I truly thought I had put my blog to rest, once and for all. However, as we all know, life has other plans for us when we least expect it.
When I saw my oncologist, Dr. O, back in March for my normal 6 month check up, she told me right then, eye to eye, that if I didn’t loose the weight that I wouldn’t live to see 70.
Holy Shit Batman, you have my attention. She also told me that if the cancer returned, if it was in my bones, there wasn’t anything she could do. Gulp. I’m still listening, with very wide eyes and attention to detail, she was super serious with me. Dr. O continued to tell me that it was time that I have weight loss surgery, how my diabetes would be gone, blood pressure gone, high cholesterol gone! Um ok. I’m still paying attention, but my head was swimming, I was by myself and on information overload. That was a lot of information to digest in such a short amount of time.
Of course, I knew I needed to loose weight, no one needed to tell me that, I could tell every time I saw my reflection, every time I bought new clothes, each time I sat down and my muffin top could be used as a table top. Yes, I knew. But there was something about hearing that I wouldn’t live to see 70 if I didn’t get the weight off that truly motivated me.
After making my next appointment (6 months later), I called my husband with my latest report of still being ‘no evidence of disease’ and then the news of the weight and what it meant. I then came home, called our health insurance to inquire about coverage for weight loss surgery, it was time that I jump start this new journey, 70 doesn’t feel that far away. When I hung up with Aetna, I was horrified, our current policy did NOT cover any type of weight loss surgery, regardless of what my medical history was or what any doctor had to say, nope, not gonna cover it. By the time my husband got home, I was a emotional mess, I had practically buried myself, I could see my life ticking away minute by minute. He hugged me and that was all it took for me to fall apart. In his gentle and encouraging way, he told me that we would figure it out, and that we did. I ended up having the gastric sleeve surgery just 3 weeks later. I want to live long past the age of 70. I have grand sons to watch grow, more grand kids to come later (I hope) and life to live! Damnit, I’m not ready to die, but having 70 stare me in the face is a strong wake up call.
About 6 weeks post surgery, I found myself passing a kidney stone and in the emergency room. The emergency room doctor ordered a CT Scan to check for more kidney stones, however, his report floored me. He came in and told me that there were no signs of a kidney stone but that I had a cyst on the inside of my left ovary. WHAT? I nicely told him that I didn’t have ovaries, he actually argued with me about it. He even went back to check the CT Scan to make sure it was mine and then proceeded to tell me that I needed to go back to the surgeon who took them out, because I clearly had a cyst on the left ovary. WHAT? That’s simply not possible. As soon as we got in the car to come home, I called my gynecologist who is the one who not only got me to have my mammogram that discovered my cancer, but he treated me for infertility, a high risk pregnancy, performed a complete hysterectomy and made sure I had a copy of my pathology report once my ovaries came out, I trust him. He has hugged me and prayed over me numerous times during the past 28 years that he has been my doctor. Anyway, he was out delivering a baby, but called me as soon as he got back in the office, he too said he had taken my ovaries out, but wanted to see the report. You can bet your sweet self, I drove over to the hospital, got that report and went back to his office where we scheduled an exam for the next morning. That exam didn’t lead to anything more than a sonogram that showed what looked like a cyst, no biggie. But……it could also be a tiny bit of ovarian tissue that was left behind when my ovaries were removed in 2013, ovarian remnant syndrome. Google it. While it’s rare, it does happen and typically presents no problems for the average person, whew, good. We discussed what we would do moving forward – re-check me in December when it was time for my well woman exam, unless I started having issues. I have no issues to report.
When I went for my typical check up at my oncologist office a few weeks ago, I had the nagging thought to take a copy of the CT Scan with me, just to be a part of my medical file. When I told the nurse practitioner what was going on with it, she pulled my complete chart, reminded me that I was considered post menopausal, (oh I remember forced menopause, those hot flashes were horrid thank you very much), but felt it was best that we check my hormone levels to be safe. Ok, let’s draw MORE blood (but that’s another story).
