Sunday 30 November 2014

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.

Wednesday 27 August 2014

1 / 10,000

                               " Melanoma. That's not a good one to have."

I think I may have repeated this 3 or 4 times while the doctor, a gastroenterologist, was explaining the diagnosis from a biopsy taken during a colonoscopy he performed two weeks earlier. I'm really not sure what he was saying since, as I mentioned in my first post, he was babbling incoherently. Oh wait...no, that was I whose brain momentarily was shocked into not able to process sound into language

Anorectal melanoma, he said, accounts for only 0.5 to 1 %  of all rectal cancers, and with the little “hemorrhoidal lump” he found, I was only supposed to have a 1% chance of it being cancer in the first place; in total, a 1 in 10,000 chance of this diagnosis.

 I have never in my life bought a lottery ticket; perhaps now I should,  considering my "luck " with beating the odds.
This doctor took time to explain the disease and the course of action he wanted to take as far as scans and referrals to other specialists.  But many of the details of the “cancer” did not sink in at that time.

After I left his office, one of the first things to come to mind was quite humorous.
I thought to myself, “since melanoma is generally a skin cancer associated with over exposure to the sun, it just goes to prove that the sun really does shine out me arse!”
I don't intend to be offensive, just honest. And this is honestly what came to mind.
I have discovered through this ordeal that the use of humour is not a means to deny the seriousness of the situation, but rather it helps me to cope without becoming overwhelmed.

For the first few days after the diagnosis, I could not bring myself to do any research on my type of cancer.  But once I mustered up the courage to look, I found several articles and cancer sites online. The following is a collection of information from different sites including the MD Anderson Cancer Center at the University of Texas, the MacMillan Cancer Support and the Dana Farber Cancer Institute in Boston.

Melanoma is a cancer that develops from cells called melanocytes. These are cells that produce melanin or pigment, which are responsible for the colour of our skin. Melanoma can occur anywhere in the body that produces pigment. Anorectal melanoma is a mucosal melanoma affecting the anus and or rectum. It can occur in several areas including the rectum, the anal canal and the anus.  Ease of diagnosis and treatment depend on location.
There are no obvious risk factors for anorectal melanoma including family history. For this reason and because it is so rare most cases are quite advanced once diagnosed and therefore has a poor prognosis. 

I am very lucky that mine was located at the end of the rectum partially on the anal sphincter allowing for noticeable symptoms fairly early before any metastases had occurred.
(That's enough medical talk for one post. I will write about treatment next time.)

I was advised that urgent surgery was necessary. There were a few nights filled with interrupted sleep between diagnosis and the procedure, but worry and fear did not fill my every thought and action. I was too busy and involved with life to be consumed by darkness. Part of it may have been a little bit of shock and a big part of it was suddenly being thrown into a flurry of tests and scans and appointments. I didn’t have time for too much introspection.
Most of it though, I know for certain, was the grace of God through the Holy Spirit that filled me with that peace that passes all understanding. Did I or do I know that He would heal my cancer? No. But I did and do have a sense of His presence with me and that no matter what my outcome, I will be always surrounded by Grace.

“1/ 10,000” chance reminds me of a beautiful song called 'Ten Thousand Reasons (Bless The Lord)' by Matt Redman. I'm not trying to make any significant spiritual connection between the cancer and the song.... it simply reminded me of the song which talks about worshipping God whose goodness overwhelms the darker moments of life.

I will leave you today with an audio recording of my 2 yr 9mo old grandson singing the chorus and first verse. He forgets the words to the 3rd line of the verse but adds the drum beat with a firm BOOM BOOM.  Listening to him sing is one of the joys I’ve experienced this summer.  A moment of grace thru the dark.

                         "10,000 Reasons (Bless The Lord)"
                                                                      by Matt Redman and Jonas Myrin

     Bless the Lord, O my soul
     O my soul, Worship His holy name
     Sing like never before, o My soul.
     I'll worship Your holy name

vs1. The sun comes up, its a new day dawning.
       Its time to sing your song again.
       Whatever may pass and whatever lies before me
       Let me be singing when the evening comes.

vs2 You're rich in love and you're slow to anger
      Your name is grew, and Your heart is kind.
      For all Your goodness I will keep on singing.
      The thousand reasons for my heart to find.

vs3. And on that day when my strength is failing
       The end draws near and my time has come,
       Still my soul will sing Your praise unending.
       Ten thousand years and then forevermore.


Monday 11 August 2014

Now Is As Good A Time As Any

" I have to tell you, you have a very rare type of rectal melanoma."

At least, this is how I remember the doctor delivering the diagnosis. What followed was 30 seconds or so of "blah, blah, blah, blah, blah……." and as he started making sense again, I began to get the gist of what he was telling me.

That appointment was on Friday, March 28, 2014. After that came a whirlwind of tests, scans and appointments with specialists to determine whether or not the cancer had spread to other regions, all leading up to surgery on April 17, 2014.

I considered writing a blog about this journey since that Friday in March, but procrastination, one of my finer tuned skills, kept me from getting started. And then, I received my inspiration while reading the blog of my friend Cindy Verheul, who was herself recently inspired after another blog by Houzz with these three words, "why not now?"

Indeed, why NOT now?
Now is as good a time as any.

Definitely there have been moments of fear and uncertainty over the last few months, but honestly, it wasn't all bad. Through it all I've been blessed with a conscientious and skilled medical team, the kindness of wonderful friends, strengthening of family relationships, the support of my fantastic church family, and the deepening of my faith in God (Father, Son and Holy Spirit).

I decided that I would face this interruption of my relatively smooth sailing life with determination and perseverance knowing I had the support and love from everyone listed in the previous paragraph. I've found the following scripture verse offers strength, purpose and encouragement in dealing head on with all that's come my way this season.

    "And let us run with perseverance, the race marked out for us,
     Fixing our eyes on Jesus, the pioneer and perfecter of our faith."
                                                                             ~ Hebrews 12: 1b-2a NIV

I'll be writing about my personal experience and you are welcome to follow along. I do not fancy myself a writer. I am neither theologian nor medical expert. But, I AM an expert on my own journey. After all, I've been witness to it for the entire ride.