Carol's AML Pages
Table of Contents
Updated August 7, 2004 / CA_AML_Pages.html / e-mail comments to Carol Albright:  calbright@visi.com

Introduction

How I Got Here:
    In early June '03, I felt like I was coming down with a bug.  First indigestion and mild nausea on Monday and Tuesday, then fatigue, headache, swollen neck glands, a low-grade fever, bleeding gums when I brushed my teeth.  By Sunday I couldn't walk up the hill by our boat without stopping to catch my breath.  Called the doctor's office Monday and insisted I be seen that day, thinking I was having a repeat of a sinus infection from May.  Hmm, mmm, says Dr. S, as I ran down the list of odd symptoms, most which weren't very exciting by themselves, until I got to the bleeding gums.  His nurse took a blook sample, and off I went.

    Meanwhile, Muffin, our Golden Retriever, was at the vet Tuesday 6/10/03 for removal of a cancerous-looking lump.  Instead of the vet calling to say "pick up your pooch", Dr. S called that afternoon, sounding pretty shook up.  "Your white counts, which are supposed to be 5 - 10,000, are 150,000.  And your hemoglobin is really low, like 7.5 instead of 12.  And your platelets .... How soon can you pack a toothbrush and be at the hospital?"

    The diagnosis is Acute Myelogenous Leukemia, or AML for short.  Since then, I've had four rounds of chemotherapy (one induction, three consolidation), lost my hair, two bouts of E Coli sepsis, a few other mystery fevers, and have spent, umm, 60+ days in the hospital in the advanced cancer unit.  I've lost count.  But the good news I'm in remission and done with treatment for now.  5/1/2004 Update:  I relapsed in early March, '04 and am scheduled to have a cord blood stem cell transplant.

About These Pages:
    These pages are an assortment of my experiences and advice I've collected to share with other patients and caregivers.  Family, friends and colleagues may find parts interesting from a vicarious angle, what is it like to experience a life-threatening disease?  Some parts definitely are redundant with what you may find on other web-sites, but part of creating these pages are my attempt to digest the last 6 months, and I encourage other cancer-survivors to do likewise. 

    One of the most discouraging elements early in my journey was difficulty finding anything printed or on-line that wasn't overly gloomy or ultra-technical to read.  Support groups in town only met monthly, and, wouldn't ya know it, tended to overlap with when I was either A) in the hospital, or B) home recovering with low white counts.  My hope is to point you, dear survivor, towards sources of  support as I either find them myself, or fumble over something that works for me.  Everyone's experience is different, respect yours.  If some idea doesn't flip your lid, stick it on the back burner and try something else.

[Back to Table of Contents]   Updated 5/2/04

Online Support Groups

    Here are three e-mail discussion groups you might find useful, provided by the Association of Cancer Online  Resources (ACOR.ORG), the links below takes you to the page where you can sign up for the list.  Once you are subscribed to a list, you can also read the archives of previous messages.  The service is free, as is access to resources on acor.org.

    One caution with lists, especially BMT-TALK I noticed, is not to scare yourself silly when you first sign up.  People tend to send messages when things are rough -- once people are done with treatment and things are going well, there's little incentive to send missives ala "things are fine, nothing new today" other than at milestone dates.  So if you get a rash of messages about members with ghastly side effects, realize this may NOT necessarily happen to you -- it's partly a quirk of lists that you hear more about problems than successes.

    I subscribe to the AML Acute Myelogenous Leukemia  e-mail discussion list.  The group includes people recently diagnosed through long-term survivors, as well as caregivers, friends and family.  The list generates anywhere from 2 to 10 messages a day.  Postings include questions about treatment, symptoms, dealing with hospitals and physicians, how to keep loved ones up-to-date, asking for support, along with updates on people's condition, both good and sad.  I highly recommend signing up, and there's no such thing as a dumb question or a weird feeling -- chances are somebody else on the list has been there, too.

    BMT-TALK Bone Marrow Transplant Online Communication Forum) is a larger list as transplants can be used for a wide array of cancers, not just AML.  I lurked (posted only two messages, then just read) for several months as it was very educational, then unsubscribed (I didn't have a transplant).

    HEM-ONC Hematological Malignancies Support List , the third list, I suspect covers a wide range of illnesses, so I've never tried it. 

