My name is Sandy. November 26, 1996 (two days before Thanksgiving) I found a lump on my right breast that seemed to appear overnight. I went to my doctor the next day and he ordered mammogram and ultrasound for the following week. I had those on December 5th and they had me come back the next day for an aspiration and biopsy (not a good sign).
Needless to say, it was a very long weekend, waiting for results! Tuesday, Dec 10 my doctor called with bad news...it was cancer. He made an appointment with a surgeon. On December 13 my daughter, Magna, and I went to surgeon armed with information and questions. However, all of our questions were blown out of water when he told us about the insidious type of cancer I had. There was no mention of Inflammatory Breast Cancer in any of our information! Also, I had no affected skin on the breast until two days before seeing my surgeon. I really caught this early!
December 16 I met with my oncologist and we discussed the protocol...my head was spinning. I started FAC chemotherapy Dec 20th and I had 6 treatments. I responded so well to the chemo that the tumor, the rash and the lump under the arm (yes, by the time I went to the oncologist there was one there) were gone by the 4th treatment.
During this time I was dealing with the nausea and fatigue. I was lucky and had no mouth sores and my counts were always ok (my fourth chemo was postponed for one week). Although some women prefer having one, I didn't need a catheter put in; the nurses were always able to get a vein even though they are not very good. It wasn't the best time of my life, but I made it through. Even though I have terrific family and friends, I was also lucky to find a great support group, which really helped. I wasn't ready to look for a group for about three months, but I highly recommend it. Other women who are going through similar experiences can share information and offer support that others can't.
Unlike other breast cancer patients who have surgery and then deal with the loss of their breast, I had five months to anticipate it. As the time grew nearer, I became more anxious about it, since my breasts have always been such a big part of my sexuality. Then, I happened to be watching a show on PBS about a group of breast cancer veterans who got together regularly. As the individual members were interviewed I became aware of a photo on the wall...it was a black & white of a women's torso... she was so toned and had such a wonderful body that it was a few minutes before I realized that she only had one breast! This was a break through for me and I no longer feared the loss. All I wanted to do was get the rest of my body to look half as good!
What continues to amaze me is that this terrible thing that happened to me has also turned out to be filled with some of the most enlightening and personal growth experiences of my life so far.
When I went back to schedule surgery, my doctor asked me if I would be interested in having Julie Motz, an energy healer, be with me during my MRM. I had heard of Julie and was aware of her being here in San Francisco and was going to ask him about her... I was so glad that he was open to alternative healing and that he wanted to know if it would help his patients! Anyway, I said,"yes".
My surgery was scheduled for May 14, 1997. There was a pre-surgery session with Julie on May 6, during which she prepared me for the surgery. She walked me through the steps and what she would be saying during the procedure ...yes, she would be with me in the operating room and then with me in the recovery room until I woke up. During the meeting Julie said that she had been talking with Sandy Hobson, a shaman in training, who wanted to help me through the surgery as well...I asked her to please have her call me. She called and explained that she would go into her "non ordinary reality" to help me through...I said, "Great".
Surgery...Julie arrived in the pre-op room and it was good to see her. She spoke with Magna and my Mother, and I know they were glad she was going to be there. I woke up in recovery with a stupid grin on my face, feeling tired, but fine...went home the next day and realized that I had gone into surgery with no anxiety whatsoever and thought if that was the only result of Julie's being there, it was pretty amazing!
About two weeks after this, I spoke with Sandy Hobson, the shaman. She told me that the first thing she did on the morning of my surgery was to go in and ask her guides what she needed to do for me...they said find her power animal...she did, it is a white horse. Then she went into her non-ordinary reality and the first thing she saw was the surgery room filled with a white tornado of positive energy. Then she looked down and saw that I was red with rage (literally). She said "Oh, no. We have to get rid of this rage," so a little vacuum came in and swept the red away (whimsical, huh?).
I found this all very interesting, but when I spoke with my other daughter, Michelle, she reminded me of a strange incident that happened to her before my surgery that made it amazing. She was hiking in the hills with her dog and a friend when she heard a horse on the trail. She turned and saw a white horse. She told her friend and they moved over to let the horse pass, but when they turned to look, there was no horse, just a very weird, disturbed man who gave them some verbal grief before he went away. There is no other explanation we can think of except that she saw my power animal!
