Living with melanoma: May 2007

Well, after having malignant melanoma (MM) for almost 2 years, and knowing about it for 14 months, I figured it's time for me to start documenting everything I'm going through. This will probably be a long entry, because I'm going to start from the beginning of myMM journey.

In July of 2005, while I was working on my final thesis paper for my masters degree (M.Ed.), I went to "Les jeux de la Francohonie" as a chaperone in Winnipeg, Manitoba. My charges were the girls' contingent of the track and field team, my 18-year-old daughter Jessie being one of them. At the track, the mosquitos were enough to pick you up and carry you away! At the end of each day, we'd congregate in the dorm, and count fly bites. It was then that I noticed one that looked a little different -- bigger, not so itchy, but seemingly a fly bite nonetheless, right at the top of my calf muscle behind my right knee. Once I returned home, the fly bites started to disappear, except this one. I thought at first that I had been bitten by something other than a mosquito, and it might take longer to clear up. Then one day I nicked it while shaving my legs, and it bled a lot. I figured that was the end of it. It scabbed over, the scab healed, but the fly bite was still there. Then, didn't I go and nick it again, but this time, it bled like a bugger -- I thought it would never stop -- but it did, and it healed again without reducing the fly bite at all.

By October, it was getting on my nerves because it was right in the line of the elastic on the top of my knee-highs. So I went to see my family doctor and life-long very dear friend, Marie O'Dea. Her first impression was that it was a dermatofibroma, nothing to worry about, but sent me to the "lumps and bumps" clinic anyway. My appointment was for Jan 27/06 with Dr. David Pace.

By the time January rolled around, another little pea-sized lump had developed underneath the skin right next to the fly bite, which had also grown to the size of a small marble. There was another similar pea-sized lump about 3 inches horizontally toward the top of my shin. The thought crossed my mind that some Manitoba insect had laid eggs in my skin, and that grubby little insect nests were starting to colonize. YUCK!!! At the time, that was the worst case scenario I could imagine. Dr. Pace's first impression concurred with Marie's diagnosis of dermatofibroma, and he offered me the option of having it removed right then and there, or waiting 6 months for day surgery. I actually deliberated a few moments. If I had it removed now, I would have to miss school for a few days, and I wouldn't be able to take my little kindergartens out for some fun in the snow as I had promised. But I'm a pretty practical person, so since I was there, why not do it now? He took the fly bite and the adjacent little lump in one cut, and the other little lump in another, stitched me up, and off I went.

The Day I Found Out...
March 21, 2006 - that fateful day which will forever be a point of reference in my life -- the day my whole life changed forever.

My next appointment was March 8, and I went, but the results weren't back yet -- or so said Dr. Pace. I was to find out later that the results had been received, but Dr. Pace was so shocked, he sent them back for re-evaluation. On March 21 (my friend Jane's birthday), I went back again for the results, expecting to hear that it was nothing to worry about. Was I ever wrong on that one!!!! What do you mean, melanoma? What's melanoma? What's metastatic? What are positive margins? What's a wide local excision? What do you mean, serious? potentially fatal? This wasn't happening to me!!! This is crazy! I feel fine!!! There's nothing wrong with me!!!

I left the hospital in a daze, with an appointment for a CT scan March 29, surgery March 30, and an appointment with an oncologist April 3. I had to talk to someone. Jim was in meetings at head office, so I couldn't call him. I couldn't go home and tell the kids -- not yet. I'll go to Mom's. No, I can't. No parent wants to hear this kind of news about their child, no matter how old you are. My sister, Doreen. Yes. I'll go see Doreen.

When I arrived in Doreen's office, she was in a dinner meeting, but I asked to see her anyway. She came out from the meeting, and her first fear was that something had happened to Mom or Dad. I asked if we could talk privately, and we went into an empty board room. I said "Remember that lump I had removed from my leg? Well I got the results today..." I hesitated, because I couldn't bear to say the next sentence. I took a deep breath, and for the first time in my life, I uttered those fateful words..."I have cancer." Then the tears flowed -- from both of us. As Doreen hugged me, I babbled on through my sobs all the new words I had just learned, not realizing they would eventually become part of my everyday vocabulary.

Doreen took the rest of the day off, and got me to phone to make an appointment with Marie. I got in right away. Marie had not yet received the pathology report, but Dr. Pace had given me a copy, and I passed it to Marie. As she read it, her body shrunk back into her chair, and tears came to her eyes. I knew this wasn't good. She was in utter shock, and kept saying that this was atypical. No way did that lump look like melanoma! Once she got over her personal shock (remember, we've been friends since kindergarten), she put on her professional face, and got down to business. The pathology report said that this was a metastatic lesion, so the search was on for a primary. She booked me for x-rays, ultrasound, and a complete eye exam, all within the next few days.

Doreen and I then went to Mom's to break the news to her and Dad. Dad couldn't believe it, and went into his bedroom to say a rosary for me. Mom didn't flinch. "Oh well" she said, "This is just another hurdle we'll have to get over -- and we WILL get over it." Don't mistake that as denial on my mother's part. She is a very strong woman, with a very strong faith. In 79 years she has been over a lot of hurdles, and she has learned to take all of them in stride -- even the tough ones like this. Then I phoned Jim -- his meeting was finished by then -- and I told him. He was at a lunch meeting, but he left right away and came to Mom's. We talked strategy of how and what to tell the kids. We decided to tell them the bare minimum, and wait for the results of all the tests I had coming up.
There were sooo many people I wanted to share this news with, and I didn't have it in me to call everyone, so I wrote an email and sent it out to multiple recipients:

Subject: bad news

Hi everyone,
I'm sending a sort of bulk email to all my close friends and colleagues to inform you about some bad news I received today, and I wanted you to hear it from me personally rather than you hear about it through gossip. And, to be honest, I don't have it in me to phone you all personally, as I have been on the phone all night with my and Jim's family. So here goes:
Late January I had 1 large and 2 small lumps removed from my leg (upper calf, just behind the knee). It was actually a biopsy, which I found out today was metastatic malignant melonoma. At this point this is all I can tell you for certain: They didn't get all of the cancerous cells, so I have to undergo surgery again on my leg next Thursday (Mar 30) to have the rest of it removed (too bad it's not my belly so I could get a tummy tuck for free); it is uncertain whether the leg is the primary site, so I have to have a CT scan done next Wednesday (Mar. 29) to determine if there is another possible primary site of the cancer; this cancer is not necessarily terminal, but it is nonetheless uncurable, however there are many treatment options available. As you can well understand, I have a tough road ahead of me over the next few weeks. I'll know more after the surgery and CT scan. Despite the shock of all this, rest assured that I am in relatively good spirits, hoping that the CT scan will come back negative, and the surgery will get all the cancerous cells. Jim is taking some time off to be with me. In the meantime, I will be off school until Easter. Feel free to call me if you want, because the surreal part of all this is that although I have received this news, I still feel fine. It's what awaits me down the road that's scary. I'll write you all back when I get the results of the CT scan and surgery. Keep me in your prayers.
Your friend,
Sharyn

Wednesday, March 22, 2006
Today was Jim's 46th birthday, and what a gift I gave him -- a wife with cancer! I had gotten over the shock, and decided that life would go on as normal -- as hard as that was. I went to the hospital for my chest x-ray, and once that was out of the way, I was determined to get back to normal. Matt (Jim's eldest son in Montreal) had called a few days earlier about what to give his Dad for his birthday. He and I had decided we would go halves on a GPS. Since Jim had taken the day off, I told Jim we would be going birthday shopping today. He protested, but I told him "Today is your birthday, and on your birthday, you go birthday shopping. So we're going shopping." And we did. And we bought a GPS at Canadian Tire.
Every Wednesday I would go to Weight Watchers for my weekly weigh-in. Jim asked me why I was bothering with that. "Today is Wednesday, and on Wednesdays I go to Weight Watchers." So that's what I did -- and I had lost another 3 lbs, for a total of 15 lbs.
Pop and Bonny (Jim's Dad and wife) had phoned the night before, and insisted we go to the Cabot Club for dinner for Jim's birthday. Jim didn't want to, but I was intent on keeping things normal. "Today is your birthday, and on your birthday, you go out to dinner. So we're going out to dinner." And we did. And we had a beautiful meal in a swanky upscale atmosphere.
When we got home, I sent another email to friends and family:

Subject: Day 2
Hi again everyone,
To all who responded to last night's email and phoned today, thank you for your support and well wishes. I have a lot of good people praying for me, and I really appreciate that.