[Back to Table of Contents]   Posted 12/13/2003

What To Bring To The Hospital    

    In general, anything that brightens up your room, makes it more homelike and cozy, and distracts you from being bored or anxious is a big plus.  Do check with your nurse in case the unit you're on has any funny restrictions, but here are a few things I found helpful:
[Back to Table of Contents]   Updated 4/13/2004

Hospital Life

    Hospital life is stressful.  Here you are, plunked into a beige-on-beige room, away from home with a scary diagnosis eating blecky food with a revolving door of staff wandering in at all hours.  It sucks, it really does.  I've been scratching my now-hairier head, trying to think of what helped get me through.  If I look back on my hospital life in small pieces, I can really, truly only think of a couple episodes that were awful.  The rest was boring at worst and a life-changing experience at best.  The common theme of what helped, for me, seemed to be gaining some sense of control over my day-to-day life, on the one hand, while letting go of stressing out over the big, unfathomable stuff.  If you or a loved one are in the hospital, flip through these sections for ideas, or at least to commiserate with a fellow AML survivor.

Juggling Doctors Who?

    If you don't like the answer you get from Doctor A, wait a week, because Dr. B will be on hospital rounds then.  This lesson was difficult to learn during the long first month I was in the hospital for induction chemotherapy.  Anytime you are in the hospital for more than a few days, or for that matter, have an illness that requires care over many months, you're bound to need to learn how to juggle the Doctors Who.

    Here's my string of events -- I met "my" oncologist, Dr. D, for only a brief  session the evening I was admitted, and he became my onc, I learned later, because he was the doctor from the main cancer clinic on rounds that day.  And I wound up at Hospital M, way over in St. Louis Park (we're in St. Paul) because my dear family doc, Dr. S, had admitting privileges there.  That was Tuesday.  Now Wednesday another oncologist started his rotation for the next week, followed by a different doctor.  And another.  And another.  By the end of that first month, I had met with six of the seven (?) oncologists from the cancer group practice.

    The good new is I was able to pick many brains for information, and was comforted by the fact so many bright minds were watching over me.  I also wanted to just CLUB them OVER THE HEAD in frustration!  Example #1:  Dr. A says that I should NOT receive Neupogen, a drug which helps the neutraphils recover, because it might also kick off the leukemia again.  Meanwhile, Dr. B, a board certified oncologist/hematologist says the next day that I WILL get Neupogen, and looks at me like I'm confused.  Example #2:  Dr. C says I'll be home recovering for 3-4 weeks prior to starting the first round of consolidation chemotherapy.  Dr. F, says no, more like 1-2 weeks, because you don't want to give the cells a chance to start growing.  And finally, Example #3:  Drs. B and, uh, E? say no more chemo after round 2, to me while I'm sick in the hospital with sepsis.  And my Dr. D says cheerfully to me at our next appointment, Let's get you scheduled for your 3rd round of chemo. 

    Here's what I found finally helped me:
[Back to Table of Contents]   Updated 12/28/2003

Boiled Longer For Your Protection

    My favorite cartoon on the fridge, a Real Life Adventures, shows a doctor and nurse racing down the hall, she's saying "Doctor! Come quick!  The patient in two-twelve just swallowed his lunch!" with the caption, Nine out of 10 doctors recommend against consuming hospital food.  It's a cute cartoon, but meal time frequently was tortuous for me, and I know it's not much fun for anybody on chemo.  I lost weight every trip to the hospital, and it was as much from diet shock as from feeling crummy.  Losing control over meal times, over what to eat and with whom is a real blow.  The novelty of breakfast-in-bed wears off quickly.

    Here's a few coping mechanisms I picked up in my 77 + 35-odd days at Hospital M:

1) Ask to talk to the dietician
2) Insist on selecting your own entrees

    These three go hand-in-hand.  Most hospital have pre-set menus for the masses, as opposed to a REAL menu, where you get to choose from a wide variety of entrees and side dishes.  Hospital M at least lets people who are in for a long time choose from a few limited entree options, which helped somewhat.  As a semi-vegetarian, I went into food shock at the typical dinner of Meat Slab, Potatoes, and Autoclaved Frozen Vegi.  For the first week in the hospital, I also was on the White Diet -- Chicken Slab, Mashed Potatoes, Yellow Beans, Vanilla Pudding, Milk.  I learned from whimpering to the dietician that there is more than one kind of menu, plus there may even be secret entrees that aren't on any menu.  The White Diet is really the mucositis diet they give you if you have mouth sores, and since I didn't have any I could go on the Regular diet, which had more variety.  The dietician also said they could provide vegi burgers instead of the regular entree, or  noodles & vegis for dinner.  Not a perfect alternative, but better than nothing.  Bug your dietician for alternative menus or options if you're not finding anything that works for you. 

