Update: these new chemo drugs haven’t been too bad. To start with, I was on drugs called A/C which is also known as the red devil because it makes you feel pretty crappy. Gone are the days that I have to endure that pain ever again, YAY! I am now on 2 drugs called Carboplatin (a platinum drug used to prevent Ovarian cancer for me as I have BRCA1 gene) and Taxol another breast cancer drug which is super easy to handle 🙏🏼
Crappiness still ensued 2 days after my first round though, I woke up and was going about my normal routine and dropped to the floor and had a seizure. These seizures to me are quite traumatising in the sense that I have no clue what the hell is going on until maybe 15 minutes later. For me there are no warning signs, I just wake up with a sore head feeling confused and short of breath, trying to piece together what happened. My poor partner whom I am so lucky to have, has been there for every seizure I have ever had and although he is a shining light in my life, it kills me that he has to watch me go through it, especially while it happens it does appear as though the light is leaving me and I’ll be left doomed. Situations like this make me feel so helpless because there is nothing I can do (other than take my medication) to prevent this experience and it scares me that something as simple as falling and bumping my head could mean my demise. But we just get on with life even when we are faced with the crappiest of cards because how else do we go on? I know that once I have finished treatment I’ll be able to look after myself so much better, which means less seizures, less pain and more healing. Right now though, I’m a pawn to circumstances which I have very little control over. Funnily enough though, the worst pain I’ve endured thus far has been a sore butthole and I wouldn’t wish that pain upon my worst enemy! So; here’s to good health, no pain and gratitude for the little things. Because take it from me: considering it all - life is damn GOOD 🙏🏼 ...
From Boo’s view:
Am going to the Apple Store! Will let you know how they taste! Lots of healthy treatos comin! 🍏🍎
PUPDATE: the Apple store does not have real apples. Is all a trick. Try to contain your disappointment. Such heckery. ...
Vaccine science has become the new tobacco science. A message to pediatricians from Dr. Paul Thomas.
To watch the whole video, please visit the High Wire with Del Bigtree’s Facebook page or YouTube channel, search for video: “Secret to shutting up Antivaxxers” ...
I'm happy to say that I've gone 12 hours without a seizure! 🎉 I spent the night in the hospital and will continue to stay here with lots of medications to stop the seizures from coming. I have an MRI scheduled and EEG test. I'm exhausted, tired and sore. I hope to be home soon but your messages and well wishes are keep my spirits up so THANK YOU! 😘 Here's to no more seizures and that my new medication works! 🎉
Funny enough, the only thing Boo showed any indication of fear around on our trip was the water fountain in Downtown Disney. Each day we got a little bit closer to the fountain. This was our last training session of the day, and she was able to sit calmly and focus on me right next to it. Of course it wasn’t the crowds, or the music, or the loud noises that she was weary of. It was the obscure fountain in the corner. 😂
She truly is a Disney dog! 💙 ...
When is enough enough?
This week is so overwhelming. IVIG reaction, ER visit, continual blinding migraine and spinal pain with no pain management, and then last night, a shoulder dislocation on a surgically repaired shoulder, a seizure from pain, and intense breathing issues. I feel completely destroyed and emotionally fragile.
I saw my PCP today and he just walked into the room and stood there staring at me with no words. We discussed pain management and pretty much every option is contraindicated to me and my other issues. His only option is still IV Tylenol, which was vehemently vetoed by my POTS doctor. We decided it wouldn’t kill me for the two months it takes to see the pain specialist. One of those lesser of two evils situations.
He checked out my shoulder and was like yep that’s been dislocated... just don’t use it and hopefully it will heal. I’m hoping my PT can help more on Thursday.
My PCP pretty much just said he’s out of ideas. I asked him if I found a spine specialist if he would give me a referral and he said of course.
Last of all, I’m on line infection watch for the next few days because my port is incredibly red and I have some white head type rash under and around my dressing, as well as a fever. He said I wasn’t at the point of an Er and cultures trip yet, but to keep an eye on it.
Needless to say, I’m just overtired and so over my body and my life.
Also, I appreciate everyones love and support, but I am NOT looking for suggestions or advice. We had a very long discussion about many, many options, but all of them were vetoed because of my complex conditions. I will not be replying or engaging with suggestions and negative comments about my doctor. He is one of the most caring doctors I’ve ever seen and is really trying extremely hard to help me. Thank you!