While we would ideally like to have him get 2 more rounds of the mega strength dose, we have to consider that it is taking him almost double the amount of time it should between treatments which is not good. So by lowering the dosage we can *hopefully* get both rounds in before we return to Duke at the end of next month (my fear is that if he still has more chemo to do they will make us come back again before we're cleared to officially stop the chemo & have most of his scans done down here until further notice.) I never in a million years thought I would be this excited to have Rion taking chemo but we're to the point that we are so over all of the doctors appointments; he goes once a week for blood work at the local oncologist and to Duke every 2 months- not to mention the countless e-mails & phone calls that are exchanged each week to keep everyone in the loop- and we are always planning our life around chemo weeks...which has been especially difficult since we don't know until the day his blood work is good which weeks will be chemo weeks.
We received some really, really good news yesterday. Every time we have an MRI at Duke they prepare a summary report of the MRI findings, specifically in comparison to his previous MRI. They note why he's having the MRI "30-year-old male status post resection of a left temporal oligo astrocytoma" and then they look at the re sectioning cavity (where the tumor used to be) and the surrounding areas (where new tumor is most likely to develop.) The one from August had 2 pieces of good news: 1) "Decreased conspicuity of nodular enhancement posterior to the resection cavity and decrease in extra axial fluid collection" and 2.) "No new area of enhancement." To my simple mind I take that to mean that the "iffy" spot we saw before is shrinking, there are no new "iffy" spots and he is continuing to heal from surgery. Could we ask for anything better?!? This kind of information just puts my mind at ease that we are on the right path and making the right decisions, although it might not always seem like it. I wish I was more faithful and didn't need this tangible evidence to reassure me but it would be a lie to say I don't. While thanking God for this amazing news I am also asking for Him to increase my faith and take away my doubts & fears that seem to creep up over time.
As always, thank you for all of your continued thoughts and prayers. We've had a good # of people ask us lately if we are going to still be planning some sort of organized benefit or fundraiser and we've officially decided to not move forward with that. There are so many reasons for our decision but the main one being that we feel like we (kinda. sorta. sometimes.) have a handle on things. Our finances are a mess but slowly they are becoming an organized mess (I have still yet to pay a dime to the hospital in Athens from Rion's initial trip there last year when this all started but they are completely unwilling to work with us so they will stay at the back of the line!) Most doctors/hospitals are understanding and willing to set up reasonable payment plans. Additionally we have applied for charity/co-pay assistance/pay-in-full discounts with everyone and been fairly successful at having the bills reduced or in some cases eliminated. I would estimate we still have around $17,000 in unpaid debts but that will still be there when Rion is able to work full time again and we can chip away at them a little more quickly. Something else I've had to accept over the past year is that I simply can not control this situation and I have to learn to react in the most positive, effective way when somethng is thrown at me. I have also taken my organizational skills to a previously unattained level having to keep up with everything! Not to say I don't occasionally let something slip through the cracks : )
Last I want to point out that while Rion looks and feels amazing, there are some parts of him that have been changed indefinitly. We had an appointment last weekend to set up wills & advance directives and we video recorded the session. While Rion was totally fine with that and knew ahead of time, the pressure of being on camera made it really hard for him to think and formulate answers. What we take for granted every time we open our mouths to verbalize a thought doesn't come automatically to Rion any longer and the more stressful the situation, the worse it is. For example, we noticied almost immediately after surgery that Rion had difficulty saying the blessing before dinner (especially with his eyes closed) and ordering at a restaurant. When he's in the spot light and has something very specific he wants to say is when he has the most trouble. It hurts me to watch him struggle but I'm so proud of him for not getting (too) frustrated and not giving up on himself. He is such an amazingly strong person and I continue to thank God for each and every day we have together because being married to him truly makes me a better person.
Here is a cute picture I snapped of Rion the other day when we were playing around. He decided to put Scooby's halloween costume on his head and tell me the frog was eating his brain. I'm not too sure about all that but I think it's adorable and shows how playful & funny Rion is all the time!
