Karma

Hey guys! Hope everyone is doing well. Yesterday I started my first treatment and radiation sessions. In fact, I am just now returning from my second radiation treatment this morning. Everything went fine, except for being a little behind. Considering how many people they serve everyday, it was really not that bad. The first thing I had to accomplish was simple lab work. The nurse who took my blood was a pro! It was like she said hello, and before I could respond she had drawn two vials of blood. I was impressed. After that was complete I went to the infusion area and waited to be called back. The wait was about an hour and then once I was back there the infusion took about two-and-a-half hours. First they give you a liquid similar to saline. They let that run for about 15 minutes and then they give you and anti-nausea medication and let that run through your system for about another 15 minutes. Then comes the chemo. I am taking Oxeliplatin (sp?) and Xeloda. The Oxeliplatin is the IV medication and the Xeloda is oral.

Unforatunately I do not have the Xeloda just yet. The medication is about $2300 a month, so this medication will probably run around $8,000 to $10,000 for my entire treatment. My insurance would not approve me to get it though the Kirklin Clinic pharmacy, and the nurses said that it is not available at normal pharmacies usually. So, the social worker in the infusion department called my insurance company and they informed her that I would have to receive it through the mail instead. So, thanks to my health insurance I cannot start a medication on time. I am having to follow-up today to make sure that I receive it as soon as possible. The mail order pharmacy, Caremark, was supposed to rush it and call me today and touch base with me. The karma is that I have a social worker advocating for me to receive medication. That is what I did for HIV patients at the Health Department in Mobile, so I know that it is not easy. (Really people, I know this blog does not need to digress into football talk and political warfare, but our healthcare system sucks!!!! We can really do a better job of making things run smoother.) The nurses were really upset about everything and I am sure the doctors love it when one of their patients cannot get the medicine they need. Believe me, it happens more than you would realize.

Anyway, everything went okay with the infusion. I did not feel nauseous, but I am sure that it will happen over time. The two medications have weird side effects and I have to steer clear of extreme temperatures. Not just climate, but everything. No hot showers, not ice in my drinks, no cold foods, no extremely hot foods, etc. It really sucks. What I am really upset about is that both medications cause nueropathy which will cause difficulty with my hands and feet. That really sucks for someone who plays guitar as religiously as I do. The good news is that it will slowly go away after treatment.

The radiation is a breeze. You basically lie down in the mold that was made during my planning and let the machine do its work. In about 10 minutes you are done. Piece of cake. So, other than the medication hold-up I am doing pretty good. The staff at UAB is really awesome. They work really hard to make sure that their cancer patients receive the best care. From the registration people, to the nurses, to the social workers, to the doctors; they are really fantastic.

Well...enough of this rambling. I hope to post another podcast soon! Also, the school of social work is holding a benefit concert for me on October 18th at Little Willie's in Tuscaloosa. That is the Thursday night of the Alabama Tennessee game weekend. I will post updates about it in the future. All are welcome. My friends at the school have established a charitable account that people can make donations to. I will update everyone on the status of the benefit as I find out more information.

Peace
Josh

Update (2:00 Friday afternoon)...I spoke with the Caremark pharmacy and they stated that Viva would not authorize my medication under my prescription plan and that it was covered under my major medical. So, my doctor has to complete a medical necessity form and send that to Viva who will review the case and make a decision. This is really pissing me off!!! Medical necessity? I am pretty sure they do not prescribe Xeloda for anything other than cancer. Is that enough of a medical necessity for you. Newsflash...insurance companies do not care about yours or your family's health. My doctor is completing the form and sending it back and then we wait on Viva to hopefully authorize it. People should not have to go through this! I guess I have some bad karma out there too. Hopefully I will start that medication on Wednesday I guess (Monday get forms and authorization, receive medication on Tuesday, start medication on Wednesday). What really sucks is that the social worker told me that Xeloda enhances your radiation treatment. Great, a weeks worth of radiation before I start a medication to enhance its effect. Anyway...sorry about the anger.

Update (4:30 Friday afternoon)...I love social workers!!!! The social worker from the hospital walked my application through with the nurse and doctor at the clinic. She faxed the information and called to follow-up with the pharmacist. The pharmacist was going to call my health insurance company and follow-up. Hopefully it will be authorized this afternoon and I might receive the medication on Monday. The social worker also referred me to an organization called Healthwell Foundation. They assist people with co-payments that are outrageously high. I completed the application for colorectal cancer patients and will send in the rest of my information Monday. I will not get any financial assistance immediately, but seeing that we will have to pay 20% of $2300 each month for about 5 months of treatment, this will help out enormously.

Update (Saturday Morning)...The pharmacy called me yesterday evening at about 5:30 and had been contacted by health insurance company. The medicine was approved and I should receive it today before noon. I cannot say how relieved I am. I will start on Monday morning with this medication. Finally things will become a little more routine. I am probably going to get sick, but at least things are the way I like them...predictable.

So It Begins

Well, I finally am scheduled to start treatment on Thursday. I am still as nervous as I have always been. I get the feeling that this anxious feeling will never really go away. Cancer survivors have shared with me that they still get nervous when they have their tests done every year. So I guess I will just get used to it over time. I have been thinking about alot lately and I am still not sure what to make of all this. It is really difficult to find meaning for something of this nature. I hope that I can expand on these thoughts in the near future, but right now I am just checking in.

This past weekend we were visited by Wade, my friend from Charlotte. He flew in for the weekend on Friday night and we went out and met his step-brother Tucker and his family. Tucker and his wife Tannis have a baby named Rome and she is really cute. The weekend was really great (except for the Auburn loss...looks like a long season at this pace). On Sunday we took in a movie, Superbad. It was super funny! I have not laughed that much at a movie in awhile.

We also received a very special gift sent by Wade's in-laws. If you remember the story that started this blog, then you will recall Team Llewellyn. Well, Jane (Team Mom) sent Kimberly and I a really nice portfolio with which she kept important information during Drew's journey. The portfolio was accompanied by a really nice letter and email that Kimberly and I feel was deeply heartfelt. I must say that some of the most positive vibes during this whole experience come from other cancer patients and their respective families. I am not minimizing what I have experienced from my friends and family, but you feel a certain connection to other patients and their families. I have found myself on numerous occasions in conversation with people in waiting rooms about how things are going. I never knew these people before in my life, but it just felt natural.

Anyway, I hope everyone is doing okay and I hope to speak with you all soon.

Josh

Starting Treatment

Hello everyone, we finally heard Friday that Josh is going to start treatment this coming Thursday Sept. 13. He will be getting radiation and taking pills (Xeloda) 5 days a week, plus going to the infusion lab and getting IV medicine once a week. He will start all of that on Thursday. They tried to get him in for Monday but the infusion lab was already booked up that day. I'm so glad he's finally about to start treatment! He will do that for 6 weeks, then wait about 5 weeks, then have surgery, then have 3 more months of chemo. So he will probably be having surgery in early December. Thanks again to everyone who is commenting on here, sending us emails and cards, calling us, visiting us, thinking about us and praying for us. It really does help us keep our spirits up. Hope everyone is doing well--
Kimberly