Thursday, October 22, 2015
Another Milestone
I had a PET scan done Tuesday. I returned to see my doctors today. We reviewed the scans and found no trace of MCC. I know the chances of recurrence are always out there but today I'm happy. We set a date for the next PET scan in 2016 and my appointments with my doctors. God blessed me today and I don't take this lightly. Wife and I had barbecue ribs tonight in celebration. My oncologist said I have woody edema of my right arm and I said great, now I don't need a bat to play baseball (LOL). God bless you all!
Monday, August 10, 2015
The Cure...Is it Worth It?
Its two weeks and then some since the last radiation treatment. The doctor says I'm a late bloomer. My skin reaction to the radiation didn't really begin until the last treatment. In the past I've been cut open on several occasions to make repairs or to take out defective parts. However, nothing compares to the twenty-four hour a day torment of radiation burns.
The process, tomorrow, will be to soak the affected area with a mix of peroxide and water for 20 minutes to soften the dead tissue and then to use tweezers to pull the dead skin off. Usually when the skin begins to bleed then the pull is stopped and begun in another area. By the way, there is no pain killer given during this process.
Tomorrow will be my sixth episode of skin removal and hopefully getting close to finishing.
Yes, this is gross. Yes, the pain at times is excruciating. However, if this makes someone think twice about getting a sun tan then I've accomplished my goal.
This is the point at which approximately 50% of the dead skin has been removed and only about 5% is still weeping plasma.
Tomorrow will be my sixth episode of skin removal and hopefully getting close to finishing.
Yes, this is gross. Yes, the pain at times is excruciating. However, if this makes someone think twice about getting a sun tan then I've accomplished my goal.
Tuesday, July 28, 2015
Pain ... It Really Does Hurt
This is the fourth night since the last radiation treatment. Even with pain killers and salves this wound is kicking my butt. Your prayers are greatly appreciated.
Thursday, July 23, 2015
Radiation Treatment # 28 Last Treatment Tomorrow
Today's trip to Oschner Hospital Clinic was number 27. Tomorrow's treatment will be the last radiation for this episode of Merkel Cell Carcinoma. We had a meeting with Dr. Scroggins after the treatment to discuss the future of treatments going forward.
I'll receive notice of a follow up appointment for a visit to take place in six weeks from today and he will schedule a PET scan for 3 months from today. So it looks like after tomorrow its going to take a couple of months of healing for the damaged skin from the radiation to get back to normal; whatever that will look like.
The pictures below are the ones taken after today's treatment. I have to say that the pain in the last week has been extraordinary. I don't know if I would have agreed to have this procedure if I had known the amount of pain radiation would cause. The skin is tight due to the swelling from the lymphodema. Its sort of like a soccer ball all aired up. The depth of the burn is much deeper than an ordinary sunburn would be. The pain is a cross between having my arm covered with wasps stinging me and laying my arm in a lit fireplace. Sometimes both at the same time. Fortunately I have pain medication that masks about 90% of the pain.
Well, I will revisit this blog as events warrant and try to keep it updated. If the Lord is willing this will be the end of Merkel Cell Carcinoma on the Bayou. If a future PET scan shows a tumor or a lesion should appear then I'll deal with it at that time. God bless you all!!
This is the fore arm showing the area where the lesion was removed.
This is an overhead picture of the forearm showing the swelling that has occurred due to the lymphodemia.
For comparison is a picture of my left forearm showing the normal skin.
This is the elbow from above showing the demarcation line between the radiated skin and the healthy skin.
This photo is of the inside of my right elbow. Doc says there are lymph nodes in the elbow that have to be targeted.
The radiation area stretches from under my chin to the side of my chest under my right armpit. From there it extends to my spine across my back then up to my neck. Then it radiates down my arm on the outside and back up the inside of my arm to the armpit. What you see here is about 30% of the radiation field.
Well, that's enough of a pity party for me. Thank you all for your prayers and with God's grace he may grant me more time to enjoy my family and friends for the future.
Saturday, July 18, 2015
Radiation Treatments Week V
We completed week five of radiation treatments yesterday. That's a total of 23 dosages of radiation. Monday begins the last week of treatments and I'm glad they will be over. After yesterday's treatment I was too tired to post anything. In fact I've spent the entire day today resting and trying to store up some energy. The first three weeks of treatments as expected were not too debilitating for me. A little fatigue had set in and there was no real pain to the area being treated.
