Xalkori – polepole ~ breathe

Keep Reading Please!

Yes, I’m doing well. Yes, I know I’ve been blasting you with Lung cancer Awareness information. It’s because I LOVE YOU. It’s just one month. Stay with me here. I’ve something personal to share that you’ve not seen. Maybe it will impact your mind with visions of the power of hope, faith, and medical research. It did mine when I recently read it. It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January 2016. When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief. In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time. I think I was unaware about my actual state. How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good. The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable. Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS:

CHEST:

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma.

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery.

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize.

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring 26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it. Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible. A targeted therapy cancer drug stopped the spread of the ROS1 cancer. When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again. Hope, faith, and medical research. Wow. Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey. I started treatment in one of the premier cancer treatment centers in the world. There, I can participate in clinical trials that are only available in a few places in the country, and unfortunately not accessible to many. Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial. Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

Take care of your body, listen to it, and advocate for it.
If you have a cancer diagnosis, find the best treatment available to you.
Always have hope.
RESEARCH FUNDING IS NEEDED. You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day. Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it. Thanks for reading. Always have hope. Today I’m spending the day with one of the grandchildren. How lucky am I? I say, VERY! Here, finding joy in the everyday every day.

Health Update Sept. 6, 2018

Nothing but smiles! You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver. Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial). “Everything looks good. Your brain MRI looks great!” Wow, what more can we hope for in a visit. Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer. Yes, it is still hiding out in my lung, my liver, my colon, my brain. We coexist in one body. We will for life. But, oh what a great life it is! Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer. Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well. I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition. Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future. Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement. Time for me to pick some peppers and tomatoes, maybe make a little salsa. For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).

First Day of School

Today is the first day of a new school year. And where am I? Making garlic dill pickles and sitting on the deck here at camp, with my feet up, watching the seagulls. Weird. That’s how it feels. Weird. I shouldn’t be home, you see. I should be at school. In my classroom, with my students.

While cancer can’t stop some things (Camp Gramma!), it has stopped me from doing one of the things I love – teaching and learning with children every day. Today is the first time in a very long time that I wasn’t directly impacted by the first day of school. Why, even when I was a toddler, my older siblings left me on the first day of school. Then, I went to school for years. I took a six year break from school while the children were growing, and then spent years with them being in school. While that was happening, I went back to school and became a teacher. From there, I’ve not missed a first day of school. That’s a longstanding tradition. A tough one to try ignore or think of as “just another day”. It’s THE FIRST DAY OF SCHOOL, and it means something to me.

Last year I tried to work 60% time, and I think did so quite successfully until the end of May. I know it was important to me that I be there, and I hope my students benefited from my presence. I appreciated my school administration’s willingness to let me job share. I’m grateful to Andrea for being my longterm sub through my sabbatical and my illness.

So it was, in May 2017, we got confirmation that cancer had crept past my magic friend Xalkori (crizotinib) and we would need to move to the next line of treatment. Yeah, I already knew – we’d been watching the beast creep in, and there were symptoms for a couple months, but now decisions had to be made, appointments were scheduled, “cruise control” shut off. Time to apply for what, in the world of Maine teachers, is called “retirement disability”.

The term “retirement disability” really bothers me. It has nothing to do with retiring, and is about accessing that retirement fund for disability. I wanted to retire on my own terms, when I was “ready”. Retirement should be joyful! I was occupied with completing forms to giving permission to MainePers to access my medical records so that someone could judge whether I was disabled enough to qualify for benefits. It was not the retirement I had envisioned. (I am though very grateful for having benefits to apply for, and access to health insurance.)

Back to today, the FIRST DAY OF SCHOOL. Today, I am joyful on this first day of school. The paperwork stuff (another story) all worked out. I had a wonderful summer of teaching and learning with children all summer. I am here in the place that I love for longer this fall than if I was back to school today. And, even if it’s not every day, I know I will be with children learning and playing, either with the grandchildren or volunteering in my dear friend Kathy’s classroom. It’s the first day of school, and I’m drinking my afternoon tea.

Share this:

Like this:

Share this:

Like this:

Share this:

Like this: