Chapter 7 Posted May 2, 2008

The article in the Star News came out on Easter. I had no idea that this is what they (Vaughn Hagerty and Matt Born) were envisioning for my story. Wow! I have to admit, this is so much nicer than having Chuck Riesz criticizing me in that interesting way in which he operated, ironically, for things we agreed on. I have received some very beautiful and uplifting emails. Although a couple letters punched me in the gut with the reality of this terrible disease, most were upbeat. Matt did a fantastic job with the photos and the head shot came out great (it’s difficult when you don’t have much to work with). Yet it is still somewhat difficult for me to see myself the way I am right now: almost 54, no hair, no eyebrows, no eyelashes, looking quite tired and worn. (The bald thing would be great if you could really do up your eyes. And, no, I am not going to wear false eyelashes. I save those for Halloween.)

This morning another CT scan. Had to put down a couple glasses of that barium drink on Sunday night, Happy Easter, and another couple glasses Monday morning. Then over to the Medical Mall for my scan, which involves an iv and later in the day over to Zimmer for more blood work. Getting stuck with a needle twice in one day. Ain’t I a lucky lady. (It turned out it was 4 times in one day. My vein is scarring up and it’s getting to be quite a challenge to draw blood. We had to use the port today which wasn’t as bad as I was anticipating. When you get the right nurse, it’s a breeze. Well not quite a breeze.) This has been a tough day for me mentally. I’m tired, cold, my body hurts, and my nose is really runny. (it’s been running since November, but some days I can tolerate it more than others.) This is one of those days when you feel like your whole life revolves around the cancer. It sucks. I have more labs later in the week and my treatment on Thursday. I tried to negotiate the Thursday lab work. We’ll wait and see.

Today is the first day of the new phase of the clinical trial. I will either be receiving Avastin or a placebo. Couldn’t negotiate the Thursday labs. Had those at 8:30am and I was in the chemo room all ready to go when my research RN came in to tell me “No go” on the treatment. Some of my blood work is still not at the levels necessary for the treatment. Well, rejected again. So much for last week’s transfusion. It’s tough being rejected because you get yourself mentally and emotionally prepared for the treatment and now I have to have a redo in a few days. I’m going to NY next week and was hoping to be through whatever side effects I may experience before I leave town. The treatment is rescheduled for next Tuesday, the infusion contraption is pulled from my port, and I am off to a late breakfast.

My friend Jodi, from Asheville, was here for a brief visit on Sunday. She was driving back from Florida and took that awful trip from Lumberton to spend a couple of hours with me. She brought a new friend, Alicia, with her. She’s from Florida via Uruguay and Jodi convinced her she needed a break from her family, so she drove up with Jodi. Not only did Jodi make one of her gourmet vegetarian dinners for us, she brewed up a special herbal tonic, and made several day’s worth of juice. That woman has some fine energy and the connection among the three of us was incredible After dinner Jodi did a tuning fork vibration therapy session on me. (She did this when I was in the hospital after my surgery and it really opened up my system.) This type of therapy helps to bring balance, reduce stress and provide pain reduction. My apartment was a healing haven that evening. Just as quickly as she arrived she was gone again. My little nomadic friend. Namaste Jodi.

Time for that first stand alone treatment. Will she be denied again? No, her blood came in just under the wire. My 30 minute treatment turned into several hours. Couldn’t seem to get the pharmacist in a groove with us so I waited quite a while. I’m fairly certain this was in my concoction during my chemo, so the side effects shouldn’t be too dramatic. I’m on an airplane in 48 hours so I’m keeping my fingers crossed.

Made an appointment with a nutritionist in Syracuse, Susan Brown, Phd. I discovered Dr. Brown while doing research on the benefits of maintaining your body in an alkalized state. Her main thrust is osteoporosis research. (We started referring to our Mom as the incredible shrinking woman when she was in her 60‘s. She was 5‘9“ in her forties and close to 5‘1“ when she died this past year at 91, so yes, it’s in the genes.) A statistic that I also discovered that I found interesting is that the United States consumes more dairy products than any other country in the world and we also have the highest rates of osteoporosis. Obviously there is a piece or pieces missing from this puzzle. Anyway, seeing as my current ph is 5, I am borderline osteoporosis in my lower back and hips, and the chemo is whacking out my blood and minerals, I thought a consultation was in order.

My weekend in the ‘Cuse was wonderful. So many caring people. People who care enough for my sister Amy (and her friend Diane) that they made this a very successful event. My college roommates, Annie, Marg and Peggy, were there and it was incredible to see them after so many years. We had such a good time reminiscing about events that happened over 30 years ago. Although, as expected, none of us remember the same things about the same event. Dave and JoBeth, who were my next door neighbors when Chris was just a toddler, came. (The kind of neighbors who would call at 2am on Christmas morning to see whether I needed any help putting together the tricycle that I had been struggling with for several hours. Tricycles are red so that the blood you shed putting one together isn’t quite as apparent.) And of course, Rox, Joyce and Gerry, my “posse” during our corporate years when we were single, partying, awakening women. None of these friends will ever know just how much they mean to me. A thought also occurred to me on my trip home: it was so nice to be able to see everyone together now rather than gathering after I’m gone.

I just want to thank the City of Wilmington for the parade and fireworks display this past Saturday. I don’t have any idea how they found out it was my birthday, but they put on quite the celebration! Birthdays should be celebrated for at least a week or for however long you can milk it. This year’s birthday took on a whole new meaning for me so thanks to all my friends for helping me milk it!

My friend Carol sent an email today about my article. She made a brief commentary about a letter that was sent to the Star News from a woman with breast cancer. Carol pointed out the differences in our emotional and mental approaches to this disease. I had not seen the letter, so I went online to find it. Whoa. Quite a response to my article. I don’t know when she was diagnosed, but I’m still flabbergasted by her tone. Ms. Ervin did not even come close to understanding what my article was all about. My article was not really about cancer, it was about practicing life. It was about getting your ego out of the way so you can get a clearer view of things. Once you have a clearer view of things you really appreciate the small stuff. I am so blessed to understand and practice present moment awareness. I am so blessed to realize that looking into the past or the future is a futile effort. I am so blessed that my relationships with virtually everyone I know have been altered in an incredible life affirming way. I am so blessed that I don’t have to be upbeat for my friends and family; they know when I’m not feeling so well but when I am I usually find celebration in all the small things we share. I am so blessed to be able to be pretty patient with all the changes this disease as brought to my life, especially since I have never been a patient woman. I am surrounded by so much love, and the blessing is that I know it. I don’t hang on any hopefulness about my recovery nor am I being optimistic. It’s very sad that at this point in her life she is dealing with anger, grief, and anxiety. Life is too short for all of that, even for a healthy person. We are all ‘terminal’ we just don’t know what day it will be. If we all really embraced that fact, we wouldn’t spend more than a fleeting moment on all those wasted emotions.

I agree with Ms. Ervin that cancer is not ennobling, but the manner in which you handle suffering can ennoble you. Cancer is not peaceful; you experience peace in your life through awareness, gratitude, patience, and self compassion. Cancer does not give you special insight into the workings of the cosmos. You must seek to find those special insights. And when you make the effort you find them and they can provide you with incredible power. Cancer does compromise your dignity if you allow it to. But why allow it to? The cancer does not have that power on it’s own; your ego controls that.

I just turned 54 and I am still healthier, mentally, emotionally, spiritually, and physically, than most people I run into every day. The statistics and labels are only there for the benefit of the medical community. I am a number on the pharmaceutical company’s clinical trial, but I don’t subscribe to that. And all of my health care providers don’t subscribe to that. My acupuncturist, my chiropractor, my massage therapist, my nutritionist, and my yoga instructor are helping me keep my body strong, but more importantly, interacting with me on a spiritual level. I will not be labeled.

Muscles all over my body are really sore right now, have been for a few days, maybe from the Avastin, maybe from the cancer, maybe the chemo is still lingering. My face is numb as are my feet. Until these last few months I’ve never been really sick or in chronic pain. But I am right now. But right now I am also sitting at my computer with a beautiful sunset outside my window. The cats are all taking their early evening naps so things are quiet and peaceful. I am enjoying a wonderful cup of real jasmine tea. I had a nice conversation with my son today; we laughed a lot. Friends have called. I did some work on a painting. Got some of my tomato plants into their pots. Went to Lowes for material for a project I’m working on . Bought the cutest pair of Birkenstock’s (needed them badly and yes, Birkenstocks can be cute). Received a letter from a good friend in NY. Visited the Hillary headquarters. (Not nearly as busy as Obama’s.) Had a great meditation session. Didn’t have to visit Zimmer. Read a little of each of the three books I’m working on. Spent time online planning a trip to Colorado for a retreat in August with perhaps a side trip to Montana to visit my friend Jane (and hit Yellowstone; I’ve never been there.) Worked on my website. I have a board meeting tomorrow and perhaps a few hours of paid work and who knows what else that day will bring.

There are days when I am really sick or the cancer activity seems to be consuming my very precious time and quality of life seems like a distant memory never to be experienced again. But then there are those days when just every little thing is perfect, like today…

Someone sent me this in an email. I think it pretty much sums things up!