I started megestrol with resistance. I do not like pills in general. I had to take four of them each day. Two in the morning and two in the evening. The first few days, I was bad about it that I would question, "Did I take my pills?" Then I would pour all of the pills on the table and do a recount. I eventually accepted it as part of my routine since then. However, I do not like the side effects. Megestrol is typically given to patients with AIDS to increase their appetite. This did the opposite for me. I lost my appetite. I am rarely hungry those days. I have dry mouth and nose. I am more thirsty. I am out of breath when I do work out which is not the norm for me. I was spotting on a daily basis. I asked about that. They said the spotting is because of the cancer. The longer I am on megestrol, the spotting has slowly diminished.
I am feeling tired more. It's hard to assess if it's the cancer or the hormone therapy.
CT scan was done quickly. At the appointment, I was filling out the form and one question hit me. "Do you have or did you ever have the following...". Cancer. Now I need to say yes to that. The CT scan indicated that the cancer did not metastasize outside the uterus. Therefore I was not stage 4.
I began researching to try to understand this cancer. Some people offered theories which did not help. I was not on a
plant-based diet. (I wish I could be on a total plant-based diet but I
can't due to other health reasons). I did not take birth control pills
long enough. I ate too much soy before when I shouldn't eat soy. I
never delivered a baby. I had childhood trauma. Yada yada. FACT: I
have cancer. Nothing I can do about my past to change that. Gotta deal
with it now.
I really wanted to meet women who had endometrial cancer BEFORE menopause. They were hard to track down. Endometrial cancer is more common in older women after menopause. At my post-op visit with Dr. Hays, she was apologetic. She said that she would have never suspected it was cancer because of my age. If I was older, she would have suspected multiple polyps to mean cancer. I decided to post on Facebook about my cancer. It has helped connect me to the right people and groups. I was able to track down a few women close to my age on Facebook and cancer support forums. Their stories have been helpful.
Dr. Diaz-Montes sent my information to the Anne Arundel Medical Center's Cancer Institute's social worker who called me to offer her support. I later learned that because I circled 10 for my stress level on the initial paperwork was the reason for her call. She asked me where I was at. The call was at the beginning of February. I told her I was somewhere between 7 and 8. I am not as stressed out but... I am still overwhelmed and trying not to drown.
The way I understood it was that there were three paths: 1. full abdominal hysterectomy and experience surgical menopause right away or 2. try to get pregnant if my cancer is in temporary remission from the megestrol. The latter carries more risk since pregnancy hormones can accelerate the growth of cancer. I have to stop taking megestrol in order to get pregnant then do #1 path. OR 3. Do nothing and I have about two years to live. I remain uncertain today but things are becoming more clear as I arm myself with more knowledge about this cancer. I wanted more details. I asked for more tests to help me understand where my cancer was at. Good news: I do not have cervical cancer or ovarian cancer.
I also learned that doctors have differing opinions. Dr. Hays thinks I should get pregnant. Mike said, "It's because it means a new yacht for her." Dr. Hays is a obstetrician/ gynecologist. Therefore, if I was to get pregnant, she would be working with me until the baby is delivered. It benefits her. I wanted to get a second opinion locally. I scheduled to see a different oncologist. I told them it was a second opinion. They told me to send them my reports. When we showed up for the appointment, she told us that she spoke with Dr. Diaz-Montes and agree with her recommendations. Hmph. That defeats the whole point of getting a bias-free second opinion. Agh. I felt backed into the corner. On the top of it, I had to fight for a live sign language interpreter with that office. They insisted on using the video remote interpreting (VRI) machine. I kept on fighting and then the hospital agreed to pay for a live sign language interpreter but said that if I went back to that office again in the future I have to fight with them for a live interpreter. That must change. The principle behind that... if we ask for a sign language interpreter, provide that. No arguments. No resistance. Simple as that. VRI is iffy. It's too iffy for such important appointments like this.
I am a researcher at heart. Heck, I am working on my doctorate. I love to research. I love finding information. In the past, the Internet has been instrumental for my other medical issues. Cancer... not so. There are fear tactics out there. There's an extremist organization that is AGAINST hysterectomy. Unfortunately I found their information which sent me into uncontrollable tears and telling Mike, "I would rather let the cancer kill me!" I have stopped researching. I am just looking for stories from people to help me learn. I have met women with endometrial cancer at stage 1 to stage 4. Their stories are different but learning about their treatment options help me ask questions about my own treatment options.
I was feeling resigned. I wanted more answers. Dr. Diaz-Montes' office has a nurse navigator who was instrumental in answering my questions whenever I had them. But one day I learned she gave me a wrong answer. My trust in her was gone. I no longer call the nurse navigator. I wanted to talk with Dr. Diaz-Montes again. I asked for another appointment to talk about everything with a live sign language interpreter. They agreed and it was scheduled for February 11th. I felt somewhat connected with Dr. Diaz-Montes after the appointment. She answered all of my questions although I wished for more depth and possibly sensitivity. The cancer cannot be staged without taking out the uterus. Once it's out, they will look at the uterus and determine the stage. It was becoming inevitable that my uterus would have to go and I was working on coming to terms with it. I continue to struggle with why some women with endometrial cancer kept their cervix and ovaries while Dr. Diaz-Montes wanted them all out. I tested negative for cervical cancer and ovarian cancer. Grade 1 is a good thing. I asked her how she would treat my surgical menopause. She said she did not want me to go on hormone replacement therapy (HRT) for the rest of my life as it's too risky but will prescribe me for a SHORT period of time to help manage symptoms.
Yet I am part of a surgical menopause support group to learn more about what I need to prepare for. The members disagree with Dr. Diaz-Montes not wanting me on HRT at all for the rest of my life. I really need to understand why. I am seeking for answers on that one.
I was drowning in more questions and so much uncertainty.
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