Thursday, September 28, 2017

Diagnosed at Last: Welcome to the World of Blood Cancers

We debate what to share and how to share it and whether we should share anything at all. We rock between it's none of your business (because it's not) and why not reach out to our community for support and connection? Our family and few close friends already know I'm sick. They know I don't go out at night because I'm sleeping, that if anyone has a cold they're to stay away from me, that big or small trips are often beyond my physical capabilities, and that while I love them, I don't have a lot of time to reach out like I once could. 

Not so long ago I kept a more public record of my health problems, recording doctor's appointments, tests, procedures, and struggles. Since getting off what Gabe and I have come to call the Diagnosis Treadmill at the end of 2016, we've been focusing on how we can live well within the boundaries set down by my illness. At that point it looked like Endometriosis was the only diagnosis I could definitively have, and my primary care provider added "Chronic Fatigue Syndrome" to my medical records as my temporary catchall.  

It took us five years, but we've come to a place where my illness doesn't entirely stop us from pursuing our passions and living a full and satisfying life. It's exhausting to be sick all the time without ever knowing why. It wreaks malicious havoc on any plans or dreams you may desire. 

And my symptoms are insane. All-over-the-place insane: chronic fatigue, unrefreshing sleep, messed up blood counts, legs so itchy I literally tear my skin apart, ocular migraines without a discernible trigger, leg weakness and full on loss of feeling, frequent colds and infections, severe food intolerances, GI distress, dizziness, unexplained nausea, occasional slurred speech, constantly enlarged spleen, joint and bone pain without swelling, fevers, canker sores the size of dimes down the back of my throat, easy bruising, slurring words, and anemia. 

Gods, writing all that makes me feel like I should be doing quite poorly, but these past five years we've changed our lives so dramatically that we now manage each and every symptom on that list as best as we can. We're real life superheroes like that. 


Which is why I know we can handle my real diagnosis. Because we finally have one. 

It turns out that I have a rare orphan blood cancer, a Myeloproliferative Neoplasm (MPN), that usually strikes people 65 years and older. Gabe doesn't call me his unicorn for nothing. 


Within the MPN classification their are three blood cancers: Polycythemia Vera, Essential Thrombocythemia, and Myelofibrosis. The first two do not generally shorten a person's lifespan and while they are not curable, they can be treated with chemotherapy drugs so the symptoms (you saw that list above, right?) can be handled. The third is a decade-long (if you're young and lucky) death sentence whose only cure is a bone marrow transplant with a less than 30% success rate at the top transplant hospital in the world. 


I'm now a patient at Seattle Cancer Care Alliance where I see one of the few Myeloproliferative Neoplasms (MPNs) specialists in the world. We believe I have Essential Thrombocythemia (ET), and today I had a bone marrow biopsy to confirm this diagnosis and rule out Myelofibrosis (MF). 

Essential Thrombocythemia (ET) has a treatment, a chemotherapy drug called Pegasys (how hard we laughed to hear it's name), which may relieve all of my symptoms. ALL of my symptoms. Except my food intolerances, as those autoimmune-related. 

My test results come back next Thursday, so we'll have our specific diagnosis then. But already knowing I have a blood cancer has made our outlook a lot more positive. It was incredibly hard on us for me to have been sick for so long without any answers. Now I not only have answers, but a treatment plan. 


I'll have to be on chemotherapy for the rest of my life to control the proliferation, but I'll most likely live out the rest of my expected lifespan if it's ET. That's pretty amazing. And because men are affected by this blood cancer, too, there's a ton of funding and research being done into MPNs -- unlike Endometriosis, which I also have. (I just concluded a six-month course of chemo to get my most recent bout of Endometriosis into remission this past July. In January of 2016 I had to have an unexpected surgery to remove a lemon-sized Endometrial cyst that had grown from nothing in the course of three months). 

If I end up with a diagnosis of MF, we have options there, too, but that diagnosis is incredibly unlikely. 

So here's a link to learn more about ET, if you are so inclined.

After you read that you'll want to know that I am positive for the JAK2 mutation, which leads to poorer prognoses but can still be managed. The biggest threat to my health is thrombotic episodes (stroke or blood clot, specifically), and I'm on baby Aspirin to help reduce my risk. The chances of my cancer evolving into another MPN or leukemia is low, but does increase with age (as do all risks of illness, genetic mutations, etc.) -- and think geriatric age. 

If I have ET, Gabe and I will learn how to give me the chemo injections (Pegasys!) this coming Thursday. I'll need to give myself injections every week for the rest of my life until there's a cure. While I'm definitely not looking forward to it and have to discard my fear of needles, I'm more than willing to learn. I'm so excited about the prospect of regaining even part of my health, because no matter how well we've handled my five-year illness, it's been hell to deal with all of it. And now we have a chance at better. Finally. 

Monday, January 2, 2017

2016 in Abbreviated View

You've been a year of surprises and love, 2016. 

Every year Gabe​​ and I live in the same country, same city, same home, it's a brilliant year.

