Wednesday, June 3, 2015

Colondar 2016 Photo Shoot -- Back at "Colon Camp"

June 3, 2015

Quiet morning in rural Tennessee on the back deck of The Five Star Lodge, the location again for this year’s Colander photo shoot.  Nothing but me and a cup of coffee, with a bunch of birds (mostly woodpeckers) as background noise.

Quiet morning.

So good to be back.  Walking into the lodge yesterday just felt so much like coming home, like I had left last year’s photo shoot just yesterday.  These people are like family to me.  I was telling some of my Portland friends last week that I could see myself coming back for just a few years as a writer since it *is* a week of vacation I have to burn to come here, and I think it’d be fair to give another person a chance to be a writer and have the opportunity to come back to “colon camp” and contribute to the Colander.  There are more than a few good writers in the Colander family.

But after walking in the door last night … I think it may be awhile before I give this up.  Being a writer for the Colander is my lone serious volunteer activity, and I enjoy giving back to this very worthy cause, but I’d be lying if I said I didn’t get anything personally out of this for me.

The last six months have been pretty busy/hectic/stressful for me, with work and training, and this is a welcome break.  A year ago I had just started piecing some aspects of my life back together, and was frayed at the edges.  This year, I’m in such a better place, I’m happy with where my life is and where my life is heading, but still, there’s much for me to take away from this trip.

Being around another group of amazing survivors (it’s unfortunate we only get to pick 12 — there’s so many other that deserve to be here), along with survivors I’ve gotten to know from previous years just, for lack of a better word, centers me.  It restores my perspective on what’s important in life, and inspires me to be a better person and life a better life.  To not focus on the small things in everyday “real life” that seem so important at the time and take up your entire field of view, and to step back, blink a few times, take in the bigger picture, and see how the small things are just that — small things.

So, it may be a little while before I give this up. 

Last night was the calm before the storm.  Just a dozen or so of us catching up before we get down to business.  Good times.  Today we finish getting things ready for the models.  They show up en masse this afternoon and then we get down to it.  In the end, this is all about raising colorectal cancer awareness by putting together the Colandar for 2016, which is put together from scratch, which means there is some serious work to do.

As a writer, I’m responsible for writing the stories for four of the models this year.  I think I only get 700-800 words for each one, which doesn’t sound like a lot (and you’re right — it isn’t), but for me it’s difficult writing.  Technical writing can flow out of me like nobody’s business, and legal writing is starting to come to me after doing it for eight years, but this kind of writing.  It’s hard.  I can get there, and I’m usually pretty happy with the final product, but it takes time.  My brain just isn’t naturally wired for this kind of creative, fluid story telling.  Makes me appreciate those who write for a living.

That being said, with all that writing ahead, I need to review the applications of the models that I’ll be writing for.  Take some advantage of this quiet time.

Getting' the place all dressed up.


Tuesday, June 2, 2015

Intestinal Blockages. Surgery in my future?

Been too long since I've posted.

Been slammed with my two jobs of late -- my job job (been working weekends to some extent since early December) and my gym job (training for a series of men's physique shows (lots of lifting, cardio, food prep, posing practice, etc. etc.)).  I finished the last of the three physique shows I signed up for two weekends ago, and now I'm in the middle of a two week vacation.  Finally have some free time to catch up on blogging, among other things.

The plan for my vacation was/is Bend, Vegas and Nashville, an eclectic mix of destinations.  Bend was where the last competition was, Vegas was where I wanted to spend a few days poolside (Caesar's Palace) just to unplug, rest and people watch, and Nashville (just outside Nashville, rather) is where the 2016 Colondar photo shoot is being held (I'm returning as a staff writer again).

(Vegas didn't suck)


The competition in Bend was great, and this being the last of my three shows, I celebrated by indulging (more than) a bit in some good (and some bad) food.  I was a bit glutenous and within 48 hours of the competition I drove myself to the ER because of intense abdominal pain, which I knew was going to be diagnosed as a blockage.