Today I went to the HSC for an x-ray on my back and legs -- the first step in the hunt for another cancerous site (if there's one to be found). I'll have those results in a few days. I'm in surprisingly good spirits, and I'm concentrating on the silver lining of this cloud. Jim is doting on me, and anything I say goes, so I can capitalize on that. :>) I'm off work, and diagnosis aside, I am feeling fine physically, so I can take some time for myself. I went to Weight Watchers tonight (I'm trying to maintain as much normality as possible) and I was down another 3 lbs for a total of 15 lbs. Yahoo!!! My attitude is that there is nothing I can do about this situation right now, so whatever awaits me down the road can stay there. I'm living for the moment, and I'm enjoying the good health I'm in NOW. What happens later, I'll worry about later. Today was also Jim's birthday, so we went out shopping for his birthday gift, and we went to the Cabot Club for supper -- a nice treat of fine dining. It was delicious!!!! Rest assured that I really am holding up well. Yesterday was a bummer, but that's past, and I'm staying positive and optimistic for the present and the furture.

I'll be in touch in a few days,
Thank you all for everything
Sharyn

Then, I decided to surf a bit on the internet to see exactly what I had, and what this diagnosis meant. Wrong move. My optimism went down the tubes in one fell swoop! The first sentence I read was "The prognosis for metastatic malignant melanoma is dismal..." Oh no! WTF??? My mind, which I had up to then kept bound in normalcy, finally broke free, and began to race in every direction. I was going to die! I've got to do something! What about my kids? I'll never get to see that pension I worked so hard for. What about doing my Ph.D? What about the pay-off time Jim and I worked so hard for? What about our golden years? What about Mom and Dad? My brothers and sisters? Neices and nephews? In-laws? Friends? What about weddings? graduations? grandchildren? My God, I'm not ready for this!!!! My kids need me! Jim needs me! I can't just bail out on everyone I love! What's it all about if you can be just whisked away in the blink of an eye?
I didn't sleep a wink that night. I cried, I paced, I tossed and turned. By dawn, I started watching the clock, waiting for the appointments office to open at the Health Sciences Centre. At 8:00 sharp, I called, and asked for radiology. Like a babbling idiot, I cried to the lady on the other end about how I had been just diagnosed, I'm not sleeping, not eating, I'm sick to my stomach, I have a CT for next Wednesday, but I'll have lost my mind by then, is there any way you can get me in sooner?...... "How's tomorrow at 1:30?" God WAS listening, and sent me this angel (Lisa was her name) to expedite my case.
I called Marie to tell her about the change in appointment, and she was thrilled. She told me when I was there to ask who was reading the CT scan, and to call her with that information immediately after the scan. In the meantime, she prescribed some Ativan for me to help me sleep.

Friday, March 24, 2006
I had a good night's sleep, thanks to the Ativan. I wasted no time this morning taking a bath, and getting ready to go for the CT scan. We got there about an hour early -- not anxious??? -- and to our surprise, got in right away. I drank the solution they give half an hour beforehand, and then went in for the scan. Despite all the intimidating equipment, there was nothing to it. They told me Dr. Collingwood would be reading the scan, so I phoned Marie right away to tell her that. She said she'd get back to me in a few hours.
Jim and I decided to do something "normal" for the next little while, so we went to the new Sobey's on Kelsey Drive to get groceries. The cell phone rang -- hold your breath -- it was someone from Jim's work. The cell phone rang again -- hold your breath -- it was Julie, wondering if we had heard anything. Just as we finished going through the check-out, the phone rang again -- hold your breath -- it was Marie. THE CT SCAN WAS NEGATIVE!!! Coincidentally, the drizzle and fog outside had dissipated, and as I walked out the door -- no, FLOATED out the door -- still talking to Marie, the sun started to peek out from behind the clouds. That was God, reassuring me that I would be okay. I immediately phoned Mom and Dad, all the kids, and Jim's family to relay the great news! When I got home, I raced to the computer to send out another email:

Subject: Good news
Hi everyone,
MY CT SCAN WAS NEGATIVE!!!! It still doesn't solve the mystery of where the primary source of the cancer is, but at least it's not in a vital organ, so I won't die anytime soon. That was my biggest fear. But they're running out of places to look. On Monday I will be having my eyes checked. If that's negative, the only place left is somewhere else on my skin, and whatever they find, they can cut it out. And the surgery on my leg is still scheduled for next Thursday. Thank you all so much for your prayers and support. They worked!!! :>) We can all breathe a little easier now. I'm still not out of the woods, but I know there's no wolf ready to eat me up. Have a great weekend everyone. I sure will! I think maybe a bottle of wine is in order???? I'll let you know how my eye exam turns out.
Sharyn

Sat, Sun, Mon, March 25-27

The weekend was uneventful. I was just biding my time, waiting for Monday to come so I could go see the opthamologist. But Monday came with a vengeance! A huge snow storm, and everything shut down -- malls, hospitals, schools, universities, busses -- everything! For my whole life, as a student and as a teacher, there were no sweeter words to me than "SNOW DAY!" But today, I cursed the snow day, as it meant yet another day of waiting. The opthamologist's office called to rebook for April 27th. WHAT???? I can't wait that long!!! In a panicked state, I explained my situation, insisted on an immediate appointment, and was given one for first thing the next morning.

Tuesday, March 28, 2006

So Jim and I showed up at 8:00 Tuesday morning. It was hard getting around, as the storm had raged all night and had just eased off. No one was at the office, but we waited. By 8:30, the staff started showing up, one by one. I guess they all had a mountain of snow to get through before they could come to work. The examination was very thorough, and I was very impressed with Dr. McEcheran. But there was no melanoma to be found. I went home, blinded from the drops, and when my eyesight returned to normal, I sent another email:

Sent: Tuesday, March 28, 2006 9:53 PM
Subject: Tuesday's news
Hi again everyone!
Just to update you all... Today I had my eye examination, and everything is all clear. No eye cancer, no cateracts, no glaucoma, no nothing! What a thorough exam I had! That opthamologist (Dr. McEcheran -- really nice guy!) did everything except take out my eyeballs and polish them up! I then went to see Marie (my family doctor and dear life-long personal friend), and she went over every inch of me to look for suspicious moles. She pinpointed 4: one on my back, two on my left hip, and one on my right leg, not far from the first lump that was removed. I have to show them to my surgeon on Thursday and ask him to remove them to send for a biopsy. Hopefully one of them will hit the primary site jackpot.

I was contacted today by the Cancer Centre, but I didn't speak to them because I was at the doctor's. I'll have to call back tomorrow. I'm assuming they want to book me for treatment following my surgery. That's a good thing, I know, but still the stark reality of all this is all the more real with an appointment at the Cancer Centre. That's tough to deal with, However, Jim says that these are the people I DO want to deal with because they know the most about this, and can answer all my questions.

As if this cancer stuff wasn't enough, last night I lost the temporary crown that I had on a tooth that was eventually destined for a root canal, so I've been going around all day with a tooth hopping crazy with exposed nerves. I have to go to the dentist tomorrow to get another temporary crown put on, but in the meantime, my root canal has been scheduled for 3 weeks time, on the very day -- get this -- of my BIRTHDAY!!!! How cruel!!!

I did get a bit of information clarified,which I should probably straighten out for you too. I guess in my stressed state, I got things a bit confused. The CT scan that I had last week was not meant to find a primary site. It was meant to ensure that there was no other secondary site in any of my vital organs, which would have been pretty much game over. Either way, it's still good that it came back negative. The primary site, I'm told, is another site of melanoma, which is why all my 10 million moles are being scrutinized. I asked Marie today "Why don't they just remove all of my moles and be done with it?" She answered "Sharyn, there wouldn't be enough skin left on you to sew you back together." (Haha) So I may look like a patchwork quilt by the time they find the primary site, but that's okay. Don't scars add character????

That's all my news. I won't be writing again until after my surgery, which is 10:00 Thursday morning. Till then, continue to keep me in your prayers. I appreciate every one of them.

Sharyn

Thursday, March 29, 2006

Well this was surgery day. In a few hours, all those nasty cells would be gone, and I could get on with my life. I was done in out-patients - a wide local excision and 3 biopsies of suspicious looking moles. At this point, they have still not found a primary, but I'm beginning to think that there is no primary to be found. I think the first lump I had -- the fly-bite -- was the primary. But what do I know?
When I got home, I went straight to bed, and Gus, our black Cocker Spaniel, stayed right next to me the whole time. Monty, our blond terrier, would have gotten up in bed with me too, but he's too old to jump up onto the bed. I got Jessie (18) to post another email:

Subject: Update
Hello,

This is Sharyn's daughter Jessie writing. Mom isn't feeling up to writing an email, so she asked me to do it for her.

Mom's surgery went well. I think there were a lot more cancerous nodules than they expected, so she has a fair-size chunk removed from her leg. Two doctors worked on her leg for 1hr 10 min. She has numerous dissolvable stitches underneath and 10 exterior stitches over a 5inch incision. They also removed 3 other moles (leg, hip and back) which they will test for malignant cells. Mom's recovery will take several months, as she has a lot of new tissue to regenerate in her leg. She can hobble a bit now with a cane. She has painkillers (which I think she's enjoying), but she's been in bed since she got home from the hospital. She's in good spirits and is feeling extremely optimistic She will get her results on April 21st, I'm sure she will be in touch with you before then when she's able to get downstairs to the computer.

