Follow my unexpected cancer journey...the good, the bad, and the ugly!
I guess things are finally about to start. Next Tuesday is my birthday and the following Tuesday my month long Dallas fun begins. I'm happy I'm not there for my birthday, but missing Thanksgiving is a bummer.
T-Cell Retrieval day
Like I mentioned on Facebook last week, nothing really went as planned when we were in Dallas (surprise surprise). Thankfully, after my oncologist nurse was on the phone for hours and trying to get everything to work out time-wise we finally got it all done. However, to stay on the time schedule we had to drive to Waxahachie early Wednesday morning to get my catheter put in my neck (of course my arm veins weren't big enough and would have collapsed if used). Ya, you know what doesn't feel good?!...getting a catheter put into your neck....you know what could be worse?!....having them have to prep you, stick you with the huge needle and give you the worst numbing shot ever just to find that that particular side of your neck wasn't viable after they were already in so they then had to prep, shoot you with the worst medicine ever, then insert the huge needle on the other side of your neck....basically like having the surgery done twice. What could possibly make it any worse?!... having to say no to getting to have nice drugs to put me out and not feel anything because I couldn't stay longer to wait for the anesthesia to ware off and had to go straight back to Dallas to start the retrieval there...ya I got gipped on that deal. What was supposed to only be a less than 10 minute thing turned into over 30....my typical luck...and if you remember that is the same exact thing that happened when they put my port in and why I have a port incision scar on both sides now. What are the odds....
Because of timing my cells HAD to be collected wednesday to be flown to California or the lab couldn't take them till another week....ya, not happening. The retrieval process was pretty interesting I guess, but pretty uneventful and exciting. During the course of over 5 hours I laid there hooked up to this big machine that gradually throughout those 5 hours took out 12 liters of my blood, took the cells out needed, then returned the blood to me....this being why you have to have a big enough vein to do this procedure ie in your neck if you're one of the unlucky ones. Thankfully I'll get to use my port for harvesting day. It's pretty crazy everything they have to do legally and procedurally for this whole process. I took a few pictures, but basically after you are done the bag of blood that literally fits in your hand has to be signed of by x amount of people, a ton of paperwork done on it, a ton of things entering into the computer with another persons having to ok it and sign off as well. Then put into a big, very secure box packed with some contraption to keep it at the right temp and a machine that makes sure it stays at that temp until taken out. A carrier comes to the hospital to get the box, takes it straight to the airport and sends it to LAX where it is then signed for again off the plane and taken by carrier to the lab where its then signed by someone again. It makes you wonder how much just the whole shipping the cells part actually costs.....needless to say my cells have had more of a vacay than I have in years. Cells are received the same night of retrieval and literally started on that night. Supposedly, after 10 or so days they know or can tell how its going, if the cells are going to work, and if they will be on schedule to come back for harvesting. Meanwhile we wait. If they are trained ninjas on the current timeline, I will be headed to Houston in 2 weeks (the 30th) and there for several weeks, specifically in the hospital for another lovely stay of a minimum of 7 days then depending on my symptoms and neurotoxicity either released to stay close to the hospital or having to stay longer for observation.
I've obviously been asked a million times what exactly Car-t is and how do they "train" my cells....ya, no clue how to ever answer that question but if you for some odd reason like medical talk and medical terms the below link is just for you ; )
Negative Nancy? No, More Realistic Rita
You always hear, "don't judge a book by its cover"...this phrase has become more and more descriptive of my life over the last year and a half. For instance, I may not of always looked sick on the outside, but burning rage was having a party on the inside whether it be the cancer or my emotional state. From the outside looking in, seeing the baking classes I've been going to, movies, and massages you would think I'd be living the life....when in fact I'm just trying to do anything to attempt to keep my mind of things on top of not being stuck in the house. Plus, if the tumor didn't kill my back so much I wouldn't have to have massages to attempt to lessen the daily excruciating pain. After not being able to work for....way too long....you have to think of anything to keep you sane.
Ironically, a phrase keeps coming up in my counseling sessions that makes me think of the book cover reference, "I don't want to live, but I don't want to die". Now most people might see from the outside looking in that if the car-t works I'll be fine and dandy, when in fact you couldnt be further from the truth. You say Negative Nancy, I say Realistic Rita and heres why, cancer literally takes your entire life away:
~trying to get a job with cancer or after having cancer is basically an olympic sport and ridiculously hard no matter what my experience is and degrees I have
~your body will never be the same on the inside OR the outside
~your dreams of having a family go out the window (1- bc of the maybe 1% chance I even am still fertile after all these chemos, radiations, and procedures but also 2- who wants to be with a bald person that looks far from what they used to...tiger stripes and cancer weight galore not to mention the emotional side of it
~the world revolves around money....I was already going to be paying off my undergrad and masters loans till I died, now throw in cancer costs and you're pretty much in a hole you can't dig out of
~it also takes money to afford a place to live again...who knows how long that will take
~if and when you finally get a job, who knows if your body will be able to keep up since financially you'll obviously be going back sooner than you should physically
~every time I get sick the first thing you think is cancer...not to mention the likelihood of the chance of getting another type of cancer is high and even if car-t does work the likelihood of it lasting long is doubtful. Yes, I've read several people who are still in complete remission after, but there are still half that it either didn't work to begin with or only lasted 3 months to maybe a year....then you basically start all the way over (who wants to do that?)
So when I say its the beginning to the end, it literally is for me, its hopefully the end of cancer and the beginning to attempt to get somewhat of my life back, but I have to be Realistic Rita. I've heard cancer survivors say many times that people think everything just goes back to normal after cancer, when in fact you will never have a normal again...you just have to make your own new "normal".
I found out last Friday that everything had finally gone through with my insurance, the oncologist, and the hospital...it only took how many months?! I am scheduled to be in Dallas next week:
Monday- meeting with my oncologist the last time before starting and getting a vein check
Tuesday- Line placement day...not so fun! Monday they will be looking for basically a substantial part of my body they can go thru with the IV to get a strong vein that can withstand the procedure. Honestly, most people I have talked to or read about have had this done in their neck...definitely not looking forward to that...but at least its only in for a day regardless.
Wednesday- I have to be at the hospital at 7am to do my t-cell retrieval...goodbye millions of cells
These will then be frozen, shipped to California, and taught karate and kung foo fighting. Apparently around 17 business days they hit black belt status and are then sent back to my hospital. I'm assuming this will be around Oct. 29th-ish. When they come back I will start my 3 days of intensive chemo to completely wipe out my body so when the newly trained cells are put back in me they have free reign with a blank slate to hopefully work their magic. Yes, this means I will more than likely lose my hair for a 3rd time (or at least the little thats grown back since March).
After the 3 days of chemo and the cells being put back in me is when the real "fun" starts which I will wait and blog about later. Let's just say it won't be all unicorns and rainbows and this whole procedure brings the opportunity for a long list of side effects. Because the side effects can be so bad, specifically neurologically, I have to stay in Dallas for a month to be close when something happens and I have to go back in. Just the risks you have to take to stay alive these days apparently! So far, this CAR-T procedure has had a 50% success rate...so fingers crossed I will for once in my life get some good luck vs my life long string of bad.
^^^^^^^The true definition to cancer ^^^^^^^
So, it looks like I will thankfully not be in the hospital and/or Dallas for my birthday as I originally thought (one benefit to the long approval wait) but I will probably be there for Thanksgiving. I have a mountain of stockings I'll be sewing to hopefully keep me from going even more crazy...if that's even possible at this point.
"You either get bitter or you get better. It's that simple. You either take what's been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you."