June 2021: Hitting Big Goals On Cancer Mountain … T-Minus 2 Weeks To Clinical Trial

I remember asking during my very first ‘chemo teach’ meeting, back in November 2017, “Can I keep riding my bike through this?” My oncologist had just explained to me the plans and logistics for my initial chemo protocol. In preparation for my Stage IV cancer surgery, I would be getting a steady cadence of chemotherapy infusions. It would be ‘1 week ON 2 weeks OFF’ over the 4 months approaching the surgery. Each session would involve a long 5-6 hour ‘chair sit’ session at the cancer center, immediately followed by another 48-hours connected to a mobile-infusion-device that I would carry around with me and wear at home. It all sounded dreadfully awful – really daunting and grueling and it confirmed many of my worst thoughts. I was in fact, no doubt about it, the newest resident of cancer mountain. I had crash landed on it, as people most do, with levels of disorientation, uncertainty, disbelief, fear, and panic like I’d never experienced before. Then, to my surprise, at the same time I was learning about the very dark dangers of my cancer and extreme treatment plan, my doctor’s answer to my question turned out to be the very first really hopeful thing I would hear on this very long, very tough path.

Her answer was … ‘Yes and you really should if you can! Staying physically active through treatment is highly recommended. It is a key common denominator we see in people who are surviving cancer today. You should keep riding – as long as you feel you can do it.” She went on to explain that exercise during cancer treatment has been proven* to:

  • Reduce your risk of depression and anxiety
  • Decrease the amount of time you need for hospital stays
  • Make your treatments more effective at destroying tumor cells
  • Improve your chances of surviving colorectal cancer, other cancers, and other diseases

Once I heard this, I decided immediately that cycling would be my main form of exercise. In addition to its medical benefits, I knew cycling could give me a sense of calm and control amidst all the chaos that comes with cancer, some feelings of forward progress on my fitness, and an endless outlet for new goals, connections, and activities I could look forward to in the future. And so, with my doctors’ blessing and green light, I started pedaling … and pedaling … and pedaling.

Fast forward to present … 3.5 years+, 4 surgeries, 25 rounds of radiation, and 46 rounds of chemo later … My cycling exercise has delivered on all of those benefits and much more. What started out as a few miles here and there to clear my head of ‘chemo fog’ has become something much bigger that consistently brings together my family, friends, acquaintances, and fellow cancer-fighters. We support each other and we support important cancer-research-related charities. This past weekend, I passed Mile 4000 on my e-bike*. (That means I only need 21,000 more to go the equivalent distance of one full lap around the world! ) And, later this month, my clinical trial treatment will launch on Monday, June 28th. My doctors at UCSF say my regular cycling exercise has helped put me in the best possible condition I can be in for this very big step. They call me ‘A Walking Miracle And The Future of Medicine‘. I am living proof of what is possible with today’s new and progressive cancer treatment solutions. That is a strong source of hope and inspiration for everyone in the cancer community and that’s something we are working to share near and far.

Mile 4000 – June 13, 2021

It’s T-Minus 2 Weeks to My Clinical Trial Launch
Our breakthrough clinical trial is approaching fast*. We will keep you posted on our progress through this blog. You can subscribe below to received notifications of all our new updates.

Thanks for all your support from near and far. Mady, Nat, and I are forever grateful.
We welcome you to share my story with anyone you think it may help.
Get educated.
Get screened.
Support cancer research.
Keep rollin’,
MC

Reference Sources:
* ASCO / Cancer.net – Exercise During Cancer Treatment – Article Link
* Cycling Weekly – How Much Exercise Do You Get On An E-Bike – Article Link
* PACT Pharma / UCSF Clinical Trial – Past Blog Post Link




June 2021: Countdown To Blast Off For Our UCSF Clinical Trial … T-Minus 4 Weeks

Chemo Round #46 is now in the books – 6/2/21

If you are extremely lucky like me, at some point during your time on cancer mountain, a breakthrough will come along offering you a potential path to safety. Later this month, thanks to some very recent, major advances in Immunotherapy, I will be receiving an experimental, *potentially curative* treatment for my cancer. This is a truly amazing and very fortunate place to be after 3.5+ years of very rough climbing and tangling with the beast called cancer. It feels like we have reached a very promising clearing and solid launch pad off the mountain and out of the woods. Should this clinical trial be successful, it will be a major advance for treating 5 types of major cancers including Colon, Colorectal, Liver, Lung, and Head & Neck cancers.