Thank you for all you've done for her,
Jessie

April 1, 2006
Today, being April Fools' Day, I was hoping someone would tell me that this whole cancer thing has been someone's sick idea of an April Fool joke. But no joke. It's real, I had the surgery, and I'm on the mend. Here's my email to everyone:

Subject: Doing great!

Hi everyone,
Well, after 2 bedridden days, I'm finally up and around -- slowly hobbling with a cane, and sometimes braver without a cane. I'm still pretty much confined to home, but I did get Jim to take me out for a drive today to enjoy the beautiful sunshine -- pretty stupid for someone with melanoma, when you think of it :>) Besides the hobbling, I can't yet straighten my leg, nor place my foot flat on the floor. I'm in super good spirits -- so much so that I feel almost guilty receiving so many kind words and gestures, and so much care and concern. But then again, I guess that's the very thing that has helped me stay so positive. You've all been so wonderful!

As I heal, I'm taking one day at a time, and enjoying each healthy minute of every day. And every day gets better. I will have my results in 2-3 weeks, so until then, there's nothing I can do but enjoy life. When I get really mobile, I might even finally paint my bedroom and livingroom. Feel free to call, send an email, or drop by (call first to make sure I'm home). I'm very optimistic right now, and if the primary site has not been found from this surgery, at least we've bought some time (hopefully a lot) to keep looking.

Thank you again so much for everything,
Your friend
Sharyn

Monday, April 3, 2006

Today we went to the cancer centre for the first time. Jim dropped me off by the door and went to park. It was a drizzly old day, and as I hobbled towards the door, I noticed the bushes in the Garden of Hope, their hints of buds fighting to come to life, yet fearful of the cold air and lingering snow. I stopped at the door, and gazed at the ominous words above it "CANCER CENTRE". I wondered why anyone would select gold letters to inscribe such a horrible title? Probably to symbolize the insidious nature of this disease. Then I wondered why anyone would even put those words above the door at all? Why couldn't they entitle it the "H. Bliss Murphy Centre", and leave the cancer part out of it. We all know what this place is, but it doesn't have to be smeared in our face. It's one thing to walk into that building at all, but knowing it's for yourself, that's tough. I asked myself if I had the courage to walk through these doors alone, or if I would wait for Jim to join me from the parking lot. Well, I reasoned, this is my journey, and despite all the prayers and support I'm getting, I still have to go through everything alone. I'll even have to die alone. So I may as well get used to it. I took a deep breath, opened the door, and passed underneath those wickedly disguised words, like walking into the mouth of a ravenous monster. It's a feeling I will never forget.

Inside, I was greeted by a very attractive receptionist, who treated me like I was an old friend. I waited in the lobby for Jim to catch up with me, and we went downstairs to Clinic A. The waiting rooms of both Clinics A and B were packed full of people, obviously at varying stages of cancer. Some were bald, some had grey skin, some looked as well as I did. I was struck at how many people were travelling the same road as me. I wanted to interview every one of them, to find out their source of hope. Although our appointment was for 1:30, it was almost 4:30 before we got in to see Dr. Rorke. He was fairly young, handsome, a lot like Paddy Greene (Trish's 18-year-old son) would look like in 15 years. His intern today was Katie Smallwood. Small world!! In 1985, when I was living in Corner Brook, I was with Theatre Newfoundland and Labrador (TNL), and I played Maria in the Sound of Music. Katie was only about 4 at the time, but she played the youngest of the Von Trappe children. Her dad, Dave Smallwood, played Captain Von Trappe. Now, 21 years later, she was examining her stage step-mother for cancer. She offered to excuse herself from my case,but I told her I was glad she was there.

Dr. Rorke's message was not at all encouraging. The crux of it is in the email below. Suffice to say, when Jim and I left the cancer centre, we couldn't even look at each other without bursting into tears. As we waited at a red light, Jim said "You know what we need to do? Book a flight to Florida, and get away from all this." As much as I liked the idea, the sad reality was in my response. "Jim, Honey, this is one problem we can't run away from. This is real, and we have to face it. Going to Florida won't change anything. Besides, I still have stitches in my leg, and I have more appointments this week. I know it's hard, but we have to take this one head on." Then nothing more was said for the rest of the drive home. We both knew this was real, but we didn't want it to be.

Subject: Cancer Centre visit
Hi everyone,
I had my appointment at the Cancer Centre today, and I have to say it certainly was a very sobering experience. And unfortunately, I'm really no further ahead in terms of answers, as the pathology report from my surgery is not back yet. That won't be in for another 2 weeks. But I did get more information about my particular form of cancer. It is in the 3% of rare forms of melanoma. Neither Chemotherapy nor Interferon treatment can arrest this type of cancer, so they are not options. Because my cancer is metastatic (spread from another location) there's no telling whether it has spread to one or more other locations in my body. While it would be helpful to find the primary site, they may never find it. Even if they do, it doesn't alter the fact that it has potentially spread elsewhere, and there is no test to locate it. This is a very insidious form of cancer, and can attack virtually any part of the body. My clear CT scan and eye exam are encouraging, but he is sending me for a bone scan and a sentinel lymph node biopsy to make sure those areas have not been affected either. In the meantime, here is the best case scenario: If the surgery successfully removed all the nodules in the secondary site, and located the primary site, I would undergo radiation treatment on the surgery site to zap any possible micro-nodules that went undetected by the eye or the scans. After that it's a waiting game -- waiting to see if and when and where another site becomes affected. I will forever be under "vigilant scrutiny" with frequent scans and tests to detect any new sites. If a vital organ becomes affected, I can have chemotherapy, but it will be pretty much game over. There is a chance in a million that they got it all in surgery, and the radiation will put the lid on it for good, but not likely. Even still, there's no way of knowing if that has actually happened. I will always have to live with that dark cloud over my head, wondering if this cancer will pop its head up again. He told me that of all cancers to have, this one is the worst, the least detectable, the least trackable and the least treatable. So I guess I just have to wait for the report, have those remaining tests, and hope for the best. At this point, hope and prayers are all I really have. I could last a year, but I could last 25 years. I'm rooting for the 25 year plan. :>)
Do keep in touch and help me stay positive.
Your friend,

Sharyn

Sent: Monday, April 10, 2006 7:53 PM
Subject: The results are in!
Hi everyone,
I got the results of my surgery today. In the re-incision in my leg, they got everything. All margins are clear, and there is no evidence of the cancer spreading to my lymphatic system. The mole that was removed from my leg was benign. The moles that were removed from my back and hip were both in the early stages of melanoma, but luckily, they were completely excised. These 2 moles are not related to the cancer that was in my leg. They are 2 more separate spots that could have been trouble, but now they're gone. They still haven't found the primary site, so the other tests will continue as planned. In the meantime, I am feeling quite relieved that they got that much cancer removed, but the hunt continues. I want to thank everyone for all your prayers, emails, positive enery and kindnesses. I am truly convinced that love conquers all!
I'll keep you all posted on new developments
Love to you all,
Sharyn

Sent: April 17, 2006

Subject: Cancer Centre visit #2
Hi everyone!
Today I had my second visit to the Cancer centre, and it was significantly more encouraging and positive than the first. Because of the huge success of my surgeon removing the metastases, residual cells and root of the cancer in the affected area, and clearing "generous margins" of healthy tissue, and because of all the negative results in all the tests so far and in a physical performed today, my oncologist is inclined to believe that the primary site was located in the secondary site, and was therefore removed by the surgery. Apparently, in rare cases of melanoma, there can be a cancerous site that goes unnoticed and regresses back into the skin, and then spreads from its hiding place, forming a secondary site with no identifiable primary site. (I think I got that right.) That's what they think happened in my case.

However, to be absolutely sure there is no other spreading, he is going to go ahead with a sentinel node biopsy within the next few weeks. That is a surgical procedure wherein they inject a dye into the lymphatic system near the original site, and the dye runs up to the lymph nodes in the groin area. Lymph nodes are positioned in bunches, like small grapes, with one particular node that is considered a "gatekeeper". That is the sentinel node, and any spread of disease must go through the sentinel node before it can proceed into other nodes. They will surgically remove the sentinel node and check for signs of cancerous deposits. If there are none (which I'm hoping), then it is safe to assume that there is no further spread. If there is evidence of cancer, then they will have to remove the surrounding lymph nodes, but that is major surgery for another day, and an alternate game plan. So we have to wait and see.

Because the moles removed from my back and hip were in the early stages of melanoma (not serious and totally unrelated to my leg), I will be assigned to a dermatologist.

I asked him about having a PET scan done in Montreal, but he thinks we should wait until we get the results of the sentinel node biopsy. He will make a decision on radiation treatment and a bone scan after that biopsy as well, and after he confers with other colleagues.

On Friday I have to see my surgeon, who will set me up for physiotherapy for my leg. I still can't straighten it out, and the muscles are starting to seize up. I was told today that physio should be started as soon as possible before more muscular damage is done through lack of usage.

