"I Don't Know"
Originally published at bcvsbc.blogspot.com on 01/31/19
If there is one common theme in my life it is that I am a bit of an odd ball in the medical field that gets unusual side effects from medicine. Really this is not a joke or being sarcastic. Check this out...
1. At 11 we discovered I had a bleeding disorder. It was genetic. Neither of my parents have it (Yes they are my biological parents I've done 23 and me, ha!).
2. After the birth of my last child the bleeding disorder disappeared but knew symptoms popped up
and led to the discovery of my having PCOS. My endocrinologist was baffled that I had 3 children. (I filled out a lot of research studies after this).
3. I got breast cancer at a young age and have no genetic link. (Common misconception is that breast cancer is predominantly genetic, it isn't, however under 40 it does account for a majority of the cases.)
4. While on hard chemo I had odd side effects that my ONC would say she had never seen before in a breast cancer patient on that specific chemo regimen.
So why I am still surprised when another doctor tells me they don't know what is causing something to happen to my body!?
I am just accepting that I will have diarrhea till I am done with chemo. Fine. I can stay in my house and near the toilet till the end of May. Annoying? Yes, but let the drugs do their job so hopefully I am only in this position once. Do I wish that the constant bathroom breaks would be giving me a svelter figure? You bet your ass I do, but some how this is NOT happening. All I can say is, LAME!
One thing I am not willing to accept is the acne rash. It is back and horrible on my chest but all over my chin too.
How can I explain how utterly devastating it is to wake up and look in the mirror at a person that is so hideously ugly. Before anyone sends me a message to tell me I am beautiful please image all of this happening to you...
I've lost my breasts.
I've lost my hair.
I've lost my eyelashes.
I've lost my nose hair (something I never thought I would be upset by but I am and I desperately want them back).
I've gained over 20 pounds.
I am grateful to be alive. Heaven knows I am...BUT I also don't know who the person is in the mirror. I can't accept that when this is all over my face and chest is going to be covered in acne or scars from this rash that has taken over my body. I feel as if I am mourning the outer beauty I once had. And let's be totally honest here I wasn't some drop dead super model, my personality it really what makes this package, but I wasn't a total dog.
My eyes are nice, but without eyelashes they scare me (I wear fake ones now). My face is decent but not with the acne rash covering it or the scars and discoloration that will be left after it goes. My hair, oh how I miss my hair. It is slowly growing but all that has done is make me look more like a teenage boy. I think the only thing going for me right now is that I do have boobs...that are 100% fake. So the best part of me visually is not even me. That sucks.
It seems like I should be able to fix the things bothering me which is why I am irritated that I can't find a doctor able to tell me why I am getting this acne rash. Just another reason for people to look at me and go through this list of questions in their head:
1. Is that a teenage boy?
2. Is that a young man?
3. Is that a woman transitioning to a man?
4. Is that a man transitioning to a woman?
5. Is it just a very masculine looking lesbian?
I don't care if someone is any of the above and I will tell you I have so much more empathy for people in the transgender and homosexual community because people really look at them differently. I am just a woman with cancer. There were a few months when I was totally bald that I could tell people understood it was cancer because you get the pity look. Yet once that hair started to sprout in it is just utter confusion on peoples faced and I just want to slap them.
Mainly I want to look like me and I fear that when all the treatment is done I am going to have to re-evaluate who the person in the mirror is again. Back to the reason for this post, the rash. I was able to get into see a dermatologist this week. He looked at me, pictures of me, asked about all my treatment and medicines, spent half an hour researching my chemo meds and then decided he really isn't sure what it is. The decision is to try a few different avenues. First, we are switching my allergy pill to see if this will help if it is an allergic reaction. Second, we are increasing the antibiotic I am taking for the acne so it covers if it is just rando acne that has suddenly decided I need. Third, we are trying out a different topical cream in case it is something developing from all my skin changes due to chemo.
Is this working? It has been two days so far and the answer is no. As with most things it is going to get worse before it gets better according to the doc. Let's just all cross our fingers it doesn't.
Last night I told Scott I am going to have to save up money to have some sort of facial to get rid of all the scars and discoloration when this over. Cancer ages you. Well, it is aging me. The stress, the medicine, everything takes a toll on you in ways I think I am still struggling to comprehend. I am grateful to be alive, I know that this is not always the outcome, but I also want to figure out how to get back to being a version of the person that I used to be. That is the real struggle these days.