Friday, August 16, 2019

Jenna to the MAXX

Jenna to the Maxx
Words are not scary things. They’re just Words. They have no sharp edges, no corners, no pokey outey bits. They’re not even actual “things”. You can’t touch them , yet they can touch you. And yah... some can feel like a kick to the gut. I’ll be the first to admit, there have been some pretty heavy hitters in the past 5 years. Words that have hit so deep, with such permanence that I can’t even lend myself to utter them. Deafeningly whispered words...
“She’s gone.” 
Two words I that broke me. These are MY words. I spoke them... I have to now own them. My ears still ring. “...gone.”

I’ll never forget that day. Not ever. I was there, the kids were there, family was there. Giving others a chance to sit by her bedside offered me a chance to step back, to reflect.  It by choice, I’d been up all night and was told to sit down. After a brief reprieve, we sat together once more, her hand in mine. She was beautiful, she looked peaceful, she seemed content. I will forever be grateful to have been given that moment. I was able to be there. I held her hand. I felt her grip. Got a couple light squeezes just to let me know she was good... and... yah.

With energy shared with a far more worthy cause, Jenna had moved on. It was a “Power Moment” that we had. She had to go. Not in fear but confidence. She felt confident in knowing where she was going. In the mark she would leave behind, “A world better than the one she got.” That’s how she liked to leave things, better than she got them. Confidently, she leaves behind two amazing little people. Who, when given the right tools, could shape the world. She felt confident that I would share these tools. I just needed confidence I even had these tools. 

“You got this.” All I could say looking in that mirror while driving my fist firmly into the countertop. Yah, I got this. For her... For them. I suppose, this is what we’re made for. My kids are here because of me. And now I am here because of them. 

I’ve been a dad now for like 10...thousand years. I like to think I’m pretty good at this whole “Never trust a dude who drives a van with no windows.” thing. Or the “Don’t forget your child at the hardware store”-rule.  Whatever that’s about. This was waydifferent. This was unchartered ground. And as the boaters know, that’s usually where the rocks are. How do you emotionally prepare for this. How do I talk to my kids about what I most don’t ever want to even think about talking to my kids about... ever. And as I’ve said, talking is my thing. Talking is something I’ve always had a knack for. But talking to my children about THIS... yah... THAT.

It certainly helps that Bryson and Savannah are great kids. I’m not just saying that because I’m their dad but because I’m their father. And they are Really, REALLY great. Somewhere between the best kids on the planet... and a couple of ferrets playing in a ball pit. It just depends on the... nothing. There is no rhyme or reason to the chaos.

I know I shouldn’t be “grateful” but I truly am. We were afforded “Closure”. We knew this was coming, eventually. The conversation was well underway. Words were used. We’d had them with each other. We’d had them with ourselves. No grief is the same. We are all on our own in that respect. I don’t care how tough you think you are... Nothing prepares you for that kind of silence. Deafening silence. Jenna was gone gone. I sat for what seemed like hours, just waiting for that next breath, hearing my own... much faster now than it was before. 

Since then, I find myself now having to make good on all those misty eyed promises. I’m better at this now.  Remember that “better than she got it” bit? It applies to people too. Before Jenna, I wasn’t exactly selling “longevity”, “responsibility”, or general “adult-nicity”. It had no interest in me and I had no interest in it. Life was a gift and if you don’t live it, it’s just, well... ...rude. So there I was, burning through my nine lives like a methed-out cat on a highway. Enter Jenna. 

It was not unlike the courting of tropical birds. I put my colors on. She looked blankly in my direction. I must have caught her on a good day. My perspective changed. She made me think of my long game. Like a lightning rod, Jenna grounded me. My kids, they grounded me. Now, I get to ground them. #winning

Jenna was also a “Gangsta”. (Or so she said) A lot of people don’t know, She had a posse and everything. Back streets of Tacoma. Well, not exactly. I’m kidding of course. Kinda.

She was a tough chick with street smarts for sure. If only the rest of the Tacoma gangsters  would follow her lead. They’d all have amazing hair, little dogs and be drive-by-glitter-bombing each other’s granny’s houses. But Jenna’s ghetto-fabulous persona lay hidden for the start of our courtship. Perhaps she feared I would pull a “runner” if I thought she was too tough. She once chased a boy with a baseball bat for trying to kiss her in like, Grade 6 or something. I wasn’t going ANYWHERE. Gang-Star.  I wish you guys could see what that looked like in my head. (Just running full tilt, two hands on the bat... Just awesome) In a world full of boys trying to kiss her, she held her own. With faith, strength and courage you can take on the world. I just hope she left some for Bryson and Savannah. (#metoo)  
Oops. 
Sorry ladies... 
(Leave it in the comments) 

Now that I’m home I miss her terribly. Like more than soo much. I will forever love her. What’s great is that I can now hold a conversation about her without breaking down. Misty for sure but not ugly crying. It has taken a month. What doesn’t sit well is that, the process of letting go was actually easier to start than I thought it would be... Than I thought it should be. It feels weird to say she is gone, she doesn’t “feel gone”. I know she would want this seen as a good thing. No matter your creed, just know she is here with us. I see her all the time. In every coincidence that brings us back to believing...There has  something else. Every faith follows the same basic floor plan. Deity or energy, It can’t all be coincidence. I feel we really need to start paying attention and not shutting down the conversation. A good friend, who holds no faith, pulled me aside the other day.  With tears in his eyes, “It was her energy. ... physics bro... you can’t destroy that sh*t. She has to be here.” This is why I love my people. I do feel that she was in my life for a purpose. Whatever it was she was here to do, she did. 
Uh-oh... I hear a cliche-nado approaching...
This world is a better place because of her. My heart is full knowing she is at peace, without pain. I have been lucky to have had her by my side through the toughest 5yrs of my life and I couldn’t have done it alone. Technically, the hard stuff was kinda her fault, Lol. Just sayin’. But to play such a role for such an amazing life force has been incredible. Given the choice, I would do it all again.

