13. August 2013 11:24
It all happens for a Reason
What a crazy couple of weeks I have had. Lots of ups and downs. Or maybe it is lots of downs….then it has been ups. In the end I feel it will all work out for the best.
Two weeks ago I was as sad as I have been in a long long time.
Last week I was as happy as I have been in even longer time.
Here are highlights:
- I am doing the SLC study and NOT going to be inNYC Now
- The drug is PD1. (Which is short for something.All I remember is the D is for Death)
- It helps boost my immune system and makes the Cancer more visible to my immune system.
- pretreatment tests: Bone Marrow Biopsy, PET, CT, Blood, STD’s etc.
- Day 1 is about 4 hours long. Then blood test day 2.
- Once a week test for 22 days. ·
- Then the drug will be about 2-3 hours every other week.
- Drug company will pay for Room and board and most things in this study.
- I can stay at home for the most part.
- SLC is now my kind of commute
Little side effects. For the Details: No Plan, No hope, lots of depression.
After sending my update on Thursday I start to get really bummed about my whole situation. I had a BBQ with friends and family on Friday and I really did not want to really talk to anyone. Kind of a buzz kill (not something I am used.)
I woke up Saturday totally depressed.
I had only a couple weeks of my life left, as I know it. And I am stressing about what is coming next. And what to pack and such….
I even went to a going away party Saturday night. I tried my best to put on my happy face…but all I could think about was this was most like last time I would see these friends. And it had nothing to do with them coming back to moab.
When I had the plan to live in NYC the plan looked very straightforward with lots of fun activities planned on the way to NYC.
NOW…It looked like I would be in one meeting/test/exam to the next to then be sick for the rest of my “life.” (that is something I do not even want to really thing about)
I sent a message to my friend Jen (who had planning on being my road tripping partner across country) about my rough day and feelings. She sent back that we should still do a small trip from SLC to Jackson Hole or glacier national park. After thinking about for a little bit I realized this could work.
My mood has been better ever since. (more on this later) I went to Salt Lake City on Monday to see about doing a new trial at the huntsman cancer center. This was a study I wanted to do at the beginning of July but it had filled up at the time. It was one of the firstthings I thought of when I got the “bad” news about the study in New York.
The Huntsman has this amazing reputation. Which is totally wrong. This is the worse setup facility I have ever dealt with. Including the lack of communication at the LDS bone marrow clinic oh so long a go.
I wrote a little about this in the last update. There is a lot of miscommunication and misunderstanding at this facility. I am curious if that is because it is a university hospital.
First off the parking is horrendous and there are streets going every which way. (UofU is very poorly planned.) I even got a ticket for parking in the wrong section.
You walk into this incredible looking building on the side of the hill over looking the Salt Lake Valley. Seems like a good start right? Then the Security guard is at the desk playing on his Ipad and does not even look up as people come in and out. No real direction of where to go. So we have to find the elevators. (very much not MD Anderson. )
The floors have clinic numbers on them. 2b. no indication what clinic it is. (2b is the Hodgkin’s clinic. 2d I think is breast cancer.) How the hell am I supposed to know that? but there are other floors that are also poorly marked.
So I look on my phone to find the one email I received.
It says “here is the consent form you will have to sign” with a couple of attachments. No this is where you should meet, park, go etc.
The person, Debbie, that sent the email to me did have an office number in her signature. So we thought, well that is where we are supposed to go. So we went to her office. After walking through tons of cubicles to get to the office. (poorly marked office numberalso.) Her assistant then took us to go meet her.
She put us in a waiting room for 20 minutes. While in the waiting room I got a phone call from the dr.’s nurse who was wondering if we where going to show up. We were at the wrong waiting room.
Then we were taken to the back to sign consent forms. When they started to do the blood work the nurse asked for my wristband. What wristband? How did you get back here with out a wristband or registering? I don’t know. I think that is a great example of the poor organization overall.
It might seem odd to you that I am laying it on thick for how poor the huntsman setup is and yet I still choose to go with them. It is frustrating at first when a hospital is poorly setup but I am not there for the organization, I am there for the treatment and what can be my cure. It does concern me that things might get dropped and I probably will not get as many reminder phone calls. Hell they are the only facility I have dealt with that can not put my records and tests up online.
Other than the runaround my mom experienced. The Staff was incredible. Debbie turned out to be a very good resource and has helped us a lot already.
Dr. Halwani was really great also. He really laid out the differences between the two different trials I am looking at. He also drew us pictures. It was like I was in biology class again. We spent over an hour with him.
