Cancer Chronicles 5

The MRI revealed no more then we already knew. As I continued with the testing and the process, Mick was continually with me and I let him do the talking and ask the questions. I determined then that like everything else in my life, I needed a Project Manager. He agreed to take on the job and I became just the patient who was more interesting in running my life and my business instead of worrying about doing the research and making notes about what pills to take when, etc.

When I went for the PET scan, the lab tech gave me a whole run down about the procedure and kept asking if I had any questions while the radioactive dye was dripping into my system. He seemed so disappointed that I didn’t ask questions. I finally put my book down, looked him in the eye, and said, “Oh, yes, my husband wants to know if I will light up tonight.” The poor tech ran across the room to assure me that  I would be fine. I guess he lacked a sense of humor.

The next step was to find a surgeon. Even though the chemo would take months, I first needed a surgeon to put a port in my body to accept the chemo. Of course, someone told me not to get a port that I would be open for infection. And someone else told me not getting a port caused permanent nerve damage to her arm from all the infusions.

“Speak to my Project Manager” became my mantra. If there was one thing I was learning, was that everyone’s breast cancer was not the same and that doctors had different approaches. My job was not to worry and get well. 

The appointment with the next doctor was like visiting the land of the ghouls. When I made the appointment and stated that I wanted a lumpectomy, I was asked are you sure you want a lumpectomy and not a mastectomy?

The doctor’s assistant took a history. Her eyes lit up when I answered in the affirmative to being an Ashkenazi Jew. She treated us like two babes in the wood being led to slaughter. She left us alone for two minutes, the only time we were alone in this visit that took well over an hour.

The doctor then came in and suggested I get two mastectomies and have my ovaries and uterus removed. As she was rambling on about the chances of my being positive for BRCA 1, a hereditary breast and ovarian cancer syndrome (HBOC), caused by a mutation. Those that have this mutation are at a much higher risk for breast cancer, ovarian cancer, prostate cancer and pancreatic cancer.)

Then there was a quiet knock on the door and the genetic counselor entered the room. “Who do we have here?” She explained about BRAC 1 and BRAC 2 and wanted me to test for both. The BRAC 2 is much rarer and the percentage of people having it is minimal. I agreed to be tested for the BRAC 1. When she pushed and told me that I should do it for my children, I snapped that it wouldn’t be necessary. (If she had read my history she would have seen that my children are adopted.)

She encouraged questions and kept saying “Oh, what a good question. Do you have any more questions?”

I couldn’t wait to get out of there and felt like I needed to go home and immediately take a shower.

Needless to say, this was NOT the doctor I was planning on using.

The next doctor was all lightness and cheerful. She winked and smiled and put us at ease. I was told I needed a port for the chemo so we decided to engage her for the port.

I went to the hospital and the first doctor I saw that morning was the anesthesiologist. I explained once again that I needed very light anesthesia or they would be keeping me overnight. He was pleasant and agreeable and in general I was pleased with the staff at that hospital.

After they put the port in, they put me in a holding room. I was anxious to leave but my entreaties were answered with I couldn’t go until a dressing room was freed up. As I was in a curtained enclosure, I suggested that they bring me my clothing and let me dress there.

The answer was a firm “no.”

After an hour they let me leave.

Mick told me that the doctor had come out and assured him that she had looked at the x-rays and that everything was fine. They insisted that I be wheeled to the curb and that Mick bring the car to the door.

When Mick returned with the car, I got in and suggested he drive about 30 feet, then I quickly changed places with him and drove off to our next appointment…one that for a change did not concern my cancer.

An hour later I got a call from a nurse that sounded panicked. “You must come back for an x-ray immediately.” “Why,” I asked. “I was told one was taken.” She put me on hold and again said I must come back ASAP for an x-ray. I told her that I had an appointment the next morning for another test and that I would have it done then. Five minutes later I received another call from another nurse telling me I must come back. I told her the same thing. She relented and said that all I had to do was go to the desk, and they would send me back immediately for an x-ray.

Not so. We had to give a million explanations before I was ushered back for the x-ray.

The list of doctors that I would not trust was getting longer by the day.

to be continued

Cancer Chronicles 4

They gave us the results of the biopsy immediately. I don’t remember when I called my primary physician but she had recommended a doctor right across the hallway from where I had the biopsy.

We asked for copies of the reports and went to make an appointment. We were told that the doctor I wanted to see was no longer taking new patients but that her partner was. We were disappointed but took an appointment with her partner.