With the start of the fourth week I began to experience real fatigue, dull aching over the entire site of radiation and some deep pain in my arm. Its two weeks later now and I'm worn down. Each week the time period of the radiation dosage has been increased by a few seconds. It started out in the first week at 5 seconds for the long dosage. I get four long doses to four different sites and two short doses to another two sites. The short duration doses have remained at 1 second for the entire period of treatments. However the long doses have steadily increased in duration and yesterday they lasted 30 seconds each. When I left the hospital my arm was a tinge of pink over the brown tan. I was lightheaded and too tired to walk more than a few feet at a time. The treated area was tingling and very sensitive to being touched.
Thursday's are scheduled for a visit with the radiologist every week so he can check me out and review the progress of my treatment. I like my doctor but sometimes not what he tells me. Thursday; day before yesterday as he was checking my burn area he said the tanning and discoloration of my arm was what he expected. He asked me about pain or any other complaints. I related to him how I felt and how the pain was during the week. He then tells me the treatments are proceeding as he expected and then says it will get worse this week.
I'm glad its the last week of treatments because more discomfort is not something I look forward to. I'll post pictures of the final skin changes after the final treatment this coming week.
With the start of the fourth week I began to experience real fatigue, dull aching over the entire site of radiation and some deep pain in my arm. Its two weeks later now and I'm worn down. Each week the time period of the radiation dosage has been increased by a few seconds. It started out in the first week at 5 seconds for the long dosage. I get four long doses to four different sites and two short doses to another two sites. The short duration doses have remained at 1 second for the entire period of treatments. However the long doses have steadily increased in duration and yesterday they lasted 30 seconds each. When I left the hospital my arm was a tinge of pink over the brown tan. I was lightheaded and too tired to walk more than a few feet at a time. The treated area was tingling and very sensitive to being touched.
Thursday's are scheduled for a visit with the radiologist every week so he can check me out and review the progress of my treatment. I like my doctor but sometimes not what he tells me. Thursday; day before yesterday as he was checking my burn area he said the tanning and discoloration of my arm was what he expected. He asked me about pain or any other complaints. I related to him how I felt and how the pain was during the week. He then tells me the treatments are proceeding as he expected and then says it will get worse this week.
I'm glad its the last week of treatments because more discomfort is not something I look forward to. I'll post pictures of the final skin changes after the final treatment this coming week.
Saturday, July 11, 2015
Cancer Lead Me Astray but Only for a Little While
No one wants to think of themselves in a negative way. I've always tried to be positive in my life and I believe for the most part that I've been successful. I wasn't going to delve into this but if I'm going to tell the whole story of Merkel Cell Carcinoma then I'm bound to reveal all that I can.
About six weeks ago I was picked up in an ambulance at my home mid afternoon on a Wednesday. I had been fighting chronic bronchitis since October of 2014. For me this wasn't unusual. For the past thirty years I develop chronic bronchitis as soon as the wind turns out of the North and brings different pollen and spores south with the clouds. Nothing new, just nose drizzles, coughing, sinus congestion and sneezing. Its the same every year so I don't worry about it. This year it began to clear up around January, a little ahead of my MCC diagnosis.
After my initial diagnosis it only took a few weeks before the chronic bronchitis returned. I assumed this recurred because of the MCC so I just medicated it and kept going. However, after the two surgeries it became more and more problematic. It became increasingly difficult for me to carry out daily activities and breathing became more difficult. I started to have breathing problems to the point where I felt that only half of my lungs were functioning. Finally on that Wednesday my wife was at work and my eight year old granddaughter was visiting me for the day.
I made my way to my recliner in the living room, sat down and knew that I was in trouble. I called my wife to come home and take me to the VA clinic so I could get an examination. I knew I had to go to the emergency room but I didn't want to panic my wife while she had to drive home. When she arrived home I told her to call for an ambulance.
Once at the hospital I received a battery of tests that revealed what they termed excessive volume overload of fluid in my lungs. Congestive Heart Failure was next on the list as well as Pulmonary Edema for the trifecta.
I remained in the hospital for four days and was released reluctantly by the doctors who were treating me. They had managed to remove 22 pounds of fluid from my body in four days and I was ready to go home. I now try to remain on a no sodium diet and follow all the restrictions they put on me.
Okay. The preceding information was to lead to this revelation. I'm human! I didn't accept the fact that cancer is serious for me. I'm an expert at concealing my emotions after 45 years of PTSD. What this episode revealed to me is that I may die from this cancer but I must live as well as I can for as long as I can.
I put myself in jeopardy. I ate continuously. I ate everything I could that was fried and the more the better. I skipped insulin doses and saw my sugar go to the 300 range. It didn't matter to me. My life was over so why bother. The effort to breathe was a shock to me when I realized I had done this to myself. I felt like a fish on a dock gasping for air in the full knowledge that I may not live much longer.
