It's taken me a while to write this post. The emotions are all tied up with my current situation, and some of what I went through is hard to express. First of all, the biggest thing I realized about half way through my days with Interferon is, I was going to live and, I was living. Some things were hard but I was still thoroughly enjoying our sons AAA Hockey days. The games, the tournaments, the people, Melanoma and Interferon did not take that away. Our daughter was at university and though, my experience of taking her there was clouded by Interferon, now I talked to her, visited her and even helped her through her inevitable bout of homesickness and indecision, treatment didn't take being a Mom away. I got to spend time with our oldest son who was off school for a year because I was home and had the time to talk to him with undivided attention. As I contemplate those days I wonder if some of the conversations we had, helped him become the responsible, loving father and husband he is today. In general, I realized, there were some good things happening even though I was going through the worst challenge I had ever faced. Realizing that good things were happening during treatment made me realize that there were going to be good things happening after treatment was done. The question was, could I, or did I even want to go back to "normal"
The truth was I could never go back. Melanoma had changed me. When I finished my treatment I knew my prognosis as a IIIA was good but I also knew that I was at high risk for recurrence. Was I going to just wait for that to happen or was I going to put that away and use the strength and insight I had found to challenge myself. I chose to challenge. I went back to school at 49 years old in a completely different field than I had been working in, Healthcare. A nearby community college offered a one year, PSW, certificate program so I signed up. It turned out that I could still excel at learning, though my concentration abilities had suffered from the Interferon. Even though I struggled a little at first, I found that the more I studied the more the "chemo fog" cleared. Though the "book" part of the program was essentially easy for me I was struggling with the skills part. The part where I actually had to practice providing care for patients. The first thing that helped me turn that around were two projects, one a presentation with a partner and the other a ten page research paper on a subject of my choice. Both were focused on Melanoma. In the research project I presented the new treatment and testing options that were being studied and were set to change the face of Melanoma treatment. That gave me hop and established my practice of following current research and changes in the treatment of Melanoma. The presentation focused on the incidence of Melanoma, prevention and how it wasn't "just skin cancer" We opened with a video " 16 Year Old Me' . The video is pretty shocking but not as shocking as when I asked the class of roughly 50, if they knew anyone who had been diagnosed with Melanoma. Nobody did but then I told them now they did know someone I could see the range of emotions and questions on their faces. We finished the rest of the presentation and opened it up for questions. The presentations that were to follow were delayed to next class because of the questions. I answered all, openly and feeling so comfortable and passionate in my desire to help prevent anyone from going through my experience by educating. Public speaking and sharing my experiences were never something I was comfortable with at all! Now I was doing both with no fear and this gave me a confidence I had never had. The second thing that turned me around was a little harder and took a little longer.
We all had to do a practical placement in a nursing home in order to graduate. When we first met our clinical supervisors we all shared why we had chose to take this course. I shared my Melanoma diagnosis and how it had lead me to a desire to be in profession of helping people but she seemed to have reservations that I was emotionally or physically ready to do the job. As any student I was nervous, but eager to please but being me I was never afraid to ask why when faced with what I saw as a conflict. We got off on the wrong foot and it descended from there. Now I look back, as one with experience in the job, and know I was put in impossible situations that were set up for failure, but at the time I was kind of "shell shocked" and embarrassed to tell my friends what was going on. I had always been a friendly person but very reserved, especially about what I saw as my own failure. Asking for help was never my strong suit. Even when my clinical supervisor asked if I had a learning disability because personal notes were messy, I still didn't stand up for myself. The supervisor failed me and I was ready to accept that but my acceptance only lasted for an hour. I finally told my friends and in their reactions I saw what was happening. I was being bullied and set up for failure and should not accept that. There was a loophole, because the final placement in a nursing home with assigned preceptors had, at the time no prerequisites I was able to complete that part of the course and received great recommendations from the staff, supervisors and my new clinical supervisor. I used those recommendations to appeal the failing grade and it was overturned by the Dean of Health Sciences. Before having Melanoma I would never have shared my failure or fought that decision. I graduated, and started working with adults with acquired brain injuries and I found out I was good at my job. The experience of being the one requiring care instilled in me an empathy that I would never of had otherwise. Melanoma took a piece of my body and soul but it gave me back more courage and understanding that I ever would have had without that diagnosis.
