Happy Anniversary To Me

                 

                    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 2^nd 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)

Run For Cover! This Girl's About To Erupt!

                " What if trials of this life are Your mercies in disguise?"

My surgery back in April; the abdominal perineal resection, was a success. My anus and rectum we're removed and I now had a permanent colostomy. I did feel miserable for a few days as I mentioned in my last post, but this was due to the epidural, not the surgery itself, from which there were no complications.

The pathology from the surgery revealed a slight spread of the melanoma to 2 of the 14 removed lymph nodes. The original tumour was also ulcerated, all indicating that I had a 50 to 70% chance the cancer would return within 5 years.

I was discharged from hospital nine days after surgery. I was both ecstatic and terrified at the thought of leaving this safe and secure environment. Ecstatic because, well who wants be in hospital in the first place, and terrified because I had this new thing attached to me. Well no, not attached. It was sticking its head out of my belly like some kind of alien trying to break free from its human host. And I thought I would have a big challenge learning to cope with this. . . That I would have to alter my lifestyle . . . That I would be preoccupied with the care and concern of the ostomy.

I am happy to report that this was not the case. It has not been too difficult learning to cope. Certainly, it took a couple months try different products to find what worked and suited best and to settle into a routine that I was happy with but since all that was worked out it has not been a hardship.
My lifestyle has not changed and I'm far too busy to be preoccupied with any of this.

At the beginning of discussions on treatment, I thought I was headed for months of chemotherapy followed by radiation. This had been the standard treatment in the past but I did not relish the thought of going though this rather toxic experience.

After a fair bit of research and consultation with colleagues from bigger centres who specialize in mucosal melanoma, my oncologist advised a different, and in my opinion, a far better plan of action. My husband and I also travelled to The Dana Farber Cancer Centre in Boston for consultation, and we were given the same new advice there.

I won't get into all the technical medical information on gene mutation and so on, since that is not the purpose of this blog, but sufficient to say, our conclusion for treatment was to do regular CT scans every 6 months, and wait. Should anything suspicious show up I would have surgery to remove it as long as it was resectable. If anything showed up that was not resectable or too numerous then we would try a course of immunotherapy agents. I'm told these new drugs are showing promise in treating this beast.

Right then. Back home. So good to be home. When I was first diagnosed I felt a bit stunned. This was followed by a couple of weeks of flurried activity leading up to surgery. While in hospital I experienced great sadness and great joy, as I wrote about in my Nov. 30 post.

Now at home, ANGER erupted like a ferocious volcano that spewed its muck and mire over everything and everyone in its path.  The two other people in the house, family members, were having a disagreement. . . not even an argument . . . just not agreeing on something. Even though I was in another room, their conversation triggered something within me and I let it all out. I screamed at them to Shut up! Shut up! Shut up! Then I just started screaming at the air. Screaming about the colostomy. Screaming about having cancer. Screaming about feeling miserable. Screaming about being afraid. Screaming at no one, yet everyone felt the brunt of of my screaming.  The air was a very heavy, thick blue as I let fly assorted adjectives and expletives unbefitting a lady . . . Well unbefitting anyone, really. It would have made even the saltiest old sailor blush. (OK, that last sentence was perhaps a slight exaggeration). Oh yes, I was angry.  

Eventually, both family members left for awhile on errands. Even the dogs ran for cover. After a bit I think I cried myself to sleep and that was the end of my anger.

Period.

Since then I've had moments of sadness and fear, many more moments of joy and happiness and contentment. But the anger was done.

In my last post, I wrote about how listening to Bach's Mass in B Minor was a great source of comfort while in hospital. There was another song on my playlist that also brought peace and aided in the process of healing: "Blessings" by Laura Story. 
Click on this link to listen to this beautiful song.

Blessings by Laura Story

This song talks about how we pray for peace, healing protection for loved ones. These are all wonderful things to pray for, but sometimes we go through difficulties in life anyway, despite our prayers. And sometimes, it is in enduring these hardships that we find deeper healing. We learn about ourselves as we grow and become stronger. Somehow, through God's grace, we come out on the other side with more wholeness, freedom and sense of God's interest and involvement in our life.