Well, I'm determined not to go through that again and am trying to manage my health as best I can. I believe it was the prayers of all those who call me friend, father, brother, dad that changed me. To God and their prayers I'm grateful.
When someone is diagnosed with cancer please watch their behavior and gently guide them to a healthy lifestyle if at all possible.
About six weeks ago I was picked up in an ambulance at my home mid afternoon on a Wednesday. I had been fighting chronic bronchitis since October of 2014. For me this wasn't unusual. For the past thirty years I develop chronic bronchitis as soon as the wind turns out of the North and brings different pollen and spores south with the clouds. Nothing new, just nose drizzles, coughing, sinus congestion and sneezing. Its the same every year so I don't worry about it. This year it began to clear up around January, a little ahead of my MCC diagnosis.
After my initial diagnosis it only took a few weeks before the chronic bronchitis returned. I assumed this recurred because of the MCC so I just medicated it and kept going. However, after the two surgeries it became more and more problematic. It became increasingly difficult for me to carry out daily activities and breathing became more difficult. I started to have breathing problems to the point where I felt that only half of my lungs were functioning. Finally on that Wednesday my wife was at work and my eight year old granddaughter was visiting me for the day.
I made my way to my recliner in the living room, sat down and knew that I was in trouble. I called my wife to come home and take me to the VA clinic so I could get an examination. I knew I had to go to the emergency room but I didn't want to panic my wife while she had to drive home. When she arrived home I told her to call for an ambulance.
Once at the hospital I received a battery of tests that revealed what they termed excessive volume overload of fluid in my lungs. Congestive Heart Failure was next on the list as well as Pulmonary Edema for the trifecta.
I remained in the hospital for four days and was released reluctantly by the doctors who were treating me. They had managed to remove 22 pounds of fluid from my body in four days and I was ready to go home. I now try to remain on a no sodium diet and follow all the restrictions they put on me.
Okay. The preceding information was to lead to this revelation. I'm human! I didn't accept the fact that cancer is serious for me. I'm an expert at concealing my emotions after 45 years of PTSD. What this episode revealed to me is that I may die from this cancer but I must live as well as I can for as long as I can.
I put myself in jeopardy. I ate continuously. I ate everything I could that was fried and the more the better. I skipped insulin doses and saw my sugar go to the 300 range. It didn't matter to me. My life was over so why bother. The effort to breathe was a shock to me when I realized I had done this to myself. I felt like a fish on a dock gasping for air in the full knowledge that I may not live much longer.
Well, I'm determined not to go through that again and am trying to manage my health as best I can. I believe it was the prayers of all those who call me friend, father, brother, dad that changed me. To God and their prayers I'm grateful.
When someone is diagnosed with cancer please watch their behavior and gently guide them to a healthy lifestyle if at all possible.
Friday, July 10, 2015
Week IV Radiation Treatments Complete or What they didn't tell me upfront!
Just returned from the hospital a while ago after completing radiation treatment #18. That makes four weeks down with two weeks to go or 10 more treatments. The technicians gave me a new surprise today, the dirty rats. I was happy to be ending this week's regime of travel and treatments.
As I lay on the treatment machine table waiting for the radiation treatment to begin I was thinking about what I'd like to do this weekend. The big donut swirled around to its position above my head to begin the treatment. Everything was as usual as the port on the radiation dispenser opened and the ray gun began its job.
Hmm, something didn't feel right. I began to feel an odd tingling sensation in the area being treated. The machine stopped at the end of the first dose and then reconfigured for the second dose further up my arm. As it began to hum with the second dose I could definitely feel the prickly sensation that had started with the first dose. Both of these doses lasted about 20 seconds. The machine made two more short one second blasts in different locations on the front side of my arm. When done the machine donut began to rotate around the table and the table begins to rise to a height of six feet above the floor. The radiation dispenser then has rotated until its under the table to send radiation to my arm and shoulder to my back.
I received two blasts of radiation as usual about 20 seconds long each. Well it wasn't business as usual. This time it initially felt like an electric shock all across my arm and right shoulder. As each 20 second episode goes on I can feel the heat rising where the dose is aimed. I was glad when the port closed on the machine.
The lead technician then walks into the treatment room and says "Hey we got you this time didn't we?" She began to lower the table to help me up and she tells me sorry, but they've been waiting for me to begin to feel the radiation. They were watching me on a monitor and saw me flinch when the two last doses were being delivered. They never know when the pain from the dosages delivered will be felt by an individual patient. So they don't say anything until the pain begins to be felt. Seems if you tell someone up front they make themselves sick in anticipation of the point of change/pain.
