RE: Surgery while being autistic with Ehlers-Danlos Syndrome and having a long list of past medical trauma.
I will say first and foremost - asking questions and disclosing my disabilities along with having a trustworthy support person who understands neurodiverse communication styles and advocates for your voice is so very important!
Content Warning: Breast Cancer, specifically Ductal Carcinoma in situ (Grade 1).
Proof of life! I made it through surgery!
I have so much blue dye in my body that I am peeing blue, my skin is blue and the arm where it was injected into is now very, very blue. This is very strange, but I understand what is happening.
I had the milk duct removed plus margins plus two lymph nodes.
It has been a VERY long day. I live in a rural community The surgery took place in a hospital that is an hour and a half from my home.
We arrived at the hospital at 8:30AM this morning and left around 5:30PMish. So much noise, smells, and people along with all the poking, prodding, having to remind staff repeatedly about my narcotics allergy and having to touch people I don't know just to be able to go to the bathroom. Having open communication and asking for clarification helped so much!!
My stimming was first confused for being too hot. Luckily, my support person understood my one word answer of "no". He responded with telling me that I was free to stim. I didn't have to defend or explain.
There was a very long wait time between prep and being moved into the surgical room. Yes, I was flapping. Then I ended up hitting my forehead, then chest. This was done in a controlled manner to not hurt myself. My anxiety was really high and stopping myself completely would have resulted in my bracing my body, which would have made things worse.
I am a complicated case - allergic to narcotics, Ehlers-Danlos Syndrome, struggled to get an IV in (blood vessels don't cooperate), internal body parts not where they are typically expected hence the extra blue dye trying to find my lymph nodes. The radioactive injection that was put in prior to surgery wasn't enough to map my lymph nodes, hence the blue dye that was injected into my arm that went all through my body.
This was my 5th surgery, first surgery for cancer.
I go back to the Oncologist on the 25th and will be started on Taxifolin for five years. I will be starting radiation in a few weeks after I recover somewhat. The radiation will be everyday for 2-4 weeks disrupting my routine and my work schedule.
I am starting an anti-anxiety medication in a few days (have to process the surgery meds first). My fight/flight response has been way too high for far too long and is impacting my health. My hope is that this anti-anxiety med will help me manage this routine disruption better.
I am having trouble breathing, which doesn't help my anxiety. I have what is called Atelectasis. Basically, alveolar collapse. Apparently, this was caused by a combination of the breathing tube I had in for hours and my sensitivity to opioids that were used during surgery.
My Ox sats were around 90-93 in the recovery room. I was given an albuterol nebulizer treatment, which helped. I was checked again and was at 97.
My Ox sats are going up and down. I need to keep my shoulders down (no bracing), and cough which is painful. I was given a device that I need to use 2-3 times a day to force the aveoli to open back up. This could be a week of this.
So, in the meantime time, I am feeling light headed from lack of oxygen and am at risk for pneumonia. I did have my viral pneumonia vaccine two weeks ago, but they are more worried about bacteria pneumonia. My husband has asthma and he is going to let me use his nebulizer as needed.
I have been a runner for over 30 years and typically have very strong lungs. Atelectasis sucks, but it is treatable.