I am still working in healthcare. I have been guest speaker at new patient information sessions, have continued in school, been support for others diagnosed both unofficially on forums and chats and as a peer support for The Melanoma Network of Canada. So many things that give me joy and purpose that I do now, I never would have done without having Melanoma. It's a part of my life and part of who I am but it does not define me. The biggest thing I discovered half way through treatment was that I did not and would not call myself a "survivor", I do more than just survive and am still thriving even though I live with Melanoma. It was a blow to move from the No Evidence of Disease to recurrence but I am still thriving, still hoping, still confident that I will have joy and love and give both back as well as hope. This post has pretty much covered my Melanoma experience from the middle of treatment almost nine years ago to just a couple months ago when I found a lump in the left groin where I had my lymph nodes removed. Writing about what has brought me to this point has helped me face what I had placed in the back corner of my mind, recurrence, and I believe it will help me as I go through the days to come. I hope it will give you, who might be reading it, hope, information whatever you need. I have surgery slated for January 7th 2019 so my next post will start with there.
Wednesday, January 2, 2019
Wednesday, December 12, 2018
The next 48 weeks
Well I made it through the IV stage of Interferon and now was ready to move on to the long haul. I had a few days break over Labor Day weekend before I had to start. I was surprised how I started to feel better after only three days but I was still exhausted. We took our daughter up to Guelf as she was starting and I remember the stair case in to her residence. The trip up that stairs, I would say about 30, and then to the elevator, felt like walking 10 kilometers after not sleeping or eating for 48 hours. She was so excited to be there but I was struggling through the fatigue so much that I really couldn't enjoy the moment with her. I don't know if she realised then or even now that I| was so debilitated from fatigue, and that was the reason for my lack of focus and emotion. I'm not sure if she thinks about that day at all but I know I feel a loss at not being able to be more than just physically present. It was a feeling that would follow through the next year.
I picked up my three month supply of Interferon from the local pharmacist and waited for my home care RN to come over to help me learn how to do my injections. Living in a small town has it's advantages, Beth the RN who had helped me with wound care after the surgery would also help me with my interferon. We were both a little confused, Beth had never helped with Interferon and I certainly had not had any experience but we figured it out and I was set. The injections were done with a pre-set pen loaded with Interferon. I dialed the pen to the, I think two mg, attached the disposable needle and injected subcutaneously. My spots were either thigh and across the belly, always alternating between injection. The side effects of the injection site were swelling, warmth and redness, this would come back to haunt me later in the year. I did my injections on Monday, Wednesday and Friday just before I went to bed. Taking the injection before bed helped me sleep through the worst part of side effects of chills and aches. Ibuprophen was also apart of my nightly routine, and my daily routine for that matter. Headaches were a part of life now, daily headaches. Moving to the lower dose injections gave me back some energy and decreased to aches to the point where I could function at home again. I was able to focus enough to make dinner, go to hockey games, grocery shop and all the activities of family living though I had to plan naps, limit outings to once a day, get a handicap sticker for my van because those extra few steps made the difference of being able to complete my shopping list or not. Mondays were usually the day I reserved for shopping or other stuff as it was my best day energy wise because I hadn't had an injection since Friday. Our son was playing AAA Hockey out of town and going to the games, I never missed one, getting ready, making dinner before etc. were about all I could manage. I had to stop driving out of town because I fell asleep in the car after about 15 mins. For that matter if I sat down more than 15 minutes I fell asleep. I slept a lot! but never felt rested. One of the recommendations to help with fatigue was nutritious food. That was a challenge.
