Look Good, Feel Better

The American Cancer Society has a program called "Look Good Feel Better." My daughter signed us both up for one of their sessions at the cancer center in Brighton a few months ago, right before I was going to start chemotherapy. When we arrived we were greeted by a friendly woman and each given a zippered bag full of makeup that is donated by companies who I am sure hope to hook you on their products and thereby profit from your misfortune. My daughter said "Sorry mom, they are going to have you put makeup on." I have never been big on makeup. It just seems like too much trouble. There were several styles of head coverings and some donated wigs on the table as well.

The purpose of this program is to teach you how to look good after your hair, eyebrows and eyelashes have fallen out, your skin is blotchy and pale, and you pretty much look like death warmed over. There were three or four other women there. We introduced ourselves and talked about what kind of cancer we had and the treatments we were undergoing. The facilitator showed us how to apply concealer for those pesky dark circles that would plague us in months to come. We also learned how to draw semi realistic looking eyebrows, a real skill let me tell you. It did not take us long to start joking around and having fun. After we were finished with the makeup we were encouraged to try on some wigs. This is where it got real crazy. I put on one wig that made me kind of look like my grandmother. Then I tried one that made me look like Phyllis Diller. None of them were anything that I would wear in the privacy of my own home, let alone out in public. I'd go around bald first. My daughter found a lovely long blond wig. Who knew she could look so good as a blond?

I secretly thought that I would not need to use any of the tricks that I learned, but was glad that I had gone. I did go to the salon at St. Jo hospital in Ann Arbor, where they specialize in wig fittings and sell affordable wigs for women going through treatment. I bought a cute wig that looked similar to my own hair, just in case my hair actually did fall out.

Fast forward a couple of weeks. My hair did fall out. My eyebrows began to slowly disappear. My skin became blotchy and I developed dark circles under my eyes. By that time I really did not care very much about how I looked. I mostly wore a chemo cap of some sort and left the wig in the box it came in. I began to notice that people looked at me and treated me a little differently when I was out in public. One woman at Taco Bell gave me a coupon for a free meal that was meant for someone who had donated to a cause they were promoting. She said "I'm giving this to you just because I feel like it." A cashier at the local drug store gave me back a dollar in change when I should have gotten ninety cents. People offered to help me with my groceries. I began to wonder, is this how I want people to see me? Part of me said "Yes! Feel sorry for me! I have been horribly wronged by the karmic forces of the universe and I want everyone to take pity on me." Another part of me did not want to feel sorry for myself or to have others feel sorry for me.

One Sunday morning I was planning on going to a meeting and I decided to draw some eyebrows, cover up the dark circles and put my damned hair on. I did feel a little better. My friends commented on how good I looked. I went to the grocery store after the meeting and ran into an old friend of my daughters who I had not seen in a while. She did a double take when she saw me. She said "You look great! I hardly recognized you!" Kind of a backhanded compliment, don't  you think? She asked me how I was doing and my first instinct was to tell her all about the cancer and how crappy my life was. But I said "I'm good, how have you been?"

Sometimes I make an effort to spiff myself up a little before I go out, mostly I don't. When the weather started to get warm I realized that I was putting a hat on because I think that others are uncomfortable with my bald head. I decided that I will think about my own comfort. What you see is what you get. This is who I am today. I don't want pity. I want to live in the moment and for others to accept me as I stumble along on this bumpy detour my life has taken.

No More Chemo

I had three cycles of taxotere and cytoxan, with a chaser of neulasta. I was originally scheduled to have four cycles, but when it came time for the fourth one my doctor postponed it due to the fact that I was still so debilitated by the first three. He said that if I did not feel better in another week we would skip the last treatment and move onto radiation. I happily called a week later and let them know that I was not coming in for the last dose. I was still so weak and tired that I knew it was time to stop. My hemoglobin and protein levels were very low, and my white count was high. My hands and feet were numb and tingly. My fingernails changed color and were sore and brittle. The oncologist felt that I had received 85 - 90% of the benefit of chemotherapy, and I was willing to accept that it was enough.

Several people chastised me for my decision to forego that last treatment. Most of them have never had to go through chemotherapy, nor are they medical professionals, so their credibility was questionable. I had to trust myself to know what was right for me. I know that others go through much more in their fight against cancer. I watch my daughter return to the hospital every few weeks for more of the toxic chemicals that are extending her life and I am amazed at her ability to go on. I am sitting at the hospital with her now on day four of yet another round of chemo. Unless some miraculous cure is found she will spend the rest of her life fighting this disease. I know that at some point she may decide that she has had enough. I will not blame her.

It's been seven weeks since my last dose of chemotherapy and I am just beginning to feel like I have a little bit of energy. I can walk up and down the stairs without having to sit down immediately. I still take a nap every day, but I am able to fix a meal or do a load of laundry or pull few weeds. I can push a grocery cart around Meijer Thrifty Acres. My hair has started to grow. I used to take these things for granted, but no more.

