We're playing the wait and see game again in regards to Rion's next round of chemo that was supposed to start last night. When he went to the doctor Friday for his last blood work his platelets were only at 60,000 (the lowest they had dropped previously was 70,000 and that was at the very end of his concurrent chemo & radiation treatment.) In addition his neutrophil (type of white blood cells- read more about them here) are lower than they have been before and even though his white blood cells as a whole are ok, we don't want the neutrophil to go any lower. Rion e-mailed his blood work to Duke last Friday and they called him Monday & told him to go back Tuesday to get it checked again because they really want his platelets to be at at least 100,000 before taking any more chemo. Well as of Tuesday they are only up 1,000 to 61,000. So...no chemo for right now. Rion will go back next Tuesday to have blood work done again and fingers crossed everything will be back up. We are both ready to get this over and done with and with only 3 rounds to go it feels soooooooo close! Plus we had really wanted to get 2 rounds in before Duke next month (appointment on the 28th) so there would only be 1 more cycle to finish before the 6 months would be up. There is also that persistent nagging suspicion that every time we delay chemo we are letting the tumor grow back. Highly unlikely but it's hard not to feel that way.
We should have known his platelets were low because he has a lot of unexplained bruising on his legs. He has also been more tired than normal but we thought that was because he has been so much busier and dealing with the horrible heat/humidity (might break another record high again today for my non-local readers and the heat index will be over 100F.) Rion was able to get a handicapped parking tag to minimize the amount of walking out in the sun he has to do when he runs errands. The days he is taking chemo it is especially hard on him to be out and about but he doesn't want to feel like he is stuck at home. The front row parking is kinda nice but I feel guilty "enjoying" this perk, like it's some how wrong. I don't know, Rion says I'm crazy (which we already knew.)
Rion is feeling really good & upbeat, going about life as normal. I am pretty much doing the same. I do notice that we're starting to settle back into our old ways of acting like a "normal" married couple instead of one that just received devastating news. We've been arguing about stupid stuff from time to time but now I feel overwhelming guilt when it happens- like I am just asking for something to go wrong and make me really regret being anything but a stellar wife. I have noticed this happening more and more lately as we move out of the initial shock phase and into the new normal lives where treatment isn't the main focus. The bills can no longer be ignored and it's time to quit neglecting everything else in life that must be dealt with. Everyone continues to tell me what am amazing and wonderful wife I am and how lucky Rion is to have me but all I see are my flaws and how I still criticize and refuse to give in on the things we don't see eye to eye about. My stubborn side seems to be winning against my protective/nurturing side! I guess it's all about balance and now more than ever remembering to bite my tongue and not lash out when things upset me. Not to make Rion seem like a perfect angel but he hardly ever gets upset with me and that just makes me feel more rotten for having a temper like I do.
So...if anyone else stumbles upon this and happens to be going through something similar just know that you're not alone...and I'd love to hear from you since I haven't come across anyone in a similar situation. Getting through the devastating part when we clung together and to our faith was almost easier than trying to figure out where to go from here.
One last piece of (good) news- 2-3 months after finishing the paper work with Merck, as of this week they have finally paid 100% of Rion's chemo cost (was costing us $100 a cycle in addition to the initial $480) AND we are getting reimbursed for everything we have paid out of pocket for chemo up until this point. That is HUGE because it will allow us to pay off the credit card within the next month or 2 and be credit card debt free for the first time in a year!!! (I LOATHE credit card debt.)
Speaking of which, does anyone have experience working with a debt consolidation company??? I am having trouble keeping track of the 12 or so outstanding medical balances that we owe and I've missed a few payments here & there. It would be so much easier if we could just make 1 payment every month and have someone else divide it up for us for...but i don't want to pay interest. Is that even possible?? I feel like I am going to be an expert in so many different areas that I didn't have a clue about 8 months ago- lucky me right?!
This has gone on long enough. I'll check back soon to let everyone know when we start chemo again so we can all pray for minimal side effects...it worked last time which is why we're so gung-ho to get at it again and get it over with.
Emily
Hi Emily, hope all goes well with the blood check this week. I can't tell you how much I enjoyed you & Rion at the family reunion. You both look so good! I felt like I was sitting aT a table with celebrities! Ha! God bless you as you continue this journey together. Love you both.
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