Sure enough, the ER CT scan came back as showing a blockage in my small intestine.  My third one since October.  The nurse practitioner started throwing words like "surgery" around, and I said that wasn't gonna happen in Bend.  The only person that I'll let do surgery on me is my GI surgeon at the Oregon Clinc -- Dr. Mark Whiteford.

I felt the blockage work itself out shortly after they got some dilaudid and IV fluids in me, but they still admitted me so that they could watch me go through the standard protocol to make sure I was OK before they release me back into the wild.  Liquid diet, then solid diet, then make sure things are passing through me OK.  Soooooo, two of my three vacation days  in Bend were spent at the St. Charles hospital instead of the nice-ish room I had splurged on to celebrate being done with my competitions.

After my 2nd blockage, I made a deal with my GI surgeon -- if I got another blockage, that I'd have surgery then.  The working theory is that adhesions (scar tissue) from my cancer surgery in 2010 is obstructing a loop in my small intestine.  I don't know why this has suddenly decided to pop up four and a half years from my surgery, but it has, and maybe now it's time to deal with it.

I find myself trying to justify waiting for a fourth blockage before having surgery.  Which is stupid.  These blockages are very painful, unpredictable and disruptive to my life.  I've already spent a week in the hospital during these three blockages.

I could try to live with this predisposition, but I think the only thing that would only work would be me staying on my super clean fitness diet.  Why?  Because each time I've had a blockage, it's been because I've gone off diet -- either with a cheat meal (planned or unplanned) or a refeed.  And those are totally allowed in any clean dieting, so to stay on clean diet with no cheats or refers is pretty unrealistic.

Plus, I'm not always going to be in a position where I can control my diet 100%.  What about when I'm traveling?  And if I'm traveling internationally (big trip coming up next year) or if I'm a few days into a backpacking trip when a blockage hits, I may not have top notch medical facilities nearby, or I may not be able to make it to them.  Blockages are serious stuff, and if that happens, I could be in trouble.

So, I'm afraid I'm likely going to have to bite the bullet and get this done.

Dammit.

As frustrating as it may be to have to sit out from the gym for a few months while I heal.  I'm sure that going through the abdominal wall is going to sideline me for a good spell.

Double dammit.

I see my GI surgeon next Tuesday.  Will give an update then.

Sunday, January 25, 2015

Morning Thoughts

I wish I had more time on the weekends to lounge around so that I could write all the things that I want to write.  With being in the hospital for a good portion of the week, the start-of-year crush at work (I thought I was going to break after the end-of-year crush!), and the training that I'm doing, there hasn't been much free time.  But, I wanted to spend a few minutes this morning before I try and make a dent in the work pile to share some thoughts.

---

A dear friend of mine who I met in the colorectal cancer community and is a part of the Colondar family is in the last stages of her battle.  She is universally loved and admired by everyone in the colorectal community and has been waging her war against cancer for a few years now.  Since being diagnoses with a Stage IV recurrence, the battle has been tough.  I'll never forget how my post-surgery Stage III chemo made me feel and how I counted down the days until I was done, but the prospect of "never-ending" chemo, what many Stage IV cancer warriors have to endure .... I don't wish that on anyone.  Never-ending chemo is more likely to break your spirit, your will, than it is to break your body.  After jumping from one drug to the next as each loses its potency, and enduring debilitating side effects for several years, I've seen a couple of Stage IV fighters finally lay down their shield and say, "Enough is enough.  I'm done.  I'm done fighting."  It's terrible words to hear because of the unspoken implications, but people understand and respect the decision.

My dear friend recently made this decision.

---

You all know that I'm training for a physique competition.  Yes, it can seem to be an incredibly shallow and vain pursuit -- spending all of that time in the gym, doing cardio, and dieting just to get your body into a particular physical condition.  And you know all know why I'm doing it -- as a challenge to myself to commemorate five years being clean.  To do push myself to do something I've never thought I was capable of.

