Can't Get Me Out of My Bed

So, I spent several days hiding in my room. Literally hiding under the covers wishing that I could just will myself to die right there. Everything hurt, the exhaustion was unbelievable, the psychic pain unbearable. My mouth was sore, nothing tasted right, and my stomach was a mess. I am normally a power napper, fifteen minutes and I am ready to rock and roll for the rest of the day. No more. I have been sleeping for hours at a time during the day, several times a day. When not sleeping I still lay in bed watching episode after episode of The West Wing. This is an excellent show, by the way, if you have any interest at all in the workings of our government. Not a lot of personal drama, just a look at life on a daily basis in the White House. I like to fantasize about a life with little drama, just high powered decision making and a security detail following me everywhere.

On Thursday I felt marginally better, I decided that maybe actually getting out of my pajamas and putting some clothes on might make me feel human. It was mostly a symbolic gesture, not really achieving the desired effect. I did make a trip out to the grocery store with the help of some friends, which only made me want to go back to bed for the rest of the day. I stayed up for a while, but my bed continued to seductively call my name. I was powerless to resist.

At 1:00 a.m. Friday, after several hours flailing around in bed trying to get comfortable, I made the command decision that I would refuse any further chemotherapy. I would not allow myself to continue being poisoned. I was firm in my resolve and said so on a breast cancer support page that I joined a few months ago. I received many responses to my decision, ranging from "please reconsider" to "you can get through this" to "you whiny baby, you piss me off". I heard the experiences of women who have gone through dozens of cycles of chemotherapy, radiation, numerous surgeries. Women who have been so sick that they were hospitalized. Women who have had recurrence of cancer in spite of all treatments. By the cold light of day on Friday I was beginning to feel a little better, and slightly ashamed of myself for my middle of the night pity party.

Today I took my dad and grandkids to the library. I only needed one nap when I got home. Dinner tasted okay. I have a week and a half until my next treatment. I am going to eat the most nutritious food I can, hydrate myself really well and prepare for the aftermath. I will bathe myself in gratitude for all of the love and support that I receive daily. And try to stay out of the bedroom.

Chemotherapy - Round One

I had a difficult time falling asleep the night before. I was instructed to start taking Dexamethasone (a steroid) the day before, day of and day after chemo. This helps prevent allergic reactions, increase appetite and prevent nausea. It can also interfere with sleep. Combined with the anticipation of chemotherapy it was about 3:00 a.m. before I fell asleep.

We arrived at the cancer center at 9:30. I was promptly escorted to a roomy cubicle with a view of a koi pond and picnic area. I settled into the recliner with my large bag of books, knitting, and laptop. My husband got the not so comfy chair. There are some benefits to being the gal with cancer. A very kind nurse began to hook up all of the tubing to my port that was required for the treatment. I was given an injection of an anti-nausea drug that supposedly lasts for three days. Then had to wait 1/2 hour before starting the first chemo drug, Taxotere. The Taxotere infusion lasted for about an hour, then the nurse started the Cytoxan. Each new drug caused a slight bit of anxiety as I went on high alert for any side effects. I really never felt a thing.

I can't say enough about the wonderful staff at the cancer center at Woodland in Brighton. I spent many hours in the not so comfy chair when I was there with my uncle a few years ago. The nurses are so kind, patient and knowledgeable. One of the nurses remembered my uncle and was so sorry to see me sitting in that recliner. They explained everything as the day went on, brought me warm blankets and gave me advice about what I might expect in the next few days.

I was finished and we were headed out the door at 1:30. It all went much easier than I expected. I was exhausted, but I insisted that my husband stop by the local yarn shop so that I could partake in some retail therapy before going home. I bought seven skeins of lovely blue yarn to make a sweater for someone I know with beautiful blue eyes who takes such good care of me.

I took a nap when we got home, ate dinner, then stayed up and watched some t.v. I went to bed thinking, "that wasn't so bad after all." One of the nurses suggested a dose of ativan at bedtime even if I didn't need it for nausea as it would help me sleep. I slept and woke up feeling fairly well. I had to return to the cancer center in the afternoon to receive an injection of Neulasta, a very expensive drug that causes your white blood cell production to go into overdrive. The chemotherapy lowers your immune system causing your white blood cell count to drop, making you prone to infections. By the time we got home I was feeling very tired and needed a long nap.

This is where things started to feel shitty. Food began to take on a taste sort of like a bad tin can, a cat food can that has not been washed out. I felt tired in a way that I cannot fully explain. I just wanted to lay down and never get up. I went to bed early, and woke up feeling like I had been hit by the chemo truck. One of the effects of the Neulasta is extreme pain in your bones due to the fact that your bone marrow is suddenly put on overtime cranking out those white blood cells. I tried relieving the aching in my legs and hips with aceteminophen, but finally took a vicodin later in the day which helped considerably. I laid on the couch or in bed all day as the fatigue increased, and by dinnertime I could hardly sit up in my chair. I went to bed, took another vicodin and atrivan slept about five hours.

Today I feel like every ounce of energy I ever had has been sucked out of me. I took a shower and tried to sit up for a while, but I had to come back to bed. It was all I could do to climb the stairs. I hurt, I am exhausted, and I am very weepy. This is like the worst flu, plus a hangover, plus the week I spent walking around the French Quarter in New Orleans until I thought I could not walk one more step.

