History: Chemotherapy - Infusions

October 29, 2006

CHEMOTHERAPY

I just thought that sometime I will forget, as happens, what this time was like. I want to be of help to those I may encounter in the future who are going through cancer, so I had better write down a bit.

Having cancer is disorienting: you don’t know how to plan your life. As if suddenly the rush and whirl of life is suspended in freeze-frame, and you’re caught there in the air gaping like a fish. All major decisions must be delayed; you are slung from cosmic ropes like marionettes awaiting the next flip of the cords. In that waiting, pondering what it would be like for your child to grow up without her mother, for your husband to raise your daughter alone.

But you can’t think about that, you can’t think that way; you are determined that you will be there for all of that life ahead, so you charge ahead as soon as the energy revives, and then another chemo appointment comes and you are flat on your back waiting again.

As the drip finishes in the hospital each time, my nostrils start to burn something fierce, and all the involuntary snorting and gagging does nothing to dislodge the burning. I start to feel weak as they unhook the tubes and tell me to take a deep breath, yank the needle straight out of my chest. They cover the large needle hole with gauze and I press on the pad, hoping the blood will not run down into my shirt again on the way to the car. All the strength has left my body. I just want to lay down and find oblivion. My head hurts. My husband walks me down to the car and I climb wearily into the passenger seat, slumping against the door. Sometimes I throw up that night. The next day I go in the morning and get the Neulasta shot in my belly fat. If it is cold, it really stings. Sometimes the nurse will warm it in their hands before giving it, and that helps.

By that afternoon or night, the Neulasta has kicked my butt, leaving my body aching all over like I have the flu. My throat and neck get swollen and it aches to take a deep breath. This lasts for about three days. I also get a shallow, nonproductive, restricted cough that won’t go away, but lessens before the next session. I don’t want to talk to anyone for the first week because my throat is filled with mucus and I drool constantly, spitting and gagging unless I am eating. I lost weight after the initial surgery and chemo, because of the nausea, but since then I have gained 20 pounds from eating to quell the nasty feeling in my mouth, throat and GI tract. It’s better than getting too skinny, I know, but it’s just an exhausting undertaking to swap out all my clothes again for my dreaded pregnancy clothes. I miss my favorite jeans.

Prednisone: Each day after chemo for five days I have to take Prednisone, a sick nasty pill I can only choke down with gulps of chocolate milk. I dread it every morning, gagging if I look at the bottle. By the time the Neulasta and initial chemo effects have worn down, the steroid pills have worked my shoulders and upper back into tight whorls of knots and I try to set up a massage appointment, one of the loveliest parts of life lately. ;) The massage seems to help, and my oncologist gave me a prescription, so it's paid for by my insurance, hooray!

Stomach Pain: Dr. Milder had given me lorazepam/adivan and promethazine for anti-nausea, but they both really knock me silly for a long stretch of hours, so now I rarely take them. I take an herbal remedy pill that coats my stomach, drink “Stomach Ease” herbal tea, and with each meal take a digestive enzyme from the Seattle naturopath, Dr. Labriola. My entire GI tract is huge, swollen, distended from being killed off by the chemo. I drink kombucha, a fermented tea (guava is my favorite) and eat yogurt to help restore the natural flora. It eases after a few days and lowers into a vague stomach unease. I've also found VeggieDelight helpful, a blended jar of fermented vegetables they sell at our local health food store.

Insomnia: The prednisone gives me insomnia and I often can’t sleep until 1am. For a while, the calcium/magnesium pills from the naturopath were helping me to sleep, but the last couple of times it just hasn’t been working. A friend just gave me a little baggie of melatonin, and that has been working like a charm. Melatonin isn’t addictive, also. I read somewhere that sleep is one key factor in helping cancer patients recover, so I value it highly right now. I think the melatonin might cause crazy dreams!

Vitamin D: I’ve also read about the importance of vitamin D, so I’m trying to get myself and my baby girl out into the sun to soak up some rays every afternoon, after this first terrible week when I lay on the couch waiting. The sun feels so good. Now that it’s fall the air is turning very chill and we can’t expose our skin to its rays. Spring will be welcome. I read a few articles on PubMed and apparently the amount of skin cancers has decreased as people use more sunscreen - but the amount of far more serious, deadly internal cancers has increased because people aren't getting enough sun for their bodies to create sufficient vitamin D.

Neuropathy: My fingers started to turn numb after a couple of chemo sessions, and the numbness has crawled down my hands into my wrists and turned into a throbbing, aching pain. It’s nerve damage from the chemo leaking out of the capillaries in my fingers, caused by vincristine, part of the CHOP regimen. When the pain got to this point and my typing started to really go, Dr. Milder decided that I could skip the vincristine for my 7th chemo session. Glory be!! I was so happy. Massage seems to help me to regain feeling and to lessen the pain, too.

Acupuncture: My acupuncturist says he can help this neuropathy to heal more quickly, and I’ve been seeing him about every two weeks. He has helped a bit with the psycho “monkey brain” and insomnia from the steroids, and with the headaches, too. He also does points to support my liver and kidneys, under attack from the chemo. The needles do hurt, but I am getting used to it and it’s not too bad. Just tiny pokes. At first, the needles sent jolts of electricity down my wrists and ankles, quite painful, but that hasn’t happened for a while.

Music: My mom sent me a few CDs, mentioning a study in which music significantly relieved pain. I have found much relief in beautiful, soothing music, and have spent a while on ITunes, trying not to buy too many songs! It really helps. I have found that in the first week of pain and nausea, anything that takes me out of my body is helpful. Movies, thrilling novels, music, and entertainment all help to relieve the awareness of pain for a time.

Associations: The mental associations with chemo have just been growing every time we visit Swedish. This time we went down a day early to see Dr. Milder, and even though I had no chemo, I started drooling when we walked down the hospital hall. That afternoon I felt knocked out and weak, almost as if I’d had an infusion! If I look at something that I wore down to Seattle before it has been sent through the laundry, I gag. If I see or think about food I ate in the chemo infusion room, I’ll gag. I am taking care not to allow any patterns to build up around our visits, as much as possible; we stopped getting those delicious peach filled piroshkis after a couple of visits, and we try to buy lunch from a different store every time. The hospital provided lunches just make me nauseous at the thought! I wear different outfits each time, even though it’s hard to find something that is low cut enough for the needle to access the port on my chest. (Sometimes I slink into the hospital feeling like a hoochie-mama with all that sexy cleavage showing - oh well!) I don’t want to have to throw out any of my clothes just because they have too strong of a chemo association! Sometimes lately I’ll just be talking and if I say a certain word like “Prednisone”, “chemo”, or “nasal burning” I’ll involuntarily gag or snort through my nose as if trying to blow out the water that is burning.

The Good Parts: Chemo is working!! The Rituxan/rituximab has already done wonders, removing almost all pain from the main tumor within two sessions. Amazing. After the first eight days or so, I begin to feel a lot better and to really enjoy life again. The most lasting effects have been a general weakness, dizziness and lack of breath. They say it will take about a year to really recover my strength, but I definitely feel able to play and to enjoy life, just at a slower pace, the last week before I go back for the next chemo. This gives me good hope that a couple of weeks after my last chemo, I will be able to be up and to work and play with my family in a good way. I just have to take it slow and easy as we go.

Still ahead: One more chemo. One month of daily radiation, and surgery to remove the port-o-cath.