I keep waking up with really bad headaches early in the morning hours, around 4 or 5am. This morning it was 4 and the pain was so bad. I tried a cold wet washcloth over my eyes and forehead... it didn't work. I'm only allowed to take Tylenol (Acetaminophen) ... no ibuprofen, naproxen, aspirin or other OTC pain relief which a normal person not undergoing chemotherapy may take for a headache. I couldn't find the tylenol.
When I woke up again around 7am, the pain was still intense. To add to it, the nerve pain started in my neck and back, like spasms of stabbing episodes. It's horrible and it's been happening since I started chemo. I don't know if it's the muscles or the nerves, but it hurts like hell. So breakfast this morning included narcotic pain relief and valium. Nothing like waking up in such intense pain that the first thing you grab for is a pill bottle. :'(
I'm also experiencing a few other side effects that totally suck. For one, my nose runs continually and has for weeks. It's not like a runny nose like you would get with a cold - this is thin, clear liquid that continually runs. In normal people, there would be boogars! In a chemo patient, the nose hairs fall out and it just runs and runs and runs... I also have mouth sores... on the inside of my mouth, on the sides, in the edges of my lips... it feels like my gums are peeling and they feel "fuzzy" no matter how much I brush my teeth... and my scalp is so tender. I sleep with a super soft blanket on top of the pillow, otherwise I can't sleep. The tiny hairs that remain on my scalp hurt on the pillow and get very irritated at night.
Then there's the night sweats and insomnia... whew... it was very cold last night and I slept with a fan on me the whole time, both freezing and sweating. I wake up with the bed so wet that it literally feels like someone took the blanket and sheet out of the washer without drying it. This means lots and lots of bedding washing and it also means my skin is suffering from being sweaty every night of my life. I even moved downstairs into the basement bedroom to be in the coolest part of the house. None of it matters, nothing I try helps, I sweat and sweat and sweat.
Let's talk about "chemo brain" too. This is a level of forgetfulness and memory loss that's nothing like I've ever experienced. Chemotherapy is poison. It kills cells throughout the body, including lots of good cells, in order to try to kill off cancer cells. Those good cells include brain cells. I have a big planner I keep dates and lots and lots of notes in. If it wasn't for that planner, I wouldn't know what's going on half the time. I forget what I'm saying mid-conversation, lose track of what I'm doing in the middle of a task, and can't seem to focus enough to read a book. It's all very frustrating.
I may not be vomiting thanks to the 5 different anti-nausea and vomiting medications I'm on, but the other side effects suck too. I'm also GAINING weight... right smack in the stomach... each chemo session is followed by 4 days of steroids to boost the body. Steroids = weight gain. I've cut out all sodas from my life, most sweets, and try to make healthy eating choices, but it's hard when a salad is $6 and a burger is $1.
I've also been struggling so much with all of the articles and news coming out about the effectiveness of THC and CBD in reducing tumors, completely eradicating cancer, and curing people - not to mention treating the side effects of chemo I'm struggling with, like insomnia and pain... and yet, I have no access to medical marijuana here in KY. The key is that when it is used to treat cancer, it is in an oil form or pill form, taken like a regular daily medicine. There is no "recreational" access to medical forms of marijuana and without KY making major changes, I can't get access to it. It frustrates me because I want to be cured, I want to be healthy, and I want to be able to sleep at night. If people in medically legal states are literally being cured of cancer, how is that fair to others in non-legal states?
On a more positive note, I've been hunting and found lots of "refresh the spirit" programs for cancer patients. A lot of them provide short trips for the patient to go somewhere and spent time with other patients to form new friendships, discuss the fears and stresses and worries that are cancer, along with celebrate journeys and milestones.
One of the programs I found is described as "Offers young adult cancer fighters and survivors (ages 18 to 39) a free week-long outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."
Doesn't that sound amazing? I've found programs in Montana, Wyoming, Indiana, and Hawaii. Some of them are for during treatment - customized to be "easy" so that a patient undergoing chemotherapy can do outdoor activities with other patients - and some programs (like the Hawaii one) are for after treatment is done, when strength is being regained.
I love the idea of retreats for cancer patients. Cancer is such a stressful, debilitating, angry disease. It affects every area of life... home, relationships, intimacy, children, physical activity, career, even the ability to drive and be independent is taken away... it's easy to get lost in the treatments and the sickness and the pain. These retreats sound like a breath of fresh air and have the ability to rejuvenate the spirit and make a patient forget about all of the worries and stressors and pain for a few days at a time. I hope I get to participate.
