Went to LRCC this morning for my Radiation Simulation. That's where the radiologist's team determines how I'll be positioned on the table, take measurements, and create the mask that will keep me still during treatment.
Dr. Guerrier had already gotten the report from the PET scan from Wednesday and had both Good and Might Be Bad news. The Good news: no distant metastases to my torso and legs -- clean as a whistle. There was also a small spot on my right neck that looked suspicious, but that was somewhat expected. It may be a reaction from the surgery, or a little bit of MCC that the surgery missed. Not a big deal; that's why I'm getting radiation in the first place. The Might Be Bad news: a small spot lit up under my mouth on my LEFT side. Those paying attention to the story will remember that my MCC was on the RIGHT face and neck. The right and left face drain separately, so there shouldn't be any mixing between the separate lymph node beds on the right and left side.
What does this mean? All the image shows is a "hot" lymph node, nothing about its contents or constitution. It could be that the spot on the left is a simple reaction from the surgery. Dr. Guerrier says that it's not uncommon for nearby lymph nodes to react to surgery, in which case it's nothing to be concerned about. It could be a small but growing metastasis from the MCC on the right, but it's vary rare for a tumor on one side of the face to metastasize over to the other. But then, MCC is a rare cancer. And it's rare for a 17 year old for to have renal failure. And it's rare for a transplant from 1979 to last 25 years. I'm willing to bet that I can pull off this rarity too, so Dr. Guerrier wants me have it biopsied.
Dr. Guerrier and I toyed with the idea of having Dr. Reintgen, my original surgeon try to biopsy this spot, but after Dr. Guerrier called Dr. Reintgen, they decided surgical biopsy wasn't a good idea because the spot is small and deep and it's not palpable, The surgeon would essentially be digging blindly in my neck. Dr. Guerrier decided on an ultrasound guided biopsy that can be done nearby. Everyone knows how much I love having long needles shoved into my neck, so I jumped at the chance. The results of the biopsy will affect how I get irradiated.
Dr. Guerrier could go ahead and plan my radiation around both sides of my neck, but if the new spot isn't malignant that would expose me to extra radiation needlessly. If the biopsy turns out negative, she can plan for just my right face and neck. If the biopsy turns out positive, they need to determine how positive it is (and the doctors in the audience are cringing at my terminology now) to see if it warrants further surgery,. If it does, Dr. Reintgen will be called in to craft another hole in the left side of my neck to remove lymph nodes. If doesn't warrant surgery, Dr. Guerrier can modify her radiation plan to also include the spot in left side of my neck too.
Having worked with computers and software for the last 25 years, I can't resist putting it this way:
IF biopsy = negative {
radiationPlan = right face and neck;}
ELSE {
IF biopsy very positive {
surgery = yes;
radiationPlan = right face and neck AND left face and neck;
modifyPlan = include surgery;}
ELSE {
surgery = no;
radiationPlan = right face and neck AND left face and neck;
modifyPlan = include no surgery;}
ENDIF }
ENDIF
I feel better now.
Another reason Dr. Guerrier is waiting on the biopsy is that any possible surgery will change the landscape inside my neck, moving all the lymph nodes and nerves and muscles around. I haven't asked, but I think she plans her radiation fields on the order of millimeters or smaller. If she plans for the tumor site to be in one spot and surgery moves it even just a little, she won't be able to deliver an effective dose of radiation where I need it and some other innocent bystander tissue will get it instead. She uses the term "respect the surrounding tissue" which I think is an excellent way to phrase it.
After we decided to do the biopsy, we went over the scary form that lists all the possible side effects of my treatment. I learned a long time ago reading drug package inserts that if you take them at face value, you'd rather have the disease rather than the drug that cures it. A nurse explained to me that drug companies put anything and everything down that could possibly happen so their legal backside is covered. Even if it happens to only one person, it gets listed. Today I learned that I may lose the ability to swallow, have a permanent sore throat, permanent dry mouth, hoarseness, jaw stiffness, blindness, loss of taste, loss of hearing, and poor gas mileage (I made that last one up). The alternative of course is to die of MCC, so I signed the form.
