So Now What?

My beautiful Erin

So I've finished chemo and radiation. Recovered from the exhaustion and horrible burns and my hair has nicely grown back. I had my first post treatment mammogram and it was all clear. Damn, it had better be after everything they threw at me! I started on estrogen suppression therapy which will continue for at least five years. I am a cancer survivor. Now what?

Cancer  changed me in so many ways. I find myself talking to people in a different way than I did in my pre-cancerous life. I smile at strangers. I listen more carefully. I notice things more acutely. I have let go of things that distract me from what is most important to me. I have narrowed my focus. I set three goals for myself - to finish restoring my house, finish my novel, and become a better knitter. All attainable, I think. I am going on with my life cancer free, and am going to assume that it will not return.

But, my daughter does not have that luxury.

A week ago we called 911 when Erin coughed up blood and could not catch her breath. When EMS arrived her oxygenation level was at 45%. In the emergency room Erin was asked if she wanted to be put on a ventilator if necessary. It became necessary and in the hope that whatever was going on could be resolved she consented to the ventilator. She was transferred to the critical care unit. She had probable bleeding in her right lung, possible infection and the sarcoma had metastasized to her abdomen. On Monday we had a very difficult conversation with one of the doctors, making some difficult decisions. End of life decisions. Decisions that you never want to see your child have to make.

Erin has been so incredibly resilient through her diagnosis and treatments. She was worn out, and the end was near. She said she wanted to be able to go home with hospice care. She did not want her four year old to remember her with tubes running everywhere. If she could not get off the ventilator she would not be able to go home. She let us know that if that was the case she wanted the doctors to keep her comfortable and let nature take it's course. On Wednesday morning it was obvious that she would not be going home. Erin wrote on her sister's iPad "I'm done."

We brought her children in to see her. Erin was that strong, loving mom right to the end. She wrote "I will always be with you" "You can always talk to me" "It's okay." She signed "I love you." When I asked her if she was ready she nodded her head. The nurse began to sedate her. The ventilator settings were slowly lowered until she was not being supported in her breathing. She rested peacefully all afternoon. When her brother arrived from the airport she opened her eyes, looked at him and signed "I love you." Her last words. I held her hand as she took her last breath near midnight.

My heart is broken, battered, and filled with love for her and all of those who continue to support us. I wonder if I will be able to adequately help her children to deal with this. I can't imagine my life with out her yet I am forced to imagine it.

So I have survived my own cancer, but how do I survive hers?

Here we are back at the U. We called 911 two days ago when Erin coughed up blood and could not catch her breath. When EMS arrived her oxygenation level was at 45%. In the emergency room Erin was asked if she wanted to be put on a ventilator if necessary. It became necessary and in the hope that whatever was going on could be resolved she consented to the ventilator. She was transferred to the critical care unit. She has probable bleeding in her right lung, possible infection and the sarcoma has metastasized to her abdomen. Yesterday we had a very difficult conversation with one of the doctors, making some difficult decisions. End of life decisions. Decisions that you never want to see your child have to make. Erin has been so incredibly resilient through her diagnosiAs and treatments. She is worn out, and the end is near. Her goal now is to be able to go home with hospice care. She does not want her four year old to remember her with tubes running everywhere. If she cannot get off the ventilator she will not be able to go home. She let us know that if that is the case she wants the doctors to keep her comfortable and let nature take it's course.Cancer  changed me in so many ways. I find myself talking to people in a different way than I did in my pre-cancerous life. I smile at strangers. I listen more carefully. I notice things more acutely. I have let go of things that distract me from what is most important to me. I have narrowed my focus. I set three goals for myself - to finish restoring my house, finish my novel, and become a better knitter. All attainable, I think. I am going on with my life cancer free, and am going to assume that it will not return. But, my daughter does not have that luxury.
So I have survived my own cancer, but how do I survive hers?
My heart is broken, battered, and filled with love for her and all of those who continue to support us. I wonder if I will be able to adequately help her children to deal with this. I can't imagine my life with out her yet I am forced to imagine it.

I Get By With a Little Help From My Friends

They cooked, they cleaned, they cared for children and drove them to and from school. They sent cards and called and hugged us through the worst winter of our lives. I can't say enough about the healing power of friendship when you are teetering on the edge of the abyss. Nothing says love like someone coming and cleaning your toilet.

Before I began treatment a group of women who I went to school with took me to dinner at a local restaurant. I arrived to find the table decorated for a pink princess party. We had crowns and cake pops with pink ribbons on them. Most of these gals had not been close friends in school, but we had reconnected by planning our class reunions over the last few years, and they showed up for me when I needed a boost.

Another dear friend met me for a retreat in the dead of winter and helped me to sort through some doubts that I had about how to proceed with treatment. Friends came and cleaned my house, brought casseroles and soup and cakes. I have a stack of cards six inches high that arrived in the mail on an almost daily basis, cheerful reminders of the love that I am so blessed to have in my life. Friends called to check on me just when I needed a lifeline the most and took me to lunch when I could drag myself out of the house. Complete strangers showed up at our door with gift cards and coupons because they heard about our plight through the amazing power of the internet. Through the months of chemotherapy, the hospitalizations and radiation treatments, we were continually lifted up by the kindness of others.

I learned that people truly want to help out in a crisis. When someone says "What can I do?" they usually really mean it, and are happy to have you give them a task. I learned to say "Yes, I do need help." I learned that it is a gift to others to allow them to make any small difference in a horrible situation.

