How much hope?

So I know it's been a couple months since I last posted. And I know my last post was a real drag. I'm sorry about that. A lot of people told me it made them cry. It made me cry too. In general however - my feelings about it all haven't really changed from that last post unfortunately. I still feel like I'm dying. But what has changed is I've been there and back to the National Institute of Health (NIH) in  Maryland, and I'm scheduled to go back again on 6/12 for surgery. So that's new.

There's seriously a lot going on in our life right now ... like A LOT. Like holy shit - are you serious - I need to call TLC and sell our story to them kinda A LOT. You can't make this stuff up because if you did no one would believe it to be plausible. So let's sidebar for a second to allow me to rant a little bit.

ahem.

I can't remember if I've used this metaphor in the blog - but if I have then you'll remember and forgive me for the repetition - and if not then it's new! Yay. Ok so sometimes ... when I'm trying to visualize a way to describe what it's like going through all of this ... the image that comes to mind is me on a cliff. A huge pane of glass separates me from all those I love and it extends in all directions so I can't walk around it or go over or under it. On the other side of the glass is my family and friends ... my children. For the most part ... the big glass pane stays where it is. But every now (about every 6-12 weeks) it threatens to move. And if it moves ... it pushes me closer and closer to the edge of the cliff. It takes away the amount of ground I have to stand on ... and it doesn't give it back. Once it gains ground, it keeps it. And my family and friends stand on the other side of the glass watching helplessly as the amount of ground I have to stand on slowly disappears.

Sometimes the glass pane doesn't move for a while .. a couple months. The first time it appeared it didn't move for a whole year. And we all relaxed a tiny bit and lived our lives as normally as we can ... Sometimes I can get comfortable on my little piece of ground and I think it's OK ... I think it's enough ... I can be happy with this little bit. I gain a bit of confidence ... falsely.

Because then the glass moves.

And what I want people to understand through this metaphor is that I'm not the only one suffering in this situation. Yes - I'm the one being pushed closer and closer to the edge of the cliff. But the people on the other side of the glass ... my husband, my kids, my family ... they are suffering just as much. They are watching this horrible thing happen. They can't turn away because of their love for me ... and they can't do anything to stop the glass from moving ... from existing. They can't switch places with me, they can't endure for me ... they can only keep me company ... and watch.

Can you imagine that weight? Can you imagine what that kind of uncertainty would do to someone's mental health? Watching someone you love so much be pushed toward their death and you unable to intervene in any way. The unrelenting stress and intensity of anticipation that those who love me carry on their shoulders each day is unlike anything else. The rise and fall of hope and despair, hope and despair ... sometimes just despair after despair after despair ... It's like watching someone you love be tortured. And you can't do a damn thing about it but watch and tell them it's going to be OK.

On top of this ... we also have to live our "normal" lives that need living - that require living. Earning income ... grocery shopping ... get oil changes on our vehicles, mowing the grass, walking the dogs, picking up the poop, paying the mortgage, making dinner, exercising, dealing with insurance companies, scheduling doctor appointments - cancer and non-cancer related appointments ... and oh yes ... be parents to two young children who tantrum and need stimulating engagement so they continue to grow and develop into intelligent, kind and decent human beings. Lunches need to be packed, diapers and potty training and bedtime stories and shadow puppet shows and making sure the tooth fairy shows up ... and pre-school graduation.

Any single facet of this oh so crazy complicated life is enough to break even the strongest person down. Combine them all together and seriously?! WTF. But it happened. The combination has caused a mental break. So now the layer of mental health treatment and management has been added to the list of shit that needs to be handled.

And then we really say W.T.F.!!!

I can't tell you how many times I've looked up into the sky and pleaded for a reprieve.

End rant.

And so - in a way ... this brings us back around to what the hell is going on. And that is - cancer hits the WHOLE family ... HARD. It's never just the patient that's tortured. It's the whole damn family.

Since my scans in March where it showed "mixed" response - some tumors responding, some not, some new ones appearing ... I was granted one more month of waiting. I told my doc I wanted to see what happened. She said OK. We can drag our feet a little before starting the next treatment. So I got one more of the same treatment in April, and we scanned again shortly thereafter. I hoped a tiny bit that things would show something different this time - but I knew deep down that the likelihood of that happening was slim. And that deep down part was right. It just showed more of the same of what we saw in March. Minor changes all around, in all directions.