So overall, it looks like I can breathe a sigh of relief for now. My feelings leaving the Cancer Centre today were a far cry from the dismal fate I was facing after my first visit. I am now much more optimistic that I will live many, many more years, and I will cautiously state that I am a very lucky lady! I will still be under continuous monitoring, beginning with another CT scan next month, but that is a good thing, as anything suspicious will be caught early.

Once again, I want to thank everyone for your emails, visits, prayers, positive energy, gifts, meals, cards, flowers, etc. To say your collective kindness was overwhelming would be an understatement. It is so comforting to know that I am surrounded by so much love and friendship. And really, isn't that what it's all about? :>)

With deepest gratitude and appreciation,
Your friend,
Sharyn

Saturday, April 22, 2006

Today I received the most wonderful news! Crystal and Mark are going to have a baby! Although Mark is not my biological son, he is my stepson, and I have been more of a mother to him than his own mother, so that makes me a grandmother, no matter how you look at it. And I couldn't be more thrilled!!! Mark is Jim's second oldest son (21 - almost 22), and he and Crystal have been sweethearts since junior high. Crystal is a real doll, so sensible, and I love her to bits. She is the best thing that ever happened to Mark. She wanted nothing to do with Mark when he was into his "wild phase" a few years ago, (smart girl), but once he straightened himself out and got back on track with his life, they got back together. They moved in together in January, and now she's expecting. Perhaps under normal circumstances I may have taken this news with a bit of alarm. After all, this wasn't planned, and neither of them are well-established financially, but none of that matters. They have known about this for quite some time, and when I asked them why they didn't say anything, they said they thought I had enough to deal with already, and they didn't want to add to my stress. But now that the results are coming in favourably, and the fact that Crystal is starting to show a bit, they decided to tell me. I said "What??? I wish you had told me sooner! Not being around for grandchildren was one of the things I was so stressed out about!" Anyway, they don't want me to tell Jim, and I said I wouldn't, but I have to confess that I won't be able to keep that promise. I know Jim, and I know Mark. Jim's initial reaction will not be good, and Mark will take that to heart. So I have to tell Jim now so he can digest it, and tell him to act surprised when Mark finally gets up the nerve to tell him. Anyway, Crystal is due on November 21, and I can't wait!

Sent: Saturday, April 29, 2006 12:14 AM
Subject: Negative

Hi everyone,
Just wanted to let you all know that I had a mammogram done on Thursday, and I got the results today -- NEGATIVE!!!! Yahoo!!! That's one more place I know I don't have cancer.

No word yet on when my bone scan will be. I am scheduled for the sentinel node biopsy on May 16. That's the earliest they could fit me in, but if there's a cancellation in the meantime, I will be called. I won't get the results until June 1st (Ricky's birthday). May 16 is also the day of the MUN awards ceremony, and I am to receive an award for academic excellence in my M. Ed. program and be named a "fellow of the School of Graduate Studies". (La-ti-dah!) I was so looking forward to that, and I'm really disappointed I will miss such a highlight, but this biopsy is more important, so I'll have Julie and Jessie go to accept it on my behalf.

I still haven't abandoned the idea of a PET scan in Montreal. My oncologist says it wouldn't make any difference and wouldn't add anything new to what we already know, but I'm beginning to wonder. My oncologist and surgeon seem to disagree on the possible origin of the cancer and method of treatment, so I'm getting conflicting information. I have sent an email to the Ville Marie Centre in Montreal with more information about my case and some questions, so I'll wait and see what they have to say.

In the meantime, I'm feeling fine. Physio has started, and I'm feeling a difference already -- no more limping. I won't have any appointments for the next week, except for physio Tues and Thurs. It will be the first week with no Dr. appointments since my diagnosis March 21. The numbers on my hospital card are just about worn off!

I'll keep you all informed as new things develop.
Hugs
Sharyn

Sent: Sunday, May 14, 2006 11:23 AM
Subject: Checking in
Hello everyone,
I just wanted to touch base with you all, as I haven't written in awhile. Actually, not much has been going on for the past 2 weeks except for physio, which I finished last Tuesday. I have recovered wonderfully from the first surgery, but now I'm ready for another one (the sentinel lymph node biopsy) this coming Tuesday (May 16). I spent most of last Friday at the hospital getting all my pre-op stuff done -- EKG, x-rays, vital signs, etc., and a meeting with the anesthesiologist. When he looked at all my medical information, he commented that I am "a very healthy lady". I responded jokingly "Yeah, except for the cancer, I'm in great shape." How ironic that I can be so healthy, yet in such medical danger! It just goes to show how insidious cancer can be. But I'm sure my otherwise good health is helping to keep this cancer at bay.

After my surgery on Tuesday, I will be laid up again for awhile. It will take about a week to get the results from the SLN biopsy, so I'll be in touch again when I know. Here's hoping for a negative result!!!

If you're interested in learning more about malignant melanoma, I found a really good web-site that is informative and easy to read. Here it is.
http://cancer.caring4patients.com/Melanoma_Center.aspx My cancer is actually metastatic malignant melanoma with a non-identified primary site, so some aspects of my situation are not covered, but the site does clearly explain Stages 0-4 and respective treatments. The SLN biopsy is crucial in determining the stage of my cancer. Basically, if it's negative, I'm likely Stage 2, which would be great news! If it's positive, I could be either Stage 3, which is not so good, but not terminal, or I could be Stage 4, which would likely involve chemo and hoping for the best. At least in a week from now, I'll know where I stand.

I'll be in touch after my surgery.
Hugs,
Sharyn

Sent: Wednesday, May 17, 2006

Subject: Post-op

Hi everyone,
Well, the surgery is over, and what an experience! At 8:30 am I went to Nuclear Medicine to have not one, not two, but EIGHT excrucuating injections of nuclear fluid at the cancer site, which is a sensitive area anyway (behind the knee), but doubly sensitive because of the surgery in March. Once that "fun" was over, it actually did get really interesting -- and painless. I had to lie on an x-ray table, and was slid into a tunnel-like machine equipped with upper and lower cameras. The image of the nuclear solution travelling through my lymphatic vessels appeared on a computer monitor, and Jim and I could watch it all floating around. Really NEAT!!! Once it reached the first few lymph nodes, they used a pen-like instrument (probably magnetic) to point to that spot on my upper leg, and then marked an X with a marker. The Doctor who did this was Peter Hollett, a good friend of my brother-in-law Mark Noseworthy, and an old school friend of Jim. So it was more like a reunion than an impersonal appointment.

By 10:00 we headed for Day Surgery, but they were way behind. I didn't get called in for prep until 12:30, and I didn't get to the OR until almost 3:00. My anesthesiologist was a life-long friend Mary Daly (by special request), and I was pleasantly surprised to see Heather Dillon as the assisiting OR nurse. Heather is my student Julia's mom, whose husband died of cancer only one year ago, so she and I have bonded through helping Julia cope with her Dad's death, and now through our cancer connection. She was actually going off shift when I arrived, but offered to stay for my surgery. I really appreciated that, as I feel more comfortable being cared for by people I know.

During surgery, they injected a dye at the cancer site to travel through the lymphatic vessels, opened the lymph node site marked by Peter Hollett, and when the dye reached that area, they could tell which node was the sentinel (the first one), and Dr. Wirtzfeld (surgeon) removed it. I don't know if she only took one node, or two. Anyway, I have a lovely 6 square-inch blue abstract art tattoo on the back of my leg from the dye injection. (It's permanant ink.) I tried scrubbing it, but only a small bit came off. I hope a lot of it will fade away, but if it doesn't, what the heck! It's a good battle scar. The incision itself is about 2 inches long, and is located at the top of my leg about 2 inches below my panty-line, so it's clear of irritation. I have disolvable stitches, so I don't have to go back to the hospital to get them out.

I was back in recovery by 3:50, but it took me a long time (over 2 and a half hours) to shake the anesthetic. My oxygen level kept dipping, I was nauseous, in pain, and my throat was raw from the tube inserted during surgery. Not nice at all. I begged the nurse for some water, as I hadn't had anything to eat or drink for 20 hours, and she finally gave in and offered me a 1-ounce medicine cup of water. WOW! :>)

It was almost 7:30pm by the time I got home, and Jim put me right to bed. He left some soda crackers and water beside the bed, so after awhile, I started nibbling on that, and I began to feel much better. By around 9:00pm I was up and about, and had a nice cup of tea and Coleman's homemade bread toast. That went down sooo good!

I took one pain killer last night before bed, and slept really well. This morning, despite some mild discomfort in my groin, I feel great! However, I do need to rest. Jim has taken the rest of the week off, so he wants to take me to the cabin to relax for a few days, and I can't think of a better place to convalesce. My friends Sherri and Daphne will be up there to take care of me and keep me company, so Jim can go off on the quad for some time on his own. He really needs some down time too, as he feels so helpless watching me go through all this. He's been there for me every step of the way, but it's really stressful for him.

I should have the results by early next week, a follow-up appointment with the surgeon in 2 weeks, and an appontment with the oncologist on June 1. Hopefully, the results will be negative, but I'm prepared for anything. I'm still feeling very positive and upbeat. This post-op is a piece of cake compared to the leg surgery, so I'll be jumping over the moon in no time. I'll be in touch in another couple of weeks.

