Main Menu

Living With Stage IV Colon Cancer, With Jana Downing

Jana Downing

Living With Stage IV Rectal Cancer, With Jana Downing

Jana’s Story:

I was diagnosed with Stage 4 colon cancer on October 30th, 2014 after having complained of rectal bleeding and thin stools to my primary physician for close to a year. Due to my age, 39 at the time, my symptoms were originally discarded as likely hemorrhoids and I was not referred for a colonoscopy until after a lot of time had passed and symptoms did not resolve. Once I had the colonoscopy, they found a near obstructing tumor in my sigmoid. An immediate CT scan revealed 3 tumors in the liver, one of which over 5cm, as well as several indeterminate lung nodules. I had just turned 40. I was urged to start immediate treatment to avoid colon obstruction. I got opinions at Swedish Cancer Institute on First Hill as well as Seattle Cancer Care Alliance, and both teams recommended neoadjuvant chemotherapy followed by liver resection and more chemotherapy after. Since Swedish had earlier availability for my treatment, I opted to start treatment with them at that time.

My first CT scan after starting chemotherapy showed very good response to Folfox+Avastin, and after 8 cycles I was scheduled for a combined colon and liver resection which took place On March 25th, 2015. I had very quick recovery and was able to resume chemo within 3 weeks completing all 12 cycles of Folfox.

I had my post-treatment CT scan 1 month after completing chemotherapy and was told that I had no evidence of disease and I was to be scanned again in 3 months with no additional treatment. However, after reviewing my radiology report myself I noticed that it made reference to increased lung nodules. I went back and reviewed previous reports and noticed that my pre-existing lung nodules had grown slightly while I was off chemo for my liver/colon surgery. Having read a lot about my cancer since my diagnosis, I became very alarmed and asked my oncologist for reevaluation and referral to a thoracic surgeon. I met with the thoracic surgeon 2 weeks later, but he opted to wait for my next scheduled CT scan at 3 months to determine whether a surgery might be needed. Both my oncologist and the surgeon were of the opinion that the chances of these nodules being cancerous was fairly low in my case. I spent the 3 months worrying and doing everything possible I thought I could do to help keep my cancer under control, which included eating better, multiple supplements, and daily hiking. I also continued reading and educating myself on everything related to colon cancer.

Unfortunately, my October 2015 scan confirmed my suspicion, and noted that 2 lung nodules in my right lung had almost doubled. I was quickly scheduled for a surgery, which took place right before Thanksgiving 2015. During the surgery, another tiny nodule was found and all 3 were confirmed to be cancerous. According to my surgeon, that was bad news of recurring disease. On a positive side, my lymph node biopsy around the lungs was negative.

After another 6 weeks after the surgery, I had another CT scan. It listed another 5 nodules – in both lungs – and made reference that they have increased from the previous scan in October. What this meant is that the 5 nodules had been there in October, but were missed by the radiologist at that time. It also listed a new larger nodular opacity right at the resection site, concerning for local recurrence. I felt devastated. It was my oncologist’s opinion, after meeting with my thoracic surgeon and the tumor board at Swedish, that my disease was recurrent and systematic and I needed to be placed on chemo for life. They would no longer offer me a surgery.

I was not satisfied with my prognosis and treatment plan at Swedish and again sought a second opinion at SCCA. Dr. Andrew Coveler was recommended to me as someone who would be a good fit for my own personality and tendency to ask a lot of treatment questions, so I requested an appointment with him. After reviewing my scans and records, Dr. Coveler was not convinced my disease was systematic, because the majority of the nodules had been there and I had no other disease recurring elsewhere, coupled with the fact that my CEA had been in normal range (1.7- 2.2) ever since my liver was resected. However, to be sure, he wanted me to have another scan in 8 weeks to determine if new disease would pop up. If not, he would refer me to Dr. Douglas Wood for thoracic surgery on each lung.  Again, while waiting, I focused on eating better, daily hiking and supplements to try to help keep my cancer under control.

