Shifting impatiently from one foot to the other, flipping from hand to hand the ball of string that is supposed to guide my return to sanity once I’ve discovered the identity of the beast that is my illness, I wait in the anteroom of the medical labyrinth for a signal to proceed.
I have decided on a no-drugs policy until the true nature of the beast is known. Put up with the pain and weakness until we know what is going on. That means waiting for treatment, other than natural pain-killers and strengtheners I can devise in my kitchen.
Waiting…up to two weeks to have stool analyzed for cancer. It seems like forever.
I might as well read up on blood cancers. Prepare myself for the famous “battle against cancer.”
Into the labyrinth of hematology strides the brave maiden, hiding the shaking of her legs under a long skirt, with her thin string of knowledge unfurling behind her.
Handwriting on the wall of the first hallway: “Hematological malignancies may derive from either of the two major blood cell lineages: myeloid and lymphoid cell lines. The myeloid cell line normally produces granulocytes, erythrocytes, thrombocytes, macrophages and mast cells; the lymphoid cell line produces B, T, NK and plasma cells. Lymphomas, lymphocytic leukemias, and myeloma are from the lymphoid line, while acute and chronic myelogenous leukemia, myelodysplastic syndromes and myeloproliferative diseases are myeloid in origin.”
Thank you, Wikipedia.
Is this progress? Do I turn left or right? Lymphoid or myeloid?
I think I just learned something. Lymph nodes have not been involved at all so far and white cells haven’t been mentioned, either; so I figure the myelogenous line is more likely to be mine. The chronic and acute forms of those leukemias are affectionately referred to by their initials, CML and AML. The acute type is 8.7% of blood malignancies in the States; there is no percentage noted for CML, which, I suspect, means CML goes undiagnosed until it turns into AML, by which time it’s too late.
On the myeloid wall, for the first time ever, I read about a CML symptom that sounds just like that incident of racing heart and pin-prick rash I had in 1993. The weird all-over rash that even the doctor in our group could not identify.
AML has a little cubicle all its own, thick with red writing on each wall. When I read the description of AML’s prognosis, I can’t help but put my head down on a convenient bench, put there as if the labyrinth makers suspected the effect of the wall’s information on the devastated patient, to have a good cry on my own behalf. AML is almost as bad as pancreatic cancer.
But wait a minute — am I not in the wrong hallway? All these blood cancers have something to do with white blood cells, which, as far as I know, are still doing fine in this body. Moreover, my symptoms really sound more like the side effects of radiation treatment. What’s that big red R on the hallway to my right?
I run over to the R and read frantically. Well, what a relief — I guess the docs won’t be persuading me to try radiation if it is cancer, seeing that my red blood cells are already down to a pitiful few.
Radiation…I just had a whack of radiation. In five weeks I took seven major plane trips, spending at least 35 hours six miles above the Earth’s crust, where I doubtless took in much, much more than the annual max blast of ionizing radiation. Could that have triggered the apparently sudden onset of this attack?
I’d arrived home from Down Under feeling in the pink, spent three strenuous days moving books and refurbishing the library in preparation for a friend’s visit, and then collapsed two days after she arrived.
Was that the climax to a year of feeling poorly? The trigger that catapulted me into my present pathetic state?
I had to get out of here and find the room where I keep shreds of memory about what the body I live in gets up to. I followed my guiding string back to the day Dr. T noticed that my red blood cells had been getting smaller and fewer since last May. Almost a year ago. Had the body really just trundled peaceably along since then, or had there been signs of trouble?
I searched my memory for health problems between then and now.
Foot fungus, virulent. Herpes virus, growling a couple of times.
Threatening toothache in molars which aren’t supposed to ache—I’d fought those all off successfully.
Pain in the kidneys—or was it the adrenals, the little hats on top of the kidneys?
Fullness in the right jaw and neck, which Dr. W. had been unable to palpate but which disappeared once I quit using the cellphone and limited my use of the portable phone.
Then there was that fierce, two-day inflammation which attacked my 14-month-old bone graft and dental implant, until the titanium screw suddenly sprang out of my jaw—when had that happened?
I searched the email archive for the message that had broken the news to my flabbergasted dentist. Sure enough: May.
Something must have been stressing the body around that time, obviously, but what? My longsuffering adrenals, compromised by sixteen years of off-the-chart stress, had been responsible for putting my thyroid into a coma three years earlier. Could they be responsible for still more endocrine disruption, big enough to knock down my red blood supply?
