Cancer Chronicles 10: I am out of cancer jail

I am out of cancer jail. Thank you HaShem.

I am out of cancer jail. Now I am free to travel. No more surgery. No more weekly and sometimes daily doctor appointments, no more being in bed for days or weeks after chemo, no more radiation five days a week.

I am out of cancer jail. Thank you HaShem

I am celebrating my freedom. I just returned from visiting my children and grandchildren in New Jersey. How great to hug and kiss my grandchildren and children. How beautiful to sit at a Shabbat table with my family and to have a visit from Miriam whom I haven’t seen in months.

I am out of cancer jail and will continue my celebration this Thursday when I depart early in the morning for Hollywood, Florida to visit my close friend Esther and her husband, Rabbi Lustig and to attend the Balk wedding.

When I return to Cincinnati there will be a flurry of activity to take care of last minute problems, setting everything in gear for my business to work without my physical presence for three months, working on all that I need to complete so that the IRS will not be looking for me on my return, and gift shopping for some special children in Israel.

I am out of cancer jail. Thank you HaShem.

*HaShem, in Hebrew, means the name. This is the manner in which Orthodox Jews address their maker in order to show respect and not misuse his name.


Cancer Chronicles 9 – Moving Forward

I was sitting on the floor of the family room teaching Mick a few yoga stretches. I felt normal. Feeling normal for me is like sighting a heron in my backyard in Cincinnati, Ohio. Mick’s clumsiness in trying to do the stretches made me laugh, something else that has been rare. Unfortunately, my normal range of emotions towards Mick have been more like grumpy, cranky and disapproving, sometimes for a reason and sometimes just because.

The phone rang. It was Miriam inviting us to come for a Friday night meal the Friday after the one coming up. “If you had called me a day earlier, the answer would have been ‘no’, but I think I can do it.”
Of course, the days ensuing gave me plenty of reason to examine my sanity. For two days in a row Mick and I had walked the Kenwood Mall after radiation and, with a minute’s rest at the beginning point, I was able to do two rounds which would be equivalent to walking from Miriam’s to home. On the other hand, for the past three months, the longest I have lasted at a Shabbat table was about 45 minutes. When my son and his family visited on Thanksgiving, after eating a little, I stretched out on the floor and my son, David, came and lay down beside me. We were soon joined by my grandchildren. All the other Friday nights, after being at the table for about 20 minutes, I would recline on the couch for 10-15 minutes, go back to the table for maybe another ten minutes, and then to bed.

Chemo kept me from sleeping. Since I have been taking radiology, I have noticed a change. I am sleeping at night and instead of walking around like a zombie during the day, I am sleepy still but not exhausted. In the evening, instead of going to bed at 4pm I am simply taking another rest and then up for a few hours in the evening.

After acupuncture, I am generally in deep pain and try to ease out of it by soaking in a hot bath, lying in bed, doing stretching exercises and asking G-d to make my pain pills effective. I was to have an acupuncture appointment that Friday. I changed it to Monday and pep talked myself throughout the coming days that I would make it to this Friday night dinner and have the strength to sit at the table for the required time.
My husband was fearful and kept telling me not to push myself. I felt badly for him spending Shabbat after Shabbat alone while I sank into the comfort of our bed and he bent over the Chumush with some back up books from the sages, as he tries to discern the mysteries of the week’s parsha, alone.

Our friends Jeff and Debbie were also guests at Miriam’s and I asked Debbie to pick me up. She showed up at 4pm and I was worried that I would be worn out before I reached the table. I coaxed her to stay and visit before we left the house. It was great to catch up with her and just schmooze.

At 4:30pm we went to Miriam’s and Mick went to shul. Debbie volunteered to pick up Miriam’s mother-in-law and married myself to the curves of the sofa.

When Barbara and her daughter Leora showed up, all attention was on the beautiful and animated Leora who was visiting from NYC. Poised to make an important decision about her teaching internship she went into great detail explaining all the pros and cons of making her decision which involved not only a lot of traveling but possibly precluding taking necessary Master’s courses. I was mostly quiet but loved the way the women were so involved and supportive of Leora’s decision making process.

Miriam’s mother-in-law, Esther, who is 86 years old and looks 20 years younger, always appears to be on the brink of receiving a pleasant surprise that will make her life even better. I silently wished that we all reach that age in that same good health, with that same wonderful disposition and that contentment mixed with excited anticipation.

