I just pulled out the file folder labeled "medical" to embark on organizing it. When I couldn't pull out any one single piece of paperwork because it was all jammed in there so tightly, I put it back on the shelf and closed the closet door. Let's leave that for another day ... .
In there are countless prescription and co-pay receipts (tax filing ought to be fun), blood work reports, CVS receipts, test results, bills, and who knows what else. As the dust settles, the practical realities set in. Having cancer requires a lot of paperwork. Paperwork that I never expected I'd have to deal with for many, many moons.
Months ago, it was recommended that Craig and I fill out living will, power of attorney, health care representative, and health care directives paperwork. So, we found a lawyer and somehow got through the paperwork without letting the reason we were filling it out get to us too much. It's just a technicality, right?
"If the time comes when I am incapacitated to the point where I can no longer actively take part in decisions for my own life, and am unable to direct my physician as to my own medical care, I wish this statement to stand as a testament of my wishes" reads the opening paragraph of the document titled: "Document Concerning Health Care and Withholding or Withdrawl of Life Support Systems."
In short, "when do I want someone to pull the plug and who do I want to give the authority to to make the call when it's time to yank it." No, not heavy at all.
We had to decide who I'd leave my estate to, who could make health decisions for me if I could not, lots of uplifting things. It was the third day after a chemo session and I remember feeling so woosy and out of it having to make these vitally important decisions. I had never thought about dying and there I was getting my affairs in order. Very strange. But now it's done and over with - quick like ripping off a Band-Aid.
And then there's the bills. It's like they wait for you to get through your treatment then they all come piling in at once. Every time I walked through the door of my oncologist's office, I was whopped with a $30 co-pay (a fun surprise to learn after the fact). That's every treatment, every follow-up visit, every Neup shot-three times per week. I guess they don't want to harass you for money when you've got enough on your mind during an office visit. The co-pay for one of my anti-nausea meds alone was $80 every treatment. Then of course, the hospital stay, the scans, the drugs not covered, the co-pays for all the other specialists I've been sent to, the lab work ... the list goes on and on.
So it's $600 here, another $425 there. And I have great insurance. If I didn't, the hospital stay for my biopsy alone would have set me back $13,214.40. I paid nothing. The cost of just the drugs taken in each chemo infusion hovered around $1,800 every two weeks - I can't complain about the $30 co-pay.
It's crazy to me to think of the millions that have to go through this without comprehensive health insurance - what an awful, awful reality to have to deal with on top of everything else. Sure, we had quite our share of unexpected expenses this year, but I know that we are very, very lucky. The need for health care reform is so incredibly great. No one should have to choose between eating and getting the drugs that can save their lives. And no one should be denied coverage because of pre-existing conditions. There is no way that I'd be able to get health insurance now with this big red-flag of cancer stamped on my medical record. Never mind life insurance. Our financial advisor told me that it'll be at least five years into survivorship that I can even apply to get a decent policy. Again, luckily, I'm covered to the max that I can be through my employer with no questions asked. At least it's something.
Now comes the requests to participate in research studies and post-care evaluations, which I am all for. I plan to participate in any study that I can in the hopes that it can help any future Hodgkin patients. Though the lists of questions are at times perplexing, I know it's worth the effort of filling it all out.
I used to like having what I'd call "administrative days" when I'd go through all of our bills and organize everything. Now I laugh thinking about how deciphering the line items in our cell phone bill was difficult. Refinancing our mortgage? Ha. Looking back, that was a breeze.
Now? Reading through all the "Explanation of Benefits" paperwork that rolls in every month detailing which doctor can bill me what has at times made me more nauseous than the chemo regimen itself. Keeping up with it all is exhausting.