Hugs,
Sharyn

Sent: Saturday, May 27, 2006 10:52 AM
Subject: Results
Hi everyone,
I'm in Grand Bank at my sister-in-law's, and Jim and Jim (husband and brother-in-law) are busy dismantling the kitchen. I was at the cabin before that, so this is the first chance I've had to get to a computer. I just wanted to let you all know that I got the results of my sentinel lymph node biopsy -- NEGATIVE!!!! YEEEHAAAAW!!!!
I have to see the surgeon this Wed, and the oncologist on Thurs. I expect he will stage my cancer according to these results (I'm expecting stage 2), and prescribe treatment (I'm expecting radiation). I will also ask for a referral for a PET scan in Montreal. I have a follow-up CT scan scheduled for June 8, and a bone scan July 13, both of which I'm hoping will also be negative. After all, I'm on a roll, so why stop now?
I'll be in touch when I know more.
Hugs to everyone!
Sharyn

Sent: June 6, 2006

Subject: June 6 update

Hi everyone,
Yesterday I saw a radiation/melanoma specialist at the Cancer Centre, Dr. Hong. I don't know why they didn't send me to him in the first place, as he had a lot more expertise and a lot more answers than the regular oncologist. It certainly would have saved me a lot of grief! Anyway.... First of all, he retraced my medical history and cancer developments in great detail, and did a complete skin examination. Based on the precise description I gave him of the appearance and development of the tumor on my leg and the nearby satellite lesions, he is convinced that the first tumor was the primary site, and the lesions were secondary. Based on the fabulous job Dr. Pace did on my leg surgery in excising all the residual cancer cells, and based on all the negative results in subsequent scans, tests and biopsies, he sees no need for any treatment, not even radiation. He also said chances of recurrence are very low. (They will never say never.) So that's quite a relief.

In the meantime, as a result of my leg surgery and sentinel lymph node biopsy, I have developed a condition called "Secondary Lymphedema". This is a swelling in my lower leg and foot because my lymphatic system has been interrupted. Lymph vessels have been severed and nodes have been removed or damaged, so the fluids that are normally carried to be filtered by the lymphatic system can't make it to their destination, so they get left behind, causing swelling. This is not curable, but it can be controlled, so I have a list of self-care procedures that I have to do every day, and I have also been booked to see a lymphedema message therapist today. Compared to my Mar. 21 diagnosis, this is a walk in the park. It is not painful at all, but it can worsen and become quite painful if it is not treated as soon as possible.

So that's it for now. CT scan this Thursday, and bone scan July 13. I'll be in touch again after I get those results.

Hugs,
Sharyn

Sent: Thursday, July 20, 2006

Subject: Update
Hi everyone,
It's been a long time since I've updated you on my progress, but to be truthful, there really hasn't been anything new to report. However I did have an appointment at the Cancer Centre today and got the results of a few tests, so I thought I'd share that with you.

My second CT scan was negative again. There are a couple of lesions on my liver which were detected in the first CT scan in March, but since they have remained unchanged over a 3-month period, the report states that this is a strong indication that they are benign cysts. Also detected were uterine fibroids, which I've known about for a long time, but they are sending me for another ultrasound on Aug. 21 to get a better look at them, just to be sure.

My bone scan of July 13 was negative for cancer, but it did show some spinal osteopenia (sometimes a precursor to osteoporosis), arthritis in my lower back, and a slight fusion of the the bottom 2 vertebrae. That would explain the back pain I've been having lately. I'm mildly concerned, but at least it's not cancer. It's all relative, isn't it? I'm scheduled for a follow-up bone scan in 3 months just to be sure that this report is accurate.

I had a biopsy done by my dermatologist on July 5, but those results aren't in yet. She found a small lesion on my chest, 2 inches below my collar bone, which was probably nothing more than a zit, but she said that based on my history, she wasn't going to take any chances. Just as well, eh? Frankly, I'm not the least bit worried about it.

The lyphedema in my leg is still there, and always will be, but I am doing a pretty good job of keeping it under control. On hot days like this, I opt to not wear the compression stocking because it's too, too hot, but once the swelling goes beyond a certain degree, I have no choice but to wear it.

I asked my oncologist what stage my cancer was at, and that was the most interesting part. He said that at first, I was stage 4, which is terminal, and treatment was intended to merely prolong life. Apparently, once malignant melanoma becomes metastatic, it basically explodes in the body and spreads like wildfire, and then it's too late. However, in my case, and this is what they find so amazing, the metasteses developed at a snail's pace, and went no further than within inches of the initial tumor. Once it was all removed surgically, it was gone, and my treatment switched from "life-prolonging" to "intent to cure". Based on that and on all the negative results and the fact that the sentinel lymph node biopsy was negative, I'm now at a stage 2. Cancer usually works in progressive stages from 1 to 4, and it is very rare for it to work backwards. My case is somewhat of a phenomenon, and I think I have raised many eyebrows at the Cancer Centre. I totally defied the typical scenario. See the power of prayer? And I also think my guardian angels have been working overtime.

In light of my fabulous results, I am now being switched to the "Well and Recovery" section of the Cancer Clinic for the rest of my check-ups and monitoring, every 3 months for the next year. So unless something new develops (God forbid), I won't be sending out any more updates. Rest assured that despite all these minor problems decribed above, I am feeling great and carrying on life as usual -- including dreams and planning for the future. My next goal is to get into a rehab/post-op fitness program to regain strength, and to lose about 50 lbs. (I've put on 20 lbs since my initial dignosis! -- Talk about turning to comfort food!) I will never be able to adequately express my appreciation for the incredible support I have received from people in all facets of my life -- family, friends, students, colleagues, school parents, professional acquaintances -- EVERYONE has been so amazing!!!! You have no idea what a comfort you have all been, and how every gesture of kindness, and every e-mail and phone call worked its magic in keeping me positive and hopeful. Saying thank-you doesn't seem to cut it, but really all I can say is THANK-YOU!!! from the bottom of my heart!

Hugs to everyone!
Sharyn

Sept-Dec 2006

So after that 6-month harrowing experience, I took all these negative results, and Dr. Hong's prediction of minimal risk of recurrence as an indication of good health, and the end of my cancer days. I returned to school, and when we were all introducing ourselves to the new teachers on staff, I proudly introduced myself as a "cancer survivor". Life went on as normal at school -- Hallowen was wild, November reports were stressful, and the Christmas concert was way too much work (although it was worth it -- they were all sooo sweet!), but I took it all in stride. If things had worked out differently, I could be in a much worse place right now. I'll take the school stress any day, thank-you very much! The October CT scan, bone scan, and dermatologist check-up all yeilded negative results, so things were looking really good.

On November 3, 2007, Taylor Ann Harding-Piercy was born at 10:20 am. Mark had called at 6:00 am to say that Crystal's water had broke, and she was now in labour. By 8:00, no change. I went to school, and told Gloria, my principal, that I would have my cell phone on in class. No problem. At 9:15, Michael called to say that the contractions were getting closer. At 10:10, he called again to say she was fully dialated. At 10:30, he called to say that it was a girl! I was thrilled, and my kindergartens celebrated with me. After school, Jim and I went to visit Mom, Dad, and babe. I can't even describe the joy I felt holding her for the first time! Here I was facing death a few months ago, and here I was now holding a new life in my arms. We only stayed for a half hour, realizing Mom and baby needed plenty of rest. So we went on up to the cabin for the weekend.

On November 10, Taylor spent her first weekend at Nan and Pop's cabin. We were so proud to show her off to allof our friends up in the country. They have all come to know and love Mark and Crystal because they spend so much time up with us, so they were just as delighted as we were to have Taylor inducted in to country life.

Getting ready for Christmas at home was equally stressful, but enjoyable. Funny how having had cancer can put a fun spin on even the most hectic, chaotic events in life! I was going to enjoy this Christmas, especially with Taylor. Babies always make Christmas so much brighter!

December 28, 2006

Today I noticed a lump right on the scar line of my WLE. I had a hemotoma there for a long while, and it could possibly be remanats of that, but I was sure that had all dissipated a long time ago. Maybe I was mistaken. Better get it checked, but I'll have to wait until after the holidays. It's probably nothing, so I'm not going to let it spoil my New Years celebrations up in the country. I won't be sad kissing this year good-bye.

January 3, 2007

CT scan today. Crappy timing, as it's the first day back to school, and I'd rather be back with the kids. I miss them, and I always love hearing about their Christmas. But I sent a note home to the parents before Christmas to hold off on the Show-andTell until Thursday, so I won't miss the fun.

January 9, 2007

I went to see Dr. Pace today to show him the lump I found on my leg over Christmas. He figures it's just a build-up of scar tissue, but he wants to biopsy it anyway, just to be sure. He offered to do it then and there, but told me he'd be able to do a more thorough job in day surgery, so I opted for the latter. My appointment is for Thursday, Jan 25.