She says cheer up, there's good news and bad news. I said tell me. She says the good news is I have only ten more treatments over the next two weeks. The bad news is that the pain will get a little worse with each treatment.
So there it is. I sit here typing with my shoulder and arm aching looking forward to this for another two weeks. This has been and will continue to be an odessy of sorts as I deal with Merkel Cell Carcinoma.
As I lay on the treatment machine table waiting for the radiation treatment to begin I was thinking about what I'd like to do this weekend. The big donut swirled around to its position above my head to begin the treatment. Everything was as usual as the port on the radiation dispenser opened and the ray gun began its job.
Hmm, something didn't feel right. I began to feel an odd tingling sensation in the area being treated. The machine stopped at the end of the first dose and then reconfigured for the second dose further up my arm. As it began to hum with the second dose I could definitely feel the prickly sensation that had started with the first dose. Both of these doses lasted about 20 seconds. The machine made two more short one second blasts in different locations on the front side of my arm. When done the machine donut began to rotate around the table and the table begins to rise to a height of six feet above the floor. The radiation dispenser then has rotated until its under the table to send radiation to my arm and shoulder to my back.
I received two blasts of radiation as usual about 20 seconds long each. Well it wasn't business as usual. This time it initially felt like an electric shock all across my arm and right shoulder. As each 20 second episode goes on I can feel the heat rising where the dose is aimed. I was glad when the port closed on the machine.
The lead technician then walks into the treatment room and says "Hey we got you this time didn't we?" She began to lower the table to help me up and she tells me sorry, but they've been waiting for me to begin to feel the radiation. They were watching me on a monitor and saw me flinch when the two last doses were being delivered. They never know when the pain from the dosages delivered will be felt by an individual patient. So they don't say anything until the pain begins to be felt. Seems if you tell someone up front they make themselves sick in anticipation of the point of change/pain.
She says cheer up, there's good news and bad news. I said tell me. She says the good news is I have only ten more treatments over the next two weeks. The bad news is that the pain will get a little worse with each treatment.
So there it is. I sit here typing with my shoulder and arm aching looking forward to this for another two weeks. This has been and will continue to be an odessy of sorts as I deal with Merkel Cell Carcinoma.
Thursday, July 9, 2015
Changes II Sun Tan
We finished the Wednesday radiation session yesterday afternoon and I'm up late tonight, well actually Thursday morning, trying to get enough courage to go to bed and try to get some sleep. I have 12 more treatments to go through so I 'm posting these photos of my forearm as a reference point a little more than halfway through these treatments.
This is a view of the top of my right forearm. There appear to be a lot of freckles on my arm that were not there before. Under a magnifying glass inspection I discovered that each of the new brown spots were in fact burnt skin spots that were turning into small boils.
This is a side view of my right forearm showing the scar from the tumor removal site. There are patches of skin that are being destroyed a little faster than most.
This another view of the same area.
This is a top view of my right hand and wrist. The noticeable things in this photo are my swollen hand and arm. What appears as a dent in my forearm is actually the result of the removal of a large section of skin that went with the tumor. The swelling occurs because of the fluid trapped in my arm that can't get out. The removal of the lymph nodes under my arm prevents the fluid in my arm from circulating back into my torso normally. Once the radiation treatments are done I'll have some therapy to teach me how to massage some of the fluid back up my arm and then I'll wear a compression sleeve on this arm forever after that.
Monday, July 6, 2015
Changes
Started the new radiation treatments today. Number 14 to be exact. This means there are 14 more to go. I've had three full days without treatments and I sense things are beginning to change. Overall my fatigue level seems to be getting worse. I'm very tired with very little exertion. Taking a shower tires me out to the point now where I have to sit on my bed for a few minutes to gain some strength back before I get dressed. Then once I'm dressed I have to sit for ten minutes to gather the strength to go out the door and get in my car.
My arm is getting a nice tan to it now or should I say dirty brown. All of a sudden I have more freckles on that arm than ever. I looked at them just now with a lighted magnifying glass and some of the freckles actually are small blisters. That's a surprise to me; I thought it would take more radiation than what I've gotten so far to start breaking up the skin.
I told the technicians at Oschner when I arrived that I began having a stabbing pain where the lymph nodes were removed. I explained that it began Saturday with only a couple of instances of a stabbing pain during the day. Then Sunday the pain began to increase in numbers and length to about 6 episodes lasting about 5 seconds each with some residual soreness lasting about ten minutes after each episode. Then when I got up this morning the frequency of episodes increased to about one per hour, lasting about 30 seconds with the residual pain coming and going all day.
