Really scared and really unsure

Sometimes - you don’t realize how much something hurts until you touch it.

Or until you know it’s there.

The trail failed. 17% progression in tracked lesions ... under the 20% threshold but alas ... 2 new spots appeared in my liver, a new spot on my psoas muscle and that weird lump on the back of my mid-right rib cage ... cancer too. Those new spots mean I’m out.

The docs at MDA delivered the news with an emphasis on getting on chemo right away. My liver is in a pretty serious state and getting on some kind of chemotherapy right away is in my best interest. They have a couple trials that may be an option but they’re wary to recommend them - I can see it. They think it’s best I get on chemo right away. That was 1/2/2019.

I was pretty devastated when we left. I’m pretty devastated now. Still.

I got in to see my local oncologist immediately that following Friday. She’s recommending a chemo, gemzar, plus a Her2 drug I’ve had before for more than a year, Herceptin. It’s a “safe” combo that she can recommend. I discussed with her why can’t we change the Her2 medicine to another one - it’s likely Herceptin has run through its efficacy. Kadcyla is what I’m thinking of ... however Kadcyla is only approved as a single agent. Not for combination. For me - I can’t do that. That’s too many eggs in one basket. Kadcyla only targets cancer cells that are positive for the Her2 protein ... and yes, I have a colony of that. But the initial colony was hormone positive, her2 negative ... and that’s still what the majority of my biopsy pathology reports show. Despite the hormone receptors likely being mutant and those mutations indicating resistance to anti-hormone medications, I still can’t ignore them completely and only focus on the Her2+ cells.

This is what makes my situation so tricky. Current treatment standards - current medications are approved based on tumor of origin (in this case breast) and pathology:

A) Hormone positive, Her2 negative
B) Hormone negative, Her2 negative (aka triple negative)
C) Hormone positive, Her2 positive (aka triple positive)
D) Hormone negative, Her2 positive

There are approved drugs, and drug combos, for A, B, C and D ... separately. But when you’re like me and have cancer that’s both A and D ... you can’t just use drugs that are approved for type C because I have two different groups of cells. It’s not the same as C. What drives growth in C is different than what drives growth in type A or type D. And my docs are very limited in what they can combine between groups A and D ... essentially it’s only Herceptin they can use from type D to combine with most things for treating type A. And when the cancer of type A is resistant to anti-hormone treatments, that eliminates some more options. It basically leaves chemotherapy.

My other oncologist in San Antonio is a little more willing to push the envelope. Despite no formal safety studies being done, she's recommending a combination of anti-hormone therapy (Afinitor and Tamoxifen) plus a different Her2 drug called Kadcyla (the one I was thinking of). It's not a common combination at all - perhaps not a combo that's been given before at all outside of clinical trials. But as she said when I met with her, "desperate times ..." And I have to agree.

She is also screening me for a new trial that targets something called "Her3" - it's different than Her2, but it can be effective against Her2 AND it's for cancer that is type A above. So - if my biopsy tissue comes back positive for Her3, this trial could be a really nice combination for my difficult, multi-clonal disease.

But for now ... I've been waiting - without treatment in my system. It's been 16 days. And I've felt all 16 of those days.

My liver is enlarged. The tumor burden that exists in the right lobe is my liver is ... a lot. Multiple tumors that are roughly 7 to 10 cms in size (golf balls) are taking up space and pushing my liver out of place. It's low in my abdomen, pushing on my stomach, pushing on my diaphragm, my rib cage ... everywhere. It hurts to sit for any length of time, it's uncomfortable to eat more than a little bit at a time ... it hurts to lay certain ways ... it just hurts. And I didn't realize how much it hurt, and how enlarged it really was, until I took a pain med and realized what it felt like to be absent that pain. The pain is so dull, yet intense, and so constant - it's like you don't know how severe it is because it's had a very slow time to creep up and culminate. I've been tolerating little increases in pain every day for the last year, but because the changes are so slight - I simply adjusted. And then I took a pain med - and OH. That's what it feels like to feel better.

And so while I wait for labs to run their tests to tell me if I'm in the trial or not, I can't start any new standard of care treatments. Before each trial there is usually a "wash-out" period where they want you free of any medications for a certain period of time before starting their trial medication. If I start a new standard of care medication right now - I'd have to restart this clock if indeed I qualified for the Her3 trial. And so I wait.

I wait with an intense fear that I'm approaching liver failure every day.

I wait with an intense fear that this new trial, or this new standard of care regiment - won't work. That I will simply continue to lose ground in my liver until it fails.

If my liver fails ... I can't process hardly any of the chemos that I have yet to try. Most of them are processed through the liver. And if I lose my liver ... well ... that's kind of it.

And so I wait. And I continue to wait. I run through the "If you're watching this, it means I'm dead ..." video script in my head. I have yet to write it but I've already worked through the outline. I'm mentally cataloging things that I want to distribute to my family and friends - my wedding dress, my engagement ring, my other meaningful jewelry ... I'm crying every time I watch Camden do something that I can envision him doing as an adult. Tonight it was watching him and Mike crawl up into the attic and put Christmas decorations away. He's almost 6 ... but I can see him doing it when he's 16 too ... and it breaks my heart because I just don't think I'm going to be alive to see it. I am shaky on whether or not I'm going to even see Christmas 2019 ... and then to think I likely won't see Nicholas start kindergarten ... my heart breaks over and over again - everyday.

I had so much hope for this last trial. So much hope. And then I realize how cruel a thing hope really is. The duality of hope is a vicious thing. On one hand, it can't help but seed itself in your heart. You can't help but hope that maybe "this" will be it. It's addictive. It's easy to do. And it keeps you going - it fuels you in times of despair and you're so thankful that you have it - because it pulls you up out of some of the deepest, darkest pits of despair. It's a true lifeline.

But at the same time - when the treatment doesn't work - when the disease takes over more and taxes your body even more ... when you're in pain, and worried death is only a few months away ... hope hurts. It brings with it terrible disappointment. Hope is stripped away ... and leaves you bare inside ... and makes you face your very real mortality each and every time a treatment no longer works. It makes you accept imminent death repeatedly. It traps you. The glass wall moves and you slide closer to the edge of the cliff.

And yet you still hope. That perhaps this time - this next time - I'll have more time. Perhaps this next treatment will give me a longer time between medications ... perhaps it will kill the cancer that's taking over my liver ... perhaps it will kill the tumor that's sitting next to my heart.

Just maybe ...

And so we hope again - once more. Because it's all we can do at this point.