But another part of it is to do it because I CAN do it.  I feel obligated to push myself physically while I still have my health.  (Yes, I do feel like "healthy" is a conditional state.  You never know when it's going to be taken from you.)  I feel obligated to what I do for those who can't because they lost or are waging an ongoing battle with cancer, or have another condition that prevents them from physically active.  There have been  times in the gym over the past nine months when I'm really feeling it, when the blood is pumping, when my t-shirt is full of sweat, when the lactic acid is burning, and when I want to quit but push myself to go just a little bit further, that I get overcome with emotion and lose it a bit.  I've literally had my face in my towel, sobbing for a few seconds between sets, because I think of how fortunate I am to still be here, to still be able to put my body through its paces and feel like that. 

---

That was more than a few minutes.  I have more to say, but need to get back at it.  That's all for now.

Thursday, January 22, 2015

Five Years Clean!!

Got my milestone five year scan and blood test results back this week, and ... all clean!  That's right, I made it to the all-important five year mark.  I wasn't really worried about the tests coming back showing something (first time I didn't have any scanxiety) since every scan, scope and test since the end of treatment has come back clean.  Still, I'm pretty damn happy.  According to my oncologist, making it to the 5 yr mark means that there's only a TWO% change of recurrence.  So, it's safe to say that whatever is going to take me out eventually is NOT going to be a recurrence of my rectal cancer.  

And that's a wonderful thing.

It's hard to believe that it's been FIVE years since I got my diagnosis.  The five years have just flown by.  Recovery has been a long road and I've come to realize that my cancer journey is a never-ending one.  Even though I've "beaten" cancer and adjusted to daily living with an ostomy, every year I discover new ways in how it impacts my life and that I still have adjusting to do.

For example, since starting on my bodybuilding journey last May, I've had THREE intestinal blockages.  Blockages, for those who have not had the privilege, are NOT FUN!  They're exactly what they sound like -- blockages in the intestines that prevent any food from getting through.  Mine is apparently the result of adhesions (scar tissue) in my abdomen that are a result of my cancer surger in 2010.  And, every once in a while, a kink in my small bowel gets caught up on an adhesion, preventing food from getting through.  And when my body is trying to push food through the GI tract and it can't, it's like knives.  I can consider myself a guy who can tolerate a fair amount of pain, but this?  The past two times in the ER, I've been reduced to a writhing mass on a gurney begging for whatever pain medicine they'll give me.

I got out of the hospital just this morning after recovering from my latest blockage episode.  I don't know why I started suffering blockages over 4 years after surgery, but I have.  The last two blockages resulted in trips to the ER and hospital stays.  CT scans that were done during ER triage show the blockages are occurring in the same place and my surgeon is recommended surgery to go in there and clear the adhesion.  And I'm with him.  I simply do NOT want to go through the past 2 1/2 days ever again.

We talked about diet and how to prevent this.  I mean, 99% of the time, my meals are going through just fine ... why I get a blockage when I do is just chance, I guess ... maybe I just chew my meals better?.  I don't know what to do ...

So, I'm planning on having abdominal surgery some time in June / July to have these blockages taken care once and for all.  (But I can't help but wonder -- wouldn't this surgery just create more scar tissue that could lead to more blockages????)

This latest blockage couldn't have occurred at a worse time.  I'm prepping for my first men's physique competition on May 1st, and I've been focusing on training hard and eating clean.  Lying in pain in a hospital room taking in only saline solution and electorlytes in an IV for several days is a big set back on my progress.  But, I'm still 14 weeks out from the competition, so hopefully I can recover.  Even more importantly, I need to stay blockage free until my shows in May.







Saturday, December 27, 2014

2016 Colondar

Know someone who was diagnosed with colorectal cancer under 50?  The Colon Club is now accepting applications for the 2016 Colondar.  Here's the blurb from the Colon Club web site:

Diagnosed with colorectal cancer under 50? Apply for The Colon Club's 2016 Colondar 2.0! Share your journey to help raise awareness and provide hope and support to other survivors.

The Colondar is now... Colondar 2.0! An annual magazine that features extreme layouts of young adult survivors, their scars and stories and articles about obstacles that young adults living with CRC face, such as infertility, dating, sex, genetics, body image and ostomy. This unique colon magazine provides unparalleled support to survivors and their families, colorectal cancer awareness and education. Knowledge is power and Colondar 2.0 is changing the perception of colorectal cancer!