Guess what they told me. "we've been waiting to see when something would happen. The scar tissue from the surgery and the remaining muscles are fighting the radiation and beginning to tighten up. Don't worry it'll probably get worse."
Well, la-de-da...thanks for letting me know. Then they explained that the myriad reactions to radiation are so different that its pointless to scare a patient about the possible effects that may or may not occur. They told me to alert them to any effects like this and if my doctor thinks anything is unusual he'll get right on it. Thursday they took a complete battery of x-rays to see if there was any discernible damage occurring to my bones. Everything seemed okay so we continue on. Let's see what the rest of this week brings.
My arm is getting a nice tan to it now or should I say dirty brown. All of a sudden I have more freckles on that arm than ever. I looked at them just now with a lighted magnifying glass and some of the freckles actually are small blisters. That's a surprise to me; I thought it would take more radiation than what I've gotten so far to start breaking up the skin.
I told the technicians at Oschner when I arrived that I began having a stabbing pain where the lymph nodes were removed. I explained that it began Saturday with only a couple of instances of a stabbing pain during the day. Then Sunday the pain began to increase in numbers and length to about 6 episodes lasting about 5 seconds each with some residual soreness lasting about ten minutes after each episode. Then when I got up this morning the frequency of episodes increased to about one per hour, lasting about 30 seconds with the residual pain coming and going all day.
Guess what they told me. "we've been waiting to see when something would happen. The scar tissue from the surgery and the remaining muscles are fighting the radiation and beginning to tighten up. Don't worry it'll probably get worse."
Well, la-de-da...thanks for letting me know. Then they explained that the myriad reactions to radiation are so different that its pointless to scare a patient about the possible effects that may or may not occur. They told me to alert them to any effects like this and if my doctor thinks anything is unusual he'll get right on it. Thursday they took a complete battery of x-rays to see if there was any discernible damage occurring to my bones. Everything seemed okay so we continue on. Let's see what the rest of this week brings.
Friday, July 3, 2015
Third Week of Radiation Treatment Complete
The third week of radiation treatment is complete. Its been a short week however. On Monday the clinic was having computer updates loaded so no one had treatments that day. Then today being Friday, July 3rd the clinic is closed for the holiday. That means only three days of treatments this week.
One thing I have noticed is that the radiation exposure time for the treatments has been progressively getting longer. The first few treatments were done to a count of 5. Yesterday the long exposure times were done to a count of 18. I think this increase in exposure time is to allow the radiation to penetrate deeper into the skin.
My arm is only slightly darker than when the treatments began but more freckles are beginning to appear on my arm. My doctor says that's normal and what he was looking for. Every Thursday is a doctor's review of my progress. Yesterday he gave me a thumbs up for now. He inspects my arm, shoulder and armpit looking for any issues. He also checks my neck for lymph node swelling. I hope that is just precautionary and a not sign that he is looking for a problem to arise.
The radiated area hasn't bothered me yet. The only spot that is tender is where the primary tumor was removed. The doctor says that is normal because the skin in that area is touching the bone. Well, that's all for this week, we begin again on Monday.
One thing I have noticed is that the radiation exposure time for the treatments has been progressively getting longer. The first few treatments were done to a count of 5. Yesterday the long exposure times were done to a count of 18. I think this increase in exposure time is to allow the radiation to penetrate deeper into the skin.
My arm is only slightly darker than when the treatments began but more freckles are beginning to appear on my arm. My doctor says that's normal and what he was looking for. Every Thursday is a doctor's review of my progress. Yesterday he gave me a thumbs up for now. He inspects my arm, shoulder and armpit looking for any issues. He also checks my neck for lymph node swelling. I hope that is just precautionary and a not sign that he is looking for a problem to arise.
The radiated area hasn't bothered me yet. The only spot that is tender is where the primary tumor was removed. The doctor says that is normal because the skin in that area is touching the bone. Well, that's all for this week, we begin again on Monday.
Sunday, June 28, 2015
Second Week of Radiation Completed
Its Sunday afternoon and the rain and cloudiness outside seem to set the mood for the day. Friday completed the tenth day of table torture for me. I don't know if my arm is getting shorter or my attitude is. The skin is turning a nice shade of pink on my arm and the location where the primary tumor was removed has begun to ache. Overall its not a bad experience. The treatment itself is painless and I couldn't ask for better treatment from the doctors and technicians at Oschners.
