melanoma patient story

Story has been provided by Kristin de Montbrun


 

I was 15 weeks pregnant, filled with all the normal hopes and worries that all pregnant women face.  Little did I know my baby and I were about to begin a fight for my life.

My name is Kristin and I am 33 years old.  I live in Bowmanville, Ontario.  I am married with two children, Kara is three years old and Ryan is 11 months old.  In the spring of 2016, I noticed a new spot on my right bicep.  I had mentioned it to my family physician but he didn’t think it was anything to be concerned about.  After a bit of struggling to conceive and miscarrying, I found out in June 2016 that I was pregnant with Ryan.  I started to notice the spot on my arm started changing more and more.  In July 2016, I mentioned it to my family doctor again but he assumed it was pigment changes from pregnancy, which does often happen.

While this was all happening my dad had a spot on his left bicep that was concerning.  My mom and I had both expressed concerns about it and he was going to see his doctor to have it looked at and it was removed.  At the beginning of August, it came back and as melanoma that was caught very early and he needed to go back to have the margins cleared.  With the news of my dad I was growing more concerned and basically obsessed with my arm.

I work in a medical clinic and I was speaking with a co-worker wondering if the Urgent Care clinic in our building would cut this spot off for me so that I could stop worrying.  My friend, who is a family physician and co-worker, overheard our conversation and came out to see what was going on and offered to remove it for me.  A week later, I was in her office getting it removed and I thought it was the end of my worries.  She didn’t think it looked like anything either but with my concerns and my dad’s news it was best to have it removed.

On August 26th, 2016, I was getting ready to finish work and she called me into her office.  I sat down and she closed the door and told me “You were right, it is melanoma”.   In that moment I felt relief that I was not crazy for obsessing, relief that someone heard me and helped me when I knew something wasn’t right.…. And then the fear starting to sink in when she said “I know this is scary because you are pregnant…” Oh no.. I’m 15 weeks pregnant… for a few moments I had forgotten that part and then it was all I could think about.  I felt afraid for myself and the baby I am supposed to be keeping safe inside me.  Of course, this all happened on a Friday afternoon so I had a whole weekend to google too much and scare myself more than I already was.

On August 30th, 2016, I was seen by the plastic surgeon.  She informed me that due to the depth of the melanoma and how aggressive it was that she and the pathologist were recommending a wide excision and sentinel node biopsy to check for spreading.  Because of the pregnancy, she said we had to move quickly as the hormones of pregnancy tend to make melanoma spread faster so I was scheduled for surgery.

September 12th, 2016 we drove to the hospital in the darkness of the morning.  It was so early the hospital was not even awake yet and it was somewhat eerie.  Up to this point, we knew I had cancer but no clue if it had spread and today was the day they would try to find out.   We started the morning with Nuclear Medicine.  I went into the imaging room, my hospital gown showing my baby bump ever so slightly.  I laid down on the table and a very sweet radiologist told me how sorry he was this was happening to me and hoped that me and my baby boy would be okay as he injected the very painful radioactive dye into 4 sites around my “tumour” on my arm.   Painful was an understatement.  He said it would feel like 100 bee stings for each needle and he was not kidding.

The technician came in and finished my imaging and took me to the OR waiting room.  I met with the pre-op nurse and got ready for surgery.   The anesthetist met with me again to go over the risks and then my surgeon came to speak to me.  I signed my consent and she again told me this was not a choice, I had to do this.

The healthcare team came to get me.  I said goodbye to my husband, and with an “I love you” and touch of my belly, he was leaving and so was I.   They brought me to the room and helped me on the table.  They started prepping me and I started to cry.  I could not even speak to answer them and I put my free hand on my belly.   The most amazing nurse grabbed a fetal Doppler.  She could see I was struggling and in a few moments, I could hear his beautiful heartbeat and she stayed there letting me listen so I could stop crying and answer the questions.   She remained there while they put me to sleep so I could drift away with thoughts of my beautiful baby boy.

