Hard

So much is hard about this journey that I never expected. I knew there would be the hassle of juggling multiple doctor's appointments, coordination of treatments, co-pays and prescriptions. But it is seriously a part time job keeping up with everything and making sure we stay on track and we are where we're supposed to be when we're supposed to be there and we have enough money to pay for what ever they're charging there : ) But this week we were totally thrown for a loop (multiple loops- loop-de-loops) when we went in for our "chemo teaching and financial counseling" at the medical oncologist office. I mean, we had already sat down with the awesome people at Duke and learned all about Temodar and Rion has really good insurance now, so what else could they throw at us?!?

Before I get into this I want to step back for a minute and bring up a few things. This post has been rolling around in my head for a few days and part of the reason I've hesitated to write it is because I wasn't sure how much detail to get into and how much personal information to share. The purpose of this blog has been and will remain two-fold: to keep all of our friends & family up to speed with that is going on and as a public record of what we went through so that hopefully somewhere down the line someone will find it useful when they are going through a similar situation. So even with the risk of TMI and over-sharing, I'm going to try and be as open and honest with what is going on, just like I have been.

Thursday's appointment shook us up pretty badly, I would say more than anything else we have been through thus far (diagnosis, the insurance fiasco, surgery, recovery, pathology, everything) because it made both of us realize that this isn't just something we have to deal with short term, this is something that will be a part of our lives forever. And not only that, but it will affect parts of our lives that we never expected. The PA we met with for the teaching that told us very matter-of-factually the purpose of the chemo/radiation regiment was to prevent recurrence but more than likely there will always remain cancerous cells in Rion's brain that either don't manifest themselves into a tumor or eventually do. That was hard to hear when Dr. Henry Friedman (head of  Duke Oncology) straight up said that they (our medical team) is working to CURE Rion. You can see where these 2 bits of information contradict each other, and left us confused as to the actual goal of treatment. When we go back to Duke in April, after the initial chemo & radiation treatments, we will be seeking clarity on why exactly we are going through all of this. I have no doubt that it's in Rion's best interest to pursue a rigorous treatment schedule, to fight hard to get rid of as much cancer in his brain as we can. But can he be cured? Can it be eliminated completely? After Thursday we don't know the answers to these questions that we were fairly certain about prior to the appointment.

So, after that wonderful shock, we meet with the financial counselor to discuss the Temodar. To bring everyone up to speed, Rion is to start BOTH chemo and radiation treatments next Tuesday, but we had yet to obtain the physical chemotherapy pills he will be taking. Me being naive, thought the prescription would just be called into the pharmacy like anything else and we'd go pick it up. I had actually called the medical oncologist's office earlier Thursday to inquire about this because I checked and it had not been called in yet. They basically told me to just wait until our appointment but in the mean time they called Rion and told him he had to call the company that handles the prescription drug benefits and found out how much the Temodar would be, and that it would be shipped to us AFTER we made payment for it. Well Rion called and let's just say it was much more than I anticipated it would be, much, much more! Around $500 for the 1st 28 days worth of pills. But the financial counselor said that will our income, which is only mine now, we should qualify for financial assistance through an organization that helps people pay for their chemotherapy medications. The only downside is that it would take more than 24 hours for the application for assistance to be approved and we needed the medication to be shipped by Saturday afternoon to ensure we received it Monday for him to start taking early Tuesday am. So, we decided to give it 24 hours, see if the financial counselor could get our application expedited and if not, we'd have to put it on our credit card so they'd send it to us.

At this point we're thinking, ok, not only is curing Rion not going to happen, but we're going to have to probably put this huge unexpected expense on our credit card, which I've already had to use more than normal in the past few months for other unexpected expenses that have come up and we did not have the means to pay for them out of pocket. Great!

Simultaneously when we're discussing this with the financial coordinator, the oncologist social worker comes in to discuss some other important details about how this whole process is going to affect us, specifically as young adults. She offered us some information on young adult support groups and then asked if we had any children. When we told her no, she seemed surprised (isn't everyone HAHA.) We knew we couldn't try for conception from the time Rion began treatment up until 6 months after completion, but the chances of infertility were so minimal we might look into fertility preservation, but it wasn't an absolute necessity.  Up at Duke, we even got a personal narrative about a gentleman similar to Rion who was diagnosed at a young age with a brain tumor, chose to do sperm banking but then after treatment was able to conceive naturally without any problems. Ok, great, we're going to be like that! (Nevermind that God knew we were planning on starting a family very soon and delt us the blow that we would most definitely NOT be doing that which was some of the HARDEST news we received about the side effects of treatment.) But back to Thursday, the social worker here in GA was totally contracting what the social worker at Duke told us, and once again, it was about something extremely important! She sent us home with a kit for sperm banking by mail but clearly our window for getting it done (and getting the financing to pay for it) was very, very short.  When we got home and started reading the information about financing, provided through the Lance Armstrong LiveStrong foundation and the steps required to complete the kit, we thought there was no way we'd be able to do it and seriously considered saying forget it and not even trying. For the financing application, we would  have to get the oncologist to fill out a statement verifying Rion's diagnosis & the treatment regiment he would be following (to prove there was a need for fertility preservation,) send in the application, and have it approved all before Monday which is the last possible day to send off the kit. And for the kit to even be accepted, Rion would have to get blood work done to treat for infectious diseases (HIV & Hepatitis) and the results would have to be sent in along with the kit. So we had Friday to get everything done (blood work, financial aid) in order for this to work. I felt like crying.

I'm not trying to be dramatic, but I am going to cut this off now that I've sufficiently described our Thursday experience. We didn't do anything else for the rest of the day (it was 5:00 PM when we got home from the appointment) except for cry and talk. I will foreshadow a bit and say that Friday was a much, much better day and most of our issues have been resolved to our liking. But the details of exactly how that happened will have to wait for another day as it has taken me over an hour to type all of this and I've got things to do today.

Love and Prayers,
Emily & Rion