Dawn’s colon cancer story

To think about when my story began, I guess it would have to be New Year’s Eve 2000. I went to a New Year’s Eve party in Connecticut (where I’m from) with my mother and step-father. That night my mom wasn’t feeling well. When I look back at the pictures, I can see that she did not look healthy. After the holiday, Mom saw her primary care physician who treated her for bronchitis and pneumonia. Early February came and her condition did not improve so they sent her to the hospital for x-rays and scans. It turned out that she had small cell lung cancer. Mom hated doctors and was not one to share information. Her attitude was positive and she would always say “when I get better we will...”

Somehow, I knew that was not the case. I will never forget the day her oncologist called with her prognosis. To this day, I call him Dr. Death because his bedside manner was HORRIBLE and he told me over the phone that my mom had cancer and she would be lucky to make it 6 months. As much as I disliked her doctor, he was right, Mom went through all the standard chemotherapy and radiation treatments, we even took her to Memorial Sloan Kettering Cancer Center for a second opinion. To no avail, Mom passed away at the young age of 54 on June 17th 2001 – Father’s Day – just about 6 months after her diagnosis.

The Parade article on young adults and cancer got my attention.

So how does this lead to my story? Here it goes. I don’t remember ever having regular bowel movements but it was never a problem that affected my daily life. I ate right, exercised and saw my doctor regularly. After my mom passed away I noticed my stomach was always upset and I experienced diarrhea, constipation, discomfort, and bloating. Of course, I ignored it – blaming it on the stress of Mom’s death. Then one day, while reading the Parade section of the Sunday newspaper, I came across an article titled “She Carries the Olympic Torch & Hope”. It was about young women who had colon cancer and wanted other young people to be aware of this deadly disease. (I didn’t know at the time but the article was about Molly & Amanda from The Colon Club.)  After reading that article (and just losing my mom to lung cancer) I decided to see my primary care physician.

Turns out, it wasn’t IBS.

After explaining all the symptoms, I was experiencing to my PCP, I was treated for Irritable Bowel Syndrome. About 2-4 months passed and I tried 3 different medications. None worked! My PCP then referred me to a gastroenterologist. During my visit, my gastroenterologist thought the same, must be IBS, but lucky he wanted to perform a colonoscopy just to be sure.

On April 18, 2002, my step-dad took me to the surgical center for my procedure. After waking up in a groggy state and eating some yummy raisin toast, my doctor seemed mortified to have to tell me and my step dad that I had colon cancer. When my mom was very near the end of her life, she would have these brief moments of consciousness. During one of those moments, one of the things she said to me was “Dawn Marie, you live a long, long life”. But here we were, me and my step dad, almost one year to the day since my mom had passed away, having to deal with the ugly battle again.

A bit more serious than chicken pox

As we were leaving the surgical center I said, “I hope she’s not calling for me already.” I don’t think, even to this day, I could believe I had cancer. When I told all my friends and family, they were in shock. It just didn’t seem possible.

No colon cancer in my family. (That I was aware of.)

I was young.

I was otherwise healthy?

After doing some research at my local hospital, I was referred to a group of surgeons that specialize in particular cancers. After coaching me and my family on the ins and outs of the colon, surgery was scheduled for May 2, 2002. This was not only my first colon resection, but my first surgery, my first time in the hospital, really my first time with anything more serious than chicken pox. The surgery went well, but 14 of 23 lymph nodes were involved meaning chemotherapy was necessary. I then saw an oncologist who gave me all kinds of numbers and survival rates and pretty much scared the poop out of me! My chemo regimen of 5FU and Leucovorin started on June 13,

2002.

My year-and-a-half of cancer hell

Although I felt crappy during chemo, it was not as bad as I expected. Then, the following week started my year and a half of cancer hell. I began experiencing pain just under my rib cage. It was so bad, it took my breath away. An MRI and biopsy discovered a lesion on my liver. I went to the same surgical group, this time with specialty in treatment of the liver. After this visit and discussions with my family and friends, we decided to go to a more well-known cancer center.

