Electra & AML: The Eye of the Storm

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

This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).

Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.

Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.

On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.

Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.

Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.

Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").

So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.

On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.