Remember in a earlier post how I said the Interferon gave me a taste of band aids in my mouth? That didn't really change. Hardly anything tasted good. Coffee was horrible and I love my coffee. I could drink it loaded with flavorings, sugar and cream but gone was my favorite black coffee. The only thing I remember really enjoying were sweets and orange soda. Everything else was just blah. The problem was your body's instinct when faced with prolonged fatigue is to fuel it with food. The only things that really tasted any good were ice cream and orange pop so I inevitably gained weight , 30 lbs by the time I was done. By the time I was done I had lost about 30% of my hair, I had a lovely receding hair line , had multiple eye infections, had a rather serious injection site infection because the symptoms of infection are the same as the injection side effects. That infection required me to go back on wound care and realise just what a disadvantage not feeling pain could be. If the infection had happened in an area where I didn't have sensory nerve damage I would have realised something was going on a lot sooner. Every month I went for my blood work and to check in with my oncologist and though I was getting more minor infections my liver enzymes, and blood counts held so I finished the treatments. It was a long year, when it finally ended I was too exhausted to even celebrate.
That was the highlights of the physical effects of being on Interferon. Some side effects were permanent like hypothyroidism, menopause, ( everything just dried right up, I forgot to mention how dehydrating Interferon is) some were temporary. The brain fog started to clear, I wasn't forgetting words in the middle of a sentence as much anymore or telling people the same thing over and over because I forgot I just told them 15 minutes ago. Emotionally I was all over the board, it took me a long time to even realise what it did to me emotionally. I had changed as a person, I had a lot of time to think about my future and what part Melanoma was going to have. It was time to start acting on the plans I had made. All of that will be it's own post. There was a lot of self reflection that year that changed my life. My life had permanently changed because of that little 1.2 cm mole and I could never go back to what I had known. I was in the Cancer Club so what was I going to do about that.
I picked up my three month supply of Interferon from the local pharmacist and waited for my home care RN to come over to help me learn how to do my injections. Living in a small town has it's advantages, Beth the RN who had helped me with wound care after the surgery would also help me with my interferon. We were both a little confused, Beth had never helped with Interferon and I certainly had not had any experience but we figured it out and I was set. The injections were done with a pre-set pen loaded with Interferon. I dialed the pen to the, I think two mg, attached the disposable needle and injected subcutaneously. My spots were either thigh and across the belly, always alternating between injection. The side effects of the injection site were swelling, warmth and redness, this would come back to haunt me later in the year. I did my injections on Monday, Wednesday and Friday just before I went to bed. Taking the injection before bed helped me sleep through the worst part of side effects of chills and aches. Ibuprophen was also apart of my nightly routine, and my daily routine for that matter. Headaches were a part of life now, daily headaches. Moving to the lower dose injections gave me back some energy and decreased to aches to the point where I could function at home again. I was able to focus enough to make dinner, go to hockey games, grocery shop and all the activities of family living though I had to plan naps, limit outings to once a day, get a handicap sticker for my van because those extra few steps made the difference of being able to complete my shopping list or not. Mondays were usually the day I reserved for shopping or other stuff as it was my best day energy wise because I hadn't had an injection since Friday. Our son was playing AAA Hockey out of town and going to the games, I never missed one, getting ready, making dinner before etc. were about all I could manage. I had to stop driving out of town because I fell asleep in the car after about 15 mins. For that matter if I sat down more than 15 minutes I fell asleep. I slept a lot! but never felt rested. One of the recommendations to help with fatigue was nutritious food. That was a challenge.
