A medically-trained scientist with a new job in information technology, a new boyfriend and a new house, Deborah had been looking to make changes in her life, but becoming a cancer patient wasn’t exactly what she had in mind.
Back in 1995 I had been seeing my ob/gyn off and on for four years with complaints of irregular periods and excessive bleeding. He thought I wasn’t producing enough progesterone to trigger regular periods and put me on a series of different progesterone products. One day I bled so badly it soaked my clothes and the chair I was sitting on — it was like a massive contraction. But the doctor was very impatient with me and just told me to take pain meds. He never even asked to see me.
When I recovered, I told my boyfriend, “That doctor is history.” I made an appointment with a different doctor for the following week. He was so much more thorough and asked questions the first doctor never did. He said it was probably just hormones, but to rule out anything else, did and ultrasound and biopsy. When he called me up and told me the biopsy showed that I had cancer, it was like being hit with a sledgehammer. The other doctor had me convinced I was just being hysterical. It never occurred to me that I could have cancer, but there it was. Uterine cancer, already an inch big tumor.
I’m a scientist by training, so I went to the bookstore and got books on uterine cancer. I wanted to learn about what I had. It turns out I had all of the classic symptoms and all of the risks. It could have been — it should have been — caught much earlier, in the hyperplasia stage, but the first doctor never did any of the tests. I was really angry about that, but my lawyer said there was nothing I could do.
I had a total hysterectomy, and when they did the pathology analysis on my tissue, they also found I had a 1 cm tumor on my ovary. The doctor told me that and then walked away, leaving me lying in the hospital bed alone with no emotional support. I lay there shaking for the rest of the day. No one asked if I wanted to talk about it. The nurses didn’t know I had a hysterectomy for cancer. And I was sharing a room with a new mother and crying baby. My biological clock had just been squashed and the only person I had heard of with ovarian cancer was Gilda Radner, who had just died.
The doctors spent the next three weeks debating what my treatment should be. Was it two separate cancers? Was it metastatic ovarian or metastatic uterine? My ob/gyn worked with a radiation oncologist and they decided to call it two separate cancers, both stage 1, so I didn’t have to have chemo. But I did have two sessions of internal vaginal radiation.
Which Side of the Odds
When I saw the ob/gyn a year later, he said I was cured. I was angry because one of the things I struggled with was the fear of the unknown. We don’t know if it’s coming back. With these cancers, there is a high risk of recurrence. You never know what side of the odds you are on. There was no way in hell he knew I was cured. The real next step was follow-up. That was the only way to tell. At the time of my diagnosis, I had just moved into a new house and I pleaded with God. “Just give me two years to enjoy my new house and boyfriend,” I asked. That helped me with my fears, and I got a lot more than two years.
But, two years after the cancer, I started having lower back pain. I was trying to act young and to date and have fun. I went roller skating and fell on my butt, whacking my tailbone something fierce. It jolted right up my spine. I thought that could have set things off, or the radiation, but I started having back pain just walking the dog or mowing the lawn. My boyfriend (now my husband) started doing more and more things for me around the house.
Dieting or Dying
I kept going for checkups, and the doctors found that my kidney function had been decreasing. We blamed it on the pain meds I was still taking for my back, but when it didn’t improve, my primary doctor was disheartened and referred me to a nephrologist. The nephrologist said I had third stage kidney disease, a step before needing dialysis. I also had changes in bladder and bowel behavior, so the doctor thought it could have been signs of a blockage and ordered a nuclear scan. My right kidney was down to 20% of normal function.
Next I saw a urologist and this doctor really listened as I told him I felt like I was dying. I had been heavy all my life and had been losing weight intentionally, but it felt way too easy. Usually I feel like I want to kill someone when I’m on a diet, but this time, the pounds just fell away. I had lost over 100 pounds and was certain something was going on.