Jenna’s presence gave our children a “plum line” of truth, humility and strength. Attributes I hadn’t quite figured out how to master. Not to that level. I’m better now, than I was, for sure. But again, that’s how Jenna left things... 

Bryson and Savannah and their strength continue to inspire me and keep my head above water. It is going to get better. Somehow. It has to. I don’t know where to go from here but I’ll figure it out. It’s going to work out. I took my hands off the wheel a long time ago. This massive pressure that has rested upon my shoulders for so long has, so suddenly, been lifted. The challenge now is raising the kids to the standard Jenna set. It has been a team effort from the start. Balance, it’s what we did. The only way to see this is by finding the good. That’s how Jenna would have seen it. The kids have lived this for half of their entire lives, HALF. If they can do it, so can I, so can we all.

She lived... She loved... She laughed
We should all be so lucky. I know I was. Thanks babe. What’s next? No idea.
I just want to enjoy the little things...
With the “little things” that matter most.

Friday, June 14, 2019

Dropping a Blog ;)


Dropping a Blog...?!?

Wait, That didn't sound like that in my head... 

So much has happened since I last put pen to page. Not all bad, to be fair, but not all good, to be real. I'm sure it’s already a fortune cookie but...there is no pen and there is no page. It’s actually just me and a phone, briefly looking up periodically at everyone else in this waiting room, this cafeteria, this doctors office, this airport... everybody, everywhere, face down in a device. Talk about being “connected”. Seriously, Some eye contact wouldn’t hurt. Right now, for sure I could use some. “The eyes are the window to the soul”... if true, it’s getting a bit stuffy in here.

Alright... where to next? Round two, three. Or is it four? To be quite honest, I might have lost count at "You have Cancer."
*Sigh*, 5yrs since we started (in July)...there have been good times, there have been hard times and there have been, well, not an awful lot in between. Just highs and lows. That’s why they call it a roller coaster... Duh.

I have always felt that this is bigger than just us. So many of you have followed this carnival ride, providing strength, guidance and the occasional fit of laughter. I have been attempting to keep everyone abreast via blog and those have, as you may have noticed, kinda dried up. I think I have addressed this, previously. I have not, however, remedied the situation by just sharing the information, good or bad, as I received it. I could have but have not. The reason being that the information in question was of either little to no importance or pretty heavy hitting. From "Good standings" to "You might want to sit down". I'd rather not use this platform to "check" our emotional baggage. (Pretty sure it's "carry-on only", anyways). I used to write because I enjoyed it. And recently, I just haven't enjoyed what I've written. Can't really wrap my head around it.
Shhhh... Did someone say the "C-Word"?
Errr... That didn't sound right either. Cancer, we're talking about CANCER.

So in the past 7mo we have been "Settled in Seattle". (For the GOOD husbands, this refers to the post marriage/children and far less funny/popular sequel to "Sleepless In Seattle".) Jenna's treatments started this past December ASAP after things started to "amp up" again. I wasn't even in the country when she began. It was go time. This round, however, the carnival was different. Like, everyone working at it was wearing a court issued ankle bracelet kinda different. Jenna’s marker numbers were spiking. Cancer wasn't playing fair, because cancer is a dick. Sorry, but it's 100% accurate. Treatment started and the game was afoot. A good friend once said "Chemo is like playing chicken by racing cancer to the edge of a cliff. Closet to the edge wins." I think about Boston and Baltimore and Belfast. I just think about how close to the edge we’ve gotten before and how close to the edge we need to get right now. (Like toes over, closer) All previous rounds had gone to plan. It kept spirits up. This round has not. So, instead of changing the round it was time to change the plan.

An unintentionally efficient effort to resist the material wants of this world was tabled... at a humble cost of $396,000/yr. Actually, that’s not accurate. It doesn't include the hospital, doctor visits, or lab work. “How long for?” one might have whimpered. "Possibly life." says a medical professional, equally flabbergasted with what drug companies charge for hope. We struggled. Struggled with how we were going to get Jenna the care that millionaires would, themselves, struggle with. I needed to up my monthly income by ($30k+). No big deal, right?!? Oh, but how to do it without interfering with my personal "life goal" of buying/owning/insuring 12 Toyota Camry's during the span of a year. That was the challenge. Our insurance company said, “OH HELLLLLLL NO.” Or something to that effect. You may know, of them I’m not a huge fan but they have carried us this far. Do NOT not have insurance. Luckily, we won big when Jenna was accepted under Washington State Health and was fully covered for the treatment our insurance wouldn't afford! I don’t like using explanation points but this one definitely fits in nicely there.

Jenna immediately began RUBRACA, an immunotherapy and cancer curing Rolls Royce Phantom. We were super positive, this was a HUGE win. Things seemed to be looking up. Spirits were high. Jenna felt good. Energy was good. Life was (is) good. The new treatments efficacy would not be known for at least a month, maybe two. I call it "Soul Mining".

