A couple years ago, I was diagnosed with multi-centric IDC breast cancer, and, because of my family history, I was genetically tested, and I have the BRCA2 mutation. I had lumpectomy with sentinel node biopsy (clear), double mastectomy with immediate reconstruction, tissue expander exchange, and chemo. Having waited my entire life for the diagnosis due to my extensive family history, my attitude toward the diagnosis was, "Finally! Now, lets get this over with!" My husband said I treated that year of my life like I had a very bad cold. I was inpatient for less than 24 hours for the first 3 surgeries, and, while going through chemo, I didn't miss a day of work.
My only disappointment was that I felt my boobs could have been a bit bigger (LOL) because I was barely an A-cup prior to my diagnosis, and part of my pectoral muscle on the affected side had to be removed for clean margins, so I have what I term "a crater," an indentation, at the top of the affected breast above the implant.
Then came the suggestion that I have a total vaginal hysterectomy with bilateral salpingo-oopherectomy to reduce my risk of ovarian cancer due to my genetic mutation and risk of uterine cancer due to the carcinogenic properties of one of my chemo drugs. My female oncologist, who also has a genetic mutation, had already undergone her TVH-BSO by the time she had suggested it to me, and she made no mention of the side effects of the procedure.
My period had stopped shortly after my first chemo infusion, and I was started on Tamoxifen after chemo ended. I had a few mild hot flashes, but that was really it. My energy level was good, and I didn't think much of the final surgery. Once my breasts had completely healed after an in-office reconstruction of my nipples through a simple flap procedure and tattooing of my aureolas, I thought, ok, ready for the TVH-BSO.
Pit was the worst decision of my life.
Because it was a vaginal removal, I felt great after the surgery, and I was discharged less than 24 hours after walking in as an outpatient. No bleeding, no pain, peeing fine, out I go.
The trouble started--or at least I began noticing the trouble--about six months ago.
I have gained 20 pounds in a year without a change in my eating habits or activity. My hot flashes are nearly debilitating. I have had patients look at me with concern as sweat drips off my forehead, and I attempt to laugh it off without giving information. In isolation rooms, it's even worse, and I sometimes feel lightheaded and like I'm on fire! I am on 800 IUs of vitamin E and extended release Lexapro for hot flashes.
Every joint south of my waist screams when I get up in the morning and after getting up from a charting session at work. I have been diagnosed with chronic posterior tibial tendinitis and a talar dome lesion in my left ankle that prevents me from being able to do weight-bearing plantarflexion and running. I have to wear high tops and a sole insert while at work to keep from limping. I had a Dexascan, and I have osteopenia. My calcium levels are fine, but it's obviously being leached from my bones. We are struggling with getting my D3 levels up, and I am now on a once-a-week prescription for 50,000 IUs of ergocalciferol and daily calcium supplements.
My vagina. Oh, my vagina, how you betray me! I took a look with a mirror, and I self-diagnosed with Dr. Google that I have vaginal vault prolapse. Because of the appearance--and despite the fact that I have one of the most loving and supportive husbands who was ever created and who is yearning for me--I refuse oral sex out of embarrassment. Speaking of sex....who needs it! I have no libido, no lubrication, and mild-to-moderate dyspareunia. Orgasms are difficult-to-impossible to achieve and more than one attempted lovemaking session has ended with me crying in my perfect husband's comforting arms.
Emotionally, I have become a little distant, as my husband has told me with pleading, loving eyes. There are times where I daydream of a deserted island with a good book and an iPod or hope I am scheduled for work on the day of a planned get-together.
Lets not talk about sneezing or coughing and peeing a little at the same time!
I am fatigued. Fatigued beyond belief. Drag myself off the couch fatigued. Not sleepy, just achy-bone tired. It takes all my energy to do laundry in a 3-level house. What's more concerning is the more frequent palpitations and unexplained shortness of breath I feel. My kids say, "Mom, are you out of breath? Let me carry that for you." The ones I've been charged to protect are now protecting me.
During my last oncology appointment, all I did was cry and talk about my post-hysterectomy symptoms. Because I can't have hormone replacement, there's really nothing more that can be done!
Ok, I'm done. I am unashamedly writing this because I do need a pat on the back, a cyber-hug, and some practical advice. And I end this post with tears of frustration running down my face. Thank you in advance. Just thank you.