Recovery, Radiation and Chemo

It starts the same way every time. I run my hands through my hair and suddenly there's a lot more than "just shedding" wrapped in my fingers. It's a knowing when you see it in your hands. A heaviness that settles in your chest - with a sigh of resignation. You know what's coming, what you need to do to get there ... and yet you still hold out hope that maybe ... just maybe ... you're one of the rare patients who doesn't lose all their hair from chemo. Unlikely ... but you hope anyway.

And then you take your first shower after it starts shedding. And handfuls and handfuls of hair are wrapped, woven and intertwined in both hands ... down your back, down your chest, on your arms ... and you do everything you can to lean back and let the water just rinse through your hair and not on your body so you don't have hair stuck to you everywhere - and you're only mildly successful. If anything you've just contained it to your back. The drain is completely covered with fallout ... and all you can do is just sigh.

And this happens every - single - time - you - shower. Gobs and gobs of hair to the point where you wonder if you even have any left on your head and you're scared to look in the mirror when you get out. Every single time you brush your hair - it falls out in unsettling amounts. Every time you touch your hair - you get covered in fall out. You do everything you can to not touch your hair once you've got it how you want it - combed over in various areas to hide the thinning. You pray for non-windy days and you try to sleep with minimal movement so as to not have to comb it excessively in the morning and deal with more fall out. 

This is where I'm at right now. Gobs of hair and a thinning pixie cut. Those tiles in this picture - each little square is 2x2 inches ... just to give you an idea of how big that ball of hair is, it's sitting on a 6x6 inch square.

I started the second cycle of my new chemo combo last week - Eribulin and Herceptin. One cycle of Eribulin consists of 3 weeks, where once a week for two weeks you receive the chemo, and then the third week of the cycle you have "off" and you recover. And then you repeat, every three weeks. At the end of this second cycle, we'll scan and measure whether or not this is working. And like all the times before - if it's not working - I move on to another treatment on the very short list of available treatments left. If it is working - I get another 3 months before we scan again.

But what about the trial? Oh yes. I haven't forgotten. It's running in the back of my mind every day. One woman currently still in an extended remission from her body's own amazing TIL cells. One amazing metastatic breast cancer patient ... one amazing response ... one amazing mystery that they're still trying to solve and then replicate in other patients.

I'm still in the trial. I'm just now waiting for the Big Question to be answered - is there any reactivity between my TIL cells and the tumor they removed? They're still testing. That's the latest update as of yesterday. Still sequencing the tumor and still testing. In the meantime ... I go back to treatment as usual, while I wait for this chance at a chance.

And yes - if you caught that - I did have surgery in June, which is how they have a tumor on which to test. I had a "partial wedge resection of my lower right lobe with a partial pluerectomy and pluerodesis." In essence - they removed a section of my lower lobe in my right lung that had a tumor, they removed some of the lining that is in between the lung and the interior of the chest cavity, and they scratched up any lining that was left, so my right lung now sticks to the interior of my chest cavity. They did this last part to help deal with the fluid that was continually building up in my lung and causing a partial collapse. I had 3 chest tubes after the fact, 3 incisions and was in the hospital for 9 days. Gotta love a federally funded hospital for that - no rush to discharge you until the doctors feel you are absolutely ready to go - no push or deadline because of what insurance will only pay for. It was really nice (and how healthcare really should be). And when it was time to leave - you can bet Mike and I jumped on the first flight out of there as soon as we got the green light. I was done being in the hospital. And Mike was done sleeping on a little convertible armchair. And you bet your asses the flight home was in first class.

 

As far as surgery and recovery went - it was alright. I had minimal pain overall and what I did have was managed well with meds. They maneuvered everything in between my ribs - surgical instruments, cameras, tissue, etc. The largest incision is where they actually removed the lung section. The smaller two is where the chest tubes were coming out - 2 in one, 1 in the other - pulled out of my chest, bedside. It looks like I got shot and was in a knife fight. But again - overall the pain was minimal. What really hurt was my T3 vertebrae and there was nothing I could do to treat it until surgery was over and I could get back to treatment - and that's really why I was taking the pain meds. All in all, I was off of treatment for 2.5 months just to be eligible for surgery for this trial. In that time, overall cancer growth wasn't as bad as it could have been - but my T3 for sure grew more painful everyday.

A few days after we got home from Bethesda, I was getting radiation treatment. I've never been so happy to be radiated. Within a few days the pain was gone. I did 10 sessions of radiation to my T2-T4, as that's how they treat the vertebrae ... and shortly after rads was done, I started my 3rd chemo, my 5th line of treatment, in the metastatic setting, in 31 months.

Treatment line #1 - Ibrance and Letrozole, 11 months
Treatment line #2 - Taxol, Herceptin, Perjeta - 6 weeks
Treatment line #3 - Xeloda and Herceptin, 7 months
Treatment line #4 - Verzenio, Faslodex and Herceptin, 4 months
Treatment line #5 - Eribulin and Herceptin, TBD

That's how this works remember. I keep jumping from one treatment to another to another - in an effort to string life together. I've taken two breaks during this time as well - each about 3 months in length. And each time - there was moderate growth and progression in the absence of treatment. In addition to 5 lines of treatment, I've had 4 biopsies/procedures, 4 surgeries, 2 implanted medical devices, 10 surgical scars, a neck brace, a near complete collapse of my right lung ... I've lost both my breasts, both my ovaries, and now part of my lung ... and I've lost my hair 3 times (4 times if you count early stage treatment).

Talk about feeling like a science experiment. 

 But if it's the only way to get where I am today - I'd do it all over again - in a heartbeat.

Camden starts kindergarten next week and I'm so freaking excited to see him off - I can't stand it. I'll likely cry and be big bawling mess - but who cares - my baby is starting school. He's solidly obsessed with Jurassic World and we'll surprise him with a JW backpack, lunch box and water bottle. Nicholas is solidly entering the terrible 2 / terrible 3 territory and is giving us all a run for our money. Inexplicable tantrums that make Mike and I look at each other and just laugh or shrug or go "WTF" ... followed up by the sweetest expressions like "Mommy you're my best friend."

These are the moments I fight for. This is why I endure so much. I just want to see them grow up. I want to raise them into decent, kind human beings - who have a happy life. I would endure three times as much as I have already - and more - for the chance at growing old with Mike. It's all I want to do. So I keep on, keeping on - living for right now, openly embracing the present and just going one step at a time. I plan only so far as I can with my treatment and scans - and that's enough. I look forward to things - cautiously - and don't set my hopes too high for any one thing - and I try my best not to get upset or disappointed if I can't do something. Because honestly - so long as I have my time with my family - that's all I could ever want or need.