June 10, 2019
In My Bloodstream: Olmesartan Medoxomil, Omeprazole,Tamsulosin
On The Stereo: Take It Easy, The Eagles
This past week, despite some continuing blood pressure irregularities, was really good. It was made so, by you. Many friends texted, e-mailed, phoned, or visited. I needed. You delivered. Thank you.
External surface improvements. Beard future, uncertain.
I want to take you back in time, to December 29th, 2016.
My dear doctor friend, Jeffrey Weber, had completed his duty with Moffitt and Bristol Myers Squib. The trial was over, and the good guys won. As far as I knew, the only casualty of our trial, was the death of one man, who died of unreported side effects, not from the treatment itself. The rest of us were now on cruise control. At least, that was my belief.
I was offered the choice of continuing my association with Moffitt, in the care of a new doctor, or keep Dr. Weber, as my oncologist. That would mean regular trips to New York. Dr. Weber had been offered a king's ransom to move to NYU. He cleverly took it. You might remember, that I had moved from Tuscaloosa to Florida, and continued to travel back to the Kirklin Clinic, in Birmingham, Alabama , for my regular appointments. That had lasted for more than a year, and might have continued but for the fact that my melanoma had worsened, and hospitalization was required. It was then, that we decided to find help closer to home. We were now back in similar circumstances. We would stay close to home, at Moffitt, where my caregivers had always been superb. Dr. Weber would not be forgotten. Not just for his medical brilliance, but for his heart.
While the rest of the world was involved in planning for New Year's celebrations, we were at Moffitt, visiting with Dr. Eroglu, who had been my oncologist for over a year. This was a long meeting, in which she reached back even further in my history, so she, and us, would be in agreement on my condition, on that particular day. I had just completed blood work, an MRI and a PET scan. I felt the mood in the room to be uncomfortable, even ominous. I was still a fairly new patient for her, and, as a result, we did not have a particularly strong relationship. She spoke softly, and my hearing is sketchy, so I had to lean in and strained to pay attention.
I remember my own amazement, as she read aloud a partial list of my surgeries and treatments. We went into some detail on several issues, as she needed clarity on specific sites and treatments.
I want to take you back in time, to December 29th, 2016.
My dear doctor friend, Jeffrey Weber, had completed his duty with Moffitt and Bristol Myers Squib. The trial was over, and the good guys won. As far as I knew, the only casualty of our trial, was the death of one man, who died of unreported side effects, not from the treatment itself. The rest of us were now on cruise control. At least, that was my belief.
I was offered the choice of continuing my association with Moffitt, in the care of a new doctor, or keep Dr. Weber, as my oncologist. That would mean regular trips to New York. Dr. Weber had been offered a king's ransom to move to NYU. He cleverly took it. You might remember, that I had moved from Tuscaloosa to Florida, and continued to travel back to the Kirklin Clinic, in Birmingham, Alabama , for my regular appointments. That had lasted for more than a year, and might have continued but for the fact that my melanoma had worsened, and hospitalization was required. It was then, that we decided to find help closer to home. We were now back in similar circumstances. We would stay close to home, at Moffitt, where my caregivers had always been superb. Dr. Weber would not be forgotten. Not just for his medical brilliance, but for his heart.
While the rest of the world was involved in planning for New Year's celebrations, we were at Moffitt, visiting with Dr. Eroglu, who had been my oncologist for over a year. This was a long meeting, in which she reached back even further in my history, so she, and us, would be in agreement on my condition, on that particular day. I had just completed blood work, an MRI and a PET scan. I felt the mood in the room to be uncomfortable, even ominous. I was still a fairly new patient for her, and, as a result, we did not have a particularly strong relationship. She spoke softly, and my hearing is sketchy, so I had to lean in and strained to pay attention.
I remember my own amazement, as she read aloud a partial list of my surgeries and treatments. We went into some detail on several issues, as she needed clarity on specific sites and treatments.
"Assessment:
The patient is a 70-year-old gentleman whose original primary melanoma was resected from the scalp
in 1996 with positive lymph nodes in the right side of the neck and was felt at that time to have
pulmonary disease. He was treated at University of Alabama with platinum, Velban and dacarbazine
with outpatient interleukin-2 for at least 6 months after his initial surgery. He has had multiple
resections of subcutaneous lesions on the back, neck and anterior chest. In July of 2004 he
developed recurrent disease in the right neck and had a right neck dissection with one lymph node
positive for melanoma. He subsequently had a pulmonary resection that was negative for tumor. In
2005 he received one year of adjuvant high-dose alpha interferon therapy. In June of 2012 he had
a surveillance PET scan showing a left upper lobe nodule consistent with melanoma that was less
than 1 cm. Surveillance scans done in April 2013 showed stable lung nodules. 8/22/13 PET/CT scan
showed significant increase in size of pulmonary nodules now greater than 1 cm, a new adrenal
metastasis, and multiple small areas with an SUV consistent with small hepatic metastases.
- on 10/10/2013, pt was started with ipilimumab per protocol MCC 17365 with sequential Ipilimumab
plus nivolumab.
- in Jan 2015, pt developed pancreatitis and came off active treatment, and has been getting
surveillance scans q3 months since then. Here today at week 145 with stable scans.