Remember in a earlier post how I said the Interferon gave me a taste of band aids in my mouth? That didn't really change. Hardly anything tasted good. Coffee was horrible and I love my coffee. I could drink it loaded with flavorings, sugar and cream but gone was my favorite black coffee. The only thing I remember really enjoying were sweets and orange soda. Everything else was just blah. The problem was your body's instinct when faced with prolonged fatigue is to fuel it with food. The only things that really tasted any good were ice cream and orange pop so I inevitably gained weight , 30 lbs by the time I was done. By the time I was done I had lost about 30% of my hair, I had a lovely receding hair line , had multiple eye infections, had a rather serious injection site infection because the symptoms of infection are the same as the injection side effects. That infection required me to go back on wound care and realise just what a disadvantage not feeling pain could be. If the infection had happened in an area where I didn't have sensory nerve damage I would have realised something was going on a lot sooner. Every month I went for my blood work and to check in with my oncologist and though I was getting more minor infections my liver enzymes, and blood counts held so I finished the treatments. It was a long year, when it finally ended I was too exhausted to even celebrate.
That was the highlights of the physical effects of being on Interferon. Some side effects were permanent like hypothyroidism, menopause, ( everything just dried right up, I forgot to mention how dehydrating Interferon is) some were temporary. The brain fog started to clear, I wasn't forgetting words in the middle of a sentence as much anymore or telling people the same thing over and over because I forgot I just told them 15 minutes ago. Emotionally I was all over the board, it took me a long time to even realise what it did to me emotionally. I had changed as a person, I had a lot of time to think about my future and what part Melanoma was going to have. It was time to start acting on the plans I had made. All of that will be it's own post. There was a lot of self reflection that year that changed my life. My life had permanently changed because of that little 1.2 cm mole and I could never go back to what I had known. I was in the Cancer Club so what was I going to do about that.
Wednesday, December 5, 2018
Now to Interferon UGH
I decided on Interferon, even though the therapy was controversial due to it's questionable success rate, because I knew I was not going to be able to "wait and see" . That part of my personality, the part that lets you wait without out taking every personal action I can, is sorely lacking. I went through the expected side effects with my oncologist. Did all the reading I could. I talked to peer support volunteers who had been through the protocol and thought I had a handle I what was goin to happen. Yeah, I thought I did.
The first part of the 52 week plan was four weeks of daily IV Interferon with normal saline at the Chemotherapy lab at the hospital with weekly blood tests. I had been warned about a "metal" taste in my mouth, chills, headache, myalgia, in essence flue like symptoms but I was not prepared for what happened. I, much to the chagrin of the suite nurses, opted to not have a port in my hand. For me it was to exposed, anyone walking down the street could guess I was receiving some kind of treatment and I wasn't ready to share with the world. I have never been afraid of needles so I watched calmly as the IV was inserted. First the saline was hung and started to flow, then the Interferon. As soon as the Interferon hit my blood stream I tasted it, a taste I would live with for the next year. Not metal, I think I could have managed that better. All I could taste was band aids! You know the smell of plastic band aids when you open the box? that's what I tasted in my mouth. The infusion took about 40 minutes and off I went. Didn't really feel to bad, but that didn't last long.
By the time we arrived home after the 45 minute drive from the hospital the headache hit. It was like no pain I had ever felt. No caesarean section, colectomy, or abscessed tooth had ever hit me like the pain in my head. I knew I could take Tylenol but after taking that I might as well have popped a couple M&M's, at least I might have enjoyed the chocolate. All I could think of was floating in water. We didn't have a hot tub so off to the bath I went. I filled the tub with the hottest water I could stand and submerged myself, head and all, until the water got to cold. It helped a little. By that time the chills had started. It was August and in the high 80's but I was wrapped in a down quilt freezing. I finally fell asleep about an hour later and woke up after about another hour and the worst of it seemed to pass. The headache was tolerable, the chills were gone by I was exhausted. I tried to eat but it all still tasted like band aids so I grabbed an orange pop ( I was to drink a lot of these in the next 52 weeks) and that wasn't bad. Tomorrow I would go again and plead to be able to take Ibuprophen hoping that, that might ease the pounding in my head tomorrow.