3) Vegetarians ... prepare for food shock but be persistent

    Continuing on the previous theme ... hospitals, at least Chez Beige, may not even recognize what a vegitarian diet is, much less vegan.  Bug more than one dietician if you have to.  After a few trips here I finally extracted a longer list of vegetarian or low meat options, some which were actually quite tasty (the first 5 - 10 times they appeared, then I fed them to my hubby).  Mind you, part of the problem is the list of alternatives may be short, so any entree may be grim after too long.  But here's what I found wasn't too bad:
  • Vegi Burger:  I think these are actually Boca Burgers, or some relative.  The ones served here can be pretty salty, which can be annoying depending on if the chemo has alterred your taste any (I found salty things tasted weird for a while)
  • Turkey Pasta Parmesan:  Basically noodles with mushroom soup and mushroom slices.  You can easily pick out the meat bits (also very salty).
  • Tofu Noodles:  Really raviolli stuffed with tofu "cheese" and REAL marinara sauce, probably a freezer entree. A winner!
  • Mac & Cheese:  Ignoring the fluorescent orange color, if you throw on enough catsup packets it works for a while
  • Cheese Stuffed tubey noodles with marinara sauce:  Ok, that's not what they're really called, but I'm having a bit of chemo brain and can't remember the word.  Manicotti?  Also very good.
  • Rice Bowl:  Approach with caution.  The rice is probably good, but heaven only knows what the vegetables are on top.  Once in a blue moon Chez Beige gets these delightly fresh long green & yellow beans that are cooked to perfection, but usually what shows up are the overcooked frozen variety
    4) One Bite Club

    I frequently wasn't up to eating much, especially during induction.  A few bites are a laudable achievement when you're really weak or green.  I made the mistake of letting the tray sit there, staring at me, thinking I could force down a few more mouthfuls later.  Well, later comes and here's another tray.  A better approach I'm finding is to take a few bites of whatever I can muster, plus drink the milk and juice, then pat myself on the back for at least trying.  Then away goes the tray! 

5)  Boost & Snacks

    Find a supplement drink that's reasonably palatable and try to get one or two down a day.  For example, a chocolate Boost I discovered has about 25-30% of the vitamins and a bunch of calories in a pretty small volume -- throw one of those over ice and they're not half bad.  4 South, my hospital unit, had a kitchen where we could get juice and snacks, so if I was hungry I could at least find crackers with jam or peanut butter to nibble on.  I figured between the Boost, One Bite Club and a few snacks I wouldn't lose too much weight.  One bit of caution -- the fruity versions I found gave me the trots -- I don't know if it's the high sugar content or another ingredient, so snack around to find one that works for you.

6)  Food from Home

    This sounds dumb, but I had the hardest time even thinking of what would taste good when I was in the hospital.  Friends kept asking me what they could cook and bring and I was clueless.  It was only after my husband brought in some Chinese fast-food take out that I realized how numb my taste buds had become.  I tried to aim for high nutrient density snacks, like nuts, that were easy for my hubby to buy and bring, along with an occasional meal from home that he could cook easily, like spaghetti and plain red sauce (the red sauce at the hospital had never touched a tomato).  If you're having better luck figuring out what to eat, and have cooks ready to bring in food or take-out, go for it.  It helps to have something to look forward to each day.

7)  Nausea & Eating

    Don't fight it -- if you're feeling green, ask the nurse for something to take the edge off the nausea.  I found that even a small dose of IV Ativan (lorezepam) was enough to make eating possible but wasn't so strong as to conk me out.  The pill version of Ativan helped when I was out of the hospital, but sometimes wasn't as fast acting nor as strong -- for me -- to help.  I was amazed at how much more I could eat when just that slightly jiggly gut feeling went away. 