The men came in from shul and we gathered at the table. And although I have been at this very same table before, and at many other similar tables, this table seemed special. I looked at the three other couples and recognized how devoted each husband is to their wife. Menchem walked the length from the head of the table twice to make sure that his wife had the first cup of wine from the Kiddush cup, and the first slice of challah, instead of passing it down the table. The conversation went from one subject to another but frequently it revolved about asking about someone’s progress or plan and how they were faring. You could feel that everyone cared about the answer to these questions. The men sang Shabbat songs and they sounded sweeter and stronger than usual. Miriam is a great cook and the food looked and tasted delicious and the dishes were abundant and varied from creamy, rich carrot soup to sweet squash kugel and bean dip to fresh salmon.
Rabbi Balk is graduating his chaplaincy class on Monday and beginning a new career, just as his youngest daughter is poised to begin hers. Jeff and Debbie, recent baal teshuva, are eager to lap up and treasure every new revelation of Torah, or customs and laws. I shared some business news, amazed that in my weakened state my life continues to be exciting and adventuresome.

Being out with others, all who live an observant Torah lifestyle, who care about their spouses, their friends, their community, felt like coming in from a storm after getting my feet drenched, and then sinking into a hot bath and a steaming room, enveloped in warmth.

I lasted until dessert and then announced I needed to go home. Barbara wrapped me in a warm, supportive, hug, as did Debbie and Miriam. Leora, with great sincerity, wished me well, and Menachem walked Mick and I out the back door to show us the short cut.

I had the right amount of energy to walk home and get into bed and I felt like this was a new beginning, a hopefully beginning, to leading the life I had before cancer. What a glorious Shabbat.

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Cancer Chronicles 8 – Twinned and Untwinned

In the beginning of my cancer treatments, Mick was my project manager. He doled out my medicines, collected copies of all my tests, asked the appropriate questions and advocated for me.

When we were home, everything was exactly as it was before I got cancer. I cooked, I waited on him.
When I was feeling really sick and could do nothing more then lay in bed, he was also laying in bed.

One Friday night, a friend cooked for us, and she is an excellent cook. When I am feeling well, everything she makes is delicious. Days before I had finished a chemo treatment and for a week after each treatment I cannot taste salt (which I thrive on) and most foods taste like metal. Only the sweet foods tasted normal to me. Whatever I did not eat, Mick didn’t eat either. One of the side dishes was an apple crunch. Of all the wonderful food my friend had prepared, that was the only dish that appealed to me. I had a little, and exhausted and weak, I left the table before the end of the meal and went to bed.

At 3am I woke up and envisioned the apple crumb dessert. I looked all over the kitchen and in the refrigerator. It was nowhere to be found. In the morning, I asked my husband where it was. He flashed me a big smile and said, “It is in my tummy.” I was beyond furious but bit my tongue.

The next week when food tasted more normal, I had a yen for salads. I think most salads are boring, but a little radicchio and arugula really give salads a kick. Mick had planted some in our garden. I went out to the garden to look for the radicchio. It was all cut to the bottom. I asked what happened to it. He explained that he had juiced it. “Why?” I asked, “Did you discover some healing qualities that would benefit you?” The answer was a resounding no. Again, I was angry. Again, I bit my tongue except that from then on, whenever there was something that tasted good to me I ordered him not to touch it.

I could not figure out why my normally considerate husband ate only the foods I like and why when I needed him the most, he was always sick.

On our next visit to the doctor, when she told me to take a deep breath, I was looking at Mick and noticed that he took a deep breath. The proverbial light bulb went off in my head. My husband so identified with me that he became the patient.

After an illuminating conversation, wherein I was the illuminator, things changed and my husband once again became the considerate and helpful husband that I had envisioned would be at my side through these trying times.

We only ran into one amusing problem after the “enlightenment.” My last chemo treatment, left me with no strength to fight off any illnesses and I developed a severe case of sinusitis and lost my voice. I needed something to drink. I banged on the nightstand. No response. I banged on the metal lamp. No response. I slammed the nightstand drawer back and forth. No response. Then I called his cell phone thinking he would see my number and come into the bedroom. His cell phone rang loudly in my ear because it was in our bedroom instead of with him. Finally, I picked up my Ipad and emailed him and SOS. Finally he came into the bedroom to see what I needed.

This has been an amazing journey. Mick and I enjoy doing many things together, but we are also very independent and spend lots of time apart (him in Israel and me in Cincinnati) so this has been an amazing journey where we have spent so much time together. I have learned to depend on him, and he has learned to be there for me. When one marries this late in life, it is impossible to know in which direction a marriage will go. Happily this one is thriving.

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Cancer Chronicles 7: (The Ten Plagues of Chemo Treatment)

Not to gross you all out, but for those who are curious about what chemo can do to your system, below are some of the symptoms that I am suffering from:

1. An intermittent cough accompanied by phlegm

2. Fungal infection of nails, both hands and feet

3. Tingling, numbness and pain on finger tips and ends of toes. At times, the pain was so sever it was difficult to walk.

