Radioactive

Close The Door On 2013.  

Im My Bloodstream: Anti-inflammatories, Levaquin
On The Stereo: No Day Like Today, Idina Menzel

Update: Today, Feb. 4th, 2019

My latest head wound is healing, ever so slowly.  We continue to cut away the clear plastic covering as it lifts away from the newly formed skin.  I can get out and do most anything I want, but I am embarrassed with the look of my head.  It is not yet at a point where it can receive company, so to speak.  A hat is required.  As a result, I cannot go to the club for lunch or dinner.  I am of the age that I believe that men should not wear hats indoors, so I restrict myself to a minimum of dining outings, which involve a cheeseburger or chicken wings.  I reluctantly keep my hat on, but that just annoys me.  My meal is never quite as good.  Call me old fashioned.   I am what I am.

My calendar is filled with upcoming medical visits, including my dermatologist and lymphoma  doctor.  My plastic surgeon is on hold for a little while, as there is no rush to attend to the scalp surgery.  I am in good shape for the condition I'm in.

Jim Walker, a former colleague of mine, when we were both in Tuscaloosa, called a short while ago.  He simply wanted to catch up.  That, and talk cancer, children, genetics, philosophy and love.  I was most appreciative of his care and his honesty.  Some calls come at the best time.  His timing was, for me, excellent.  My day was made instantly better.  I wish the same for him.

Moffitt Cancer Center, Tampa Fl.  Oct. 31st, 2013.  The Trial Begins

The infusion staff were exceptional.  The nurses were caring and sympathetic, as one might hope when you are on a short leash on life and this trial is your last role of the dice.  The trial group was split evenly, with Group A beginning their sessions with the new Bristol-Myers Squibb drug, nivolumab, which was not FDA approved, and Group B, with ipilimumab (Yervoy), already available.  The inclusion to either was random.

The process began with a CT scan and blood draw, to confirm the status of the cancer tumors.  I was designated to Group B, which meant I would take the FDA approved ippy first.  The dosage was 3mg/kg every week for four sessions.  The infusion time was estimated to be 90 minutes per treatment.  It consumed almost another half hour, likely because it was the initial visit, exacerbated by some delay in receiving the drug from the lab.  The drug was prepared  only after the lab was assured that I was there, in place, and that my vitals and blood tests were satisfactory.  A saline drip was begun, to hydrate and flush, and then, when the Yervoy was added, it was connected to my drip line.   The nurses were vigilant.  They showed continual interest in the drug flow, and every bit as much attention to my comfort and my history with melanoma.

My first treatment progressed smoothly.  The whole affair was pretty much a non event for pros like us, who had taken part, many times, in the most punishing of chemotherapies.  Kath and I realized this trial  might well be our last opportunity and while we were apprehensive, we knew we had to remain positive.  We smiled and exchanged small talk, but our glances belied our truths.  We had a long journey ahead of us.  But we had been given the fortuitous chance of a first step.

We left for Fort Myers, stopping for a quick lunch along the way, and a short time later, when we got home, we were handing out candy to the few neighborhood kids, long before we started making dinner.

As our week continued, there were none of the side effects we were given to expect.  None.  Kath said it was a piece of cake.  A walk in the park.  Nothing like we had endured with our former chemotherapies.  The next few weeks were life at its best.  We played bridge, golfed, exercised regularly and dined often with our friends and neighbors.  My scalp wound from the AVM still leaked.  We kept cleaning it as well as we could.  As much as my spirit was uplifted by the actuality of the trial,  I was distressed by the disregard of the neurosurgeon to attend to the after effects of his surgery.

November 22nd, and we were back at Moffitt for our second round of bloodwork and a CT scan.  Then, after a review with Dr. Weber, who was delighted to hear that we had not suffered any side effects, we moved ahead with the infusion.  Again, the process went without a hitch.  We had lunch in Tampa with Jim and Janis French, and then home.  I was beginning to suspect that the ippy was not having much effect on my cancer.  Any cancer treatment I had taken, previously, was brutal.  The chemo and your cancer were at war, and your body was the battleground.  In this case, nothing.  Nada.

Kristin and Doug were living in Los Gatos at that time, and we were heading out to spend Thanksgiving with them, flying out on the 28th.  Under the terms of our trial contract, I could not travel unless approved by my doctor.  It was also stipulated that I could receive no treatments from any doctor, until approved by Dr. Weber.  Any treatment could disqualify me from the strict parameters of the trial.  So we sought and received agreement to travel, given that I was handling the drug extremely well.

On November 27th, all hell broke loose.  That evening, my stomach clenched repeatedly, until I was almost paralyzed with pain.  Kath called Moffitt and we were ordered to get to the ER at Gulf Coast Medical Center in Fort Myers, pronto.  It was all I could do to get to the car.  The battle that I referenced had finally begun.