The doctor ordered a CT scan which found a grapefruit sized tumor. I knew it would be cancerous. It had been 22 years since the first diagnosis, but there was no question in my mind that it was related. (The hospital no longer had the tissue samples from my first surgery in order to verify.)
Soccer Ball Surgery
They scheduled the surgery for a week later and by the time they opened me up, it was the size of a soccer ball. The oncologist said it was the most difficult surgery he was ever involved in. The tumor was growing around major arteries and veins and they had to cut out all sorts of other stuff just to get it out. They called in a gastro surgeon and two vascular surgeons to help and had to replace my total blood supply three times over because of a nick to one of my veins. It was a miracle that I survived.
They kept me in the ICU for two days, totally sedated and told my husband I wasn’t out of the woods yet. But I hung in there. I feel so blessed to have had such skilled surgeons. They pulled me through it. They almost stopped the surgery twice because they thought I wouldn’t survive it, but I hung in there, despite being overweight and already 64 years old. I went home four days later, but that was not the end of the ordeal.
I went back into the hospital for them to remove my sutures, and when they did, the wound opened up. It was a 6-inch by 2-inch by 2-inch gaping hole. A home health nurse came to the house to teach my husband how to take care of the wound, vacuuming and packing and wrapping it to keep it sterile. Slowly, it started to improve. And then they started me on chemo.
Second Death Threat
When I had the first chemo, I went into anaphylactic shock. I thought I was going to die. When you start getting chemo, the nurses are prepared for a reaction like that and had an Epi-pen right there. “Let me know if you feel anything weird,” the nurse said before she started the infusion. Right away I said, “I see stars.” It was that fast. She stopped, put the Epi-pen in, and just like that, I couldn’t breathe. The pain was intense, like someone stabbing my heart. I felt waves of pain from my shoulders to my knees, but I couldn’t breathe. I tried to scream but it sounded like a frog croak.
My husband held me and the nurses flew into the room to get me on oxygen. They put the chair back, opened up my airway, put on a full face mask on so that I could breathe through my mouth. I had five more waves of pain from my chest to legs. I just kept squeezing the hand of my chemo nurse. It was unbelievable pain. I never realized anything could be so painful, and assumed I was having a heart attack. When things calmed down again, they ordered an EKG to make sure my heart was okay. Then a pharmacist came and they loaded me up with steroids. An hour later, they tried again. That was scary. They kept the crash cart just outside the door, but I made it through.
Three Teams, Ten Days
Ten days later, when doing a wound treatment, I thought the drainage smelled bad. They cancelled my next chemo and did a CT scan to see what was going on. Turns out I had an abdominal abscess. So, I went back to the hospital for another surgery, this time to open up the wound and drain the abscess. I was in the hospital for two weeks this time as they tried to figure out how best to control the bacteria causing the infection. They got an infectious disease doctor involved and eventually sent me home with IV antibiotics. It’s a good thing I had worked at a dialysis center for so many years, so the needles didn’t freak me out.
They rescheduled the second chemo treatment and tried to get me back on track. I had no problem with it, but 10 days later, I developed a fever and my pulse rate kept climbing. My doctor told me to go to the emergency room. It turned out my white blood cell count had really tanked. The abscess had also gotten larger. I was really sick and was hospitalized again. Now there were three teams of doctors involved trying to figure out what to do — the infectious disease experts, the oncologists and the interventional radiologists. They put a drainage tube into the abscess and eventually sent me home again, with three medical treatments to do at home: dressing the drainage tube, the IV antibiotics and the wound cleaning and packing.
Best Thing Ever
My husband was amazing and took it as his responsibility to care for me. The dining room table was covered with medical supplies and he just did it. It was kind of surprising that my husband, a welder by trade, could take to that so well. Even the doctors and nurses involved in my care recognized what a great job he was doing. The infectious disease doctor even said at one point, “The best thing you’ve got going for you is your husband’s attentive care.” He was so proud of all the praise he was getting. We had had some issues in our marriage before the recurrence, but he really stepped up. Even with my medical training, I couldn’t look at that wound, but he took care of it. He just did it.