I was just a few months past my 31st birthday and wanted to do whatever necessary to see the best possible doctors for my type of cancer. In our opinion, being from Connecticut, we had two choices: Dana Farber Institute in Boston or Memorial Sloan Kettering in NYC. I put a call in to both facilities and said whoever called me back first is where I would go.

MSKCC called first and scheduled my initial appointments for July 11, 2002. After several follow up visits and discussions on the procedures, I was scheduled for a liver resection on October 1, 2002. They removed the lower left quadrant of my liver (about 1/3), inserted a hepatic pump to deliver chemo directly to my liver, inserted a metaport to deliver chemo to the rest of my body (until this surgery I had been receiving chemo intravenously – which was incredibly painful for me because my veins are very small) and removed my gallbladder (I was told the chemo through the pump would irritate my gallbladder so badly I would be better off if they removed it.) My hospital stay was expected to be 7-10 days. Well, 23 days later I was allowed to go home after being in and out of ICU for bleeding, clotting and problems with kidney function. Later it was discovered that I have a genetic blood disorder called Factor V Leiden that makes my blood susceptible to clotting (I now take Coumadin daily and go for blood tests about every 3 weeks to monitor my levels).

I often say if I did not go to MSKCC I might not be alive to tell my story, but unfortunately, I had a rough experience while receiving treatment and care. I struggled with keeping on weight (when I left there my weight had significantly dropped to around 87 pounds) and I ended up with C-Diff (a bacterial infection) after my lengthy stay. I was back at the hospital, put in isolation with yellow robes, masks and all, for nine days until the infection subsided.

Yet another setback … and surgery … and cancer diagnosis

The next two months involved many train rides back and forth to New York City for chemo (now consisting of FUDR, Dexamethasone and Irinotecan (CPT11)). Before I knew it, 2003 had arrived. On January 4, 2003 I was back at MSKCC with excruciating pain in my abdomen. They could not figure out what was wrong with me until finally, after two days of being pumped with pain medication, they found I was bleeding internally. They were 99% certain the bleeding was occurring from the hepatic pump and decided to take me in for emergency surgery. As they were wheeling me in they asked who they could call. The hospital was just over two hours from home and my step dad had just left me the night before. Well, he must have had some type of premonition because when I asked the nurse to call him, he was already on the van from Grand Central Station about two minutes away!

After this setback, I thought I was well on my way to recovery. But chemo got more and more difficult to withstand. I remember going to the chemo room and telling the nurses to give me my poison, and then there were times I told everyone I couldn’t take anymore. But I did, I finished, I don’t know how, but I did it. My final chemo infusion was on May 25, 2003.

The next step was my follow-up colonoscopy on June 20, 2003. And go figure, the colon cancer was back. My 2nd colon resection surgery was on July 15, 2003 and required a temporary ileostomy (area of the small intestine that protrudes from the abdomen and collects your waste in a bag.) Thankfully the lymph nodes were not affected this time so further chemotherapy was not required. On Septembet 18, 2003 I had the ileostomy reversed and my metaport removed – I was convinced this would be my last surgery and my last encounter with cancer therefore the port would no longer be necessary.

Moving to Georgia

In 2005 I moved from my home state of Connecticut to Georgia. I was a bit hesitant, scared, if you will. Looking back on that choice now, it was probably one of the best decisions I ever made. I missed my family tremendously (I still do!), but I had a new support group, a new life and had never been happier.

Going for the hysterectomy – #6

I wish I could say my health issues came to an end once I relocated, but that wasn’t the case. From April 2008 to July 2008 a fibroid tumor in my uterus had grown considerably. After receiving three doctor opinions, I decided to have a full hysterectomy on November 11, 2008 – not wanting to take the chance that my prior cancers would possibly be found in the ovaries later on. Because of my past surgeries, adhesions and scar tissue, it would be necessary to have my colon surgeon back up my gynecology oncologist during the operation. Sure enough, my colon surgeon had to remove areas of my colon that had adhered to the uterus and surrounding areas. Once again, a not so typical surgery or recovery. It had been 5 years since my last surgery, how easily I forgot. The good news though, NO CANCER!

