College, Covid, and Chemo

Hello patient followers!  Yes, I've clearly been slacking off with my updates of late, though I do now actually have a number of things to share.

College

For starters, my youngest son Kyle just recently graduated from Kennesaw State University on May 9 with a BA degree in Fine Arts (digital animation focus).  We're so proud that he excelled in college, graduating Cum Laude with a 3.6 GPA!  He definitely has passion, drive, and talent for what he does.  Now all he needs is a job!

Kyle (with Mom and Dad) at KSU Graduation

Post graduation, Kyle recently came down to visit us here in Ponte Vedra.  We had a wonderful time together and, of course, spoiled him rotten while he was here.  During his stay, he had the chance to pop over to EA Games in Orlando for a tour/interview.  He was absolutely blown away by the studio and ever since has been dreaming of a job there.  Fingers crossed that he can find a studio that is willing to take him under their wing and grow this fledgling artist!  If you have any leads/suggestions, please be sure to pass those along to me and I will communicate those to him.

Covid

Remember that global pandemic that most of of thought (or at least hoped) was over?  Well I got hit with it hard right after Kyle's graduation.  Starting Thursday, May 11, I could tell I was heading downhill fast and my first (and subsequent) Covid-19 tests reported positive.  I had a fever of 102.5 and was extremely fatigued.  Thankfully though, since I'm already a patient at Mayo Clinic, I was able to be seen at treated at Mayo the very next day.  I received 3 daily IV treatments of Remdesivir beginning that Friday.  By Sunday, it was clear that I was already on the mend.  I have since made what appears to be a full recovery.  Man do I ever hate getting sick . . . especially THAT sick!

Chemo

For those who have been following my blog, I've had a bit trouble with chemo of late.  I was on Yondelis for over 3 1/2 years when it both 1) stopped being effective and 2) started leading to new complications, such as fever after 2 weeks.  That pushed me to the next drug, Halaven (Eribulin Mesylate).  Here too though, the complications (headaches and peripheral neuropathy) got the better of me and I was forced to take a pause from chemo anyways in order to get Proton Radiation.

Following my radiation treatment in Atlanta, my new doctor at Mayo Clinic in Florida was reluctant to try either Yondelis or Halaven due to the complications I had experienced previously.  Instead, he put me on a new regimen called Doxil, which he refers to as "chemo lite".  This drug is given by IV over 1 hour every 4 weeks.  My first round went without a hitch.  After second round, I started to experience one of the chief side effects of the drug: Hand Foot Syndrome (mainly just "foot" for me).  Let me show you what I mean:

Right Foot: Red/tender in center, blister on big toe

Left Foot: Very red/tender in center, big toe about to blister

Those pictures may not look like much, but I swear that this redness/tenderness makes walking extremely difficult/painful.  If it were to get much worse, I fear that it could jeopardize my mobility.

And it doesn't stop with just my feet!  A good chunk of my upper torso now has a painful rash and red bumps.  From what I can tell, areas that experience more rubbing/friction (such as underarms) are getting it the worst.  And this rash/redness is not just cosmetic, it can actually be quite painful.

I just received Round #3 of Doxil this past Friday (May 26).  Given the complications I have been seeing, my oncologist lowered the dose by 25%.  Though I hope this will reduce some of these complications, I also hope that the drug will be effective.  Next scan is mid-July, so I should know more by then.

As a general principal, I try to stay out of "what if" territory, though sometimes I allow myself to dabble into it on a temporary basis.  And while I'm "temporarily" there, let me share my chief concern: If Doxil does not work, what are are my options?  From a systemic perspective (short of a clinical trial, which is currently unavailable), there are no other chemotherapy drugs to try.  And though having no chemo sure sounds like it would make life a lot better, it clearly comes with risks, such as tumor growth and/or further metastases.

Memorial Day

In closing, this being Memorial Day and all, I wish to express my deepest gratitude to all the men and women who served in our Armed Forces and paid the ultimate sacrifice.  

And though this is rightfully where the focus should be today, I can't help but think of of all the Sarcoma warriors who have come before me who also made the ultimate sacrifice.  Today I will quietly remember and honor all such "warriors" (in the Armed Forces and otherwise) for the sacrifices they have made and for helping us come closer to ending the scourge of war and our battle with cancer.

Proton Radiation Update

As you recall, I completed my Proton radiation back on January 9, 2023.  Fast forward 6 weeks to February 21, I had my first post radiation scans.  Though the radiology report for that was encouraging, I had no idea just how well things had gone.  Fast forward again to March 10 when I had my first follow-up visit with Dr. Mark McDonald, Medical Director at the Emory Proton Therapy Center.  In our discussion and his patient portal notes, my "tumor appears notably more necrotic and the tumor volume has decreased by approximately 30%".  See it for yourself in these before and after scans:

As encouraging as this is, I am by no means out of the woods as there are other areas of disease, including a right renal mass, which fortunately remain stable for the time being.  Long story short: this all means that I will have to continue some sort of systemic treatment.  Exactly what regimen remains to be determined.

In other news, Holly and I are moving this coming Tuesday (March 14) to Del Webb Nocatee, located in Ponte Vedra, Florida.  (Think south of Jacksonville but north of St Augustine and you'll be in the ballpark.)  This is all part of a larger master-planned community called Nocatee, which includes families of all ages.  The best part?  I get to drive a golf cart to the clubhouse, grocery store, and nearby restaurants!  I'm so excited!

As part of my transition to the Jacksonville area, my ongoing cancer treatment is going to be done at Mayo Clinic.  I've already met with my new oncologist and plan to see him shortly after we get down there.

Here's to save travels and new adventures in Florida!

Proton Radiation Completed!

Just a quick update to say that I completed my proton radiation therapy last Monday, January 9, 2023.  So far (and it is early), I have experienced no significant negative effects from the radiation, though this could change in the weeks and months ahead.  Here’s to hoping that we’ve seriously hurt the tumor while the rest of me (literally) walks away unscathed!