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.
Wednesday, December 12, 2018
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.
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