A breakthrough like this was both our biggest hope and a key assumption when we first set our approach plan after my initial diagnosis back in late 2017. In order to address a metastatic cancer like mine (Stage IV, Colorectal), we’ve needed a combination of many things to come together in our favor. While time and new solutions were obvious key requirements, we also needed a world class team to design and execute my treatment regimen. Thankfully, we have had that in my wonderful crew of healthcare heroes at UCSF Cancer Center in San Francisco.

UCSF Bakar Cancer Hospital – Where medical magic happens

Since Nov 2017, my amazing team there has expertly worked our plan. In simplest terms, they aimed to arrest my cancer, keep it under tight control, and hope a relevant breakthrough arrives in time to get me to a safe place. They have worked seamlessly across their Oncology, Radiation, Surgery, Immunotherapy, and Clinical Trial departments and workgroups to incorporate and combine all their deep expertise wherever and whenever needed:
1) They have been vigilant about studying, developing, and tracking the latest cancer breakthroughs that might help my case.
2) They have leveraged all the existing tools we’ve had to fight cancer for the past 100 years or so. (Those tools are surgery, radiation and chemotherapy. And, I’ve endured a lot of all three through my 4 surgeries, 25 rounds of radiation, and 46 rounds of chemo!)
3) They have successfully ramped me into this promising new clinical trial with PACT Pharma by balancing my ongoing treatments with the 6-month, multi-stage, multi-step onboarding process required for trial candidates.
It is no stretch to say that without my UCSF team I would not be here today. My family and I could not be more grateful or humbled by their continued efforts on our/my behalf.

Here’s my clinical trial schedule at a high level.
Over the next 3 weeks, we still have to tackle some final steps before my ‘big shot’:
– CT scans and tests … 6/15
– Biopsy, a baseline for the clinical study … 6/18
– Prep Chemo / 4 more rounds … 6/22, 6/23, 6/24, and 6/25
– The Big Shot … 6/28 … Should this clinical trial work as expected, the customized T-Cells provided by the ‘big shot’ will attack my cancer anywhere it may be hiding … and, I will not need any more surgery, radiation or chemo.
– Monitoring … 6/29 through June 2036 … Yes, you read that right. The study will run for 15 years and I will be tracked throughout.

So when I tell you I am the most fortunate, most grateful cancer-fighter you will ever know, now you know why. As one of my UCSF team members said to me some time ago, “Mark, you really are a walking miracle and the future of medicine”. I believe that is true and so should you.

Blast off in T-Minus 25 Days … and I say “Bring it!”
Thanks for all the support from near and far.
Mady, Nat, and I are forever grateful.

Get educated.
Get screened.
Support cancer research.
Keep rollin’!
MC

P.S.
For more detail on my UCSF/PACT Pharma Clinical Trial … visit this link.


Cycle for Survival 2021 … Supporting MSK & Beating Rare Cancers … My Message to Team Salesforce and All CFS Riders: THANK YOU!

Here’s a message I just sent to all my Salesforce colleagues who are participating in the 2021 Cycle for Survival event tomorrow in New York / New Jersey … on the field at MetLife Stadium.

Hey team,

I am really proud to be a Cycle for Survival Ambassador this year and I want to personally thank you for supporting Memorial Sloan Kettering (MSK) and their work to cure Rare Cancers. 

While my cancer is not rare, I’ve learned through my 3+ years on Cancer Mountain that all cancers are connected in someway. In addition, I strongly believe everyone that has gone before me on this brutally tough trail … that might be you, a friend or family member who has battled cancer … has made my path along with the paths of millions of others easier.

I am living proof of that. After 44 rounds of chemo, 25 rounds of radiation, and 4 surgeries, I am now in a potentially curative clinical trial with UCSF Health. Mine is a story of hope, inspiration and innovation made possible only by the decades of groundbreaking work and advances pioneered and delivered by MSK and other leading cancer institutes.

So again, I thank you and I’m grateful for your all efforts. Make no mistake, those efforts will be felt worldwide throughout the cancer community far beyond what you experience tomorrow on MetLife field. What you are doing really matters today, tomorrow and well into the future.

With infinite gratitude,
Mark
San Francisco, CA

If you’d like to support the fight against Rare Cancers,
you can donate through Team Salesforce at this link >> Donate Here.

