STOP THE PRESSES! New biopsy shows extremely successful treatment now an option.

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That second green bird is me hearing the news that my cancer has become HER2+.    A little over a year ago,  you might have seen a lot of news about a new breast cancer treatment that adds 15 months of survival to a breast cancer survivor’s prognosis.    It’s Genentech’s Perjeta, combined with Herceptin and chemotherapy.

Monday’s biopsy shows  my cancer has decided to change into the kind of cancer that RESPONDS to this treatment.

Oh yeah!  Oh yeah!  That’s me!  Oh yeah!

Here’s the another great piece of news.    Genentech, the company that created Perjeta, has a co-pay program.  So if my insurance doesn’t cover Perjeta (which, with this clinical record of success, they SHOULD, but it might NOT), Genentech will cover my expenses.  I just pay a small $25 co-pay.

http://www.gene.com/media/press-releases/14574/2014-09-28/genentechs-perjeta-regimen-extended-the-

Novartis, the company that created Affinitor, does this as well.  Novartis’ program allowed me to use Affinitor and it was the first treatment to work against my cancer.

So I’m feeling a bit pro-pharma this morning!!

I’ll post more details soon.  Just wanted to get the word out.  Looks like I might be around awhile!

🙂

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Death Leave?

OPTION 1 – “There’s a high probability that I have less than six months to live. I have been told by oncologist to stop working. I won’t be teaching Spring quarter. But today I’m feeling great. How are you?”

OPTION 2 – “Great! How are you?” (Say no more and ignore nervous quizzical look on inquirer’s face)

OPTION 3 – “I’m doing really well today, how about you? But if you’re interested in how my disease is progressing, please feel free to read my blog at http://www.thecolorofhopeblog.com “  (I hand them a card.)

 

There’s a superstitious part of me that fears continually repeating “there’s a high probability that I have less than six months to live. I have been told by oncologist to stop working.” It’s as if the chant of the possibility can make it a reality.

But I also don’t like not telling people what they want to know. I hate that uncomfortable silence people settle into when they don’t know how to act or even feel around me. Knowing how I am helps them know how they can be. It helps me connect.

My blog helps a lot. It clears away about 90% of the inquiries and helps people know where I am. I want people to know where I am. I want people interact with me, to feel comfortable asking me genuine questions.

The entire experience continues to be quite funny in some ways and surreal in others.  I like sharing.

There’s really only one thing that bugs me.

When I was diagnosed with cancer the first time, in 2008, I became close to a woman with stage IV ovarian cancer. I remember being mystified by how long she chose to work. I thought *I* would take time off. *I* would want to focus more on my family and kids. I would travel. I would write. I would. I would. I would.

I was obnoxious. And unless you really do have a less than 6-months to live prognosis or have had one at some point in your life, I don’t want to hear about what you would do. I don’t care if you’re a hospice volunteer and walk people through their deaths on a daily basis, you don’t know what you would do if you were me. You don’t know what you would do if this were happening to you.

But now I do know.

And it’s rather surprising. I like just being. I like just living. I like eating and swimming and cuddling. I like thinking and dreaming. I like binge watching TV and writing letters by hand.

Working was wonderful and being with my students still gives me a burst of energy every single day. But when a treatment or diagnosis change comes along, it becomes an incredible distraction. So when I’m “off work” and hanging with my best friend, I go swimming, I go shopping, I read, I go out to eat, I talk and I laugh.

But when I’m home, I sit in front of a screen “working on grading” and don’t grade.

I have always been able to waste a lot of time in front of a screen not grading.

Now wasting time online while not grading for work has become an unhealthy addiction. And with the possibility of extreme health or treatment changes in the near future, it’s time to stop.

My first response at really stopping work was happiness. I was imagining the freedom from obligations. The freedom to sleep, exercise, eat, love and reflect at will, without the undone avoided work hanging over my head.

But the next day I was horrified. There’s a reason I’m not a stay-at-home mom. I hate housework. I hate the constant micro-interruptions of being everybody’s problem solver. I don’t like cooking. I don’t like spending all of my time driving kids around (but I like it sometimes).

That stuff’s not getting done very well right now because, well, neither I nor Francois really like it. So we get involved with things that take us out of the house. We eat a lot of take out and microwaved food. We travel.

I am not a stay-at-home mom. I am a dying mom. I value and respect the work done by stay-at-home moms. They are nutritionists, project managers, cooks, counselors, coaches and coordinators. This kind of tracking and maintenance requires a tenacity and diligence that does not come easy for me. It wears me out. So the work done by stay-at-home moms will continue to go undone at our house.

I need to hire a housekeeper or train my kids better before I stop working.

And that, my friend, is the biggest thing on my mind today. Not death. Not mortality. Not the meaning of life.

It’s all about how often the carpets are going to get vacuumed.

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Miracle? Not so much.

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The miraculous Reiki recovery was AWESOME!

Until I got my next Neulasta shot and that inward curling decaying leaf feeling, myalgia and heart-squeezing pain jumped right back into action.

My emotions and energy still feel different. But the pain and fatigue was back. And now it’s clear that it’s not my chemo, it’s the addition of the Neulastra to the chemo.

But that’s all OK, because it turns out the chemo is not working anyway. Pet Scan shows progression. Tumor markers are way up.

So it’s time to move on. I’ll be taking another chemo, Xeloda, while we get a new biopsy and do a genetic analysis. We’re going to see if there are any genes in my cancer that are known to respond well to any cancer therapies. Could turn out that a cancer therapy for colon cancer works with my breast cancer.

We’ll see.

There’s not a huge success rate. But it’s really really interesting. And by adding my cells to the data pool, I’m adding to the research data, doing my little bit for the future.

And it’s just nice to be able to tell friends and family, especially the kids, that we are getting the best, most modern 21st century treatment. We’re so lucky to live here and to have such affordable access to this treatment.

That’s cool.

There’s one study I think is really interesting. It’s in Maryland and I can only find evidence of one breast cancer patient even making it into the study before her progression got too bad. The process used in the study takes a long time. It doesn’t look like a match for me, but it sure looks like a cool avenue of research.

https://clinicaltrials.gov/ct2/show/NCT01174121?term=%22TIL%22+and+%22NCI%2 2&recr=Open&rank=2

They take your immune system and set it to attack a sample of your tumor. The parts of your immune system that actually take up the attack are bred into a small army and then they replace your current immune system with one that includes this new tumor attacking army. Cool, right? Let’s just hope one of these chemos or trials works long enough for this very cool thing to show that it works. So far, breast cancer hasn’t been great with this. Our tumors are just too varied and widespread.

Anyhow, I do really like collecting data about myself. It appeals to my narcissistic nature.

Miracle

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It’s not my diet.  If anything, I’ve been eating worse.  When the girl at the Burger King drive through recognized me and then joked about how fast she would be putting on the pounds if she ate there as often as I did, I figured I should cut it back a bit.

It’s not a new optimism.   I’ve been spending the last few weeks reconciling myself and my family to the fact that while a year+ isn’t an impossibility, there’s a real possibility of a really short timeline in my future.

My pain has become more significant, and importantly, more anxiety producing.   My liver felt inhabited by roaming lights, moving shadowy pains.   I have had sharp bone met pain in a rib and in the center of my spine.

Fatigue has been life altering.  Getting up to go to work the day after chemo…It’s like waking a child from a dead sleep in the middle of the night.  Walking up stairs makes my thigh muscles bark with the effort.   In previous chemo cycles, the fatigue got progressively worse, the second dose outshining the first.  By day 15,  my fatigue turned into a heart squeezing pain when I rose quickly from a sitting position or climbed stairs.

I’ve done two treatments for two cycles.  Cycles are supposed to be three treatments.  (Low blood counts and a spontaneous family vacation to the Southwest interrupted them.)

I didn’t think I could do a three treatment cycle.  And with my rising tumor markers and the increasing fatigue and discomfort, I was feeling pretty negative about this treatment, overall.

And then Reiki.

The first week the pain left.

The second week the light and energy came.

Energy became something the flowed through me rather than from me.

I was certain my blood counts would be sky high at yesterday’s chemo.

If not the lowest blood counts I’ve ever scored, they were pretty damn close.

Low blood counts once made me feel so poorly I couldn’t raise my head from the table and my husband ended up calling 911.

Today’s counts:

WBC 1.4   (Normal 3.4-10.8)
RBC 2.69  (Normal 3.77-5.28)
HGB 8.7 (Normal 11.1-15.9)
HCT 27.2 (Normal 34.0-46.6)

And I feel GREAT.  I could swim kilometers today.  I climb stairs with no breathlessness or chest squeezing.  I don’t need to rest my head in my arms for a second after carrying a couple of gallons of milk into the kitchen.

Maybe it’s the chemo finally kicking in and my liver suddently reverting to a state of health.  Maybe my new energy is a new science induced spontaneous return to health.   Next week’s PET scan will tell us that.  That would really be great.

But here’s the thing.

If the PET scan shows progression next week, my new energy must be coming from somewhere else.

Either way, it’s pretty damn miraculous.

Wow.

Just wow.

 

 

Reiki

So I’m not a poet.   But my very first sessions with Reiki were so moving I felt a need to try and capture the experience.

Here’s the amazing thing.  I feel GREAT.  Better than I have in months.  I have energy.  My pain has almost disappeared.   I can get things done with little effort.  It’s like suddenly my natural state is in movement and I have to make an effort to come to a still point.

Reiki? New meditations or prayers from friends?  Suddenly working chemo?

All I am sure of is that I’m really looking forward to my next Reiki session.

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Reiki

Session 1

First there’s the pleasant tingling. Especially in my scalp.
Waves of energy, vibrating emotion, thought, physical pain
It curls and folds, twists and opens
As her hands pass over my head, face, neck, arms, back, front
Touch down
On feet
Grounded
And up, swirling
Red curls back from my mind
Relief is in the space left behind
Blue
Then green

I walk away
Calm water
Broad open sky
Peace
Rolling
Natural
Forward
Movement

Her face is wracked with grief and love.

Reiki

Session 2

Purple core
Doorways open
Solid stance
Hands pull
Float
Coax
Colors sit
Stubborn?
Centered
Hands on feet
Ground
Ground
Orange leaks up
Around the edges.

Hours
later,
in the physical memory
My skull opens
And light pours out

I swim a kilometer for the first time in four months.