Preliminary results were in and not what we were hoping for. Jenna in her beautifully sweet, and irrationally stubborn way, refused to accept it. I actually agreed entirely. Mainly because I'm not just scared of her but there is no other plan. Jenna is, as you know, a force to be reckoned with and was not done with this world. We would wait patiently for the next months results and hope they showed traction, progress. Unfortunately, they did... progression of the disease, however. Her marker numbers “(CA125)” had tripled. It had spread to a couple of other locations, something called metastasis. (I added that one on because I wanted to know if I could spell that word right... I did not.) Auto-correct, Oh, how I love thee. Regardless, not at all what we were hoping for or what we had come to expect after the success stories of years past. This was not our first rodeo though, yet we were starting to feel like clowns in the ring again. We wiped the tears and bit down real hard. A second opinion couldn’t hurt.

Another type of chemo was proposed. Same as before but different. Not confusing at all. Reluctantly, we began. Well, she did. Whatever, I’m going through this too. Don’t judge, lol. We didn’t get very far before it became evident Jenna really wasn’t strong enough this time. If it was working we would have tried to powered through but there wasn’t any improvement. So, let’s talk to the doctors.

We were referred and set up an appointment. Oh that “New doctor smell”. I prefer “second hand”, personally. At least when talking health care providers...More experience. This doctor was pregnant, really pregnant... like, lucky she worked at the hospital, pregnant. But still, very nice and quite composed as she delivered the news no one wanted to hear. Jenna would ride this wave all the way to the beach. We have exhausted all options. We would continue with the natural path and start hospice care. Its not quite what you may think. They will come to the house once, maybe twice a week for now. Moving Jenna, Physiotherapy, Stretching, general get better-ing. Just trying to avoid the late night visits to ER. Being able to be at home is important. Home is now with family in WA. The sad truth being that there is a good chance that Jenna won’t be able to come back to Bermuda at all. It’s difficult to say for certain but we’ve had to be brutally realistic these days. Right now there’s no way. With the thought that chemo was not happening starting to set in, we sacrificed a box of tissues to the gods and stared. And stared. And stared. In awe really... I just couldn’t believe it, That someone THAT pregnant could keep her emotions in check while delivering news that made my face leak like like an open juice box in a childs backpack. 

Plan D:
We are officially done with chemo. A statement which brings as much joy as pain. If she were to continue, it could very well take her from us. It wasn’t to happen that way, not on my watch... with her permission:) We need to harden up and do this our way. Bring on the veganism. That’s for Jenna, not me. No thank you very much. It’s not a macho thing...I’m cool with veggies. I will say, mind you, that it IS said,
“The fastest way to a mans heart is through his stomach but the best way to a vegan’s is through his vagina.”
I’ll just leave that there. Sorry herbivores.

I know Jenna has covered a lot of the details of what’s going on and with a far more concise delivery. I don't always know what Jenna writes so there’s likely to be some overlap. She fills me in after the fact on topics covered. It’s cool, besides, I talk a lot, it’s how I deal. - How wonderful for you... you get to hear everything twice. Welcome to the “Double Dose Club”.
Come on in, the waters fine.

Let’s wrap this up. Sorry, again, a lot to unload and this blog is somewhat of a punching bag for me. Things clearly seem to be wearing on me more than Jenna. She’s always HAS to be the pretty one, ugh.

What we want is not for people to weep and be all, “This is the beginning of the end.” It isn’t. This is not a good place to be health wise, for sure. We need to push this thing back, for sure. But it's also not over, for sure. Good things to come.

As always, thanks for the prayers or vibes or whatever you prefer to call them. 
Bring it on. Every bit counts and it really does mean the world. You guys rock.

- Much Love
John, Jenna, Bryson and Savvy

Saturday, April 13, 2019

Let It SNOW...Snow...snow...no!


February
was
a struggle
but
Victoria BC pulled us through!

There was so much tension between John and I with where we should live for the month of February.  We had previously been in a great 3-bedroom Airbnb place near my sister and parents place, but it wasn't available for February.  When you're overseas for medical care, you have to take into consideration long-term rentals and it gets complex when you start applying for rental properties without US Credit reports.  So, the next best thing is short-term rentals and AirBnB fits the bill!  Once you start browsing Airbnb, which I am an expert in now, it can get overwhelming especially when we're debating if we should be close to family, or close to the hospital.  You start to factor in the neighborhood, how close is a grocery store, transportation, but the huge factor is does the space allow pets?!  When we decided to come out to Seattle for treatments, it was going to be an entire family move!  Bernard (dog) and Kitty Indo (cat) are so much apart of the family, that leaving them behind in Bermuda again in less than a year was unspeakable.  Just a little information, it is much easier to find a place accepting dogs over cats.  I would've never guessed.  I have also learned that if you are staying in a place for a long time, go ahead and ask for a discounted rate!  It works and it makes owners have less of a turnover.  

Aside from living arrangements and it's complexities, the main issue that I questioned EVERY day was whether the treatment was really working.  Up to this point I had had 2 visits to the ER.  Both were disappointing and I soon realized that the ER was just a place to help with the pain and unfortunately for me the ER doctor I had both times told me "there's really nothing I can do for you."  (It wasn't until my 3rd time in March that I realized, it was just that doctor and finally had an ER doc who navigated me to the right professionals.)  For about 2 months, I felt like things were a revolving door.  I'd go in for follow-ups after chemo, cancer numbers were rising and I was sent out to manage discomfort.  I swear the doctors feel like they absolutely have to do X amount of treatments to suit the theories and to test the results.  Yes, all in the name of science.  Well I am a firm believer, as you all should know, that there is a fine balance between science + logic and feelings + emotions.  As we met with my oncologist in early Feb for the onset of round 3, I was determined to let her know this was not working.  My body was not whispering this to me, but rather YELLING!  I had never had such an awful response to chemo and I personally was adamant this was it.  We sat and talked, John by my side asking all the questions I always forget.  It wasn't until she asked me, "Well what will be your plan if we stop chemo all together?"  