 Gabe, the dogs, and the cat are in good health, 

and we're managing my chronic illnesses and health challenges with a grace that's been years in the making -- and that's after the year started with an unexpected emergency surgery for me! 



I'm sick every day, but I honestly don't think I've ever been healthier. 

I suffered an accident at work that sidelined me for months but left me with a new appreciation for how amazing our bodies and brains are. 

We started running (thanks, Denise​​!!) 


and ran our first races (at Disneyland in costume, no less!) a 10km followed the next day by a half-marathon! 
 







We went to a ton of sporting events (Storm, Mariners, Seahawks -- thanks for that last, Kirby!), art shows, and ballet performances -- how lucky are we to live in a place that allows us to do all that?! 

We took new classes (our Jewish learning class was the best of them). 


Our social group grew in leaps and bounds, and we've had the privilege of getting to know interesting and funny people. 

Gabe and I visited our families this year, and they visited us. 

 

We took relaxing and beautiful holidays (Lake Chelan was particularly amazing). 

Work has gone well for both of us as we've continued to grow and develop new skills. 

Gabe was promoted to Assistant Chief Engineer at his TV and Radio stations. I can honestly say I am my favourite version of myself right now, and every day I've tried to add more time for creativity, art, and play. 


Really, 2016 has been a phenomenal year and we've been so fortunate. 


We're making plans for 2017 (a marathon, Greece, a new home) and I hope the plans you make bring you curiosity, laughter, focus, compassion, good health, and play. 

Create. 
Challenge yourself. 

Volunteer. 
Do so much good. 

Sunday, September 18, 2016

Running Costume

Our RunDisney costumes continue to come together. I think I finally have a feasible quiver put together for us! 

Yay for the purple pool noodle! And yay for that stellar arrow! Not so sure about the elastic straps (chafing?!). We'll have to test them out on our 12.6km run this weekend! If the quivers work, then we are all set for our Hawkeye costumes...and I'll start work on our Captain America and Winter Soldier looks for the 10km (or should those be our half-marathon costumes?). 

Monday, August 15, 2016

The Challenge of Savings

I'm getting my hands into our money again in a serious way. I'm tired of seeing month after month go by with no savings and a huge number of stupid expenditures. Stupid, but not unusual or extraordinary, as the unpredictable happens every month. 

I always focus my energy on our Big Bad Offenders, which means our top three or four costly items. 

Our mortgage tops the list at $1500 with an additional $363 in monthly home owners dues and then a bit more for home insurance. We plan on selling our condo this January for approximately $350,000 USD. While we could turn around and buy another now in the $350,000 range, we are both much more keen on getting a condo with a smaller mortgage. This would lower our monthly payments, create an emergency savings, and be a huge weight off my mind. It also seems like a real possibility, as are looking to move to the border of the city. 

So, fixed, known costs for now with possible improvements in the near future. In the past six months we have spent $10,401 on our home.

Our next biggest category is food. This is a category I've been biting at for months now with no improvement. Trying to get a handle on it hasn't worked, so I've gone back to basics: a full and comprehensive accounting of every food expenditure I make. Here's what I've come up with so far: 

The list on the right is what I eat in a month and the cost of each item. It allows for protein at every meal and the calories I need to keep from losing weight. It also takes into consideration my preference for organic, humane meat. 

I'm trying this list for the next 32 days to see how it affects our budget. At least my food will be fully accountable, and G has said he will try to do the same. We will see where we end up. I've spent the last two hours making burgers (16 beef, 32 turkey) and am about to cook chicken breasts (16 meals worth). In our food and dining budget we've thrown $7308 into our bellies in the last six months. 

Our next biggest category is gross but should shock no one seeing as we live in a country that thinks sick care is a privilege only the wealthy should be able to afford. We have about $900/ month in medical payments. No medical debt, but payments for services both of us require. And keep in mind that I reached my out of pocket maximum in January. 

Ugh. Disgusting. I really don't know what to do about that short of stopping necessary care to save money now and paying for it in declining health instead. In the last six months we have spent $3891 on human health. With our "great" "health" insurance and everything. 

After that our wee furry animals pick up a big chunk of our monthly expenses. In the last six months alone we have spent $3633 on them. 


Obviously our gremlins are worth every penny -- they're one area where spending aligns with my values -- but I'm taking at look at just how and why and when we take them to the vet. Aaaaand how many treats they really need. 

Finally, travel takes a chunk of our money, whether running home to Canada, hosting guests, or planning larger trips. In this area I feel we really do try our best to ensure we a) have a great time and b) spend only the money we need to accommodate our experience. That said, maybe we can do better here. Our upcoming trip to Anaheim will give us a good chance to try out this leg of our financial planning. 




Sunday, August 7, 2016

Unrooting the Tree

G and I have recently been talking about moving.

I say recently, but I've been talking about moving to G since the first summer I experienced in the condo (I'm not saying it's bad here, but I am not meant to live in a city, and the Hill is the city).

These past few months, though, G's recently becoming a very active and willing participant in the conversations. We've had our real estate agent and his associate do a work up on our place and figure out our starting price, and if all goes well we hope to sell in January.