A few days later at the appointment, the doctor’s office told us that my insurance would not cover surgery by this doctor as she only operated out of the Jewish Hospital, and my insurance did not cover that hospital. I wanted to see her anyway. My experience has taught me to get at least two opinions before going under the knife.

The doctor also explained that she could not be my surgeon but we insisted that we wanted an evaluation. It was a good decision.

This physician blew us away with her professionalism.

She explained that she was a breast surgeon with a fellowship and that most surgeons were general surgeons and did not have a fellowship.

A thick three leaf binder appeared on her desk and she went through it page by page explaining the different types of breast cancer and circling the information that applied to tme. She answered every question without being patronizing.

Her nurse had taken my medical history and she told me that as an Ashkenazi Jew I should have genetic testing to determine whether or not I was positive for BRCA1. She also outlined what was in her opinion, the best course of treatment.

Dr. Hillary Shapiro Wright also set me at ease right away by explaining that I was in the second stage of cancer (early) and that my chances for a full recovery were 98%

IF I was positive for BRCA1 then she would advise me to have my ovaries and uterus removed.

Without the test results, she recommended that I first have chemo therapy. Usually chemo shrinks the lump and there is less to remove when it is time for surgery. Mick and I were less concerned about the breast lump and more worried about the lymph node involvement, which appeared to be minimal.

After the chemo she recommended surgery and then radiation.

Dr. Wright gave us recommendations for doctors for chemo and radiation and made appointments for some of the preliminary tests that she thought I should have.

Immediately after that appointment we made an appointment with a general surgeon who had years and years of experience doing breast surgery. 

to be continued

Cancer Chronicles 3

I went home and decided to take a few days to think about this news  before telling anyone. During that time I had lots of conversations with myself and my Maker.

I asked myself, “Should I be angry with G-d?”

The answer, “No way.” G-d has given me so many blessings.

When I couldn’t have children he found a way to give me two precious newborns, four and a half months apart. I was raised to believe that having children were a burden and a responsibility but when I held that first baby, my son, David, I wanted three more. No one ever told me the joy it would be to have a child.

Then came my beautiful daughter, Sarah.

I was blessed with many husbands, most of them not the right ones for me, but each one moved me forward in my life’s journey. The first one taught me not to marry a Muslim (although he was a very good guy) but that I needed to understand who I was as a Jew and to marry someone who would take that journey with me.

It took the fifth try to find the right man, but G-d blessed me with that also.

My childhood was tough, but it taught me to be both hard on myself, to demand much from myself and to be strong. It also taught me not to be so hard on others. Those lessons served me well so even that was a blessing.

Health? Other than a hip replacement surgery four years ago, I have been in fabulous health. At 72 when I walk into the doctor and they ask what medicine I take, I give them my list of vitamins their jaws drop.

I am blessed with four grandchildren, each one special in a different way, and each one loveable and beloved.

My blessings include tremendous energy and drive, gifts of writing and painting, the joy of helping others, and a close connection to G-d that allows me to appreciate all that I have.

At that moment I decided that whatever is planned for me, I have no quarrel and I am ready and willing to accept whatever that is.

Also, I firmly believe that G-d sends us tests and if we don’t pass them, or don’t even try, we get all our blessings in this life and have very little suffering, but no life to come. So I consider this cancer a test. G-d is telling me I am still in the running for an afterlife. Thank you. G-d.

A few days later I called my sister. She would be the first one I would share this news with. It was a mistake because I did not know what stage my cancer was and my sister was scared. Since I had not had a mammogram in three years, it could easily have been late stages. My sister went through breast cancer and survived. My mother went through breast cancer and survived, but two years ago we lost our only other sibling, the youngest, my brother Allen, to Mesothelimoa. I am the eldest and my sister couldn’t bear the thought of losing her last sibling. I remember dropping her off at the airport after my brother’s funeral. I was driving back to Cincinnati after a two month stay with Allen, and my sister was flying back to Texas after a three month stay with Allen. She said, it is only us now. I, trying to lighten the mood, said, “Yes, and we are orphans too.”

The day before I was scheduled to have the biopsy I told my husband. He lives in Israel and was here for a six week visit. I was to go to Israel for two months about six weeks after his departure. In my marriage, although I know my husband loves me with all his heart, I always felt I came in second to his love for Israel.

He said,” I’m with you babe. I’m staying with you throughout all the treatments.”

The next day I went for the biopsy.

