my cancer journey part 2...by sally c.

Before I started chemo, I had to have a port put in. This happened the same week I was having my stent from my gallbladder issue removed. We were still in the middle of covid, so rules were different. Though in the same hospital, my husband was allowed to stay in the waiting room for one of the procedures but had to leave the hospital for the other. Clearly, they were still working things out. 

Now I moved to the care of my surgeon and chemo oncologist. I would have 3 rounds (about every two weeks) of chemo, then I would have a few weeks break before my surgery scheduled for the first week of February. Then when I could, I would resume 5 rounds of chemo. Each chemo I would first have a blood test, then wait a few hours (usually at Whole Foods) to meet with my oncologist for results, then onto infusion chemo. Gratefully my counts were always in range so I could have chemo that day. My husband went with me to my first chemo to get the lay of the land but after that he’d run errands then come pick me up (he would stay with me for my blood work, coffee break and time with my oncologist). It was a long day usually with chemo infusion lasting about 4 hours. Normally I rested or watched a movie on my iPad. They provided lunch. A side effect of chemo was neuropathy which for me mainly was in my fingers/hands. It would hit the minute chemo was done lasting a week or so. It meant that I couldn’t touch anything cold, so gloves were a must outside in the cold, or getting things out of the fridge/freezer, etc. Also, it would feel as though I was swallowing glass shards when I drank something cold which I tried not to do. For 2 days I would bring the chemo home in a bag, then return for them to remove it. 

Prior to my surgery in February, I had to get measured and marked for a colostomy bag (permanent) or ileostomy bag (temporary) . I would have one or the other for sure when waking up, depending on how surgery went. It was an awkward thing to think about having a bag for my body waste and an opening in my side. On February 7 I had my surgery where the surgeon removed most of my rectum and my sigmoid colon, thus removing the cancerous tumor. I work up to a temporary ileostomy bag. It took a lot of training and trial and error to figure out the bag. Changing it, showering with it, wearing clothes, sleeping with it and traveling with it. Big adjustment. There were a few tears as I learned to adjust to this thing on my body that I wasn’t really in control of. And the times it malfunctioned (operator error) were difficult. I resumed chemo 3 weeks post-surgery and in between chemo we would head to the desert (from Seattle), then return home for chemo. 

My husband told me that near the end of my chemo treatments I told him I wasn’t sure I could complete them. I know I was very tired during my treatments, but now I’m not sure what I was experiencing during these times. I had many appointments with regular blood tests, CT scans, meeting with my oncologist, etc. My insurance also provided a dietician to help me with my nutritional needs especially during chemo and a therapist that I would zoom with every few weeks. Upon completion of my final chemotherapy, I was able to schedule my reconstruction surgery for June 20th, a little over 4 months from my cancer surgery. Surgery went well, though the adjustment to my new plumbing system is ongoing today. I have what is called LARS, lower anterior resection syndrome …. I can’t or shouldn’t eat all the foods I used to …. Oddly enough I was so optimistic post-surgery I went to meet my friend for her birthday lunch 4 days post-surgery. Not very smart as I paid the price (I won’t go into detail).  Also, that morning (4 days post-surgery) I noticed one leg had swollen. I went to the doctor, and they did a blood test and said they’d call if there were any issues. By the end of the day, I called just to make sure all was well. They said there wasn’t any issue. Well, I had barely hung up with them when they called back to say I did have a blood clot and to get to the ER immediately. 4 hours later I was home from the ER with shots/medicine for a blood clot. Oddly enough the clot was in the other leg. So now I was taking care of a blood clot and dealing with my new plumbing system. As I mentioned above, Post-surgery I was left with Low Anterior Resection Syndrome, a collection of symptoms colorectal cancer patients can face after surgery. It’s defined as disordered bowel function after surgical resection of the rectum, often leading to a detriment in quality of life. Symptoms range from fecal incontinence and urgency to constipation and emptying difficulties. Though I was done with radiation, cancer surgery and chemo I was now living and continue to this day to live in a post cancer world with the long-term ramifications of it.  I was on a 3-month blood test/CT scan regimen and am now on a 6-month plan. Towards the end of year 2022, when my oncologist felt the timing was right, I had my port removed. Also, at the end of that year I had surgery to remove my remaining ½ thyroid. Thankfully the biopsy came back a benign growth so no cancer there. 

During my time with surgeries, chemo etc. I felt I had all the support I need with family and friends. I have a strong faith in God that also helped get me thru. Though there were support groups associated with Swedish Hospital, at that time the thought of heading back downtown to another meeting/appointment was out of the question. One day shopping down at the Gardens of El Paseo I saw the Shay’s Warriors mural. Immediately I looked up with it was all about. I felt the timing was right to connect with people who shared a similar experience of cancer. Though-out of treatment, we still live in cancer world daily. I can’t remember right now but I think my first event might have been yoga. Then I think I was headed home for the season to Seattle, so I zoomed into the Coffee and Connections. I was able to do that a few times, and then another yoga session when back in the desert. I was grateful to be chosen to attend the 2023 retreat at the La Quinta Resort, meeting wonderful women who are survivors (and thrivers) of cancer. It was a wonderful few days to relax, be treated to wonderful meals, experience caring guided sessions, and have

many opportunities to connect with other women who have experienced cancer. Many of those connections continued as I returned to Seattle for the summer. Thru Coffee and Connections, I was able to stay connected to SW. Upon returning to the desert, I’ve had the chance to meet over breakfast with some of the retreat attendees and then an in-person Coffee and Connections. I’m looking forward to more activities as I’m in the desert for the season including the Concert at the Gardens, Tour de Palm Springs walk, yoga, Coffee and Connections and hopefully more events, before I head home in April. And then I know I can continue to stay connected via zoom with Coffee and Connections and Talk, Listen, Share. What a blessing and gift for me to have found such a caring, supportive cancer support group. I’m so thankful for Shay’s Warriors.