I Try to Hold on to My Spirituality but…
My name is Deborah and I’m 64.
I had a hysterectomy when I was 45 because I had endometriosis, which propelled me immediately into menopause. I was too old for children at that point, but afterwards I went through a little bit of a mourning period knowing for sure that I’d never have children. It wasn’t overwhelming, but I needed to face the reality that any kinds of fantasies or dreams I’d had about that were over; again, that part of it wasn’t as significant because I was more worried and frightened about going into surgery. But I decided to have a hysterectomy party before I went in to the hospital—people brought me joke gifts, Tampax and so on…I made light of it, and that was on purpose and it helped me. Then my gynecologist, whom I like a lot and still have, put me on a high dose of the estrogen patch to alleviate hot flashes, which made me feel much better and very even. I liked the higher dose, but shortly thereafter she explained to me she felt it wasn’t safe at that level and halved it. I’m saying all of this because my breast cancer, which happened a year and a half ago, turned out to be a type directly linked to a surplus of estrogen, so now I’m on an estrogen blocker called Letrozole.
My breast cancer surgery was two months after I was diagnosed. It had been about two years since I’d had a mammogram, and after the most recent one I received a letter from my physician’s office telling me to come in for a deep-tissue mammogram. Well, I ignored it, I did. And then I got a second letter and forced myself to go in, and right after I had that done I could tell by the expression on the nurse’s face that it probably wasn’t going to be good news. And then they performed a biopsy, which wasn’t easy—it wasn’t intolerable, but I wouldn’t want to go through it again. And once more I could tell by the looks on their faces that it was serious, and I had to go home and wait for their phone call. I’ll never forget sitting by myself at my dining room table when my gynecologist called at 8:30 at night to give me the news. That was hard. I was alone, and my wife was in the other room with fast-advancing Alzheimer’s and I couldn’t tell her, so I just prayed that it would be lumpectomy. But then they saw something else they didn’t like, so I underwent a deeper biopsy on my right breast and another one on my left. I was positioned on my front on this table-like device where my breasts hung down and I simply willed myself to get through it. Then it went from being a lumpectomy to a mastectomy on my right breast, but after the biopsy the surgeon said she’d seen not-good indications in my left breast too. I looked at her and said I suppose you’re telling me I should consider having a mastectomy on both breasts, and she said yes, and I agreed with her.
The surgeon and I had a mutual best friend through whom I once met her briefly at an event years before, and that ended up being extremely important, because we knew of one another and I trusted her. Her name is Dr Nina Horowitz at Smilow Cancer Center at Yale-New Haven Hospital, and she’s a big deal at Yale; she’s the breast cancer surgeon of choice in this area, and there was certainly good word of mouth about her. In the days following my surgery I couldn’t go back to my home because of my wife’s Alzheimer’s. I didn’t tell her about this because she would still probably have understood the meaning and implications of the word cancer, and knowing that she was unable to take care of me would have sent her into an even worse state. It was a horrible, impossible situation, so Nina’s and my mutual friend put me up in a hotel near Yale-New Haven, where I could get room service and watch TV and have visitors, and what a gift that was.
I also had extraordinarily good visiting nurses while I was there, they were very professional and I liked their manner; one nurse and I really connected, her name was Sidelie. I needed to chart everything that was going on with my body, like how much drainage I got from each breast, change and clean the drains–it was terrible. Sidelie would take my temperature every day, and on the fourth and then fifth days it was slightly elevated, which she didn’t like to the point where she asked me to call my doctor. Well, I didn’t listen to her; by then it was Thursday and I thought I’d wait and call on Monday, but then that Friday afternoon I noticed all this yellow tissue discoloration, which freaked me out. I called our mutual friend and asked her if she could contact my doctor on her cell phone; she did, and Nina got in her car and drove to my hotel and then paved the way to get me readmitted immediately through the emergency room. It saved my life, that relationship I had with Nina and our mutual friend saved my life. I got to my room and they immediately started pumping antibiotics into me, but by two days later they weren’t working and so I went under the knife again. Then, the next thing I knew, several doctors came in and said to me did you know that you’re allergic to penicillin, and I said no, I’m not allergic to penicillin, and they said well, yes, you are. As it turned out I developed the allergy because they’d given me so much of it in the first round that it almost shut down my kidneys. So they switched the antibiotic protocol and over a period of time it started working; then it was a matter of waiting it out in my hospital bed and recovering from the second surgery, which took over three weeks. When I went back home I was covered with bandages that had to be changed daily by a visiting nurse for the next six weeks, which was unbelievably awful and scary. At least I wasn’t in pain because I was on lots of drugs for that and also for emotional fear.
I try to hold on to my spirituality, but I haven’t been spiritual in the last two years because of what happened to my wife. I feel that there couldn’t be any kind of a higher power that would have done that to her. It’s been incredibly hard to sustain that, and I’m working to get it back, but the hardest part of everything for me has been taking care of my wife. If there is a spiritual guide in my life it’s Sidelie–she saved my life twice. Six weeks after I’d gotten home from the hospital she put a medical bag on me to drain my breasts, changing it every three days. One day I had an ache in my calf that I told her about, and she didn’t like that. She said to me I know how you are, but I am telling you to call your doctor. Well, that was the last thing I wanted to do, but I did it for her, and it turned out to be a blood clot.
Certainly I’ve learned the lesson over and over of not putting things off with the mammogram and the fever and the blood clot. The mammogram was just another line on my to-do list that I kept postponing, but not paying attention to the fever and the blood clot were out of fear. And I also hope I learned another lesson about taking better care of my health, because that was never a priority for me before. The other thing that’s hard for me, and I think for many people, is to accept help, because my sense is that most of us prefer to do for ourselves; but when I was in that condition I required help even with basic everyday tasks like taking a shower.
I feel very vulnerable about having scars from my mastectomies. It’s not about being attractive to other people, it’s about the fact that I feel my body looks bad and I don’t want people to see my scars. If I ever get into another relationship I’d have to be with someone who’s truly sensitive about that, someone who I could feel susceptible with.
And even though intellectually I understand that I can’t compare my own difficulties with the life experiences of other people, that my own are my own, I still think about those poor people in Orlando, or those parents in Newtown. I thought that if those parents in Newtown could get through losing their children in such an horrific and senseless way then I can get through my own struggles, and thinking that way actually helped me. And I have a will to go on, to keep going on. I have good friends, I got through it, and I learned that I have resilience.
I never researched anything about my hysterectomy or menopause, and I never wanted to have too much information about the surgeries or clinical aspects of what was happening to me. That’s sort of the way I’ve approached life, and that could be very bad or very good. I didn’t really want to know about the hysterectomy surgery, I don’t like the mental images of my body being cut up, and I’ve continued with that philosophy and approach to all my medical issues throughout.