I have an appointment to have my port removed and another appointment for a bone density test, which the doctor requires prior to prescribing hormone suppressing drugs. I am preparing to undergo several weeks of radiation treatments, which I understand will be very tiring, but I figure after chemo it will be a walk in the park. That is if I actually can walk in the park.

Chemo Brain

It's a real thing. The mental fog, confusion and memory loss that can accompany treatment for cancer. Patients have known it for years, but medical professionals have only recently studied the phenomenon in an attempt to explain it. It's my explanation for the fact that I have not written in over a month. I have thought about writing, but the ability to follow through and actually sit down at the computer and form an intelligent sentence has eluded me. Even now I am not sure if I am able to pull together the thoughts that have been swirling around in my brain.

In the last few weeks I have had conversations with family members that I do not remember. I struggle to remember what day it is. I have played word games in an attempt to keep my mind sharp, but I don't know how much it helps. I like to think of myself as a fairly intelligent person, and it is quite disconcerting to feel so slow and inept. A friend told me once that we cannot take pride in our looks or intelligence, as it is a result of having the blind luck to fall into the deep end of the gene pool. I am humbled by the way that chemotherapy has knocked me off my high horse.

My daughter has told me that she loses days at a time while having chemo, and I know for a fact that she has done things while on chemo that she has no recollection of. Like the time she did some online shopping while at the hospital receiving her infusions. When the things started to arrive in the mail she was pleasantly surprised, as she did not remember ordering much of it. I am hoping I have not rashly spent any money that I cannot account for.

I truly hope that I will regain my ability to form a coherent thought without a struggle. My snappy comebacks are a defense mechanism that has sustained me throughout my life, and I don't have a lot of other tools to work with. My energy level is at an all time low, and I want to believe that as my energy returns (as my doctor has assured me that it will even though I feel like I'll be a couch potato forever) that my mind will recover as well. If not, I apologize for whatever inane or unintelligible drivel I may have to say.

Stupid Cancer

My daughter has completed three cycles of chemotherapy, after two cycles of chemo that did absolutely nothing but make her incredibly sick. She had a scan a couple of weeks ago and the results were encouraging. The tumor in her lung has been considerably reduced in size. We are all thankful for a little bit of good news. She will have at least one more cycle of chemotherapy before another scan, which will hopefully show more reduction in the tumor.

While we waited for the results of the scan she attended the OMG Stupid Cancer Summit in Las Vegas. Stupidcancer.org is dedicated to serving the needs of young adults with cancer. Young people who are diagnosed with cancer face some unique issues - loss of fertility, having young children to care for while in treatment - among others. This is her second time attending. Last year she came home from the conference saying that it was a life changing experience. Being with several hundred other young people who are dealing with cancer was so good for her.  My daughter thinks that even though I have cancer I "don't really get it." I beg to differ.

I understand arrogance of youth; the terminal uniqueness that begins when you are a teenager. The feeling that nobody understands you, your problems are worse than those of anyone else, your parents are clueless. What the young don't get is that no matter how old you are, inside you are still that young adult with hopes and plans for your life. That you want to live a lot longer even when you are over forty. That emotions have no age limit. We all feel the same things when faced with the kind of adversity that cancer brings into your life.

I feel fear -that I my daughter will die and I will be faced with raising her children. I am afraid that I will die from this disease and then what will happen to them? I am afraid of the effects that these chemicals are having on me. I am afraid of more surgery and radiation and the effects of that on my already ravaged body.

I feel frustrated by the fact that my dreams for these later years of my life have been sidelined because of the things that have interfered with those plans. I am frustrated with having to care for a three year old and a teenage grandson who has a developing case of "I know it all and you are clueless Mamaw." I feel frustrated with my inability to do much more than take a nap.

I feel sadness that my sexuality has been forever altered by the way that I have been carved up and poisoned to the point that I am reluctant to have my husband touch or look at the results. I am sad that my grandchildren have to watch their mother and grandmother go through this. I am sad because I am older, and I don't have as much time to fully recover from this ordeal as I would have twenty years ago.

Most of all I am angry. I am filled with anger at the shitty karmic hand I have been dealt. At the drug companies that are profiting from my treatments. At the way we have poisoned our environment and contributed to the rise in cancers of all kinds. I mostly direct this anger at that ornery grandson and our dogs whose barking drives me to distraction.

I also feel hope and gratitude. Hope that these treatments will give us all more time together. Hope that I can overcome the anger and fear. Hope that love will win out in the end. Gratitude for all of the love and support and important life lessons that are revealed by a cancer diagnosis.

And for you youngsters who think that I don't get it you are so wrong. I get it. Cancer is stupid no matter how old you are.

