (actually, got home Saturday morning) and doing ok. The greens are backing off, and mostly I'm just tired and fuzzy-headed. Today's excitement was filling in forms for a doctor's appointment and getting blood drawn/bandage changed (#'s are pretty good for now). I'll be home for three weeks before the next round of chemo. I'm also going to the U of M on the 14th for their two cents on a bone marrow transplant as a possibility, so not sure how that fits in the picture along with the chemo (ie if they do the transplant, do I still get the next round of chemo or not).

Love,
Carol

The (Hundred and) $64,000 Question (8/7/03)

Hi, everyone,

$164K:
    Wow, thank heavens for good insurance! A few months ago we shifted over from COBRA to our current Medica policy, and at the time we had a few options. Hmm, I thought, 3 options have lifetime dollar limits ranging from $1,000,000 to $3,000,000, which is lots of zeros, or then there's this more expensive/higher co-pay policy with NO lifetime limit. Planning on living to a ripe old age, I figured you could conceivably hit $1M pretty easily, so we bought the no-limit policy.

    Guess what 31 days in intensive care goes for? $164,000+! Yowza! The room was $45k, nursing care was $26k, drugs (chemo etc) went for a mere $47k and blood for $9700. And the fabulous thing is Medica paid everything except for what was left of our yearly max for me, they didn't refuse anything. Boy, am I relieved.

H 8.7 -- W 0.3 -- P 7:
    So long as we're on the subject of numbers, today's CBC's were pretty spectacular, so I'm off to M. Hospital tomorrow (outpatient ward) for red blood cells (normal HBC is 12 - 15, so I'm getting a little pale) and platelets (normal is 150 - 300). And since the white blood cells are really low, I need to stay home and wear a mask when I go out. The chemo causes the numbers to drop for at least one to two weeks after the last treatment, so I'll likely need more transfusions before the next round of chemo.

Checking Out Possibility of a BMT (Bone Marrow Transplant) at U of M:
    My siblings have both been tested (B's already in the bone marrow transplant database) as have I, so next Thursday I find out if either matches my system. We meet with one of their doctors to hear the pros & cons and then get a tour of the unit and meet with a social worker. If you want to read more about the department, their web page is at http://www.fairviewbmt.org/. So far I've been pleased with the support staff help with answering questions, and they have an amazing salt-water fish tank in the waiting room (so must be a good place :) .

[Whine On]       Geez, being sick is time-consuming, between filling out forms, trying to figure out who's supposed to be tested where when, twice a week or more blood tests, all-day transfusions, researching alternatives, and occasional mental/emotional overload. I haven't gotten squat done for my clients lately other than printing e-mail requests to not lose track of to do's. The dopey thing is I don't feel "sick" other than being fatigued and fuzzy-headed. I'm setting daily goals for myself, writing in my journal, reading lots (ie Healing and the Mind by Bill Moyers, It's Not About The Bike by Lance Armstrong, Full Catastrophe Living by Jon Kabbat-Zinn), walking 1-3 times a day on short outtings with Carl & Muffin, plus time with family & friends so overall I'm coping pretty well. But I do need to adjust the expectations of how productive I'll be to match the reality of what I can do which is frustrating. [Whine Off]

Thanks for "listening",
Love,
Carol

Back At Club Med For A Few Days (8/10/03)

Hi, everyone!

    Well, as promised, my blood counts dropped dramatically (if they didn't, I'd worry that the chemo didn't do anything) and as predicted, I spiked a fever. So the middle of Saturday a.m. (Friday night?, whatever 3 a.m. is) Carl & I headed back to M. to get me plugged into IV antibiotics. I slept good chunks of yesterday and got a good night's sleep last night, so feel pretty perky today. I still have a low-grade temp (99.2) and they won't spring me until it's been normal for at least 24 hours and the counts start going up (I hit an all-time low of 0.1 for the whites yesterday) or at least that's what the doctor du jour said yesterday. This is dumb, but I actually feel more comfortable here with the artificial immune system (the giant HEPA air filters & antibiotics, plus the doting nursing staff) than at home when the counts are basically ze-ro. They're 8.5 - 0.3 - 23 today, and amazingly enough I'm not bushed with the low hemoglobin. I'll probably get another quart tomorrow (cut points are 8 for reds and 10 for the platelets).

