Saturday, August 25, 2007

Isolated Limb Perfusion in Halifax

It's now been over 2 months since my treatment in Halifax, so I think it's time to document my experience.

Monday, June 18, 2007
Today I was admitted to the Victoria General Hospital in Halifax. I had an MRI, EKG, chest x-ray, blood work, an IV line inserted, and conferences with the nurse, intern, resident, and anesthesiologist. My operation will start at 7:30 tomorrow morning, and will last all day and well into the evening. First they will make an incision in my groin area to locate the main artery for the perfusion, but on the way, they will biopsy a couple of lymph nodes just to make sure there is no cancer. Then they will do the perfusion. Once that’s over, they have to reconnect my artery, and close the wound. Then they will do a huge excision on my leg to remove the tumors. I haven’t heard the results of my MRI, so I have no idea how many tumors there are -- hopefully a lot less than they expected. There’s one that seems to be on the tendon behind my knee, and if so, they have to detach my tendon, remove the tumor, and reattach the tendon. I’m hoping it’s not right on the tendon, but really close to it, so that they don’t have to touch the tendon at all. The excision wound will be left open until most of the chemo works its way out of my system, and then on Friday, they will do a flap taken from my upper thigh. I’m feeling really anxious about all this. I’m not worried that things may go wrong and I’ll die. I know I’m in good hands with Dr. Giacomantonio. I’m scared of the pain that I’ll be in when I come to tomorrow evening.


It was so very hard saying goodbye to Jim tonight. The reality of all this is smacking me in the face, and as much as I’m trying to be brave, I’m absolutely terrified. I’m afraid of the long recovery; I’m afraid of how my leg will be after all this; I’m afraid that they will discover the cancer has advanced and all of this will have been for nothing. I’m also scared of being alone. I know I have lots of family and friends who love me and who are praying for me, but from the moment I say goodbye to Jim at the elevator tomorrow morning, to the time I regain consciousness, I will be alone. I wish Jim could stay with me at least until they put me to sleep, but he can’t. That will be the hardest part emotionally. The aftermath will be the hardest part physically, but at least Jim will be with me.

I feel so sorry about all this. We had gone through so much raising the 6 kids, sacrificing everything for them. Now was supposed to be our pay off time, but instead, cancer has turned it into our rip-off time. I feel like we’ve been cheated out of an easy sail into our retirement years. Now, I don’t even know if we’ll ever get to retire. We love each other so much, and damn it, we’ve earned our golden years. Even if I do survive all this and live for many years to come, I feel like we’ll forever be walking on egg shells, waiting for the other shoe to drop, wondering if the cancer will ever recur. We’ll have a black cloud over our entire future, threatening to steal time away from us.

It’s 12:30 am, and I have to try to sleep. My guts are churning. I can’t concentrate on either a computer game or a DVD. I feel like my heart is racing. I’ve asked my nurse for an Ativan to help me sleep. My IV is pumping saline into my body, and my hand hurts from the IV line. I’m half afraid to go to sleep because once I doze off, time will pass quickly, and before I know it, I’ll be on my way to the OR. I really don’t want to go, but I have to. I have to put up the fight of my life for my life, and win against this beast of a disease. Everyone has admired my courage, my positive attitude. They’d change their minds if they could see me now. I just wish Jim were here to hold me…hold me tight and never let me go.


Tuesday, June 19, 2007
This morning, they came for me at 7:00 am for surgery, had me on the stretcher, then got word that the anesthesiologist would be delayed, so they put me back in bed until 9:00 am. The extra 2 hours of waiting was a real pain – more time to worry and get anxious. Jim was allowed to come in the elevator with me, and as far as the OR door. Once inside, I kept reminding the anesthesiologist to give me LOTS of anti-nausea medication, ‘cause I hate post-op nausea! (Really, who in their right mind likes it???) I also asked to speak with Dr. Giacomantonio before they put me under. I told him that since I had seen him in April, my tumours seemed to have either shrunken or disappeared. I asked if it was possible my auto-immune system had finally kicked in. He said it was possible, but he wasn’t going to take any chances. Fair enough! Then they put me to sleep.

When I came to, I was really groggy, and hugely SICK!!! Between hurls, I kept saying “This wasn’t supposed to happen!” I don’t remember much about the next 24 hours, as I was in and out of consciousness. I do remember looking at the clock (11:30), and wondering if it was day or night, and what day it even was. I do remember seeing Jim at the door of the ICU, looking in at me while the nurses took care of me. He looked so helpless! I do remember waking up and Jim stroking my face. I do remember vomiting so intensely that my stomach was completely empty, and the contents of my upper intestinal tract started coming up. YUCK!!!!

Jim said he got scared when he saw me after the operation. My whole body was swollen up, and my face was swollen beyond recognition. The cornea of my right eye somehow got scratched during surgery, so it was swollen shut, and I could barely open my left eye. I looked like a Cyclops!

Wednesday, June 20, 2007

Surprisingly enough, I was released from ICU this afternoon, and put back in a ward on the surgical floor. I was still very nauseous, and although I was put on a liquid diet, nothing tasted as it should, and anything I tried to ingest promptly came right back up. They still kept me pretty doped up, so I slept a lot. But Jim stayed with me the whole time. The following is an email he sent to friends and family:

Update Number 1
As far as we know everything went well yesterday. Sharyn was in the operating room for about 11 hours. I spoke with the doctor after the operation and he was satisfied with what he had done. The next step is the flap, which will be done early next week. For those of you who don't know, basically they have left the surgery site open and will fold down a flap of flesh from her upper leg into the surgery site. This will be done by a plastic surgery team.

Sharyn is now out of intermediate care and has been placed on the 9th floor in a ward with 3 other people. We are waiting on a private room but it doesn't look good, as there are only two on the whole floor. In any event she is in a lot of pain and is very stomach sick but she feels she is better than last night. They had to give her a blood transfusion due to low blood pressure (don't worry, this is normal). She also has an array of various tubes and such everywhere. I know that this will concern you all, but again this is normal. She is, though, in good spirits and in the hands of a great team of nurses and doctors.

I will update you all when I can. For the rest of this week I am using an internet café. Then I will have more computer access at my cousin Jeanne's home (Jeanne spent the afternoon and evening with me yesterday, which was really kind.)

Thursday, June 21, 2007

Today was more of the same, but I was able to keep down a couple of plain soda crackers and a bit of water. John (Jeanne’s husband) dropped by to see me, and I could tell by his reaction upon seeing me that I must look pretty bad. Jim told me later that all the way down in the elevator, all John kept saying was “The poor dear…the POOR DEAR!” The biggest and best change was that I got my private room back late this afternoon! I was soooo happy about that! Here’s what Jim wrote to friends and family:

Update Number 2
Yesterday ended up a little harder for Sharyn than we had hoped, but by late last night things started improving. This morning she was able to open her eyes as the swelling is really starting to go down. This swelling was caused by fluid retention. She is still having a bit of nausea, but that too has improved this morning. We had thought the nausea had been a result of the drugs used to keep her sedated, but we were told this morning it is a side effect of a small amount of chemo leakage from the limb perfusion. Last night they were also able to stop the blood transfusions; she had two units and now her blood levels are fine. Also this morning she was removed from the oxygen. While she is still on fluids, this morning she started eating a few crackers… not a big deal to you or me, but she was really enjoying them and was savouring every nibble.

Moving forward she is still scheduled for the next step of the surgery process early next week… no confirmed date but it should be done by Wednesday.


Sharyn wanted me to let you know that she is thinking of you all very much, esp. our six children, and wishes she was able to call you all herself to let you know how she is doing. With this in mind, she has also requested that you not call her right now in the hospital as she is still in the recovery process, and between the pain, nausea and trying to rest she finds it very difficult to deal with the calls. Also please do not send flowers (hospital policy), and fruit baskets right now are out as she is on a fluid diet.

I will do my best to send another email tomorrow… depends on if I can get to the Internet cafe on Spring Garden Road.


Friday, June 22, 2007

Today was a pretty good day. All I could think was that today is better than yesterday, so tomorrow should be better again. The IV has been disconnected, and I’m taking my drugs by injection. I’m still sleeping a lot, but sleeping more deeply and more comfortably. Here’s Jim’s version:

Update Number 3
Well today was a better day for Sharyn. As you know from my email yesterday, things were very difficult for her. So here's what happened yesterday.