The next scan in March 2016 showed slight increase in some of the existing nodules but no new disease, clearing me for referral to Dr. Wood. Dr. Wood recommended an open thoracic surgery of my left lung first, and surveillance and reevaluation of my right lung to determine if another surgery there would be feasible as well.

I had my left lung resected at University of Washington on April 25th. 3 out of 4 nodules removed were cancerous. My follow-up CT showed new suspect nodules in the lung that was just operated on, and my right lung surgery has been put on hold pending verification that those are cancer. Unfortunately the nodules were too small to call either way on the CT scan. My next CT will be in Mid-September and I remain off treatment till then. Again, I am spending this time doing what I can researching my disease, eating better and hiking daily. I am also looking into back up options such as the laser lung surgery available in Germany and the UK which allows for the removal of multiple lung metastases.

About me

I am a 41-year old Creative Director, Graphic Designer, photographer and fine artist. I have been married to my spouse Daryl for 15 years and together we have two children – Jasmine, 13 and Jeremy, 8. I have lived in the Seattle area for 11 years, after having spent years on the East Coast and in the Midwest. I am originally from Sofia, Bulgaria.

After my cancer diagnosis, I rekindled my passion for fine art and started actively painting again, something I had put to the side while being busy with my Creative Direction career. I have recently started showing my art and participate in the Kirkland Art Walk. It is my goal to have an art exhibition benefiting local colon cancer patients through a foundation I have started to work with closely – Washington Colon Cancer Stars. My artwork Big Blue Hope was also recently selected for the 2017 Expressions of Hope Calendar.

Almost 2 years into my diagnosis, I still work full time and have not stopped doing anything I used to do before diagnosis – to the contrary – I make a conscious effort to enjoy every moment and get the most out of each and every day. One goal I have is to walk or hike outdoors every single day. I do so after work in one of the many Seattle parks or beaches, and in the Cascade Mountains over the weekend.

I also became passionate about helping other colon cancer patients anywhere in the world through online support groups. After participating in a number of existing groups, in late 2015, I started a Stage 4 colon cancer support group on Facebook, which in less than 6 months has more than 450 members. I try to use my recently acquired knowledge of the disease to help others ask the right questions and navigate their own treatment options with more ease. I clearly remember how scared and isolated I felt when I was initially diagnosed, and our group is there to give people an immediate access to first-hand experience and many success stories of others who also face a Stage 4 colon cancer.

101 Things to Do When You Survive, With Greig Trout

o-GREIG-TROUT-facebookI first learned of Greig’s story via a tweet posted by the good folks at Bowel Cancer UK. As I dug deeper to learn more about Greig and his story, I was astounded to learn of the similarities of our cancer journeys. Like me, Greig is a two-time cancer survivor. As a child, Greig had a rare form of pediatric kidney cancer known as a Wilm’s Tumor; so did I. Like me, Greig lost a kidney to the disease, and like me, Greig is a Bowel Cancer (as it’s known in the UK) survivor.

Greig’s biggest challenge was not the disease itself or the side effects from treatment. It was the debilitating depression, P.T.S.D., that he faced post-treatment. He said the depression was worse than both cancers combined. Greig decided he needed to get away and see the world, and from this experience, 101 Things to Do When You Survive was born.

From participating in an 85 mile AngelRide to support children with cancer and other serious illnesses, to learning the Tango in Buenos Aries, from learning to skydive to learning to surf, Greig has checked off many things from his Anti-Bucket list.

The Tango

Skydiving

Surfing

Singing on Stage at the Sydney Opera House

Dealing With Cancer After Treatment Ends, With Dawn Eicher

Dawn Eicher

Dealing With Cancer After Treatment Ends, With Dawn Eicher

Dawn Eicher was the first young survivor interview for The Colon Cancer Podcast, back in March of 2015. Now 2 years N.E.D. (No Evidence of Disease), she returns for a second stint on the show to talk about life post-treatment.

In this interview, Dawn and I discuss the unique challenges that survivors face after treatment ends, both physical and emotional. We talk about survivor’s guilt, P.T.S.D. and how to face the “new normal.”

