Oncologist Visit – The Waiting Is The Hardest Part

For those of you who are fans of Tom Petty like Matt is you’ll recognize the title of this post. It’s a line from one of his more famous songs, ‘The Waiting’, which he wrote early on in his career. I thought it was appropriate for today’s post. On to the update.

Matt had an oncologist appointment on Friday mainly to check blood levels again and address any symptoms he’s been experiencing.

Since Tuesday he’s been having a lot of debilitating ‘bottom pain’. It’s hard for him to walk, hard to get comfortable, hard to sleep. This seemed to happen the last few times he finished chemo and usually started a few days after. The oncologists suggest this may be due to low white blood cell count being knocked down from the chemo. We did administer the shot a week ago which is supposed to stimulate the marrow to produce white blood cells. I thought for sure by now there would be some white blood cell activity. I was wrong. After getting the blood results back we find his ANC levels are back down to a 0 again. So once again no crowds and no visitors as his immune system is non-existent at the moment. It feels like we’ve been social distancing since 2020.

Our oncologist says it could take a week to maybe 10 days before the shot actually starts kicking in. Guess I thought it would be a gradual increase, but maybe it will be one big bang of white blood cell release. Needless to say the creams, ointments, sprays, sitz baths, etc… seem to help but only for a short while then pain returns. Tylenol and other similar types of medication seem to have a longer lasting effect, but unfortunately this may be a waiting game. And as the song goes, the waiting is the hardest part.

Matt’s platelets were also low so we stayed a few hours longer to get a ‘refill’ on those. We are back in clinic on Tuesday to check in once again on levels.

In clinical trial news I saw the below post on Facebook from Beat Childhood Cancer (the organization sponsoring the trial).

Click here for larger image

Looks like the trial opened on Thursday in Hershey, PA. This is the headquarters for Beat Childhood Cancer so their trials usually start at that location. Tampa location at St. Joseph’s Children’s Hospital hasn’t officially opened yet but hopefully will open up shortly. Matt still needs to qualify for it as well. Here is a link to the actual clinical trial: BCC Clinical Trial I believe Matt would be in Cohort 1 as those are the 2 chemo medicines he is currently receiving. We should have more information in the coming weeks.

One last thing I wanted to share since we seem to have a music theme going. It’s that time of year when kids are graduating high school and college. Matt’s own cousin Petey just graduated herself from college. Congrats Petey! With these events come commencement speeches. I’ve heard several over the years. Remembered none of them.

I came across this commencement speech video (see below) last week as it ended up going viral. It was the best one I’ve ever heard. The speech was given by country music artist Eric Church at UNC. Matt has some of his songs on his playlists. It was a very moving speech not just for college grads but for grown adults like myself who need to be reminded of such things on a regular basis. In his 6 strings of life speech he used the strings on the guitar as a metaphor for your life. Each string, or pillar, represents Faith, Family, Love and Partnership, Ambition vs Resilience, Community, and Individuality. To summarize, recognize when one of your ‘strings’ gets out of tune. When it does, tune it back up and get on to making great music.

Matt’s cancer diagnosis has left me with a very out of tune guitar. Time to tune my strings.