Electra & AML: To Be Or Not To Be (A Raging Hypochondriac)

(See all posts related to Electra's ongoing treatment)


I have a well-established policy when it comes to health issues: ignore them long enough and they'll generally go away on their own. By and large, this has served me well: I'm almost always fairly healthy and bumps in the road tend to just be that. That's (a small) part of why this experience with Electra has been particularly scary.

We saw symptoms of leukaemia in Electra for months. But the terrifying and frustrating thing is that-as simple as it is to look back now and connect the dots-there was nothing to really cause any alarm. She'd been pretty fatigued and low energy for months. OK, well it's autumn in England, which will depress anyone (I've been lead to believe the sun does in fact still exist, but I'm not buying that story!). And beyond that, her work is intense. That, combined with a fairly repetitive daily routine and a feeling of inertia in terms of living arrangements and such made it easy to explain away as just a case of the "blahs", perhaps with a vitamin or mineral deficiency thrown in for good measure.

She'd had a sore throat, very painful and accompanied by a dry cough, that kept coming back. Well, OK, she works with kids; I'm by no means a germophobe, but the only reason that kids weren't the root cause of the plague was because we had the good sense to keep them locked away from the general public back then. You just kind of expect to get sick if you work with kids, especially in your first year or two. So the handful of other sicknesses she seemed to pick up (congestion, flulike symptoms, nausea etc) were easily chalked up to the same thing, with a run of bad luck assumed as the primary cause. She also bruised easily and once or twice had odd red dots appear on her skin, but the former could simply be a case of "just because" and the latter perhaps some slight allergic reaction.

And that's what's really scary. You can look back and attribute every aspect of what I've just described to the AML. Lowered white blood cell counts result in an immune system susceptible to everything. Low platelets lead to easy bruising and the red dots. And low red blood cell counts sap your energy. In retrospect it's obvious; at the time, of course not. The irony is that we'd wondered why she was seeming to have such a run of bad health luck and even postulated something serious, but never believed it to be the case.

Under these circumstances, it's thus hard to maintain my hyperchondriac mega-chondriac reckless anti-hypochondriac tendencies. I'm not now running to the doctor for every sniffle, but in the back of my mind is a little more fear than once resided there. This is of course compounded by the realities of the modern age: as useful a tool as WebMD's symptom checker can be, self-diagnosis is never a good idea, even if I were a real doctor, much less as a borderline-competent Ph.D. engineer. Pretty much any symptom plugged into a symptom checker can be a symptom of some type of cancer (or AIDS, or Ebola or Kuru or god knows what).

I will, of course, return to a wanton disregard for my own health, but I suspect I may have a lasting worry about others beyond what I've got now. I've always excelled at giving others advice that I myself refuse to follow and "go to the doctor" has always been high up that list anyway. I just hope I can refrain from call an ambulance every time Electra sneezes from now on.

STATUS UPDATE:

So, just to provide a long-overdue and much-needed update: the last week has been really really difficult for Electra. Where she was doing well with a few rough spots, she is now almost constantly tired and uncomfortable. She continues to spike fevers from time to time (rarely about 38.5C or so, but still a cause for concern), so she's on 4 or 5 antibiotics as well as an anti-fungal for good measure. These have to be administered at specific times which means she's often up until 12:30AM and then awoken once more at 6:00AM for the next round. So a good night's sleep is as yet elusive.

This is compounded by her central line (aka Hickman line), which was put in on Thursday. The backstory is that she initially had a PICC line put in until she could have the Hickman installed, which is only done on Thursdays. Both lines have the same purpose: a permanent in/out catheter to allow for injection of chemotherapy and other IV medications, and taking blood for sampling. In long-term patients this is done to avoid having to stick them with needles five times a day for six months. The PICC line goes into the crook of the elbow, up past the shoulder and stops above the atria of the heart; it is shorter-term than the Hickman, which is inserted into the right breast area and goes directly into the jugular. In any event, on Tuesday, the nurses and doctors became concerned that the PICC line might have gotten infected, so it had to be removed and a temporary line was put into her hand, which hurt like hell. On Thursday, that came out and the Hickman went in. While this will be much better in the long run, it is a minor surgery and has resulted in bruising (which of course takes longer to heal with no platelets). So she's quite sore and tender much of the time, which further decreases sleep.

So physically, things aren't great. Fatigue, discomfort, pain and chills (from the fever) don't make for a happy camper. But I think what's worse is the frustration. At more than two weeks in the hospital now, Electra is starting to feel the profound sense of impotence that comes with an extended illness (I swear, I'm not making a dick joke here, I do mean impotence in the more traditional sense i.e. powerlessness). As a patient, you have no real control over... anything. You eat when they bring you food, you are confined to your room, you lack the energy to do much of anything you'd do in your normal life. You have people who love you that are watching out for you and taking care of the minutae of life-paying car tax, working out details with the landlord, etc. But it's easy to feel helpless and patronised under these circumstances. It's the way it has to be, but that doesn't mean it's appealing. And I think Electra is starting to feel that way much more, which is frustrating.

I want to be clear: it's not a horrible, grey, dire situation. She's responding to the treatment about as well as you could expect and in a week or so should start to get her immune system back, which will help with the sleeping and the energy and all the rest, and should bring some relief. But the past week has been the most challenging so far.