8) Deli Delights & Take-Out Nirvana

    A bonanza I tripped on this round through Chez Beige is the fabulous deli at a nearby grocery coop, a LeAnn Chin's chinese takeout at a grocery store with another giant deli, and a French bakery with more take-out goodies.  If you can get a day pass  and pick out goodies yourself, so much the better.  Otherwise, send a friend over to pick up a few small containers of a variety of foods for you to try.  Potato salad, steamed vegi salads or even fresh salads (assuming you're not on a neutropenic diet that doesn't allow fresh foods), burritos, hummous dips with pita bread, stir fries or whatever (I'm semi-vegitarian which is a challenge to hospital food services).  Sometimes your appetite is dead because the food is so blah and boring, and I was astounded at how hungry I really was once I got something appealing in front of me.  (Posted 4/14/04)

9) Don't Shoot the Messenger (Although It's Tempting)

    Oh, lordy, the next dietician who tells me when I complain about the lack of vegetarian options on the menu, Well, most people are only here for three or four days ... I am going to start shrieking.  Well, excuuuuse me!  I didn't choose to be here for 100+ days total, and that's not a terribly empathetic comment to make, and it's even a worse excuse.  What, people here for shorter times are too sick to eat ANYWAY!!!  Chez Beige started this bizarre program a month+ ago where they send a young dietary aide to every room after every meal and ask how your meal is and is there anything they can do?  This is Minnesota, the land of the passively-aggressive polite -- you say, No, Dear, it's Just Fine, and then feel guilty about complaining because you didn't speak up.  Not that the aide can do anything anyway, other than toss your plate in the nuke if it's cold, but then I can do that myself.  After a week of getting bugged three times a day, I finally snarled politely at one of the youngsters and said to please quit asking (hey, that's three fewer intrusions a day!). 

    I suspect most hospitals just don't grok what it's like to be incarcerated for much more than a week, certainly not the food service department.  At some point, I'll figure out what to write in a letter to the head of the department with some constructive ideas, but I figure growling at the revolving door of dieticians who drop off Menu Week #3 for me to circle what entree I want (if it's Tuesday, it's Turkey Pasta "Parmesan") isn't terribly constructive.  Now, if they counted me as a bed-day and not a person, maybe I'd have more clout.  Hmmmm....  (Posted 4/14/04)

[Back to Table of Contents]   Updated 4/18/04

Counting Sheep, or, Sleep, Privacy and Reclaiming Your Space

    Next trip to the hospital, if you're bored, count how many times people pop in and out of your room.  Even make a check sheet by name or category if you're feeling compulsive:  Day Nurse Nancy: ||||||, Day Aide Bob: ||||||||||, Dietician, Oncologist du Jour, Guy checking to see if you're on oxygen or not: ||.  You get the idea.  I never actually did this, but figure it can come to 24 or more times, once an hour.  Blech!
    When I felt really awful, the distraction could be welcome, plus knowing the nursing angels were watching over me was a comfort.  When I was just twiddling my thumbs, waiting for my counts to recover, it drove me batty!  All this popping made it incredibly difficult to get decent sleep, which made me even crazier.  Be brave and bold and creative in reclaiming your personal space!
  • Signage:  Ask your nurse to stick a DANGER!  KEEP OUT!  Crabby Patient Inside sign on your door.  Sometimes the sign just said stay out from 3:00 - 4:45, or don't come in without talking to the nurse first.  Or "don't deliver the food tray until the patient asks for it" or not until 8 a.m. or whatever.  If visitors are overwhelming, add a sign for that, like "please talk to the nurse before visiting Mom" or "Limit your visit to 15 minutes please". 
  • Unplug the Phone:  My phone had Loud and Not So Loud but no OFF setting on the ringer, so I had to literally unplug the beast if I wanted to take a nap and not be jangled awake.  An answering machine is very handy, also to catch calls when you're in the loo.  (Check with your nurse before getting an answering machine -- my hubby says there are different kinds of phone systems and some digital phone systems might not be compatible.)  But even then, if it's making noise that's waking you up, unplug it!  Just tell you're friends and family, or have your caregiver tell them, they may just get a ringing phone sometimes because you're resting.
  • Watering Can Refills and Other Liquid Management:  Hey, if your water pitcher is empty, buzz the aide and ask for a refill.  For pity sakes, the nursing aide doesn't need to crash into your room in the middle of the night just to stuff it full of crushed ice and a cup of water because it's gotten lukewarm.  How much do you drink when you're asleep anyway?  (A pet peeve of mine, can you tell?)  I am a light sleeper, so every time the door opened I tended to wake up.  Same with other IO management (input-output, aka keeping track of how much you drink & pee).  Unless you've been having troubles with liquid balance or are feeling pretty crummy, tell the nurse and the aide you'll just buzz them when the hat in the bathroom needs emptying.  In fact, if you're virtuous about drinking lots and there's plenty going out, ask if you can be taken off of I/O.  There!  You've just cut out about 3 times somebody needs to disturb your slumber at night, and even more during the daytime. 
[Back to Table of Contents]   Updated 4/18/2004
Day Passes & Deli Food

    Escape!  Escape!  If you don't have an active infection, aren't in the middle of chemotherapy, and basically are cooped up in the hospital waiting for your counts to recover, beg your oncologist for a day pass.  Tell 'em it'll prevent the need for a psych consult, you'll wear your mask, and you'll end up getting more exercise this way.

