Photo: Linda Kinsey/Northeast Ohio Media Group
RIP Jerry Rubenstein
On November 16, 2017 we lost Jerry. We honor his memory every day.
By Jerry Rubenstein
When I was diagnosed with breast cancer the first time in 2003, I felt totally lost.
My wife and I thought it was best not to tell anyone I had breast cancer since our kids were very young and I knew first-hand how mean kids can be. A man with breast cancer certainly would not be well received by children or adults. I lost track of the times I heard someone say to me, “I didn’t know men could get breast cancer.” We thought it was best not to tell people what kind of cancer I had unless we really felt comfortable with the individual we were talking to. I was embarrassed to have breast cancer, plus who would believe I had cancer, let alone breast cancer? I was still running 6.2 miles every other day and lifting weights. I didn’t look sick at all, and people would even talk about how healthy I appeared.
My cancer came back in 2013 with a vengeance. I didn’t want to go through all those same feelings again, so I decided it was time to talk about my male breast cancer publicly. In the spring of 2003 I noticed a small lump under my right nipple. I thought it was just a cyst, but my wife saw it and begged me to get it checked out. Being a typical guy, I waited a while before I saw a doctor about it. My doctor said he didn’t know what it was, it couldn’t be breast cancer, but just get it the hell out! It took six weeks to see a surgeon and another six weeks for the procedure. After the procedure the surgeon told my wife it was just a cyst. That was before the biopsy report came back.
When the surgeon called me a week later with the biopsy results, I was upstairs on our computer entering bills to be paid. My wife was downstairs. My daughters heard me talking to the surgeon and my older daughter went running to my wife and said “Mom, Dad has cancer and needs another operation”. My wife came running upstairs in the room with a look I had never seen before in her eyes and no one should ever have to see. (Sadly, I have seen this look of fear many times since.) In less than a week I had multiple scans, numerous unpleasant tests and then a mastectomy.
On the day of the surgery I had a lot of prep work before the procedure. One procedure required injecting me with a radioactive dye to go to my sentinel lymph node. They couldn’t use anything to numb the area, it was the same spot where I had my lump removed the week before. It was so painful; I’ve never experienced anything so painful before. It was worse than the pain I suffered through when I had a herniated disc in my back. Since they put me on the surgical list at the last minute, I was the last procedure of the day. They didn’t start on me until 6:00 PM and I had been fasting for over 24 hours. After the surgery it was really late and I was starving.
I asked for food, and I was told the kitchen was closed, but they found me a sandwich. I started to eat, but I fell asleep before I could finish. When I woke up the next morning, I was still holding a half-eaten sandwich and was in a pink hospital ward with pink furniture. Yes, I was in the breast cancer ward, but because I was a male, I was put in single room. I called my wife and told her to take me home immediately!
The surgeon didn’t tell me I would lose my nipple until the day of the surgery. All he told me was that I would lose a little bit of breast tissue and it would hardly be noticeable. Well let me tell you, I notice it all the time and it is constant reminder of what I went through and still am going through.
Since I lifted weights and ran and was outside a lot, I was very upset with how I looked after the surgery.
The surgeon said I would hardly notice the difference. He was WRONG! It stared at me every time I got in and out of the shower and I was sure that if I went without a shirt someone would notice.
So I decided to have the nipple reconstructed. To reconstruct the breast would be much more involved and would require cutting my muscle to insert a spacer. The results were not good — it faded away within a few years. I have had it redone three times it looks OK now. The first summer after my mastectomy I would never take my shirt off, even at the pool I would wear a shirt. I was too upset by the scar I had on my chest and was sure someone would notice. After surgery came the medications. I had every side effect from the Tamoxifen, except vaginal bleeding.
The leg cramps were so excruciatingly painful I thought the muscle was going to blow off me. It always happened in the middle of the night and I would scream for my wife to massage my leg (always the left leg). I also had some depression (meds did not help and I do not like anti-depressants), but I tried to get through it. I also got hot flashes and always carry paper towels to mop my forehead.
I’ve had to change my pajamas a numerous times in the night. One time I had a really bad hot flash and my daughter was learning to drive. She was behind the wheel; so I rolled down my window and stuck my head out telling her to go faster so I could cool off. She was freezing and blasting the heat in the car. It was February in Cleveland!
As you might imagine, I was dealing with test after test. At one of my mammogram appointments, the nurse kept calling for “Geraldine, Geraldine.” She just presumed the computer had made a mistake. This same nurse ended up doing my mammos for three straight years and she always talked to me about that mistake.
Near the end of 2012, the doctor told me the cancer was gone and I no longer needed to come in for annual exams and mammograms. I still scheduled an appointment with him and a mammogram a year later. I was told the odds of my breast cancer coming back were 100-1 and I did not carry a BRCA mutation. No more mammos.
Six months later I started coughing, and then I began to coughing up blood. I went to a doctor who told me it was bronchitis and prescribed antibiotics. When the meds didn’t work, the doctor thought it might be pneumonia and he gave me steroids. Then I finally saw my regular doctor who did an X-ray, blood tests, followed by cat and pet scans. He thought I had sarcoidosis, but a lung biopsy proved different.
On October 17, 2013, on his way out of the recovery room, the surgeon said to me, “YOU HAVE CANCER.”
I was barely awake from the anesthesia When he saw my wife he said, “Mrs. Rubenstein I have two things to tell you, your husband has cancer and it could be anywhere in his body”. He then left, saying nothing else to her and left her crying and asking if I knew yet. Three nurses went to try to calm her down.
One day in April, I got violently sick while trying to run and I couldn’t catch my breath.
My running times had been getting progressively worse and my breathing had become very heavy.
A pulmonologist discovered there was an obstruction in my bronchial tube and thought it was a tumor.
He told me the obstruction had been on every previous scan and it was mentioned in all the reports. No one had ever told me about this. Turned out the cancerous tumor was blocking 80% of my bronchial tube.
I needed radiation and chemo and if nothing was done, I could possibly lose my lung.
I also lost 30% of my lung capacity.
Another pet scan showed the cancer had spread to my bones (two vertebras) and again,
these findings were on previous scans, but never discussed. More radiation was scheduled.
I got so sick from the radiation that I couldn’t swallow anything. I couldn’t even drink water
and my chest would go into spasms. I had to take a week and a half off of work. The lining between my lungs and heart got irritated and inflamed from the radiation. Since the radiation had burned my lungs, the doctor told me I probably would have a cough for the rest of my life and there was very little that can be done.
Crazy me, I kept running and lifting my weights as always though. I have a low BMI of 8-9%, so when I needed shots in my belly with medication to strengthen my spine, the injection site would be very sore for several weeks. The pain would finally stop just in time for the next injection.
Every time I would get the shot the nurse would tell me I needed to gain weight.
No, I need to get rid of this cancer! was told that the cancer in my bronchial tubes could come back as frequently as three times a year.
The radiologist told me that he could put radioactive seeds in my bronchial tubes to kill it.
Isn’t that reassuring? As of now the tumors have not come back in my bronchial tubes.
The cough continued and I could not concentrate at work. I was making mistakes
and not able to keep up with my work, partially because I was constantly going to
doctors’ appointments. I had used over 300 hours of sick time in 9 months and was concerned I would use up my FMLA time. My boss was also getting very frustrated with me and sending nasty emails, such a supportive and understanding boss. Because I was under so much stress and my health had to come first, my social worker in the oncology department told me I needed to go on disability. I knew this would be devastating for my wife and hard on my daughters.
The cancer was about to take another part of my life away from me that I will never get back, my career.
I had to see a doctor for my disability claim. What is the doctor going to do with me I asked?
Cut me open and verify the cancer is in me? The nurse heard my cough and presumed that’s why I was seeing the doctor. I explained my cough was the result of my cancer.
He said, “Oh you have lung cancer?” I said no, breast cancer that had spread to my lungs. He then asked if I smoked and if this was lung cancer again, several times. Once I finally got approved for disability, I had to go to the office for a final “exit interview.” I thought I was just turning in 21 blue shirts and my badge and even packed my own lunch so I could take my meds, but there was a surprise party for me. I should have known when they insisted on an 11:00AM or noon meeting. It was really nice to see everyone.
They gave me a clock, personalized certificate and a lunch. I heard that things in my department were not going well and most of the staff kept saying they wished I was coming back. I know I cannot work, because I don’t know what will happen with my health next.
Between all the doctors’ appointments, the stress at work, and trying to deal with male breast cancer, I needed to get some help. I tried finding support, but there was practically nothing out there.
I contacted one organization that has a famous question as their motto. One asked by every cancer patient. They set me up with a mentor since I wasn’t permitted to join the women’s group. The mentor was a retired military officer whose main concern was that I was getting good medical attention. When I told him where I lived he was glad to know I was getting good medical care. He was supposed to keep in touch with me, but I never heard from him again. Several years later, I called this same organization to see if I could mentor. They clearly needed more mentors and I felt I could help someone who was going through what I went through. When I called to ask if I could help they just blew me off. They clearly were not interested in helping men with breast cancer.
Another organization gave me a mentor who I got along with really well. But he died of his breast cancer only 6 weeks after I connected with him. I started going to the Gathering Place
(a place that helps those touched by cancer) in April 2014. I was nervous and felt that since I would be the only man with breast cancer that I would not get much out of it. But I was desperate for some support as I could not get a mentor and I felt all alone with this cancer. I went to that meeting and have gone every week since. I found a group that understands what I am going through. Even though they have different cancers we all have the same fears. I also have learned a lot about cancer treatments and what to do. I am extremely grateful that the Gathering Place is a support system for so many of us.
Despite everything I have been through, I have continued to run and lift my weights. I look pretty healthy, but it’s not easy doing weights and running when you are coughing your head off and have breast cancer in your lymph nodes, spleen, lungs, and breasts. I keep doing as much physical activity as possible, because I really do enjoy it and hope it will help me fight the cancer. My doctor continues to try treatments that allow me to keep working out. From Faslodex to Xeloda, whatever it takes.
People can’t believe I’m sick when they see me, because I look pretty good even though I have the cough. While waiting to get a radiation treatment one time, someone kept looking at me and finally said, “You look too fit to be here.” My reply, “I wish that was true!”