DKE_5750-1-5

No You Can’tcer, With Melissa Marshall

IMG_1462Melissa Marshall, the founder of The No You Cant’cer Foundation, was inspired to write Cancer’s First Fight song and start The No You Cant’cer Foundation after her own battle with colorectal cancer.

Melissa was first diagnosed in September of 2013 while prepping for a hip replacement surgery. A life-long dancer and singer, Melissa assumed the rectal bleeding, fatigue, and weight gain were all a result of thousands of high-energy performances. After months of escalating bleeding, constipation, and irregular bowel movements, she confided in a friend about her struggles. The friend urged Melissa to speak with a colorectal surgeon who, in turn, immediately paused the hip replacement surgery and sent Melissa for a battering of medical tests to determine what was causing all of these irregularities. After a colonoscopy, a tumor the size of a golf ball was found very low near her sphincter. It was cancerous.

After being diagnosed with stage III colorectal cancer, Melissa began the arduous wait to see a colorectal specialist that could offer her the care she needed to survive. Melissa ended up receiving a colostomy bag on November 14th, 2013 with little chance of a reversal. This meant that, for the rest of her life, she would be living with an ostomy bag. As she began chemotherapy on January 31st, 2014, as well as undergoing radiation from April to March of that same year, Melissa found her body ravaged by their effects. She was frightened that due to the ostomy bag, and the months of chemotherapy, she would never again resume her singing career.

However, Melissa beat cancer on July 17th, 2014, regained her strength, and began preforming, once again to rave reviews. From her victory over colorectal cancer, she was inspired to record Cancer’s First Fight Song, “No You Cant’cer”. From that liberating piece of music, The No You Cant’cer Foundation was born in an effort to inspire through song, raise awareness about colorectal cancer, and get rid of the stigmas surrounding the life-saving ostomy bag. During her battle against cancer, Melissa found her strength in the love of her friends, family, and other cancer fighters. Now, as she is free from cancer, Melissa sees it as her opportunity, and duty, to empower those affected by cancer and help them find their voice to say, “No You Cant’cer”!

The focus of this foundation is to not only inspire, but to educate. Colorectal cancer is not seen as “glamorous” and the ostomy bag is seen as something to be ashamed about. The No You Cant’cer Foundation believes that colorectal cancer deserve the same amount of research and visibility as the more mainstream cancers and that the ostomy bag is a life-saving prosthetic that helps people lead happy, healthy, lives. This is why the “It’s in the Bag” publications have come into effect. These informational pamphlets will be nationally distributed in hospitals and doctors offices. They will answer the frequently asked questions, dispel ostomy bag myths, and get readers in touch with some of the best resources available both locally and nationally.

Join the fight against colorectal cancer and ostomy bag stigmas today!

Nate Allen Says He Beats Colon Cancer by Walking

Nate Allen

Nate Allen Says He Beats Colon Cancer by Walking

July 2015 while my wife and kids were visiting family in Florida I stayed home to finish off work projects.  Within days of their departure I began to experience a dull throb in the center of my abdomen directly below my sternum.  At work, I was quickly becoming scatter brained and forgetful, and when I got home I literally showered and flopped onto my bed in pain.  So I called my wife, and she urged me into urgent care.  I was given antacid, and told to see my GP in 2 weeks if they didn’t work.  They didn’t work.  I called my GP the next day and got in ASAP within a day.  He smiled saying we were going to have an extraction of my gallbladder and sent me across the street for a CT scan.  That was Wednesday.  I picked up my wife and kids on Friday, and by Saturday it was just too much.  We went to bed and I told my wife I was going to the ER to have my gallbladder out and don’t get up and come down in the morning..  I told the ER doc I had just been scanned, and lets get this gallbladder out its killing me!!!  A few minutes later, he came back after looking at my scan and said I had cancer is there anybody you can call.  My wife was down in 10 minutes to hear it with me, you have stage 4 colon cancer with metastatic disease to the liver.  I asked how many tumors were in my liver and he said too many to count.  Shot me full of Dilaudid, and sent me on my way..that began the journey that led me to where I am at today.

