I had my car-t infusion November 5th. Thankfully, it went much smoother than I was preparing myself for...but of course, I wasn't exempt from a few issues. I didnt start to have any side effects until a few days in which consisted of the typical fever, nausea, no taste, and always tired. I had a few instances of neuro fun but nothing compared to what I went thru a few months ago. I also, thankfully, didn't have any seizures or go into a coma so cant complain too much! However, being the first person having Yescarta (car-t) to have the crazy swelling issue was far from fun....or attractive.....but being the first person in Austin to have car-t is neat, I guess (if it works). My Austin oncologist is learning while going thru it with me as well...yaaa for being a guinea pig.
After being in the hospital for 2 weeks (mandatory length stay after the procedure) I was allowed to go stay in the transplant patient apartments Baylor has right by the hospital called, "Twice Blessed". It was so much nicer to be out of a hospital bed and not connected to iv's and a pole all day and night. However, our apartment was right across the street from the fire station and right next to the bus stop (of a very interesting part of Dallas) so we "got" to listen to sirens and talking almost all day...but still cant complain since these apartments were a fraction of the price a hotel would've been had we not been able to get into them. During the apartment stay I still had to go into my Dallas oncologist every other day to do labs and check my neuro state etc...I never believe how much blood one body has...I surely thought at some point I was going to run dry. I can't even remember how many times I was poked....not to mention they couldn't get my blood to draw multiple times so they re-stuck me....and re-stuck me...and put lines in that then failed....so re-stuck me again to put a midline in my arm...which then also quit working so I got stuck again....well you get the point. The nurses also had a hard time accessing my port...I was poked a couple times and it didn't work so they kept bringing in different people...it was ridiculous. The biggest issue I had was the nausea (but thankfully medicine usually worked) and the constant hot/cold sweating (you're never comfortable)...and that's much better than having seizures any day. Since I wasn't having any severe side effects my dr thankfully discharged me a few days early so we got to come home before December....even though missing Thanksgiving food and family sucked.
I couldn't wait to get home to Brodie...and my bed!
Now that I'm finally back in Austin, I still have to go once a week to my oncologist here to get labs drawn etc. In addition, I have to come once a month to get IVIG, which is an infusion that basically helps my immune system start to get stronger again, but that should only be for a few months.
People keep asking me if I feel different or if I feel like it's working etc. No. I feel the exact same way I did before car-t. I literally wont know if the procedure worked/is working until my first PET scan that's 3 months after infusion (so February). So nothings really changed except I'm tired 24/7 and some days literally have a hard time keeping my eyes open...but I know that's just part of it and will gradually get better. I'm just glad I get to sit and watch Hallmark movies surrounded by Christmas : )
My plan for the future:
~ If the Car-T worked then I will thankfully get to go back to work for next school year (although I will probably try to do something to bridge that gap for financial and sanity sake). I literally CAN NOT wait to get back into the classroom. Then of course attempt to rebuild my life one piece at a time.....a long road daunting road
~ If the Car-T didn't work, I'm done. I'm done in the sense that I literally have undergone all the chemo, radiation, medicine, and procedures available and none worked. And done in the sense that even if there was another chemo in trial etc I would say no. I refuse to go thru being connected to an iv for days and days for chemo again. I cant do the "in the middle" life anymore. When you cant work, cant go out, cant make money, feel crappy, have dr appts constantly etc...that's just not a life. I either want to begin starting over or be done...and I'm fine with that (after a while you come to terms with dying).
Until then I will just have "scanxiety" waiting for my PET scan in February.
~Yes, my hair is still coming out as you can see in the pictures
GO DONATE....ANYTHING....PLASMA, BLOOD, ORGANS.....you'll literally help someone stay alive. Found out I can't donate anything...ever....because of having cancer : /
I did a thing.....or two
This is what I do these days...