I’m a Hyster-Sister

Last Friday, the 20th, finally came and I was ready! I checked in at the surgical desk a couple minutes early and a nurse came to get me a few minutes later. I had no nerves, no fear, no second thoughts. If I could have undergone a hysterectomy four months earlier, I would have. In the pre-op room, the nurse had me change into a hospital gown and nonslip socks and then sent me for a urine sample to make sure I’m not pregnant… She covered me with warm blankets before getting the IV started and then she took samples of my blood to check my kidney function and blood counts.

The surgery before me took longer than expected, which pushed my surgery back by almost 2 hours so I sent a quick text to a couple of people to let them know we were delayed. Dr. A came in to see me, as well as her assisting physician, resident physician, and the anesthesiologist. All were friendly, positive, and attentive. In fact, every single person I encountered at the hospital was personable, caring, and kind. When it was time to go, a nurse pushed my pre-op bed down a maze of halls and into the destination operating room where I moved from one bed to the other. The anesthesiologist asked me to lay back where he gave me an oxygen mask and said he was about to give me the “I don’t care medicine”.  And that was it! I woke up several hours later in the recovery room.

I asked the nurse in the recovery room how the surgery went and she assured me it all went well. I stayed still just listening with my eyes closed until they wheeled me to my room where I’d spend the night. I went from feeling alert’ish to asleep’ish to somewhere in between. I don’t remember much except that my bottom lip hurt, my throat felt phlegmy and dry, and when I opened my eyes I seemed to see two of everything. But I wasn’t that uncomfortable. For dinner I ordered chicken noodle soup and crackers because you can never really go wrong there. My nurse had me take a walk down the hall, which was tricky. I felt fine starting off but quickly felt weak and a little light headed. Afterwards, she decided it was time to take my catheter out, which is never really pleasant, but at least it’s a step in the right direction.

For as often as the nurses woke me up during the night to take my vital signs, I felt rested in the morning. I got up several times to use the bathroom so they knew I was well hydrated. My only problem was my blood pressure, which refused to go higher than 80/50, but the doctor said that since my pulse rate was normal, they’d go ahead and discharge me.

I was home by 11am on Saturday, tired but happy to have it all behind me. By Sunday I was really sore but doing my best to get up from time to time to walk the house. Monday I decided the Percocet was too much so I decided to stop taking it. Percocet makes me feel fuzzy, it makes my blood pressure stay low, and it causes constipation so I decided it might be worth a little discomfort to not feel so “blah”. I also dropped the Ibuprofen because I worry about the demand it puts on my liver and kidneys but when a fever started creeping up, I went right back on it. That night I slept 12 hours. Yesterday (Tuesday) was a pretty good day. I dropped my dosage of Ibuprofen to 400mg every 4-6 hours. This morning (Wednesday) is day 5 post op and besides feeling a little pressure in the abdomen and the skin is a little sensitive, like it’s been bruised, I don’t really have pain.

Speaking of pain, I want to bring something up. I’m not one who runs to a pill every time I feel the slightest pain. In fact, my first thought is to drink more water or to adjust my nutrition. Going into surgery is different though. I knew I’d have to have help managing the pain but I was afraid of side effects and of course, how it would affect other organs. So, I did a little investigating. There’s quite a bit of misinformation about medical/recreational marijuana but as with any drug, it has it’s benefits. I wasn’t interested in smoking a joint or anything like that but I was very concerned about nausea after surgery or sleeplessness due to pain.  So I talked to a friend who schooled me in the world of Cannabis. Based on what I learned, I went to a dispensary (it’s sold legally in Colorado) where another friend of mine works and she was able to point me in the right direction. I bought a vape pen, hash oils (CBD for pain and THC for nausea) and some patches, that last for 12 hours. The nice thing about a vape pen is that it is unable to give you more than one dose at a time so for someone like me, who doesn’t smoke weed, it’s a good thing so I don’t over do it. The patches are completely odorless and effective. I used both of the patches and have only needed the vape pen once but I love having the option of going to something other than a narcotic (Percocet) to alleviate pain or discomfort, especially without the side effects like constipation or stress to other organs. It’s all about choices, really!!