COFFEE HOUR ANYONE??

    I'm teaching myself bird songs (thanks Nancy!!) via a CD & bird book, reading lots, getting caught up on correspondence, watching a Sister Wendy art video, and am definitely up for visits. Carl is usually covering the evening shift. I'll probably be here thru Tuesday+, so if any of y'all have some time to stop by for a mid-morning coffee break, or a late afternoon chat, that would be lovely. I actually like having quiet time, and since I'm not get anything exotic or scarcy like chemo, I don't need anyone at any particular hour, but I know I'm going to be more chipper if I can have contact with the outside world. (Does that make any sense?? It reads like "go away -- wait, don't leave me" which is not quite what I intended!)

    I'm on 4 South, room 9 (a room with a view). My phone # is ###. If I'm napping or sending/getting e-mail I'll unplug the phone, otherwise the line is open.

Love to you all,
Carol

Twas the night before .... (8/20/03)

Hi, all

Tomorrow I'm meeting with the bone marrow transplant people at the U of M, and either it's the caffeine talking from this afternoon's iced coffee or I am truly excited to be finally talking to these folks. I've done a lot of reading of the last few days -- I highly recommend the brochures at the National Bone Marrow Transplant Link, http://www.nbmtlink.org/ -- they're thorough, informative and very human, as opposed to some of the terrifying and clinical brochures I've been plowing through (unfortunately from the Leukemia Society -- they need better writers!). We won't know whether or not my sister Barb is a match or not for probably two weeks or so, so tomorrow's talk will be partly hypothetical I imagine, but at least they could tell me what my options are and cost/benefits.

Several people have asked if they should be tested if I need a non-related donor. I'll check tomorrow and let you know. If you want to do a good deed anyway, contact the National Bone Marrow Donor Program (http://www.marrow.org/, 800-MARROW-2 or 800-654-1247, or the American Bone Marrow Donor Registry, http://www.charityadvantage.com/abmdr/Home.asp, 800-7-DONATE. There's always a need for donors, and the process is much easier (they pull the stem cells from your blood, so it's like giving blood or plasma.)

TODAY's FUNNY ... In 'Real Life Adventures', Nurse talking to Doctor: "Doctor! Come quick! The patient in two-twelve just swallowed his lunch!" Heading: 9 out of 10 doctors recommend against consuming hospital food.

Love,
Carol

Hmm, Now What?! (BMT Trip to U of M) (8/22/03)

Hi, everyone

    Carl and I went to the U of M's Bone Marrow Transplant unit yesterday to meet with Dr. K regarding whether or not a BMT was useful. Well, it depends. If my sister does NOT match on the final two HLA antigens, then I only have chemo and save BMT for after a relapse. If she DOES match, then I'm truly baffled. It all depends on whose survival numbers you believe. If we take Dr. D's, my oncologists's, with the most pessimisstic numbers, then the transplant buys me up to a 35% improvement. If we believe the BMT guy's numbers, it may only give a 5 - 15% improvement. Then fold in the fact that 20% of people don't survive the transplant in the first year, plus BMT can take 6 months to a year (or more) to recover from, and the decision is really muddied.

    My oncologist, Dr. D, is going to talk Dr. K, the BMT guy, and try to get a better understanding of each other's %, plus do some research into what's the real #'s. In the meantime, I start my next round of chemo at Club Med on Monday morning, and should be back out on Saturday, so the next three weeks are pretty easy to predict: a week in the hospital, a week for the numbers to crash (hopefully avoiding another week in the hospital, but not likely) and then another week or so for them to recover. We find out whether my sister's cells match mine probably next week.

