Warning, this post contains post surgical photos which may make people upset or queasy.
6 years ago, I went in for my annual pap smear and mammogram. You know, the usual dreaded female appointment. I had been cancer free from my previous bone cancer for 13 years so I was feeling pretty damn good. We had just moved from Kansas to Connecticut and were so excited to start a new chapter in our lives. I received a phone call from my doctor saying she’d like to see me back in for an ultrasound. I have had this happen before because I had fibrous breast tissue so it was difficult to see suspicious things on the film sometimes. I went in thinking, no biggie, been there done that. Well not this time. Apparently I had multiple calcium spots showing up in my left breast. She recommended a biopsy next. This I had never done, and I did not realize how painful it would be. They strap you in to this contraption laying on your stomach with your boob poking through a hole while they stick a large needle in to numb it and then extract a piece of tissue. Then they mark it with a BB so it shows up on X-ray later.
Two days later the results were in. I wasn’t even nervous, how strange is that? I was diagnosed with Stage 0 DCIS (ductal carcinoma in situ). This is a non invasive cancer where abnormal cells have been found in the milk ducts. It had not spread outside the ducts into other tissue. I was grateful for that, but now I was terrified. Here we go again, I just knew the bottom was going to drop out eventually. I mean, I still had a bit of survivor’s guilt because so many other people die of the Osteosarcoma that I beat. It was only in my left breast but I knew in my heart someday it would show up in my right one as well. I told my doctor that I wanted both of them removed, I was not taking any chances on it reoccurring. And I refuse to have mammograms every year constantly waiting for the bad news to arrive someday. I had the BRCA gene test which was negative so I knew it wasn’t a genetic mutation my girls were going to get. I was super grateful for that! And the best news was that I didn’t have to do radiation or chemotherapy. Not that I would have anyway, I honestly couldn’t go through that again. I was offered a bilateral mastectomy with reconstruction and made an appointment with a plastic surgeon who would explain my choices. He said there were saline, silicone and gummy bear implants which were supposed to be the latest and greatest, touted as keeping their shape even if they were ruptured. My PS even stomped on them to show me how tough they were. He said you can even run them over with a car and they will be fine. So after careful consideration, debating if I should even get implants at all I chose to set my date for the mastectomy with reconstruction all in the same day. After all, I wanted to still look like a woman in my clothes.
During surgery they remove all of your breast tissue, and in my case 2 lymph nodes to test. They also removed my nipples. Then they implant expanders to stretch the very tight skin. Every couple of weeks I would go in and have more fluid injected into them to stretch the skin until I was approximately a size C (about 550 CC). When you are the size you want then you go back in to surgery to swap out the expanders for the implants. I went home with painkillers and a pain pump in my chest. We literally had just moved in to our new house and the moving truck came a couple of days later. I so wanted to help with the arranging of furniture and opening boxes. Well, I wanted perky boobs and boy did I get them. They were hard as a rock, they didn’t move with me. They were in the way when I tried to sleep, or do anything that involved moving my arms. They were also cold as hell. No blood supply, no nerves left. They were numb. Not at all what I expected. But I got on with life. Grateful to be alive and done with all of it.
About a year later I started noticing strange things. I knew I was heading into menopause but I was having about 20 hot flashes a day. I’d get out of bed and my feet hurt so bad, they felt like they were breaking. It took me a minute to be able to walk and then I walked like I was 90 years old. I had gained about 20 pounds and had done nothing differently with my eating. My neck and shoulders hurt constantly, even though I saw the chiropractor twice a month. I figured well this is what menopause is like, a living hell. I was starting to get depressed, feeling like I had no energy, I just wanted to stay home all of the time. It was all I could do to just go to the grocery store. Life was passing me by and I could care less. Then in the next few years more symptoms popped up. Suddenly I couldn’t remember things, the names of simple things like pan or shoes. My brain was so foggy I could not concentrate. I stopped reading, I didn’t want to socialize because I felt like I couldn’t carry on a coherent conversation. My husband would ask me to do something and I would have to write it down or put it on my calendar because I would not remember to do it. Most mornings I had very hard time getting out of bed. I had a constant runny nose so I went to the allergist and was tested. I had suddenly developed an allergy to dogs. I have had dogs my entire life. I have 4 right now. The newest and one of the worst symptoms was when my lips swelled up, got extremely red and tender, burned and exploded in sores, then peeled off. This went almost to my nose and down below my bottom lip. It would last about two weeks and was very painful. It came and went for over a year. This was the last straw for me, I couldn’t live like this any longer. I accidentally came across a Facebook page call Breast Implant Illness and Healing By Nicole. This page which had already accumulated 47,000 women (and some men) changed my life! That number is now up to 71,000 today.
Thanks to the support of Nicole and the rest of these people going through similar things I knew I wasn’t alone and I wasn’t crazy! I started the search for answers on how to get these toxic bags out of my body. It wasn’t an easy or a quick process and I wasn’t sure if our insurance would even cover the procedure. I found a plastic surgeon at Yale to do the procedure the proper way (total enbloc capsulectomy) and he said he would make sure that my insurance would cover it. But first I had to see a Neuropsychologist to make sure my memory problems were not from Alzheimer’s, and a Rheumatologist to see if I had arthritis. Both of these testings showed nothing. Plus I had a full blood panel done, which once again showed absolutely nothing was wrong physically.
To be continued in BII, part 2…..