Tears swelled and an overwhelming flash of emotion settled in my chest.  Not necessarily because I feel chemo is the all end, but because my answer in my heart was "I just want to be able to enjoy being a mom, going for hikes, playing with our dog, going on dates, just going for a walk!"  I shared that with my doctor all the while holding it together and told her that with John's health condition and being parents of two angels, I had no choice but to fight.  I soon realized that I had not told her about John's health situation with brain cancer in 2015.  Ooops!  She sat shocked and totally speechless, I felt bad as I would've shared that a little bit more "human-like".  I forget that not everyone knows how we have both shared this cancer story, but more so how our kids have been dealt this experience in life.  It felt like we went from medical plans to a therapy session, but for whatever reason it put us on to the right path and topic of discussion.  I have learned to have patience with my logically minded doctors and sooner or later the whisperings of the Spirit find a way into the conversation.  It is a miracle to watch as I put my trust into God after I've done all I can do.  So, when I say sooner or later...my plan was replaced with "OK one more round".  We all decided together that I would have one more go of the last round of chemo, see how it played out and go from there.  In the meantime, the new part of conversation triggered the urgency to really start exploring this crazy expensive drug called a PARP inhibitor that is made specifically for those with the BRCA gene mutation.  It had been made mention of by my doctor early on in December, but financially and coverage was out of the question.  You know up until this point, these rounds of chemo were more or less shots being called by what our insurance provider would cover.  Health insurance is great, having coverage is a great...it's the policy's fine print where you have to pay attention.


Bernard and Shenzi
My blood counts were low and so I requested time to take for my white blood counts to rise naturally to which my doctor agreed.  In an attempt to relieve our day to day stresses and remove ourselves from just waiting, we ventured off up to Victoria BC for a week or so before treatment on the 14th of February.  Going to visit our dear friends Kim and Darren proved to be the best medicine ever.  We were spoiled with snow, the kids had an outlet, and John and I had a little break from reality.  


Deer visiting the neighborhood


Darren leading the crew on igloo building

The kids playing dress up :)





It wasn't until the snow didn't stop that I became a bit worried about how I would return to WA for treatment.  The roads were packed with snow and ice.  It was crazy! To top it off the ferry between Victoria and Seattle had postponed some days because of the weather.  We were at a loss, but with Kim and her "git-her-dun" attitude, she proposed we take a seaplane to Seattle.  I thought, gosh if the cancer doesn't take me out, then this trip surely will!





The cancer has brought on this unbelievable anxiety and the thought of getting into a small plane, going over freezing cold water was freaking me out!  I had about 24-hours to "freak out" and before I knew it, amongst the prep and all, we were in Victoria's seaplane terminal.  I'll tell you my friend Kim is fearless and when I'm with her she is contagious.  She has this wonderful ability to take charge, have compassion, push me beyond my limits, and all the while stay happy!  I am most fortunate.  Everyone should have a friend like Kim💜.  John jokes that I listen to Kim more than him, but it's not true...she is however our 3rd party unbiased, sensible, no-nonsense gal!  

So, we arrived in Seattle and I'll tell ya'...seeing the skyline of Seattle made my heart happy!  Not only because we made it, but because the seaplane trip was the most peaceful, calming, beautiful scenic route and it was nice to be coming back home.  Anytime I have ever flown back to WA, I love to see the Seattle skyline.  We landed on Lake Union like a swan landing on the water...so graceful!  I will definitely do this again.  The snow and the breezy cool air were still lingering in Seattle, it was a beautiful sight.
  

We had the day to get to the AirBnB, grocery shop, have my bloods drawn, and prep for my treatment the following day.  Thankfully my parents came and met us in Seattle to stay with us while I was back home for 2 days!  The place we were staying was however a challenge to get to...the snow hadn't been plowed on the steep roads to the house.  We were met by a van blocking the road and stuck on ice and in a ditch.
  

Kim, with her determination, figured out how we were going to get around this obstacle...  You can see her in this picture just left of the van in her orange jacket.  She was assessing how far up the road the house would be and if it was doable or treacherous!  In the end it worked out, a Prius with limited traction, a hobbling Jenna, and an elderly mother!  

The final round 3 of treatment started off on a good note...if you can say that about chemo.  I must admit the nurse staff are awesome at NW Hospital and tell me that I'm one of their happy patients.  No pressure, huh?  I have to keep that reputation!  All in all, it's not their fault I have cancer so better to make it a pleasant experience.  I was on to the sensitive drug about 2 hours later and started to have some reactions, which I hadn't told the nurse about because I didn't think it was a big deal.  My fingers had started to turn orange, like I had just eaten a bag of Cheetos...but I hadn't.  This began the high alert mode.  The nurse said if I should feel any tightness or anything unnatural at any time to let her know.  No sooner than a drip, drip, drip, of the main drug went in I started to feel tight in the chest, short of breath, and pain in my chest.  It was a all hands on deck!  ...  Thankfully the staff are super stars and their emergency preparation paid off.  Immediately, I was taken off the IV, given some anaphylactic meds, and put under supervision for about 2 hours and then we were able to go home with a strict regime.  