I ended up only having the two rounds of chemo, instead of the six they had planned. After I recovered from the worst of the infection, I told doctor I needed to wait before attempting a third. I saw no point in doing chemo if the abscess was going to kill me first. I was on the antibiotics that they give people who have the plague, I had developed A-Fib, was on blood thinners. If I got another infection, it could kill me. So, we stopped. It took forever for the abscess to be gone and the wound to heal, but it did. And they started me on hormone therapy instead, since it was an estrogen-based cancer. They put me on anastrozole, which suppresses estrogen, helping to prevent the cancer from growing. It gave me nasty hot flashes, but that seemed minor compared to what I had already been through.
As you go through this process, there are always surprises in who is supportive and who isn’t. You get the opportunity to see how much people care for you. I was amazed at the flowers in my hospital room, and another friend brought a bird house. I was truly touched. But then it sort of fades and goes away, which is confusing and sometimes hurtful. People want reassurance that you are going to be okay. They don’t realize that you are still sitting there hoping it’s taken care of but not knowing. There is no guarantee that you are on the survival side of the equation and no one else understands that you are afraid of that. When it’s your body, it’s not so easy.
At the time of my first diagnosis, work was a big part of my support. My boss and colleagues, even my clients. One colleague who had had cancer earlier wrote me a card that said, “When you want to talk, give me a call.” When I talked to a girlfriend about my fears, she was not very supportive, even thought I had spent many hours listening to her when she was dealing with chronic fatigue and depression. She said, “You need to get yourself some psychological help” and it felt as if she just called me nuts. I couldn’t talk to her, or the cousin who had sent flowers and then disappeared, or my mother who was scared to death. So, I called that co-worker and talked about being scared with her. She put me in touch with a support group of other cancer patients going through the same thing.
I’m Not Nuts – it’s Normal
The group was a lot of talk, meditation and other supportive care. The first time I spoke, I said I felt blessed that they caught my cancer early, but I was so scared. And as I said this, everybody was nodding. That’s when I realized, I’m not nuts, this is normal. This is my new normal and I have to learn to deal with it. You don’t get your old life back, you have to breath in and let it go. You develop a new normal and learn to live with it. The reality is that you had cancer and that it can come back. Now I’m not scared about it anymore. I know it will come back — you know they couldn’t have gotten all those cells — it’s just a question of time.
I’m a positive person but I lost my positive attitude with my first diagnosis and had to fight to get it back. The positive affirmations and breathing techniques I learned through the support group helped. It also helped to set some goals. Just because you have cancer doesn’t mean you don’t have a future. So now, I want to live every day to the max, but save for the future too. It’s a balance I strive for. Learn from yesterday, make use of today, and plan for the future. The program had us focus on 5-year and 10-year goals. One was to marry my boyfriend, and I did. Setting goals is empowering. When actually achieve one, it’s like wow. I did that.
Now, I have survived ovarian cancer for 22 years. At some point I may regret the decision to have stopped chemo, but not yet. I feel comfortable about that. I was more afraid of the abscess than the cancer and will face whatever comes next.
Two years after sharing her story, Deborah had a reoccurrence. Her immune system and her kidneys had never regained full health after the abscess, and she was unable to tolerate the treatment. She passed away in the spring of 2019.
2 thoughts on “Deborah”
Wow. I hear and feel every single thing Deborah went through. It hurts my heart to know she’s passed.
I absolutely hate hearing patients having these horrendous experiences with doctors too. I hope she reported this behavior back then. I feel extremely fortunate that I’ve never had my regular doctors treat me like that (basically like a number, or even worse, like an animal with no empathy or emotion) There were 2 instances when I was treated like that and they gnaw at me to this day.
