Colorectal Cancer Awareness Month

Last month was National Colorectal Cancer Awareness Month.  I had every intention of writing an update about my colon cancer journey.  As often happens since my diagnosis, I was either too tired, too itchy or simply unable to concentrate long enough to sit down and write a new post. 

With the one year anniversary of my surgery later in the week, I thought it would be a good time to share a bit more about my colon cancer journey.  

A Little Background about My Situation

April 5th, 2014 and the days following it, hold events that are ingrained in my memory.  After experience symptoms of what we thought was GERD for several months, the pain in my abdomen increased to the point where I could barely get out of bed.  I finally drug myself back to the Nurse Practitioner that had originally diagnosed GERD.  He sent me for a CT scan where a blockage was discovered.  I was given the choice of going to the ER late Thursday afternoon (April 4) or waiting till morning and going in then. 

Of course, I chose the option of waiting till the next day.  I was sure I could fix everything by simply doing a colonoscopy prep. Hah, joke was on me.  I couldn’t even get 1/4 cup of the prep down before it came right back up.  

I don’t even know what I was thinking when Dave took me into the ER that Friday. 

But

wasn’t even on my mind.  After all, I had had all my regular colon screenings. Much to my surprise, the ER staff told me I had colon cancer that afternoon.  I still remember arguing with them.  I didn’t win that argument. 

To read more about the first three months of my colon cancer journey, please visit Rooted & Established in Love

August 2014 to April 8, 2015

As I look back over the previous year, I can’t believe how far I have come.  Everyone’s cancer journey is different and very personal to them.  I have had some setbacks and disappointments.  In early August, there was an incident during one of my doctor visits that made me realize that I was going to need help dealing with my emotions.  I began seeing a therapist virtually about every 3 weeks.  The visits have helped quite a bit. 

In early September, I had a reaction to the bone strengthening medicine that the doctor wanted me to take. In trying to treat the pain involved with this reaction, I ended up with an allergic reaction to the pain killer I took.  I was a hot mess for several days.  I usually have a really high pain tolerance but the intense pain in my hands was something else.  For several days, I could barely use my hands.  I couldn’t open the doors, I couldn’t snap the leash onto Gracie’s harness, I could barely pull my clothes on.  On top of the pain in my hands, the pain killer allergy gave me an itchy, red rash all over my face, neck and torso.  Taking a round of steroids and over the counter pain killer finally  resolved most of the issues. I still have some swelling around my knuckles.  It is almost like the bone strengthening shot pushed me into developing arthritis. 

October brought hurricanes to Southwest Florida.  The cancer center that I normally visit was damaged and all of the patients were reassigned to a different facility about 25 miles away.  I had several treatments and a PET scan while being a patient of this facility.  I also had two different nurse evaluations for issues I was experiencing. 

One of the issues ended up requiring a visit to the surgeon who did my original colon surgery.  I was excited to see her. It had been six months since my surgery so in my mind, it was time to reverse my ostomy.  I had everything all planned out,  I just needed to get on her surgical schedule.  After all, she told me during my hospital stay that the ostomy could be reversed after three to six months.  Thinking that I only had to deal with the ostomy for up to six months and then everything could be put back in place was one of the things that got me thru the first 6 months of recovery.  

After the surgeon dealt with the new issue that required her expertise, I brought up the fact that I wanted to get the reversal done before the end of the year.  The cancer doctor said he would go along with it based on the results of my late October scan.  In all honesty, he really wasn’t keen on the idea of my having the reversal for several reasons but I think he just wanted me to stop bugging him about it.  The surgeon said she would review my file and we would talk about it during my follow up appointment in early November. I was so excited…. I felt like there was light at the end of the long tunnel.

I had a PET scan in late October and received the results at my November 4th appointment.  That is when the cancer doctor said he wouldn’t stand in my way if I insisted on the reversal but he really didn’t think it was a good idea.  He was concerned that there still might be microscopic cancer cells in my colon and that the surgeon wouldn’t be able to reattach the two ends of the colon. I was like…. yeah, yeah, yeah…. I am sure she can. Everything will be fine, blah blah blah….  

The follow up appointment for the surgeon was the same day as my appointment with the cancer doctor.  I did the happy dance all the way into her office because I knew, just knew, that I was almost at the end of having to deal with the colostomy. 

After she examines the area that she was treating, I start in on my “when can we do the reversal?”  She was totally unprepared for this discussion and basically said she wasn’t sure she could reverse it.  I sat there in complete shock…. “what do you mean you can’t reverse it?”. “You told me while I was in the hospital that it could be reversed…. now you don’t know?”  She did say she could do the surgery “open” and as an exploratory surgery.  I may or may not wake up with the ostomy reversed.  I was devasted.  Surgery of any kind has risks and I certainly didn’t want to open myself up to risk of infection, complications, etc for a surgery that may or may not result in a reversal. 