The next day I went and requested that I be able to use Ibuprphen and got the go ahead. Same headache after but it was manageable. My nurse also gave me hope when she told me that most patients only experience those head splitting headaches the first few treatments. By the time Friday came I had a bit of a routine. Take the Ibuprophen before going, bring the quilt in the truck, crawl into bed when I got home and emerge a couple hours later, exhausted but functional. Next morning I was fine. This lasted for about two weeks and then I hit the wall. It was just like a wall, Every step felt like I was walking in water. The fatigue was debilitating. I could manage to walk upstairs to the bathroom but then that required a 10 minute rest. The headaches had subsided and the chills only lasted about one hour now but the fatigue, I still can't adequately describe how my energy so just depleted. I was so fatigued it was tiring to speak. This all lasted for four weeks. I knew if I just made it to the end of August I would then go on to the decreased dose and injection phase. It seems that I pretty much slept through it because after the first two weeks all I really remember is being at the hospital. It was Labor Day now and I was done this part. The part that everyone said was the hardest. The next part was to last for a total of 48 weeks and would start after the long weekend, but for now I had a break so I was going to enjoy that. We sent our daughter off to University, got our son ready for AAA Hockey, and got our other son prepared for the year off school he would have to do because he changed his program at college. All these things would in their way, help me through the next year though I had no idea of their upcoming importance.
The next phase will take a few posts. That phase was full of fun little side effects, ups and downs, decisions and revelations. I will start to tackle that phase next time.
The first part of the 52 week plan was four weeks of daily IV Interferon with normal saline at the Chemotherapy lab at the hospital with weekly blood tests. I had been warned about a "metal" taste in my mouth, chills, headache, myalgia, in essence flue like symptoms but I was not prepared for what happened. I, much to the chagrin of the suite nurses, opted to not have a port in my hand. For me it was to exposed, anyone walking down the street could guess I was receiving some kind of treatment and I wasn't ready to share with the world. I have never been afraid of needles so I watched calmly as the IV was inserted. First the saline was hung and started to flow, then the Interferon. As soon as the Interferon hit my blood stream I tasted it, a taste I would live with for the next year. Not metal, I think I could have managed that better. All I could taste was band aids! You know the smell of plastic band aids when you open the box? that's what I tasted in my mouth. The infusion took about 40 minutes and off I went. Didn't really feel to bad, but that didn't last long.
By the time we arrived home after the 45 minute drive from the hospital the headache hit. It was like no pain I had ever felt. No caesarean section, colectomy, or abscessed tooth had ever hit me like the pain in my head. I knew I could take Tylenol but after taking that I might as well have popped a couple M&M's, at least I might have enjoyed the chocolate. All I could think of was floating in water. We didn't have a hot tub so off to the bath I went. I filled the tub with the hottest water I could stand and submerged myself, head and all, until the water got to cold. It helped a little. By that time the chills had started. It was August and in the high 80's but I was wrapped in a down quilt freezing. I finally fell asleep about an hour later and woke up after about another hour and the worst of it seemed to pass. The headache was tolerable, the chills were gone by I was exhausted. I tried to eat but it all still tasted like band aids so I grabbed an orange pop ( I was to drink a lot of these in the next 52 weeks) and that wasn't bad. Tomorrow I would go again and plead to be able to take Ibuprophen hoping that, that might ease the pounding in my head tomorrow.
The next day I went and requested that I be able to use Ibuprphen and got the go ahead. Same headache after but it was manageable. My nurse also gave me hope when she told me that most patients only experience those head splitting headaches the first few treatments. By the time Friday came I had a bit of a routine. Take the Ibuprophen before going, bring the quilt in the truck, crawl into bed when I got home and emerge a couple hours later, exhausted but functional. Next morning I was fine. This lasted for about two weeks and then I hit the wall. It was just like a wall, Every step felt like I was walking in water. The fatigue was debilitating. I could manage to walk upstairs to the bathroom but then that required a 10 minute rest. The headaches had subsided and the chills only lasted about one hour now but the fatigue, I still can't adequately describe how my energy so just depleted. I was so fatigued it was tiring to speak. This all lasted for four weeks. I knew if I just made it to the end of August I would then go on to the decreased dose and injection phase. It seems that I pretty much slept through it because after the first two weeks all I really remember is being at the hospital. It was Labor Day now and I was done this part. The part that everyone said was the hardest. The next part was to last for a total of 48 weeks and would start after the long weekend, but for now I had a break so I was going to enjoy that. We sent our daughter off to University, got our son ready for AAA Hockey, and got our other son prepared for the year off school he would have to do because he changed his program at college. All these things would in their way, help me through the next year though I had no idea of their upcoming importance.