Wide spread panic ensued.  I called my PCP first thing Monday morning, he hadn’t even seen the scan yet.  On the phone, he didn’t really know what to say, other than its cancer, and its bad.  They got me into a surgeon quickly, which was great.  The surgeon apparently took one look, and told me she was sending me to an oncologist.  By this time I was already beginning my research of my disease.  I googled the disease, as I imagine most do, and came across a website called The Colon Club.  In these comment threads I found quite literally everything and anything I needed to know through years of information passed on by hero’s of the past.  Everything from treatments, procedures, likely courses of treatment….outcomes…everything…  So I went into my Oncologist, extremely sick, full of despair from the early knowledge I had acquired, and scared to death.

My Oncologist immediately filled me full of love and hope.  I have been truly blessed with a passionate oncologist, who beat stage 3 breast cancer and has recurrent MS.  She is my cancer hero.  Her background as an immuno-oncologist was a double blessing.  She had come to my small town, tired of the big teaching hospitals, to escape the vast expanses of the big cancer centers, as she deals with her own health.  She knew right away I had came across knowledge online, and basically calmed me down with her persona.  Hope had started…and it hasn’t stopped.  I asked her about my liver, how many really??  She guessed 100.  I asked if I could get to NED…she said anything is possible.  So boom, within 2 weeks of my diagnosis, currently incurable stage 4 cancer I was getting the Hail Mary cytotoxic chemotherapy, Folfoxiri.  In bad shape, I was drugged heavy with Dialaudid, and after infusion 1 made it home.

While I lay there after my first infusion of this very strong medicine, sad, depressed, scared, I began searching for Facebook support groups, of which some were just chaos.  As I began the group thing, I was also searching for Hope online, and I came across something I had never tried before..a podcast called The Colon Cancer Podcast.  So I listened to my first podcast ever..and Hope really was activated inside.  Stories of Hope and Survival!  Exactly what I needed to hear.  Around this time I was also learning about the benefits of exercise, how it can possibly slow recurrence.  I felt I needed to get up and move all of a sudden, maybe this was my ticket!!  My second infusion of Folfiri came, and when the pump came off 46 hours later, I loaded up some Colon Cancer Podcasts and began my new favorite hobby…walking.  I walked.  Slow, very slow.  And I sent a message on Facebook to the guy running it to say thanks.  His name is Lee, and he helped to save my life, and I’ll always love him for that.

Also right in the mix of my sickbed google searches I came across a blog.  I had never read a blog, but this came up i my search so I checked it out.  It was this crazy Hopeful scientists named Dr. Tom Marsilje, and he described in his blog his Colorectal cancer journey.  That was it.  That put me over the top of any bad place I was mentally in.  Between the encouragement I received from Lee, and this awesome blog written by a guy so full of Hope, how could I not get up and move!

After 2 rounds of Folfoxiri, I was moved onto Folfox and 5fu…I kept on going…by my 5th infusion, my oncologist had put me on maintenance.  My CEA had dropped from the 230s at dx to just 3.5!!!  By now, I had found some groups that were well managed with rules, and I liked those.  I began to find great friends in Blue Hope Nation and Colontown, as well as what I consider my home group Colorectal Cancer Survivors Unlimited.  I had found my friends, who were like me..young, positive, happy!  I stated tracking my walks one day on my phone, and I couldn’t believe how far I was going, so I went out and bought a fitbit to be a legit exerciser.  I started throwing out invites in the groups to join me on Fitbit, lets walk thru cancer together and step on it!!!  Id guess we have around 20 great folks walking together daily in different little groups we all have going together now.  I find it best when I see my cancer friends and non cancer friends in groups.  Some of the non cancer folks don’t even know who they are against..its awesome!!  My last two PET scans have been clean!!  Calcified tumors in the liver, and plenty of em, and a dead primary.  Ive never had a surgery other than the port.  My goal is to get to the other side untouched, and I’m talking trials currently with my Onc, actually have been for quite some time.  She enjoys it, and things im nerdy, which I suppose I am.  Ive had 4 upticks in a row, however with my CEA, and we decided to beat the beast to the punch and I’ve been through 2 cycles of Folfiri/Avastin and 5fu.  Im still walking, smiling and laughing.  Im also looking at trials early, so we shall see where my adventure goes.  I like the idea of trial jumping, fits my personality.  I’ll keep you updated!

