Reality check

Last week wasn’t a good one.  The previous post makes this quite clear.  I worried myself into a hole that threatened to swallow me.  How I was feeling didn’t help but my state of mind was much more fundamental in this.  I don’t think I’m going to die this week or next.  There’s still too much life inside me for that.  On Sunday afternoon I grabbed myself by the collar of the shirt I was wearing and yanked myself from bed.  There’s nothing to be gained from wallowing in self-pity all day.

The jolt of energy kept me going for the rest of the afternoon, through dinner and through the late evening.  I had my afternoon tea, played with the children until temporary exhaustion (mine, not theirs) and, at night, typed up the previous post.  It had been in my head and on paper for days already, just needed copying and shaping up.  Then it got the Friday timestamp because it reflected reality on Friday.  I simply had no energy for it earlier.

Eating continues to be difficult for the most part.  I just don’t manage to put enough inside me.  Sometimes I chew and chew and realize that normally, swallowing is automatic.  For me, it is oftentimes not.  During many meals I must make an effort to swallow, to get this mash down into my digestive system.  Sometimes I wonder what sustains me at all.  Then I look at my arms and legs and am frightened.  They have shriveled to little more than skin and bones.  The 400-calorie drink I consume each night cannot compensate for what I don’t eat.

On Sunday night I took an ibuprofen a couple of hours before going to bed.  I expected my back to hurt and wanted to see if I could avoid or at least mitigate the issue of sweating in bed.  I failed.  I could feel how I was getting hotter as the night progressed.  When I went to bed, everything appeared to have reverted to normal, but at some point I awoke in my usual pool of sweat, pyjamas dripping wet.  Thank goodness for the guest room with its extra bed.

This morning, I went to see my regular doctor for the first time in four weeks.  He had been on vacation.  It’s not that the substitute hadn’t done a good job, but the doctor who’s familiar with your case is a better person to discuss the important questions with.  Here’s what we talked about.

• I had been concerned about the cancer growing despite the current chemotherapy.  My doctor waved a quick CT off.  “We need more time to get a clear picture”, he said.  “Let’s do two or better three months of therapy.”  I liked the optimism in that.
• What about my blood?  My hematocrit value hovers just above 30.  Around 45 is normal.  I had 20 when I was diagnosed with cancer.  Should I be getting iron?  Maybe vitamin B12 again?  “No way”, he said.  “Maybe EPO or a blood transfusion, but it’s not really a big deal”.  What about the rest of it?  My heart races at 100, my lungs work overtime.  “You are more sick than you were half a year ago”, was his sobering reply.
• What about the sweating after taking ibuprofen.  “This can happen”, he said and prescribed me a different painkiller to try.
• Are the results of the mutation analysis ready?  This is the only avenue for unexplored therapies.  He checked his computer.  No, there was no information.  Here I got a bit cross.  It’s been six weeks since the stern radiologist had punctured my skin and retrieved two tissue samples from my lung.  “This is important”, I reminded him.  “It’s the only chance I have left.”  He promised he would have the results by next week.

So it’s really just a question of carrying on, with stubborn insistence in my body and hope in my heart.  There’s nothing else to do.  Pain will come and go, good days will alternate with bad ones, suffering will make way for moments of joy.  It’s all within expectations.  To avoid (or justify) another collapse like last week I asked the doctor explicitly, “Do you think I will die within the next two weeks?”  “I don’t think so,” he said.  It’s an opinion to build on.