It is hard to navigate the waters of medical care. I am fortunate that my dear friend Sheena comes to most of my appointments with me. She keeps a running list of things I need to do including getting referrals and calling about follow up appointments. I am on chemo and I often feel challenged by these “normal” things. It is very humbling to feel cognitively challenged. I often feel like I am having senior moments at the tender age of 37.
It occurred to me today while Heidi and I were at Circle Thrift that given my life expectancy I am in fact a senior citizen and these are my golden years. More likely than not, this is my retirement. I see as many doctors as an older person. Surely, I complain about my health as much. I do not work. I do not really drive anymore. I need other people to help me do the things I used to do myself. Spicy foods upset my stomach. I am often in bed by 10pm but I do not usually sleep through the night. I find myself awake at 5am wondering if I will be able to fall back to sleep. I guess if I think of this as a contemplative and reflective time of life it would be to my advantage. Maybe that is what this time is for. I am still stuck in an overwhelming sea of doctor visits, pharmacy errands, and specialist referrals. I have not had much time to meditate or emotionally adjust to the new phase of my treatment.
And the new phase right now is my upcoming surgery. Which I think I understand but the reality of it is another matter. I will not be able to hold my baby for an extended period…weeks? I will have four drain bags coming from my chest. A chest no breasts. That is a loss that I had been eager to happen at the outset but now I find myself hesitant to give them away. I breastfed all 6 of my children. I nursed them and cuddled them. Now this important physical reminder of their infancy and babyhood will be gone. And there is pure and simple sexuality. I have had breasts since I was 13..14. How do I feel about not having them? I know models don’t have any and everyone finds them sexy. But models also weigh 100lbs. I have spent a lot of time dressing to accentuate my positives. And now… I don’t know how to be me without my breasts. I know that I will figure it out. I hope that Kelly can look past it and still be attracted to me.
And beyond surgery everything is actually more unknown. I was under the impression that I would definitely get radiation. But the doctor we met with said they will take the most aggressive approach possible. But that may not mean radiation. I cried during the visit because I have never heard of someone not getting radiation. Dr. Solin assured me that he works extensively with IBC patients and is very familiar with all the work done at the IBC clinic at MD Anderson. But in the end until he sees my post surgical pathology we do not know if I will need/benefit from radiation.
So where does that leave us? Somewhat in limbo. I may in fact need to do an additional course of chemo following surgery. I may do radiation. It is hard to say. And if these treatments fail to work…I may try to get the money together to move to Santa Monica and get Rexin G. It is all a big IF. And that is a challenge as well. It is hard to live to move forward without a plan. Without knowing how to best proceed. I have entrusted many doctors with my care. But they do not know what the future holds anymore than I do. So I am literally forced by these factors to live totally in today. Because I really know very little about tomorrow. I am living out my golden years with no golf course and no cruise wear. Just lots of doctors appointments and forgetfulness.
I think you should go to Delicious and have Amy put you in the most gorgeous corset they have and have your picture taken before your surgery. Get the “girls” one last gorgeous photo!! Maybe it could be used as advertising for Corsets for a Cure. I know you know you are more than your breasts, but you have had them for over half your life and you will need to mourn their passing. I hope and pray you find some peace & comfort before your surgery and certainly afterward. I believe mental attitude is as important as anything medical you will undergo. You are constantly on my mind and in the prayers of so many people. I read some quotes about strength and I thought of you–“You gain strength,courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do” Eleanor Roosevelt. You are strong and an inspiration to so many people. God bless you.
When things get really scary I think we’d all like our doctors to be a little less human and a bit more Superhero! Andrea, I have to ask, how is it that your faith seems to remain strong even on days when your mind and your body are not? I am fascinated by that. The faithful seem to be the strongest people out there when it comes to illness, death, and loss. I’ve never even met you and when I think of you and your husband and children I am angry at God. I get that we all have to be tested and suffer. I get that we have free will. I want you to get well. And I pray because as mad as I am at how senseless things can be, I don’t know how else to help you get better.
I had a dream last night that we were together and I was playing with Clay (and attacking his cute belly). What a happy dream.
In my spirirt I am there with you.
Dear Andrea,
I know how it feels to be in an overwhelming sea of doctors, pharmacy errands, and specialist referals. I was diagnosed as a Stage 3B breast cancer patient in 2001, had one breast removed, and endured eight cycles of chemo therapy and radiation for seven weeks. I found these treatments very difficult to endure.
When my cancer returned in October of 2006, I pursued other treatment options. In the course of my husband’s and daughter’s legal work for Doctors Fred Hall and Maria Gordon and their company, Epeius Biotechnologies, I became acquainted with a different treatment for cancer. This treatment is, of course, Rexin-G. There was no clinical trial at that time for patients with metastatic breast cancer. However, treatment was available in the Philippines with Rexin-G manufactured in the United States. To make a long story short, I went to the Philippines with 3 tumors and returned after three weeks of treatment with one subcutaneous node less than one centimeter in size which I had removed surgically.
I found the treatment with Rexin-G to be painless with absolutely no side effects. My oncologist in Champaign, IL, where I live encouraged me to try the gene therapy treatment with the idea that I could always return and receive chemicals (Yuck!).
While I am 75 years of age, I feel that I am in good health and vigorous. A few weeks ago I hiked with my husband and grandchildren in the Rocky Mountains.
It now appears that the surgeon may not have removed all of the cancerous nodule, so I have enrolled in the Rexin-G breast cancer clinical trial in Santa Monica and perhaps shall see you there.
In the course of three years of work, my husband, daughter, and I found that not only was the vecotr, Rexin-G, a wonderful drug, but that Dr. Gordon and Dr. Hall were warm, compassionate people with great integrity. Dr. Chawla, who is the principal investigator of the clinical trial, is recommended very highly by Dr. Hall and Dr. Gordon.
In August of this year I gave a presentation at a fund raiser for the Lazarex Foundation that seeks to raise money for patients who cannot afford treatments. I am sure that if you enroll in the clinical trial and need financial help, that every effort will be made to make it possible for you to receive it.
Please let me know if you have questions or concerns.
Best wishes and good luck,
Joan