Sharyn rested fairly comfortably for most of the day until just after supper, at which time she experienced some more nausea again. This was a result of a small bit of chemo leakage. The dressings were changed on her leg and the swelling went down a little. We have been told that her groin he is healing well (this is where they inserted the chemo for the limb perfusion). They also had to remove a couple of lymph nodes to test. The doctor who did the surgery was by, and I must say, he seemed very positive. Dr. "G" (don't have a clue how to spell his name) is amazing, and we have been told by anyone who looks at her chart that Sharyn is so lucky to have him for her doctor. The next surgery is still scheduled for early next week, and while it is of the same scope with regard to duration and recovery, she will not have to deal with the sickness from chemo.

This morning Sharyn was taken off the IV and told she could start to eat a few solid food types. This is good sign and she had quite the smile going when she was chewing her muffin. Later today they are going to clean up her neck were the tubes are inserted and give her another sponge bath. The care here is great. While the rooms are not all that good, the nurses make up for it with a very high level of care, and are always there within a minute or two if you page them.

Phone calls: Sharyn wanted me to make sure that you all understand that she just isn't up to the calls yet. In fact she hasn’t even spoken with her own children or family yet, I hope you all understand. I had an email from Kathy Hickman this morning and I have to say she had a great idea on sending the cards. I know that this would lift her spirits.

Thank you all for caring so much, I will email you all again soon.

Saturday, June 23, 2007

What a setback today!!!! In addition to all the pain I already have (groin incision, right side from manipulation during the ILP, open excision on my leg, nausea, etc), my bowels decided it was time to get moving. At the risk of sounding gross, I was backed up and plugged up from all the sedation, and to make matters worse, I wasn’t allowed to go to the bathroom due to orders for complete bed rest. They tried to get me to go in a bedpan, but there’s something in the human psyche that simply won’t allow you to “go” in a bed, not to mention the discomfort. The nurse then suggested I just do it on the sheets. Are you kidding????? No way! But the pain was getting unbearable! By the time Jim arrived at 10:30 am, I was in tears, saying I couldn’t take this anymore, it’s not worth it, let me just die now, etc. Jim gave me a figurative kick in the rear end, and said, “This is not you talking! You’ll get through this. Look how well you were yesterday…” and so on. But the pain only got worse. I was begging Claudette, my nurse, to bring me to the bathroom, but she wouldn’t defy doctor’s orders. (I don’t blame her.) She did, however, try to contact the doctor, and by lunchtime, he returned her page and said I could have a commode. Well, it wasn’t a toilet, but it was a far sight better than a bedpan! After an hour of trying, things finally “passed”. It was unbelievably painful, especially due to my groin incision, so they bumped up my painkillers, which mercifully put me to sleep. Later that night I felt better, and prayed for a better day tomorrow. Here’s Jim’s email to everyone:

Update Number 4
A little setback today… the nausea has returned after a great day yesterday. Not sure of the cause but it may be due to her return to solid foods yesterday. So for today she is hooked up to an IV again and is not feeling the best. Sharyn was really distressed over this, as she figured she was over that stage of the healing process.

You may be unaware that Sharyn's family is coming to visit her. This all starts on Wednesday with her Mom and Doreen arriving. Later on, her sister Carol will be arriving… unsure of the date, but I think it overlaps with when Doreen goes back to NL. And sometime in early July, Julie, her daughter, will try and get here. Ricky is planning on coming to NL in August to spend time with his Mom, while Jess will be holding the fort for us in Mt. Pearl and looking for a job (if anyone can give her any leads it would be great). Due to work issues Matt must stay in Montreal and Mark is in Alberta trying to jump-start his family’s finances, which leaves Mike at home to pick up the dog sh*t (which he'd better be doing).

To Uncle Frank and family: thank you very much for your kind gesture. While you brought tears to Sharyn’s eyes, they were tears of happiness. On a personal note, I have always enjoyed the company of your family, and anytime I see a fridge with a dent in it, I think of the story Frank told me "Jim, see that dent? That could have been Ralph’s head." Thanks again from the two of us. Gail or Ralph, please make sure all of your family receives this.

Anyway, not a lot more to say. The plastics guy should be in on Monday and we should have more information for everyone then.

Sunday, June 24, 2007

Today was another good day, thank God, so I’m feeling more optimistic. Nothing really outstanding happened today, except one funny incident. My supper tray came, and Jim lifted the cover to see what it was. “Looks like ham,” he said, and started to cut it up for me. (believe it or not, I’m still too weak to even do that much for myself!) I tasted it and said “It’s not ham, it’s turkey.” We then engaged in a friendly argument back and forth – ham, turkey, ham, turkey – until Jim picked up the menu card. He laughed as he read it. “We’re both wrong! It’s pork!” That doesn’t say much for hospital food, does it? Maybe my taste buds are working fine after all – it’s the food, not me!

Monday, June 25, 2007
I was feeling really well today. We had a false alarm early this morning. The surgical team came by at 6:45 am and said I would be having my skin graft done today. I called Jim immediately to get him to come in with me, but by the time he arrived, the doctors had come back and told me there was no time in the plastic surgery’s OR schedule until Friday. Poor Jim! He arrived in a panic after facing Halifax rush hour traffic, but there was to be no surgery. The nurses were tending to me, so he went to the Internet café to send an email:

Update # 5
Lets cut right to the chase......Sharyn is feeling very well this morning. In fact, when I left to come to the Internet café, she was waiting to get her hair done. Might be an idea to try some Demerol before your next hair appointment...works for Sharyn.

Some of you may already know that her surgery is now scheduled for this Friday, which is good in the eyes of Sharyn and the medical team, as it will give her a chance to gain some more strength. Early this morning (6:45 am) Sharyn gave me a call to come to the hospital as it looked like the surgery would go ahead, and she wanted me there ASAP. Well I got ready, only to face the Halifax rush hour. Don't forget, we live in Mt. Pearl, where rush hour is from 8:30 am to 8:32 am. What normally takes me 20 minutes or so ended up being an hour (including an emergency stop at Tim's for coffee). Once at the hospital, Sharyn advised me that the surgery was put off due to no OR time, but she met the medical team and got to ask a few questions. She was told the surgery would be about 3 hours in duration and that the recovery would be a lot easier than the last operation.

That's about it for today, I will send another email either Tuesday or Wednesday, so if you don't hear from us, all is well and there is no change with her, either positive or negative.

Monday, cont’d:
Anyway, since there was to be no surgery, the catheter was removed, as well as the IV lines in both hands, so I feel like a free woman! They gave me a walker to help me get around. I didn’t think I’d need it, but as soon as I tried to stand up (thinking I’d be able to), my legs turned to butter and just melted out from under me. It’s amazing how you think you can do something, but your body simply won’t co-operate. I’ll be needing this walker for a nice while, after all.
When Jim got back, he was pleasantly surprised to see me sitting up in my chair, watching TV and doing my nails. Although I’ve been getting 2 sponge baths a day, I still felt like a dirt bag because my hair hadn’t been washed in a week. Helen, my nurse, was going to help me do it. But she got really busy with other more needy patients, and Jim ended up washing my hair for me early this afternoon when he got back. It felt soooo good!!! For the first time in a week, I had a craving, so Jim went down to the cafeteria and got me a slice of pizza. I stayed up in my chair until about 3:00 pm, so I was up for about 5 hours in all. Later, Jim got me a chocolate ice cream treat. I think I was pushing my luck with the ice cream. It was a bit too heavy on my stomach, and up it came. But the nausea passed as quickly as it came on. No big deal.

Tuesday, June 26, 2007

I think I overdid it yesterday, as I’m really tired – exhausted is more like it! Typical me – trying to do too much too soon! I did sit up for an hour or so, but I faded pretty fast.

Update # 6
Really good day yesterday for Sharyn. Not a lot to report, only that she is now sitting up in her chair for a couple of hours at a time, which is a great relief after being in bed for the last 5 or 6 days. She has the IV tubes removed from both hands and just the tube is left in her neck, which was left in place for the next surgery. The catheter has also been removed, so she is able to go to the washroom or use the bedpan if needed.

