Eat the Damn Cake

 

I think that my Daddy and I blowing out candles is just a prelude to eating the cake

Back in February, which now seems like lifetimes ago, after I was diagnosed with cholangiocarcinoma and had suffered the arterial blood clot in my leg, I was sitting with my family and someone (I'm pretty sure it was my brother) told me that given everything I was going through, I should be sure to just "eat the damn cake."  Seems like an odd thing to say, I suppose...but I knew just what he meant. 

And in reflection, it means so many things. To me it means, do what you want to do, live your best life, enjoy the "now."  Eating the cake is a particularly evocative image for me, as someone who struggled a lifetime with weight and has been a type 2 diabetic for 25 years.  From time to time that made me someone who may have avoided the literal cake...but I've always tried to enjoy the figurative cake. 

Enjoying the figurative cake for me means making sure I make time to play and that my sense of humor is intact.  Of course the stuff I'm going through is serious.  All the more reason to embrace play. I learned young that play is important.  I had fun with my family, with my "posse" and even with myself. 

My father's career was in education, but he was also a musician...a member of the musician's union until the day he died.  And he had at one time played a comic hillbilly character called "Uncle Zeke," complete with the corniest jokes you ever heard.  My brother, the accountant,  is also a musician, and plays in a rock cover band...and I spent a lot of my youth as my father's straight man, feeding him just the right line to get him into a string of corny jokes (much to my mother's dismay). And I ended up with a B.A. in theatre.

Dad played stand up bass

and he liked to clown around

So music was big in our house...

So was clowning.

As I grew up, our house was the one that let all the kids hang out.  So part of my best life in those years was hanging out with all my neighborhood friends or my high school posse doing all manner of fun things...we may have even studied a bit from time to time. 😏

Shenanigans!

I have always invented myself through what I wore, playing with identity, if you will (I think I ended up with my costuming interest because of this).  Fortunately my mother was a talented seamstress and willing to humor me...so I had ample opportunity.

Mini-me in a softball uniform

I was big on bright colors and felt like a million bucks in these pants and Ike style jacket

For many years I chose long gowns (sometimes period-related) at Christmas....tres elegant!

How am I eating the cake now?

So there is clearly cake-eating history.  There is also some history, as I alluded to before, of denying myself the literal cake and spending a lot of time with things that put off the figurative cake until tomorrow.  Well it is now tomorrow, but fortunately it is not too late. 

Several years ago, while doing our first Disney race, Glenda and I discovered the joy of running in costume.  It was a clear and wonderful extension of my love of trying on different personae and moods with my clothes, of my background in theater and costuming, and of our love of running.  One of the joys of the athletic life for me became creating runnable costumes for many of our races...and I'll be honest, after my blood clot, I thought at first that this outlet, this piece of figurative cake, was gone forever.  I thought that I wouldn't be participating any more and Glenda might not want to run in costume any more either.  Happily, not the case.  She toted my sewing machine up to the dining room table, helped me get started at cutting some things out, and generally encouraged me.  We have walked several training walks and  and virtual races around our neighborhood.  We get some bemused looks from those we meet...and I'm sure the neighbors whisper about those crazy ladies (and that's half the fun!). Maybe they'll see our joy and eat the cake too. 

Tin man's heart race...done in the driveway

 

Woody and Jesse went further afield...all the way to the neighborhood park for their jaunt

 Since I was diagnosed with cancer due to a lingering "side stitch" that would not go away, and only a few weeks later I suffered the blood clot, it is not surprising that I worried I would not be able to continue with my active lifestyle.  I still determined that I would get PT and do what I could.  I was very fortunate in the PT assigned to me...and he fully supported my getting back to what I liked to do.  So when I found that first 1 miler, I knew I would keep going.  And the support I got was tremendous.  My current goal is to be able to walk a 5k again by July...and my coach and PT think it is possible.  I am now walking, both on land and in water (especially warm water), doing stairs and strength and PT exercises.  I have been out on my e-bike and am now able to get on my bike trainer.  And I haunt the websites for shorter family walks and such, so I have events to lead up the next 5k. I've even broken a couple of virtual 5ks into 2 to 3 or 4 workouts.  Of course, I particularly lean toward events that raise money for particular causes...especially those that effect me or my family.