Now accepting applications for 2016 Colondar 2.0: https://colondar.wufoo.com/forms/zafjl3i1fp26gq/


Image

Friday, November 28, 2014

Living Bigger with Colostomy

One last post for today before I log off.

I believe I've mentioned Paul Riome before.  He's an ostomate from Canada who has lived his life to the fullest over getting a colostomy -- he's climbed mountains and trekked through Nepal since getting an ostomy, among other things.  I haven't been to Paul's blog in awhile, but I went to it today and read through a presentation he gave as part of receiving a "Great Comeback" award from Convatec.  There were words on one slide that I wanted to share:
I traded Rectal Cancer for a permanent colostomy. 
It was a good trade.

My colostomy was one of the best things to happen to me in my life.
I am alive, and living is everything.

Certainly the cancer and colostomy hurt me,
but it has made me a stronger and better person.

It gave me a greater appreciation for life, and made me focus on the important things.
I feel (mostly) the same way.  (It's still tough for me to say that getting a colostomy was one of the best things to happen in my life, because there's times when it still sucks. But when you put it in the context of it being something that kept you alive, how can you say that it isn't one of the best things to happen in your life?)

If you want to check out Paul's blog, you can find it here:  http://www.livingbiggerwithcolostomy.com/



Awestomy / Awestomates

A friend of mine that I met at this year's Colondar photo shoot, Scott Zilverberg, is a prolific Instagram-er, and he will pretty much follow anyone.  He's a gym addict and came across another ostomate who recently competed in a bikini competition.  I think she's from Sydney.  Her Instagram user name is "_kaitb".  Check her out. 

http://scontent-b-sea.cdninstagram.com/hphotos-xpa1/t51.2885-15/10808648_731104636972426_1301496510_n.jpg

There's another guy out there who has already competed in men's physique competitions (he's competing at the national level now).  His Instagram ID is ngu_fitness1.  He's in great shape.

http://photos-f.ak.instagram.com/hphotos-ak-xfa1/914578_246895098812349_578100319_n.jpg


So, after finding these two folks, I thought it'd be cool if we could all do a show together at some point and what our team name would be.  I was thinking "Awestomy" or "Awestomates".  I Googled that to see if someone had already thought of that.  And, as I had already learned from being an intellectual property attorney, whatever I can think of, somebody else has likely already thought of it.

Sure enough.  http://www.awestomy.com/

Dammit.

They do have some funny t-shirts, though.  "Cool stoma, bro", "Oklastoma!", "Papa's got a brand new bag".

Still, I think I need to do some work to promote the hashtags "awestomates" and "awestomy".


Thanksgiving


Earlier this week my trainer told me that a regular at the gym who is there when I am in the mornings commented on my progress since I got serious about training back in May, and that my progress inspired/motivated him. I don't know the guy, but this totally made my day.

So, I wanted to pay this forward.

Yesterday being Thanksgiving, I want to say thanks to all of those who have inspired me over the past few years (I'd love to name names, but since I'd leave people out, I'll paint with broad strokes): everyone in the Colondar family (not just my fellow models, but all of those who volunteer countless hours of their time for the cause of raising colorectal cancer awareness); all of the other cancer warriors I have met (in personal or virtually) along the way who have had to dance with the dragon, whatever color wrist band you may wear; those who have battled back from other illnesses and setbacks (both minor and major) to return to normal day-to-day living and enjoying the activities they love; those I see in the gym who bring it every damn day (many of whom whose names I do not know) and bust their ass to work toward their goals, competitors and non-competitors alike (I see your progress and know the sacrifices you make both in and out of the gym); parents (married and single) who do their best to be good role models and provide for their kids; those who give back to the community and serve others, either through what they do as their profession or on their own times as volunteers; those who kept reaching for and ultimately achieving their dreams after suffering (sometimes heartbreaking) setbacks; those who have gotten their own business off the ground after years of planning and hard work; and those who unfailingly take the time to nurture and support their friends when they need it.

You all inspire me to be a better friend, family member, athlete and human being.