June 4th...follow up with Julie. She said that as soon as the surgery started she felt me leaving...she bent over and said into my ear, "You can't go, you have to stay." Then, she said, I was filled with rage at my father. She said I felt that he did not value me... I burst into tears. Julie and I had never discussed my relationships with my family, so the fact that she could hit the nail so specifically on the head blew me away! I was aware of the problem, but I had no idea that I was still hanging on to so much anger. We did some role-playing and it was very cathartic. She told me a few more interesting things that she felt and observed and I left feeling peaceful and very much in control of my life (a feeling that had eluded me thus far).
In addition to all this, I had a hands on healer who sees your healing color...mine is bright blue green...she said at the end of the session I kept splashing up through the color as if I were coming up from a dive. I love this visual and think of it often... I also use the white horse in my meditations.
By the way...the pathology from surgery was great...no residual cancer cells in tissue, clear margins and only 1 affected lymph node out of 13.
I have had two rounds of Taxol (brutal!) in preparation for my HDC/SCR (heavy dose chemo with peripheral stem cell rescue). The stem cell collection was scheduled for August 12, with another Taxol on Aug 18. I was supposed to enter the hospital for HDC/SCR on Sept 8.
However, before that could happen, my insurance company denied the procedure. I was devastated! I felt all the wind go out of my sails and Magna was sure that this was the last straw for me. I had a chance to appeal and had 10 minutes to plead my case to the insurance company on a conference call.
Meanwhile, when I was seeking information to help with my plea, I contacted the State Controller's, office for help. I was aware that Kathleen Connell had sponsored a bill to help people who had been denied treatment by their insurance carrier. They asked if I would mind speaking with the news media and I said I would be happy to. KRON TV was doing a story on the fact that the Governor was going to veto this bill so they contacted me. As a result, a TV crew was in my living room taping my plea for television.
When the insurance company upheld their denial, I realized that they didn't care what I had to say, and they just listened because they had to by law. Then, I got angry! I spent the next four months fighting them for my ABMT. I got an attorney who was a patient advocate; I printed up flyers asking people to call and e-mail my insurance company and my daughter and I passed out about 400 at the Race For The Cure, as well as my parents passing them around at their clubs and organizations; I spoke at the rally in Sacramento for the bill, and was on local TV again. Finally, between my attorney and countless people contacting the insurance company, I WON!!!
In the meantime I received 28 days of radiation treatments and did some guided imagery that was wonderful and very personally enlightening. The preparations for my ABMT were rescheduled and started in January, 1998.
I had my transplant in February and it went pretty much as expected, dealing with the three P's I peed, I puked, and I pooped. I was in the hospital for three weeks and then home. Thank goodness my Mother came because I could not have done anything for myself that first week. My energy came back quickly, however, and I was soon fixing my own meals. I ate "white" food for weeks (mainly mashed potatoes). While I was in the hospital, my two daughters, Magna and Michelle, and my sister Karen performed a real labor of love. They totally cleaned and painted my apartment and talked the landlord into replacing the 30-year old carpeting! It was very important that my environment be as germ free as possible until my immune system came back. I can't tell you how I cried when I came back to my "new" home.
As I regained my strength, I began working on a conference for Breast Cancer and Integrative Medicine. Integrative Medicine combines traditional Western medicine (chemotherapy, radiation surgery) with alternative therapies such as herbs, acupuncture, and meditation to name a few. I was Publicity Chair and managed to get published in a few newspapers. I also got some good Television coverage. As well as being educational, this was an extremely fulfilling experience. The conference, held in October, was an amazing success considering we were all volunteers of breast cancer survivors and advocates and many of us had never tackled anything of this kind before!
I started working part time in October while it is good to be getting back to normal (whatever that is), working sure interferes with one's social life! My doctor's checkups have been good and other that minor post treatment aches and pains, I am NED that is No Evidence of Disease or, as I prefer "No Expiration Date"!
As I said before, I have been sooooooo lucky through this whole mess and my luck includes the support of all of you out there who know exactly what this is all about!
Good luck and God bless us all.
June 7, 1999