Surgery #7 – Bowel Obstruction

And the story continues…on July 30, 2009 I woke up at about 2am with terrible pain in my stomach and vomiting. When I finally agreed to go to the emergency room, it was found I had an obstruction or kink in my small intestine. The doctors put me on IV stating these obstructions/kinks sometimes corrected themselves. The next day came and I was still in excruciating pain so they proceeded to send me for a CT scan that confirmed the obstruction and sent me straight into surgery that lasted from 10pm until 3am the next morning. There were two areas of my small intestine that were kinked and had to be removed as well as those darn adhesions/scar tissues. But good news again, NO CANCER!

Another bowel obstruction and new changes

Not done yet, on June 13, 2010 I was back in the ER with the same symptoms I had in July the year prior. Yup, it was another bowel obstruction! IV and NG tube down, the obstruction reversed itself, thankfully no surgery! After this ER visit I decided to change my diet to avoid processed foods and stick with natural and organic. Even today I haven’t experienced a bowel obstruction since (knock on wood) and can’t remember ever feeling better. Just the decrease in the number of bowel movements I have on a daily basis is beyond belief. To think I lived in such discomfort, what I convinced myself was my new normal, for 8 years!

7 surgeries in 7 years

All that being said, I had 7 surgeries in 7 years! I’m thinking LUCKY 7!

My story is long and I have left out many details like

• the letter writing and communication to get my insurance carriers approval to be treated at MSKCC (out of network provider)
• the numerous calls to my step dad in the middle of the night to take me to the hospital
• the trips to the local hospital to get me “drugged” up for the ride to MSKCC in NYC (local hospitals wouldn’t do much of anything else because I was being treated at MSKCC)
• My petite size and the hospitals having to accommodate me with child size apparatus.
• The vomiting and what seemed like never ending nausea from chemo, infections, internal bleeding or surgery recovery.
• The difficulty with IV’s and blood draws due to my small veins.
• The number of colonoscopies and scans I have had in 10 years!
• Learning how to eat again.
• Many days and nights alone in the hospital, in a strange place, praying to my deceased mom to help me get through this.
• Waking up in the recovery room not yet fully conscious, in pain and unable to talk.
• Telling my friends and family “I just want to feel good”.
• My remarkable support group!
• The relationships lost.
• The relationships gained.

Starting to recover & becoming an advocate for colon cancer

I still see my oncologist and PCP alternating once every six months. As of 2012 I am no longer having annual CT/PET scans or chest x-rays. In 2009 and again in 2012 I received a three-year reprieve on my colonoscopies – YEAH!

Up until the middle of 2009 I really didn’t talk about my cancer experience much. As I made new friends or acquaintances, it certainly wasn’t a topic of discussion. I almost felt like I didn’t want people to feel sorry for me. Then I began to volunteer at the Cancer Support Community. This was the first time I shared my story with folks outside of my comfort zone. I immediately saw the influence it had on people who were battling cancer, had survived cancer or those who were caregivers. The feeling I got from helping even a single person in this way cannot be put in to words; it is amazing and makes me want to continue talking to as many people as I possibly can. My involvement with the Cancer Support Community led to my introduction to the Colon Cancer Alliance and re-introduction to the Colon Club and events dedicated solely to colon cancer awareness. I was absolutely thrilled and honored to be a part of the 2013 Colondar and now a part of the extended Colon Club family. I do consider myself very lucky in more ways than one and trust my story will bring not only hope, but awareness!

Keep a positive attitude

My motto, pre and post-cancer:  always smile, keep a positive attitude and cherish each and every minute of each and every day. You must be your own advocate, listen to your body, be comfortable with and confident in your doctors and go for a second or even a third opinion to be sure you are getting the best care. Remember the everyday things some people take for granted. Believe in the angels that watch over you.

Someone once told me I have always had the spirit and the fight that nothing could stop and the strength and courage to take it head on…I can only trust that spirit will live on within me for many years to come.