These are so hard to keep short and sweet. On one hand I want you to come read the cliffs notes and go with your info...but on the other hand If I didn't say what i want to say or explain things it kinda of defeats the whole purpose of why I started this blog in the first place. When I got diagnosed the first thing I did was obviously my own research....for hours. I realized not many people shared their entire story (trust me, it's not at the top of my list by any means). I didn't actually visually see what I could look like (more than just physically), and I'm the type of person that wants to know everything to feel more calm or understanding. After searching the internet for several more weeks I just decided if just one more teacher, or one more young adult my age gets this, they aren't alone, because let me tell you, alone is all you feel.
Things sure do change within the blink of an eye. Some pictures are during the time the second type of chemo wasn't working, I got to check in then. We then quit the remaining chemo sessions we had left and then started immunotherapy, i would be on Keytruda specifically.
Now for the next round of fun: immunotherapy. This was supposed to be smooth sailing and I'd be done in just a few weeks then only have to come once every 4 weeks because the success rate was so high. Well we started week 1 of Keytruda, wasn't bad until a few days in and then it was almost embarrassing how bad I hurt. I finished my second round and almost immediately the next day thought I was dying, and I don't say that to have a pity party or lightly etc, but just to give you a literal and realistic glimpse. I couldn't breath, nothing, gasping for which then feels like eternity and just starts the anxiety attacks, night sweats yet again but much worse (if even dreamed possible), chest pain the worst I've ever had. Basically, the Keytruda was killing me even though it was helping my tumors (they shrank a little). I was part of that wonderful .01 percentage again that this rare case could happen.
Now all my levels were screwed up yet again and I ended back in the ER for a week. while there the number one goal was breathing......well and to stay alive obviously. It was beyond hard to breath, or do much of anything. i had a catheter because I couldn't leave my bed. After 4 or 5 days I finally got myself to the chair next to my bed, this was big news guys! On that note, its never been so hard to move in my life! I feel like being bedridden for so long I instantly lost any leg strength...which worried me.
After multiple doctors worried about letting me go when my numbers still weren't where they should be, I got to go and promise I'd work everyday to continue to move foreward.
So for the last bit of interesting news, but by far the biggest thing since sliced bread....or at least since I was born. Since so many different types of cancer fighting drugs didn't work, along with obviously many other qualifications, I found out about a a immuno trial that had just got FDA approved only within the last few months....IE they still have no data on it. This is the CAR-T thats $400,000. I was initially supposed to do it at MD, but that was a ridiculous insurance show and they said they didn't take my insurance anymore.....huh? There is only one other hospital in Texas that does this since its so new etc, so I will now be in Dallas....pretty much all summer. There is obviously a lot more I didn't get to but I think you have a good enough grasp on whats been going on now since it changes daily and lots of people have been texting and asking since I have been a blog slacker! Now to just wait on insurance and then get the ball rolling....hopefully all in time.....sooner rather than later.