One was merely a 3rd or 4th opinion, yet this doctor was the Chair of Neurology at a very good hospital in NYC. I’ll never forget that experience! A fellow brain cancer survivor/thriver was with me and when I walked out of the appointment shellshocked, she said, “I didn’t know if it was my place to speak up, but that guy was a total _____ .” (insert whatever word you like).
I went back to my oncologist, who had recommended him and the individual who had pulled strings to get me in to see him. I told them how horribly I was treated. It also turned out he was wrong, thankfully!
During the appointment, he very bluntly and obnoxiously told me he believed my tumor had recurred, which would have been my 2nd recurrence in only 4 years from my initial DX. I would have had NO option but to enter into a clinical trial. There was literally only 1 open for my type of tumor. This was also the week of Thanksgiving 2018, so I spent my holidays believing I was just sitting around with another tumor in my brain… Then, my scan in January confirmed, nope, just good old radiation necrosis!
The other disasterous experience was with a neurosurgeon. I expect surgeons to be composed, professional and know my case, especially after waiting 3 hours to even get into an exam room! My original surgeon, who had been the Chief, retired. He remains one of my greatest heroes. However, this surgeon was not the new Chief and had in fact previously performed surgery on me alongside my plastic surgeon 6 months prior to this horrid evaluation for yet another proposed surgery. During this evaluation it was like he was seeing me for the 1st time! He was quite dismissive towards both me and my mother. Yet, not towards my husband and father. Hmmm…what decade is this and who is the patient?
He proposed an incredibly invasive surgery – to insert a shunt that would drain the fluid in my brain into my digestive area to be absorbed and then flow out through the digestive tract. Ultimately, I did have to undergo that procedure BUT only after my new neurosurgeon confirmed there were no cancerous cells in my brain.
This other surgeon said it was “unlikely” there were any cancerous cells, so he would just simply place the shunt into my brain without first testing the fluid or any tissue.
Um, “unlikely” is NOT good enough. Sorry. He then argued semantics with me – “biopsy” vs. “needle aspiration”. Yet, he assured not me, my father, that he would test the fluid & tissue AFTER he placed this shunt in my body. What if the tests came back positive for cancer? What then? “Ooops, we just redirected cancerous cells from your brain into your digestive tract.” Sorry, not happening!
Beyond all that, he got a knock on the door from his assistant, they whispered and he bolted out. No, “Goodbye.” No, “”I’ll be back in 5, 10 minutes.” The 4 of us stood around looking at one another. My father asked me, “Is he coming back?” I said, “I have no idea!” Well, he didn’t. His nurse simply came in and brushed it off as if this was normal.
If you’re going to operate on my brain, I expect composure! So, I filed a complaint with the hospital. He called and apologized, but continued to argue with me about the “likelihood there was no cancerous cells in my brain”.
Thank the Lord for my new neurosurgeon, another one of my heroes! Amazingly, they both trained under my former surgeon. I don’t understand how that surgeon thought I would have any confidence to undergo my 5th of what now totals 7 brain surgeries in under 6 years when he acted that way in his clinic. Just because you work at a prestigious hospital and wear the “white coat” doesn’t mean you get “a pass” for being immensely unprofessional.
Also, I completely agree on the use of the word “cured.” I wrote a piece on “remission” on my blog that will be published by Elephants & Tea. If Cynthia would allow me to share the link, I will. I don’t want to do so without her permission. So, I’ll leave it to her discretion.
There is no “cure” and cancer will always remain a part of me, even if there’s no cancerous cells (that we know of) in my brain. I’m very positive, or do my best to be at least. However, cancer turned my world upside down, inside out, and I will never be the person I was previously. I think of it like they measure time as B.C. (Before Cancer) and A.D. (After Diagnosis). I still grieve the former “me”, but I’ve also changed for the better as well.
Rest In Peace, Deborah.
Too often, doctors forget that we are the experts on our own bodies and need to be treated as partners in care decisions, not dismissed!