Maybe I should be in the endocrine labyrinth instead of the hematology labyrinth. Maybe there were two applicable labyrinths, each with its own monster at the center. Maybe they are off-center monsters—the body can be wacky like that.
I couldn’t think of a stressor last May. Might as well go back to researching possible causes for low red-blood counts.
This time I ignored the lymphoid and myeloid hallways and found…anemia. I should have guessed there’d be a big room for anemia. Iron-deficiency anemia is already a suspect. For three weeks, twice a day, I’ve been taking bio-available iron with Vitamin C, lysine, and Vitamins A and K in a nice omega-3-rich oil. Can’t wait to see the new ferritin count.
Then there’s pernicious anemia, in which, for some reason, the body doesn’t process Vitamin B12 and/or folic acid. Hmm…. I’d tried some supposed powerful liquid B12 in the last year, with no results. Back in the Nineties, the bad old fibromyalgia days, a B12 shot in the rump had worked wonders, however temporary. Maybe it would be worth another try?
Then there’s aplastic anemia, affecting all the varieties of blood cells. It can be triggered by radiation. There’s another big red R on this wall. Wouldn’t it be nice if that’s all my problem is, even if no one seems to know what to do about it? Wishful thinking, that it could be so simple.
I pass on from the anemia rooms to a little-used room, to judge from the cobwebs across its entrance. Pure red-cell aplasia does capture my attention, because there’s a herpes connection, although this beast coyly conceals which kind of herpes. Moreover, in this beast, erythropoiesis (red-blood-cell making—love that word!) is all screwed up in the kidneys. Aha! A joining tunnel to the endocrine labyrinth!
I wondered how silly it would sound to mention this critter to my GPs.
The next step took me into a considerably more terrifying salon: myelodysplastic syndrome. This one I’d heard of. This beast is huge. It killed my friend Brian Taylor, the poet. I remember his telling me about his weakness, how he fell over backwards into the hospital flower beds after a transfusion, when he was supposed to be feeling better with those nice fresh red blood cells. Then there was my mother, who was never offered a transfusion—“After all, you’re 92. What do you expect?” Her white face as she was told she had perhaps two weeks to live. Leukemia, her doctor had told me earlier on the quiet. This myelo thing will turn into leukemia.
MDS ends up as AML. Oh, great!
I turn and run out of the labyrinth, the walls shouting at me, “Take a look at platelet counts, the white blood cells! Any spleno-hepatomegaly (enlarged spleen and liver)! Radiation exposure! Copper deficiency!”
Gasping as I lean once again safely against the sloping outside wall of the labyrinth, I angrily rewind my guiding string. This scenario is a lot more complex than any health threats in the past. Suddenly memory rushes upon me. Last year was the Year of the Condo from Hell.
Two decades ago, my stress scores bounced around 1,200 points a year on Hans Selye’s stress test (where the you’re-going-to-be-sick-for-sure score is 300). In those bad old days, I found myself at the butt end of some forty lawsuits. It’s a miracle I lived through it all, although I fell very ill with fibromyalgia. Could the Condo from Hell have thrown me back into that condition, or worse?
No wonder I didn’t want to remember the condo fiasco! The situation was so bad, I had to borrow $300 from a friend to pay Hydro. I was supporting my daughter, the funding for my contract with the School District had dried up, and my mother’s condo just wouldn’t sell. The condo council was run by a tyrant who purported to fine me and my daughter, the condo’s owners since my mother’s death, $200 per week for being under the required ages of 55 and 19 (we weren’t). When I wouldn’t pay this outrage, the tyrant started a foreclosure, which triggered a second foreclosure by the bank. Every day was hell and the realtor wasn’t helping by constantly urging me to lower the price through the floor. As far as I could tell, everybody who could screw up, did screw up, from the insurer to the lawyers. Bamboozled at every turn, I wished for nothing more than a friction fire—where the fire insurance rubs up against the mortgage—anything to end this horror. Finally the damned condo sold. Months later, most loose ends were tied up. I lost many thousands of dollars. Bloody hell.
Didn’t I tell—scream—at the realtor that the whole thing was making me sick? Yes, I did, and probably at others involved in the fiasco, too.
That’s when it all started. This time.
I’d better venture into the endocrine labyrinth again.
I reflected on Dr. T’s comment, “Cancer is just bad luck.” You’re wrong, I thought. Cancer is the sneaky beast hiding in the crannies of each of our labyrinths, stuffing itself with the poisons in our lives. The bad luck part is being born into a society bent on feeding, feeding, feeding the beast.