Golly!

Some belated thank yous (there are probably others...things arrive and I don't always catch them in a timely manner [my desk (life?) is chaos after 2 months of Lloyd recovery], so my apologies if I've missed an acknowledgment these past few weeks).

G&G:  Thank you for the teddy bears!  That was so thoughtful of you to send them from Texas.  The girls were thrilled.

Mystery person:  Thank you for the cookbook.  It has some tasty-looking recipes that I look forward to trying.  Perhaps the cookbook is just a loan from a neighbor or friend, because it was laying against my door one day, but I can't return it if I don't know who left it.  :)  My apologies if I've lost an accompanying note.  

I'd say that the hbomb has recovered up to maybe 40-50% capacity at any given moment.  Sometimes my physical prowess feels better than that, like the day I did a 2 mile Leslie Sansone walk AND took the dog on a short walk outside (let's have a moment of gratitude for ice-free sidewalks!!!  HUZZAH!!).  And sometimes my physical prowess is worse than that, like the next day when I was WASTED tired from what was likely too much physical activity on the day described, so I skipped all exercise except for yoga, and I rested and slept and started muttering, "golly" to myself.  And sometimes my brain feels better than that, like the morning I visited with my friend/neighbor and truly enjoyed myself (i.e., the act of engaging in a conversation didn't feel like a chore).  Rarely are both brain and body feeling powerful at the same time, however.  And all of it is so much worse in the evenings, which is a bummer because that's when the family is home.  But, it's all forward progress, isn't it?

(The "golly" sidebar:  I wanted some tea, so I tried to get up and make some tea but was surprised to find that I was a bit stuck in the chair due to my exhaustion, so I said "golly," then I managed to extricate myself from the chair only to realize how heavy my legs were when I tried to walk so I somewhat breathlessly said, "golly," again.  I've been saying it ever since, in moments of quaint, exaggerated incredulity at my own struggles, I suppose.  The full thought is something like, "Golly I'm surprised that this task is so difficult! What gives?"  Or, when kids aren't around, "WTF?"  Or the following phrase shared by my friend P, "What fresh hell is this?")

My quadriceps muscles are strengthening.  I'm getting better at standing up and at going up the stairs (the "golly" story notwithstanding).  Although at the end of the day it's all a wash and fatigue overrules.  But in the mornings I can very nearly go up the stairs like I usually would.  Nearly. 

I'm getting oh so close to cutting my steroid dose in half, but I haven't done it yet.  I'm trying to be more patient than last time and to more honestly evaluate "no brain swelling".  For example, I might have very little brain swelling for most of the day, but then feel acute brain swelling all evening (while my body waits for the steroid to kick in I suppose), so I wonder if I should feel no (or at least significantly less) evening brain swelling before deciding to cut my steroid dose?  What I do know is that when Dr. Radiation Oncologist asked me about the steroid step-down, he asked about the brain swelling, and when I told him that I wait for two days of "no brain swelling" before cutting a dose, he emphatically said "good".  So I think it's pretty important that I feel comfortable in the brain before cutting my steroid dose.  The last time I cut my steroid dose I had a lot of brain discomfort, so I probably cut the dose a bit too soon in my eagerness to be off of the steroids.  Regardless, the brain swelling is steadily decreasing day by day, and hopefully I'll recognize "no brain swelling" when it happens.

I don't really sleep in the afternoon anymore, huzzah!  This is probably because I'm sleeping better at night.  I routinely sleep 10-12 hours at night, which is glorious.  In the afternoons I still need eyes closed time, and I still need bodily rest, but I don't need sleep at that time of day.  That's likely freed up a bit of my recovery schedule, although I can't report what I've done with that free time.  I think I still spend it lying down, lol.  The fatigue continues, but it's not as bad as it was.  Healing a brain is energetically expensive, I guess! 

I conserved my energy on Thursday so that I could accompany the girls to Science night at their elementary school.  I was glad to be there with the family, and the girls appreciated that I could share the activities with them.  They had a ball, and I managed to find a place to sit whenever I needed one.  No problem.  I also ran into several friends, which was nice albeit quick!  It's typically just a walk-by friend sighting at these things, because their kids are going that way and mine are going this way and so you just smile and say hi and then you're gone.  But I did get to visit with a few friends whose kids were at the same activities as mine, and that was very nice.

One friend had an interesting question for me.  She asked if I was getting bored?  Huh.  That's a great question.  The simple answer is that no, I'm not at all bored.  First of all, I'm very busy feeding myself, hydrating, exercising, resting, and healing.  Secondly, I guess I don't even know what secondly is.  I don't feel well most of the time, so I'm usually adjusting my activity to try to feel better, and I suppose that changing my activity largely prevents boredom.  If my head hurts, I lay down.  If my legs feel restless, I either exercise or find a standing-up activity, like cooking, unloading the dishwasher, organizing the spice cupboard, etc.  And if I AM feeling well at a given moment, then there are plenty of things to be done for the family, for my affairs, or for my job, depending on what I feel capable of achieving.  I definitely wouldn't say that I've gotten bored.  Am I weary of feeling unwell?  Absolutely!  But not bored.  Not yet.  If this continues on and on then I can envision a day that I get bored, but golly I hope that I'm currently on the recovery home stretch!  I feel as though I must be nearing a higher-functioning recovery point.  It's coming.  And I'm ready for it!

Top 4 items on my when-I-feel-better list:  let the girls invite a friend for a sleepover, do science, garden with the spouse, and eat broccoli.  (I am missing dietary insoluble fiber hardcore!  I'm not sure when I can add it back to my diet, but since Dr. Oncologist suggested that the steroids are one of the contributors to my prior gut issues, I'm waiting to get off the steroids before freely eating insoluble fiber.  I've cheated here and there [a few bites of beans, lettuce, or whole grain this or that] without suffering, but I remain cautious.)