Upcoming:  Virtual (for me) 5k officially on May 14 (and broken into parts) Quack out Cholangio, which raises money for the cholangiocarcinoma foundation. 

Zachariah's Acres 1 mile family walk on May 21 which raises money for Zachariah's acres, an accessible outdoor space for disabled folks (I do this one in honor of my daughter, who lives with paraplegia.

The Carbone Race for Reseach 1 mile option. on June 4.  The Carbone Center is the Comprehensive Cancer center where I am being treated.  I formed a team for this race...it has in person and virtual  options  and I have formed a team called, oddly enough, Eat the Damn Cake. The team is open and anyone can join. 

And then, I'm hopping up to 2 miles with a local Father's Day 5k and family 2 miler which raises money for local programs in that community.

I completed the first official mile on April 9, 2022

Traveling is something we've missed for a while now, with the pandemic. We were just ready to start again when all of this happened.  But recently, given how well my treatment is going, we made a decision to work some travel back into our lives.  Travel has been one of our great joys...one of the ways we take a bite out of that figurative cake...for as long as we've been together.  So we are daring to go back to it in at least a small way. It helps that my doctor is on board and encouraging...a short trip to Arizona this month will be a trial run for our 25th anniversary trip in July. 

One of our last trips before everything blew up...Key West

I'm also finding the time to do things that I love to do, but rarely had time for when I was working.  I've read more books for pleasure in the last 3 months than in the previous 3 years, I think.  And while I used to craft for our costumes and my Etsy shop, I am now doing more of it and just for fun and to share with family and friends. The costumes WILL continue though! 

One of this year's favorite projects...a baby afghan for a friend

And the absolutely most important thing I have learned about eating the damn cake on this journey so far is that cake is ten times better if it is shared. How to share it would be a whole other blog post and I will save that for another day.  I will say this though, don't wait...eat the damn cake and find someone to share it with. 

The mile is my marathon

 

Glenda and I at the finish of my first and only marathon

Just short of 13 years ago, on May 17, 2009 I ran my first and only marathon.  It was an accomplishment of which I am possibly even unduly proud...and I always intended to repeat it.  Unfortunately I was injured the next year while training for my second.  Over the years with one thing and another it never did happen again, but I did many more half marathons and shorter distances as well as triathlons and duathlons. In fact, at last count, I had participated in 300+ races over the years since my very first 5k in 2006.

I didn't start out to be active and you can read about some of that in earlier blog posts.  I mean, I was an active enough kid....absolutely loved my Schwinn Hollywood with the pink streamers gifted to me by my paternal grandmother on my 7th or maybe 8th birthday.  And I played tag and mother may I and horses and all manner of running games with the neighborhood kids in elementary school and into Jr. High.  I had swim lessons (which I liked) and dance lessons (at which I was a miserable failure)...and even ice skated in the winter.

Me on the prized Schwin...the start of my triathlon career?

Coolest ice skater on the block in the zebra parka

But as I got older, I got less active, more a spectator (I was crazy for the local semi-pro ice hockey team in my town...the Waterloo Blackhawks) than a participant. In fact by high school a friend and I competed to see how slowly we could walk the mile test that we did in gym class twice a year.

For years I was the world's greatest indoors woman. In fact it wasn't until I was nearly 50 and working on my dissertation that I began to exercise in earnest again.  I did it to clear my head...but I got hooked.  Nearing my doctorate, I realized that a big part of my life was soon to be over...and there would be lots of empty time.  I decided to run a marathon.  I had only been running for about 4 years and had only run one half marathon.  But I made up my mind, talked to my coach and started training.  I had originally signed up for a different marathon, but ended up settling on the Green Bay Cellcom Marathon. It was close enough for my Madison family to drive up and see me finish.  Glenda was running it with me.  My plan was just to finish before the 7 hour cutoff.

I did accomplish my goal 6:43:48.  But what was really important was the experience...the scenery, the signs, the group that had an inflatable wall at mile 20, the run down the tunnel and into Lambeau Field and then back out to the finish, even the smart Alec that yelled at 24 "only 5 miles to go" (idiot) are all vivid memories.