Yesterday she had her hair washed for the first time since the operation and did her nails, all of which is a minor deal to most of us, but to Sharyn it was like a day at the spa. She is starting to get her taste buds working, and enjoyed a slice of pizza and an ice cream… nice change from the hospital food.

That's it for today. I will touch base in the next day or so.

Wednesday, June 27, 2007

Boohoo! My day started out with a huge disappointment. I was being moved out of my private room and back to the ward because they needed my room for a patient who has a contagious disease and must be isolated. What a drag! On the up side, Mom and Doreen arrived today. I had been sooo looking forward to them coming, counting the days and hours! In retrospect, I would have liked them to have come a lot earlier, but I was expecting to be in ICU a lot longer than I was. The past week has taken its toll on Jim. He’s so tired, and really needs a break – some time for himself. Anyway, as excited as I was to see Mom and Doreen, I was nonetheless surprised at my emotional reaction. As soon as they walked through the door, I started to cry. No matter how old you are, there’s something special about having your Mom to take care of you when you’re sick. I am so lucky to be 50, with both my parents still with me and in good health. Although I was a heck of a lot better than I was a week ago, they were still a bit shocked at the condition I was in. They wasted no time shooing Jim out the door to relieve him of his duties, and setting up a “Day at the spa” for me. Mom gave me a pedicure, and Doreen shaved and massaged my legs and feet. What luxury!!! That afternoon, a nurse came by to tell me they had to put a VAC on my leg to prepare it for the skin graft. They doped me up with painkillers, but they should have put me out. It took 5 nurses a full hour to apply and set up the VAC, and it was the most barbaric, excruciating pain I have ever endured! All that scrubbing and prepping the excision site, which was a huge 6"x6" area of raw exposed nerves!!! Sheer hell!!! However, once the VAC was turned on and I got over that initial jab of intense suction, I found it was a lot less painful than just the packing and bandages. Later that afternoon, Jeanne dropped by with Nicki and Paige. The girls are so happy to be getting their summer holidays!
Here’s Jim’s email for today:

Update # 7
Not a lot to report today, but to keep you all in the loop, here it is.

Sharyn’s mother and sister, Doreen, arrived this morning, and as you can imagine, Sharyn cried tears of joy. The cards have started to pour in. She received 9 this morning. Guess what.......she cried again (great idea Kathy, she loves reading all the kind words from everyone). This morning, Sharyn was moved back into a ward room from her private room as someone need the space more than her. No big deal, as it makes sense to isolate the more serious patients. As far as I know, the next surgery is still scheduled for Friday, and this will mean that she will be transported to another hospital within the complex. Again, no big deal, as this is done many, many times throughout the week. In fact they have a unit solely for this purpose.

As for Sharyn herself, she is doing pretty well, but still suffers from nausea from time to time. Her leg isn't showing any signs of infection, which is great, but things are coming back to life and it is very painful at times, until they come in with the Happy Pills.

Can't think of what else to say except thanks for being there for her.

Thursday, June 28, 2007

Mom and Doreen spent most of the day with me today. We gabbed, played cards, etc. Funny story… There’s no air conditioning on this floor, and since I’ve been lying on my back for over a week on a plastic mattress, I have developed a huge heat rash all over my back. When the surgical team did rounds this morning, they asked how my night had been. I told then I slept well, except I had to get the nurse to give me some Benadryl at 4:00 am to relieve the itching. He asked to see the rash, so I showed him. “I see you’ve been scratching,” he said. “Yes,” I said, “the itching was driving me crazy!” He said “Well, maybe you should have put the cap back on the pen that you used to scratch with.” I roared laughing! My back was completely full of blue ink! It became the joke of the floor, and all the nurses started coming by, asking to see my back. There was so much ink that some of it rubbed off on the sheets with the sweat. One nurse, Linda, scrubbed my back as much as she could with alcohol, but she couldn’t get it all off. Too funny!!!
I had a visit from Jean, the nurse who had to put on the VAC yesterday. She wanted to apologize for all the pain she put me through yesterday, and said that she spoke with the charge nurse, and told her that if plastics wants anything done with the VAC before surgery, then they have to send someone to put me to sleep. She really felt bad about how things went down yesterday.
This afternoon, I got the surprise of my life! My lifelong friend from home, Kathy Hickman, came by for a visit! Once I got over my shock, I cried – of course. Kathy’s brother and his wife, who live in Halifax, had just recently had a baby, and Kathy and Dean were here for the Christening. We had a great visit – I even missed my supper (no big loss). So Jim brought me a sandwich from the cafeteria, which I held off eating until bedtime. Tomorrow is surgery, and I have to fast from midnight onwards.
I had one goal today – to go to the bathroom (#2). Since I have surgery tomorrow, I don’t want to go through what I went through last Saturday with trying to go to the bathroom post-op. Well, after a lot of trying, I finally did it! Thank heavens!