Things became more clear that other decisions had to be made.  It was a bit of mixed emotions for John and I.  I had come to the end of any chemo being effective, so the options were more or less running out.  I met with my doctor a couple weeks later... I could qualify for a couple of clinical trials OR I could try for the PARP inhibitor.  Both options NOT covered by insurance.  It's moments like this when you shake your head and wonder why you pay so much to be told your plan doesn't cover options A or B.  I will say this...after traveling around the world and having medical treatments in Bermuda, Belfast, Boston and now Seattle...the staff in Seattle especially my oncology doctor stood up to the challenge.  
When you feel like your options become non-existent because of health insurance, there's only one thing to do...fight even harder and have faith that if things are supposed to move forward they will and if not, then enjoy each day to the fullest.  I took this as just another obstacle to overcome!  Thankfully I am surrounded by a team of family and friends who are also here to help navigate obstacles and thankfully I am still strong and able to physically do this.  I often think of some who are too weak or unable to qualify for trials or unable to have people fight the insurance battles.  It makes me wish that one day I will be able to help others, or inspire others to not give up.  

Speaking of inspiring, I heard a young girl named Sara who was on the Evening t.v. show one night highlighting kids in the Pacific Northwest who have done service projects in their hometowns.  She said, "Perserverance [is important] because if you just give up, you'll never know what will happen!" - Sara (12yrs) from Shoreline; started the Edwin Pratt Early Learning Center.  

This is how we should all live our lives!  
Beacon Hill Park, Victoria BC...end of February 

Monday, March 25, 2019

Buckle UP

NW Hospital Birthday flowers from Granpa Phil and Grandma Clipper ~ 20 March 2019 ~ 45 years young

Buckle UP


Here I sit reflecting on the events of the day... days, maybe weeks, definitely months but please don’t get me started on the past 5 years. We’ve been kind of MIA these last few months. It’s been hectic. We’ve had and still have some major decisions to make and are grateful for your support more than ever. Jenna has just been released after undergoing surgery to fix the circulation in her legs. A problem associated with her disease putting pressure where pressure need not be put. The surgery went well and we are hoping for more comfort in the weeks ahead. But we still need to step it up from a treatment standpoint.

Just know that we are good. In a good place, surrounded by good people for a good purpose, Jenna. Because that’s what matters most. Well, not Jenna Jenna. I meant good people. But yah, Jenna too. Jenna’s good people. But I was actually talking about family and friends. That’s what I meant by “Not Jenna.” Errr... I suppose Jenna falls into both of those categories anyways. Soooo...
...I guess, Jenna? Jenna too!
...Jenna #1.
Truthfully, Family and friends are where it’s at and looking at it any other way is just not worth the ink on paper.
*Also, I’d like to point out that I just effortlessly mentioned Jenna like 11times during that word purge. Make that 12 Jennas. I call it “The Jenna Show”. (14x!)

Now...What was I talking about?

Oh yeah, and I cried watching ‘Deadpool 2’.
Wait, wait ...I can explain....

As fore-mentioned, a lot has happened since Jenna and I updated everyone. Which has been literally one week shy of a YEAR. So yah, a few developments. Few more bricks in the wall. Same general sh*t storm with a side of “Poop-nados”.
What I’m getting at is... just enough to justify a blog post.

*Please note that this is not a cry for help.
Quite the opposite. I felt inspired to pick up this pen because we actually lead an amazing life.

Life can be funny sometimes. You could also say that it’s a twisted sense of humor. Mind you, it’s hard to complain when you lead a life this good. Alright, you may be asking, should that read “lead” as in present tense, “this is happening now and you wish to be us”... if so, you might be the one whose brain needs a scan.

Or... perhaps it was meant to read “led” as in past tense, as in “used to and it was awesome”, to which some can vouch this too, in fact, be true. That’s it for English class, now on to psychology. In regards to the “lead/led” bit... and the thought process behind it. Imagine an ink blot test. Some see a butterfly, others see the unfortunate rendezvous of squirrel vs. Prius. (They never hear it coming.) Any way you slice it, half of you now know where you sit between “optimist” and “terrible person” on the personality spectrum. The other half just stopped reading at “Cried...’Deadpool 2’.
I’ll get to that.

Be nice... We’ve had a lot going on and we have been exhausting all emotional resources just keeping smiles on our kids faces. They are doing great btw. So grateful to have them along for this ride. Lots of questions demand lots of answers. They keep us grounded while eroding our sanity at the same time. The last 300 times I’ve sat down to write a blog, the words have fallen short or I’ve fallen asleep or I’ve been interrupted by said children or I watched ‘Deadpool 2’.
So here it is: “Zombie Blog”

It’s a lot to think about, what’s going on. It’s a lot of pressure sometimes to write about your problems. Not from outside but in. I want to inform but not while making people pity us. It’s a long story and we don’t know the ending. That might just be a good thing. I can’t possibly cover it all so bare with me as I try to string together random flashes from an otherwise completely untethered mind.

Deep breath...So let’s begin.
Last year, as many of you know, while in Ireland Jenna was found to have a blood clot in her left femoral vein. Not what you want to hear when you are 3,115mi from home. Being that she could not fly and my yacht was in the shop, we opted to stay in Northern Ireland and undergo treatment. After all, if you’re going to get stuck anywhere, let it be Ireland. 🍀

Now, Chemo is never fun, no matter where you choose to do it. We got lucky. This could have happened in between connecting flights. Chaos ensued. Where to live, where to work, where to school. I’ll try to paint a picture. Think of a train. Now think of a train wreck. Now imagine that train had circus cars. It’s basically just bits of clown... everywhere.