Sent: Thursday, January 25, 2007

Subject: Another battle scar

Hi everyone!
Well, it's all over, and as surgeries go, this one was the easiest one I've had so far. Maybe I'm just getting used to it and know what to expect, but the surgeon, nurses and I were all gabbing the whole time. Very non-stressful. The incision is a bit less than 2 inches long, only 4 surface stitches (more dissolvable ones underneath) and it's along the same scar line as my first surgery last year. Therefore, I'm going to have a bit more stretching to do to straighten my leg, but nothing nearly as intense as last year. He has me off "until further notice", but I have to go back and see him in 2 weeks, when I will get the lab report, and he'll see how I'm doing with straightening my leg. Hopefully I'll be able to stretch it out on my own, and I won't need physio. For the moment I'm feeling #1, but once the anesthetic wears off, I won't be so chipper. But don't worry, I have a huge bottle of pain killers waiting for me. So I'm off until at least Feb 9th, but you know me -- I'll be up around school before then. In the meantime, the kids are in good hands with Mr. Howell, and we are in contact daily.
Take care, and keep in touch,
Sharyn

Friday, February 9, 2007

I saw Dr. Pace today to get the results of my WLE. He said "Well, it's melanoma." I said, "See? I knew it. Oh well, at least it's gone now." "No" he said, "The margins are still positive, so we'll have to do another WLE". That ticked me off, because this was like last year all over again. Oh well, I came through it last year, so I'll come through it again this year. Knowing what I have to go through has it's pros and cons. It's good that I'm not as shocked and scared, but the pain and suffering is not something I'm lookinf forward to.

Subject: Bad results

Hi everyone,
I got the results of my Jan 25 surgery back today, and it’s not good. It was positive for cancer – malignant melanoma again – and there’s still more there, so I have to go in for another bigger surgery next Thursday, Feb 15, to remove the rest of the cancer cells. This is a repeat of last year, so I know first hand that the recovery will be long, and I will need physio to stretch and straighten my leg. I will also have to have radiation therapy, and there has been some discussion about a new treatment of localized chemo, where they inject the chemo down into the leg through the lymph nodes in the groin. I’m not as devastated as I was last year, but the thought of having to go through all that surgery and recuperation again is not a happy one. What really upsets me is that I had wanted radiation last year, and tried to insist on it, but they assured me that I had such a low risk of recurrence, that it wasn’t warranted. Now I’m being told that if I had had radiation last year, this probably wouldn’t be happening now. I think that’s the hardest part of all. Also, the fact that I’ve had a recurrence so soon is not a good sign. But Jim (my husband) thinks it’s possible this is not a recurrence, but leftovers from what I had last year. I’ll have to ask about that when I go back to the Cancer Centre.

In any case, I doubt I will be back to school for quite awhile. I’ll be off until Easter for sure, and possibly until the end of the year. You have no idea how badly I feel about that, as I was really looking forward to returning next week. I miss the kids, I miss being in school with my friends and colleagues, I miss being busy. I will definitely keep in touch as news develops over the next few months.

Sharyn

Saturday, February 10, 2007

Late last night, just before bedtime, I discovered to my horror another tumour on the tendon, about 2 inches above the WLE site. Okay, This is not fun anymore!!!! I waited for 10:00 am to roll around, and I called my sister Carol to see if she could get Dr. Pace's phone number from her mother-in-law. Soon after, Dr. Pace called me, and I told him about the new tumour. He said that wasn't good, and to come see him in Clinic on Tuesday morning. An hour later, Ricky called from Thunder Bay. I tried to seem calm, but I told him about the new tumour. After he hung up, I broke down and cried like a baby. This melanoma is getting out of control, and I've got to do something pro-active. Time for me to take matters into my own hands! I need to learn more about this! If I had known more last year, I would have fought hard for radiation. But no, I trusted their judgment. This time I'M gonna be the one with all the answers. I'm gonna tell them what I want, and what treatment I need. It's time for some major research!

Sent: Saturday, February 10, 2007 4:16 PM
Subject: Update and request
Dear friends,
It pains me to report that I have discovered yet another tumor 2 inches away from the original site, which has grave implications on my already poor prognosis. I have spoken to my surgeon, and I have to go for an emergency biopsy on Tuesday. My day surgery for Thursday has been upgraded to major invasive surgery under general anesthetic with possible hospitalization, and will be done on Friday. I have asked to have another lymph node biopsy done at the same time, but that will be decided later this week.

I know many people are hoping and prayng for me, and if ever I needed prayers, I need them now. Everyone's care and concern has been overwhelming. However, I do have one request. My family and I are having a hard time coming to terms with this sudden turn for the worse, so I respectfully ask that you not call me. My family finds it very stressful hearing me repeating over and over in phone conversations the details of my situation. Also, (and I don't know how to say this without sounding presumtuous) please don't send flowers. As much as I love flowers, having them around now is just another reminder of what we're all going through. Do keep praying, and do keep sending emails, but please understand if I don't respond. I'm so sorry to have to shut you out like this, but I really need my space alone with my family to deal with this. I promise, I will keep in touch via email as new developments, good or bad, arise.
Thank-you for understanding,
Sharyn

Sent: Wednesday, February 14, 2007 10:31 AM
Subject: The latest
Hi everyone
Yeah, this really is a big kick in the teeth, just when I thought I had it licked. But I guess with cancer, you never know when it's gonna strike back. I wasn't so upset on Friday when he told me that the lump right on my old scar was positive. I half expected it would be. So at that point, it was just a repeat of last year, which I could deal with, but certainly wasn't looking forward to. It was the discovery of a new lump 2 inches above the old one that put me over the edge. To say I was devastated would be an understatement.

I had that new lump removed yesterday, as well as another tiny possible tumour. Just by eyeballing them in the clinic, Dr. Pace (surgeon) saw nothing concerning about the tiny one, but the bigger one was definitely melanoma. Strangely enough, rather than being upset, I was relieved in a weird way. I think it was because at least now I know what we're dealing with, so we can do something about it.

So here is where things stand now. Dr. Pace is meeting with Dr. Rorke (oncologist) today, and he is going to tell him about this new tumour. Based on the fact that it has not only recurred, but that it is now in-transit in a vertical growth phase, he is going to recommend that I get a PET scan done to ensure the cancer is still localised, and if it is, send me for an isolated limb perfusion (basically chemo only to the leg). This is only done in Calgary and Vancouver, as far as I know. As for the planned surgery tomorrow to resect the affected area, they'll decide that today and let me know. I kind of feel that they will go ahead with it, but Dr. Rorke might want to see me first, which may delay it until next week.

I have been ravenous for information, and I have spent almost every waking moment reading up on research, clinical trials, medical journals, anything I can possibly find on my type of melanoma. Of course, mine is atypical, so specific information is difficult to find, but I have learned a lot -- enough so that I can understand what they are talking about, interpret the pathology reports, and know the risks and success rates of treatment options. What really gets me is that in melanoma patients with sub-cuntaneous tumours of more than 4 cm thickness, (which I had), recurrence is pretty much guaranteed. Yet, they talked me out of a PET scan last year, and denied radiation -- the very 2 things I was begging for, and the very 2 things that probably could have avoided, or at least delayed, this new episode. But I wasn't knowledgeable enough to argue with them last year -- I certainly am now! Last year I trusted their judgment implicitly -- now I can engage in intelligent debate.

Anyway, I should have more information later today. Marie (my family doctor and close friend) said that at least now, they're treating this cancer with the fear and respect it demands, and they're jumping on it agressively and pro-actively. The fact that it's still relatively localised is in my favour, and as long as it hasn't gone through the lymph nodes, isolated limb perfusion is a solid option. My last CT scan was Jan 3, and nothing showed up on that, and my lymph node regions aren't swollen, so I've got my fingers crossed.

So now you're all up to date. I'll be in touch.
Hugs and kisses
Sharyn

By the way, Happy Valentine's day! XXOO

Wednesday, February 14, 2007

Hi all,
Surgery will go ahead as planned tomorrow at 10:30. This is good news, because at least al the margins will be cleared, and that will be one mass of cancer cells that I won't have to worry about anymore. On March 5, I will get the results of this surgery and find out the next step regarding treatment. I expect to be laid up for at least a week or so. Keep praying and sending those positive vibes -- I'm feeling them.
Hugs
Sharyn

Sent: Thursday, February 15, 2007 12:36 PM
Subject: No surgery today
Hi everyone,
Well, after all the anticipation, I didn't have my surgery today. I went in to the hospital, registered at Day Surgery, was called in, and then met with Dr. Pace, the surgeon. Apparently, there was a miscommunication between him and Dr. Rorke, the oncologist. It was decided at their meeting yesterday that Dr. Pace would do a substantial vertical incision, and remove as much deep (sub-cutaneous) tissue as possible. The cancerous cells are not in the epidermis (outer skin), so I guess the operation will be similar to scooping out a melon -- removing the inside, and leaving the epidermis intact. In order to do that, I have to be asleep, and today was Dr. Pace's time for day surgery, where only local anesthetic is administered. Therefore, I have to wait for the next available appointment in the main OR. I'm assuming Dr.Rorke thought Dr. Pace was in the main OR today, which is why I got a call from the Cancer Centre yesterday confirming my surgery for today.