When I woke up again around 7am, the pain was still intense. To add to it, the nerve pain started in my neck and back, like spasms of stabbing episodes. It's horrible and it's been happening since I started chemo. I don't know if it's the muscles or the nerves, but it hurts like hell. So breakfast this morning included narcotic pain relief and valium. Nothing like waking up in such intense pain that the first thing you grab for is a pill bottle. :'(
I'm also experiencing a few other side effects that totally suck. For one, my nose runs continually and has for weeks. It's not like a runny nose like you would get with a cold - this is thin, clear liquid that continually runs. In normal people, there would be boogars! In a chemo patient, the nose hairs fall out and it just runs and runs and runs... I also have mouth sores... on the inside of my mouth, on the sides, in the edges of my lips... it feels like my gums are peeling and they feel "fuzzy" no matter how much I brush my teeth... and my scalp is so tender. I sleep with a super soft blanket on top of the pillow, otherwise I can't sleep. The tiny hairs that remain on my scalp hurt on the pillow and get very irritated at night.
Then there's the night sweats and insomnia... whew... it was very cold last night and I slept with a fan on me the whole time, both freezing and sweating. I wake up with the bed so wet that it literally feels like someone took the blanket and sheet out of the washer without drying it. This means lots and lots of bedding washing and it also means my skin is suffering from being sweaty every night of my life. I even moved downstairs into the basement bedroom to be in the coolest part of the house. None of it matters, nothing I try helps, I sweat and sweat and sweat.
Let's talk about "chemo brain" too. This is a level of forgetfulness and memory loss that's nothing like I've ever experienced. Chemotherapy is poison. It kills cells throughout the body, including lots of good cells, in order to try to kill off cancer cells. Those good cells include brain cells. I have a big planner I keep dates and lots and lots of notes in. If it wasn't for that planner, I wouldn't know what's going on half the time. I forget what I'm saying mid-conversation, lose track of what I'm doing in the middle of a task, and can't seem to focus enough to read a book. It's all very frustrating.
I may not be vomiting thanks to the 5 different anti-nausea and vomiting medications I'm on, but the other side effects suck too. I'm also GAINING weight... right smack in the stomach... each chemo session is followed by 4 days of steroids to boost the body. Steroids = weight gain. I've cut out all sodas from my life, most sweets, and try to make healthy eating choices, but it's hard when a salad is $6 and a burger is $1.
I've also been struggling so much with all of the articles and news coming out about the effectiveness of THC and CBD in reducing tumors, completely eradicating cancer, and curing people - not to mention treating the side effects of chemo I'm struggling with, like insomnia and pain... and yet, I have no access to medical marijuana here in KY. The key is that when it is used to treat cancer, it is in an oil form or pill form, taken like a regular daily medicine. There is no "recreational" access to medical forms of marijuana and without KY making major changes, I can't get access to it. It frustrates me because I want to be cured, I want to be healthy, and I want to be able to sleep at night. If people in medically legal states are literally being cured of cancer, how is that fair to others in non-legal states?
On a more positive note, I've been hunting and found lots of "refresh the spirit" programs for cancer patients. A lot of them provide short trips for the patient to go somewhere and spent time with other patients to form new friendships, discuss the fears and stresses and worries that are cancer, along with celebrate journeys and milestones.
One of the programs I found is described as "Offers young adult cancer fighters and survivors (ages 18 to 39) a free week-long outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."
Doesn't that sound amazing? I've found programs in Montana, Wyoming, Indiana, and Hawaii. Some of them are for during treatment - customized to be "easy" so that a patient undergoing chemotherapy can do outdoor activities with other patients - and some programs (like the Hawaii one) are for after treatment is done, when strength is being regained.
I love the idea of retreats for cancer patients. Cancer is such a stressful, debilitating, angry disease. It affects every area of life... home, relationships, intimacy, children, physical activity, career, even the ability to drive and be independent is taken away... it's easy to get lost in the treatments and the sickness and the pain. These retreats sound like a breath of fresh air and have the ability to rejuvenate the spirit and make a patient forget about all of the worries and stressors and pain for a few days at a time. I hope I get to participate.