Taxi Crafts … Our Best Friend

With heavy hearts we share the news that we said goodbye to Taxi over the weekend. Those of you who had the good fortune to meet “The Mayor of Petaluma” know he simply radiated unconditional love and “orange power” to any and all he encountered. The endless supply of comfort, hugs, smiles and happy memories he gave us will last forever. Thank you for sharing in the love of our sweet dog and for all your support from near and far.
With love, 
Mark, Mady and Natalie

Thank You, Taxi
For the joy you brought into our lives
And how you taught us about what’s really important 
From the bell at the back door signaling the start of each day
You’d need to race to the lawn, but first, you needed a very long hug
Circle the property 
Pause on the porch 
Take in the fresh air 
Listen to the birds
Check on the household 
Time to hug again
And a rhythm to the day 
Walk time, meal time, nap time, play time, treat time
and always another hug time
Taxi, we will miss you so very much

Taxi Crafts
August 9 2009 ~ May 1 2021

April 2021 – Now Ready For The ‘Arnold Schwarzenegger Terminator Cells’, Our Clinical Trial for CRC Enters Key Stages

Hi Friends,

It was a very big day for us at UCSF yesterday (Monday 4/26).
I handed-off a bag of the red stuff for conversion into “Arnold Schwarzenegger Terminator Cells”. Everything went great. The modified cells should be ready by mid-June for the big shot back into me. Here’s where we are in this groundbreaking process and what it looks like from a high-level:

Source – PACT Pharma w/ Team Crafty Notation

This has been a long (and anxious) process, starting last October. Once I get the injection of customized T-cells in June, it’ll take about another 4 months to know if this has worked. The main idea here is the new ‘terminator cells’ will attack my CRC cancer anywhere I’ve got it. And, should this clinical trial work, it will be a very big breakthrough for my type of cancer as well as 4-5 others including Colon, Liver, Lung, and Head & Neck Cancers.

I’m filled with gratitude by so many things:
– The support from everyone on “Team Crafty”, both near and far. We certainly feel the power of all your prayers, white lights, good vibes and positive mojo pointed our way. We consider these things our secret weapons in this fight. Please keep ’em comin’!
– The expertise, support and sacrifice from everyone on my UCSF, St. Joe’s and PACT Pharma medical and healthcare teams. Never a day goes by that I do not consider how fortunate I am to have both the access and means to get such incredible healthcare. It’s not a stretch to say it is the best in the world.
– All those in the cancer community who have traveled this dark trail before me. I truly believe each and every one of them, both living and passed, has made my path easier.
– The chance to give back. After nearly 4 years on cancer mountain, considering myself ‘a taker’ all the way to this point, our clinical trial presents an opportunity for me to give something back to the cancer community.
– My incredible “Team Crafty” co-captains, my wife Mady and daughter Natalie. This challenge is tougher on them than me in so many ways. And, if you ever wonder where I get my strength and optimism, you do not need to look any farther than these two. Their love is very powerful medicine.

Next Up On The Treatment Trail

May:
Chemo Rounds (#44 and #45)
Clinical Trial Biopsy
June:
Chemo Rounds (#46, #47, #48, #49)
Clinical Trial Step 5 = The Big Shot!

Please share our story with anyone you think it may help …

It’s important for everyone to know that a serious cancer diagnosis today is not necessarily a death sentence. I am living proof of that. Treatment options are much different and much better than in years past. Also, you are not alone if you’ve just been diagnosed. Support is everywhere on cancer mountain. Ask your doctor about the resources that are available to you.

Get educated.
Get screened.
Support cancer research.
Keep rollin’,
MC

P.S.
Here are some great views that helped me pass all the time on cancer mountain during April (aka in waiting rooms, on scanning machines, and at testing sessions) …

Conquer Cancer Orange Power & Unicorns – Walking to UCSF for CT Scans – Every Mile Is A Gift
UCSF Nurses Scheduling Board – Long Live the King. Tribute to Chadwick Boseman
My Girls – Celebrating Nat’s big B-day with Uncle Dan DaDalt
With Taxi “The Dude” Who Seems Increasingly Unfazed By Our Pre-game Talks
Some Petaluma “Conquer Cancer Orange” Power For All My Fellow Cancer Fighters. You Are Not Alone.





“March Madness” Team Crafty Style … Celebrating Twenty Years, Going Fifteen Rounds In The Radiation Ring, Making That Big College Decision, Scheduling Vaccines, And Waiting On Clinical Trial Green Lights

Hi friends,
It’s been a really, really busy month and I’m happy to report everything continues along on very solid and good tracks for us. I must admit though all this activity has been crazy, hectic, and stressful for everyone on and around “Team Crafty”.