Training

Hey gang, it's been too long since I've posted.  I've had lots to say, almost too much, and rather then just write it out as it comes, I've let it build to the point where everything I want to say and report what's been happening in my life since the spring is too much to put into one post.  So, I'll let it trickle out bit by bit, without making any terrible attempt to tie everything together.

Here goes.

I've done a few things to take control of my life, since, back in the spring, I felt some things had slipped away from me.  One of those things was my health.  I'd like to think I'm an active, in-shape guy, but if I take an honest look at the past twenty years of my life, I'd say I've spent more time out of shape than in shape.

When I'm busy or stressed, good eating and exercising are always the first two things to go out the window.  And if I'm down or depressed about things (like being out of shape), it's very difficult to get the motivation to get out of that rut and start exercising again, especially when you've let yourself go to the point where the road to getting back to decent shape is such a long one.  And earlier this year, I was all of the above -- busy, stressed and down about things.

My physical conditioning after cancer treatment has been a series of ups and downs.  Soon after I completed my treatment, I was determined to get back into shape and picked a goal of doing something I had never done before -- do a 100 mile bike ride.  And that was great.  I was motivated to show cancer who was boss, and I hit my goal in June 2011 when I did the Denver Century ride.  I followed that up with the RSVP (Ride from Seattle to Vancouver then Party, a 200 mile ride over two days) and another century ride, but then I let things slide since I didn't have a next goal lined up.

The next spring, in 2012, was when I was picked to be in the Colondar.  Having your picture taken for a calendar is a tremendous motivator for getting in shape, so I got a trainer and got back into decent shape for that.
[I think it's a sad commentary on my perspective on my own health that I had to have something like having my picture taken for a calendar to light a fire under my ass to get back in shape after I had gone through having had cancer.  Cancer!  Shouldn't having a life-threatening disease inspire and motivate me every day to stay in shape?  Apparently not.  I needed something like a calendar photo shoot to get me motivated.]
But again, after the photo shoot, with no goal lined up for me, I once again let things go.  And that's how things went for the next year or so.

In the fall of 2013, with me still in my post-cancer drift, knowing that I needed a goal to inspire me to get back into shape and with the five year anniversary of my cancer diagnosis a year and a half away, I started thinking of what kind of physical goal I could set for myself that was truly beyond what I thought I was capable of doing.  Two things came to mind -- competing in a men's physique competition (If you don't now what it is, Google it -- I've always had a bit of a fascination about bodybuilding, to be honest) or competing in an Ironman triathlon (I've always enjoyed endurance events and had been toying around with trying some multi-sport events for quite awhile.  Problem is I ultimately injure myself whenever I try to get back into running, and I've never really taken to swimming in my life).  I knew that either one would take serious dedication and determination, but that was the point.  The challenge had to be hard.  Something outside of my comfort zone.  Something where I could fail.

So even though I had some ideas on what I wanted to do athletically for my five year cancerversary goal, I didn't do much about it last fall and this spring, even though I had started dating a woman who was training hard to compete in her own bodybuilding competition.  You'd think that dating someone who was living the bodybuilding lifestyle would inspire me to take it up, but it didn't.  I toyed around with it, and talked some talk, but when it came down to actually getting my ass to the gym and putting in the work I always came up with lame excuses.  I was still drifting, unsure of my future in Portland, and unsure of where the relationship that I was in was heading.

Eventually, spring rolled around and things weren't going well for me, physically or professionally.  I had thrown out my back for the umpteeth time and was hobbling around for quite awhile.  One morning, when I was feeling particularly heavy and decided I got up the courage to step on the scale and see how bad things had gotten, I weighed 252 pounds.  I had broken the 1/8th-of-a-ton barrier.

"Ugh.  I disgust myself."

For me, that was it.  That was going to be my rock bottom and I was going to dig out from there.  Mentally, I prepared myself for that wherever I was going to end up, it was going to be a long road.  And no matter where I was going to go, the first thing I had to do was get my back to fully heal.

And so it began.