Friday, June 29, 2007

Of course, I woke up starving!!!! I hate having to fast! Why couldn’t they have done this surgery when I wasn’t able to eat? Now I can finally eat normally, and I’m cut off again! Mom, Doreen and Jim came by this morning, and the waiting game started. We would only get a half hour notice once the plastics team was ready for me. Jim made a quick visit to the Internet café:

Update # 8
Really quick update, as I have to get back to the hospital. Sharyn is waiting for her turn to go to surgery. It should happen sometime today, but we will only get 1/2 hour notice. She has been doing well with the nausea, but she has had only fluids since last night to prepare for the operation. On Wednesday she had a VAC machine (aka. Fart Machine) hooked up to the site.

Yesterday she had a surprise visitor from home. Kathy Hickman came to visit. Guess what.........she cried. Kathy's visit, along with more and more family either here or arriving soon, has been great. On the card front she received 5 more yesterday (more tears)

Anyway, got to go. I will email you on Saturday with an up date. Due to the amount of calls (all long distance charges for me), I will not be taking calls, except from home. I will try to return your call either late in the day or the next morning on a land line. I have caller ID.

Thanks for all your support and caring

Friday, cont’d…
They finally came for me around 2:00, and I was transported via ambulance to the Halifax Infirmary. It was my first ride ever in an ambulance. Whooppeee! Once outside the OR, I met Dr. Sigurdson, the plastic surgeon. He told me that he would prefer not to do a flap because he didn’t know how it would take on a site that had been compromised by an ILP. So for now, he opted to do a split skin graft, and in 6 months, if I wanted, I could have reconstructive surgery done. He was considering using my stomach as the donor site – Bonus! A free tummy tuck! When they went to put me to sleep, they realized that one of the lines in my neck was blocked, so they had to remove it and insert another one. Then they put me to sleep.
When I woke up, my first thought was “Am I sick? No. Great!” Then I felt to see how skinny my tummy was, and was disappointed to find that it had not been touched. Apparently, at the last minute, Dr. Sigurdson decided to use my front left thigh as the donor site, so it was all bandaged up. The VAC had been put back on my leg over the skin graft, and my leg was bandaged up in a splint. Looks like I’m back to complete bed rest for awhile. In no time at all, I was quite alert, chatting away with the nurse. All my vitals were good, and drinking water caused no nausea. The operation only took an hour and a half, but I had to wait for a few hours in the recovery room. By 8:00 pm or so, I was brought to my new room. It was a nicely decorated, air-conditioned, semi-private room, but I was told the other bed was closed for the summer. Bonus!!! It was like having an extra-large private room. The nurse offered to get me something to eat. So she immediately got me tea and toast. It was so good, I got Doreen to go get me another tea and toast. I was sooo happy to be able to eat, and to be feeling so good after this surgery. Compared to the ILP post-op, this was a walk in the park!

Update # 9
The surgery went ahead at 3pm today. From all reports, things went well. Sharyn was in the OR and recovery room for a total of 8 or nine hours. She has changed location / rooms and is now at the Halifax Infirmary in a very nice air-conditioned room.

That’s it for now. I’m beat


Saturday, June 30, 2007

Remember the other bed in my room that was closed for the summer? Well, they needed it for an emergency case. At 1:30 this morning, I was awoken by a patient being brought in. I met her later this morning, just before breakfast. Her name is Barbara, and she is 82. I was shocked, because she doesn’t look a day over 65! What a delightful woman! She’s so sweet! She has to have a colonoscopy done early next week.
Today was a good day. Mom, Doreen and I played Rummy 500. Nothing really eventful happened.