The next phase will take a few posts. That phase was full of fun little side effects, ups and downs, decisions and revelations. I will start to tackle that phase next time.
Tuesday, December 4, 2018
The reality of living with Lyphedema, a by product of Melanoma
Well this post is going to jump ahead to present day. I guess for today we can consider the first two flashbacks like in a move, setting up for the present day story line. On November 9th I had a biopsy done of my melanoma to determine BRAF status. The original sample was lost from 2010. I was a little peeved but considering at the time BRAF was possibly still in phase I trails, if that, I am not to upset. Anyway, I had the biopsy in the doctors office and all was fine. No local was given as it was a type of punch biopsy using a new tool that is reminiscent of a tool used in bone marrow extraction. Reminds you of a barbeque lighter but with a hollow end. A type of disposable hollow needle is inserted in the end then into the area where the tumor is. The doctor presses a trigger and a the needle is sent in to the body, quickly to "grab" a sample then the tool is pulled out. Sounds painful right? Something that you would have at least a local anesthetic for? Well not me. Because of my previous surgeries I have significant sensory nerve damage in the exact area they were going into for a sample. I did not feel it go in at all but felt a quick, painful pinch, when the trigger was pulled. After it was done I did not feel the stitches or any real pain other than a muscle ache for the inflammation it of course caused. Everything was fine, stitches were removed a week later and the area looked well healed. There was lymphedema present but considering the circumstances it was to be expected. All was well.
Fast forward to November 30th. I was feeling pain, enough to take ibuprophen on a regular basis and then I noticed the area was not just swollen it was hot and red. Sure sign of infection. No external signs but I had been through this before with an infected injection site and knew if I was feeling pain, with all that nerve damage, others without would have been in the doctor's office days ago. I got myself to the ER and the doctor on call agreed with my assessment and ordered a sulfa based antibiotic as I am allergic to Penicillin. I knew the drill, no improvement in 24 -48 hours and go back but, within 12 hours the redness and heat were reduced by 75% and the swelling had receded somewhat. It was infection and it was a good thing I was paying attention.
The moral of the story here is if you do have nerve damage and secondary lymphedema it is imperative you pay attention. Pain is vital to your health, it tells you something is wrong and if you don't pay attention you can end up in real trouble. Those of us with nerve damage are at a disadvantage because we can't rely on pain to tell us we have to use our other senses to look for what pain should tell us. We are the center of our health care team and need to play our part or the game does not go well.
Fast forward to November 30th. I was feeling pain, enough to take ibuprophen on a regular basis and then I noticed the area was not just swollen it was hot and red. Sure sign of infection. No external signs but I had been through this before with an infected injection site and knew if I was feeling pain, with all that nerve damage, others without would have been in the doctor's office days ago. I got myself to the ER and the doctor on call agreed with my assessment and ordered a sulfa based antibiotic as I am allergic to Penicillin. I knew the drill, no improvement in 24 -48 hours and go back but, within 12 hours the redness and heat were reduced by 75% and the swelling had receded somewhat. It was infection and it was a good thing I was paying attention.
The moral of the story here is if you do have nerve damage and secondary lymphedema it is imperative you pay attention. Pain is vital to your health, it tells you something is wrong and if you don't pay attention you can end up in real trouble. Those of us with nerve damage are at a disadvantage because we can't rely on pain to tell us we have to use our other senses to look for what pain should tell us. We are the center of our health care team and need to play our part or the game does not go well.