All going well looks like a few items, not the least of which is building up our savings. Quickly.

The plan right now is to move out for the beginning of January, do whatever repairs need doing (my dad has very generously offered his labour to help us!), have the condo professionally cleaned and staged, then put it on the market and sell it (the standard right now is to have it listed for only a week!).

In order to move out, we need to find a place to rent, get a damage deposit together, plan for a pet deposit, and then have money for the first and last month's worth of rent. Crazy, right? To say nothing of the actual cost of a moving crew and truck rental, renter's insurance, or any other related shenanigans.

Until today, I didn't feel entirely secure with this plan, even though I came up with most of it. The reason? It took me a long time to figure out, and it's not something I've ever had before.

Growing up, we moved a lot. The longest I ever went to any one school was five years -- a serious stretch of time for a girl so unrooted. And unrooted is my practice. I don't get attached. I move a lot. Homes are temporary and subject to instability, unreliability, and change. That's life.

Except, that hasn't been the case here.

Perhaps it is simply the difference between owning and renting. Until I came to live here in Corner Hill (yes, I named the condo, don't judge), I had only ever rented and lived in homes that were not my own. I didn't have autonomy of place and certainly never felt invested in any of them. I never settled. Why would I? They weren't mine.

But Corner Hill is mine. And it has been my stable, constant home for more than four years now, though it's been in my life for seven! That's a long time to have a place to call home. I've been able to paint the walls, make improvements, not fret when the dogs chip something... It's been home. And I don't know that I've actually had a home before this.

I wasn't feeling entirely good about our thoughtful and orchestrated plan and couldn't figure out why because I haven't been here before. I haven't been rooted to a specific home. I know my roots run long and deep on the Island, which is where I belong, but I don't have a home there (yet). My home is here, in this physical space. And I'm planning on leaving it.

Is it any wonder I feel odd? Ripping up these roots is not easy. I feel fear about moving, fear based in change. That couldn't be more wild to me.

More than that, I've had to face the fact that I'm still very sick. So while we may dream of owning a single-family home, what we should actually be looking at is a well maintained 1000+ square foot condo on an acreage. It's a good compromise, and opening our options to the condo market has actually excited both of us.

That said, I feel good about our plan today. Really good. Excited even. And not just because I've faced down my home dreams and now aim for another condo. I'm psyched because today we found the area we want to move to and it sings to me! We're going to have to do more research, but having a very concrete idea about our future direction is soothing, and I find I'm not ripping up my roots; they're already moving me.

Now we just need the money.


True North

The words "True North" make me think of home: of Canada's national anthem, glowing hearts, ice-coated eyelashes, and northern lights. Those two words conjure a life that seems far removed from the one I live in Seattle, though the memories still sing to my deepest self. When I hear the words True North here I find a different context related, one that asks after dreams unburdened by reality and purpose in compass form, a single driving force by which one steers one's life.

Last year I took a course called The Artist's Way, which is based on a book by the same name, and found myself again coming upon this idea of a True North.

Let's be honest: the idea of having a single purpose terrifies me. I live my life flitting from one experience to the next and holding close that which suits me for as long as it continues to do so. Even trying to define my purpose as "embracing new experiences" or "discovering as much of the world that is good and pleasing as I can" fills me with great terror, feels too restrictive.

I've come to embrace phrases like "Renaissance woman," yet that doesn't feel like my life's purpose so much as a pretty accurate description of my varied interests and activities.

If I look at the sum of my experiences, though, each one is an act of creation. Each one is a moment of discovery. Each one is a decision to bring something new into the world.

I create. This is why I am. This is what makes me. That act of creation. That engagement with art.

Friday, August 5, 2016

A Little More than Two Months in...

Well, we've been at this running thing for a little more than two months now. I haven't (quite) died yet; Gabe's kept up; and the weather's been nothing short of fine.  

Green Lake has become our Sunday destination run, but as we move into further distances,we'll be trying out new trails.  

The day I turned 33. 

You can tell I was crashing here. Details in That Wall Tho

We had our first run in Canada!

The day I really crashed. 

Post-crash I realized I needed to support my body better on any run longer than 30 minutes, so I bought this lovely contraption. 


I also learned how to make a homemade electrolyte drink that I now take on my runs. It's made a big, big difference!

We are getting stronger and faster. 

I've been reading more books about running. 

Gabe's lost a little more than seven pounds since we started! His target is to lose another 20. 

My favourite photos are the ones we pull faces. It usually means we had a good run and finished feeling good. 

This green shirt is my new Hogwarts Running Club shirt! I'm in Slytherin and love it!

This shirt. So good. And totally badass. 

We do try to remember sunscreen. 

But first thing in the morning we do forget sometimes. 

Our intervals are now at 30 seconds of running, 35 seconds of waking. We hit an even 30/30 this Sunday!!

Not so long ago we were at 5 seconds running, 55 seconds walking. We've come a long way!

And that feels good. 

My current personal records.

I've gone 123.24 miles for charity!

And finally, this new running shirt marks the beginning of my Winter Soldier costume!! Our RunDisney adventure is only 98 days away!