Here's what you're in for...
This is a chronicle of my experiences, observations, and feelings as I experience treatment for Merkel Cell Carcinoma (MCC). The goal is to give anyone going through chemotherapy and radiation for MCC (or any other cancer for that matter) an idea of what to expect. Of course I'm a unique individual just like everyone else, so what happens to me may or may not happen to you. Your mileage may vary.
I'm a pretty reserved guy, so most of these posts will be straightforward, just-the-facts-ma'am entries. I may occasionally get maudlin, but cut me some slack -- I could die from this.
Friday, December 31, 2010
Wednesday, December 29, 2010
The PET Scan
After the visit with Dr. Sondak, I went home to not have lunch before leaving again for the PET scan. In order to not interfere with the uptake of the radioactive sugar,
patients must have as little "natural" sugar in their bodies as
possible, hence the reason for a spartan breakfast and not having
lunch. I had only a half piece of wheat toast with peanut butter since
6:30 that morning.
PET scans work by injecting a radioactive tracer (a glucose molecule and radioactive isotope, usually fluorodeoxyglucosem or FDG to those in the know) into the body and waiting for the tracer to be consumed by the various tissues and organs. Once consumed, the tracer decays causing all sorts of subatomic commotion which the scanner picks up and uses to magically create images of your innards.
The hungrier the tissue, the more tracer it will consume. Tumors fall into the category of hungry and typically consume more sugar than its surrounding tissue. This shows up as a dark spot on the image. If the doctor sees any dark spots where they shouldn't be, it's an indication of something, like a tumor, that shouldn't be there.
The PET machine I went to is installed on a trailer (like a semi truck trailer) that is moved from site to site. Today it was scheduled to be at LRCC. This has got to be the most intelligent use of medical technology in the world. Here's a huge and hugely expensive peice of equipment that's available to nearly any medical facility that needs it! Sure, it doesn't cost peanuts to rent the thing, but I'm sure it's less expensive than buying and maintaining one which puts in reach of more doctors and patients.
Once inside the trailer, I answered the standard litany of medical questions (and always "Are you pregnant?" Haven't they caught on by now?) and added that I had four kidneys -- two native, one scarred non functioning transplant, and a functioning transplant. The PET tech was glad I mentioned it so the doctor who interprets the images wouldn't scratch his head too long about the misplaced kidneys.
Then I was injected with the tracer, similar to a blood draw except that stuff went in instead of out, We chatted about ice hockey, knee surgery, boxing, Lou Gherig's disease and the wonders of modern medical technology while we waited for tracer to insinuate itself into my molecules.
After the proper amount of time, about 30 minutes, I was led to the PET machine. If you've had a CT scan, there will be no surprises, in fact, newer machines have a CT scanner built in. First, I lay down on the scanner's movable table with my legs pointed toward the machine. It took about 15 minutes to scan my legs, then I was flipped around head first into the machine to scan my torso. That took about 25 minutes; I may even have fallen asleep. The process start to finish took about an hour and half, including checking in at the front desk.
On the way out of the trailer, I got to look at my images on the machine's computer monitor, and the thing that struck me most was my huge liver! It looked so much larger in relation to my body than anything I had ever seen in books. The tech said there was no problem, but wow! I learn something new about myself every day. I'll get the official read on the images in a few days.
Note to those considering a PET scan: Don't wear clothes with embedded metal such as my favorite pair of jeans. The rivets in the jeans would have interfered with images and I was given a hospital gown to wear during the procedure.
PET scans work by injecting a radioactive tracer (a glucose molecule and radioactive isotope, usually fluorodeoxyglucosem or FDG to those in the know) into the body and waiting for the tracer to be consumed by the various tissues and organs. Once consumed, the tracer decays causing all sorts of subatomic commotion which the scanner picks up and uses to magically create images of your innards.
The hungrier the tissue, the more tracer it will consume. Tumors fall into the category of hungry and typically consume more sugar than its surrounding tissue. This shows up as a dark spot on the image. If the doctor sees any dark spots where they shouldn't be, it's an indication of something, like a tumor, that shouldn't be there.