At this point, I’m ready to move on with my life for a while. I know fully that breast cancer is my higher risk but I’m not ready to walk down the Double Mastectomy Road just yet. My labs from the hysterectomy came back benign so I’ll relish in that for a few minutes.

Dismissiveness

I toy with the idea of just being quiet about this whole discovery of testing positive for the BRCA2 gene mutation. It wouldn’t be hard for me. I’m not one who likes to spend my time talking. But I also like to think I’m pretty honest with people — transparent — so that the real me will be what they see. This whole BRCA thing is a big deal to me and it should be because it is a BIG deal.

It’s happened a few of times… I share my story — because, after all, it’s what’s on my mind these days — and here’s examples of the responses I get:

• “Have you ever actually talked to someone who’s had a hysterectomy? It sucks.” (as though I live under a rock)
• “You need to buy a juicer and switch to an alkaline diet.” (as he eats a pepperoni pizza)
• Just get screened for ovarian cancer — when was the last time you had a pap smear?” (<— this one is laughable, except that it’s not funny)

It must be nice to live in such ignorant bliss, really. For me it would be dangerous. I haven’t even started to seriously consider a double mastectomy so I can’t wait to hear the feedback if that should ever come up. I’ve heard from other ladies that comments from the peanut gallery include, “well, at least you can get a boob job.” Good grief.

I suppose it’s a good thing that the comment of getting screened for ovarian cancer comes up because I can do my best to convince ladies that that’s not something science has figured out yet. A pap smear screens for cervical cancer and can detect HPV (Human Papillomavirus), which causes something like 70% of cervical cancers, but it doesn’t detect ovarian cancer, not remotely. There’s a test called CA125 that’s supposed  to be a way to “screen” for ovarian cancer. The problem is that this test often results in false positives or returns normal ranges even when cancer is present. I don’t like this. Ovarian cancer is called the “silent killer” for a reason. And then there’s the invasive intravaginal ultrasound method of screening. This, again can result in false negatives/positives. So, if nothing else, at least the dialogue might encourage my friend to take a peek at her family history so she can determine (along with her doctor or a geneticist) whether or not she’s at a higher risk for a harmful gene mutation and therefore, a higher risk for developing certain cancers, like breast or ovarian.

The suggestion that having a hysterectomy is going to suck and therefore, I should steer clear of that preventative procedure, is probably someone just looking out for me. I get it. I’m sure it will suck. But you know, if I choose to go the route of “screening” for ovarian cancer, as mentioned above, I am positive that for the rest of my life I’ll be worrying about how science is coming along with perfecting these screening methods because right now, today, they are unacceptable methods of screening for the silent killer.

Finally, I saw red when this man I know said, “You need to buy a juicer and switch to an alkaline diet” and he went on to say, “cancer can’t grow in an alkaline environment”. I’m pretty sure he had a grease spot on his shirt from the pepperoni that fell from his pizza as he told me to adjust my diet if I don’t want to get cancer. He also happens to sell juicers. It’s the victim-blaming that bothers me the most. Or maybe it’s the dismissiveness that bothers me the most. Either way, this type of comment practically incites a violent response from me. Some people really are just that ready to share advice with you regardless of how little they know. It’s like they can hear themselves talking and they think they sound smart so they just keep on trucking through the information that you are obviously (in their mind) craving. I’m not saying he’s wrong in suggesting a healthy diet; I’m saying it’s annoying that he assumes I don’t eat a healthy diet. Mostly it’s annoying that this one has never heard of the BRCA2 gene mutation but he’s doling out cancer prevention advice (while eating a pepperoni pizza). I don’t have cancer but I don’t buy into the notion that regardless of my hereditary factors, nutrition alone can keep me safe from cancer. I’ve done a lot of reading on this topic so I have to listen to my gut here.

I could opt out of discussing this with anyone, but then I feel like I’d be living a secret life. I think when people tell me bad news I just offer them empathy and if I mean it, I invite them to ask for help if they want/need it from me. It’s weird that I can’t expect that from certain people in my world. Going forward, I’ll have to wisen up and only discuss BRCA2 related topics with people from whom I can expect empathy and appropriate, nondismissive, and well-informed responses.