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.
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