Its been six months since the diagnosis of MCC. The process of dealing with this cancer has completely changed my routine and after six months I have begun to wonder what I did before this. I know that after these treatments are completed that it will be a waiting game. I will receive a PET scan every three months after this radiation is completed. Other than being watchful for any unusual pain or symptom it will a future of uncertainty. I will go back to being retired if possible and enjoy my life as it comes along.
Its been six months since the diagnosis of MCC. The process of dealing with this cancer has completely changed my routine and after six months I have begun to wonder what I did before this. I know that after these treatments are completed that it will be a waiting game. I will receive a PET scan every three months after this radiation is completed. Other than being watchful for any unusual pain or symptom it will a future of uncertainty. I will go back to being retired if possible and enjoy my life as it comes along.
Sunday, June 21, 2015
First Week of Radiation Therapy Complete
Its Sunday evening and the house has quieted down. We had my two daughters, their husbands and five grandchildren over for supper tonight to celebrate Father's Day. It gets quite noisy in the house with the grand kids playing with Legos and Hot Wheels. I wouldn't change a moment of the joy of watching those children play. My wife cooked a pork butt roast in the pressure cooker and we had some terrific pulled pork sandwiches and fries for supper. Home cooking is so much better than eating out and besides, I have leftovers for lunch for the week now.
Back to business. This week was five days of radiation therapy at Oschner Hospital at 5 P.M. each day. We set this schedule up so that Terry can put in a full day's work before driving me to the hospital. We've got the trip down to about 1 hour and 10 minutes providing no unforeseen slowdowns of the traffic. Once I arrive the techs take me into the treatment room and have me lay on the table. They place a preformed cast of my head and arm under me and line me up with green lasers. Then there's about ten minutes of x-rays and adjustments to confirm that my arm is in exactly the correct position for treatment.
This is when the pain sets in. Not from the radiation but from the awkward position of my arm. Its stretched over my head as far as it will go and twisted into the correct position for optimum treatment. The treatment is done in at least five segments and I can't move for more than ten minutes. The machine swings around me with its focusing lens opening and closing at each position and dosing me with radiation until it finishes. Once the treatment is over the techs lower the table and tell me we're finished and I can go. That's easy for them to say. I have to reach over my head with my left hand, grab my right hand and pull it down until I can feel anything in it. The wife and I head out for home with a usual meal on the way and arrival at home about 8 P.M.
This picture is exactly like the machine in use at the hospital. The small x-ray machine in the upper right hand portion of the machine is the alignment x-ray used to obtain proper alignment of my arm. The large blue eye looking down is the treatment x-ray and does the necessary work.
Back to business. This week was five days of radiation therapy at Oschner Hospital at 5 P.M. each day. We set this schedule up so that Terry can put in a full day's work before driving me to the hospital. We've got the trip down to about 1 hour and 10 minutes providing no unforeseen slowdowns of the traffic. Once I arrive the techs take me into the treatment room and have me lay on the table. They place a preformed cast of my head and arm under me and line me up with green lasers. Then there's about ten minutes of x-rays and adjustments to confirm that my arm is in exactly the correct position for treatment.
This is when the pain sets in. Not from the radiation but from the awkward position of my arm. Its stretched over my head as far as it will go and twisted into the correct position for optimum treatment. The treatment is done in at least five segments and I can't move for more than ten minutes. The machine swings around me with its focusing lens opening and closing at each position and dosing me with radiation until it finishes. Once the treatment is over the techs lower the table and tell me we're finished and I can go. That's easy for them to say. I have to reach over my head with my left hand, grab my right hand and pull it down until I can feel anything in it. The wife and I head out for home with a usual meal on the way and arrival at home about 8 P.M.
This picture is exactly like the machine in use at the hospital. The small x-ray machine in the upper right hand portion of the machine is the alignment x-ray used to obtain proper alignment of my arm. The large blue eye looking down is the treatment x-ray and does the necessary work.
Second Surgery
About a month after the first surgery to remove the cancer lesion from my arm I underwent the second surgery to remove the cluster of lymph nodes under my armpit. I didn't look forward to it but I knew it was necessary. The biopsy of the nine lymph nodes removed this time showed no sign of Merkel Cell present in the nodes. However, upon reading the surgical report there was mention of random Merkel cells present in the tissue that was removed with the nodes. I assume that is the purpose of the current radiation treatments that I'm receiving. The area being radiated stretches from my wrist through my armpit almost to my neck. The objective is to kill any remaining Merkel cells that may be lurking in the tissue. I should say any "malignant" Merkel cells.
