I have debated with myself over how much to share of my journey with chemo. I have learned in the past few weeks that each person has their own story to tell. I expect one day chemo will seem barbaric as a treatment for cancer, but for now it is one of the weapons used by doctors against a formidable foe ~ cancer. One doctor told his patients, "I don't know what chemo will do to your body, but I do know what will happen to your body if we do not do what we can to get rid of the cancer." I was told by the Mayo oncologist that for me the chemo is for prevention purposes. Having the double mastectomy is the number one thing I could have done to rid my body of cancer. Chemo should take care of any random cancer cells, etc. in the body. Chemo is part of the battle plan.
Chemo affects each of those who reluctantly join this club in different ways. Yes, there is knowledge that how the chemo drugs affect the body is in some ways universal ~ thus the extensive Chemotherapy Resource Guide I was given. But in other ways how the chemo drugs affect the body is individual. There is a "we don't know" aspect to pumping poison into your body.
When we had our "chemo class" the nurse went over all the side effects and how to manage them. What side affects were dangerous, what ones required a trip or phone call to the doctor. What was considered "normal." I listened, but tried not to keep a running list in my head.......or heart. I tried to take a "wait and see" approach. Four weeks in I ordered a short book entitled, "Chemo: Secrets to Thriving". It pretty much covered what was in the spiral notebook I had been given, plus a few more side effects that were in the "hard to talk about" category. Both guides have been helpful.
It was not until the second treatment that I was hit hard with a number of side effects that kept me horizontal. When the 2nd infusion knocked me off my feet, I began a google search for those who had personal stories to share. I did this because the few people I knew who had gone through chemo either did not talk about it, or said "it was not so bad". I did know of one person who spent a lot of time in bed and someone else who's only symptom was severe fatigue. I needed more info.
I learned that there were plenty of people who were suffering through the treatments. One younger woman remembered feeling so ready for chemo to get started! She had a fighting spirit! And then she became extremely ill and remembers that after one session where she spent 6 days in bed, she walked into the kitchen and said something to her husband and he actually cried to see her up and hear her talk. Everyone has their own story to tell and the one who "breezes through" is no different than the one who suffers greatly. Getting to the other side............that is the goal. Just getting through to the other side.
One of the biggest symptoms I have had to deal with is pain. I was told by a nurse that I would not have pain. She was completely wrong and even though it is not one of the more common symptoms, it is a side effect of the chemo I have been given. And then there is the OnPro injection that helps your body produce white cells in the bone marrow. The bone pain from that was intense. After three days of it I called my doctor and was told to take Claritin. It seems the On Pro produces high histamines in the body and the Claritin reduces those, thus reducing pain. That has been helpful to take the edge off of the bone and joint pain so I can sleep at night. The muscle and nerve pain fluctuate. There is a concern that the nerve pain will be permanent so that is watched closely.
Another continual side effect has been fatigue and exhaustion. For the first 6 days it has been major to the point that I needed help getting around, my legs would not hold me at times. After day 6 (so far) weakness improves enough that I can be up more, help myself more. Eventually energy has steadied 2 weeks in so that I have one week that is more normal before the next treatment. Will that continue? We are hopeful.
A variety of other side effects have popped up. Nausea was minimal with the first treatment but pretty strong the first week of the second treatment. I have not vomited at all and felt like I was eating enough, although I lost 6 lbs during that time. Smells are strong to me, taste is mostly bland. Textures are difficult. You find what you can tolerate and you eat it. Food is medicine for your body! For me, the essential oils of ginger and peppermint put into a carrier oil has helped. I rub it on my stomach as often as needed. There are meds that can be used also.
I started losing my hair just 10 days after the first treatment. We shaved my head 5 days later and I have been wearing headcovers since. My eyebrows are thinning out and most hair is gone on my body.
Tinnitus has increased and in my right ear at times there is a "tweeting bird" sound. Not kidding. My vision is blurry and I blink a lot. That should improve later. I have had "chemo brain" to some degree. I can tell mostly when I try to pull up words or I am watching Wheel of Fortune or Jeopardy! Slowwwww reactions. I can tell when I sit down to write on my blog. The words don't flow as easily.
I have had sore throats, runny nose, sore mouth, oral thrush, and everything, including water tastes metallic. There are salt/soda water gargles, meds to kill thrush, and I put just a small amount o 100% white grape juice in my water to make it drinkable. I have had mild fevers, headaches, soreness on skin from chemo leaving my body through urine and stools, nightmares, and sadness and anxiety. The short amount of time I am on steroids, sleep is hard to come by.......so I am thankful it is brief. After the first few days, I sleep 9-10 hrs a night and usually take two naps daily. My skin has reactions to the chemo and the dermatologist was helpful for me as I had radiation "memory" reactions plus the severe reaction to the tape used during surgery to have the port put in.
Mostly, this is my journey with chemo so far. One thing I am learning? It changes from day to day and often hour to hour. The body is doing what it can to function and I am doing what I can to help. For me the first 6 days are the worst, and I try to just breathe, rest, and pray my way through it. It is good to remember, this too will pass! We will get to the other side.
What helps to get to the other side? Information is a good place to start. Good support, a loving caretaker, and the prayers of family and friends are so important. And be sure to advocate for yourself. Be kind to yourself. Make sure you keep your eyes on that light at the end of the tunnel.
In the midst of the last "chemo crap storm", as our oldest daughter calls it, Jesus reminded me I was not alone with this image and message.
He is the Light
I hope this has been somewhat helpful for those who are curious and for anyone who is going through, has been through, or will be going through treatments. Our daughter Beth's words, "chemo crap storm" define it quite well, but like any storm, it will end. In the midst of it all it we may be tossed by wind and waves, but it will end. This too shall pass.