    During consolidations, I could sign out of the hospital for a few hours on the days I wasn't receiving chemo, and for at least half of my stay during this second induction (35 days) I've also been able to sneak out with family and friends for a spell each day.  My energy has been pretty good (relatively speaking) plus I've been on several anti-this or that's (Cancidas IV for a fungal lung infection, Levaquin or Zosyn for bacteria) that are providing a pseudo-immune system this stay.  So the doc said I could go out -- with a mask on and not in very crowded places, mind you -- for a few hours each day.

    My god, what a sanity saver!  I checked in on March 12, 2004 and it's now April 14 as I write this.  I adore spring, so being able to poke my nose outside with a loved one and listen to the robins chirp or the gulls at Lake Harriet mew, watch the buds unfold from from the trees, the yellow blossoms emerge from forsythias or crocus pop up in lawns has been divine.  We live quite a ways from the hospital, so haven't gone home, since I tend to poop out within and hour or two.

    We have two favorite hang-outs -- a Dunn Brother's coffee shop that's in a yuppy little neighborhood with cute stores to peek into (Linden Hills in Minneapolis), across from a grocery coop with a fab deli (Linden Hills Coop), plus a French bakery (Turtle Bread Company) with yummy soups, bread, and treats, etc.  Notice a repeating theme -- FOOD, FOOD, and COLOR.  The first time we wandered in to the coop I thought I died and gone to heaven.  Red peppers, dark green avocados, yellow bananas, rows of apples and pears, plus the place just had that lightly fruity smell.

    Then I found the Coop's deli.  Like I said, I've had the hardest time figuring out what I was hungry for, and a case full of old-fashioned potato salad, overstuffed vegetarian burritos, carrot cake, szechuan tofu, tabouli got the taste buds jump started.  (Did I mention that I'm semi-vegetarian, a diet hospitals seem to not understand very well??)   Voila!  Since then I've been living on take out from a few places -- pick a few dishes that look like they'd taste good, buy a small container for starters and away you go.  Some things taste funny at first until the chemo wears off, but at least YOU get to choose something.

    A few pointers:
  •  Coffee shops can be a mixed bag as far as what time to go.  Sometimes they're pretty empty and you can find a spot far enough from anybody to take your mask off long enough to sip your small decaf mocha with whipped cream.  Other days, the moms descend with their virus factories in tow, so at that point get your drink to go and skeedaddle.  Lately it's been warm enough to sit at a sidewalk table and toast my bald head in the sun for a few minutes, otherwise we just bundle up and sip our drinks while window shopping for a few minutes.  Some places, like Dunn's, even have tasty sandwiches (tuna salad on wheat, believe it or not).
  • Bring a bottle of Purell or some other hand sanitizer.  That way you can disinfect your hands at the table and not have to wander through the rest room to wash.
  •  Avoid any place during peak times, and I usually have my brother take my grub through the grocery check out while I hide outside away from people to cut down on exposure to germs. 
[Back to Table of Contents]   Updated 4/15/04

Neutropenia & Avoiding Infections

    Your blood includes several different kinds of white blood cells.  One of the most important infection fighters is the neutrophil, which normally makes up over 50% of your white blood count or WBC for short.  That is, if you counted up how many white blood cells were swimming around in a sample of your blood, over half of them should be neutrophils.  When your WBC counts as a result of chemotherapy or illness, you doctor will likely order a differential, where the laboratory literally counts how many of what type of white blood cell you have.  Sometimes a machine does the counting, but when your counts get really low, a lab tech peers into a microscope to count them up.

    When your Absolute Neutrophil Count, or ANC, drops below 500, you have neutropenia.  When you are neutropenic, you need to be extra careful to protect yourself from an infection.  Your doctor and/or nurse should give you some guidance on what to do, but here are a few quick pointers:
                            1300 * (.29 + .04) = 1300 * (.33) = 429.  At 429, you'd still be neutropenic. 
                (From a course targeted at oncology nurses, What is Neutropenia?)

