In many ways it seems unreal all that Ray & I too have gone through in the past year. I ponder on what the future will hold for us but that seems senseless because there really is no way for any of us to know. The best we can do is live for today & take each day as it comes.
Right now we hope to make it back home to Indiana by mid April but at this point we can't even plan for that because Ray may need to remain here to get another bone marrow biopsy & more baby vaccinations on his one year anniversary because he is part of a clinical trial. Yes, he could possibly have it done back north but we both feel strongly that it be done here where he is most comfortable with the hospital & doctors. They are in the process of checking to see if it's allowable to move the procedures up a couple of weeks.
Ray continues to have issues with his dry mouth which greatly affects his appetite. So many things don't taste good to him now; things that he used to love. They've prescribed several different meds & rinses but nothing is helping so far. The swelling in his legs continues to plague him too & various attempts with meds have not yet resolved that problem either. Occasionally in the evenings his temperature goes up & he feel puny but usually he feels better by morning.
This morning Ray had an appointment at the hospital to check on his hemoglobin level because it was slowly dropping again. Lo & behold it had dropped even more & therefore it turned into another day of what should have only been an hour long lab appointment, into an eight hour visit as they gave him another blood transfusion to boost him back up.
I must admit that the past week has been somewhat stressful & frustrating to me as I am trying to deal with insurance coverage. Because of the exorbitant monthly cost of his prescriptions (over $5,000) all indications told me that it might be beneficial for him to sign up for the Medicare Part D plan & let our other insurance become the secondary payer, thus saving any co-pays we normally would have. He would only pay $28 per month for the Part D plan & with the secondary picking up the co-pay, he would save $200 monthly out of pocket. So far I've spent over six hours on the phone this week hashing it out with the two insurance companies attempting to get their coordination of benefit process to work as it should. Imagine my shock when the pharmacy phoned me to say that Ray's prescriptions were ready & the balance due is $1,500. Well after several phone calls, I got that balance down to $160 but it's gonna be down to zero by the time I'm done. I WILL prevail! I had one customer service rep tell me that the primary coverage would kick in after my "retirement status ceases". Really!? When that happens, I'll be dead won't I?
But the good news is that Ray is able to get out & do things within reason. Unfortunately he's not quite able to do as much as he had hoped. He attempted to play tennis & within 2 minutes of stepping onto the court, he took a really bad tumble & skinned himself up. Fortunately the wounds healed up okay without any problems but no more tennis for him for awhile yet. He can play shuffleboard just fine & is enjoying that very much. And we've been playing a lot of cards with several friends. Of course there is also the weekly Karaoke Night in our park & various other things that we do that fill the days.
And so it goes...
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