One cycle down, three more to go.

Port Placement

I keep thinking that we will get some positive news at some point, but the bad news keeps coming. After three surgeries we still do not have clear margins. A mastectomy seems to be in my future after all. I could have chosen a mastectomy at any point in this hellish process, but I just wanted to do the least invasive thing at every point along the way.

Regardless, I start chemotherapy tomorrow. Yesterday I had a port placed in my chest, just below my collar bone. I was given the option of having a local or general anesthetic for the procedure. I chose a local. This required me to lie under a sterile drape while a guy cut open my chest and implanted a port under my skin, with a catheter threaded down into a vein. This allows the chemotherapy drugs to be spread throughout the body quickly and efficiently, without having to start an i.v. for every treatment. I have to say that it was a little unsettling. I didn't feel any pain after being poked with a needle injecting the local anesthetic, but I could feel the pulling and prodding as he implanted the thing. I kept trying to recite the Serenity Prayer while looking out the small hole they left me under the drape, but the words got jumbled up as I lay there crying, thinking about the toxic chemicals that would be pumped into me through the damned device. The whole procedure took about an hour. This picture is the actual device in my chest. Looks kind of like a spearheaded tapeworm snaking it's way through me. When I am finished with treatment the device will be removed. I may get a tattoo that says "Fuck Cancer" in very lovely calligraphy to cover the scar.

I foolishly planned on going to Whole Foods and Trader Joe's after we were done at the hospital. I wanted to stock up on some easy vegan foods for the days when I feel like crap. I did not anticipate how discombobulated I would be after the procedure. We did go to Whole Foods and pick up a few things, but skipped Trader Joe's and came home. I took a nap, ate some dinner and laid on the couch for the rest of the evening. This thing hurts more than any of my surgeries did. I took acetaminophen a couple of times, and finally this morning took some of the vicodin that I was prescribed after my first surgery. It helped a little but I still feel like I got hit in the chest with a baseball bat.

I am not looking forward to tomorrow. I feel like I am on a runaway train which might derail at any moment. I want to jump off as we go around a curve, but that will surely end badly as well.

It's Only Hair

So I had another excision last Thursday. I haven't heard the results yet, but I sure am hoping that she got all of the pre-cancerous cells that were still lurking in the margins. Regardless, I will start chemotherapy next week. My husband and I attended a session of "chemo teaching" today at the cancer center in Brighton. A very kind Nurse Practitioner schooled us on all of the possible side effects of Taxotere and Cytoxan (the two chemo drugs I will be infused with), and Neulasta which I will be given the day after treatment to boost my immunity. I can look forward to fatigue, nausea, mouth sores, diarrhea, hair loss, rash, changes in skin color and darkening of my nails. These are the most common side effects. There are many others that are far worse. Really, how much worse can it get you say? Other cancers in years to come. Fatal infections. Kidney failure. Severe allergic reactions. Death. The only side effect that I was hoping for - weight loss - does not seem to be high on the list of common reactions.

I feel perfectly fine, and it seems insane to me to voluntarily submit to all of these things that are going to make me sicker than I have ever been in my life. I have tried every way I can think of to rearrange the information so that I don't in fact have to put myself through this, but it always comes back to this - I have to give myself every possible chance to prevent the cancer from returning.

Since I have been assured that my hair will fall out, I decided to have some fun with it beforehand. I made an appointment with my hairdresser (a big shout out to Kara Weaver at the Town Shop in Howell!) to cut, color, and frost it in pink. I intend to enjoy it until it begins to fall out, then I will shave it all off. I have amassed quite a collection of hats to tide me over until it grows back.

Torture

From the minute that I knew I was pregnant with each of my children I was on a mission to protect them.  I stopped smoking with my first pregnancy. I took prenatal vitamins in spite of the unpleasant constipating side effect. I ate my vegetables and drank gallons of milk. I insisted on unmedicated delivery because I worried about the effect of drugs on the baby.

Once those babies arrived I stepped up my efforts, child proofing the house before they could even hold their heads up. I breast fed them and made my own baby food, and would not keep plastic bags in the house for fear of suffocation. I used spray bottles of "Monster Spray" to monster proof their bedrooms, and amazingly it worked. I could go on and on.

No matter how hard we try, we cannot protect our children from all of the possible harm that can come to them. I often say that it is a wonder so many children live to adulthood considering all of the dangerous things that can befall them. Then, when they are teenagers the fact that we don't kill them with our own bare hands is a miracle in itself. Now I am forced to watch as my daughter battles for her life, and there is not one thing I can do to help her. I want to reach down inside my daughter's lung and rip out this monster with my bare hands. Where is the Monster Spray for sarcoma?

It is such torture to watch as she struggles to breathe while poisonous drugs are flowing into her veins in a desperate attempt to shrink the tumor one more time. The chemo drugs make her nauseous, the drugs they give for nausea make her disoriented. She can't eat and her lungs are filling up from all of the fluids that they give her to protect her kidneys from the poisons they are pumping into her. The diuretics they give her to get rid of the fluid have her running to the toilet so often that it is hard for her to sleep. My own oncologist told me today that he has had great success with the treatment that they are giving my daughter now. I am holding onto those words, to the belief that she is not going through this hell for nothing.