Celebrating Twenty Years:
Mady and I celebrated our 20th anniversary early in the month. Between my daily treatments over at UCSF, we were able to sneak away for a really special morning together down by the Golden Gate Bridge. We chose this spot because it’s just a stone’s throw from where we met. And, well, this picture says it all. I offer it as further proof that I am the luckiest damn guy you know!

Mady and Mark celebrating 20 years together.

Going 15 Rounds in The Radiation Ring:
For the last days of February and the first 2 weeks of March, I visited the UCSF Radiation Oncology Center for radiation treatments like a ball player showing up for daily games. It was 15 straight business days in all. And every day included a 45-minute ride on an incredible machine I dubbed “The Varian Beast”. (Check it out here – short video demo – 2 min) Across the U.S. and in other developed countries, most all cutting-edge cancer centers have machines like this and they are extending life for cancer patients worldwide. My UCSF team has educated me that this type of radiation oncology is advancing very quickly with increasingly positive outcomes for patients of all kinds. They are seeing more and more patients living longer as radiation technology improves. The cancer science behind this approach is simply amazing. Radiation is targeted specifically to tumor areas interrupting the cancer cells’ ability to multiply. In my case, we used ‘the beast’ to address some cancer “regrowth” in areas we’ve known about for some time. This is the second time we’ve used this approach in my 3+ years of cancer treatment. And our expectation is that we should not see cancer in these targeted areas for at least another 1.5 to 2 years ahead. From a patient POV, I can attest type of precision-targeted radiation treatment is a great advance over what radiation treatments used to be 5 to 10 years ago. There’s no doubt it was still a grind and a very difficult 3 weeks both physically and mentally. But, we keep rollin’ on!

Here’s a great shot from our final day of my treatment cycle with my UCSF radiation oncology healthcare superheroes. I’m forever grateful for their help, support, and expertise … and also how they let me blast my own music in the treatment room!
(Here’s our Spotify playlist of all 12 hours: “Team Crafty UCSF Radiation Sessions 2021 = 15 Rounds With The Varian TruBeam Champ“)

Day 15 Finish Line With My UCSF Healthcare Heroes And The TruBeam “BEAST”

That Big College Decision:
Closing out March also meant making some very big college decisions for my daughter, Natalie. She has made her selection and is now sharing her news. All I can say is that Mady and I are over the moon thrilled for her. She’s pursuing her musical theater dreams and she’s already made so many great strides positioning herself for independence and success. Sometime in the not too distant future I know someone will ask us how this all came about. I know our answer will be … “It all started when she sang a love song, on stage, in public, on roller skates and wearing a yellow fish suit. The kid has had the theater bug from a very early age.”

2016 The Little Mermaid – Cinnabar Theater, Petaluma, CA

Scheduling Vaccines … #GetTheShot!
I am really encouraged by the assurances of my UCSF doctors who are whole-heartedly behind getting any of the currently approved vaccines that are available to us/you. It’s worth a mention the Pfizer vaccination in particular has a fascinating backstory tied to the cancer community. In brief, there are 2 decades of cancer research behind what ultimately became the Pfizer Covid-19 vaccination. Ozlem Tureci, who co-founded the German company BioNTech with her husband, pivoted the company’s many years of cancer work to address Covid-19 upon learning of the virus and its pandemic threat. This is an amazing illustration of the type of breakthrough innovations and technology advances that are resulting in new, life-saving solutions in the medical community today. You can read the full BioNTech story here: “Scientist behind coronavirus shot says next target is cancer.” (Associated Press, 3/19/21)”

#GetTheShot … MC’s First Dose, March 27th

Waiting On Clinical Trial Green Lights
Next up in my treatment regimen is the long-awaited clinical trial with UCSF and PACT Pharma. However, much like the path of an Enterprise IT project, after 5 months of research and development, we are now down to a final “Go / No Go Decision“. This decision comes down to whether or not our solution developers can prove what they have built in the labs will trigger appropriately against my tumor. We expect to know where we stand on this by mid-April and will keep you posted. Please keep all those prayers, positive vibes, white lights and great mojo coming our way!

Closing Out March Madness With Strong Encouragement FOR YOU!
I can’t emphasize enough how important it is for you to stay on your own cancer screenings – even during the pandemic. Please read my story in the About section. I welcome you to share it far and wide. Encourage all of those around you to take some very simple steps to stay off cancer mountain. Trust me and my family when we tell you “It’s a brutal place that you should do all you can to avoid!”
Get educated.
Get screened.
Support cancer research.
Keep rollin’. – MC

P.S.
Thanks to all who supported our March fundraising effort for Colon/Colorectal Awareness and the Conquer Cancer, The ASCO Foundation. We are forever grateful for your help and support.