The PET machine I went to is installed on a trailer (like a semi truck trailer) that is moved from site to site. Today it was scheduled to be at LRCC. This has got to be the most intelligent use of medical technology in the world. Here's a huge and hugely expensive peice of equipment that's available to nearly any medical facility that needs it! Sure, it doesn't cost peanuts to rent the thing, but I'm sure it's less expensive than buying and maintaining one which puts in reach of more doctors and patients.
Once inside the trailer, I answered the standard litany of medical questions (and always "Are you pregnant?" Haven't they caught on by now?) and added that I had four kidneys -- two native, one scarred non functioning transplant, and a functioning transplant. The PET tech was glad I mentioned it so the doctor who interprets the images wouldn't scratch his head too long about the misplaced kidneys.
Then I was injected with the tracer, similar to a blood draw except that stuff went in instead of out, We chatted about ice hockey, knee surgery, boxing, Lou Gherig's disease and the wonders of modern medical technology while we waited for tracer to insinuate itself into my molecules.
After the proper amount of time, about 30 minutes, I was led to the PET machine. If you've had a CT scan, there will be no surprises, in fact, newer machines have a CT scanner built in. First, I lay down on the scanner's movable table with my legs pointed toward the machine. It took about 15 minutes to scan my legs, then I was flipped around head first into the machine to scan my torso. That took about 25 minutes; I may even have fallen asleep. The process start to finish took about an hour and half, including checking in at the front desk.
On the way out of the trailer, I got to look at my images on the machine's computer monitor, and the thing that struck me most was my huge liver! It looked so much larger in relation to my body than anything I had ever seen in books. The tech said there was no problem, but wow! I learn something new about myself every day. I'll get the official read on the images in a few days.
Note to those considering a PET scan: Don't wear clothes with embedded metal such as my favorite pair of jeans. The rivets in the jeans would have interfered with images and I was given a hospital gown to wear during the procedure.
The Second Opinon
Leslye and I drove over to Moffitt Cancer Center in Tampa this morning to see Dr. Sondak. After checking in, I was first met by Chris the Physician's Assistant who did a splendid job of explaining disease free survival rates and overall survival rates. I understood the terms correctly: if a person is expected to live 5 more years, his overall survival rate is 5 years. If he spends the first 4 of those years without being dogged by cancer, his disease free survival rate is 4 years. Chris emphasised not to get stressed out by numbers. Given an overall five year survival rate of say 50%, out of 200 people there's no way to predict which 100 will still be alive after 5 years. Like driving to the grocery store, there's a statistic that says a certain percentage of us will be involved in an accident, but it doesn't stop us from getting groceries. The most important thing he said was that rare doesn't automatically mean bad - there's reasonable hope in treating MCC. It was the most comforting thing I've heard in a long time.
After Chris did some perfunctory pokes and prods and questions, Dr. Sondak came in. He had read my op reports, pathology reports and history and agreed with what had been recommended. He said that because I was at Stage III (carcinoma had entered the lymph nodes), radiation was a given. Because I'm still young (!) chemotherapy is indicated because the risks versus the benefits in my case were small, meaning in the long run, chemo will do me more good than harm.
Basically, Dr. Sondak saw no compelling reason to receive treatment at Moffitt as opposed to LRCC. LRCC is well equipped, has state-of-the-art equipment and has a good track record. I left his office feeling good about what he said and am glad I'm able to receive treatment closer to home.
For those who want to consult with Dr. Sondak, it's important that any biopsies be analyzed by HIS pathologist at Moffitt. I didn't get a name, but this pathologist is an expert at determining MCC cancer and Dr. Sondak won't use anyone else. I was just lucky that my surgeon Dr. Reintgen uses the same pathologist.
Young. I get more and more suprised every year I hear that.
After Chris did some perfunctory pokes and prods and questions, Dr. Sondak came in. He had read my op reports, pathology reports and history and agreed with what had been recommended. He said that because I was at Stage III (carcinoma had entered the lymph nodes), radiation was a given. Because I'm still young (!) chemotherapy is indicated because the risks versus the benefits in my case were small, meaning in the long run, chemo will do me more good than harm.