Sunday, July 1, 2007
Today being Canada Day, there’s a lot going on in Halifax today. Chris Daughtry is performing tonight, and I really wish I could go to see him. I can dream, can’t I? Aunt Helen and Uncle Ches and my cousin Janet came to visit today. It was so nice to see Janet, as I hadn’t seen her in 15 or 20 years! I got to know my roommate Barbara a bit more today. We each shared stories about our lives. She had me captivated with her story of illness, heartbreak, and finding true love.
Here’s Jim’s message to everyone:

Update #10
Sharyn had a great day on Saturday and has a very positive outlook. No signs of any nausea and the swelling in her face didn't reoccur. Her pain is being controlled by Demerol, and she is resting and getting lots of sleep. She does have the VAC hooked up, which is good, as this is one of the best things to help in the healing process. They removed the tissue from her left thigh for the graft, and she has to stay on complete bed rest until Thursday. At that time, they will check to see if the graft has taken. Also, her leg is in a half cast / splint so she is unable to move her leg at all. The doctors have said there is a 70% chance the graft will take, so we are happy with the odds.
Bye for now. I will sent another update on Monday, unless there is a big change

Update # 11
All is still going well for Sharyn… not a lot to bring you all up to speed on. I did today see where they grafted the skin from for her other leg… not pretty but it is healing well. The area is about 6 inches wide by 10 inches long. The nurses say that the new skin growth in this site will be as soft as a baby’s bottom. The location in her right groin were they did the limb perfusion has opened up a bit. It's about the size of a Loonie, so for the time being, they are packing it with dressings. The doctors don't foresee a big problem with this, but they have increased the frequency of the dressing changes, and will be watching it closely. As for the cancerous area in her leg, we still haven't gotten any labs reports yet, but that should come in the next day or so. The first look at the surgery area will be late Tuesday or Wednesday. The plastics guy will see if the graft is taking, and determine if any more surgery is required. So for the time being, she is still confined to bed with the half cast on her leg. Her spirits are high and she looks forward to seeing or speaking with you all soon.

Update # 12
Today has been on par with the last few days which, to say the least, sees Sharyn improving both in body and spirits. Today the doctors started talking about a release date, which could be as soon as FRIDAY. This will depend on the status of the removal of the dressings on her leg for the first time on Wednesday. Hopefully all will be well. The area in her groin is still a concern for us, but the doctors are feeling good about it, and with time it will heal.

So now we are talking for the first time about travelling home. We are leaning towards staying in the Halifax area for two days, then starting the drive back. I myself would have preferred Sharyn to fly home, but she is concerned over the pressure change issue which we encountered on our flight back from Edmonton. The result of that flight was a stay in hospital for a couple of weeks. So it looks like the drive it is. I have had my first lesson in cleaning and dressing the groin area, and once the leg dressings are removed, I will be shown how to do that one as well. The dressings have to be done twice a day so we figure that since we will spend over night in Corner Brook and happen to know to great nurses, we will seek out Mary or her daughter to help out (that's the night I get drunk)

That's it for now, I will let you all know tomorrow what the doctors say.


Update # 13
It will not be Friday for a release date… it now looks like early to mid next week. The plastics team looked at their handiwork for the first time since the operation; they were pleased with what they saw, and it appears the graft has taken. Sharyn walked for the first time today with the help of a walker, and will undergo physio for the next 5 days, with the goal being to get her from the walker to crutches. Her spirits were not let down by this delay. As a matter of fact, both she and I felt the need for more healing time.

Mary, I printed your email and brought it into Sharyn this morning. She laughed until she cried and made everyone who came into the room read it, but first she had the page folded so they had to read update Number 11, then your reply. For anyone else that has replied I have done my best to pass on your remarks.

Other news over the last few days, Julie and Justin arrived yesterday, Doreen leaves for St.John’s Thursday night and Carol arrives Thursday night.

That’s it until tomorrow.

Monday, July 9, 2007

The weekend was very uneventful. Doreen flew home and Carol arrived on Thursday as planned. Mom is still here. I had been quite adament about driving home -- at least 2 days of driving, plus a 6-hour ferry crossing -- but despite my protests, everyone convinced me to fly home. Carol had planned on staying longer, but she changed her plane reservation so she could accompany me home. Jim left Halifax to drive home on Saturday evening so he could be home in time to come get me at the airport. It was hard saying good-bye to him after such a rough 3 weeks, but Mom and Carol are still here to take care of me, so I'm not totally abandoned.