Here’s the thing. The past 5 years or so have delivered some decent emotional upheavals. But it’s Jenna that has carried this family through in times that I couldn’t. With grace, beauty and strength that I can neither wield nor afford. Alright, I regress, I’ve got the grace and beauty part on locked down for sure. While this may or may not be the case, it is her strength that pulls me back from the brink every time, during the most challenging time of my life. A time which involves the hardest days of hers. She says things like “I am soo tired that I actually feel sick... well, I guess, I actually am sick and just feel a little tired.” Holding back the laughter I manage to say “...Man, I love this chick.”

Throughout my life, I have had a way of landing on my feet. Maybe it was my face and not my feet but technically it was a “landing”. The point is, I have been very lucky to have survived this long. I am not known for my wise choices, granted. But things have a way of working out and that lends credibility for the carefree attitude that what will be will be. Jenna’s disease has really made us rethink our life goals this time around. As there has been progression, we need to look deeper into the BIG picture. As luck would have it luck has nothing to do with it. But between us, ever since the moment Jenna said “I do” I have truly felt like the luckiest man alive.

Gag...Let’s go back to summer. Summer was awesome. Granted, my nerves were steady as a rope bridge. Work was good, always my distraction. And I welcomed it 12hrs a day. Jenna, AKA “The Bravo Whisperer” as she is known in some circles, was left to her new social life on the medical party bus. She had the tests, she had the scans, she had the follow up appointments. Nothing major turned up other than the realization she had a much better social life than I did. As for the relentless poking and prodding, There wasn’t much to find... Nothing we hadn’t come to expect. Nothing that resembled answers. Nothing that justified the knots in my stomach. Realistically speaking, she was in a much better way than she was while in Ireland. Life is good.

Fast forward to August. Jenna’s leg began to swell again, my gutless fears justified. Much like that wave... the one after the wave that took you off your board. You know, the one doing everything to keep you pinned to the reef and out of breath.

Jenna pushes us through to help me breathe. I struggle at times finding my path to processing the gravity of what is going on. I hadn’t had much opportunity to talk about things with anyone, didn’t feel much like writing and might have teetered on the brink of depression. Then one fateful night, while watching a movie, a movie that I chose specifically for its morally bankrupt and emotionally stunted content, I found myself sobbing like a snow plow driver in ladies underpants.

So yah. After things started to quiet down on the water, things began amping up at home. No rest for the wicked, they say. “The wicked awesome!” - said Jersey. We began to formulate a game plan for treatments going forward. We really didn’t want to but it became evident that there were more squalls on the horizon. Turns out, Chemo is also a lot like that snow removal technician, the one in the not so tightly-whities? You don’t have to like his style but you have to admit, he delivers the goods.

A long long time ago, I wrote on a bar napkin at a bar: “Truly finding something is really just looking for it... in reverse.” Not really sure that makes sense now but it did at the time. Rum rum rum. Face it, We had a lot of hard questions to find answers to. What about insurance coverage, what do we do if they don’t, where do we go if they do, when should we go when we do, where do we live when we get there, what is our overhead? Even, what do we do with all our stuff when we go? Then there’s boats, a business and I have to ensure that I never let the image of that pantie wearing plow pilot return to my skull.

The bottom line (pun intended), was if we had to go stateside, where my family was not, then why not go to Seattle, where Jenna’s family was? We clearly needed the support. Well, I did anyways, Jenna too. The insurance company finally approved as long as we jumped through the hoops of “preferred networks”. (That’s for another blog) We booked the tickets, sold pretty much everything and here we are, in Seattle, figuring things out as we go.

With things progressively getting worse and chemo not pulling it’s weight we had some difficult decisions. The previous treatments in years past showed results. Which does wonders for your endurance in high stress environments. Even though the disease came back each time, at least it still offered us a break and a “normal life” in between rounds.

Not the case in this sumo fight. The chemo just wasn’t cutting it and it had to go. Disheartened for sure but of course Jenna took it in stride. Her faith has been a driving force. Sometimes it helps to just “Just take your hands off the wheel” and hope that someone’s looking out for you. Having faith in a higher power regardless of creed allows for peace of mind right now and gratitude for what’s to come. I’ll leave it there so as not to make this uncomfortable for all the heathens. (Kidding, if you were I’d be your king.)


One occasion I remember, while discussing what our plans would be should things take a turn, Jenna let it be known that she was not at all afraid to die. Imagine, when nearly every scan just scares you... but your not afraid to die. That’s bad ass. I know it’s not a pleasant conversation but one that’s very relevant when we’re talking about the kids, our illnesses, their future and how this is affecting them right now. Having a plan is not my forte but the need for one is real.

There have been studies that show that before they die, elderly patience who were asked “What are your regrets?” Respond with things they’ve never done.Jenna feels comfortable with the idea of having to leaving this place. Not that she wants to go, just that if she has to, she is not scared to “be called Home”. She’s proud of what she has done. She is proud of who she is. And she is proud of the legacy she leaves behind. We should all be so lucky.

She also mentioned that she was comforted that the kids would always be in good hands. Whether she meant mine I’m not exactly sure. All this while, in the very same breath, explaining that she had already picked out whom I should marry when she’s gone. Not sure if I get any say in this but I have heard it said... “first time for love, second time for money”. It would certainly solve the yacht issues that have been plaguing my dock spot. She’ll probably haunt me for the rest of my days just for joking about that.