In early March, after a few visits to the chiropractor and doing a lot of core strengthening exercises and stretching, my back felt strong enough to try and run.  My first few runs were pathetic.  18 minutes was all my lungs, legs and back would allow.  Two days later I was able to go 19 minutes, but I doubled over at the end, clutching my knees and sucking for air.  I couldn't believe how out of shape I had gotten so quickly.

"You turn 45 in a few months, Doug.  Welcome to Middle Age."

In years past when I would (try) to run regularly, I'd scoff at running anything less than 30-35 minutes of running as not being worth my time, and not being worthy of a workout. 

I started running three times per week, increasing my runs by no more than one minute or one-tenth of a mile.  At the end of April, two months later, I had lost about 10 pounds and was up to three miles or so with runs.  My core was feeling stronger with all of the rehab exercises I had been doing, my legs were starting to feel stronger, and my lungs had adjusted to the cardio volume.

Once I had this fitness base, I decided to start pursuing a 5-year cancer treatment goal. I began cycling regularly and I got a trainer so that I would have someone to motivate me and hold me accountable when it came to lifting.

I got to my trainer when I was about 240# and over the next three months he whipped me into shape.  The hour or so when you're in the gym is important, but it's the other 23 hours during the day that make or break fitness success.  My trainer is a magician with diet, and he gave me a high-protein diet that was able to fuel my training (lifting, running and cycling), and allow me to lean out while keeping the muscle I was building up.

I was able to get to my goal of losing 40# before my 45th birthday.  Here's the progress photos.  I'm pretty damn pleased.

After reaching this "lean-out" goal, I decided to go for it and commit to competing in a men's physique competition.  (I hurt myself running, so this decision was easily made for me.  No Ironman.)  So, right now, I'm trying to bulk up and add as much size (muscle) to me as I can, and then when Jan. 1 rolls around, we start cutting for the show, which is May 1.  Here's my current progress.  I'm around 225-230# right now.




















So, that's where I am with my health right now.  Sometimes it seems like my life revolves around work, lifting at the gym, doing cardio, and meal prep.  But I'm enjoying the process.  Looking forward to facing this challenge and getting up on stage.  Here's the poster for the show I'm doing:



Monday, May 26, 2014

Memorial Day

Today's Memorial Day.  Whereas last year I was lounging on the beach on SoCal with some great friends, this year it kinda of snuck up on me and I didn't make any plans.  So, a quiet, lazy Memorial Day this year for me.  Right now, just drinking coffee with a fire roaring in the fireplace.

I apologize for being silent.  A lot has been happening in my life and a mega-post brewing in my head.  I hope to post something soon.  I've been waiting for some events and thoughts to gel, and for a solid block of time to put everything down.  I'm heading to Nashville for the Colondar 2015 photo shoot next week and I hope that the flight there will give me a nice quiet block of time to get everything down.  My recent posts probably haven't haven't been the brightest of posts, but the next one will be different.  Things are very good in my life right now.

In the mean time, I want to share a post from Nathan Bond of "Team Bond".  I'm sure I've mentioned Nate before in my blog, but he was supposed to be with me in the 2013 Colondar (we had the same diagnosis - stage 3 rectal cancer) but had to stay home to support and help his wife, Elisa, who was suffering a metastatic breast cancer recurrence.  It's a heartbreaking story -- a young couple with a young daughter both receiving diagnoses of cancer at roughly the same time.  Elisa lost her battle earlier this year.  Their story received some media coverage and has touched people the world over.  I share this post because Nate has taken the best stab yet in describing how cancer impacts those close to someone who loses their battle.

I guess one reason I'm sharing this is with some screening, at least for colorectacal cancer, we'll never hear fewer stories like.  Get screened, folks.