Other decisions made were that once I am healed from the surgery, they will begin radiation treatment, and send me away for a PET scan, but I don't know which will come first. As for the isolated limb perfusion, the radiation specialist feels that radiation would be just as effective, but I'm going to investigate that further. Time for more research...

So that's it. More waiting.
Hugs
Sharyn

Wed, February 21, 2007

Hi everyone,
Just a quick note to let you know that my surgery will be going ahead on Friday, Feb 23 at 1:00 pm. Apparently I won't be hospitalized overnight, which surprises me, so I should be back home by early Friday evening. I am anticipating (but not looking forward to) a long and painful recovery, because this surgery will be a lot more invasive than the one I had last year, and I know how hard that one was. I'm relieved that the waiting for this step is over, but I am honestly anxious and scared. After all, who likes surgery? But on the other hand, who likes cancer? This is simply a necessary evil I have to endure if I'm going to have any chance at fighting this, and at this point, the window of opportunity for a curative treatment is closing fast, so time is of the essence. Do keep praying, and say a prayer also for Dr. Pace, that he will be guided to find every one of those microscopic cells, and cut them out dead in their tracks. I'll be in touch a few days after surgery,as soon as I'm able to sit up and type on my laptop. Thank you all for your support, prayers, good wishes, and positive energy vibes. You have no idea how much I appreciate it.
Hugs,
Sharyn

Subject: I'm home!
Hi everyone,
It's Wednesday, Feb 28, and I'm finally home from the hospital. My surgery went well, but it was WAAAAY more extensive than expected. Dr. Pace had originally planned to send me home Friday night after the surgery, and I ended up staying in hospital for 5 more days. The incision has 4 parts to it -- one vertical and three horizontal -- and covers an area of about 6x6 inches, with 30-40 stitches. All the subcutaneous tissue has been removed right down to the bone, so my leg has a concave shape. No more mini-skirts for me! A lot of the nerves have either been removed or severed, so the inside part of my leg is numb from the knee down to my ankle. The beauty of that is that I can't feel any pain. Some of the nerve damage will be permanent, but some of the distant nerves are coming back to life, though, and as they do, I feel the discomfort, but it's not unmanageable.

Dr. Pace has decided to send me to Halifax to see a melanoma specialist. That will happen after I get my stitches out on March 9. Then I will go to either Sherbrooke or Edmonton for a PET scan to see if the cancer has spread to any other part of my body. They need to know that before they can decide on the appropriate post-op treatment. In any case, all this will happen fairly quickly within the next few weeks, because ideally, treatment should begin about a month after surgery.

My sick leave will run out in mid-May, so I am applying for long-term disability. I definitely will not be back to school this year, and quite possibly, not next year either. It all depends on how all this pans out, and how well I learn to properly walk again. One thing is for sure, I have a long road of recovery ahead of me.

I'll be in touch as I learn more.
Hugs
Sharyn

Sent: Tuesday, March 6, 2007

Subject: Nothing new
Hi everyone,
I went to see Dr. Pace this morning. He is highly pleased with how my incisions are healing, but he has decided to leave the stitches in for at least another week. He has been in contact with the Melanoma specialist in Halifax, who concurs that everything Dr. Pace has done to date has been appropriate. He also feels that radiation is not the best treatment at this point, given the wide range of cancer spread in my leg. (I agree. Had radiation been done last year, it likely would have been effective, but now, it's too late for radiation to make any difference, as the cancer has spread to too wide an area.) He is leaning more towards an isolated limb perfusion, but he will be more definitive once he sees me. The specialist's secretary is making arrangements for my PET scan in Sherbrooke, after which I will go to Halifax to meet with the specialist, all in one trip hopefully. I am assuming that the results of the PET scan will better determine my treatment. If the cancer is still locoregional (only in my leg), curative treatment is still possible, so I am feeling quite positive and hopeful. If it has metastasized to other parts, (which seems unlikely right now), systemic chemotherapy would be the next step as a palliative (life-prolonging) treatment.
So that's it for now. I'll be in touch again after my next appointment with Dr. Pace Tues, March 13. Keep up the prayers!
Hugs
Sharyn

Subject: March 13 update

Hi everyone,
I went to see Dr. Pace today, and I got my stitches out. The results of my surgery showed negative in 3 of the 4 margins. That's the good news. The positive margin is the top one (above the bend behind my knee), indicating the cancer is spreading up my leg, and it wasn't completely removed. It is also positive for lymphovascular and perineural (nerve) invasion. This doesn't necessarily mean that it has reached my lymph nodes, but it is definitely a precursor to nodal involvement, and it puts me at an extremely high risk for quick spread to other parts of my body. Dr. Pace feels that this part of my leg cannot withstand another operation, and that the only recourse now is an isolated limb perfusion (basically high density chemo to the leg only). That would be done in Halifax by the melanoma specialist, Dr. Carman Giacamantonio. But first I need a PET scan (in Sherbrooke , Quebec ), and I will hopefully find out when that will be on Thursday when I go to the Cancer Centre. If the PET scan shows any spread to other parts, then an isolated limb perfusion is futile, and will not be done. But if the PET scan is negative (other than my leg), I stand a good chance of survival with the isolated limb perfusion. This is the only hope I have of catching this, and quite frankly, I am quickly running out of time. I'll send another update on Thursday evening after I see Dr. Rorke.
Keep praying
Sharyn

Sent: Thursday, March 15, 2007 8:49 PM
Subject: March 15 update
Hi everyone,
I went to see Dr. Rorke at the Cancer Centre today, and it looks like my PET scan will be within the next week or so, and will most likely be in Edmonton. Based on previous tests and CTs, he said he would be shocked if anything (other than in my leg) showed up on the PET scan, and he is expecting it to be "as clean as a whistle". The results will be sent to him within a few days afterwards, and then I'll go see Dr. Giacomantonio in Halifax for the isolated limb perfusion. I'm feeling pretty optimistic about everything now. I'll be in touch.
Hugs
Sharyn

Sent: Saturday, March 24, 2007 12:21 AM
Subject: Off to Edmonton
Hi all!
I got a call this evening from Edmonton, and my appointment is this Tuesday, March 27 at 1:30 pm. It's been a pretty hectic evening, trying to book a flight and hotels. It's spring break in Edmonton, so just about every hotel was booked, but by 10:30m this evening, all arrangements were finalized. We'll be leaving Saturday afternoon at 5:30, and returning on Wednesday, Mar. 28. We won't be stopping off in Halifax on the way back, because we can't make an appointment, being the weekend and all. So we'll just come on home from Edmonton, and make another trip to Halifax once we have the results of the PET scan and an appointment arranged. We have a lot to do tomorrow, so I won't have time to call anyone. I hope you understand.
Pray for negative results!
Hugs
Sharyn

Sent: Thursday, March 29, 2007 6:35 PM
Subject: PET scan results
Hi everyone,
I had my PET scan on Tues, got home Wed, and got my results today (Thurs). There was no spread to anywhere else other than my right leg. That's wonderful news!!! As expected, it showed a large affected area around my right knee, but it also detected another spot about 10 cm above it. We didn't know about that one, so now we have to consider another surgery before proceeding with the isolated limb perfusion. Dr. Rorke is trying his best to schedule me for an MRI to determine the exact location of this new tumor so that Dr. Pace can hopefully remove it totally. I have an appointment for Halifax on Apr. 23, but they will try to move it up if a sooner opening comes available. This is the best case scenario under the circumstances, and as a result, there is still hope for a curative treatment. I'll update again later.
Hugs
Sharyn

Monday, April 2, 2007

Subject: What's goin' on
Hi Ladies,
I'm not sending this to my general mailing list -- just to you. I just wanted to bring you up to date on what's been happening. My MRI is scheduled for Thurs, Apr. 5. My incision burst open this morning. There is a weak spot in the surgical site that Dr. Pace thought may need a skin graft, but he wanted to give it a chance to heal on its own first. Well, it didn't heal, and it finally gave way, so now I have a gaping 3 cm hole in my leg. Although it sounds gross, it was really amazing in a weird way. My leg has been soooo swollen lately, but when the site ruptured, all the clear fluid that had built up in my leg gushed out, and my leg actually deflated like a balloon. Up side? No more swelling. I've called Dr. Pace to see what to do, and he's still in surgery as I'm writing this, but I've left a message for him to call me. I've also called Dr. Giacomantonio in Halifax to tell him about this, as well as the results of my PET scan (particularly the new mass that they picked up on), and his secretary is trying to get me in sooner than the 23rd, and she'll call me back later today. I'll let you know how things turn out.
Hugs
Sharyn

Subject: Back to hospital

Hi everyone,
Yesterday (Monday) I had a slight setback. A weak spot in my incision site burst open, leaving a gaping hole in my leg, about the size of a loonie.