By mid June, I was feeling quite well and very grateful and pleased that I did not have to endure chemotherapy treatments at this time. God's grace had carried me through this first round of the darkness of cancer and I was filled with a joie de vivre that allowed me to enjoy a marvelous summer.  In June I auditioned for and won the role of Mother Abbess in the Sound Of Music, to be performed by my city's theatre company in November. In early July, our son, his wife and our 2 grandsons visited at our cottage. My husband and I celebrated our 30th wedding anniversary in August. We travelled to Calgary to visit our daughter and her boyfriend. We visited my mother, my 2 brothers and their wives. It was the first time since my dad died in 2006 that all three of our spouses and us were at Mom's at the same time.

I enjoyed every minute of the summer, feeling more appreciative of all that I have in my family, friends and church family than ever before.

Through this experience God has been faithful. God's grace is abundant.

Yea, though I walked through the shadowy valley, fear did not overwhelm me because He was and is with me. (sort of Psalm 23:4)

I'll close today with the lyrics from our closing song at church this week.

Still

Words and music by Reuben Morgan:

Hide me now under your wings?

Cover me within Your mighty hand.

When the oceans rise and thunders roar,

I will rise with You above the storm.

Father, You are King over the flood.

I will be still and know that You are God.

Find rest, my soul in Christ alone.

Know His power in quietness and trust.

March and April 2014 was a time of turmoil and uncertainty while we dealt with my cancer. It really was like being tossed and thrown about in a storm with rising flood waters. But the peace and presence of God the Father, Son and Holy Spirit got me through it. We've weathered another stormy month since then and are about to enter another rough patch, but I'm ready and confident that regardless what happens I will continue through darkness surrounded by Grace.

God can help us breathe underwater. . .

Amen.

Is There Really Joy In The Midst of This?

"Into the darkness You shine"

It has been three months and two days since my last blog post. I'd like to say I have a really good reason for taking so long to post, but in reality, like I said in my first post, procrastination is one of my finer tuned skills.  It’s a long post, so you might as well grab a cup of something or glass of something and sit back and enjoy.

We are still back in April of 2014, finishing up tests and scans and getting ready for surgery. Through all these steps I felt a range of emotions: I felt anxious, frightened, bewildered and yet determined to face whatever was set before me. In reality, the anticipation of every step was far worse than the actual appointment or test proved to be. This was true of everything from the initial colonoscopy  to the surgery to all of the subsequent follow-ups. My husband, who works as a physician, accompanied me to most of my appointments. I can't stress enough how crucial it is to have one's spouse, partner or good friend come along for support. So much information is relayed that it is easy to miss or misinterpret the explanations given by the surgeon or oncologist, etc.

      Our first meeting with the surgeon occurred on April 8 of this year. Once she had reviewed my case and reviewed potential treatments, she explained the type of surgery I needed and why my option was the best option…. Well, only option, really. Are you ready for this? Hearing it made me feel nauseated and breathless all at once. And yet, as bad as it seemed, it was also a blessing, Here's why.

The bad news was, the tumour was situated at the end of the rectum partially on the sphincter.

When excising my type of tumor it is preferred to clear a margin of 2 cm from surrounding tissue in hopes of removing all cancerous tissue. There was no way to do this in my case without sacrificing the sphincter muscle because of the tumor location. The procedure she was to perform would be an abdominal-perineal resection. I would be left with a permanent colostomy.

The good news was, the tumour was situated at the end of the rectum partially on the sphincter.

Because of the location of the tumour, it would get irritated every time I had a bowel movement, which would cause a little streaking of blood on the tissue.  As the volume and frequency increased I was prompted to check it out. Had the tumour been located elsewhere in the rectum, I may not have experienced any symptoms until the disease had advanced to the point of no return.

The thought of having a colostomy was appalling and a shock. I wanted to appear collected and intelligent, and say to my surgeon something like, "will this procedure leave me with a permanent colostomy?" Instead, I blurted out, one word: "FOREVER?" My dear compassionate surgeon (yes they do exist) respectfully and tenderly nodded. "Forever."

For a little while I was flooded with a mix of emotions; panic, fear, disbelief, and that breathless feeling after being kicked in the stomach. (I've never actually been kicked in the stomach, but I imagine it feels much like I felt). I did not feel angry however, at least at this point. That would come later!!

What is a colostomy? According to the online Oxford Dictionary a colostomy is "a surgical operation in which the colon is shortened to remove a damaged part and the cut end diverted to an opening in the abdominal wall."  