   Using Neupogen or Neulasta:  To help speed up production of neutrophils, I was given Neupogen, a granulocyte colony-stimulating factor (G-CSF).  Neupogen is given once a day starting approximately 24 hours after the last dose of induction chemotherapy via injection.  The needles are teensy, and since they're given in a fatty spot (read: middle-aged woman's tummy) they didn't hurt.  Well, most of the time -- the needle doesn't hurt, but I'm finding sometimes the medication smarts, but that goes away.  (If you're platelets are really low, like 25,000 & under, put some pressure on the injection spot for awhile to avoid developing a bruise.)  The shots continue until the ANC counts increases past a certain level.  Neulasta is a longer-acting version of G-CSF; my oncologist used it following each round of consolidation chemotherapy.  It's given only once; I got my shot on the day I went home from chemo.  If you want to read the techy version, here's the manufacturer's info sheets on Neupogen and on Neulasta.

    Fun Fact:  One shot of Neulasta goes for about $6,400, yowza!  But then consider what a week in Advanced Care goes for.  And the Neupogen I'm giving myself at home for a week cost me $315 (that's 25% of the $1,265 retail price, TG for insurance).

    Aches & Pains Due To Low WBC:  I noticed that when my counts were low, I had more aches (like my teeth were more sensitive and hurt; my toosh hurt from sitting too long).  I could tell my counts were going up because these pains started backing off or even stopping.  If you're in the hospital, complain to your nurse if you're uncomfortable -- soaking in a warm tub helps with aches, for example.  I got special toothpaste from my dentist to help with my teeth.  Whatever is bugging you, there may be something to help it be less aggravating until your counts perk up.

[Back to Table of Contents]   Updated 4/18/04

Treatment Tidbits

    The time from when a very pleasant Dr. D told my hubby and myself that I have acute m-something-or-other leukemia until I was trundled off into my own private Room #2 in the Advanced Cancer Unit and started treatment was measured in hours, maybe minutes even.  Not much time to discuss treatment alternatives, nor even digest the fact that I had Cancer.  What follows is a description of the treatment I received with links to both medical-ese and survivor-readable materials.  For some more technical topics (ie cytogenetics), the links are to medical journal articles or texts as the stuff targeted at patients tends to be one-liners buried in brochures.

    For medications, I have included links to MEDLINEplus, which offers information sheets published by two different sources, MedMaster™, a product of the American Society of Health-System Pharmacists (ASHP), and the USP DI® Advice for the Patient®, from the United States Pharmacopeia (USP).  I've included both where possible.  The American Cancer Society's Consumer's Guide to Cancer Drugs  is very helpful -- click on the "Guide to Drug" link on the left-hand side of the page which will bring up the drug guide.  CancerBACUP -- "Europe's leading cancer information service" -- also has very readable drug sheets.  I'd read the sheets from either the ACS or CancerBACUP first.

What kind of leukemia is it?

    AML can be typed into different categories which are helpful in deciding how to treat the disease as well as determine the prognosis.  In my case, I had so many white blood cells running through my veins that the doctor did not order a bone marrow biopsy when I was admitted to the hospital.  Instead, they were able to roughly diagnose my type (M2 or M4) by looking at a blood sample.

Immediate Treatment

    Within hours I was given hydroxyurea, an anti-metabolite chemotherapy drug given as a pill (MEDLINEplus,
American Cancer Society, CancerBACUP) along with allopurinol, (American Cancer Society, MEDLINEplus-MedMaster, MEDLINEplus-USP DI,  ) which protects the kidneys from being damaged by preventing an enzyme from producing uric acid as the leukemia cells break down.  Because I had extraordinarily high white blood counts (175,000, or hyperleukocytosis) I needed to have as many white blood cells removed as possibly immediately.  A doctor installed a special line in a large blood vessel in my leg and I was connected to a machine which pulled out my blood, removed the white cells using a centrafuge, and returned the rest to me, a process called leukapheresis.  Within a few hours my counts dropped to about 75,000; removing cells meant fewer cells for my kidneys to deal with and less chance of  tumor lysis syndrome, a complication that can arise as leukemia cells break down from the chemotherapy.

Remission Induction Chemotherapy

    The first phase of chemotherapy is referred to as "remission induction", or induction for short, because the goal is to beat back the cancer to a point where it is no longer causing problems, ie remission.  The next morning, prior to starting chemotherapy, I was given a complete physicial, including an ultrasound of my heart.  They installed a central venous line, a Hickman catheter (CancerBACUP: Managing a Central Line) under local anaesthetic and some mighty fine drugs (I could still hear the retro radio station blaring and people talking but hey, life was DANDY! from under the blue drape over my head).

