Headfirst Into Summer, 2014
In My Bloodstream: Back to Normal Stuff, lisinopril and omeprozole.
On The Stereo: Once In A Lifetime, Talking Heads
Update Monday
Received a phone call last Tuesday the 27th, from Dr. Harrington. He had just received the pathology from our last surgery.
As you might recall, each of the last three head surgeries have been to remove in situ melanoma, and the second biopsy had shown a melanoma tumor, which had not been expected. The margins of that excision had also shown residual melanoma, and this last operation was to take another swath to hopefully find clean margins. Kathy, the surgeon, and I, had all suspected there might be no end to the in situ melanoma, typically caused by extensive sun damage. I had worked and played outside for almost twenty years and never thought of wearing a hat. I earned this cancer. No doubt.
The doctor told me the margins were clean. Like Columbus finally finding land. That kind of long shot.
We have agreed to meet, the doctor and I, in January, to discuss another skin graft. The surgeries with the integra dressings will heal eventually, over a protracted period of time. He has concerns, not so much about the final appearance of my head, but regarding the length of time I will have open and healing wounds. Kath and I will take our time deciding.
It is coincidental that I am in the middle of the AVM story, which occurred in 2013, and the reparation that was done the following year. Groundhog Day. Presumably you have seen the movie.
Some photos of this story are unsettling and I am hesitant to even show them. However, I have decided that I will. There are many who have suffered as bad or worse. If you, or your friends, can see what can be done, over time, to take you from what was to what is, then the decision is correct. Please do not view them if you are the least bit queasy.
Our weekend was made better by visits from the Matsons, Frenches, Hannas and calls from Gerry Smith, Mark Burris, the Duggans, the Van Fossens and Kristin.
And by the way, Roll Tide. What a Saturday for Alabama. Madness in Tuscaloosa.
Our weekend was made better by visits from the Matsons, Frenches, Hannas and calls from Gerry Smith, Mark Burris, the Duggans, the Van Fossens and Kristin.
And by the way, Roll Tide. What a Saturday for Alabama. Madness in Tuscaloosa.
Back to July, 2014.
We had escaped the hospital on July third. I was a hot mess as we say in the south. I had drainage tubes to catch the goop spewing from my head. Blood was flowing freely from my leg and, interestingly, most of the more severe pain emanated from my leg, the donor site. The head wound was sore, no doubt, but not as sharp. I had one oxycodone in the hospital and and two Arthritis Tylenol at 6 pm, and at bedtime, Kath gave me another oxy, as well as some antibiotic pills. It had been a hellish two days. Blood and pain. At times like these one does wonder if the right decision had been made. Not much seems worth it. Honestly.
We basically stayed on the same regimen for the next few days. There was no comfort to be found. My friend Dave rolled his recliner down the street and dragged it in to our living room, so that I could sit and keep my leg elevated. He visited every day and tried to bolster my dwindling spirits. Pain was wearing me down. I refused additional opioids, which might have made sense. In retrospect, I probably should have done anything to find some relief. I had been prescribed one pill every four hours, if I had pain. I was taking one a day. And the pain was precariously close to being absolutely intolerable. Not much could compare.
On the 7th, we drove back to Moffitt. That was fun. (Sarcasm, in case you're not sure). I was almost in tears just getting to the car, let alone trying to squeeze in after getting there. Dr. Harrington removed my drainage tube and changed the dressing on my leg. Pulling adhesive bandage from a significant, raw wound, was not something I would wish on anyone. It felt like the skin was being ripped off my thigh. (Which, in fact, had already been done). This was my third time and it does not get easier. In fact, the memory of the others, made it worse. We do what we must.
We were advised to put vaseline on the raw leg and he fashioned a cap from gauze to cover my head. He continually glanced at the piece of flesh he had attached to the front of my head. He said it looked terrible. He said he would fix it after I had a chance to heal. At that juncture he had been able to get blood flow back to the graft, and that had been critical. The fact he was critical of his own work did not help me appreciate my new appearance. I would never be called adorable again.
On the 9th, Dr. Tran called again. Infectious disease techs had determined the specific infection and he prescribed a different antibiotic than I had been taking.
On the 11th we were at Moffitt for my trial routine. Dr. Weber had his first look at me since the operation. He thought my head was pretty hideous. He said I should start wearing a soft cap. And always wear it. Thanks. Everybody has to be a comedian. Anyway I was not missing a beat on my infusions. My cancer was receding and my head was now a joke.