On the run in Lambeau Field

But even more was the support of those at a distance. At the time that I did the marathon, I had a group I ran with when I was in Rhode Island, where I taught during the academic year at URI, called The Naragansett Running Association. I also had a group I ran with when I was in Austin with Glenda, called Riff Raff.  People from both of those groups, as well as other friends and family,  were tracking me. Glenda was also sending out social media messages along the way, and people were commenting.  As I hit the wall (closer to 15 miles in than 20, though thankfully I rallied to finish) she read me their encouraging comments, and knowing that they were there, not only following me, but supporting me, was everything in that moment.

In fact at one point to keep me going, Glenda asked for jokes to tell me.  I still remember one of them. And here it is: 

A pan of muffins were in the oven.  One muffin turned to its neighbor and asked, "Is it getting hot in here?"  The neighbor replied with a scream, "Oh my god, a talking muffin!"  

Now that is cute and kind of funny....but at mile 22 it was flippin' hysterical. 

Fast forward to now...things have changed considerably since the start of 2022.  In January, I was diagnosed with cancer, in February I had emergency surgery for an arterial blood clot in my left leg, I have also been treated for anemia and a small duodenal ulcer.  There are no classic marathons in my future.  However, as I have been seeing PT and getting back on track with healing my leg, I saw that the local Parkinson's 5k and half also included a 1 mile family walk.  I talked to my PT about it and said I wanted to do it (at that point I was struggling with a quarter mile) and he encouraged me to train for it, just as I would train for any race.  I told my coach this, and though I had put her on hiatus, she said she wanted to write me a plan.  So, I've had a Training Peaks plan with things like "walk .33 miles" in my workouts...and mostly I've executed it. 

In training...

Mentally coming back from this and training to walk a mile has been the hardest. Physically it has been a challenge, but mentally it is a marathon.  Thus #themileismymarathon. 

And now that marathon mile is coming up.  April 9 at 8:30 am central, I will toe the line...and just like the marathon so many years ago, I feel like I could use support.  I hope to complete the mile in under 40 minutes (which doesn't sound like much...but will be an accomplishment for me at this point in my journey.  Since this is much shorter than the 6:43 it took to do a full marathon, Glenda probably won't post during the walk...but I'm sure there will be posts before and after.  

So, if you so choose, here are some ways you can support me.  

Post in social media and tag me:

My twitter handle is @suellenphd2b

My instagram is @suellenadams1956

And if you are reading this where I post it you know how to find me on FaceBook

On twitter and insta, I am using the hashtags #themileismymarathon and #onesteponebreathonemile

If you want to do more:

Do a walk or a run with me virtually and post a picture...or dedicate a mile of your workout on April 9. 

Or if you are local it is not too late to sign up for the mile and walk it in support...you don't have to do it as slow as me...or just hang out and cheer for all the participants (not just me in the half, the 5k and the miles).

Thanks!

The importance of "me do it"

 

This is one of my favorite pictures of me, maybe two or three years old

There is little doubt that the hand I have personally been dealt lately kind of stinks.  In the grand scheme of things, the fate of one little old lady doesn't matter so much...and I am concerned about the world situation like everyone else. I am learning though, through all of this how feeling helpless to do things for myself, makes the burden of both my personal situation and the world even heavier. 

It is the nature of small children to be trying to do things themselves.  I remember when my kids were little and I would be trying to get them dressed and off somewhere, for example. and they would insist "me do it".  I often let them, which resulted in some of the most interesting outfits ever created, but I digress.

What I didn't realize, is that though I can't speak for other adults, it is also MY nature to want to do things for myself. This came as somewhat of a surprise to me.  For a long time I have been more focused on doing things in service of others....students, family, etc. I often thought, I just wish someone would wait on  me.  Be very careful what you wish for. 

Chemo tired

When I was first diagnosed with cancer and started chemo, I would get so tired...some of the meds drove my blood sugar through the roof which added to the effect.  And I was grateful that when I ran out of steam, there was either my wife or a family member around to help me. 

First walk post surgery

Then, out of the blue, I had an arterial blood clot in my left lower leg and had to have emergency surgery to repair it.  While they had me on my feet, getting to the bathroom and sort of shuffling down the hospital hall within hours, my mobility had (has) been seriously impaired. This came as quite a blow for someone who was doing races only days before.  