Remember the date of 27 April. That was the first appointment day I had scheduled with the VA dermatologist to look at my skin. The second surgery actually took place on April 25! If I had not been concerned enough to press for an earlier appointment it is possible I might have been too late.
I may backtrack in a future post about some things that happened between then and now. For now, I will post the current situation and any news that affects my future with Merkel Cell Carcinoma.
Remember the date of 27 April. That was the first appointment day I had scheduled with the VA dermatologist to look at my skin. The second surgery actually took place on April 25! If I had not been concerned enough to press for an earlier appointment it is possible I might have been too late.
I may backtrack in a future post about some things that happened between then and now. For now, I will post the current situation and any news that affects my future with Merkel Cell Carcinoma.
Beginning the Treatment for MCC
The first step in treatment for MCC was for me to meet with the surgeon who would perform my cancer treatments. The initial consultation was set up and I met with my doctor at Oschner Hospital. He examined my arm and drew a football shaped circle around the lesion. He explained to me that he would remove the lesion and at least 2 centimeters of clear flesh around the lesion. The purpose for this was to secure clear flesh and to remove all the MCC from that area.
In addition he would remove the sentinel lymph node from my armpit also to check for MCC in my lymph nodes.
He removed four lymph nodes for biopsy and left a drain in my chest for two weeks. The drain was the most aggravating part of the whole procedure. The following week the doctor called me and let me know that the biopsy of the lymph nodes showed 2 out of the 4 nodes with malignant MCC present in them. Because the cancer had metasticide to my lymph nodes he needed to remove all the lymph nodes under my armpit.
However, before proceeding with the second surgery, he scheduled me for a PET scan. This is a Positron Emitting Tomography scan. The machine looks remarkably like a CT scanner only it works in a different way.
I was given an injection of radiated glucose an hour before the scan then left to relax while the injection spread throughout my system. The purpose being that tumors consume glucose in larger amounts than normal cells and if there were MCC tumors present they would glow because of the extra glucose they were consuming.
A few days later I received a call from the doctors nurse and she told me the PET scan was negative. That was good news and she gave me the date for the second surgery to remove all the lymph nodes under my armpit.
If distant tumors had been found beyond my lymph nodes in my armpit there would have been no further surgery. The spread of MCC throughout the body signals the end of the line. MCC does not respond to chemotherapy and tumors inside the body will grow until the body is consumed by them. The medical team will provide palliative care from that point forward until the end of life. Remember back at the beginning when I quoted the literature. MCC...aggressive and lethal, that's the trademark of this cancer.
I am currently going through 5 weeks of 5 days a week radiation on my arm and chest to try to destroy any MCC cells that might remain. Once that is done I will given a PET scan every three months after that to see if the cancer has returned.
Thursday, June 18, 2015
Let the Confusion Begin
I continued to research information about Merkel Cell and read every site I could find, some several times just to get an understanding about the information. The information was confusing because of the rarity of Merkel Cell Carcinoma. There didn't seem to be large enough numbers of patients with MCC to study the cancer in any meaningful way. There were different treatment plans, different staging and different opinions about this cancer depending on which hospital you were treated at.
The population of MCC patients in this country increases somewhere between 1000 to 1500 new cases a year. That is a very small number and since we are spread across the entire United States it is difficult for doctors to get a handle on this cancer in any meaningful way.
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The chart you see here is the most common one that I could find that made sense to me. I fall into the IIIA category.
Stage
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5-year Relative Survival Rate
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IA
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About 80%
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IB
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About 60%
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IIA
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About 60%
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IIB
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About 50%
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IIC
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About 50%
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IIIA
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About 45%
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IIIB
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About 25%
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IV
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About 20%
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By this chart you can see that as a IIIA patient I fall into the 45% survival rate for 5 years after initial diagnosis. More about these topics later
Wednesday, June 17, 2015
Back to the Beginning
Okay, I am continuing to fill in my past history with MCC. I felt that having an appointment to see a dermatologist in late April was not going to be soon enough. I sent the VA email pictures of the growths on my face and the way they were growing and asked for an earlier appointment or an outside of the system appointment if the VA could not see me sooner. They agreed to set up an appointment for the following week at the VA in New Orleans. I went to this appointment and was very pleased with the doctors who treated me.They examined the growths on my face and determined them to be warts. Using a nitrogen cylinder, the doctor froze the warts and they were to fall off several days later. Since I was on the examining table I asked the doctor to look at the pimple on my arm and see if she could do something for it. I told her I thought it was a pimple and she agreed that it might be. Just to be safe she decided to take a slice biopsy to have it checked just in case it was more than a pimple.