Someone actually came up with this idea? Really, who thought of that? After some online research into the history of the colostomy, I learned that in battles as far back as Biblical times, (see Judges 3:20-23) swords would often penetrate the abdomen puncturing the bowel and a natural “ostomy” would develop! So it stands to reason the idea had crossed someone's mind after all. I had assumed the colostomy was a fairly new discovery in medical history, say within the early to middle of the last century. I was wrong.

The following information is a paraphrase of an essay titled, "The Origins Of Ostomy Surgery," written by Kerlyn Carcille RN BSc (Nsg) ST, Silver Chain Nursing Association, Perth, Western Australia.

  The first planned colostomy was performed in 1776 by a French surgeon and was seen as a last resort when other non-surgical procedures such as purgatives, dilation and the consumption of 2 pounds of mercury had failed to clear a malignant bowel obstruction. The patient dies two weeks after surgery. Autopsy revealed that the death was not caused by surgery complications, but to a gangrenous small bowel from which was retrieved two pounds of mercury. the first recorded successful colostomy was performed on an infant in 1793. This patient lived for 45 years.

Several attempts over the next few decades to perfect and study this procedure met with various complications and outcomes. Some stories were quite tragic; surgical methods and treatments were used that would make us shudder today.

A 1999 article suggests a slightly differing timeline for the first colostomy but the information is otherwise similar.  This second article is more thorough and includes recent history. You can find it by searching for the journal, "Diseases of The Colon And Rectum" 1999, volume 42, pages 137-142. Peter A. Cantaldo, M.D. from the Medical Centre hospital, Burlington Vermont, wrote the article.

My surgery was held on April 17, 2014, the day before Good Friday. I felt quite poorly on Friday and Saturday. But I had imagined and prayed that I would miraculously awake on Easter morning free from the pain and the fogginess in my head, as a symbol of new life in the resurrection of our Lord on Easter morning.

Wait for it…. Can you hear the crickets chirping?…. Nope, it didn't happen. I still felt miserable on Easter Day.

On Monday, I started feeling like myself again. It was a better day.

Then night fell. It was the first time since my diagnosis that I had time to be alone and really process all the emotions I was feeling about what was happening to me. In the dark and quiet of my hospital room, I suddenly felt very alone and very, very sad.  I wept. I grieved. My heart ached. I had cancer. I had a potentially very aggressive cancer. I felt consumed with fear and such heaviness.

I am glad that no one was with me that night. No one was there to say, "don't worry, it'll be all right," or " there, there don't cry." We, in our society, tend to be very uncomfortable when others around us shed tears or suffer sadness and grief. We don't know what to do with it. But not only is it OK, I believe it is a necessary part of our healing. Crying brings a cleansing. It washes away the gunk, the pain, the garbage we carry with us. And so often it is in the midst of our pain that God meets us in a very real way.

In church this morning (November 30) we sang the song, "Our God" by Chris Tomlin.

Here are some of the lyrics: 

Into the darkness you shine. (He meets us in the time of our great need, in the midst of our brokenness and suffering)

Out of the ashes we rise. (He brings healing to our bodies and souls. He restores our hope. He redeems our lives)

And if our God is for us, then what can stand against? Because of what God has done for us, we know that neither trials nor difficulties will interfere with God's purpose for us.

As I wept, I became aware of God's holy presence with me and eventually I fell asleep. I didn't sleep well, but I did sleep.

Tuesday was a better day again and the night was not so lonely because my daughter had downloaded some wonderful music onto my iPad for me, ranging from Pharnell Williams' "Happy" to the very best work of music ever composed, J. S. Bach's "Mass In B Minor." 

It was very late at night, still in hospital, while listening to this great work, that I was overcome with a very real sense of pure joy. Not the light fluffy happy, happy, happy joy, but the deep joy that brings peace, contentment, confidence in God's direction and renewed purpose. I have never been more aware of God's presence with me than I was that night.

I think that because I was able to grieve and cry the night before, God met me there and poured out His healing and His grace allowing me to be lifted out of the darkness. I am well aware that healing does not necessarily mean a cure from the disease, cancer… but I sure would like it to be so!!

I slept very well that night and I gained energy and a renewed conviction to continue with strength and encouragement from Hebrews 12: 1b-2a… running with perseverance the race set before me.