Needing help to get out of the chair and hobbling back and forth to the bathroom as my major form of exercise got old VERY fast. Relying on others for most everything else, though I appreciated the help and they did it gladly, made me feel whiny and demanding.  

The PT at the hospital told us the best way to to get the strength back was to walk (with a cane or on a bad day a walker), but it was sore and it seemed SOOOOO hard.  Still, I have been an athlete and I knew that nothing ventured, everything lost. It just doesn't do itself. 

What could I do?  Motivation was hard.  Well, first of all I asked for PT...which my oncologist actually ordered, though the vascular surgeon would have done so at the next visit.  They were in quite close contact. By late the afternoon that the order was put in I had a PT who is also a teacher/researcher at UW and who works with some complex cases.  He helped me learn how to understand the ups and downs in strength and ability that chemo and crazy blood sugars will cause. 

Being put through the paces at the PT gym

But even before that, I decided to call on my sense of humor, and my closet full of costumes.  Glenda and I did a rendition of "Putting on the Ritz" as Frankenstein and the monster (not included here) to honor my staples and walking with a cane.  

I put on rabbit ears and declared, "Rabbits, always hopping, never stopping!" as I limped around the kitchen table. 

Never stoppin'

As the cabin fever took hold, I decided to try a walk in the driveway in lieu of a one mile race I was signed up to do for a virtual challenge.  The race was called The Tin Man's Heart and, naturally there were costumes.  I have to wonder what people driving by must've thought, but mostly I was excited that I had walked for 5 and a half minutes straight and with lots of help made it back up the stairs and into the house. 

Tin man's got heart and so do I

Meanwhile, the PT suggested that for mental health reasons, as well as physical ones it would be good to get outside or at least out of the house more often, so long as we could do so safely.  Once we finally had a warm (50 degree) day, we did an outside walk.  Never was any walk more glorious!  I went 10 minutes without having to stop or sit.  Glenda followed with a wheelchair, in case. This walk gave me confidence that I could do it.  It made me start thinking about how I could carry things, do more things for myself.  It made me feel strong.

Best walk ever!

I started trying things, getting things for myself, taking a few extra steps whenever I got up to do something.  And my mood improved immensely.  I didn't feel whiny and demanding any more. I felt more able to cope with all the crazy.  Do I still need help?  Yes, notably with stairs and with getting my socks and shoes on and with showering because I'm not completely steady on my feet.  My stamina needs improving, I wear out quickly especially in the days post chemo.  But do I think I CAN do it and get back to at least some self-care and physical activity? YES YES YES and that makes all the difference. 

Bonus, today's mall walk, too icy to walk outside

Lions and Tigers and Bears, Oh My!

 It has been a while since I have written here,  and in the meantime I signed up for a Wizard of Oz themed challenge group....so I seem to be thinking in terms of Oz when I think of things lately.  And with what I am going to share here, I suppose I could also be talking in terms of twisters and flying monkeys, too. But Lions and Tigers and Bears and a dark and scary forest seem as good a metaphor as any.

Now let's back up to the very last day of 2021, which was intended to come in more like a lamb than a lion.

Run into the New Year 5k....aka New Year, New You (ewe) 5k

We had combined a local race with one of our virtuals, complete with a play on words.  It was cold, and I wasn't exactly feeling it, but intended to walk the race.  The first two miles were great...but I hit the skids on mile 3.  Hard breathing up the hills and a stitch in my side.  Still I finished wearing my goofy sheep hat.  

I had been struggling on and off since late summer with high blood sugar and while things were improving, I just assumed that this side stitch and subsequent back ache were more of the same.  The back ache subsided...the side stitch didn't.  It wasn't unbearable, but it didn't feel good. And by the 2nd, I decided I didn't want to wait to see my doctor. So off to Urgent Care I went.  

Blood tests and annoying poking and prodding followed (little did I know). At the end, they said that it was likely gall bladder and I should contact my doctor to set up an ultrasound to look for gallstones. They took one last blood test and sent my on my way.  

