Just Getting The Hang of It

Part IX

So here we are back at CHOC which was supposed to be the plan anyways, but it happened sooner than planned and unfortunately not under the wanted circumstances. Dr. Huyhn was upfront about everything. Just how I like it. She told me that my two options were either get into the CAR T-Cell Immunotherapy Trials or to continue with chemotherapy. She continued on to mention that her and I both knew that chemo wasn't going to cut it. She advised me to think about it, but what was there to think about? This was my life. I wasn't going to let cancer get the better of me. Plus I never imagined myself riding into the sunset and dying. No, unacceptable and it's not my style. I say while there is a way, we try it.

My doctor did some recon and when I saw her again, revealed that I didn't qualify for any of the CAR T-Cell Immunotherapy trials on the west coast. I did however qualify for the trials at the Children's Hospital of Philadelphia (CHOP) in Philadelphia, Pennsylvania. So what do we do? We try to get into the trials at Philly. Soon after I was informed I got in. This was wonderful news.

Now at this time I thought about Meagan. Like I've told you, I told her I got into the trials and she told me that this would change everything for me. That this was it. I believed her and she past away not long after that. I can't remember if I mentioned this before, but maybe I have. Meagan and I shared the same birthday. With her gone it holds a little more weight to me now. I celebrate it with her in mind, and I celebrate T-Cells with her in my heart. I remember to love everyday as a reminder to love like Meagan.

Getting into the trial was the first step. Second was to get it approved by insurance. Those assholes said no. We of course sent in an appeal which then was denied. We sent in another appeal which was then again denied. This was getting frustrating. I mean come on insurance! Really?! Was my life not worth it?! You've fucked me over from staying at Millers. You've fucked me over for transplant by taking me to Cedar-Sinai. Now you've got to fuck with my only chance left?! Ladies and gentlemen the bane of all our existence stupid ass insurance. Please do yourselves all a favor and invest in some good ass insurance if you can afford it. Do some research and pick a nice PPO or HMO with choices.

We decided we were going to do a hearing. Wait a minute, they said. A hearing you say? Let's talk about this. They respond. Before we go through such lengths let us discuss this again. They say. Exactly how much is this T-Cell thing gonna cost us? Does the hospital you will be attending for the trial know what insurance you have, the type of insurance you have and blah, blah, blah? Told you, dumbass insurance is like we don't need to go to court. Now they listen.

Anyways, I tell this to my case manager, who at this point is Monika Benson. Before transplant it was Dia Parungoa. Shout out to both of them because they are great ladies who get things done. I also tell this to my oncologist. They were both aggravated and and unhappy with my insurance stating that if they had just read the packet that they had submitted the first time they wouldn't be asking those questions now. Which means they denied us without ever reading anything.

This all got settled eventually with the understanding being that insurance didn't have to pay for anything, but standard care, which just means stays in the hospital. T-Cell Immunotherapy is an outpatient procedure/treatment. You only end up in the hospital if you get a fever or side effects. Potentially insurance can get out of this without paying a damn thing. Cheap ass insurance.

So here we were with all things settled. I had to fundraise for my trip to Philadelphia. I had to come up with money for the flights, food, hotel and taxis. During this time we were aware we would have to go to Philadelphia twice. Once to collect T-cells and then 3-6 months after to infuse the T-cells. In July 2017 I went with Steven to Philadelphia for my T-cell collection. We spent a week there and ate philly cheesesteaks twice. Once at the best place to get philly cheesesteaks, John's Roast Pork, and another time at the place that invented the philly cheesesteaks, Pat's King of Steaks. Steven happens to be a big fan of philly cheesesteaks. I on the other hand not so much. I did discover 2 things that week though. 1 is that to the rest of the world it's philly cheesesteaks, but to Philadelphia they're just known as cheesesteaks. 2 is that California lied to us, because a regular cheesesteak comes with just meat, cheese and the bread. You gotta ask for the onions and bell peppers. I'm glad we got to do something he enjoyed while we were there.

Now for those of you interested in it, T-cell collection was pretty much like donating platelets. Now before we did collection, a day before I went to have a tube placed on and in my neck. You might be asking why do I need another like if I already have my port? Well let me explain. During collection you use two lines. One to take out blood which then runs through a machine that separates the T-cells from the blood and the other line is for the blood to return to you. The entire process takes about 4 hours give or take if I remember correctly. They bring in a commode for you in case you need to use the restroom. That brought me back to the night in the E.R before all this. We came home and fundraised for the next time.

Now inbetween the time I left Philadelphia, to going back to Philadelphia, I was doing treatment to clear the leukemia before the T-cell infusion. During this time I got an ear infection in both ears from staph. One of my ear canals was so bad it was swollen shut. I did clear this, but now have a bit of a hearing problem since the incident. I also had a deviating eye problem. Steven told me I looked like a chameleon. Well he looks like the pillsbury doughboy, but I love him anyways. That issue was also resolved without the need of surgery thankfully.

We got a call from the wonderful Stephanie Fooks-Parker who is my social worker at the Children's Hospital of Philadelphia. She told me that we were expected back in Philadelphia in October for the T-cell Infusion. The lovely Claire White, my nurse coordinator, emailed me my schedule and if all things went well I was going home the second week of November. I would be home just in time for Thanksgiving. That was a relief for my mom. It was a relief for me as well seeing as I didn't want to spend another thanksgiving at the hospital. The past few years consisted of holidays in the hospital. Last year I had spent Thanksgiving alone in an isolated hospital room 2 hours away from my family. I didn't want anymore of that.