Please remember to take a few minutes whenever you can to acknowledge your own healthcare heroes and the cancer fighters close to you. We’ve got a number of fun and supportive designs in the TC SWAG shop to help you bring some smiles and cheer to those you know. Trust me, they will really appreciate it! – MC

Team Crafty SWAG Shop

http://www.TeePublic.com/Stores/TeamCrafty … Proceeds Benefit Conquer Cancer Foundation, Conquer.org

Celebrating 3+ Years On Cancer Mountain & Sharing My Story For #WorldCancerDay

Hi Friends,
During the past few weeks I’ve been participating a daily countdown challenge to #WorldCancerDay, FEB 4. Each day I get an email with a suggested activity that I can use to help others better understand cancer and engage in positive actions to fight our global cancer burden. This particular challenge really hit home and sparked a lot of thoughts for me: “Today, think about your own personal story and journey. Why are you passionate about this issue? Why is it important? Who are you doing this for?”

Let me try to tackle those questions here …

My Story and Journey
Down at UCSF Cancer Center, they call me “a walking miracle and the future of medicine”. My doctors and nurses frequently tell me my story is something people everywhere really need to hear. I’m living proof that cancer breakthroughs and great healthcare technology can do amazing things. In brief, my medical team is using a variety of current and proven cancer-fighting tools (surgery, chemotherapy, and radiation) to keep my cancer in close check while we evaluate new and emerging breakthroughs that might be right for me. We set this general plan in motion back in late 2017 and it has worked out amazingly well. In the next few months, I will fully enter a new immuno-oncology clinical trial that holds great promise for my type of cancer as well as a number of others. In the meantime, for much of February, I’ll be getting daily radiation treatments to keep one of my known and recurring cancer spots in check.

Why Am I Passionate and Why’s This Important?
Well the first part is really simple and obvious; I’m still here and I’m rollin’ strong! (I’ve learned the hard way that there’s nothing like a life-threatening diagnosis to spark your passion.) The second part is more complex. I feel it’s important for everyone to realize I am among the most very fortunate cancer-fighters you will ever meet. That is because I have advantages that most people in the cancer community do not have and they are:
1) local access to perhaps the greatest cancer care in the world through UCSF Health.
2) exceptional healthcare insurance through my employer, Salesforce.com.
3) an incredible support network of family, friends, and co-workers that spans the globe.
Without any of one of these three key ingredients, my family and I would be in a very, very different situation. The Union of International Cancer Control (UICC.org) backs me up with this fact sheet. Around the world, there is very extreme inequality in cancer care. Depending on your economic station and location in the world you may not have access to even the most basic resources and technologies. That’s just not right, I’m sure you’ll agree. We share my story with just about anyone who will listen not only to help give other patients hope and show what’s possible with great cancer care, but also to shine light on the extreme differences in quality of care available throughout the cancer community. That’s why I’ve become a patient advocate for CONQUER CANCER, the ASCO Foundation, and UICC.org.

Who Am I Doing This For?
Family first … I work hard every day to be strong and to be there for my amazing wife, Madelyn, and my beautiful daughter, Natalie. They are my world and they are with me every step of the way on this tough path. In fact, in our house, we say “We have cancer”, not “Mark has cancer”. It is their love that gives me purpose and the ability to take on anything we encounter on cancer mountain.
Along with other patients, our caregivers and our healthcare heroes … Throughout my extensive time in cancer centers and hospitals over the past few years, I’ve come to recognize I can do something many other cancer patients can’t. That is share my experience and show what’s possible … through cancer research breakthroughs … through the application of fantastic medical expertise … and through the love and support of family and friends. It’s my hope our story can be source of hope and inspiration for anyone and everyone out there on cancer mountain. It’s a really tough neighborhood and we are all in this together.

Be healthy. Be smart.
Get educated. Get screened. Support cancer research.
Keep rollin’. – MC

P.S.
Here’s a short video expressing our thanks to all of you taking action on #WorldCancerDay.