I was barely home when the phone rang. It was the doctor telling me the last test was considerably out of range and recommending that I go to the emergency department at the hospital. So off we went.  After much scanning and more poking and prodding, I was admitted with a suspected liver infection. After 2 days of scans and blood tests and biopsies I was sent home with a provisional diagnosis of liver cancer. 

One definition of trauma is when you get too much coming at you too fast. The first few weeks of January were traumatic. Finally seeing the oncologist, narrowing down the diagnosis, getting information on top of information, starting chemo....  I studiously avoided Dr, Google to avoid even more (and more confusing) information overload. The final diagnosis was Primary Intrahepatic Cholangiocarcinoma, a rare cancer that starts in the bile ducts. It does not appear to have any environmental or hereditary causes, in short a glitch in the matrix. If you want to know more the best source is the CCA foundation.  Only about 8,000-20,000 cases in the US ever year. The prognosis is guarded at best depending on a lot of things. I am not in any particular pain at this point, and am doing my best to move forward.

The emerald ribbon for liver cancers and the bracelet for the Cholangiocarcinoma foundation

Well, that covers the lions and the tigers, but maybe not the bears... because there is more.  In late January I had my first chemo treatment. It entails IVs, and about 4 hours of infusions including pre-treatments for nausea and 2 different chemo drugs.  It also includes a few days of taking steroids, which is a sure way to drive your blood sugar through the roof if you are a diabetic, which I am. 

First chemo. Channeling Ted Lasso and holding the rabbit Glenda supplied, affectionately called chemo bunny

I am hard to get an IV in and the steroids did their business on me...though oncologists don't get too excited about it until your sugars are miserably high.  Still I was functioning OK.  Was able to get out and walk a little.  Even went to the pool for a water run on the second day.  The third day I was really tired and out of it, felt like I wasn't hydrating enough. Feeling like I'd tweaked something in my left leg on my workout.

By Tuesday the "tweak" became really painful, and after consulting with the oncologist's office we went again to the ER...and spent 10 hours there. I remember distinctly in triage the doctor pronouncing that I had good pulses in both feet, so she wasn't too worried about a clot.  By the end of the day I knew that I had some arthritis in my hip and some disc problems in my back (none of this a surprise...fairly age appropriate)...and good news, no bone metastases.  They also did an ultrasound looking for veinous clots.  They decided that it was likely some inflammation flaring up, prescribed advil, heat, ice and sent me home.  

For 2 days I followed the plan, and it got better, then worse, then better, then worse...you get the picture.  Until Thursday after lunch.  Glenda noticed that my foot looked funny...kinda of purple and my lower leg was cold.  Another call to oncology to tell them, as much as ask them, that we were going back in to ER.  

Flashback to Tuesday, only this time the triage doc, a young man, said, "I'm not finding any pulses in the foot or the back of the knee."  And quickly apologizing as he reached for the pulse in the groin...which was strong and steady. I remember thinking, "Well shit, that can't be good." but not being being panicked until we were put in a room and they were trying to find pulses with doppler.  At that point I freaked out as evidenced by my blood pressure...and was quickly given Ativan, a powerful anti-anxiety med, and rushed off to the CT scan.

The rest of the night is remembered in flashes.  Someone declaring that they'd found it. Doctors and nurses dashing in, telling me that Glenda was being brought up to hug me before we went to OR.  Glenda's worried face saying they'd found something, but I would be fine and she would be there when I got back to the room. Rolling into the OR and then not much until I was back in the room. 

Back from successful surgery.

The it, that they had found was an arterial blood clot, which is rarer than a veinous one, and had not occluded anything by Tuesday. And thanks to Glenda's being observant and getting me there quickly...and the quick work of the vascular team at UW, it appears that the function in my leg has been completely or almost completely preserved. I'm so grateful. But it adds to the long road ahead. It was definitely another trauma...new information, new medication...too much, too fast. It has taken awhile to find our level.

I must say I have an excellent supportive team of family, friends and medical professionals.  I feel exceptionally fortunate to be in Madison with a medical school and an excellent comprehensive cancer center in the Carbone Center.  And, of course, Glenda....she is my rock. Having them doesn't mean this whole situation hasn't been stressful and traumatic, but it does mean we have support while feeling our way along.