Oh where to begin...

This has been one helluva week. It's difficult to know where to begin which is why it's taken so long for an update.

To set your minds at rest, William is okay. I have a hard time spitting out "he's okay" because he's only "okay" as a person with lymphoma can be. He's not "okay" and won't be "okay" for quite a while. He is, thankfully, "improving" steadily. After two years of clean PET scans perhaps this lead bowling ball in my stomach will melt and I'll be able to say, or hear, "He's doing okay!".

He's losing hair pretty substantially now. While we don't really care about the cosmetic aspects of that, the hair loss is a constant reminder of the lethal beast we are battling and the toxicity of our best weapons. We try to laugh about it. "Yanno honey. I've never seen your upper lip..." and "I'm afraid to blow my nose because I'm afraid my nose hair will come out." But the truth is, that each time he reaches up, combs his fingers through his hair and comes away with 20 or 30 hairs, our stomachs drop.

The "Neulasta" portion of the tale:

Because the chemo is lowering his immune system, as chemo does to most patients, he is getting injections of a drug called Neulasta to boost his blood count. He could explain this drug to me ten times a day and still most of that information oozes rapidly out of my brain. The drug has something to do with recombinant DNA. It's a heavy duty drug. However, it is not made of platinum, gold and diamond dust and therefore, does not warrant it's $2,480.00 (per injection) price tag. Look up the statistics on how many people receive chemo each year and figure that 90 to 95% of those patients are going to suffer a low blood count. If every office is like ours and won't give the chemo with a lowered blood count, then figure every one of those patients is having to fork over at least $4,800.00 per month for Neulasta.

The only reason we know how much these injections are is because we had to change insurance companies at the beginning of January. We had to use the conversion insurance that would cover the pre-existing illnesses. We're paying over $1,500.00 per month just for the two of us, for this new insurance, but I won't go there now, that's another whole blog post or three. Suffice to say it's lousy coverage and we will not be keeping it once he's clear of cancer.

Anyway, because we have new insurance the doctor's office had to be sure we hadn't just printed up fake insurance cards on card stock (because that's all the insurance company provided, flimsy paper cards, damned things should be 24 carat gold embossed). The insurance coordinator came back and said she couldn't get confirmation on our insurance. She said she got a message saying the office was closed "due to holiday snow" (that is a precise quote). They asked us if we wanted to pay the $2480.00 out of pocket along with the 750.00 chemo (yes, the shot is three times more than the chemo treatment.) "Good god, we can't pay that in one go."

I looked at my card. The insurance company is in Indiana. I told her "No way are they closed for snow. They're in Indiana. They get snow all winter, every winter. This is why none of us can find parking in the metro area because the spaces are taken up by people from Indiana. I'll call them."

Here is a lesson I've learned. When you are in dire need of speaking to an actual person and can't wait for useless recorded information or wander aimlessly through a phone menu maze, not when you are just late to meet a friend at Starbucks because THAT would be really cheesy of you, but when you are in dire need of speaking to a human quickly, listen through the menu and if you hear "for all other questions..." choose that option.

I ignored the options for "benefits" and "verification" and chose "for all other questions...". I was instantly connected to a real human and handed my phone to the insurance coordinator. I then followed her to her desk and sat with her while she was transferred to various desks, went through a couple of phone menus, before finally getting through to the person who could verify our insurance and tell us if we needed to have the treatments pre-certified. Sitting by her side like a loyal old dog prevented her from giving up on the madness of being transferred all over India to find out if we had insurance.

Straightening out this mess took about an hour. When I got back to the chemo lab the nurses had taken the I.V. out. William says he overheard the nurses talking about how waiting too long might allow a clot to form or something but when I asked them why they'd taken it out they told me "We were told the insurance couldn't be verified and you couldn't pay for the Neulasta". If it had been later that same day I'd have bitten her, but I had "get the chemo done with" tunnel vision and didn't think about the ramifications of what she had just said. Wednesday turned so sour for me that I actually didn't think about the fact that if you can't afford Neulasta and you don't have insurance YOU DIE, until late Thursday.

One more thing about Neulasta. The side effect (yeah, more side effects) is bone pain. So, within an hour post-Neulasta William begins to ache which progresses to a goodly amount of pain all over which lasts 2 or 3 days. Just doesn't seem fair does it?