There were a couple of things that really sold me on this clinic. One was the huge recommendation from Dr. Houda at the BMT clinic. He really had high praise for dr. Halwani and this drug. I have always very highly of him since my heart clot issue.
This study also has lots more financial help. Not a limiting factor but it really helps. With Medicaid, a more liberal drug company and being in SLC all those add up.
The drug itself has very few side efforts. It does not make people sick. They did have 3 deaths from inflamed lungs, very early on. (I guess that is worse than being sick) There are also some potential issues with liver, and kidneys that they will want to monitor. Overall it is a minor amount.
The schedule seems to be much looser.
The plan would be to start treatment on Aug 12 or 13. I am still waiting to do the pet scan. Once that is complete I will move right to the treatment.
The treatment schedule is on day one: 4-6 hours of infusion and monitoring. Day 2 they test the levels of the drug in my body. Then they check again on Day 8, 15,22. On day 28 if everything is going well I will be start doing the drug every other week for about 2 hours. With the next day, blood work on the amounts of the drug still in my body.
There is not really a time frame. They do not expect anything until week 8. That would also be the first set of Pet scan tests.
I can leave the tests at any time but the drug company is obligated to pay for the drug for at least 2 years.
By the end of the meetings I knew I was going with this trial. I hope I choose this for the drugs affect and not to save another trip to NYC. This just happened to give me another day on my road trip.
I did have to do a Bone Marrow Biopsy. Which requires a giant needle to be driven into my lower back/hip to get bone marrow. It is not terrible but it is not fun and I was sore until…well I am still sore. I then they told me, I could not swim for 48-72 hours…Which I did break.
I also had to drive all the way to Riverton to do a CT scan. So it takes about 35-40 minutes to drive to Riverton from UofU and the scantook 10 minutes. Then I had to drive back. So the plan is tomorrow or Tuesday to drive up to SLC if the insurance/drug company issue is worked out and do the pet scan then probably start the treatment right after that. So Thursday or Friday? I think they want to do it on a Monday or Tuesday. We shall see. (feel like I use that answer a lot. )
In case you cannot tell the reason I am so late with this update is because I had a wonderful time on my road trip. Which included great hikes in Grand Teton, Yellowstone, and hanging/floating the river with an old friend in Bozeman Montana.
On one of our amazing 5 mile hikes (that Tony Dehann suggested) I started thinking to myself. How can I have cancer? I feel great! I felt great the whole time. Sometimes I just do not get how this can be. I feel as good physically as I have. I have done NO physical activity for over a month. And Bam I have no issues with hiking 5+ miles at 7500 feet. Or playing soccer for 2 hours two weeks ago. It really throws me for a loop.
Maybe this next pet scan will come out clear…here’s to hoping.
I do have two other shout outs I would like to put in here. First is to Tricia Grawet. And her friends Tessa and Shawn Metzger. Tricia read my post from last week and was able to help me get my car into the ford garage that Shawn works at. It amazing acts of kindness like this that make me know the world is right. It seems like such a small thing but it was so helpful in my crazy little world last week. Shawn and Tessa went WAY out of their way to help someone they had never met. Thank you guys.
My friends Kalen and Clarissa. I did not intend really to head all the way to Bozeman but I am really glad I did. Kalen is a friend that I went to high school with me..though we actually really did not like each other in high school. He ended up working for SGRE years later and he became a good friend of mine. It was really nice to see someone I had not seen in a long time and just relax and enjoy life. Thank you two for showing me a different part of the world and your great town.
It is all for a reason.
The other is a random set of happen stance. Jen and I were looking for a camp spot on Thursday night. Every camp spot was taken in theTetons that we wanted to stay at. So we tried one in town that we had called and said they had room. When we looked for them we could not find them. We called again and they were way out of town. So totally bummed, we decided to buy some hotdogs and easy over the fire cooking food (we did not bring anything to cook with.) and headed to the one spot we knew would have spots. A very crappy/expensive/ overcrowded spot just inside the park (with no view of the tetons.) When we rolled up to the camp office I noticed the “Escape Adventures” van in the parking lot. This company operates in Moab and my company; Sheri Griffith Expeditions does a bike/raft combo trip with them. When we went to the door there was a line about 6 people deep. Jen looks at me and says I know this guy. It turns out the Escape Adventure guide is a friend of hers. After a little conversation he looks at us and says don’t camp here. There is amazing free camping about five miles up the road with camp sites that overlook the tetons and have the most amazing sunrises. He was right.
Maybe I am reading too much into it…But shit happens for a reason.