So. Much. Time. (Reflections on chemo, ports, cold-capping and counting.)

I've had a number of events steal a year or more from me in the time warp that happens when your life is upended by something terrible.

Katrina stole about 17 months.

I was living in New Haven, doing interesting things, working at an awesome little coffee shop, studying at Yale, but in a way it just didn't seem like real life. I came back to New Orleans in January of 2007, after 17 months away, and then life started again.

I went to a wedding of friends a few weeks before the storm, and I was shocked when they had their 2nd anniversary, because in my New Orleans timeline, it was only a few months ago that we were dancing at the Columns. I'd lost 17 months of my life, as though time had simply frozen. Those months didn't exist.

Cancer is looking like it's going to be another big time warp.

I had the chemo talk yesterday, where I found out what drugs I'll be on, how often and for how long. I'll be doing 12 weeks of actual chemo and then another 40 weeks of herceptin infusions every 3 weeks. So, basically a year.

I'm going to have to have a port installed, which is so terribly sci-fi that I should love it. I don't love it, though. If you've never looked into what a port is, this means that I'm having a small plastic disc implanted under the skin on my chest, with a line going into a large vein. A port is an easier access point for taking blood and administering infusions when they are going to be so frequent, and potentially so toxic.

This little bugger is a way to spare my veins from dozens of IVs, so it make sense. I wasn't bothered when I thought it was going to be for 3-4 months, but living with the port for a year is freaking me out a bit.

Here's a comically dry oncologist from Nebraska explaining what they are:

So basically if I decide to get naked with anyone in the next year, (or, like, you know, wear a tank top), we're probably going have to have the bewb cancer talk. So yay.

Good news, MGH is getting a brand spanking new Paxman cold cap system in a few weeks before I start chemo, meaning I can hopefully keep my hair. For those of you who don't know what cold caps are, here's another video with an perhaps overly-perky ginger Aussie fella explaining the kind I'll be using.

So here's an brief an fairly unscientific explanation of why cold-capping works on a lot of chemo patients to reduce hair loss:

At the risk of super over-simplifying things, cancer is basically a bunch of f*cked up cells on a growth rampage. The chemo drugs like the ones I'm going to be getting target rapidly dividing cells. Other things on your body that happen to be made up of rapidly dividing cells are things like fingernails and hair follicles, and in the case of younger women with their lady-bits in place, her eggs, meaning there's some risk of post-chemo infertility. (That's another blog for another day.)

So they've found through load of studies that most cancers don't really like to metastasize to hair follicles. But the drugs still attack them. The answer some genius came up with a few years ago is to use cooling to constrict the capillaries around the scalp, reducing the flow of chemo-laden blood to the follicles during the infusion process when it's the strongest. This is why you have to wear the cap for 30 min before, all throughout, and then for 90 or so minutes after your infusion while the drugs are still highly concentrated in your blood.

So the cold cap machine is a thing that circulates coolant in a tightly-fit cap at between -15˚F and -40˚F. It's cold AF.

Considering my first infusion is supposed to take more than 5 hours, this means I'll be in the cap for about 7 or 8 hours, which seems like torture to me. But the other option is almost certainly losing my hair, and I'm just not ready for that quite yet. For me, it's less the being-bald part than it is waiting for how many years until my hair is long again. I've never been a short-hair person, and it would take about 3 years to get back to where I am. So I'm just not ready for that quite yet.

Then there's the price. I thought "Oh hey MGH is getting a machine so it'll pretty much be covered." Not so. The Paxman caps are $500 for the cap and another $200 for each infusion. So with four infusions, it's going to be about $1300, which suuuuuuuuucks. But I really don't want to lose my hair.

And then again, I don't want to pay $1300 and suffer for hours on end just to lose my hair anyway, so there's that.

So here I am again, counting in increments of time. I thought the Boston part of the cancer thing would take weeks, now it seems like months. The the herceptin infusions will last for a year, meaning I'll be living with a port in my chest for a whole year. The chemo is 12 weeks, then there are 6 weeks to recover, and then maybe 6 more weeks of radiation, adding up to 6 months, and considering I've already been dealing with it since January and the chemo might not start for another month from now, that puts me back in New Orleans around Halloween, meaning 9 months of life disrupted. The human gestational cycle. I could have made another person happen in the time it will take to even get back home for good.

(^^Stock photo of a watch. Because time, right?)

I'm counting in the minutes of cold before the infusion, in the hours the infusions will take for each drug in the cocktail, and then the hours and minutes afterward that I'll still be there, sick and scared and freezing, making an uncomfortable experience even more-so in the hopes that I can at least for a while look to the outside world like I'm not a cancer patient.

I'm counting in the dollars of what is covered and what isn't covered. What is out of network or in-network and what I'm approved for. Counting the different places that I owe money and how long until I can go back to New Orleans and get my mail and go through all the bills and letters and notifications that have arrived in my absence.

I'm counting how long until I get back to where I was on December 20, 2017, before I found the lump, when my daily struggles were things like planning a renovation, stress at work, cleaning the house, finding functional men to date in New Orleans, and feeling like I should really reactivate my gym membership or start doing yoga.

I'm wondering what increment of time it will be when I find myself thinking something happened a few months ago, when it was two years ago--when I realize that I skipped a year. Because I know how this goes.

And I'm wondering how many weeks/months/years until I feel like Normal Kate again and not like Patient Kate.

It's all just a matter of counting.

So that's my latest check-in. I have another blog a-brewing, so it won't be as long between posts next time. But, you know, don't go counting the days.