I went to see Dr. Pace this morning about it, and he referred me to a plastic surgeon right away, Dr. Fitzpatrick, who I saw this afternoon. Dr. F. didn't think a skin graft would do the trick, but he said it would take forever for this to heal on its own because of the immense amount of constant fluid build-up. Since getting the isolated limb perfusion done as soon as possible is so important, he decided to admit me in hospital for a few days to hook me up to a vac system. Essentially, what that does is it suctions out all the excess fluid so the wound can heal faster. It's the fastest healing procedure available. However, I can't be admitted right away because there are no beds available, so they told me to expect a call tomorrow. In the meantime, the Community Health nurse will tend to my bandages to prevent infection.

I feel pretty good about this decision, as I'm not sick, and I won't be in any pain. I'll just be taking it easy, reading, watching TV, gabbing on the phone, and having my meals served to me. Actually, it's no different than being home! But the main thing is, the healing will be a lot quicker so we can get on with the battle. I just hope I'm discharged in time for Easter Sunday dinner at Mom and Dad's.

Hugs
Sharyn

Sent: Thursday, April 05, 2007 3:51 PM
Subject: Hospital
Got the call to go in to hospital this afternoon (Thurs). Hoping to be out by Easter Suday, or at least to get a pass for a few hours so I can go to mom's for Easter Sunday dinner. I'll be back online when I get home. Call Jim at home 364-6955, or on his cell 685-5074, to find out what room I'm in if you feel like dropping by.
Hugs
Sharyn

Sent: Thursday, April 19, 2007 10:06 PM
Subject: Next step
Hi everyone,
I haven't written in awhile because I was in hospital from April 5-16 -- BORING!!!!! But I'm home now, and Community Health has started a pilot project with the VAC machine out in the community as part of home care, and I'm their first patient. So I have a neat little VAC attached to me, no bigger than a small purse, so I can go on about life as normal....That is, if you call walking around with a machine and medical tubing wrapped around you normal. The "hole" in my leg is healing up quite nicely, and I'd say it will be totally healed in another week or so. I'm also walking a lot better -- no cane!

Jim and I leave for Halifax at 7:15 Saturday morning. We'll spend the weekend with Jim's cousin Jeanne and hubby John at their country home, and then I go see Dr. Giacomantonio on Monday at 3:45. It's just a consultation appointment for now, but my future treatment (hopefully the isolated limb perfusion) and essentially my fate will be decided then. I am hoping my leg will pass the "healed enough" test so that we can schedule an ILP by mid-May.

Some of you may already know this, but my school held a fundraiser for me on April 4, and raised and incredible $3,500!!!!!! It was presented to me just before I went in to hospital, and for once in my life, I was totally speechless! And of course, I cried -- a lot!!! I will send a formal thank-you to all the teachers, students and parents very soon. I was absolutely humbled by such unbelievable support!!!! And it will certainly help with all the travel expenses!

Anyway, I'll be in touch again when I get back from Halifax. Keep your fingers crossed and the prayers coming.

Hugs
Sharyn

Subject: What happened in Halifax
Hi everyone,
Well, I'm back from Halifax, and here is the result of my appontment with Dr. Giacomantonio (really nice guy, knows his stuff!!!!) I have a lot of microscopic cancer cells in my leg, but I also have numerous tumours (macroscopic cells) deep below the skin. There is even one on the tendon behind my knee. The tumours are aggressive, and developing fast, but everything is still around the back of the knee and lower back thigh. Some lymph nodes near the knee are affected, but none in the groin area, which is the main nodal basin for the leg. That's a good thing.

In about 4 weeks (late May) I will return to Halifax for a massive, and I mean HUGE, operation. I don't know the exact date yet. First off, I will have an isolated limb perfusion done, which I expected. That will take care of the microscopic cells, but the tumours have to be dealt with surgically. Once the ILP is done, and while I'm still under anesthetic, Dr. G. will re-open the back of my leg, remove all the tumours, and operate on the tendon with the tumour and reattach the tendon. He won't be able to close the surgical site for 2 reasons: 1. there won't be enough skin left to close it, and 2. he has to wait until the residual chemo from the ILP has worked its way out of my body. So he will just pack it for a few days while I'm in ICU. Then, on about day 3 or 4, he will do another surgery to do a flap -- similar to a skin graft -- by taking a chunk of skin and muscle from my inside upper thigh and putting it over the surgical site behind my knee. Then the recovery starts.

He estimates I will be in ICU for several days, and in hospital in Halifax for anywhere between 2-6 weeks, depending on how well I heal, how I'm dealing with the pain, how I'm learning to walk again, and whether or not I develop any infections. Once I'm ready to come home, he wants me to start a one-year regimen of Interferon-alpha. Interferon is an antibody that we all have, whose job it is to recognize and attack foreign substances in the body (especially cancer cells). For some reason, these types of cancer cells have managed to trick my interferon into thinking they are harmless. So interferon treatment will boost my own interferon (and ultimately my immune system), and hopefully fight any other microscopic cells that may have escaped into the rest of my body, but are too small yet to be detected by any kind of scan (PET, CT, or MRI).

The success rate of this treatment ensures 80% no recurrence for at least 2 years. Each year after that, the likelihood of recurrence grows, but if I can get to 10 years with no recurrence, it will be assumed that I have beaten this once and for all. So now, I'm looking forward to my 60th birthday! What a celebration that will be!!!!

Jim has a lot of time saved up, so he will be able to take paid leave to come to Halifax wilth me. I will admit, I'm scared, but it's a necessary evil if I'm going to fight this with any degree of success. I still haven't lost my positive attitude, and I know my angels are keeping watch over me. When I'm in hospital, I know every day will be better than the day before, so that will motivate me to get better quickly. Plus, I don't want to miss what little summer we do get!!!

In the meantime, I'm still attached to a VAC machine, and will be for at least another 3 weeks. But that's not keeping me down. I'm up and about everyday, so don't be surprised if you run into me anywhere at all! So for the next month, I won't have any more news, except the date of my Halifax surgery.

Keep up the prayers.
Hugs
Sharyn

Sent: Tuesday, May 15, 2007

Subject: Fwd: I'm off the VAC!!!!

Hi everyone,
I went to see Dr. Pace today, and he was very impressed with how my leg is healing, and decided the VAC has fulfilled its role, and that my leg can finish healing on its own. SO.... No more VAC!!! I'm a free woman! Off my leash! Oh, the simple pleasures of life!!!! No more weird stares at all that medical tubing; no more staying plugged in for hours on end; no more extra weight on my shoulder carting that thing around. I'm FREE!!!!

Now we're ready for Halifax . I phoned Dr. Giacomantonio today to let him know I'm ready to roll for the Isolated Limb Perfusion and the surgery, so I should get a date real soon. I'll let you all know when I hear. In the meantime, I'm off to the cabin for the May 24th weekend with "no strings attached".

Hugs
Sharyn

Subject: Halifax is a way off yet
Hi everyone,
I was just talking to Dr. Giacomantonio's secretary, and she told me that she is working on a tentative date of June 19 (!!!!) for my surgery and ILP. She's still waiting to hear back from some of the ILP team members, and if they can't do it on June 19, God only knows when it will be! I'm really agitated about this. Cancer cells can do a lot of travelling in 5 weeks, and I'm worried that my PET scan from March will no longer be current, and some of those microscopic buggers will have escaped from my leg. Maybe I'm just being paranoid, and it won't make a bit of difference. I was hoping I would have been up and back and recuperating by mid June. But now it looks like I'm gonna miss the whole damn summer! I may even miss the 50th celebration planned with "da girls" at Woody Island! I'm really bummed out right now. All this waiting! It's killing me -- literally!!!
I'll keep you all posted
Sharyn

PS - Jessie, honey, don't change your plane ticket. You'll be home from Quebec long before I even leave for Halifax.

Sent: Tuesday, May 22, 2007 4:51 PM
Subject: All set for Halifax
Well, it's now official! I will be admitted to the Victoria General Hospital in Halifax at 11:00 on June 18 to have all my pre-op tests and an MRI done. Then the ILP and surgery will be June 19, and all hell will break loose after that... ICU for a week, more sugery on the 22nd, and then a veerrrry looonng recovery. I'm certainly not looking forward to it, but it's a necessary evil if I'm going to beat this beast of a cancer.

For now, I have developed another huge infection in my leg. My groin swelled up over the long weekend and I thought the cancer had spread to my lymph nodes-- ruined my May 24 holiday -- but apparently the swelling is just part of the infection, and should ease off with the antibiotics. In the meantime, it's pretty painful. I have also developed a terrible cough -- Dr. Marie thinks it might be reactive airway disease -- so she sent me for a chest x-ray and put me on a puffer and nasal steroids. Maybe it's a good thing my surgery is not until June -- I'm gonna need that much time to get healthy again!

That's it for now.
Hugs
Sharyn

Wednesday, May 30, 2007

What a week! But I'm okay now.

Thursday, May 17, 2007

Time to start documenting

Living with melanoma

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