Here's a link to a Today show episode describing their story:

http://www.today.com/video/today/45736303#45736303

Here's a link to the Team Bond Facebook page:

https://www.facebook.com/pages/Team-Bond/132179996853225

And here's Nate's post:

It has been very difficult for me to sit down and write an update on how Sadie and I have been doing. I have started several times and just like the hundreds of Thank you cards that I have not written the inertia is getting hard to get past. It is still such a raw and painful place to go, but at the same time there is so much joy with Sadie and so much gratitude for all of the amazing outpouring of support and love and sympathy.
I think one of the first things I have to say is thank you. Thank you to everyone who was able to come to see Elisa off and share their love and pain. Thank you to everyone who texted me several times a day to make sure I am eating (I still don’t have much drive to eat but at least it is a habit again). Thank you so much to all of the amazingly generous donations to The Sadie Education Fund (the trust for her has been set up and the money is safely secured and ear marked for education only!) Thank you for all of the beautiful cards and emails that I have gotten.
I have so much to be grateful for in this life, and you have all helped me see more of that for several years now.
I guess on to how we are. Mostly, I am not sure what to do these days about a lot of things. For one, I am not sure if I should continue to post on the blog. On the one hand it feels sacred to me and that no one should touch it, and on the other I feel as though I have some strange responsibility to keep it up. To continue the openness of this journey that Elisa and I started on and so many people shared with us. I am just unsure what I will do as I am with everything else - except Sadie. I feel as though parts of my organs are missing. I mean this figuratively since I am literally walking around without part of my organs from my tumor removal surgery. Nothing feels right in my body, mind or soul. I have no idea if that will ever change. I imagine it won't and just like how having cancer physically and psychologically changes you, you just adjust to a new normal.
The reasons why I am considering continuing with the blog are fairly simple. The first reason is that I feel like Elisa will be coming to correct all my grammar and spelling as soon as I finish writing and part of me hopes that will come true (I will do my best my love). The other and more sane reason is that so many people have written and told Elisa and I, that our being open about our cancer and the trials and love that it brought to us has helped people in some way. So many many people have said this, that no matter how unbelievable it stills seems to me, it must be true. And so I suppose then that it might help others if I continue to talk honestly about what this journey, which is continuing, is like. This loss, this gapping wound that has been torn into the heart of so many people who loved Elisa, is part of that journey. Cancer doesn't stop its vicious ravaging of your heart when someone dies from it. In fact, it spread to the hearts of hundreds more I think. One of the feelings I have had through all of this, especially towards the end as everything became more painful, more difficult and less likely for a positive outcome, was that I should not look away. It was so important not to miss any moment of being in life with Elisa and to do this I had to be completely present. For me that means that you have to be willing to hurt right along with and long after the person you love is hurting. Not to deny what was happening, not to allow false hopes or dreams to cloud my eyes so that I could see her completely and be with her completely for every minute that I was blessed to have with her. So perhaps if I can stand it, or if anyone can stand reading it, I may write about what this process is like, for me and Sadie. I don't really know.
I continue to be amazed, as Elisa and I were from the very start, at the incredible compassion, love and generosity of thousands of friends and strangers alike. It is so heartwarming and reassuring to me that when I look at Sadie and think about the world that she is living in and the pain that she will be unfolding for a lifetime, that I know she is so immensely loved by so many, and cheered on by so many from all around the world. Thank you all so very much for that, for the solace I take in that is quite great. I am also amazed at the strength and emotional insight that Sadie processes. She is able to say when she is upset and sad about mommy. She is able to have real, (short) conversations about her feelings. She has dealt with it with a bravery that she does not even realize she has yet. Another beautiful quality handed down to her from Elisa.
She will stop in the middle of playing with me and ask a question like “Will mommy die again?” or make a statement like “I have dark hair and you have dark hair and when mommy had hair her hair was dark”. And after a short discussion she goes back to happily playing. She is able to process in her own way and at her own pace and for that I am so grateful, and a bit jealous. I often feel like someone else holds the remote to my brain and changes the channel at really inappropriate times. Whereas Sadie clearly is her own broadcasting network.
We spend a lot of time together, we help keep each other strong and feeling safe I think. She certainly keeps me focused on what is important and beautiful in this world, and we still smile and laugh a lot, together.
That is all I can write for now. I hope to be able to be a strong as Elisa was and to keep sharing this journey. Thank you again for all of your love and support and also for your understanding and patience if you are waiting for a Thank you card - they are coming…..soonish.