—- You Can Join Our Fundraising and Cycling Effort for #WorldCancerDay HERE —-




Happy New Year! … Let’s All Keep Rollin’

Happy New Year everyone!
I think we’re all glad to put the very challenging year of 2020 behind us.
We were able to make the very best of ours with your help and support!
Here’s a look back …

I’m looking forward to an exciting year ahead on the treatment front.
Here’s a short overview of where we’ve been and what’s in store for the months ahead:

Thanks for all your support from near and far!
Be safe. Be smart. Be grateful for your health.
Get educated. Get screened. Support cancer research.
Keep rollin’!
Crafty

P.S. Ride with us on #WorldCancerDay, February 4th. You can participate from anywhere in the world on any type of bike or trainer — indoor, outdoor, solo or group. All are welcome!
Have a look >> https://fundrazr.com/SalesforceOhana.OpenRide

CALLING OUT AROUND THE WORLD! Virtual Cyclists Everywhere, We Need You FEB 4!

Blog Post: Week #165 ~ December 2020

Hi friends,

I’m really excited about this event and I invite EVERYONE to join me
Not kidding, I mean EVERYONE!

This upcoming World Cancer Day, February 4th, I’ll be participating in the World Cancer Day Solidarity Challenge, a VIRTUAL CYCLING event for cyclists all over the world. Organizers expect this to be the world’s largest virtual race to date with over 60,000 participants from everywhere!

The ride itself will be a series of 45-minute ZWIFT competitions with riders competing on their indoor bikes / virtual trainers. There will be 6 different races / start times worldwide:

  • Ride 1 … 6 pm Eastern Australian Time – Sydney (GMT/UTC +11)
  • Ride 2 … 6 pm Singapore Standard Time (GMT/UTC +8)
  • Ride 3 … 6 pm Gulf/UAE Standard Time (GMT/UTC +4)
  • Ride 4 … 6 pm Greenwich Mean Time (GMT/UTC +0)
  • Ride 5 … 6 pm Eastern Standard Time – New York (GMT/UTC -5)
  • Ride 6 … 6 pm Pacific Standard Time – Los Angeles (GMT/UTC -8)

I am working with my company, Salesforce.com, to recruit a sizable group of riding teams. We are inviting all friends, family, customers, partners and employees to join us – wherever you may be in the world.

Here’s how it works:

  • Start your own team within our global “Ohana” group.
  • Recruit a team of 4 riders from family, friends, or company colleagues and
    race to honor or remember the cancer-fighters close to you.
  • We aim to have over 100 teams in each of the 6 time zone races.
  • That’s works out to total of over 2400 riders worldwide.
  • All teams pledge to raise donations to fight cancer.
    * Team Pledge Amount = $5000 U.S. (combined riders’ total)
    * Rider Pledge Amount = $1250 U.S.
  • 100% of donations raised will go directly to the Union for International Cancer Control (UICC.org), the world’s oldest and largest cancer fighting organization which has over 1200 member organizations throughout the world. 
  • Here is where you can sign-up and donate: >> https://fundrazr.com/TeamSalesForceOhana2021

I hope you’ll join me in this effort to fight cancer!
Cancer organizations everywhere really need your help now more than ever.
Keep rollin’,
Crafty 🙂
a.k.a. The most fortunate, grateful cancer fighter you will ever know.
a.k.a. The man called ‘a walking miracle and the future of medicine’ by his UCSF nurses.

P.S. I hope Santa brings you an indoor cycling trainer and ZWIFT account for Christmas!

And now, I’m gonna really pull on your heart strings …
Please watch this: https://www.youtube.com/watch?v=MPo2hScfRoo

Week 161 on Cancer Mountain: Some Pain and Set-backs, But Thanksgiving Starts Now for Team Crafty!

Petaluma, West Side – November 17, 2020

Hey friends,

A little forewarning, this post is a bit long and it is going to take you on wild ride of lows and highs. These past few weeks have been some of my toughest on cancer mountain. For 3 years now, having skated past many close calls and the expected painful path most colorectal cancer patients experience, I liked to call myself ‘an imposter in the cancer community’. That changed for me this chemo cycle (#43) and I will not be saying that anymore. I think now it’s more appropriate to say “I’m a climber and a trailblazer on cancer mountain, aiming for a cure”. Here’s what happened during the past few weeks to prompt that change.

