An Exercise In Living by Faith And Not Living In Fear
Today, April 17, 2015, marks the first anniversary of my surgery. It hardly seems possible that a year has gone by so quickly and yet in these last 12 months I've endured some of the longest days and nights and weeks of my entire life.
I am reflecting back over what I've written about my experience with diagnosis, scans, tests, surgery and emotions including shock, fear, sadness, anger and joy, not all in that order and many of these more than once. All of what I’ve written about up to this point had occurred over a 4 week period.
Once home from the hospital, I had to pick myself up, dust myself off and get on with living with my new reality: the colostomy. The permanent colostomy. Previously I knew what a colostomy was although I didn't know much about it and was fairly uneducated in the differences between colostomies, ileostomies, etc. At first, I was frankly disgusted with the thought of having one. And yet, when faced with having to make the decision between having a colostomy, or having to endure a painful and miserable few months with a growing tumor that if left unattended would end my life, opting to have the surgery was a no brainer.
I became accustomed to the care and maintenance of the colostomy fairly quickly but there were moments of frustration when having to deal with bathroom situations at inopportune times. Five months after surgery, I started using a bowel irrigation technique once every 48 hours. This has given me control over when my body discharges waste. What an odd thought it would have been 6 months earlier to think I would be excited over flushing my bowel with water every 48 hours, but now it seemed like I had a new lease on life! I felt quite proud of myself for finding this new freedom!
I learned that there are many people who have ostomies. According to one website, there are approximately 70 000 new ostomies each year in North America.
Ostomates range in age from the very young to the very elderly. Most of us feel a great sense of relief that surgery has given us a new lease on life. This is especially true for those who have suffered for a long time with diseases like Cohn's and colitis.
I have found the Ostomy Canada Society to provide a wealth of information and support. Look for them at www.ostomycanada.ca. I have also discovered melanoma support groups on Facebook that offer a tremendous amount of information and personal support. We share our stories of struggle, pain, perseverance and hope.
My surgery successfully removed the tumor. With no complications from the surgery and a good 8-10 weeks’ recovery, I started to feel like myself again. I was regaining energy. I even got back my breath strength and abdominal muscle support and was singing once again. One of my joys of the summer was successfully auditioning for the role of Mother Abbess in our city's theatre company's fall production of The Sound Of Music.
I was scheduled for my six month CT scan in mid October. There was a 50-70% chance that my mucosal melanoma would return so I experienced what I've come to know as "scanxiety" as the day of the scan approached. But really, I didn't think it would rear its ugly head this soon after surgery, so after 2 weeks not hearing any results, I felt relieved and confident I was free and clear.
That relief was short lived. I received a call to come see my oncologist the next day.
Ugh. That feeling of being kicked in the stomach returned. The beast was back, and after only 5 months. It is an aggressive beast. This time in the upper section near the edge in my right lung. Fortunately, it was very tiny, only 6mm in size; but I needed another surgery.
After my oncologist gave me this news and answered my questions, she asked me a question of her own: " When does The Sound Of Music go on stage?"
We were in fact only two weeks away from opening night and would be performing six shows in five days. I wanted to wait until the show was over before having surgery and she agreed.
Other than our children, my husband and I did not tell anyone until after the show! I certainly didn't let on to anyone involved with the musical especially the director or the musical director! Rehearsals were great and the show was promising to be fabulous. I did not want to draw attention away from all of that to me and my cancer!!
Doesn't that sound admirable, that I would soldier on through adversity for the sake of the show? Part of me really did care about the other actors and the show BUT this was not an entirely selfless act. Another part of me, the paranoid part, was afraid the director might want to replace me for fear that I may not be well enough physically or emotionally to continue. In hindsight, I see what a ridiculous notion that was! We had built friendships and mutual respect for one another over the 2 months of rehearsal and we all had each other's best interests at heart.
If anything, the news of my new tumor had not distracted me but instead had made me more determined than ever to deliver my best performance.
What if this was to be my last role? A tad melodramatic, perhaps, but hey, that comes with the territory. We should approach every performance as though it was our last, don’t you think?
Within a few days after the show, I met with the surgeon and had a PET scan, which confirmed only this one tumor and on Dec. 1, 2014, I went for my 2nd surgery in 8 months. This was a wedge resection performed laparoscopically, and was a much shorter and easier surgery than the one in April. I was discharged from hospital after 2 days and was out dancing on Dec. 18 at my husband's departmental Christmas party J.
Now that my six-month scan revealed new tumor growth, my oncologist decided the frequency of the scans should be moved up to every 3 months. As it turns out, this was a very wise decision. My February CT scan revealed four new tumors in my lungs. A PET scan revealed one more tumor in my left flank in soft tissue. Melanoma is an ugly and very aggressive beast. Here it is popping up in me yet again, and so soon!
Well, we have now arrived at the point where the tumors were too numerous for surgery. I have Stage 4 mucosal melanoma. Stage 4. Stage 4. I was stunned. I felt breathless. I felt helpless. Shit. Stage 4.
Stage 4 disease is not the automatic death sentence it was a few years ago however. With the treatments available today, I have about a 20% chance of 5 year survival.
Breathless. Stunned. But NOT helpless.
I'm told that interferon (chemotherapy) has only a 10% chance improving short term disease free period by about 11 months but perhaps doesn’t influence 5 year survival. Thankfully there are new drugs available that have been showing a little more success, hence the 20% chance of 5 year survival. These are targeted or immunotherapy drugs which are designed to inhibit or reverse tumour growth.
I am now 1 1/2 months into treatment. I am taking a generic form of the drug Gleevec, a drug originally developed for the treatment of some leukemias and some stomach cancers. It has also been tested on mucosal melanomas with a particular type of gene mutation and is made in pill form so I can take it daily at home. Side effects have been minimal, for which I am most grateful. My next CT scan will be in late May/ early June, and I will not know until then whether or not this drug is working.
This is a real exercise in living by faith!! Obviously there’s lots to worry about . . . but worrying is such a waste of time and energy. Worry on its own serves no useful purpose and serves only to distract us from living fully in the moment. I may have a short time left here, but I rather hope I've got YEARS left, since that is still a possibility too!!! I feel well! Very well. The drugs make me tire easily, but I still feel well and life is good!
Somehow, I am finding out that God makes His presence known. There is always His grace, His abundant grace. Evident in the peace that quiets my anxious mind. Evident in the strength given to me (that certainly isn't my own, I know me!) Evident in the support from family, friends and church family. Evident in His promises that we read in His word:
1 Peter. 5:10 - "and you who have suffered a little while, the God of all grace, who has called you to His eternal glory, will himself restore, establish and strengthen you."(Revised Standard Version)