    The main course, started later that day, was heavy-duty traditional chemo, consisting of three days of  Idarubicin (American Cancer Society, MedlinePlus) combined with a total of seven days of Ara-C (cytarabine, American Cancer Society, CancerBACUP).  Both bone marrow biopsies showed no sign of the leukemia, so I was thankfully in remission.  In addition, my marrow showed no obvious changes in its genetic structure, referred to as normal cytogenetics; some changes are considered low risk, others high risk, and my normal structure is considered intermediate risk or prognosis.

Consolidation Chemotherapy

    Induction kills off most of the cancer cells, but not all of them. Consolidation chemotherapy aims to kill off as many of the remaining bad guys as possible.  I was given "high dose" Ara-C (cytarabine), 3 grams per meter**2, for a total of two cycles, and at 2 gms/m(2) for an additional cycle (that's read as "grams per meter squared", which is a weird sounding dimensional unit).  This is a very standard treatment protocol currently -- you can read descriptions of chemotherapy at American Cancer Society.

    I had to drop to the lower dose due to signs of neurological poisoning.  After my second cycle I had been home, crashed out on the couch, and when I tried to get up felt like I had been chugging beers.  I couldn't walk a straight line, which is one of the neuro tests the nurses do prior to giving each dose of Ara-C.  I called my oncologist's nurse; at that point, there was nothing to do other than watch and wait, and the balance problem stopped by the next morning.  Fortunately I remembered to remind my oncologist at our meeting prior to starting the third round of chemo, and he decided to lower the dosage. 

    Moral of Story:  Keep good notes of unusual (or even usual!) symptoms and remember to tell your doctor about them.  And remember, just because I had neuro problems does NOT mean you or your loved one will!

Neutropenia Nightmares

    Neutropenia is no fun.  When your white blood cell counts crash following chemotherapy and the germ fighting neutrophils sink below 0.5 (that's 500 cells per square something-or-other, nobody ever talks about the units), your body is very vulnerable to infection.  MY body was very vulnerable to infection, primarily from my own, home-grown bugs. 

    I came down with fevers of unknown origin two (three?) times following induction.  I also wound up back in the hospital following all three consolidation rounds with fevers, usually within 24-48 hours of my ANC hitting 400.  The first round was a mystery bug, but the next two were E. Coli sepsis, a very nasty infection in the blood.

      Please realize that just because I had lots of infections does NOT MEAN you necessarily will.  I am writing this partly for my own benefit, to realize that even though things were grim I bounced back.  This is also a cautionary tale -- if you start running a fever (your doctor will tell you what they consider to be a fever, somewhere around 100.5 is typical) DON'T IGNORE IT!  Call your doctor pronto, even if it's 2 a.m.  That's their job, you are not bothering anybody.

    I wound up a human petri dish with that first round of sepsis.  I had been getting a blood transfusion in the hospital wing around the corner from my usual 4 South home, when I noticed I was feeling chilled.  My temperature had been 99.3ish right after I had swallowed some tylenol they always give for premedication.  Oops.  I had this sixth sense that the medication could mask an infection, and boy, was I right.  By the time the blood finished dripping and the tylenol wore off my temp was 103 and climbing.  I was incoherent by the time they moved me down the hall into the advanced care unit.  My temp maxed out at 105.1, and at one point I remember stopping thrashing and moaning long enough to apologize to my dear oncologist for being such a wimp (!).  My blood pressure crashed to 70 over something, so they maxed out the IV pump to 999 mls per hour of saline, plus ___ to boost it back up, which also required being on a heart monitor.  I thought I was toast, but in a few hours the shivering, thrashing, moaning misery backed off, and the blood pressure/heart hiccups were fine in a day or so.  But in addition to the e. coli in the blood, my poor lips look like I'd been in a fight (herpes virus, aka cold sores), my gut was upset from all the antibiotics, so one of the unfriendly bacteria took over (Clostridium difficile, a spore-forming bacteria) AND, to round things out, a fungus in my lung.   So I've taken at different times:  Zosyn, vancomycin, Cancidas (caspofungin acetate) for the fungus, acyclovir for the virus, Flagel (for the C. Diff.), and so on.