- on 4/15/16, pt had six skin biopsies, one from L arm showed melanoma 2 mm, no ulceration, 3
mitoses/mm2, margins clear, and a R posterior shoulder melanoma, 7.3 mm thickness, with
ulceration, 6 mitoses/mm2 – metastases from another site is favored. Both were resected by
patient's plastic surgeon. Path was reviewed here at Moffitt from the L arm site and favored a
primary melanoma , Clark level IV, 2.1mm. Non ulcerated. mitotic rate 2per sq mm. The R posterior
shoulder wide-excision from 4/2/16 was also reviewed at Moffitt - pT4b/NX/MX - only a focal
junctional component was present, therefore although a primary cutaneous melanoma is favored a
recurrent metastatic lesion cannot be excluded with certainty. Per discussion with our surgeons, if
the patient had not yet had a wide-excision, a SLN would have been considered. However, given
that lesion was already resected by outside surgeon, we will continue to monitor closely with
imaging."
While I was deeply entrenched in this fight with cancer, the reality of my situation was beyond me. I had been consumed by the simple, but difficult act of living each day. For years, my only perspective was from a single plane. Here I am. I am surviving. What do I do next? Simple. Uncomplicated.
I never saw what others saw. I did not have an external viewpoint. My doctor was telling me now, exactly what that perspective was. I had been, and still was, in deep shit. That is how she identified me. She was circuitous in doing so. She was not as forthright as me. Bottom line guy.
The depth and breadth of my cancer was horrific. I did not dwell, or even pay attention to what I had been through, all this time. For days and months and years, I had accepted the consequences of cancer. I had minor surgeries. Major surgeries. Radiation. Chemotherapy. Immunotherapy. I had endured staph infections and struggled with side effects and the pain from all of this. I had tried to be a good husband, father and friend. I had continued to work, while the wounds were still raw and the chemicals ruined my insides. And now, here I was. I thought I was better. And the doctor was telling me not.
The following is an exact copy of the doctor's notes.
" - on 4/15/16, pt had six skin biopsies, one from L arm showed melanoma 2 mm, no ulceration, 3
mitoses/mm2, margins clear, and a R posterior shoulder melanoma, 7.3 mm thickness, with
ulceration, 6 mitoses/mm2 – metastases from another site is favored. Both were resected by
patient's plastic surgeon. Path was reviewed here at Moffitt from the L arm site and favored a
primary melanoma , Clark level IV, 2.1mm. Non ulcerated. mitotic rate 2per sq mm. The R posterior
shoulder wide-excision from 4/2/16 was also reviewed at Moffitt - pT4b/NX/MX - only a focal
junctional component was present, therefore although a primary cutaneous melanoma is favored a
recurrent metastatic lesion cannot be excluded with certainty. Per discussion with our surgeons, if
the patient had not yet had a wide-excision, a SLN would have been considered. However, given
that lesion was already resected by outside surgeon, we will continue to monitor closely with
imaging.
- CT scans on 12/1/16 showed interval increase in a posterior paraesophagal node and rerocrual
nodes – largest now 1.7 cm from 0.9.
- PET scan today shows concerning uptake in the paraesophageal node possibly c/w disease
progression - Will order EGD for a biopsy.
- Will add MRI of the brain to complete restaging"
What?
" - Hx of immune mediated pancreatitis- requiring HD steroid taper and hospitalization
- Multiple recurrent cu SCC- in the scalp and upper extremities
Reviewed scans with patient and spouse. If biopsy c/w metastatic melanoma, we would recommend
starting therapy with pembrolizumab off protocol. Patient will RTC after biopsy to finalize tx plan. He
agrees with plan of care and will call us with any questions or concerns
Diagnosis : Metastatic disease (adrenal, lung and liver).
Clinical Impression of Disease (since last visit) : Progressive Disease."
Too much medical information to absorb. Apologies.
I was thought to have more metastatic melanoma. In my esophagus and deep in my stomach. In my adrenal glands. In my lung. In my liver. Progressive disease, said she. What the fuck, said I.
I thought I was done with all this. Things were to be better. Dr. Weber had told me that I was cured, and suggested that I would die. Sometime in the future. But not now, and not from melanoma.
This, my friends, was a tough meeting. The conflict of rage and sadness was tearing me apart. So long, I had fought. So little time I was given to celebrate my good fortune. I was unable to express this to the doctor. They might have had to escort me out. Through all the years, between diagnosis and cure, I had always been pragmatic. But, for a brief few months, I had lived with a hope and an enthusiasm, that I had not felt for years.
I was crushed. Beaten. Hopeless.
We headed home, despondent, to Fort Myers. A new year was 48 hours away.
The insanity continues next week.
Until then.........
I thought I was done with all this. Things were to be better. Dr. Weber had told me that I was cured, and suggested that I would die. Sometime in the future. But not now, and not from melanoma.
This, my friends, was a tough meeting. The conflict of rage and sadness was tearing me apart. So long, I had fought. So little time I was given to celebrate my good fortune. I was unable to express this to the doctor. They might have had to escort me out. Through all the years, between diagnosis and cure, I had always been pragmatic. But, for a brief few months, I had lived with a hope and an enthusiasm, that I had not felt for years.
I was crushed. Beaten. Hopeless.
We headed home, despondent, to Fort Myers. A new year was 48 hours away.
The insanity continues next week.
Until then.........
https://www.jrobinmullen@gmail.com
Comments
Post a Comment