Pour Some Poison on Me (In the Name of Love)...

...the title is sponsored, of course, by one of the best hair bands of all time - Def Leppard.  These are the things that spring to mind when you were a kiddo in the 1980s. All of us have special lockboxes in our brains just chock full of terrible lyrics and catchy tunes. 

But enough about that. Let's see. Last time I checked in with you all, I had had my PET scan and started chemo again and summer was well under way. Since then, I've rallied a bit and gotten used to the new drugs, so we were able to take a family trip to Iowa by way of South Dakota (I know, I know - it sounded like a good idea at the time), where we visited Mount Rushmore and the world-famous Corn Palace. (What? You've never heard of it? Tsk, tsk - you have no culture.) Iowa was lovely - we hung out at Nick's aunt and uncle's lake house and saw most of his family. The kids were wildly excited to spend time with their cousins! Then we came home and went up to the mountains for a long weekend...at least, it was supposed to be a long weekend, but we had to cut it short because I wound up in the emergency room with, it turned out, low (very low - 74%!) oxygen levels. Oh, oxygen, my muse - you're everywhere I go and yet I still can't get enough of you! They were worried about a blood clot in my lungs and wanted to do a CT scan there, but I was scheduled for a CT scan at the hospital back home the following week, and you can't have two in a row like that or you turn into an irradiated blob. Or so I've been told. So, we decided to go back to Denver - which is only at 5280 ft compared to our little mountain place, which is at 9600 ft! - and I just had to start wearing my oxygen again...and I'm still wearing it when I walk around or exercise. I have a meeting with the lung and breathing people next week, so hopefully we'll get to the bottom of that little medical mystery soon enough. 

At least we know the breathing issues are NOT from cancer progression or a rebound of the pneumonitis (phew!). I had a CT scan on August 7th and it was good news! The new drugs are working well - my lung lesions actually have shrunk and cavitated (hollowed out in the middle, signaling that they're dying, which is terrific), my pneumonitis looks MUCH better than it did at my last scan, and the liver spot is very tiny. AND my CEA number was halved yet AGAIN - at this point it's almost in the normal range. Yaaay, medical team! Yaaay, poison running through my veins! Yaaay for drugs that cut off my blood supply (Avastin)! 

The bad news is that the drugs helping keep the cancer under control have side effects that are making treatment difficult. Although the proteinuria problem I mentioned last time has somehow magically resolved itself, my platelets continue to act up, and now my bilirubin (indicator of liver trouble) levels are high. Since all of my other liver function tests are totally normal and we already know that my platelets bounce around due to ITP, most signs point to chemo as the root of the problems. So, two weeks ago they suspended my Xeloda (the oral chemo) for two weeks, hoping that would fix everything. It turns out that it helped with the bilirubin, but my platelets are still on the low side. I'm taking N-plate, though, to boost those little guys, and so after today's appointment (I've been at the hospital every week at least once), they restarted my Xeloda at a lower dose. Weird how happy I am to know that I get to start taking poison again.  Come over, poison! Jump in and swim around in my body! Kill those cancer cells! And if you could leave my platelets alone, that would be great.

Side effects from treatment, by the way, are a real bitch. There's just no other way to say it. As if it's not enough that cancer patients have to worry about the disease and the havoc IT wreaks on our bodies, the possibility of progression and mortality, and so on. No. We have to struggle through a seemingly endless array of issues that treating the disease can create. Here's a partial list (partial because it's off the top of my head and I'm sure I'm forgetting something important) of side effects that have arisen for me over the course of the last 2 1/2 years:

nausea

vomiting

constipation

diarrhea

hemorrhoids

ITP

low white blood cells

anemia 

a bunch of other low levels in my blood 

a transected IVC

neuropathy

sleepiness

sleeplessness

migraines

headaches

bruising

hair loss

improperly healing incision that forced me to wear a wound-vac (that's the least disgusting picture I could find - but note that I had to carry the "therapy unit"around with me, and have a nurse come to my house to change dressings every two-three days) for 6 weeks

bone pain

body aches

broken ribs

pneumonitis 

reduced lung function - creating what appears to be a long term relationship with my oxygen machine

mouth sores

peeling hands and feet

That's all I can think of for now! Something to note, though: most of these symptoms are invisible to most everyone. Sure, people get suspicious when I'm wearing oxygen or when I was carrying around my wound-vac or my chemo pack, but the sleep problems, digestion problems, headaches, body pain, broken ribs, anemia, and so on - no one sees it or even knows that it's going on, unless I tell them. Even my hair loss, thankfully, wasn't really noticed by most people - I cut it really short when it started coming out in handfuls but what can I say? I have a LOT of hair, so only my family and my hairdresser could tell the difference. 

Fun stuff, isn't it? Here's the real kicker: I'm grateful for it all.  Despite these inconveniences, the fact that I'm here to even make a list for you today makes it all worth it. It all really IS in the name of love - love for my children, my husband, my family, my close friends. Love for the beautiful, beguiling Earth. Love for life - my life! - in all of its uneven, chaotic glory. 

Gratitude is a beautiful thing.