No more Macho Joe

Today was treatment number twenty of thirty five, and the end of week four.  Fridays are team meeting days, where I meet with the nurses, nutritionist, and doctors.

It's great that they take the time to meet and stay one on one with their patients.  In today's pandemic suppressed world, they could so easily do it over the phone or zoom.  Yet, they make it a point to be there in person.

Kari was my nurse this morning, who takes my vitals, and of course, my all important weight.  I am down a pound from last week.  I need to remember to drink a bunch of water before next Friday's meeting.  

Kari went over all of the medications that I am taking, making sure that I am as comfortable as I can be.  I want to get off the steroid, so we are on a plan to ween off of it over the next two weeks.  

They have been talking about my skin being burned by the radiation since the beginning.  If I can possibly learn a lesson from all of this, it needs to be less cynical when they warn me of pending issues.  They were saying that it will be like a sunburn, and that I should be applying lotion everyday to keep ahead of it.  Did I listen?  Of course not.

Oh, it's like a sunburn, all right.  The kind where you passed out drunk in the Bahamas, on a spring break weekend, and your friends leave you there for six hours.  My skin is destroyed.  I barely need to touch it and I get another spot that starts bleeding.  At this point, all I can do is try to gently apply a medicated lotion, and try no to touch it.

I finally had to throw up the white flag and surrender.  I ignored the warnings of fatigue, I ignored the warnings of the skin, is there anything else that I need to be worried about in the next three weeks?  Cassie left the question for Dr. Akthar to answer.

Janine, the nutritionist, came in next.  She wasn't concerned about my one pound weight loss, but wanted to know how I was eating.  I have found that anything that I can roll up in a flour tortilla is the perfect food for me.  She understands that I can't open my mouth wide enough to put a spoon full of food in, and that the tortilla delivery system works well for me.  She suggested that I broaden my pallet and try chicken salad, and tuna salad in the tortilla.  That all sounds good to me.  She is all about me getting as much protein as possible, to keep my strength up.  I made a pot of ham and bean soup that I puréed into a smooth consistency, that I am able to drink from a cup.  I got two thumbs up for that.  I think I have the eating department covered.

Dr. Akthar came in next to talk about how the plan is going.  I asked him what they use as a benchmark of progress, since MRI imaging doesn't seem to play into it.  He said they use the daily treatment alignment overlays.  Everyday, he reviews the alignment.  This goes back to Ashley and the other therapists that have that all important task of getting me in the exact position on the table before treatment.  He zipped through all twenty overlays, and each one was perfect.  He said that if the alignment is perfect, the plan is perfect.  Can't ask for more than that.    

I asked him about the question that I left hanging with Cassie.  All Dr. Akthar could say is that the treatments gain intensity as they near the end, so including the irritation to my tongue and throat, all of these symptoms will likely get worse.  He said that if at anytime I feel the symptoms are becoming unmanageable, I need to call the nurse's station and get ahead of it.  "Macho Joe" has quickly turned into "I-need-to-do-whatever-they-tell-me-to Joe", and start doing it.

I asked about how the plan goes from here.  I have fifteen more treatments, then they cut me loose, and I go home.  The protons will be doing their work for about another thirty days after the last treatment.  At that time, I will come back to the Proton Center and have another set of high resolution MRI images.  If the plan was executed perfectly, there should be no more cancer.  Understandably, that's a lot to hope for, but that is the plan.  That's something to pray for.

From the beginning, there has always been this awkward relationship between Radiation Oncology, and Medical Oncology.  Medical handles chemotherapy.  Most times, they work together giving the patient both treatments simultaneously, but in my case, they decided to leave Medical out of the plan.  Squamous Cell Carcinoma can most effectively be killed with radiation, and doesn't respond well to chemo alone.  From the beginning, chemo was to be used to enhance the effects of the radiation.  Now that we have nearly gone full circle on this, the hanging question is if I need chemo at all?  

At a minimum, it will have to wait until after the thirty days, and the new MRI.  At that point, I will leave it up to my Medical Oncology team at Marshfiled in Minocqua to make that call.  Dr. Yasar and her staff are top notch, and I'm confident that they will do what is best for me.

So, that's another crazy week down, with three more to go.  The weather here has been rainy off and on.  I have a couple of projects to finish.  I better get after it, my time here is running out.