Anyways, to clarify... we are not there by a long shot. I don’t want to send the wrong message. We are just trying to prepare for what’s ahead, no matter how difficult and unpredictable it may be. The more conversation we engage in, the more understanding we are able to engage in. I don’t know what’s around the corner but we will meet it head on, as a family.

Wednesday, February 28, 2018

If The Scribble Still Fits

I wrote something last year. Well, it may not have been a whole year ago but it feels it. Frankly, the months are starting to blend somewhat as we continue on this path and cling to what we hold most dear... family. 

It read: “I’m grateful that you can... and yet so sorry that you have to.”

It isn’t easy to put to words, sometimes, what courses through the veins. We have abilities that, often unbeknownst, declare themselves when they see fit. I have, at times, struggled to find mine. Writing has served me as an outlet to express the emotion that is everyday. But trying to develop the very thing that defines you in a crisis can be a struggle. 

Over the past two years Jenna has shown strength beyond that which has been asked of her. She has had every right to snap back, show weakness and draw upon the support of those closest to her. Primarily, me and the kids as we inadvertently isolated ourselves out on Hinson’s Island. Believe it or not, the plan was not to cut off completely but merely to reconnect with nature, family and the very idea of home. We knew she was sick, we knew the risks, we accepted our fate. The point I’m trying to make is that she did not give up, give in or accept defeat. She is the strongest woman I have ever met. So often I've found myself being comforted by HER words. The children finding solice in HER arms.  I was so busy stressing about everything else I nearly lost the plot.

One day she came to me with an idea to make jewelry to try to offset some of the bills.  Things weren’t quite that dyer but she could clearly read me. Finances of a single income family of four with offensive medical bills in Bermuda were starting to take their toll. It was explained that she genuinely wanted to do this and thought it would be fun as well as help things along. I remember writing her a note which I never delivered. I’m not entirely sure what it said but it started with: “I’m grateful that you can... and yet so sorry that you have to.” These words would come back to haunt me, this time in a good way. 

Over the last three months we have settled quite nicely into our new surroundings.  As you may have heard, we have found a home away from home here in Northern Ireland. Bryson and Savannah are enrolled in a great little school just up the hill from us.  New friends have filled gaps we didn’t even know were there. I have been fortunate enough to have found work close to home. So I can be here for the important stuff and call my hours as the situation allows. To help with the bills, we rented our wee island home until June when we plan on returning and here we are... all caught up. 

So where does this leave us? Well, Jenna’s treatments are going to plan. Although it is difficult to see the forest for the trees at times. I have been trying to write a blog since New Years but have had difficulty keeping the “chin up”. It has been a difficult winter. We cannot forget the recent loss of our dear friend Nicoleta Fundureanu. Who after a good fight leaves behind Tyler and their healthy baby boy, Clay. Things are, after all,  still very “real”. We often find ourselves seeking answers to questions we hardly understand. She didn’t lose the battle. She fought it to the end. She taught many what it means to sacrifice as she delayed treatments to ensure the safety of her unborn son. She is a true inspiration to anyone who finds them self lost in the trees. As if these words needed deeper meaning ... “There is pleasure in the pathless woods”.

For the record, this is not at all how we planned it.  But it is where we are and we have to deal. It’s what you do. Jenna's situation was far from great when we found she could not fly. Hence the relocation. Treatment began ASAP, so quickly we barely had time to formulate a plan with insurance. After two treatments Jenna’s white blood cell count bottomed out. Her strength was good, attitude positive. And yet this wasn’t enough for the doctors to sign off on her 3rd round of chemo. Mixed emotions followed suit. On one hand we had been gifted a whole week of feeling good, going for walks and playing with the kids. Let's not forget:  holding off nausea, anxiety, sleepless nights and pain. On the other, the very essence of her recovery... delayed. As if to undermine the much needed positive we so desperately sought... It was just a week after all. Not exactly a “free pass”.

Here we are a week later. And with a brave face she kisses me goodbye to head to Belfast. Treatment is scheduled for 10:30am but blood work must be done and confirmed before hand. It is a longest day. Her confidence in the heat of “battle” never ceases to amaze. I received the call just before noon... bloods look good, treatment on. Good news for the doctors who want to genuinely see her get better. Mixed emotion for the rest of us who hate to watch her struggle trough the inevitable weeks of trials that have become all too familiar. But this is why we are... here. 

Belfast City Hospital is one of the best in all of Europe for the treatment Jenna is receiving. Her Oncologist specializes in ovarian cancer. It is quite literally best case scenario. How we found ourselves in such a suitable location, I’m not entirely sure. When we came here it was for vacation. (Yup, Northern Ireland in November.) Not quite the pink sand beaches of Bermuda but just as gorgeous. Our families, whether they like to admit or not are very much the reason we stayed. We cannot thank them enough for the support that has proved unwavering and love unconditional. If Jenna is to beat this, it will be here...  because of them.

Too often we let the tragedy out shine the hope. While scanning her bloods to ensure she was indeed strong enough to handle the “healing”... it came to light that her marker had fallen... a lot. This number sheds light on how strong the disease is in her body. It’s drop, better described as a plummet, was unexpected as we are only hitting the half way point of this journey. It is working. Hope, like a sombrero at a stag night, makes an entrance.