Thursday, November 29, 2018
The Story Begins
So now you know a little about me let me tell you how I started my life with melanoma. I had a mole on my left thigh. I saw it every time I sat on the toilet. I watched it for a while, much to long in fact and called the doctor. I thought I was being pro active. The last time I had asked a surgeon to remove a bump on my arm it turned out to be a thorn surrounded by scar tissue that I never knew was even there. I wasn't worried which is why when the results came back and the surgeon, the father of the boy my daughter was dating, told me it was Melanoma I was shocked. Shocked is an understatement I was amazed. He told me how the lesion was 1.2cm which meant I would be referred to the regional cancer center. anything under 1 cm and I would be done for now with follow ups on the plan. I have said often that the .2cm saved me.
I met with my surgeon within ten days. She explained the procedure of Local Wide Dissection, she would take 2cm of tissue in all directions surrounding the lesion. We also discussed a Sentinel Node Biopsy which had become the standard for any tumor over 1 cm. I of course asked prognosis, odds of the SNB being positive all the big questions that the Cancer word immediately puts in your head. My surgeon said with a negative SNB my prognosis was in the 90%-95% of never dealing with the disease again. If there was spread to the Sentinel Node things could change but given the size of my initial lesion the chance of the Sentinel Node being positive were only 15% -20%. Seems I was the lucky winner because pathology reports showed microscopic disease in the Sentinel Node. Here we go.
The next few weeks were filled with CT scans, MRI's, Ultrasounds and worry. My primary physician prescribed Lorazepam which helped but it just took off the edge. One particularly rough night was when the CT showed a "spot" on my liver. My surgeon called to say she ordered an Ultrasound and explained to me that almost half the population have Hemangiomas, masses of blood vessels resembling a strawberry birthmark, on their livers, she said don't worry yet. Sure , I can do that, maybe in an alternate universe. Turns out it was hemangioma and I was set for surgery. Diagnosis on April 20 and last surgery , Radical Lymph node Dissection on June 12. Following surgery we would move to a course of Interferon.
The surgery went well, 26 nodes were removed and a flap was created to protect my femoral artery now that so much tissue was removed. I healed well and at the end of six weeks was ready for the next phase, Interferon, but that's for next time.
I met with my surgeon within ten days. She explained the procedure of Local Wide Dissection, she would take 2cm of tissue in all directions surrounding the lesion. We also discussed a Sentinel Node Biopsy which had become the standard for any tumor over 1 cm. I of course asked prognosis, odds of the SNB being positive all the big questions that the Cancer word immediately puts in your head. My surgeon said with a negative SNB my prognosis was in the 90%-95% of never dealing with the disease again. If there was spread to the Sentinel Node things could change but given the size of my initial lesion the chance of the Sentinel Node being positive were only 15% -20%. Seems I was the lucky winner because pathology reports showed microscopic disease in the Sentinel Node. Here we go.
The next few weeks were filled with CT scans, MRI's, Ultrasounds and worry. My primary physician prescribed Lorazepam which helped but it just took off the edge. One particularly rough night was when the CT showed a "spot" on my liver. My surgeon called to say she ordered an Ultrasound and explained to me that almost half the population have Hemangiomas, masses of blood vessels resembling a strawberry birthmark, on their livers, she said don't worry yet. Sure , I can do that, maybe in an alternate universe. Turns out it was hemangioma and I was set for surgery. Diagnosis on April 20 and last surgery , Radical Lymph node Dissection on June 12. Following surgery we would move to a course of Interferon.
The surgery went well, 26 nodes were removed and a flap was created to protect my femoral artery now that so much tissue was removed. I healed well and at the end of six weeks was ready for the next phase, Interferon, but that's for next time.