Cancer Chronicles 2

Being radiated is not my favorite pastime. They took some more shots and this time they asked me to wait. The images were read by the radiologist and then they asked me to speak to him directly. He explained what he saw on the x-rays. He felt strongly that it was cancer cells and I was told to make an appointment to have a biopsy which I did. The doctor called me “young lady” and then the nurse, when she escorted me back through the maze of rooms to the dressing rooms (or undressing rooms) and she also called me “young lady”. There is very little in life that sets my teeth on edge but this is one of those phrases that do. It is like saying ‘You are a silly old lady who is so vain, that if I call you ‘young lady’ you will dissolve into a giggly euphoria.” At the age of 72 I have accomplished a lot in my life, so it is also like dismissing all of that in those two cutting words. I looked her in the eye and said I find those words to be condescending and supercilious. I noticed the doctor used the words also. Please never again address me as a ‘young lady’”. She was very apologetic and I certainly hope that she does not plan to insult any other mature women with that trivializing phrase.

At the biopsy, in addition to taking some tissue from my lymph nodes and breast, they put in markers around the lump. I don’t know if I naturally have a high tolerance for pain or if I have trained myself to refocus and ignore pain, but it bothers me much less than others. The doctor and nurses were amazed. While they were busy doing what they had to do, I amused them with some stories about Israel.

They said they would notify me with the results. For some reason known only to them, they could not reach me.

In Cincinnati, my main volunteer work is doing taharias (it is the process of getting a body ready for burial in accordance with Jewish laws and customs). For more information on taharias and all other Jewish laws, traditions and customs associated with death, please see e-shiva.com

For the past five years I was ordered to get a colonoscopy. I usually took the authorizing slip and stuffed it in the bottom of my purse. This year I decided I would actually go through with it. I went to the drugstore to get something to empty my bowels (at the cost of over $80!) and took it. I was then picked up to do a taharia. I thought it would be hours before the meds would go to work. I told the driver. She said, “I don’t want you to poop in my car. I think we should get a replacement for you.” The taharia team consists of four people (women for women and men for men) and we were picking up the third and parked in front of her house. When the third entered the car, the discussion continued as to whether I should opt out and my phone rang. I stepped out of the car to take the call. It was my doctor. “I am sorry to inform you that you have cancer.”

I stuck my head in through the car window and told them I would go home. With my dark sense of humor I thought this was absurd. What comedy team could have had better timing? Then, as I raced home for the evacuation I was told would happen by the driver for the taharia,  I asked myself, is my life being flushed down the toilet?.

To be continued

 

Cancer Chronicles

When I discovered I had breast cancer, I saw no reason to discuss it with anybody except my close family. My plan was to go through all the necessary medical procedures but other than that, I wanted to lead a normal life. However, the out pouring of concern and curiosity about the process by those that care about me and how I am enduring the process, has prompted me to write about the experience. Hopefully it will help others. Of course, one can go online and find beaucoup information on cancer and cancer treatments, but these entries will be more on how my trust in G-d, and my self- taught optimism keeps my spirits high and keeps me worry free.

I am not a model patient. If I am told to get a mammogram once a year, I wait two or three. Plus I do not have much faith in the medical system as I have been misdiagnosed many times. Years ago, a day before I was to have a hysterectomy I decided to get a second opinion. Didn’t need it; only some antibiotics. On another occasion when I was sure I had skin cancer I was told “no”, and I had to go to several doctors and insist on a scraping at which time I found out I had basal cell carcinoma on my nose.

When I do get a mammogram, they always tell me that my tissue is dense and they need more x-rays. They usually tell me to wait while they check the x-rays. This time they dismissed me. I had waited over three years to have this mammogram, much to the dismay of my physician.

A week after the mammogram I was on the road to New Jersey to visit my children and grandchildren. From there I flew to Israel (Naharyia) where my husband resides. While I was driving to NJ the X-ray Department called and instructed me to return for more x-rays. They found a troubling spot. I asked if this was the same spot they found last time. “No”, this is the right side; last time it was the left side.” I laughed and said, “Sure. I’ll be back in two months.” (Remember, I told you I am a rotten patient.) And then I forgot about it. I had a great visit with my family and an absolutely wonderful time in Israel meeting fascinating people, working on my memoir and doing the bookkeeping for my property management business. Also,  the gynecologist had performed a breast examination a month before the mammogram and I was told everything was good.

A week after my return, I remembered and made an appointment.

to be continued