RECAP:

  • 10/27, Chemo Round 43: All started out fine on Tuesday, 10/27. We began Round 43 with the typical 1-hour infusion of Panitumumab chemo down at UCSF. In addition, the same day, we started the other half of my chemo cocktail, a 14-day schedule of oral Capecitabine chemo pills.
  • 10/29, Biopsy Procedure: Two days later on Thursday, 10/29, we performed the liver biopsy required to get me in the Clinical Trial. It was to be a pretty straightforward procedure aimed at getting a sample of my liver tumor for study by both the Clinical Trial and UCSF Pathology. Think 1 sharp stick in the chest, under CT-imaging guidance, zeroing-in precisely on my bad stuff. It’s billed as pretty standard outpatient stuff with little expected post-procedure fallout, a relatively simple 40 minute procedure. We expected 3-5 days of a little discomfort that could be handled with a little Tylenol. But, after 3-years on cancer mountain with 40+ rounds of chemo and multiple surgeries under my belt, I am not your typical patient.
  • 10/30, Trip to the ER: Friday morning, 10/30, I awoke to find the pain meds from the procedure had worn-off completely. I was in severe pain (7-8 on the UCSF 10 scale) and I asked Mady and Nat to take me to Petaluma Valley Hospital ER. At the PVH, they were able to stabilize and address my pain issues as well as perform X-rays and CT Scans to ensure the biopsy procedure did not leave or create any unexpected complications. Mady was our superstar problem-solver throughout, coordinating communications between PVH and UCSF across all our key players, and driving like Danica Patrick cross-town to PVH. I was back home and resting by mid-afternoon.
  • 11/1 – 11/14, Rocky Balboa Goes Down: I spent the next two weeks mostly horizontal dealing with the biopsy recovery, pain medications, and extreme fatigue from chemo Round 43. My chemo dosages carried on throughout all of this with morning and evening dosages as called for by my 14-day chemo cycle regimen.
  • 11/13, CT Scans on Cancer Status: On Friday the 13th we did additional CT Scans down at UCSF. Thwarting any Friday the 13th bad mojo, we spotted a rainbow on the drive into the city and my CT technician was named Angel. Note, I did have this very same powerful combination of a rainbow plus a CT tech named Angel once before. It had happened 3 years ago to the very day, on 11/13/2017, for my very first big scans up in Santa Rosa, CA.
  • 11/15, Back On My Feet: Finally, with Round 43 chemo complete, pain meds removed, and my energy levels on the rise, Rocky Balboa* finally got up off the mat and started to resume some regular activities. I was able to get on my bike Sunday and do a little 1 mile loop around the neighborhood. Compared to the expected recovery time of the biopsy, mine turned out to be more like 12-15 days and it continues.
  • 11/16, Amazing News: My CT Scan results from Friday, 11/13, show that my tumors have been significantly reduced in size by the last 3 chemo cycles (… a total of 42 days, 3 infusions, and 336 oral chemo pills over 3 months). And, that has earned me a ‘chemo vacation’ like we had at this very same time last year. There will be no more chemo for me until 2021WOOHOO!!

LESSONS LEARNED:

There were a lot of take-aways from this rough patch. I’ll try and keep it short to the very big ones. And, I should qualify this is all based on my own experience. It’s important to note every cancer patient has their own unique experience and challenges. Each of us needs to find what works and doesn’t for us and support teams in our own ways.

  • Primary Caregivers Face Difficult Challenges As A Result of COVID-19 Restrictions.
    It wasn’t lost on Mady and me that the biopsy out-patient process, like many other procedures, has been compromised by COVID-19. Today’s restrictions and precautions for caregivers and visitors often mean the patient gets dropped-off, checked-in, and deals with everything solo, once inside the hospital. That’s not perfect when it comes to hospital discharge, special instructions, medical read-outs of what to expect post-procedure, etc. — especially when the patient is still floating and buzzing on procedure meds. It is really critical that the patient’s primary caregiver, not just the patient, be given a detailed recap of the procedure, any red-flags issues to watch for post-procedure, and a clear plan of action should things go south. This should be a key step you and your provider agree upon ahead of any out-patient procedures like this.
    Resource articles:
    1) COVID-19 Information for Cancer Caregivers – Dana-Farber Cancer Institute
    2) Taking Care of Someone with Cancer During COVID-19 – Memorial Sloan Kettering Cancer Center
  • Managing Physical Pain.
    Through this biopsy and chemo round we met Mark, the Hulk*. I’m not sure if my eyes turned green like David Banner’s when the severe pain hit, but it felt like it. I had a combination of soft tissue pain running across my chest and referred pain in my left shoulder. Very thankfully, we learned my pain was all related to the biopsy procedure and not from any advance of cancer. Even so, it made me dig in to investigate the different types of pain cancer patients may experience. UK Cancer Research says there are 5 types of cancer pain – Nerve, Bone, Soft Tissue, Phantom and Referred.
    Resource articles:
    1) Different Types of Cancer Pain – UK Cancer Research
    2) Facts About Cancer Pain – American Cancer Society
  • Managing Emotional Pain.
    Friday morning’s pain just brought out the worst in me. I was hurting, frustrated, irritable, angry, and a monster to everyone around me. It was only after Mady got me to PVH ER and the pain meds IV got going that I settled down. Later, like Bruce Banner when he returns from The Hulk form, I had those awful feelings of ‘what just happened?’, ‘who got hurt?’, ‘how could I become and be such a monster?’, ‘how could I be so mean to the people I love?’. With that came a lot of sorrow, guilt, and shame for me. Meanwhile, my girls, Mady and Nat, had to deal not only with me but their own fears and emotional pains as well. It was really tough on all of us … especially them. This is the incredibly hard job of primary caregivers, not only in emergency situations, but all the time. Volumes have been written on this topic for both patients and caregivers. I encourage you read up on this and take proactive steps to help you and your family prepare for and manage the challenges cancer will put on your bodies and your emotions.
    Resource articles:
    1) Feelings and Cancer – National Cancer Institute
    2) Emotional Impact of Cancer – Univ. Michigan
  • Managing Fear, Uncertainty, Anxiety.
    This could be the toughest challenge of them all. Through our cancer experience, my family works hard to remember that ‘anticipatory grief’ is little more than lost time and energy. So first and foremost, try not to spend time worrying about endless ‘what if’s’. You will drive yourself and your support team crazy. Focus on facts and try to worry only when the time is right and merits it. That said, you will have times when fears, uncertainty and anxiety are very, very real. Like physical and emotional pains, volumes have been written about managing fears and anxiety too. I encourage you to read up on it and develop your own approach, habits and behaviors. Find ways that work for you to visualize good outcomes and support any and all positive feelings you can muster. Beyond that, I will say from personal experience, I believe there is something very, very deep in all of us that comes to the surface when we are really up against the wall. A few years ago, my dear friend, Joey Dumont, shared some thoughts about this as it relates to mediation and spirituality. We talked about visions some people experience through visualization and mediation exercises. I mentioned I do some deep breathing as I try to go to sleep each night. He explained some believe that moment right before you fall asleep is a very special meditative state. Sometimes I’ve experienced cool moments when I either see something just before I drift off or later in my dreams. This happened to me when I was turned away for chemo Round #41. I was really concerned and racked with worry later that night. In 40 prior rounds of chemo, I’d never yet had my ‘come back another time’ card punched. That night, as I did my breathing exercise, I felt something very deep rising in my chest. It was strange and strong and it was clearly two forces … Now this may sound super crazy, but I envisioned one force looked like Clint Eastwood’s gun-slinger from High Plains Drifter and the other force looked like Don Knotts’ jittery Barney Fife from Mayberry. As these two forces sat across a camp fire … the gun-slinger said very cooly to the very shaky Barney Fife ‘hey, I got this, why don’t you go get some sleep?’. I awoke the next day and decided that was my Courage talking to my Fear. I know they are both in me. And when the time is right, they will work together and fight together to protect me.
    Resource articles:
    1) Anxiety – American Cancer Society
    2) Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope With Cancer – CancerCare.org

ALL THAT SAID
Thank you for reading this far!
Amazingly, we are on track and we keep rollin’!
I am through Round 43 of chemo.
I have a ‘chemo vacation’ until the New Year.
UCSF has the tumor tissue needed to get me into the Immuno-Oncology Clinical Trial.
Despite all the hard challenges we have faced, we are exactly where we hoped to be.
So Thanksgiving starts RIGHT NOW for Team Crafty, near and far!

We are forever grateful for all your support!
You all carry me, Mady, and Nat when we need it most.

Get educated.
Get screened.
Support cancer research.
Keep rollin’!
Crafty

P.S.
* We’ve added some Incredible Hulk and Rocky products to the Team Crafty Shop.
We hope you find something here to the brighten the spirits of cancer fighters close to you.
There are lots of different messages and products, all focused on promoting cancer awareness, humor, love and support. We donate all affiliate commissions to Conquer Cancer, the ASCO Foundation.

Thank you to the ER Team at Petaluma Valley Hospital!!
Please support Conquer.org and Cancer Research: Breakthroughs Help Millions of Cancer Patients Like Me Keep Rollin’
Now Available at the Team Crafty Shop – Design by Flex Studio