Happy birthday to me. It was July 21st, and I was back at Moffitt to have my stitches removed. The healing skin on my graft continually broke open with every movement of my leg. That began soon after the operation and continued. That pain had a purpose . It took my mind off my ridiculous head.
On August 1st, our daughter, Stephanie came to visit from Seattle and Rose came from Toronto. It was uplifting to have them with us for a few days. I was not ambulatory by any means and wore a gauze yarmulke. No disrespect to my Jewish friends. At least, for a short period, with some additional family around, Kathy had some help and support. At a minimum, they could encourage her to remain "chipper".
That entire year, we had struggled with the clinical trial and its horrendous side effects. Out of nowhere I suffered an AVM. We survived that, only to find the site infected. The wound had broken open and my head shone with the glint off metal screws. My surgeon had ignored the entire issue. And now we struggled with leg and head trauma. My poor bride should have run for the hills.
But she did not.
Reminder of AVM 2013
July 2nd repair - a year later
Right thigh donor site
Unable to attach forehead wound site.
Home on Davy's chair with the Child Bride
Friends provide sushi nourishment
Forehead long after bandages removed
If you wish to comment, that option is available only on the actual website, not on the email version.
Hang in. Christmas is on its way. We'll talk next week.
We basically stayed on the same regimen for the next few days. There was no comfort to be found. My friend Dave rolled his recliner down the street and dragged it in to our living room, so that I could sit and keep my leg elevated. He visited every day and tried to bolster my dwindling spirits. Pain was wearing me down. I refused additional opioids, which might have made sense. In retrospect, I probably should have done anything to find some relief. I had been prescribed one pill every four hours, if I had pain. I was taking one a day. And the pain was precariously close to being absolutely intolerable. Not much could compare.
On the 7th, we drove back to Moffitt. That was fun. (Sarcasm, in case you're not sure). I was almost in tears just getting to the car, let alone trying to squeeze in after getting there. Dr. Harrington removed my drainage tube and changed the dressing on my leg. Pulling adhesive bandage from a significant, raw wound, was not something I would wish on anyone. It felt like the skin was being ripped off my thigh. (Which, in fact, had already been done). This was my third time and it does not get easier. In fact, the memory of the others, made it worse. We do what we must.
We were advised to put vaseline on the raw leg and he fashioned a cap from gauze to cover my head. He continually glanced at the piece of flesh he had attached to the front of my head. He said it looked terrible. He said he would fix it after I had a chance to heal. At that juncture he had been able to get blood flow back to the graft, and that had been critical. The fact he was critical of his own work did not help me appreciate my new appearance. I would never be called adorable again.
On the 9th, Dr. Tran called again. Infectious disease techs had determined the specific infection and he prescribed a different antibiotic than I had been taking.
On the 11th we were at Moffitt for my trial routine. Dr. Weber had his first look at me since the operation. He thought my head was pretty hideous. He said I should start wearing a soft cap. And always wear it. Thanks. Everybody has to be a comedian. Anyway I was not missing a beat on my infusions. My cancer was receding and my head was now a joke.
Happy birthday to me. It was July 21st, and I was back at Moffitt to have my stitches removed. The healing skin on my graft continually broke open with every movement of my leg. That began soon after the operation and continued. That pain had a purpose . It took my mind off my ridiculous head.
On August 1st, our daughter, Stephanie came to visit from Seattle and Rose came from Toronto. It was uplifting to have them with us for a few days. I was not ambulatory by any means and wore a gauze yarmulke. No disrespect to my Jewish friends. At least, for a short period, with some additional family around, Kathy had some help and support. At a minimum, they could encourage her to remain "chipper".
That entire year, we had struggled with the clinical trial and its horrendous side effects. Out of nowhere I suffered an AVM. We survived that, only to find the site infected. The wound had broken open and my head shone with the glint off metal screws. My surgeon had ignored the entire issue. And now we struggled with leg and head trauma. My poor bride should have run for the hills.
But she did not.
Reminder of AVM 2013
July 2nd repair - a year later
Unable to attach forehead wound site.
Home on Davy's chair with the Child Bride
Friends provide sushi nourishment
Forehead long after bandages removed
If you wish to comment, that option is available only on the actual website, not on the email version.
Hang in. Christmas is on its way. We'll talk next week.
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