During this time, I also reached out to a clinical trial team. The trial itself is run by Dr. Steven Rosenberg. He's evidently a big deal. I didn't know this when I started. But he's kinda the guy who's been leading the charge in the field of immunotherapy and using people's immune systems to attack their cancers. I emailed them not expecting a response as quickly as I received one and after reviewing all my scans and reports, they wanted me at NIH in Maryland for screening. It was that fast.

Come here often?

"We need to run some labs"

I went out to NIH for screening and in 2.5 days they did a whole bunch of bloodwork (like 12 tubes of blood), a chest x-ray, a CT scan, a brain MRI, and pulmonary function tests. I met with the trial team, the attending doc on the trial, as well as the thoracic surgery team to discuss how they were going to remove the tumor, a wedge section of my lung and part of the lining of my chest wall. And then I flew home.

Talk about a whirlwind of information. I don't think I even started to process the information until I got home - which manifested as not being able to sleep the first two nights home and an intense pain in my back and chest and led to me breaking down in the bread isle at the grocery store with Mike and the boys because I was just that exhausted on all levels.

The trial itself - for me - will be a chance, at a chance. They won't even know if there will be anything to work with until after they get the tumor and my T cells together in a petri dish. They're going to take a tumor from the lower portion of my right lung (which ultimately means they have to do a wedge resection of my lower right lung because they can't just remove the tumor itself ... that wouldn't be very neat for stitching together), and they're going to harvest my T cells, through a procedure called apheresis. (I could go into all the craziness around both of these procedures individually, but I'll spare you as this post is already long.) Once they have that - they're going to slice, dice and sequence the tumor for any mutations, and then set the T cells on attack - to see if any of the T cells can recognize and "react" to the mutations. If there is any reactivity between the two, then we'll move into the next phase of the trial which is growing those reactive T cells into a small army. If there is no reactivity - then that's it - nothing more to do.

In the meantime - I come home after surgery and heal up a bit more - and then continue on business as usual. I will likely start chemo in an effort to get the tumor burden in my liver down. Depending on whether or not this particular chemo drug works - will determine if the glass moves.

If I'm so lucky as to have a small T cell army grown for me, then at a point in time when it is right - meaning my "business as usual" treatment at home is not working, then I'll go back out to NIH for the treatment phase of the trial. Simply put - they'll wipe out my current immune system with chemo and infuse the new T cell army immune system into me - pump me full of other meds to make sure the T cells remember they're in my body and not in a petri dish - and then watch what happens. The goal is for those T cells to begin attacking the other tumors in my body. This is what they're calling a "living treatment." It's using your own cells to fight your cancer, which was born of your own cells as well. This could do nothing ... it could do something, but that something not last for very long ... it could clear out all the cancer ... it could kill me ... or it could do a combination of all of this in some fashion. Thus far, for metastatic breast cancer, they have 1 patient who has been 18 months cancer-free as a result of this process. One.

So hopefully you understand why I say a chance ... at a chance. I won't even know if any of the advanced phases of the trial are available to me until they get the cells under the microscope. All of which takes a couple months of testing, and a small sacrifice from my lung.

So for now, I've been off treatment since mid-April, as a requirement of participating in the trial. I will continue to be off treatment until probably the end of June. I'll pick up chemo mid-summer, and hope for the best. That's all we can do at this point. I'm of course looking at other trials and other meds and anything else that I can as a feasible treatment. I'm still working full-time and being mommy and wife and daughter and sister and friend. I'm still riding horses as therapy. We're still trying to give our boys as normal a life as possible - as much as possible. We're swimming the hot summer days away (and dealing with our first bout of swimmer's ear) and cheering at the boys' end of year school program ... and I'm grinning like an idiot with pride while simultaneously wiping tears away while I ponder if this will be the only graduation ceremony I will ever see.

 

 


I don't know how much hope to have in this trial, or in this new chemo regiment. But I have some.

"Hope is the thing with feathers,
That perches in the soul.
And sings the tune without the words,
And never stops at all."

--Emily Dickinson


UPDATE 6/4/2018:

This is an article about the exact trial that I'm involved with. This is the ONE patient that I mention that has found success with the treatment.

https://www.npr.org/sections/health-shots/2018/06/04/615673436/therapy-made-from-patients-immune-system-shows-promise-for-advanced-breast-cancer