Overall, the road ahead is long but we are eternally grateful to have one. To those who doubted the choices we’ve made... I’m sorry we didn’t see eye to eye but we love you all the same. To those who have helped... thank you, words cannot express. And to Jenna... if the scribble still fits...

“I’m sorry that you have to but so grateful that you can.” xo

Thursday, January 11, 2018

Bermuda to Belfast

What started as a holiday in November midway became a time of healing.  We ventured out from Bermuda to Northern Ireland and also a visit to England.  All was going well until pain in my lower back became unbearable and I realised my left leg wasn't looking so hot.  It was swelling and becoming to look like a tree trunk compared to my good leg.  I started to wonder if I would ever see my ankle and knee again.  If it hadn't been for John's uncle who is a retired surgeon noticing some symptoms of blood clotting, I may not be here to write this.  His uncle drove me to the Emergency room and he was spot on, I had a deep vein thrombosis (DVT)...not just one but two in my left pelvic region.  

This was discovered only 6 days before we were due to travel home to Bermuda.  The length of the flight (17 hours door to door) combined with the pressures involved in the cabin would have (and can still) put me at risk of having an embolism.  I realised that this was quite a serious situation as they admitted me overnight and subsequently had to have a follow-up because the pain was not subsiding.  It was very worrisome and a touch stressful.  We came to find out that I had an irregular, large lymph node pressing on major veins in the pelvic region.  Immediately, I was put on blood thinners... given through daily needle injections.  I have had to be a tough cookie this go while having John give me a shot every night in my stomach...this will be for at least the next 5 months, if not for life.  As much as I don't like it, I'm glad John has a steady hand!

I knew I had enlarged lymph nodes, some in my lower back, which came to light in July.  We had been studying the best line of defence to battle this cancer again, but not much was making sense or feeling right this time around.  I knew the natural holistic approach had done its best for two whole years but the big question was what next?  

As I took on this huge question, I kept praying about what was right and researching.  We're talking checking out immunotherapy, cannabis, a pill form of stopping the replication of your damaged DNA, flying to Mexico, flying to Peru, flying to Germany, flying home to Seattle, starting chemo again, or not doing anything at all.  I even few to Boston to meet with my team there before finally consulting with the oncology in Bermuda. Starting chemo again was a huge decision for me to wrap my head around. I had done so much, made so many lifestyle changes over the last two years to just lay down and "accept" chemo. The fight was still in this girl.  Nothing was clear, answers didn't readily present themselves as before. John and I were beside ourselves. So, instead of just waiting around banging our heads against the wall, it was decided that a trip would do us well. We had planned this holiday for 3 months and now it looked like we needed it more than ever. Just making that decision started to make me feel better. Better is good.

So, here we are.  Not quite on holiday anymore, the 2.5 weeks I had were great. It doesn't get much different than Bermuda/Ireland but we are all embracing this sudden change of life.  I can honestly say that having a DVT and being grounded to not fly back to Bermuda, combined with being given the option to do chemotherapy under an Ovarian Oncology Specialist has been the most clear answer to anything I have ever questioned. It definitely did not come easy, nor did it come back in July when I was questioning in my mind what I should do... I can now clearly see the answer these 5 long months later.  Thankfully we have God and angels watching over us. It's amazing how everyone has embraced the change of scenery in Northern Ireland.  We have all made new friends on this side of the pond and the kids have started up school here. As sure as they will deny it, they've even picked up a bit of an accent!  It is such a great cultural experience for them and a nice break for me from homeschooling.  Getting through all the logistics and questioning minds has reminded me of something I learned while serving an LDS mission in the New York Rochester Mission.  It was a quote President Pratt would frequently say,"Blessed are the flexible, for they shall not be bent out of shape."  LOVE that quote and will continue to live by that.



Chemo has officially begun and it's been a doable treatment so far. A different approach this time thanks to Dr. McKenna and her team.  I've inserted a little video link from the morning of treatment.  John has been wanting to get the blog rolling again and I wanted first dibs! We are all in a good place. Chat again soon!  Next treatment is on the 22nd, so I'll be sure to update before then. xoxo

YouTube Video - Chemotherapy - Prepping for first treatment in Northern Ireland 







Sunday, August 28, 2016

A fortunate experience....I have learned to love so much more

Well! I am full of so much optimism and wanted to share. I really need to get back to blogging...sharing is how others can gain knowledge. With that, cancer is at work again and as far as I know is only in my abdominal cavity (Peritoneal). This is unfortunate, but also good news that it hasn't moved anywhere else in my body.

I'm having to cut back a little from taking on too much, which is a real bummer. But my body gets fatigued and so a little R & R is good for the immune system and the soul:). It is something we all need to do...listen to your body!

Since I spoke volumes by having my "port" (line for chemo) taken out a couple months ago, I pretty much said no more to chemo. I still stand by no chemo done intravenously (through the blood/veins).

So, you may wonder what will I do? ... Well, stick to my healthy eating (although I do sneak a cookie here and there and maybe some kettle chips...well like twice this past month). Keep taking my Essiac tea, frankincense, sleep, light exercise (yoga), and rest! Oh and no stress:). We are looking into a new treatment in Germany...fingers crossed!

Life is amazing...regardless of this cancer. In fact, it has made my life more whole...I love so much more and try to live with more purpose. It is a lesson I feel fortunate to experience.

I will be praying that this other form of treatment overseas will happen that we are investigating. You are all such dear friends and I need to send you good vibes for a much longer time!

Huge massive cyberspace hug!
Jenna

A surprise photo shoot! Love my babes!