On arrival,  I was taken in immediately.  We informed the staff of my participation in the clinical trial and that I was not to be given anything until green-lighted by Dr. Weber.  Kath called Dr. Weber's contact number and we waited for the call back.  In the meantime, blood was drawn and analyzed.  The results, for some reason I do not remember, were alarming to the doctor.   I was doubled over, almost unable to breathe, and honestly have no remembrance of what the doctor said.  I believed something inside me had ruptured.  The pain was excruciating.

Within half an hour, Dr. Weber called and talked to the attending doctor and prescribed a massive dose of prednisone.  I was admitted and spent the night in the hospital, with an IV drip and pain killers.  Poor Kathy went home by herself, not knowing what had happened, or would happen to me.

Sometime in the early, early morning, the prednisone kicked in, providing much needed relief.  I could finally breathe again and my stomach pain began to dissipate.  So, that was the first manifestation of Yervoy.  Excellent.  Like the myriad drugs that I had taken in my cancer fight, this one, too, had shown its nasty side.  This was a far cry from the ease of the first infusion.  This was going to be a real challenge.  Buckle up, and get ready.  I was released from the hospital and Kath took me home.  We reported my condition to Moffitt and cancelled our trip to see our kids.  I was forced to stay near home, in case of recurrence.

Our life continued, albeit with chronic bouts of stomach pain and the scalp wound that would not heal.  I was becoming somewhat fatigued and maintaining a sunny outlook became a chore.  The side effects were piling on and just getting through the day was difficult.  Dr. Correnti was not interested in anything more than looking at my head and sending me home, so I basically stopped seeing him.  It was a struggle to get through every single day.  Eating was problematic.  My appetite was gone. When I did eat, constipation and diarrhea alternated, both bringing severe stomach cramps.  No matter how bad, Kath and I agreed that we needed to stay on the trial.  We knew an end to the pain would eventually come, if we just dug in and hung on.

On Dec. 13th, we received our third infusion, after the CT scan and blood draw.  We then met with the doctor, and after a fairly long discussion with his staff, he prescribed another round of prednisone, in an attempt  to give me some relief.  He was not absolutely committed to doing so, however.  His wife had to take a much smaller amount due to some health issue and he told me "it made her loopy".  I asked him if he was sure that her behavior was because of the prednisone.  He went on for a second, and then stopped, realizing what I had just said. Then he laughed, shook his head, wagged his finger, and repeated it to his entourage, "That," he said, " is funny".

I told him that we would like to see our Seattle kids for Christmas, and asked if that was possible.  He believed, with the prednisone, that we would be alright to go.  He cautioned us about having anything medically done, if we had another problem.  Just call him right away.  He had some medical contacts in Seattle and was sure we could resolve any issues over the phone.

"Go, and have a good time" he said.  He was in a good mood and quite pleased that I was tolerating the drug and still willing to continue, knowing well that our quality of life was not getting better.

We left, and a few days later, we were back in the emergency room at Gulf Coast Hospital.  They recognized me and remembered my situation and took me back directly.  I had a CT scan and blood work done right away.  I was again in severe pain.  My stomach honestly felt like it was going to explode.  I had phenomenal levels of lipase and amylase.  It was acute pancreatitis.

So, after conferring with Dr. Weber, who was attending a holiday black tie party,  we were fed a saline drip and a massive dose of prednisone.  It was becoming my drug of choice, apparently.  We finally left the hospital just before midnight, with orders not to eat anything for a day, eat and drink only clear foods and not to drink any alcohol for six weeks.  I was not amused by the side effects of Yervoy.  And we had no idea if there had been any improvement to my melanoma.  No changes had been observed from the blood draws or CT scans.  We had been warned, previously, that changes may show up months after the infusions ended.  Waiting is a tough thing to do sometimes.

Dr. Weber called us shortly thereafter and we discussed our medical situation and our plans to go west for Christmas.  He said he was not going to proceed with the last dose, as planned.  In his estimation, another  pancreatitis attack could prove fatal, so he would not take that chance.  He said we could make the trip, as his Seattle colleague would see me if I had another episode.  He cautioned us to be very careful with my diet, and he would see us at our next planned appointment in the New Year.

              Poppa and Grammy with Eleanor, Bea and Addy in Issaquah, Christmas, 2013.

We flew out on the 23rd and came home on the 27th.  We stayed at the Westin in downtown Bellevue, and two of the girls stayed one night with us.  Together, we watched the Santa Clause parade from our window.  It was wonderful, as always, to see Stephanie and Gray and our grandkids.  As joyous as our time was, there was one dark cloud hanging over our heads.  I had not completed and would not be allowed to complete the first stage of the clinical trial.  I planned to beg the doctor to reconsider, when we next met.  My future was not good without a chance at stage two and this new trial drug.  If I was to die from pancreatitis, so be it.  At least I would have tried.

                    Bea in the electric car with Gray and Stephanie enjoying Christmas morning.

Despite seeing the kids, it was not the merriest of Christmases.  Better and worse to come, as you know.

Goodbye and good riddance 2013.  You were a tough one.

Catch up next week.