Radioactive

The Trial Continues - 2014

Today's Update

Another head operation on Wednesday went well, as usual.  I cannot let the bandages on my head get wet for 7 to 10 days, but I promise y'all that I will keep the rest of me clean.  I feel fine, and today we drove to Naples for Kath's early morning appointment to see her rheumatologist.  She is struggling with her arthritis and will need to go back down again within a month to get a needle in her knee to help alleviate the pain.  We took some time to try to visit friends and our godson in Sarasota. 

Tomorrow, early, again, we will drive to Kristin and Doug's for Thanksgiving.  That is about a 10 hour drive, and we hope to be there in time for dinner with them and the boys. I will keep this short, as it is now 8:00 and we have not started making dinner yet.  Our Alabama "son",  Jayson, and his wonderful family stopped in for an update visit - always special.   Head bandaged and feeling great.

Will get pathology results in a week or so.  Have a wonderful Thanksgiving.  Try to share as much love as you are able.  It is even better than turkey.  Much love to all.  Over and out.

On The Stereo: Keep Talking: Pink Floyd
In My Blood: Anti-seizure meds, levaquin

Regular clinical trial visits continued January into February.  Bouts of sickness came and went, but none had been as debilitating as was the ipilimumab called Yervoy, or ippy, for short.  This new immunotherapy drug, nivolumab, had not yet been approved by the FDA, but, through the February sessions, it had not shown the toxicity levels of the ippy.

For the first time, the CT scans started to show signs of improvement in the cancer masses in multiple organs.  We had been warned that, often, it will take some amount of time before any benefits might be visible.  Finally, there was no doubt that my cancer was shrinking.  The ongoing malaise and stomach pains had been troublesome, but with this news, the side effects seemed well worth the possibility of  a cure.

                                                   

We continued our regular life with friends and neighbors, but having Kristin and Doug and their kids spending time with us, made an incredible difference in my attitude in dealing with the issues resulting from the trial.  Everything seemed better.  Having my family around to help, irrefutably improved my ability to deal with the ongoing fight to conquer cancer.  Love and laughter were the best therapy I could ever have.

                                                     

 
Eli shares his love of life with us.                                                       Avet ripping up our golf course.


On April 12th, Barry Neable, a Canadian doctor and friend, was playing with a group, making the turn from hole 9 to 10, passing by the clubhouse.  The ongoing drainage from my head wound had, over those many months, gotten worse.  That morning, Kath had told me that she could see some metal in the scar.  I interrupted Barry, with apologies, and asked him to have a look.  He said that it looked like staples, perhaps, were clearly showing, and told me the I should get to my doctor as soon as possible.  

Kathy called Dr. Correnti's office and they advised her to get me to get to the ER immediately.  I asked why I would do that, when Dr. Correnti already knew of the issue, and had done nothing, except look at and clean the wound, as we had previously discussed.  They were adamant in their advice.  Off to the ER.

After we were admitted into the hospital, I was seen by the attending physician, who, after a thorough look at the wound site, asked me what, exactly, I was doing in the ER.  I reviewed my story, from the AVM surgery through to that day and the orders from Correnti's office.  The attending doctor was livid. "What does he expect us to do?", he asked me.  "Why has he not dealt with this?"  He even asked someone on his staff if my name could be removed from the incoming list.  That could not happen.  I had been clearly checked in and the information recorded.  He told me that Dr. Correnti needed to look after me.  He said that Correnti had no right to hand me off the the ER, when he was not caring properly for his patient.  He told us that they were not equipped to look after this type of thing.  I told him I agreed, but I was only doing what my neurosurgeon had prescribed.  I had no doubt that I should not be there.  I thought it best if I did what I was told.  If something were to go worse with me, he might blame me, relieving himself from responsibility.  We had to ask ourselves what was he trying to do?  We left the ER, none the better.  I had had it with my surgeon.  Why was he continually stalling and ignoring an obviously serious problem?  I knew he was worried about operating on me again, but I thought he had a moral duty, if nothing else, to help me deal with this mess.

On April 16th, we finally saw Dr. Correnti.  He told us the metal pieces Kath had been talking about, were two of the screws used to patch the section of bone he had removed to operate on the swollen section beneath my skull.  He performed his regular cleaning of the site and he admitted to us that he was uncertain of his ability to fix the problem without the assistance of a plastic surgeon. He suggested, without follow up, that the hospital in Gainesville had better facilities and might be able to manage the corrective surgery.  He then returned to his idea of getting a local plastic surgeon to aid him with the clean up.  He said he would contact Dr. Ritrosky.

There I was.  The skin had receded from the surgical scar, leaving a metal dish on the top of my head, open to public viewing.  I was probably picking up radio waves from Mars.  More seriously, in the middle of my war against cancer, I was now prone to some infection which might undo all the recovery we had made from the AVM.  And maybe get me tossed from the trial.

On May 2nd, at our next Moffitt visit, Dr. Weber advise us that further progress was evident in the shrinking of the tumors.  Things were continuing as planned and the trial results were most certainly showing promise.  He did ask me to see their neurosurgeon, Dr. Tran, and get his take on my untreated head wound.  We agreed to do that.

Dr. Ritrosky was known well by me, although I had not told Correnti.  I had been treated by him for multiple skin issues, including basal cell, squamous cell and melanoma.  He had been, and I'm sure, still is, a talented and caring surgeon.  I, coincidently, already had an appointment with him on May 5th, for another of my many ongoing excisions.  While I had been wending my way through my trial and AVM procedures, I continued to have my skin lesions removed.  I was a regular at his practice.  On this visit, Dr. Ritrosky advised us that he had not ever heard from Dr. Correnti.  He did say he would be glad to help out and would give his schedule to Correnti, so that he could schedule the operation before Memorial Day.  I passed this information on to Dr. Correnti, to ensure he would know he had the help he required.  All he had to do was arrange for an operating theatre and call me.  I was ready.

On May 16th, our regular visit to Moffitt was interrupted by Dr. Tran, who invited me to see him on May 27th, which we did.  We talked extensively about the entire AVM story and he had his nurse take a sample of the leakage, which he intended to send to the lab for analysis.  He was sure it was an infection of some sort and said we should plan to have him operate and repair the damage.

At that point we were still hopeful that Correnti would call us and schedule an operation to fix the problem left over from his surgery.  We had been continually calling him, but he had gone quiet on us.  I still clung to the belief he would man up.

We had traveled with friends to Myrtle Beach to watch one of our club pros try to qualify for tournament play, on June 22nd.  That, unfortunately, did not go well, and he did not make the cut, so we headed home.  Our group had fun in spite of his loss and my mind was at least partially relieved of the troublesome cloud hanging over our heads.  Between worries of the trial and the possibility of an infection in my skull, and how that combination could alter my life, it had been difficult to focus or enjoy life as we had always lived it.

On our meandering trip home, we stopped to play a round of golf and spend two nights at The Sanctuary on Kiawah Island.  Our anniversary was on the 29th, and with the tumult that engulfed us, the indulgence seemed somehow earned.  During breakfast, my phone rang, and Dr. Tran told me in no uncertain terms, that I needed to get back to Moffitt and another operation, as I had a staph infection attached to the bone and my head needed to be reopened and the infection removed to keep me alive.  You will die, he told me, if you do not take care of this problem.  There had been no calls from Dr. Correnti.  I was on my own.  Some breakfast conversation.  Happy anniversary my child bride.  Sickness and health, right?

Here we go again.