All of my fervor has driven me to 5k competitions.  Not intentionally.  I planned on the UNDY and the GYRIG for the summer, so I began walking faster..and faster.  I have won my first two non cancer 5ks walkers.  This Saturday will be my first Undy, and I cannot wait to meet others like me!  Us early onset folks gotta stick together, and there is just none of that in my small little town.

Ive also began to advocate.  I was recently offered an opportunity through the Colon Cancer Alliance to Washington,  DC to advocate for small community infusion centers which are rapidly disappearing due to unseen consequences of the ACA.  Hopefully cancer isn’t a partisan issue, we know it isn’t, but I don’t think they know from my recent experience.  We shall see.

On that note, I hope to grow my advocacy work if the Lord decides that’s what is best of me.  I am a man of God, and he looks over me always.  I retired out of my union at the age of 44, electrical work no longer a viable option for me due to chemo side effects of the 5fu..my hands are often so cracked I cant bend.  But that’s okay, too, I am happier in many ways than I have ever been, and will keep doing my best to be the City on the Hill.

0 New

Never Too Young for Colorectal Cancer, With Courtney Forget

Courtney Forget

Never Too Young for Colorectal Cancer, With Courtney Forget

Courtney Forget had digestive issues for about a year, but was busy planning a wedding to the love of her life, trying to buy their first home, and teaching art to elementary school students (K-5), so she just assumed her symptoms were due to stress. She went to her GP in September of 2014, and they wrote her off and said to eat a healthier diet.  Fast forward to the first week of the 2015 summer break and she’d been having severe abdominal pain and sleeping 80% of the day! She knew something wasn’t right and called and demanded a colonoscopy. After her visit, she was diagnosed with Stage 3c colorectal cancer. Married in October, bought her first house in May, and diagnosed with cancer in July. She was 29 years old.

Thankfully she was set up with amazing doctors at the Cancer Center In Gainesville, VA. She’s been on six weeks of chemo and radiation, she had her tumor removed and an ileostomy bag put in, and then chemo every other week for six months. She has two treatments left, and her ileostomy take down surgery in August, and life is looking pretty great! She started #CrayonsForChildrens, a program where people donate old and broken crayons and she melts them down into fun new shapes and donates the new and improved crayons to Children’s Hospital in DC and Falls Church. She had to take a year off from teaching to get better and She’s excited to return to the classroom this fall!  She also plans to volunteer at Children’s Hospital to work with young patients and will read stories to them and create art projects with them to brighten their day.

Celebrating Survivor Week, With Darin Hosier

Darin Hosier

Celebrating Survivor Week, With Darin Hosier

From Michelle Kennedy, Examiner.com:

Coach Darin Hosier was diagnosed with stage 4 colon cancer in November 2012 and only days later he found himself in surgery as the doctors worked to remove the tumor pressing against his back. Darin had known that something was wrong for quite some time and when the pain became unbearable, Darin underwent testing where he was shocked to discover that he had stage 4 colon cancer.

Coach Darin’s message to everyone is simple, “Get a colonoscopy.” Colon cancer is a slow moving cancer. He most likely had cancer for 5 to 10 years before being diagnosed, but without a colonoscopy it could not be properly identified.

Since then Darin has undergone surgery and twelve rounds of chemotherapy.

Drawn to the sport by watching Dorothy Hamill, Coach Darin started skating when he was 10 years old and skated competitively for 10 years, earning himself a U.S.F.S. gold medal in figures and freestyle as well as a U.S.F.S. National medal. After completing his competitive career, he went on tour for a few years until he finally fell in love with Seattle, where he relocated and began his coaching career at the Highland Ice Arena in Shoreline, Washington.