Fast forward 1 week. I’m sitting at my desk about 2:00 pm on a Monday afternoon while at work, my cell phone rings and it’s my oncologist office, I let it go to voice mail, after all, I’m sure they are calling to tell me that my Vitamin D levels are still low and what we need to do. WRONG WRONG WRONG, do not pass go and be prepared to pay a stupid amount of money moving forward.
I went ahead and listened to the voice mail that was left. Imagine my shock when I hear that my estrogen levels are elevated and we need to talk, that I need to call back with the information of the place that ran the CT Scan, they want a copy of it, and will call me back later on to discuss my labs.
INSERT PANIC ATTACK
That voice mail invoked the same emotions that the call telling me that I had cancer did. I left my desk, called back with the information they requested, then quickly called Dr. W (gynecologist) to discuss. He told me that he would call Dr. O’s nurse to discuss, he called back, we talked a couple of more times. After we got home from work, the nurse practitioner called to go over my lab results with me. For being post menopausal, my estrogen level should be at 10 or less, my current level is 80! Holy BAD WORDS, EIGHTY?????? Freda (NP) told me that Dr. O wanted that remnant out, NOW. I can’t begin to tell you how I was feeling. Estrogen is super bad for me, super duper bad, like, oh so very bad. My cancer was 100% fed by estrogen, so, if ANY cancer cells survived surgery, chemo, radiation AND the hormone suppressors I’ve been taking, this new estrogen could be feeding the bastards and do damage. But…..wait….my latest labs are all clear, still no signs of cancer, so why am I in a panic? Cause I understand the magnitude of what this COULD mean for me, estrogen is as bad as Satan is. It can kill me.
Over the course of the next few days, I can’t even begin to tell you how many emails I exchanged with my oncology nurse, she was even able to work miracles and get my 2 doctor’s to talk to each other, not to nurses, or office staff, but to each other. They even came up with what they felt would be a suitable game plan moving forward to treat this remnant. My options are to either take a Lupron shot every 3 months for the next 5 years, or have it surgically removed, again. Let me tell you, that was an easy peasy decision for me – yank that sucker out. No way can I live in peace knowing this thing is still in me and capable of going rouge on me again. Did I mention that estrogen is involved and just how horrible it is for me? UGH!
I have made the decision to have ONE and only ONE Lupron shot, this will give me up to 3 months to find a gynecological oncologist to do the surgery, get it planned around life and work, come up with the deductible and save for the time that I’ll need to be off work. Oh, and let’s not forget that I have about a billion questions that need to be answered.
Back to the title “I thought I was done.” Well, I did. But clearly, this ovary thing changes e.v.e.r.y.t.h.i.n.g. I tried keeping my weight loss surgery quiet, wanting some privacy in my life after a very public journey with breast cancer, but, well, that didn’t work out the way I planned it. Then I wanted to keep this private as well, but my desire for more information related to ovarian remnant syndrome and breast cancer together outweighed my desire for privacy. The internet (or as I call it, Dr. Google) hasn’t been very helpful, neither have any of the top cancer websites. The women in my support group had never heard of this either, yea, me too. I want to find someone who has been through this, not that I need support, but I want to pick their brain’s over how it was discovered, were they also estrogen positive, how did they treat, how did their post cancer treatment change, etc…..If you know anyone who has dealt with this, send them my way.
it’s been a rough couple of weeks with the passing of our oldest pup, Chrissy, followed by the news that my ovary is back and trying to kill me. There’s been a lot to wrap my head around, but I woke up this morning, and for that, I’m very very thankful.
When I cross the finish line in 11 days at the Race for the Cure, it will hold a little extra meaning this time than it has in years past. Not only will it be the 4 year anniversary of the day I learned my mammogram was bad, it also signifies that I really don’t know what tricks my body will pull on me next.