I also complained about the location of my ostomy.  The photo above shows a woman holding a colon cancer awareness ribbon right about where my ostomy is.  Its position affects the type of clothing I wear.  I was carrying on about the position making me look lopsided because the type of ostomy I have protrudes.  Her answer was to wear higher pants in order to have my pants come up over the ostomy instead of riding just below it.  I am short waisted so in order to do that, it seems like my pants are up under my armpits…. 

She did refer me to a wound specialist to see if there was anything they could do to help me deal with the skin issues related to the ostomy.  The nurse at the wound care facility was able to help me.  She gave me some great tips. 

The visit with the surgeon left me discouraged and broken hearted.  I was very despondent and even told Dave at one point that I didn’t want to go on living like this.  I spent the month of November and part of December being very angry at the surgeon.  At some point, I finally came to the realization that I could in fact continue to live with the ostomy and that I wasn’t ready to give up.

  

In late January of this year, I had another PET scan.  The scan showed no evidence of disease progression.  A few areas have continued to shrink.  There is still something in my lungs.  I say it is residual scarring from the pneumonia, the cancer doctor says it is cancer but that I am asymptomatic.  Since I don’t have any symptoms such as shortness of breath, we aren’t going to do any further testing on the lungs at this point.  I am sure my doctor just loves it when I disagree with him.   

The Keytruda immunotherapy that I am on appears to be working.  The main side effect I have from it is increased fatigue and itching.  I have been itchy since I had my hysterectomy.  The itching is worse now but in addition to being a side effect from the Keytruda, it could be that my allergies in general are worse.  I treat the itchiness with a “cocktail” of Claritin D, benadryl, Pepsid and hydroxyzine.  I also use a special lotion. 

Two of my best friends came to visit around Valentine’s Day in February.  It was so great to have them with me for a few days.  I was very sad when they left.  While they were here, I did more walking than I had in quite some time.  I also may have drank more wine.  I ended up with very swollen legs and had to have an ultrasound to make sure I didn’t have a blood clot. Fortunately, I did not. I did however have varicose veins in both thighs and a condition called lymphedema. 

Both these conditions can make one’s legs swell and be painful.  I had my first varicose vein procedure last Wednesday and I am scheduled for my 2nd one tomorrow.   In all honesty, I should have had these veins dealt with a few years ago.  I have had pain in my thighs for years that is probably from the varicose veins.  

The lymphedema in my legs will hopefully be helped by visits to the lymphedema therapist.  I had an evaluation last week and started therapy last Thursday. These pumps on my legs are the bomb! They gradually compress your legs to help with the circulation.  If you have ever worn the leg things that help guard against blood clots in the hospital, these are similar.  They are actually much more comfortable than the blood clot preventing one.  I only wore them for about 30 minutes last week but my legs felt better when we were done.  The therapist also did lymphatic drainage on my legs.  It will take several sessions before I see dramatic results but I have high hopes of having pain free legs in the next few months.  

As you can probably see in the picture of me with my friends, yes, I have gained back all of the weight that I lost.  I started whining about it to the cancer doctor and to his nurse practitioner last November.  The cancer doctor said it was a good thing and he wasn’t concerned about it. Unfortunately, he forgot to pass that on to my nurse practitioner (you know the one that thought I had GERD).  My nurse practitioner told me I was obese at a recent visit.  Actually, I am overweight according to the chart…. I haven’t reached the obese level yet. 

In order to avoid reaching the obese level, the nurse navigator at the cancer center told me about the nutritionist they have on staff.  I met with her virtually in early March.  She gave me some great tips.  So hopefully with paying more attention to what I am eating and increasing my activity level as well as having my leg issues resolved, I will loose at least 20 pounds over the next several months. 

Yesterday, I was able to work outside for several hours refreshing my color pots.  There was very little humidity.  After I finished my potting task, I actually got into our swimming pool for the first time in over a year.  The lymphedema therapist said water activities are very good for the legs. 

So far, I have managed to stay out of the hospital since mid April of last year.  There were a couple of times over these last months were I thought I should go to the ER.  Being able to be evaluated by one of the nurses at the cancer center has been really helpful.  

I am very grateful to my cancer doctor, the staff at Florida Cancer Center and Research Institute in Port Charlotte, FL and the lymphedema therapists.  I am also grateful for the support I have received from my husband, family and friends.  I know I haven’t been the easiest to deal with.  It has certainly been an emotional roller coaster.