4. Infections including yeast, mouth stores and eye infection and running a low grade temperature

5. Stomach problems including diarrhea, constipation, passing out while trying to move my bowels (resulting in waking up on the floor with my head on the bathtub and a black and blue eye), indigestion, stomach aches, burping from both ends

6. Eye tearing, sometimes very severe and nose dripping. I frequently wake up with my eyes glued shut.

7. Losing all my hair (I was lucky that I kept my eyebrows and eyelashes

8. All types of pains including in the hip joint that was replaced causing me to limp

9. Metallic taste in mouth causing food to taste like metal or cardboard

10. Feeling weak, dizzy and rubbery-legged. After the first chemo, I had three good days and then five days in bed. By the fourth chemo, I had three good days followed by two weeks in bed. Two more chemo treatments to go and I expect that I will be too weak to get out of bed for most of the time. Some days just getting up and taking a shower is all I can manage.

The pluses: (If you have minuses there must be pluses, right ? :))

1. Lots of offers for help from expected and unexpected places, especially people praying for me.

2. A charitable organization gives me a free house cleaning once a month for three months. They sent three ladies to do whatever I wanted in the house for two hours on each visit.

3. I don’t have to cut my hair or shave my legs

4. I have read more books in the past few months than I did the entire last year, and I love to read and I especially love to read without feeling guilty.

5. My husband, who generally lives in Israel, pledged to stay with me throughout the treatments. Last year I visited him twice for a total of 15 weeks and he visited me twice for a total of 13 weeks. This year we will be together for approximately 50 weeks.

6. Said husband does the laundry and grocery shopping as well as supplying me with a cup of lemon grass tea every day (Israeli doctors tout this as cancer curing) and planted a vegetable and herb garden in the back yard.

7. Friends bring me home cooked food and books to read

8. Before chemo, I always drove to NJ to visit my children and grandchildren, but this month my son came with two of his children to Cincinnati and we had a wonderful visit. Next, I am expecting my daughter to visit with her son.

9. I have never felt closer or more loved by my Maker.

10. I feel closer to, and appreciate more, my wonderful friends.

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Cancer Chronicles 6

During all the testing and doctor visits, emails were coming in fast and furious asking when I would be returning to Israel. I had met so many interesting people on the last trip, people that I felt very connected to and wanted to build relationships with. I could not answer them. Nor could I answer anyone in Cincinnati, or New Jersey, or elsewhere about our plans until I told my children about my breast cancer. And I was determined to tell them in person.

We arranged to visit my children in New Jersey immediately after Passover. I had received my first chemo treatment on a Wednesday and Thursday afternoon I had to come back for a shot to prevent nausea. That meant driving to N.J. on Friday, something I hated to do because there was always a risk of not getting there before Shabbat started.

We got up about 4:30am and were on the road at 5:30am. I am used to doing this 11-12 hour trip with very few stops and arriving fairly full of energy. Not this time. I was bone tired and so was Mick.

The next morning I was too tired to walk to shul. I stayed with my daughter-in-law and my newest grandson, Charlie, until it was time to go to my daughter-in-law’s cousin’s house for lunch. After two hours at the table, Mick and I begged off and went back to my son’s house and both passed out.

The tension was building up. Finally Shabbat was over, the children were put to bed, my son and daughter-in-law looked at us expectantly, knowing that something was definitely up.

Since my entire life I have been exceedingly healthy (thank G-d), and full of energy, it was a shock to them, but they were calm, asked pertinent questions and asked what they could do to be supportive.

The next morning, Mick and I drove to my daughter’s house to share the news with her.

For a moment I want to regress and share a story about my children that occurred when they were about twelve years old. It was the Christmas season and I had to work from early in the morning to late at night, as my store was in a mall. I had made a tuna casserole early in the morning and left directions for them put it in the oven.
I got a frantic call from my daughter, saying that the oven was on fire and that she wanted to call the fire department but that her brother would not let her. Knowing the Chicken Little and Mr. Cool dynamic, I calmly asked if she had shut the oven door and asked to speak to David.

I remembered that I had asked one of them the night before to put the chicken away that I had made in the broiler. I guessed that the chicken had been refrigerated but that the greasy pan had been left in the stove. It had.
My son came to the phone and within seconds said, “Oh wait a minute, mom, the other phone is ringing.” I hung up and dialed again. He assured me everything was fine.
Of course, the real story was in the middle. Grease was all over the kitchen and embedded in the ceiling fan. No amount of scrubbing was ever able to remove that grease.

So Saturday night all was calm. Sunday morning all was emotional. Both were with lots of love and support.
We were now headed back. Suddenly I had aches and pains everywhere. Shooting, throbbing, aching, twitching, debilitating and nerve wracking. It was a long drive home and my bed never looked so good as it did late that night when we finally reached Cincinnati.

On the next visit to the chemo center, when I told the nurse about it, she asked what possessed me to make a trip like that after chemo. I felt like asking her, what possessed her not to warn me about some of the symptoms. I had been hearing about people who sailed through chemo and were able to work the entire time. Surprise, surprise.

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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

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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