remission – She-ra Hikes

I returned to PCT Days last weekend….things started going wrong just after PCT Days last year…I’m still chairing the Oregon Trails Coalition, so was helping to spread the **Fund Trails** message with my friend Matt Ruddy from Trailkeepers of Oregon. Speaking of…we are collecting trail stories from people all across Oregon as part of a campaign to celebrate the many ways trails show up in our lives—and why they deserve ongoing public funding and support. **What’s your trail story?**

I know I’ll be feeling the echoes of my Dad’s passing for quite a while, and paired with my healing journey, it’s even more of an imperative to get out on the camino to walk out a lot of these emotions. Walking is the way I process the world, walking and writing together are the ultimate…so I’m excited that I have both on the horizon.

Back to the world of cancer stuff, I’m on the maintenance schedule now that includes monthly labs and meetings with my oncologist. I got my labs done this week and it still shows low white blood cell counts and low platelets…these are side effects of my daily cancer med, so it’s to be expected, but it also means that my immune system isn’t as robust in defending my system from infection, but I started a new treatment regimine this week, prescribed by my naturopath oncologist: Mistletoe!

Yep, it’s the christmas kissing plant, or in my case, an immune cell super-power upgrade. Here is what mistletoe will do for me:

Help my immune system to recognize and destroy tumor cells by activating tumor-killing cells such as macrophages, dendritic cells and natural killer cells. As cancer progresses, cancer cells mask themselves from the immune system by hiding their cell markers. Mistletoe helps to reverse this progress, exposing cancer cells to the immune system.
Blocks the ability of cancer cells to build new blood vessels
Repairs DNA of cancer cells, making them less aggressive
Damages cancer cells’ cell membranes and structure
Promotes immune destruction of cancer cells
Blocks production of proteins that promote growth in cancer cells
Blocks ability of cancer cells to invade new tissues
Anti-inflammatory, modulates pain response

The fun part? Giving myself shots. The treatment comes in self-administered injections several times a week, and since the medication doesn’t have to be refrigerated, it should be all good to take to Europe with me in a few weeks.

So I have this new med, and when I return from Portugal, I’ll start another new med, Zometa, which is an infusion that I’ll get every three months to strengthen my bones. The internet tells me that Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures. So this will help me recover from the swiss cheese effect of the cancer growth on my bones, and it will be doubly useful because I am hovering around menopause, which also can lead to osteoporosis. I’ve been advised to avoid high-impact activities because of my increased fracture risk, and not that I’m going to suddenly start racing motocross or anything, but I’m hopeful this will lessen the risk if I do try things this winter like cross-country skiing. I’m probably still going to avoid downhill skiing for now (sob).

So even though I don’t have any active cancer, I’m still seeing doctors like it’s my job. Maybe this will lessen with time? Maybe? Because I’m on monthly labs and periodic scans and my medication is delivered by timed doses each month, this means I really can’t be away from home for more than a few weeks for the foreseeable future, and when I come off my anti-seizure drug this winter, I won’t be able to drive for three months! It’s hard to see a return to normal; this is a new normal.

Speaking of the new normal, I’ve been having trouble wrapping my head around how to live my life now and how to make decisions now. I am in that in-between place where I don’t know what going forward looks like. In my immediate future, I have Portugal, but after that???

I had started accepting that this may be the end, that it may be my last year or so, so I decided to live hard right now and do all the things. But when I got the scan this summer showing me that I didn’t have any active cancer at the moment, suddenly I could see a longer life… a future longer than a year at least, so does that mean I start saving for retirement again? Can I even entertain the possibility of retiring? All the while, I still need to make it to 5 years…and the odds aren’t quite in my favor, but then again, I’ve always excelled at exceeding the odds and have had good luck trusting the world. Do I stop planning and live now? Or plan just the next year and go big?? Or do I plan to be alive in 10 years? 5 years? 3 years? Do I start my business again? But I’ve also always wanted to write a book, so why not give that a shot when I have time (or maybe not)?

I don’t know friends. I guess I’ll start by going on a long walk.

I’m officially changing the name of these updates from “Cancer update” to “Life update.”

Why?

Well, it’s more forward thinking, I’m not giving cancer the spotlight anymore, and because my last scan showed NO EVIDENCE OF DISEASE!!!!!

You heard that right, I don’t have any active cancer at the moment!

Lets take a moment to feel it.

This news is almost as sudden of a change as it was to get the diagnosis seven long months ago; I’ve needed a beat to process it all. But at the same time things haven’t changed all that much. I still have the tumors (at least some of them), although now they are masses of dead cells that my body will eventually process and show them the exit.

I still have pain and stiffness. In fact wasn’t expecting to have a clear scan because I still have quite a bit of soreness and ache in my ribs. My neck and shoulders get incredibly sore after a long walk…Kirk and I walked 4.5 miles on a trail the other day and I was locked up for the rest of the afternoon.

But it’s not cancer. I will now be healing from injuries that were caused by the cancer.

I don’t have cancer! Right now…

That’s the other sobering thing about a NED “no evidence of disease” result of a PET scan, there is always the chance of recurrence. 🙁 A pretty good chance in fact. So in a way, this is when the real hard work starts! Eat right, exercise, stay positive, and live as hard as I can.

I’ve had a few friends this week send me tidbits from Andrea Gibson, a well-known poet who just passed away from ovarian cancer. Their words are beautiful, and it’s also heartbreaking because they had a recurrence of cancer a year after the original diagnosis. So, I’ve got to pull out all the stops to keep this body’s immune system up so there is no cozy place for the cancer to take root again.

In fact, I learned that the PET scan, while it detects active cancer in the body, can’t detect the smallest tumors under a centimeter. A PET scan uses radioactive sugar to make a map of how much energy the cells and organs of the body are using; the idea being that cancer will use more energy and therefore be picked up on a PET scan. So, 24 hours before my scan, I had to avoid any strenuous activity and abstain from sugar. I fasted six hours before the test, and when I arrived, was injected with the radioactive sugar and napped for 45 minutes while my body absorbed the stuff…all the places the sugar was consumed would show up in the scan.

And none of my tumors ate the sugar which means they aren’t active cancer tumors anymore, just dead cells.

Hooray!

I keep coming back to the fact that I will never be cured from this cancer. There will never be a guarentee that I won’t get it again. If I can make it 5 years my chances of not getting it again will be better, but that’s a LONG TIME! When it spreads the way it did in my body, its tentacles are deep. We we don’t get cured.

My white blood cells and platlets are also still really low. That can be a side effect from the Tegresso, my targeted cancer med (which I’ll be taking for the rest of my life), so my oncologist will have me take monthly labs to monitor that. Low white blood cells mean I can’t fight infections very well, so I’ve been told to take precautions there. I’ll also need to get scans every 3-4 months, and I’m starting a bone-strengthing IV soon because the numerous lesions on my bones means they are a fracture risk…and I’m almost 50, so osteoporosis is a knocking!

So it’s with mixed feelings that I share this news with you. It’s good, it’s great in fact! But I still have so much to do, and there won’t probably ever be a “return to normal.” It’s going to be finding my new normal…and that changes all the time as I try to get stronger and recover some of the muscle loss.

I’ll leave you today with this morning dance party I went to recently. It was the first time I had danced in almost a year. It’s definitely time to dance.