Basically, Dr. Sondak saw no compelling reason to receive treatment at Moffitt as opposed to LRCC. LRCC is well equipped, has state-of-the-art equipment and has a good track record. I left his office feeling good about what he said and am glad I'm able to receive treatment closer to home.
For those who want to consult with Dr. Sondak, it's important that any biopsies be analyzed by HIS pathologist at Moffitt. I didn't get a name, but this pathologist is an expert at determining MCC cancer and Dr. Sondak won't use anyone else. I was just lucky that my surgeon Dr. Reintgen uses the same pathologist.
Young. I get more and more suprised every year I hear that.
Tuesday, December 28, 2010
A Second Opinon Is Important, Even If It Isn't Your Wife's
Today was a big day, lots of stuff accomplished. Made appointments for my PET scan and MRI and got some stuff faxed to Dr. Nghiem.
Before Christmas, I faxed my Informed Consent and HIPAA papers to Dr. Nghiem for his tissue bank and during the follow up phone call offered to fax more complete information about my medical condition. I'm the sort that will throw everything I've got at you and let you sort out the important parts, rather then accidentally omit something you need. My "med pak" contains a list of all my operations, my current meds, and a summary of whatever it is causing my visit. If you want to see medical personnel smile, hand them one of these. Their faces light up like a Christmas tree when they get actual history they can hold in their hands.
After my surgery to remove the MCC tumor and affected lymph nodes, the surgeon recommended two doctors, a medical oncologist and a radiation oncologist for follow up treatment to remove (or at least reduce) the microscopic bits of MCC that may still be at the primary site.
The MO has recommended a course of chemotherapy with either cisplatin or carboplatin. The reasoning behind chemo was disquieting. Chemo hasn't been proven to increase survival rates, but there is evidence (there's that uncertainty stuff again!) that it improves disease free survival. Not quite sure what that means, but it sounds like they're saying that if they knew for sure I had only 6 years to live, chemo will keep me MCC-free for 5 years as opposed to having to endure it for the last 4 years of my life.
I'm still learning exactly what chemo does against cancer, but from my scant reading, I favor carboplatin because if its lower side effect profile. As plus, I was informed by my dermatologist this morning that carboplatin is also effective against squamous cell carcinoma which plagues me greatly. Huzzah! I may never have to go back to the dermatologist again! Given that carboplatin stands to be effective against MCC and SCC, it gets my vote.
I noted my visits to the fine folk at the merkel cell cancer group and they encouraged me to get a second opinion. As luck would have it, there is a regional expert near me in Tampa, Florida at the H. Lee Moffitt Cancer Research Center, Dr. Vernon Sondak. Tomorrow morning, my wife and I will consult with him to learn his opinion of the treatment recommended by the MO and RO, and especially his opinion of chemo.
Regardless of Dr. Sondak's opinion of chemo, I will undergo radiation treatments. Lakeland Regional Cancer Center has an IMRT (Intensity Modulated Radiation Therapy) machine that's used to precisely deliver radiation to specific spot. The favorite analogy explaining the difference between standard RT and IMRT compares using a single powerful flashlight to illuminate a small picture on a wall as opposed to using several smaller flashlights aimed at different angles to point at the same picture. The powerful flashlight will light up the picture, but also most of the wall too. The smaller flashlights added together will provide the same amount of light on the picture, but without as much spillage. Substitute "tumor" for picture, "damage" for spillage, and "rest of my body" for wall, and you'll understand the advantages of this technology.
In order to precisely aim all these radioactive flashlights, the RO needs to know what's inside my head and she'll learn this by using a using a PET scan and an MRI. I never realized how much work went into planning a course of radiation. I figured it wasn't much more complicated than sitting next to a chunk of uranium for awhile, and all the radiologist did was determine how long to sit. Oh, how ignorant I was! Seems that hitting the tumor is the easy part -- the real skill is planning the RT to avoid hitting the good parts like nerves and other non-malignant tissue. For instance, my RT will be directed to the right face and right neck. Easy enough to do, but how to avoid destroying the nerves and muscles that control swallowing? My voice? My optic nerves?
So after my appointment with Dr. Sondak in the tomorrow morning, I'll show up at the imaging center for a PET scan (which will also be useful to the MO to see if there are any other MCC mets hiding). PET scans are serious stuff. I've been ordered to eat or drink nothing during the six hours before the scan - not even a drink of water. No gum, no mints, no tobacco, no brushing of teeth. Apparently stray sugar metabolism is a big deal. Since the scan is in the afternoon, I'm allowed a light breakfast (but no carbohydrates!) before 8:00 in the morning. Afterwards, I'm supposed to drink lots and lots of water and stay at least 6 feet away from pregnant women and small children for 24 hours. No mention of small animals, but to be safe, the cats are going to have to find another place to sleep tomorrow night.
Before Christmas, I faxed my Informed Consent and HIPAA papers to Dr. Nghiem for his tissue bank and during the follow up phone call offered to fax more complete information about my medical condition. I'm the sort that will throw everything I've got at you and let you sort out the important parts, rather then accidentally omit something you need. My "med pak" contains a list of all my operations, my current meds, and a summary of whatever it is causing my visit. If you want to see medical personnel smile, hand them one of these. Their faces light up like a Christmas tree when they get actual history they can hold in their hands.
After my surgery to remove the MCC tumor and affected lymph nodes, the surgeon recommended two doctors, a medical oncologist and a radiation oncologist for follow up treatment to remove (or at least reduce) the microscopic bits of MCC that may still be at the primary site.
The MO has recommended a course of chemotherapy with either cisplatin or carboplatin. The reasoning behind chemo was disquieting. Chemo hasn't been proven to increase survival rates, but there is evidence (there's that uncertainty stuff again!) that it improves disease free survival. Not quite sure what that means, but it sounds like they're saying that if they knew for sure I had only 6 years to live, chemo will keep me MCC-free for 5 years as opposed to having to endure it for the last 4 years of my life.
I'm still learning exactly what chemo does against cancer, but from my scant reading, I favor carboplatin because if its lower side effect profile. As plus, I was informed by my dermatologist this morning that carboplatin is also effective against squamous cell carcinoma which plagues me greatly. Huzzah! I may never have to go back to the dermatologist again! Given that carboplatin stands to be effective against MCC and SCC, it gets my vote.
I noted my visits to the fine folk at the merkel cell cancer group and they encouraged me to get a second opinion. As luck would have it, there is a regional expert near me in Tampa, Florida at the H. Lee Moffitt Cancer Research Center, Dr. Vernon Sondak. Tomorrow morning, my wife and I will consult with him to learn his opinion of the treatment recommended by the MO and RO, and especially his opinion of chemo.
Regardless of Dr. Sondak's opinion of chemo, I will undergo radiation treatments. Lakeland Regional Cancer Center has an IMRT (Intensity Modulated Radiation Therapy) machine that's used to precisely deliver radiation to specific spot. The favorite analogy explaining the difference between standard RT and IMRT compares using a single powerful flashlight to illuminate a small picture on a wall as opposed to using several smaller flashlights aimed at different angles to point at the same picture. The powerful flashlight will light up the picture, but also most of the wall too. The smaller flashlights added together will provide the same amount of light on the picture, but without as much spillage. Substitute "tumor" for picture, "damage" for spillage, and "rest of my body" for wall, and you'll understand the advantages of this technology.
In order to precisely aim all these radioactive flashlights, the RO needs to know what's inside my head and she'll learn this by using a using a PET scan and an MRI. I never realized how much work went into planning a course of radiation. I figured it wasn't much more complicated than sitting next to a chunk of uranium for awhile, and all the radiologist did was determine how long to sit. Oh, how ignorant I was! Seems that hitting the tumor is the easy part -- the real skill is planning the RT to avoid hitting the good parts like nerves and other non-malignant tissue. For instance, my RT will be directed to the right face and right neck. Easy enough to do, but how to avoid destroying the nerves and muscles that control swallowing? My voice? My optic nerves?
So after my appointment with Dr. Sondak in the tomorrow morning, I'll show up at the imaging center for a PET scan (which will also be useful to the MO to see if there are any other MCC mets hiding). PET scans are serious stuff. I've been ordered to eat or drink nothing during the six hours before the scan - not even a drink of water. No gum, no mints, no tobacco, no brushing of teeth. Apparently stray sugar metabolism is a big deal. Since the scan is in the afternoon, I'm allowed a light breakfast (but no carbohydrates!) before 8:00 in the morning. Afterwards, I'm supposed to drink lots and lots of water and stay at least 6 feet away from pregnant women and small children for 24 hours. No mention of small animals, but to be safe, the cats are going to have to find another place to sleep tomorrow night.
Thursday, December 23, 2010
Let's catch up here
Note: This blog was started about a month AFTER I had been diagnosed with MCC. This initial post is supposed to bring everyone up to speed with my current posts. For now, I'm updating this little by little until it catches up with reality. Stick with it -- it'll all make sense one day.
I just started this blog and I'm already behind.
I first heard the word Merkel on November 16, 2010 during a phone call from my dermatologist reporting the results of a recent shave biopsy. Since then I've already had surgery, consulted with a medical oncologist, a radiation oncologist, and learned that I'll probably be getting radiation and chemotherapy.
This first, very long post is an attempt to give explain and give a background for everything that's happened up until the current posts start.
My MCC was diagnosed from a skin biopsy taken around the beginning of November 2010. It was in the same spot where I had a squamous cell carcinoma (SCC) excised back in February of the same year. Why the excision of the SCC? For that, we need to go back even further.
My first kidney transplant was performed in November of 1978, back when the earth's crust was still warm. It lasted only about 6 weeks before rejection caused the graft to fail and hemorrhage leaving me on dialysis. The rejection episode even blew out some kind of artery in my right leg that kept me in bedridden for nearly a week. It was a big deal. On October 15, 1979, I received my second transplant which was an qualified success. It lasted a full 24 years before it began to gradually decline because of chronic rejection. On July 8, 2005, a few weeks after it I became medically eligible to dialyze, I received my third transplant (thanks Bruce!) which continues to function beautifully to this day. I think I've finally gotten this transplant thing down.
So why am I bothering you with transplants? Because for the last 32+ years, I've had a suppressed immune system that allowed my body to host a foreign object (someone else's kidney) that kept me alive and essentially normal, but also made me more susceptible to infections and cancer. Additionally, the drugs available for transplants back in '79 were not particularly kind to the skin, making me even more susceptible to skin cancer. Oh, and since I was 18 when all this started, I was immortal and not really careful about sun exposure for the first few years of transplantation.
So from here on out, there will be minimal mention of kidney transplants except as related to immunosupression and the consequences thereof.
About 15 years into my 2nd transplant, I had my first Basal Cell Carcinoma removed. My primary doctor thought it was a wart, kept freezing it, but it wouldn't go away. I was recommended a dermatologist who naturally did a biopsy and determined that it was a BCC. To him, not a big deal, but to me, it was like boulder had dropped on my chest. Ever since the first transplant, I had been told that I was more susceptible to cancer, but like most of us, I thought it would never happen to me. Now I had been officially diagnosed with Cancer.
The BCC was excised and I made it a point to notice new lumps and bumps and growths on my skin and take them to a doctor. I can't say I got complacent, but I was lulled by the statistics: BCCs and SCCs are the most common form of skin cancer, are slow growing, and are highly treatable; hardly anyone dies of them and I'm seen pretty regularly by a doctor anyway, so I'll catch them before they get out of hand. I figured as long as I was vigilant and stayed out of the sun, I'd only be inconvenienced by dermatology appointments and some pain going through the actual excisions. The thought of something like MCC screaming in from out of the blue never occurred to me.