Wednesday, November 28, 2018
Let me introduce myself
My name is Beth. I am a 56 year old Ginger. Born in the USA but living in Canada. In 2010 I was first diagnosed with stage IIIA Surface Spreading Melanoma with micrometastases in the Sentinel Node in my left groin. Recently, after almost nine years of living NED I found a lump in the left groin and now have become a member of the group who have Loco-Regional Recurrence. That's my medical status but I haven't really introduced myself have I?
I grew up in the time where sunscreen was Coppertone with an SPF of 2. The preferable choice was baby oil anyway. A blistering sunburn Monday morning at school meant you had a great weekend. Our family had a cottage on Lake Erie and every weekend was spent there. In the boat, on the beach, in the water, sun, sun, sun. I guess what I am trying to say is I was a walking billboard for Melanoma. I was usually healthy, mother of three kids, house full of dogs, somewhat reserved about my personal life but known for usually having a smile on my face. My grandfather was a doctor and my family was full of medical professionals so I was never intimidated by any health professionals and always advocated for the best care for myself and my family. Never afraid to question anybody, in a polite respectful way of course, most of the time. My family lived through some very tragic circumstances starting early in my life so I became a "strong" person or better yet someone who recognises that just like good times, bad times don't last and they sometimes prepare you for what is coming. Even though you can't live your life waiting for the bad turn to come. I think this gives you a general idea of me. My outlook is optimistic though practical, when faced with a problem my first reaction his how to "fix" the issue. I tend to always find a reason to smile or laugh because I know that is the only way to contentment. I believe that no change is bad or good of itself it is how we meet the change and adjust is one of our defining characteristics. Melanoma was a huge change in my life, how I see myself, how it changed me, how I have integrated this disease in to my life instead of letting it define who I am is why I have started this blog and what I want this blog to be about.
I hope to help people who have been diagnosed, those who care for those diagnosed, those learning about the disease, anyone know that if I consider myself to be more than a Melanoma or Cancer survivor so can they. Disease does not have to define us, it's just part of who we are. Sometimes it takes more of our energy and thought but not all the time. Sometimes it's just our quiet empathy, our desire to warn others and unique appreciation of what life truly means to us that may be the give away that we have been changed by disease. I hate this disease but in many ways like the person it has forced me to become.
I grew up in the time where sunscreen was Coppertone with an SPF of 2. The preferable choice was baby oil anyway. A blistering sunburn Monday morning at school meant you had a great weekend. Our family had a cottage on Lake Erie and every weekend was spent there. In the boat, on the beach, in the water, sun, sun, sun. I guess what I am trying to say is I was a walking billboard for Melanoma. I was usually healthy, mother of three kids, house full of dogs, somewhat reserved about my personal life but known for usually having a smile on my face. My grandfather was a doctor and my family was full of medical professionals so I was never intimidated by any health professionals and always advocated for the best care for myself and my family. Never afraid to question anybody, in a polite respectful way of course, most of the time. My family lived through some very tragic circumstances starting early in my life so I became a "strong" person or better yet someone who recognises that just like good times, bad times don't last and they sometimes prepare you for what is coming. Even though you can't live your life waiting for the bad turn to come. I think this gives you a general idea of me. My outlook is optimistic though practical, when faced with a problem my first reaction his how to "fix" the issue. I tend to always find a reason to smile or laugh because I know that is the only way to contentment. I believe that no change is bad or good of itself it is how we meet the change and adjust is one of our defining characteristics. Melanoma was a huge change in my life, how I see myself, how it changed me, how I have integrated this disease in to my life instead of letting it define who I am is why I have started this blog and what I want this blog to be about.
I hope to help people who have been diagnosed, those who care for those diagnosed, those learning about the disease, anyone know that if I consider myself to be more than a Melanoma or Cancer survivor so can they. Disease does not have to define us, it's just part of who we are. Sometimes it takes more of our energy and thought but not all the time. Sometimes it's just our quiet empathy, our desire to warn others and unique appreciation of what life truly means to us that may be the give away that we have been changed by disease. I hate this disease but in many ways like the person it has forced me to become.
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