I woke up in the recovery room.  My arm was bandaged from elbow to shoulder and I had a drain hanging from my armpit.  It was much more than I expected but I drifted back to sleep.   I woke again with a nurse trying to find his heartbeat but she could not, I tried to cry but instead I was out again.   I felt a tap on my shoulder and a man was standing over me smiling.  He said he was the OB on call.  They were going to do a quick ultrasound because they could not locate a heartbeat.   He brought the portable ultrasound machine over and began his exam.   I remember him saying “oh there you are!” and a nurse saying “thank God”.  He motioned to the screen for me to see his heart beating but I had no glasses on.  It did not matter, I was just happy to hear the words ‘He was okay’.

Recovery was not very pleasant.  The incision was much bigger than I was expecting.  Sleeping was a challenge with the stitches and the drain.  The pain was awful and being pregnant, I had to limit what I could take for it.  The first time the home care nurse took my bandages off, I was brought to tears.  They had taken so much out I was speechless.   I followed up with my surgeon a few days later and she removed my drain, which provided some relief.  My stitches came out 10 days later, but the location of the surgery made it very difficult and painful to move my arm.  It was right on the bicep where the muscle bulges when you move your arm or bend and with the amount they had to take out my arm was very tight.

It took a very long and stressful three weeks to get the lymph node results.   I got the call at work that my nodes were clear and they think they got all the melanoma.  Hurray!!!   I also saw the Oncologist for the first time that afternoon.  He was a nice man.  He reassured me that it was a good sign that the nodes were clear but we still needed to be careful.  I needed to watch for recurrence or signs of spreading as they can’t always get every single cell and because there could be a genetic component for me I needed to be vigilant.   He said someone my age with this worries him because I have another 50 or so years for it to come back and spread (great!) but he reassured me that with the advances they have made that if caught early enough this deadly disease could be managed.  I have had more biopsies on my body since, which have all come back negative as well as a biopsy on a non-healing ulceration on my scar which thankfully showed no sign of recurrence.

On February 10th, 2017 I gave birth to a healthy baby boy who has no signs that any of this has affected him.  He is a happy and wonderful baby who is approaching his first birthday.

My physical scars have been one the hardest parts.  My scar turned into a keloid which caused even more pain and tension in my arm resulting in 24/7 pain.  I have nerve damage and damage to the bicep muscle from surgery which is another source of 24/7 pain.  The keloid has also made my arm a bit disfigured with an exaggerated raised and awful looking scar that draws a lot of negative attention.  I have been receiving cortisone injections into my scar every 3 months with hopes of improvement but my arm just does not want to cooperate and now I have even more issues with my skin thinning, tearing and ulcerating.  I will be going to for a skin graft on January 12th, 2018 to try to fix this all and biopsy everything again to be sure there is no recurrence.

So here I am over a  year later.. it’s been a year of 24/7 pain, a year of comments about the “awful” appearance of my arm, a year of worry and stress, a year of injections in my arm but none of that matters because I am here holding my baby Ryan and my daughter Kara with my husband… I am often overwhelmed with emotion because we are here and we are okay.

I shudder to think what would have happened if my conversation had not been overheard or if I had just given up and ignored that voice inside telling me something was not right.  The fear of recurrence is never gone and I am just trying to take everything as it comes.  I go to my melanoma support group run by MNC every month and find it extremely helpful and like another family.  I did the Strides for Melanoma walk this year with my dad, husband and friends to help raise money and spread awareness about this horrible disease.  I will tell anyone who will listen about it to spread knowledge and encourage people to advocate for themselves and trust their guts.

It is hard looking forward and not worrying about this but we are just trying to live our lives to the fullest and be as happy and healthy as we can.  My children give me the most positive strength and lift me up when I am feeling down.   We are moving forward cautiously optimistic.


 

IMA

 

Photos provided by Kristin de Montbrun
Family portrait by PB&J Photography
https://www.facebook.com/pg/spreadsomememories

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