The BCCs and SCCs started ramping up around 2000, and later on, I was getting at least four or five excisions done every year. Because of changes in insurance plans, I've had several dermatologists over the years and have lost track of how many excisions I've had, but I know for a fact that I've had over 50 excisions done by my current dermatologist. I can't begin to count the number precancers and suspicious stuff they've frozen off with liquid nitrogen. They have three fat volumes on me and I'm angling for my own parking spot.
Our strategy is for me to go in every few weeks for a skin check, and freeze the bejesus out of anything that even looks like it's thinking about turning into a cancer. The stuff that grows back gets biopsied, the stuff that's positive gets removed.
The frequency of my visits is what saved me. .
To be continued...
I just started this blog and I'm already behind.
I first heard the word Merkel on November 16, 2010 during a phone call from my dermatologist reporting the results of a recent shave biopsy. Since then I've already had surgery, consulted with a medical oncologist, a radiation oncologist, and learned that I'll probably be getting radiation and chemotherapy.
This first, very long post is an attempt to give explain and give a background for everything that's happened up until the current posts start.
My MCC was diagnosed from a skin biopsy taken around the beginning of November 2010. It was in the same spot where I had a squamous cell carcinoma (SCC) excised back in February of the same year. Why the excision of the SCC? For that, we need to go back even further.
My first kidney transplant was performed in November of 1978, back when the earth's crust was still warm. It lasted only about 6 weeks before rejection caused the graft to fail and hemorrhage leaving me on dialysis. The rejection episode even blew out some kind of artery in my right leg that kept me in bedridden for nearly a week. It was a big deal. On October 15, 1979, I received my second transplant which was an qualified success. It lasted a full 24 years before it began to gradually decline because of chronic rejection. On July 8, 2005, a few weeks after it I became medically eligible to dialyze, I received my third transplant (thanks Bruce!) which continues to function beautifully to this day. I think I've finally gotten this transplant thing down.
So why am I bothering you with transplants? Because for the last 32+ years, I've had a suppressed immune system that allowed my body to host a foreign object (someone else's kidney) that kept me alive and essentially normal, but also made me more susceptible to infections and cancer. Additionally, the drugs available for transplants back in '79 were not particularly kind to the skin, making me even more susceptible to skin cancer. Oh, and since I was 18 when all this started, I was immortal and not really careful about sun exposure for the first few years of transplantation.
So from here on out, there will be minimal mention of kidney transplants except as related to immunosupression and the consequences thereof.
About 15 years into my 2nd transplant, I had my first Basal Cell Carcinoma removed. My primary doctor thought it was a wart, kept freezing it, but it wouldn't go away. I was recommended a dermatologist who naturally did a biopsy and determined that it was a BCC. To him, not a big deal, but to me, it was like boulder had dropped on my chest. Ever since the first transplant, I had been told that I was more susceptible to cancer, but like most of us, I thought it would never happen to me. Now I had been officially diagnosed with Cancer.
The BCC was excised and I made it a point to notice new lumps and bumps and growths on my skin and take them to a doctor. I can't say I got complacent, but I was lulled by the statistics: BCCs and SCCs are the most common form of skin cancer, are slow growing, and are highly treatable; hardly anyone dies of them and I'm seen pretty regularly by a doctor anyway, so I'll catch them before they get out of hand. I figured as long as I was vigilant and stayed out of the sun, I'd only be inconvenienced by dermatology appointments and some pain going through the actual excisions. The thought of something like MCC screaming in from out of the blue never occurred to me.
The BCCs and SCCs started ramping up around 2000, and later on, I was getting at least four or five excisions done every year. Because of changes in insurance plans, I've had several dermatologists over the years and have lost track of how many excisions I've had, but I know for a fact that I've had over 50 excisions done by my current dermatologist. I can't begin to count the number precancers and suspicious stuff they've frozen off with liquid nitrogen. They have three fat volumes on me and I'm angling for my own parking spot.
Our strategy is for me to go in every few weeks for a skin check, and freeze the bejesus out of anything that even looks like it's thinking about turning into a cancer. The stuff that grows back gets biopsied, the stuff that's positive gets removed.
The frequency of my visits is what saved me. .
To be continued...
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