Cancer Tips for Dummies

So I have a binder full of information regarding breast cancer, chemotherapy, radiation, and more. At each and every doctor visit they like to give you packets and folders full of advice and resources. Some of it is quite helpful, some redundant and some a little ridiculous. There are shiny pamphlets and flyers with stock photographs of cheerful looking doctors, nurses and patients telling you things that you might need to know while you are traveling the rocky road of cancer treatment. I am here to tell you that I am not so cheerful and I don't think that they should be misleading us with those images.

I have a whole section in my binder for test results, another for nutrition and yet another for drugs and side effects. As I was looking through the binder today I came across a page titled "Cancer Related Fatigue." The question, in big bold letters, "How Do I Know If I Am Fatigued?" jumped right off the page at me. Are you kidding me? I think if you even have to ask the question the answer must be no. There is a check list of indications that you might be suffering from fatigue.

1. Difficulty climbing stairs or walking short distances - check
2. Difficulty paying attention or concentrating - check
3. Shortness of breath after light activity - check
4. Difficulty performing simple tasks such as cooking, cleaning or taking a shower - check
5. Unable to do much during the day as usual - check
6. A desire to sleep more - check
7. Slower speech - check
8. Feeling like crying or depressed - check
9. Paleness or shakiness - check

I don't think it's rocket surgery figuring out that you are fatigued, unless maybe you have been laying on the couch for most of your life anyway. This might seem like just another day in the life. But I am here to tell you that I AM FATIGUED! I dragged myself to town yesterday for the first time in a week, just to buy some knitting needles at the local yarn shop. When I got home I slept for two hours. Today I wanted to go to the grocery store and get a few things. I made the mistake of going to Meijer Thrifty Acres. I barely made it through the store. I was sure that someone would notice the way that I was shuffling along, leaning into my cart with my wig slightly askew and call for assistance. No such luck. Then I got in the check out line, where the young man ringing up my groceries was far too chatty and seemed to expect me to respond to every single thing he said. I just couldn't do it. Then he was packing my bags so full that I could barely lift them into the cart. I had to ask him to please not do that. By the time I got to my car I wanted to cry and then take a nap right in the parking lot (see numbers 6 & 8).

Really, most of the information in the binder is helpful. I read through it before I started treatment, and now I refer back to it as needed. It is good to know that the things I am experiencing are a normal part of the process, and that there are things I can do to ease the symptoms. I wish they could just put me into a drug induced coma until I feel better. Is that too much to ask?

Chemotherapy - Round Two

So, here I sit at the cancer center having my second round of chemotherapy. I met with my oncologist first and discussed all of the side effects that I experienced after my last treatment. I told him about my 1 a.m pity party and my decision not to have any more poisons pumped into my body, and my subsequent rethinking of the issue. He is lowering my dose of neulasta, the drug that boosts my white cell production. This should happily reduce the pain that I had after my last dose.

I spent the last couple of days doing nice things for myself. I bought furniture for my new deck so that I can sit out in the sun while I am recuperating.  Yesterday I spent some time preparing to feel sick for the next week. Stocked up on Popsicles and juices. Did my laundry. Organized my arsenal of pain relievers, stool softeners, nausea meds, and hemp oil. Fluffed my pillows.

My daughter is here with me today. It's a change for her to be in the not so comfy chair while I am comfortably reclined. She calls me a part timer, since I only come for a few hours one day, while she has four long days for every cycle of her treatment. I am happy to be the junior partner on this cancer team.

I hope to get through the next week a little easier than the last time, since I know what to expect and can maybe deal with things a little better. I will refrain from partying in the middle of the night and posting to Facebook in a drug induced state of mind.

Bad Hair Day

I woke up to find my pillow covered with hair. Not cat or dog hair. My hair. I tentatively tugged at a few strands on my head and out they came with no resistance whatsoever. The doctors told me I would lose my hair, and I know several other women who have had the same chemo drugs as I am on who lost their hair. Still, it's a shock when it actually happens. It's like a  dream I had once where my teeth were all loose and falling out and all the next day I kept running my tongue around my mouth to make sure that my teeth were secure. Only this time I wasn't dreaming.

I had a wig ready, purchased at the salon at St. Joseph hospital in Ann Arbor. Very cute and sassy, my husband says. I also have amassed a small collection of hats, waiting for the day when I finally needed them. I stood in the bathroom for a long time pulling strand after strand of hair out and dropping it into the waste basket. I cried quite a bit. One more thing to grieve in this damned process.

So I took the hair clippers downstairs and told my husband he needed to shave my head. I did not want to go through days of watching it fall out in my dinner plate or washing down the drain while showering. My daughter, with her own bald head, took pictures while my husband buzzed me with the clippers. He was a bit nervous about it. I have cut his hair for years. He said he never thought I would let him cut mine. At one point I took the clippers from him and did a few swipes over my skull. My husband asked what I was doing. My daughter said I was taking control.

When the job was done I reluctantly ran my hand over my head. I did not like the feeling, like my husbands face when he hasn't shaved for a couple of days.  My husband looked into my eyes for a long moment and said "You are so beautiful." I cried some more.