One morning I was leaving the house and looked around at my family. My husband had hurt his back and he and my dad were both hobbling around with a cane. My daughter was on the couch recovering from her latest round of chemotherapy, and I was preparing for my next treatment. As I drove to town I was feeling sorry that my grandchildren were growing up in a damned nursing home. Then I went to a meeting and listened to someone talking about the chaos of growing up with alcoholism, and I realized how blessed my grandchildren are to be growing up in a home where ketchup bottles and cruelty are not flying across the dinner table. They live in a home where we are taking care of one another in the midst of our suffering. And most importantly they are experiencing the wonderful gift of community. They have witnessed the love and caring from others that many children do not have the opportunity to see.

We had a party this last weekend to try to thank all of those who have done so much for us. I was humbled by the shear number of people on the guest list. Only a fraction of the folks on that list were able to attend. I wonder every day what I have done to deserve such an outpouring of love from so many, and how I can ever repay them. I hope like hell that none of them ever need the kind of help that we have, but you can bet if they do I will be there cleaning their toilets.

Survivor

My beautiful daughter Erin
Cancer Fighter Extraordinaire

My daughter and I attended Relay for life yesterday, an American Cancer Society event. A friend and her team were walking in memory of her husband who recently died from lymphoma. "Team Robert - Crashing for a Cure" was the name of their team. They had a race car theme with checkered flags, a pit stop area, bounce house and games for the kids. A "survivor lap" begins the relay. Cancer survivors lead the first lap around the track. As my daughter and I started walking, with my granddaughter between us holding our hands and my grandson walking along with us, I started to cry. I cried the whole way around that track. Not just a few tears silently running down my cheeks, either. I was practically sobbing. I thought about those who have not survived, and those who may not survive the bastard disease. And I thought about what it means to be a survivor.

There I was with one last radiation treatment to go before finishing my long ordeal. I have allowed myself to be carved up, poisoned and burned with the hope that I will live cancer free. I will now begin treatment for five years with a hormone suppressant drug that may cause more unpleasant side effects. I am assuming that I don't have cancer anymore, that the surgeries and chemotherapy and radiation have eliminated every last cancer cell in my body. There is no way to be sure, though. There is no scan or blood test to be taken, only the daily awareness of any changes or symptoms that might indicate that it has returned.

I have lost many loved ones to cancer. My daughter has cancer and will have for the rest of her life. I had cancer, and hopefully now I don't. My daughter does not like it when someone makes a statement such as "she lost her battle with cancer." Like that person wasn't smart enough or didn't fight hard enough or just plain gave up. I agree. Most of us do everything that we can to stay alive. We cross the street when the signal says "walk." We eat our vegetables. We take our medicine. Sooner or later no more can be done and death will take us all one way or another. So what exactly does it mean to be a cancer survivor?

I guess it is different for everyone. For me, just at the beginning of my survivorship, it means never taking one minute for granted. It means caring for my physical and emotional health in a whole new way. It means loving my family and friends more deeply. Cancer has changed me. I have no patience for petty bullshit. I have narrowed my focus from the multitude of things that I used to pursue. My priorities have changed.

Surviving means more than just being alive, more than taking whatever the medical professionals recommend even when you are nearly dead from the treatments. It means being true to yourself and living fully til the very last minute.

I am a survivor.

Radiation Treatments

I began radiation therapy several weeks ago. Before starting radiation I was tattooed and fitted for a form that I lie in for each treatment. The tattoos are very small black dots, and are used to line me up properly before I am zapped with cancer causing radiation to cure my cancer. My daughter calls them my prison tats. Very appropriate since I feel like I am a prisoner to this ordeal. I was told that I would receive a total of 30 or 32 treatments. The doctor took his sweet time deciding on the actual number. The radiology tech said the doc likes to think about it. I hoped it did not depend on his mood on a given day. Like if he has a fight with his wife he might give me some extra radiation as a sideways kind of passive aggressive behavior. He finally decided on thirty treatments; twenty-five regular doses and then five "boosts" to the spots where the tumors were.

I arrive at the cancer center each morning, five days a week, for an 8:45 appointment. I undress from the waist up and put on a lovely hospital gown. Who designs those things, anyway? The ties make no sense at all, and these gowns are big enough for two or three of me. Evidently the powers-that-be want to be sure that I am not tempted to steal the things to wear as a fashion statement when I am out and about shopping or having a cup of tea with a friend. I am quickly called into the radiation room where I lay on a table with my head and arms in the mold that was made for me. My arms are above my head and the lovely gown is pulled down to expose my chest. Two or three techs position me correctly as we comment on the weather and the state of the world. The table and the radiation machine, technically called a linear accelerator, move up, down and around. There are lots of clicks and humming, and random lights going on and off. The whole process takes about fifteen minutes. I lay there studying the ceiling, which is decorated with a mural of some sort of flowering tree. Do they think that I will forget what I am going through and come to believe that I am actually laying under this tree gazing up at the sky? Someone has put some cutesy stickers on the machine in another attempt to distract me from the reality of the situation. I especially like the pink one that says "Fight Like a Girl." Anyway, I lay there trying to meditate and imagine the beams of cancer causing radiation attacking any residual cancer cells in my chest and lymph nodes. Every six days the gals do some x-rays along with the treatments. The x-rays help them make sure that everything is lining up properly. Before I know it we are finished and I return to the dressing room where I apply a steroid cream to my entire chest, throw the gown into a hamper and put my own clothes back on. I also have a large tube of aloe gel that I apply every night before bed. The cream and gel are to ease the burning of my skin that is caused by the treatment. This seemed to be working pretty well until last week. Now I have severe radiation burns, especially in the lymph node areas.

Radiation makes me tired. They tell me that the fatigue is a result of my body trying to heal the burns. It is nothing like the fatigue from chemotherapy, but I do take a nap every day, and I can't do a whole lot without sitting down to rest. I have six more treatments to go. I am so ready for this process to be over. I want my life back.

Oh, wait. This is my life.

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.