She began by injecting a local pain killer at the site. She then sliced off the top of the bump and placed it in a container. She began to clean the wound and I noticed her frown. She said Mr. Pangle this is cancer. I asked her if she was certain and her reply was that after her years of practice she recognized it immediately. This pronouncement was a surprise and worried me at the same time. I was aware of the the three common skin cancers and I was prepared to find out which it was. She told me that an answer would be coming in about a week and we would proceed from there.
Well, a week went by and no call from the VA. I decided to call and see what was happening. The doctor on call said he would check to see the status of my biopsy. He told me that my sample had been sent to the National Cancer Institute in Washington D.C. to confirm the diagnosis but he couldn't say anything until that information was sent back to them.
After another seven days I finally received a return call from the VA. For the complete week I was baffled by the need to send my sample to D.C. and was quite worried about what was happening. The doctor who called me was kind and apologetic about the delay and reassured me that it was necessary. He then told me that the sample showed Merkel Cell Carcinoma. He then says that this cancer is rare, aggressive, and lethal. He was kind and we talked about the new appointment I had set up for the following week. Since MCC is so rare the VA doesn't treat patients with this cancer. My appointment was with a surgeon at Oschner Hospital in Kenner, La. He was to begin my odyssey of treatment for this disease in early February of 2015.
Network Issues
June 12th, 2015 | Merkel Cell Carcinoma, Uncategorized | No Comments »
I had hoped to be further along with this blog. For at least a week the web was giving me a bad gate screen when I tried to login to this page. Enough of that. Let me give some background about myself so that I don’t come across as a complete stranger. I am 65 years old and live in south Louisiana; in the Atchafalaya basin to be accurate. I was born a Louisiana boy in the prairie country of St. Landry parish and remain that today. I am a Vietnam veteran having served in the army there from August of 1970 until August of 1971. I am married 40+ years to my wife Terry, have three children and eight grandchildren. Later on I’ll relate to their emotions when I told them of my MCC diagnosis. I just got home from Oschner Hospital in New Orleans. Today I went for the final set up procedures to begin my radiation therapy on Monday. More later.
Vicksburg National Park. Went there on vacation several years back and really enjoyed the history of the park.
Okay, its Sunday afternoon. We’ve gone to church, eaten lunch, shopped at Lowes for light bulbs and returned home. To continue where I left off. I was diagnosed with MCC back in February 2015 so the initial blogs here will be to fill the gaps between then and now. The exact dates early on are a little fuzzy because not knowing what I was dealing with didn’t bother me. It wasn’t until the diagnosis that timing the progress of this disease seemed to be more important to me. It was early January 2015 that I noticed a small red bump on the outside of my right forearm. It was at this time that I was watching 2 small growths on my cheeks and tracking them. I began to research skin cancer because at the rate they were growing it seemed there might be some connection. My researching led me to believe I was growing some of the basic skin cancers on my face. At the same time the red bump on my forearm appeared to be a pimple in progress so I didn’t worry about it. I am 100% VA certified disabled so I called the VA and asked for a dermatological appointment in New Orleans. They gave me a date of April 17, 2015 (remember this date!). I was photographing the growths on my face daily and watching the changes as they grew. I became concerned in late January about the rapid growth so I emailed the VA with photos of the growths and requested an earlier date. They were cooperative and made an appointment for me in early February to visit the Derm department at the NOLA VA.
First Day Blog on Merkel Cell Carcinoma
I’m beginning this blog on a sunny Sunday morning in the heart of the bayou country in south Louisiana. My reason, after having been diagnosed with MCC (Merkel Cell Carcinoma), I went on a search for all the information I could find about this cancer. There is information available on the medical websites that describes this cancer but much of it is repetitious from one site to the next. To quote Wikipedia, “Merkel cell carcinoma is a rare and highly aggressive skin cancer, which, in most cases, is caused by the Merkel cell polyomavirus (MCV) discovered by scientists at the University of Pittsburgh in 2008.[1] It is also known as cutaneous APUDoma, primary neuroendocrine carcinoma of the skin, primary small cell carcinoma of the skin, and trabecular carcinoma of the skin” end quote. You can read about the particulars of the disease on various websites. My purpose here is not scientific. I searched for patient stories, blogs or life experiences of people contending with this cancer. I hoped to gain some insights into how others were or are coping with this cancer. Well, patient personal stories are rare to non existent. So, in an effort to make others not feel totally isolated with this disease and to inform my family and friends, I will document my life with MCC for as long as I can.
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