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Faces of Blue: Karen Smith

By March 10, 2013Faces of Blue

FOB-KarenSmith1 My name is Karen.  I work full time for an accounting service firm.  I have a 23-year-old daughter who lives with me.  Together we share a two-story apartment with two cats that are spoiled rotten.  I’ve been divorced for 22 years, and I have to say I’ve enjoyed my single life.  I can do what I want, when I want.  Never in my wildest dreams would I expect anything to go wrong with my health.  I was diagnosed with Stage III metastatic colon cancer in September 2010 at the age of 45.  It started with abdominal pains.  I made it through a day of work, but things got worse during the night and after a call to my family doctor I was referred to the emergency room.  I figured it was merely constipation, and after an enema I’d be sent home and all would be fine.  That wasn’t the case however.  An x-ray showed a blockage in my colon, so I was prepped for a colonoscopy.  My worst fears were confirmed – I had a malignant tumor.  My maternal grandmother had colon cancer, and I’ve been told it can skip a generation.  She passed away in 1965, just three weeks prior to my birth, so she never got to see me.  I find it ironic that I have the same cancer as she did.

A laparoscopic surgery was planned to remove the tumor, but the surgeon had to cut me once he saw that it was the size of a baseball.  The cancer had spread to four lymph nodes which also had to be removed.  A month later I began a six-month IV chemotherapy regimen of 5-FU and Leucovorin.  I became weak as I had no appetite and a constant bad (metal) taste in my mouth.  I couldn’t tolerate anything cold to drink.  It felt like swallowing glass. Nothing flavored was good either. For someone who enjoys ice cubes, drinking room temperature water was disappointing.  I discovered through trial and error that I could occasionally tolerate food items containing a barbeque or tomato sauce.  I lost weight, and my physical stamina took a beating.

That chemo was done in March 2011 and I thought it was over.  I had the chemo port removed and was ready to continue on with my life.  In August, I began to experience weird things.  A CT scan in September showed an abdominal mass and I had to have a biopsy. It was cancerous. I was referred to an oncology specialist in Pittsburgh and in October I had a second surgery. From the time of the scan to the surgery date, which was only about five or six weeks, this tumor grew to the size of a football.  The weird things going on – shortness of breath, not being able to eat more than a few bites at a time, bloating, trouble bending over, coughing – all worsened during that time.  My clothes became tight and I actually appeared pregnant. I felt horrible.  For two weeks prior to the surgery I slept on the living room recliner because I was too uncomfortable in my bed.  The surgeon was worried about finding a lot of disease, but fortunately I only lost my ovaries in addition to the huge mass.  It was no surprise that immediately after the operation; all those quirky symptoms were alleviated.  The enormous tumor was obviously pressing against all of my internal organs.

A second round of IV chemo consisting of Erbitux and Camptosar was started in December.  I immediately broke out in a rash which covered my face, neck, upper chest and back.  It initially spread over my head, and it was painful.  My hair also began to thin out.  I never went totally bald, but my hair became very thin, and I estimate more than 50% hair loss.  Finding hair on a daily basis all over your bed and on the bathroom floor after styling it was difficult to deal with.  In addition, having the rash made me very self-conscious.  I hated going out in public and to work.  I felt like everyone knew something was wrong with me.  A dermatologist prescribed creams and medicated shampoos which alleviated the rash some, but as long as I was on the chemo it would not entirely go away.  Towards the end, this round started to wear me down, and I couldn’t wait to get home from a treatment to go to bed.  After I was done, I spoke with my hair stylist who recommended an over-the-counter shampoo that chemo patients or people with very thin hair use.  To my surprise, after only a couple months use I noticed big changes.  My hair was growing back and soon became thick and healthy like normal.

In June 2012, only a month after the IV chemo, I was put on Xeloda, which is chemo in a pill form.  It’s a nice change not being connected to an IV for a few hours every other week, but pills are not without side effects.  More commonly, Xeloda can cause the hands and feet to dry, peel and crack, referred to as Hand and Foot Syndrome.  I use Udder Cream religiously now.  I didn’t have any skin problems, but after a few months on the pills I began to notice swelling in my knuckles and difficulty using my hands.  Simple things like washing dishes, opening a container of milk or a jar, using a can opener, all became a chore.  After some online research I spoke with the pharmacist and then made a call to my oncologist’s office.  Apparently hand and foot syndrome can also consist of painful joint swelling.  I began taking Vitamin B6, which helps with circulation and applying ice to my hands.  I was told I could lower the dosage of the Xeloda, but I was also starting to feel very tired and having more nausea so I took a month’s break from the pills to give my body a rest.  The finger joint problems aren’t totally gone, but there is improvement.