Darin has been coaching at Highland for over twenty years and has coached elite skaters on national and international levels. Just days after his first surgery he boarded a plane for a major competition, just to be there for his students. He loves the sport and his students and has continued coaching even while receiving treatment.

“It’s part of my therapy. It’s part of my recovery. The more normalcy I have in my life, the better I feel.” Darin explained. Darin loves the process of coaching and comes up with innovative ways to teach his students. Known for being a hard worker with a positive attitude and warm personality, it is no wonder why so many are gathering to raise funds for his treatment.

When asked how he felt about the benefit being put on for him, he said, “It’s surreal, I keep thinking it’s for someone else,” he laughs. Darin explained that he is truly overwhelmed by the amount of support that he has received. He is so grateful for his best friend, Corrie Martin who is directing the benefit, the Highland Skating Club who put together the foundation, the Highland Ice Arena staff for being so supportive and the numerous people that have built webpages, Facebook pages and have contributed in so many ways. Darin seems the most touched by the number of his students who have poured out their love and support for him.

The ice skating community has truly rallied around him to give back after all that he has given to the skating world. In many ways Coach Darin sees himself as just a regular guy, who loves gliding across the ice and who is currently faced with adversity that is not meant to defeat him, but rather for him to overcome. It is clear through this foundation and this event, that Coach Darin is certainly not fighting this battle alone.

See Darin in action while he shares his story:

Coach Darin from Amir Zahed on Vimeo.

 

Talking Medical Marijuana, With Dr. Laura Porter

Cil3sgGWUAABaZIIn this episode I spoke to Dr. Laura Porter, Patient Advocate and Medical adviser to the Colon Cancer Alliance.

“Medicinal marijuana use is currently legal in
23 states and the District of Columbia. As more states approve marijuana use for medical indications, physicians will be asked by their patients for more information regarding the risks and benefits of use.” JAMA Oncology, published online March 17, 2016. We agree, so we want to cut through the noise and provide information for those of you considering this complimentary treatment option or for those already using it
for issues like chronic pain or nausea.

Interview With Colorectal Cancer Survivor, Elan Freedy

Elan Freedy

Interview Colorectal Cancer Survivor, Elan Freedy

In this episode of The Colon Cancer Podcast, I interviewed Elan Freedy. Elan was diagnosed with rectal cancer at the age of 42. Now, N.E.D. (No Evidence of Disease), he devotes his spare time to advocacy work and talks about the need for early screening:

“Primary care physicians still only ask if you had incidences of cancer in you family – but for colorectal cancer, more nuance is needed. In my case, my father had pre-cancerous (adenomatous) polyps in his 40s, which means I probably should have started screening in my mid 30s. Pre-cancerous polyps are actually stage 0 cancer – but nobody really asks these questions. Adult children need to be talking to their parents and know if their parents had pre-cancerous polyps, and what age they were found; then discuss this information with their primary care physicians to determine whether they need early screening.”

Diagnosed With Colorectal Cancer at 28, With Kevin Hays

evin Hays

Diagnosed With Colon Cancer at 28, With Kevin Hays

Kevin Hays was diagnosed with Stage IIc colon cancer at age 28.  He went through surgery and chemo.  After finishing chemo he ran in the Buffalo Undy Run to boost awareness and afterwards volunteered to help with organizing for the the next year (this year!).  Working through the Buffalo Undy Run | Walk planning he helped resurrect the Blue Bash in Buffalo to broaden our reach with a new audience.  He also developed a new awareness initiative targeting the construction and real estate development industries called the Blue Hope Hard Hat Initiative (#protectyourass) as a way to help promote the 80% by 2018 initiative. To raise awareness, hundreds of construction workers and site managers in the Buffalo area are sporting the blue hard hats emblazoned with a comical, but serious message: “Protect Your Ass.” Since early January, he’s sold 600 of the blue hard hats at cost, about $10 apiece, with a goal of helping to boost colorectal screening rates.

To learn more about the Blue Hope Hard Hat initiative and to order your very own Blue Hard Hat, visit:

protectyourass.net

%d bloggers like this: