Breathing Room....

The much anticipated December 17th scan has come and gone

The results were good and a great sense of relief has fallen upon my family.

Our lives since October 10^th have been a roller coaster.

To my family it felt like initial diagnosis all over again.

It felt like that to me as well, but at this point in the game, I have built up a robust cancer support network that I didn’t have in May of 2015.

After the initial shock of progression and brain METS I was able to access my network for guidance and support in the next steps.  We had a game plan in place but I was also able to talk to people who have actually had to implement that same game plan. They were able to give me a heads up on what was coming my way next and it was priceless.  

This network included experts in my specific type of cancer that I have seen for second opinions in the last 3 years; this included Dr. Ross Camidge in Denver and Dr. Alice Shaw in Boston.  I emailed both of them about the progression and some difficulties I was having with the new medication (Loralatinib); these 2 Dr’s have more experience with this drug than all others IN THE WORLD, combined. Alice replied to my email within an hour and Ross wasn’t too far behind. They gave me incredible feedbackthat I was able to pass on to my care team at SCCA (there are only 13 ROS1 patients at SCCA in the clinical trial).

I was able to talk to my friend Linnea who was patient #6 in the initial clinical trial for Loralatinib. She was able to talk me through side effects first person; giving me guidance with management and set my mind at ease. My friend Kirk Smith reached out and set my mind at ease about the prospect of radiation to my brain and the difficulties with targeted therapies: been there done that, got a whole bunch of t-shirts.  Aimee Parker took my call and gave me her firsthand experience with cyber-knife brain radiation, which is a big deal but not THAT big of a deal, she reassured me.

The other part of this cancer network is my tribe from Peru. Brothers and sisters that I spent 2 weeks with in November as I worked on reshaping my life after a cancer diagnosis.There is a whole lotta goodness in my tribe, many of them have been to hell and back and some are still occasionally visiting it and in the battle still.  Phone calls, face times, text messages, encouragement from every type of media and communication delivery. Last Monday when I went in for my scans I was accompanied by Regina and my soul sister from Peru Cheryl Weeks.  She is family and she belonged there.

So what do I do moving forward?

I have taken a pretty large chunk of time off from work while we have been dealing with all of this. I never really took any extended time off upon initial diagnosis. I was too busy trying to keep everything “normal” for my family. I only took the time off I needed for diagnostic tests and treatment. This time around, I tried to come back- but the emotional impact of the situation, and a battle with side effects from the new medication - indicated some time for emotional healing, self care, and sorting out life in general was in order. I will return to work sometime around January 9th, recharged and ready to go.My brothers and sisters at OFD have been kind and generous in allowing me to do this.

There is still the powerful side effects from Loralatinib to deal with. My first bout was with psychoactive effects and adverse drug interactions. We had to do a brief hold on the drug for 4 days to wash out and restart. We sorted that out and I thought I was home free and back on 100mg.

Then the nighttime neuropathy set in sometime around November 14th. My hands go numb at night and they throb and burn. We tried pharmaceutical intervention, acupuncture, chiropractic, massage, etc. In the end after 3 weeks of only sleeping on 2-3 hours at a time we stopped the medication for a week. I was getting so run down from lack of sleep that I was becoming susceptible getting sick otherwise, and I don’t need that.

My body was at war with the agent that it needed, to kill the cancer.

Anytime I am not actively doing something to kill cancer, I am stressed out.

After a few days I made peace with it and relaxed.

After a week the symptoms lessened to the point that I could sleep. We restarted at 50mg.
The symptoms have returned but not as severe. I am able to get pretty reasonable sleep.

But here is the thing.... the scan shows that Loralatinib is working.

It is NOT at war with my body.
We are indeed working TOGETHER to kill the cancer.
My lens is a little different after the scan results.

I have to find a way to work with the drug.

There is a give and take, we are partners, and as in any relationship it takes time.

So we will continue to work together, we will sort it out.

Perhaps I will be a little more tolerant of shorter nights because of neuropathy, and maybe eventually as my body adjusts, things will settle down.

Anyways...

The Browns are set to have a happy and joyous holiday season.

Lots of time in the mountains and with family and friends.

We are going to live the moment.

Can’t change the past, no reason to stress about the future.

Get busy livin' or get busy dyin'...

3 months till the next scan.

Breathing room.

I am a Warrior.

I am a Thrivor.

I am the Exception.

I choose the Miracle.

Prayer requests:

Loralatinib continues to be effective against the cancer.

Neuropathy goes away.

Restful sleep and peace for my whole family.

Jim

#holdfast