Enjoy life

It’s been two weeks since I last wrote.  I’ve already got emails full of concern for my well-being.  Thank you for these.  I’m doing fine.  Things are roughly as they were when I last wrote, after leaving the hospital two weeks ago.  I’m worse than last year but much better than in January.  I eat with sufficient appetite, and I have enough energy to get me through most of the day.

The reason I haven’t written is that not much has happened – and what has happened has kept me from writing.  Five days ago, my mom came over for a visit, just days after the German state she lives in was struck off the Swiss high-risk list.  As soon as she could visit us without having to quarantine for two weeks, she hopped on the train.  The children are crazy with happiness and I enjoy the evenings with her, but it means I have much less time to write.

Last Monday, I went to see my oncologist.  This would normally merit a post, but we didn’t talk about much.  I forgot to ask for what I was really interested in, a detailed discussion of the CT scan taken late in January.  What I asked for, the results of the sequencing of the live metastasis, hadn’t arrived.  Still, I didn’t go home empty-handed.  My doctor gave me a prescription for yet another chemotherapeutic drug.  He had decided Stivarga wasn’t worth the bother.

Trifluridine, the new drug, which is also known by its brand name of Lonsurf, is, depending on how you count, the fourth or fifth drug I’m on.  That I was taken off Stivarga kind of obviates the need to discuss the CT.  Things have gotten worse.  Still, it would be nice to know how bad it is.  Trifluridine is similar in its action to the 5-fluorouracil I took at the beginning, first with great hope, then also with fasting.  The drug didn’t stop the cancer.  What are the chances Lonsurf will be better?

It doesn’t matter.  Lonsurf is the last drug on the list the doctors had compiled for me at the beginning of my battle.  Beyond it lies darkness – unless the sequencing comes back with a glimmer of hope, a mutation that will serve as a target for an untried therapy.  Again, I don’t know how likely this is, but it’s the only thing that keeps me going.

I’m happy to repeat that I’m doing all right – though I’m clearly sick.  I don’t know whether I’ll be able to ride my bicycle to work when it gets warmer.  Maybe my breath will be too short for the gentle climb each morning.  I will surely not be pulling the children along the river in a trailer this spring - unless I buy an electric bicycle.  I cannot run either.  The impact is more than my belly region can take.  Even sledding down a bumpy slope was a little bit too much.  I get tired quickly.  My belly always feels odd.  But I’m alive, and I have enough power inside me to enjoy life.