    The next round of sepsis, following the 3rd round of consolidation, was not nearly as dramatic.  My temp only hit 103.3ish, and I was under the weather for just a couple days.  But the urksome part of each post-consolidation infection is being cooped up in the hospital for 10+ days and eating ... hospital food!

Relapse, Induction Chemo and Umbillical Cord Stem Cell Transplant

    "We have a problem" said my very kind Dr. D on March 11, 2004.  My white blood count was up to 30,000, and the AML was back.  I had hoped for a longer vacation, but so it goes.  My hubby and I went out for Indian food that night, and I checked back into Chez Beige on Friday, March 12.  It's April 6 as I write this, and I have a new Hickman catheter, have gone through another week of induction chemotherapy (Idarubicin and Ara-C), the E Coli and fungus returned, and I'm twiddling my thumbs waiting for my counts to go back up.   Thank God for antibiotics -- the Zosyn and Vancomycin took care of the E Coli, and the Cancidas is keeping the fungus in my lung at bay.
   
    I'm scheduled to go to Fairview/University of Minnesota to start testing before a umbillical cord stem cell transplant on April 12, assuming I have 1,000 neutrophils by then.  Stay tuned!

    4/18/04 Update:  Well, NOW I'm at home -- I didn't get discharged until Friday, 4/16 because my counts were pokey recovering, but that's not too surprising.  People (aka the hospital pharmacist, an oncologist or two or three or ) have said that each time you beat up on the marrow it takes longer to recover, and it took 31 days following the first induction last June.  Wednesday I'm off to see the doctor at the U of M and then the following week I'll probably start all the testing.  I feel well, other than the wimpy legs, the iritis (inflammation of the iris, no correlation to the AML) and the chemo brain.

5/14/04 Update:  Day -4
   I'm entertaining myself at Fairview/Univerversity while the fludaribine drips by taking screen shots of my Hickman Catheter.  The nurse reviewing the slides was most impressed -- it was inserted March 12 at Methodist and she pronounced it well placed, so I didn't need to have it replaced.  You can see the tubing snaking into the heart on the Right side of my chest (x-rays are viewed as if the patient is facing the reader).


8/7/04 Update  Day 3/ Day 81
    Now on a clinical trial using Natural Killer cells and IL2.  More later when my coordination returns.

[Back to Table of Contents]   Updated 8/7/04
Chemo Brain -- It's Not All In Your Head

    Chemo brain, you know, it's that, uh, well.  What was I talking about?

    Yeesh, some of the mental fog I struggle through I know is exhaustion, especially in the hospital when I'm short on sleep.  Sometimes it's emotional overload, a bit of depression, frustration at being cooped up, and the like.  But yesterday my hubby and I were heading off to hang out at a coffee shop, and I completely, totally forgot the existence of a favorite joint where I spent many hours writing a bad science fiction book.  Poof!  Gone!  Once he mentioned White Rock it all came back to me, but not of my own initiative.

    For me, I've had trouble remembering words, finishing sentences when I speak, reading complex material (as opposed to mind candy novels where it doesn't matter if I miss half the words), problem solving, and juggling multiple tasks.  Oddly, I can write (like I'm doing now, directly into the computer) pretty well, but not with pen & paper in my journal.  The words get stuck.  I found these problems went away over time (like a month or two) after I finished my consolidations, but are back in spades with the second induction following my relapse. 

    I need to apply for Social Security Disability Income soon (I'm scheduled for a cord blood transplant in the next few weeks) and my biggest disability (other than the obvious being sick in the hospital) is this fuzzy-headedness.  I tried doing some work for clients while I was in the hospital -- HA!  Problem solving?  Pattern recognition?  Critical skills I need in my line of work (data management for health care research) were sorely, uh, uh, cracking?  No, no!  LACKING!  That was the word!

  YOU ARE NOT CRAZY.  Researchers are finding that chemotherapy can cause cognitive problems.  And it's NOT menopause caused by the chemo.  The Wall Street Journal published an article 4/4/04ish about chemo brain and as I find decent links I'll add them to this section.  I'll also try to find stuff on how to cope -- I know some of the cancer sites have tips, like keeping a TO DO list handy to avoid forgetting tasks. 

[Back to Table of Contents]   Updated 4/18/04

Links

This section was getting out of hand, so this is now alphabetized by organization or web site name (for the minute!).  All of these sites are in English and USA-based organizations or individuals unless otherwise noted.
[Back to Table of Contents]   Updated 3/10/2004

Online Education

[Back to Table of Contents]   Updated  3/9/2004
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