FOB-KarenSmith2Cancer and its treatments take a toll on you, mentally and physically. I’ve never been cancer-free since my initial diagnosis. I had a liver spot from the beginning. I have CT scans every three months with a PET scan annually. The most recent PET was in January 2013. The results were not what I wanted to hear. My disease is progressing. My CEA level had spiked to a 20. I had developed a lung spot which has grown a little in size plus two more nodules have appeared. My liver has additional disease in it. There is a “protocol” of chemotherapy where they begin with a certain medication and if that doesn’t work they go to the next one in line, and so on. I was basically told that they’re running out of options for me. I was referred back to Pittsburgh to speak with a group that does clinical trials. To be honest, I don’t know that I’m willing to do that. I turned down that option. Fortunately the FDA released a new chemo pill called Stivarga in September 2012. I recently started taking those so now a waiting game begins to see if they can halt the progression. For now, my oncologist is concerned with keeping my liver functioning well. If need be, I may be referred to a liver cancer specialist and there’s a treatment procedure called SIRT (Selective Internal Radiation Therapy). Tiny radioactive spheres are injected directly into the liver via a catheter. To be honest, I’m more scared now that I have been through the first two years of my cancer. Hearing that things are shrinking or remaining the same is far better than hearing that disease is spreading. For right now, I’m living with my cancer as best I can. I’m able to drive myself around, go to work, and go places. I’ve learned to identify my body’s signals and know when I need to stop, slow down, or take a day to rest and relax. My motto has become “take one day at a time”.

Learning you have cancer certainly changes your outlook on life.  Knowing that your life can be cut short is a scary thing.  Looking back, I had symptoms that I ignored.  The bloating was shoved aside as a woman problem and my bowel movements were not a cause for concern because I was having one every day.  Seriously, who really examines their excrements?  I wrote a funny blog on my Facebook page about “Checking Your Poo”.  I made it humorous; however I wanted to convey a very serious warning.  The color, size and quantity of your stool can indicate that something is wrong.  Don’t waive anything aside.  I questioned myself that had I sought medical advice sooner, would my cancer have been a Stage III?  It’s too late to think about that now.

One would think that dealing with cancer alone is hard enough on a person. Upon learning I have cancer and recovering from a surgery and going through chemo, I had to witness my mother’s health decline due to Alzheimer’s. She passed away only five months from my diagnosis, and she never knew I had cancer. Even though I was weak from treatments, I never let that deter me from visiting her at the nursing home. Her death was very hard on me, as I’m the “baby” of five children. I’ve had a couple “angel” moments the past couple years, and I believe she’s watching over my shoulders.

In February 2012 I was hospitalized for a week after a routine CT scan showed I had a pulmonary embolism (blood clot in my lungs).  I wasn’t exhibiting the typical symptoms and the doctors and nurses couldn’t believe I had a PE.  I thought my shortness of breath was due to the fatigue caused by chemo.  I was driving myself around, and I wasn’t pale in appearance.  I was told most people can’t function as well as I was with blood clots.  Had this scan not been scheduled, I think I’d be six feet under today.  I have a vena cava filter inside me and I take Coumadin and have my blood checked regularly. This is my life now – it consists of frequent scans, blood work and doctor appointments.

People have called me amazing in the respects that I have kept pace with my job duties and never really missed a lot of work time.  I would go to work the day after a treatment.  Did I push myself?  Yes, but I did what I felt I had to do for my own well-being.  Sitting at home wallowing in self-pity doesn’t help matters.  You can’t isolate yourself from life.  My boss and coworkers have been very supportive through it all, as well as my family and friends.  I just had a minor setback hearing the news that my cancer is spreading.  I try to appreciate the small things.  I tackle one thing at a time.  I’d be lying if I said I don’t get depressed now and then.  With the love and support of family and friends, you find the strength and motivation to push forward.  The advice I would give to other cancer patients is to find that inner strength, open up to others, don’t be afraid to talk about the cancer, and push yourself to keep your daily routine as normal as possible.  If someone offers help, take it.  Don’t be too proud.  Most of all, keep a sense of humor.  Don’t be overly sensitive to your situation.  I lost about 20 pounds during my first chemo round.  I was in the hall one day at work when a coworker was walking towards me.  “Wow Karen, you are really looking good!” she said, to which I replied “I know…it’s the new chemo diet!”  Her reaction was shock at first, and then we laughed.  Don’t be afraid to joke around about things.  It doesn’t mean you’re being heartless.

I came across Get Your Rear in Gear through Facebook, and I’ve enjoyed reading the stories that have been shared.  A very good friend of mine, who lost her dad to colon cancer, has participated in a 5K run with the organization.  Thanks to this alliance, my cancer is receiving more awareness.  I love the name; it may be a funny title, but that title holds so much meaning.  Give your derriere the attention it deserves and keep it healthy!  For me, I’m trying to keep the good attitude and enjoying life one day at a time.

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