    The truly exasperating part of this process is two of my doctors -- Dr. D and Dr. S (who's a board certified hematologist) both recommend doing the transplant if Barb matches me, but the BMT guy would only "offer" a BMT, ie he's the least enthused of the 3. So I have this sense the doctors are pulling on other information than the technical %'s for whether or not BMT would help. Does the BMT guy only remember the train wrecks, as Carl asked? Do the other two only remember the times where BMT was a life saver? ARG!!!

I'm off to [the bakery] for breakfast and life support. I wouldn't make it through this with the love and support and prayers you guys have been so generously providing during this trial.

Love,
Carol

Round 2 at Club Med (8/25/03)

Hi, all

I'm back at Club Med (aka M Hospital) for another round of chemo, given twice a day Monday, Wednesday and Friday, with Tuesdays and Thursdays off. I should be out Saturday morning. This time the meds are aggravating my system a bit more, so will need to figure out the magic quantity of Ativan to save me from the periodic dash to the loo to visit the porcelein god. Too much Ativan and I'm asleep, not enough & it doesn't do any good. So it goes.

I'm in room 4 on 4 South, and my number is ###. I need to keep this short as my tum is not cooperating so am off to bed & will try yet another anti-nausea med. Fun, fun!

Love to you all,
Carol

Limbo Land and Mac & Cheese (8/29/03)

Hi, all

The last few days have been pretty rough, and I finally figured out that part of my distress is wonky side affects for Anapsyn, an anti-emetic that's supposed to take care of a side effect from the chemo. Oy vay! Side effects of side effects. Sure, I no longer needed to toss my cookies, but I felt zonked out and felt like I'd guzzled a pot of espresso -- tired, wired, agitated and apathetic. Yuck, ish! So today I got smarter about asking for Ativan more frequently, spent 45 minutes with a body scan meditation CD ("Try not to fall asleep' drones this very new age mellow voice, gently exhorting you to get in touch with your toes, zzzz, zzzzzzzzz), several nice phone calls later and a few visits, so am holding my own. And I'll be checking out tomorrow morning, yea.

So it's limbo land for the next 10 days or so, until we find out whether my sister's blood (HLA type) matches mine. According to Taliban Ted, (just walked in to take my vital signs) who is registered with the FBI due to his college job in a microbiolab working with staph enterotoxins, the quality of care he provides is most excellent and at its peak. He's good enteretainment, when he shows up after his day job complaining of a mysterious eye infection, Gee, wonder what buggie I got in my eye!" (It was not anything exotic and dangerous). My only hope is he'll get early admission to medical school, which may keep all of us safer!

Love,
Carol

HP Reporting In With Match Results (8/30/03)

Good evening, everybody,

        Got a quick call from Dr. D this afternoon while I was napping at home (I just checked out this morning after finishing Round #2 of consolidation). My sister is not a match -- her HLA typing matches mine on 4 of 6 markers, which is not close enough for a transplant. As she said, HP (Higher Power, aka God) has reported in with the results and this made the decision to transplant or not very easy. The choice was really decided 42 years ago, so this is just the unveiling.

        To be perfectly honest, I'm relieved. The best shot the transplant would give me is a coin flip (50%), and when you meld that in with a 20% chance of dying just from the transplant, not to mention the ordeal of the transplant and all its potential nasty complications I wasn't thrilled. The doctors finally agreed to recommend the transplant had we matched, but I still would have wanted to hear a bit better explanation why, especially since it can take 6 months to a year to recover. And if all I have left is say 3 - 5 years, I'm not sure spending it incapacitated or worse is a good trade off. So, we save the transplant for "when I relapse" is how I said it to Dr. D., who replied that I still might not ever relapse with just the chemo.

        So for once I can actually enjoy a timeview of longer than the 32 minutes until the next Ativan dose, or the 3 days until I'm discharged, or the hour of distraction of a Buffy the Vampire Slayer. I can actually give you a SCHEDULE, woo -- hoo!!:

        Consolidation Round #3: Monday 9/22 to Saturday September 27
        Consolidation Round #4: Monday October 20 to Saturday 10/25
        Halloween, October 31 --- When Carl paints a Jack-o-Lantern on my fuzzy skull to scare the kiddies when I hand out treats!

I called a buddy this afternoon and just cried on the phone -- I feel like I have part of my life back. I love the fall, the mysterious changing of the leaves. Why make the enormous maple at the end of the alley burn in crimson for no other reason than God thinks it's pretty? We can go hang out at the boat house, as soon as we figure out what the @#$% combination is for the lock on the door that we keep forgetting. Maybe I can restart work and throw away the forms for Social Security Disability. Everything I've read about BMT is that it's not a silver bullet -- when it works, it is a life saver, but it is not without it's heartbreaking trainwrecks. And as they say, there's no reason why I can't be in that little % of people who do beat leukemia on high dose chemo alone.

Love and hugs to you all from your bald and tired buddy,
Carol

Crummy Week+, But Back Home Today (9/15/03)

Hi, all

    Well, it's been quite a hellish week+.   This is the abbreviated version, rather than the blow by blow. A week & a half ago Thurs (what is that, 9/4?) I went to Methodist for a transfusion because my hemoglobin and platelet counts had dropped (not a surprise, they're supposed to do that). Unfortunately, I started out with a lowgrade temp, and by the time they transferred me to 4 South a few hours later it was 104 and that night 105.1. I had sepsis, an infection of the blood (E Coli), my blood pressure crashed, etc etc but by morning things were more stable. Over the course of the week I picked up a fungal pneumonia & pleurisy (inflammation of the sack around the lung), a bug in my gut ran amok due to all the antibiotics (Clostridium difficilie, a spore-forming bacteria), and a major case of cold sores (a virus). Basically a petri dish with one of of almost everything.

    Today I'm going home and will continue to get the anti-fungal once a day as an outpatient, and can take the anti-gut bug & anti-viral as pills. I'm pretty weak to say the least, but on the mend. The major wrinkle is that I'll most likely need to stop chemo -- since the cure almost killed me then you need to balance the short term with the long term. I'll find out for sure when I meet with my own oncologist in a week or so, but that's what the hospital doc's have been saying, and since one is the board certified hematologist I trust her opinion. I don't know how that will affect my odds, but I can agree with the judgement -- I can't fathom going through another week like this last one.

    Most to all of the bugs, by the way, are my own, and not anything I picked up from anybody. It's just that once the chemo caused my immune system to collapse there's no one guarding the gate anymore, so the bugs that live in your own gut or whereever can just explode. The consolidation chemo, from what last week's doc explained, isn't effective if you wait too long between cycles, so its not like I can recover for 6 weeks and then try again.

    Since I need to go to the clinic everyday either I or Carl will start working down the list of people who said they could drive me to line up transportation. The medication takes an hour to drip, and driving to & from the clinic takes an hour, so it's probably a 2 1/2 hour event.

    I need to figure out a Plan C for communications for when I'm really sick, as the e-mail routine doesn't work with me being the one sending the messages. Carl's getting the addresses set up on his computer, so he may be sending out some of the updates in the future if I'm really punk.

Love,
Carol

Counts Near Normal, But Then I'm Not a # (9/26/03)

Hi, all

    Well, hey, some good news on the AML front -- my blood counts are darn near normal across the board. I did go in for a refill of reds yesterday, so that helps the energy level greatly, but it looks like my own marrow is starting to crank them out as well. (For the numerically inclined: WBC 4.5, Hg 11.3, Platelets 121).

    But then I'm not just a number, which is what I swear I feel like some days. The last go around with the sepsis etc was devastating emotionally in addition to physically, and I'm slowly getting my feet back under me. I pulled a muscle in my left calf when I was in the hospital that hasn't heeled, so I'm limping and not able to walk very far. I see my doc on Thursday and if it's not better then will get a referral to a physical therapist.   Monday I get another CAT scan to make sure the mushroom in my lung is gone (Sunday is my last dose of the anti-funal IV). And I'm looking for a shrink who deals with seriously ill folks and have a referral on one I'll probably check out next week. I vowed I wasn't going to spend however many days I have left curled up in a corner in fright or depression, and having someone to whine to who can put things in perspective will help.

    The one upside to having to go in every day for the IV meds has been visiting with all the friends and neighbors who have so kindly driven me back & forth to Methodist. It's been lovely getting caught up on people's remodeling projects, what the kids are up to, vacations, new pets, the works. Carl and I are back on our regular morning routine going to [the bakery] for breakfast and sometimes to other coffee places for an afternoon outing. He's in the kitchen growling at the no-purpose flour he accidentally used to make pizza dough --mmmm, homemade pizza with carmelized onions & three cheeses!

That's it for this week's update. Love and hugs to you all, and thank YOU for your help and prayers,
Carol

If You Don't Like The First Answer, Wait A Week (10/6/03)

Hi, family, friends & colleagues,

MED NEWS:
    Wow, all 3 of my blood counts are NORMAL! A first I think since before I got sick (WBC 4.2, HgB 12.1, Platelets 312). I had a CAT scan last week of my lungs and met with Dr. D, my oncologist on Thursday. The mushroom has shrunk to about a centimeter-sized spot; he later talked to Dr. S, the infectious disease doctor, who said to continue with the anti-fungal IV medicine for another two weeks in hopes of totally getting rid of the creature. So daily trips again until October, uh, 18th? from 9:30 to noonish roundtrip -- several friends have already volunteered to drive me and I really enjoy their company.

    Meanwhile, Carl and I just about fell over when Dr. D said that I would be continuing with the chemo. Say what? But Dr. P and Dr. S both said to NOT continue the chemo, we explained. He talked to 4 of his colleagues then called us back that evening -- consensus was indeed to continue with the chemo. Two of the doctors had been at Harvard at a CME course where they said the 3rd (or more?, not sure) round of consolidation chemo was worthwhile. I am trying to reach Dr. S to get the word straight from her and find out how the benefit/risk ratio was tipped based on the info at Harvard. I won't be taking any anti-biotics nor staying longer in the hospital when my counts drop because they've found that anti-biotics can sometimes cause problems. Whether or not I get an infection or the type of infection is as much a roll of the dice as anything is the impression I got from Dr. D.

    And the furry tongue is still furry, but I think it's getting better -- I'm just rinsing now with salt water (swish & spit) as opposed to Nystatin (swish & swallow).

HEAD NEWS:
    And to say the least, this took a few days to digest which is why this note is late getting posted. If 5 of the 5 he talked to (well, he was one of them) said the chemo is beneficial, them I'm game. Unfortunately with leukemia it's a bit of a pay now or pay later -- I'd rather have a round or two of chemo now and God willing avoid a relapse and a bone marrow transplant later, or at least postpone it as long as possible. The chemo doesn't faze me -- it's the uncertainty of getting sick afterwards. So I've been diligently focusing on what I CAN do, like walking (finally up to a mile as my leg is doing better), my 'mindfulness meditation' (yoga for 45 minutes one day, sitting meditation on other days), reading, time with loved ones and ...

HOUSE NEWS:
    ... cleaning like crazy. Which is how I discovered the upstairs toilet (circa 1960ish) has an enormous crack in the supply tank. Thank heavens it didn't split and drown the upstairs. Carl just lugged up the replacement and will put it in later today.

But it's gorgeous out, the Painted Ladies (butterflies) are loading up at the purple asters, and Carl, Muffin and I are off for a walk.

Love to you all,
Carol

Update (10/22/03)

    Hi, everyone,

    If you've tried to call in the evening lately, chances are close to 80%+ (and one mouse got away) that you got the answering machine. A few times we've really been out (like down to the boat to winterize her), but the remainder I've been dodging the phone. Or more nearly, dodging The Question (how are you doing?). Or I'm just tired and need quiet time.

        "How're you doing? What did the doctor say about ___?" I'm getting stumped on how to answer that question, which is making me crabby. I am stronger. My hair is finally growing back. I do want to jump from a bridge. Or drown myself in fudge sauce. I am planting daffodil bulbs. It's all true, simultaneously, it dawned on me today. Leukemia is a weird disease. You can't just cut it out and say "here! the tumor is gone!" The treatment is dangerous, but it's the best shot I've got. So if you get a dazed look when you ask what's up, it's because I'm not sure which answer to give.

    I've been reading Life of Pi, the allegorical story of the Hindu/Christian/Muslin Indian boy cast at sea in a liferaft with a tiger. A core of his experience is how he deals with fear, of the tangible, hungry tiger, of running out of water, of never making it to shore. I feel like we're all Pi in the boat, learning to deal with concrete uncertainty, as Carl says.

MED NOTES:
    Dr. S, the hematologist, called yesterday (she'd been on hospital rounds last week). She said deciding whether or not to do more chemo shouldn't be decided while you're still in the hospital, so she & Dr. P were premature in offering opinions. You need to see how well people recover, and I have recovered very well. 3 or 4 rounds of chemo ("consolidation") is definitely better than 2. Just because I've developed infections with the last 2 rounds when my counts crashed does not predict whether or not I'll get sick with future chemo, she said. It's just chance.

    Had the CAT scan for the fungal infection in my lung Monday, will know the results Thursday when Carl and I meet with Dr. D, the oncologist.

    I will likely start chemo again next Monday. My counts are good (WBC: 3.7, HgB 12.1, Platelets 250kish), so unless the CAT scan shows something off, I get back on the treatment wagon again.

Love,
Carol

Round #3 Starts Monday (10/23/03)

Hi, gang

    Just a short note today. Dr. D says the CAT scan showed that of the three spots I had before, one is gone, one is smaller by 50%, and the other one got away (just kidding). The last spot showed no change, which leads them to believe it may just be scar tissue from the fungal infection. I told him I was worried about one other thing and stuck out my tongue at him, which made him laugh. NO, no, seriously! I said, isn't my tongue fuzzy?? Not hardly, if you have a real fungus in your mouth it's REALLY fuzzy. I must just be a little paranoid.

    So, I start round #3 of chemotherapy at M Hospital on Monday, checking in at 10 a.m. after breakfast at [the bakery]. Same routine as before, two doses each Monday, Weds & Fri, I can go out on the town Tues & Thurs, then home on Saturday. (If you send a card to the hospital Saturday, I'll get it Monday or Tuesday -- HINT HINT!
[hospital address deleted]
(I told Dr. D I only wanted rooms 4 thru 9, 1 - 3 have lousy views, and 10 is too close to the sink, and he scribbled something in his notes: ... "Patient very demanding" ... )

    I need to run order a pizza -- Carl is off getting a video (Matrix 2, hopefully), and Muffin is recovering from a tummy bug (who knows what she ate).
Love,
Carol

Back At M. with Temp (11/5/03)

Hi, all

    My counts dropped, as predicted, and @#$%^ I'm once again running a temp of 101.1 with chills, the magic combo for calling the doctor. Dr. C, the on-call oncologist says to head to 4 South and they'll get a room ready for us.   I have a standing order for antibiotics if my temp goes up, compliments of the infectious disease doc. This sucks, but so it goes.

    I need platelets, so maybe they'll drip 'em in tonight instead of tomorrow, but oddly I have plenty of red blood cells (11.1). And the whites, well, we just wait for those buggers (0.4) to recover.

    We'll try to send an update tomorrow.

Love,
Carol

Hairy Legs & Hospital Hash (11/6/03)

Hi, everyone,

    I am now comfortably (relatively speaking) in M. Hospital 4 South #8, ###-####. Mostly have had to deal with a high fever & associated annoyances (chills, cured by a blast of demerol), but definitely NOT septic, THANK GOD!! Today got a baggy of platelets (WBC 0.2, Hgb 9.5, Plt 7,000) and the routine for the next week or so will be watching the nursing staff hang assorted antibiotics while I twiddle my thumbs until the immune system kicks in again.

    The quilt was a HUGE comfort to cuddle under when I was cold, like taking a giant hug from the [bakery] gang with me to the hospital. I'm feeling pretty OK now, mostly just tired from not sleeping much and the benedryl they give before you get platelets. I'm hoping to have a pretty boring week, medical-wise, but company is definitely welcome, even if I sleep and you just sit there in a chair and pat my fuzzy head.

    OH yeah, and my legs are getting hairy (sort of), and the hospital food is always hairy (well, metaphorically speaking).

Love,
Carol

Home Tomorrow/Done W/Chemo (Honest!) (11/16/03)

Hi, everyone,

GOING HOME:    Dr. D says he's going to stop the IV antibiotic (Zosyn) and switch me to an oral one (Levaquin). Better yet, I get to go home tomorrow, assuming my counts continue to rise (I'm almost out of the neutropenia woods -- 1,100 whites of which 418 are the good guys, 500 is the cut mark). Bleh! Bleh! Almost two weeks in Club Med is plenty, it's not the recommended method for losing 10 pounds, believe me. I'll continue a bunch of meds when I go home, including the IV anti-fungal for a few weeks.

NO MORE CHEMO:    And, he says I'm really, truly done with chemo. The oncology team discussed my case last week and they're unanymous (ack, chemo brain spelling) for not having another round of chemo. I'm not surprised -- two rounds of sepsis, and each round of chemo my counts take longer and longer to recover, so it's time to quit. But I suspect there's a diminishing return with each round of chemo past # X, probably round 3. Dr. D called me a "trooper" and laughed when I bugged him for a certificate of completion (hey, a friend of mine got one when she finished radiation, so why not when you finish chemo??)

NOW WHAT:    No bone marrow biopsy, either. It only gives about a two week or so lead on what shows up in the blood if the leukemia kicks off again, and doesn't change the outcome or treatment he says. So, I need to figure out what life as a cancer survivor looks like. The cancer could return in two months, two years, tomorrow, or never, such is the uncertainty of leukemia. I have client/colleagues chomping at the bit for me to get back to work, so once I get resettled in at home I'll be figuring out how many hours or whatever I have oomph for working. The chemo fog is fading, but I know I'm still somewhat spastic emotionally and don't want to overpromise getting stuff done.

Enough for now. Love & hugs to you all -- the hospital staff is quite impressed with the support you guys have been provided, so give yourself a pat on the back :)

Carol

Happy T-Day/Still On House Arrest (11/26/03)

Happy Thanksgiving!

We're going to have a quiet turkey day at the homefront (and yes, a REAL turkey, not tofurky) tomorrow. I've been home from the hospital now a week and my counts are still obnoxiously low on the white front (1.3 & < 500 neuts) so I'm on house arrest until they get out of the pits. But they're doing their job of keeping me healthy, so I can't complain. It could be worse -- the doc could have insisted I stay in the hospital until my neutrophil count was over 500, and who knows how long that will be. (The reds are OK, Hg - 9.8, and the platelets are starting to climb - 76 - but not enough to start working on any stained glass projects yet.)

It's lovely being home. We (Carl mostly) rearranged the living room, have been busy getting caught up on domestic affairs (READ: clean, pay bills, filing), finished sleeve #1 of Carl's Norwegian sweater I'm knitting, reading dumb science fiction, watching the snow fall, listening to Muffin snore on the couch (or is that Carl?) (Just kidding!) Hope you all have a nice holiday!

Love,
Carol

We Now Return To ... (12/1/03)

... your previously scheduled e-mail program.

Hi, all,
    I'll be sending probably only one more medi-spam and then returning to the usual e-mail routine, if there ever was one, so no news means no news. As of today, I FINALLY! have enough neuts to leave the house, so Carl and I are off to the library, Taste of Scandinavia, and grocery shopping. After four weeks (2 in the hospital, 2 at home) of being cooped up (not counting short walks outside) I'm thrilled to be liberated.

    Dr. D, my oncologist, says the Hickman will come out when my counts normalize, so I'm guessing that's when I see him early January. Between now and then I'll have a few blood tests to make sure the cells are indeed heading up. They're also going to look at the cells under a microscope to make sure things look OK. After that, I'm not sure how often I'll be going in for checkups.

    So, I'll be busy trying to cram as much life as I can into what I've got left between now and a relapse, which may be next month up to a yearish from now. Then it's back to the hospital for more chemo and most likely a transplant (yuck, yuck!). Muffin has her head perched on the chair, so it must be time to go for a walk.

Love,
Carol

So far, so good - Hickman comes out next week (1/5/2004)

Hi, everyone!

    Well, so far, so good on the medical front. My whites are about 2/3rds of normal, neither Carl nor myself has caught a cold this winter, and better still, the pathology report showed NO sign of the leukemia! I'm scheduled to have the Hickman catheter, my constant tubey companion since June 11 (but who's counting?) next Tuesday at 11. I'll finally be free of having to visit the clinic twice a week to have the bandage changed. We meet with Dr. D on Monday and will find out how often I'll need blood tests -- it's been once a week now, so I'm hoping that drops to every other week soon since the counts have been so stable lately (the reds and platelets have been in the normal range for awhile now).

    The holidays were low-key and fattening -- we've been staying close to home except for Trotter's outtings and occasional jaunts elsewhere in order to avoid the plague. Carl has even taken to sitting in a different lobby when I go to the clinic in order to not get coughed on by fellow patients. This week I start working my shift (2x/month) again at the food coop, which I love dearly -- the people are funny and I enjoy playing with food, kind of pseudo-gardening in the winter. Thursday is my first class at Northern Clay Center, where I'm taking Wheel 101; it's a great deal, they give you 25 pounds of clay to play with, the 3-hour weekly class, plus all the time you want to come and throw pots in-between. So, life is returning to a new normal of sorts.

    PS -- if you've missed any of the previous postings, they're all on my web page now: http://www.tc.umn.edu/~syzygy/CA_AML_Pages.html gets you to the main page and http://www.tc.umn.edu/~syzygy/CA_AML_Emails.html    is the Best of "Spam" page in date order. It was pretty therapeutic putting it together, seeing the last 6-7 months in one spot.

Love,
Carol
NOTE:  These pages have moved -- the main page, Carol's AML Pages, are now at www.visi.com/~chaugan/carol/CA_AML_Pages.html and these letters are at www.visi.com/~chaugan/carol/CA_AML_Emails_Frame.html.

Tubey No More! (1/13/04)

Hi, gang!

    Just a short note to say I am now tubey no more -- the Hickman came out this morning. The surgeon had to do quite a bit of scraping (uck) to free the cuff from me, but once that was done, a few stitches, super-glue, and two big clear band-aids and in three days I can finally have a real shower. If I'm really brave, I'll post before and after shots on my web site of what the beastie looks like.

    We met with Dr. D yesterday. I don't have to see him again for a month, and don't have another blood test for TWO WEEKS! I haven't been away from the hospital or clinic for more than a couple days for seven months, so this is quite a milestone.

    I'm pooped. The doc didn't give me any of the good drugs (darn) before yanking out the tubes, but regardless, after all the excitement even the celebratorial mocha at Caribou isn't waking me up. It's so weird to feel like all of my body is finally mine again, and not have a square on my chest labeled Property of Methodist Hospital and Park-Nicollet Clinic.

    We also stopped by 4 South -- L (secretary) and V (nurse) gave me a big hug, plus got to say hi to D (nurse) as well. Dropped off a holiday/thank you card for them.

TTYL, love
Carol

Updated May 2, 2004 / CA_AML_Emails.html / e-mail comments to Carol Albright: calbright@visi.com