This morning, the doctors were by on their rounds bright and early, as usual. They took out my stitches in my groin. That was easy, but then the nurses came to take the staples out of my skin graft. YIKES!!! There were more than 60!!! Most of them came out relatively easily, but a few were embedded in my tendon behind my knee, and it took a lot out of me to have them removed. God, did that hurt!!! I have a pretty high tolerance to pain, but I was screaming, squeezing my side-rail, gritting my teeth. It took them 2 tries, each lasting about 5 minutes, to get one particular staple out of my tendon. I didn't realize it, but Mom had come by to say good-bye (she's staying on for another week with my aunt - her sister), and she was behind the curtain listening to me scream and swear the whole time. It upset her to have me in such pain, but whaddya do? The staples HAVE to come out.

Carol then started the loooong process of getting me ready to leave. Get washed, rest, wash my hair, rest, dry my hair, rest, do my make-up, rest, get half dressed, rest, finish dressing, rest, eat lunch, rest. My God, what used to take me half an hour took me about four hours to do!!! Life sure has changed for me!!

By 2:00 my nurse, Susan, had called a cab, and they wheeled me out to the cab. Getting me into the back seat was a major production, but we did it, and left for the airport. By the time we got there, I was nauseous. I knew then that I never would have made it home had I driven with Jim in the truck. Carol got an airport wheelchair, and she and the taxi driver managed to get me out of the cab and into the chair. By then I was exhausted.

The ticket agents were excellent. They whisked us through check-in immediately. Carol bought me a bottle of water and got me a barf bag -- just in case -- and we headed for security. The first agent who met us made me give up my water. Bummer!!! At the metal detector, they asked me to walk through -- yeah, right!! Carol had my leg propped up with one of her carry-ons, but they had to run it through the x-ray machine. I didn't want them to take it, but they promised to put it back under my leg as soon as it was scanned. They didn't. They just let that bag roll on down the conveyor belt while I was wincing in pain, trying to keep my leg raised on my own. I was screaming to them "Get the red bag!" and the security people just kept on ignoring me. Finally, Carol moved towards it, and they yanked her back. She was really pissed, and demanded the bag. Then they finally clued in.

Because I couldn't walk through the metal detector, they wheeled me around it. Then I was informed that I had to have a complete body search. WTF!!??? First I refused, only to be told I couldn't get on the flight if I wasn't searched. She said "We can do it right here (in the middle of the airport) or we can go to a private room." I had no choice but to comply, but I insisted that Carol be present.

Once in the room, the agent went to take my barf bag, and I said "Don't take that unless you want me to puke all over you!" Then she lifted my skirt and went to pat my legs. I screamed before she touched me "Don't touch my legs!" I mean, here I am with a skin graft donor site, a 9" groin incision, a massive 6"x6" piece gone out of my leg, and my leg blasted with chemo. I'm heavily bandaged on one leg from toe to groin, and the other from knee to groin. Did she think this was for show? Then she patted my front torso, and then asked me if I could lean forward so she could check my back. NO!!! With a huge incision in my groin, I could barely sit up, and she wanted me to lean forward??? I don't think so!! Anyway, after all that, she gave me clearance, and Carol wheeled me upstairs to wait for our flight. She bought me another bottle of water, and half a sandwich, which I did manage to get down without being sick.

The flight attendants on board were super. They offered me another seat that they thought might be more comfortable, and I tried it, but my original seat was better, so they helped me switch back. The flight was over in no time. Just before we landed, I took a dose of demerol, so by the time we actually deplaned, I was feeling no pain! Carol took me to the washroom before going downstairs,

We had to take the glass elevator down. When we got into the elevator, I looked down into the lobby, and there was at least 50 people there waiting for me, with balloons, signs, etc to welcome me home. I couldn't believe it! There was my own family (which is all I expected), my Dad, siblings, in-laws, aunts, uncles, cousins, friends, colleagues. I was totally overwhelmed! As soon as Carol wheeled me off the elevator, they broke into a thunderous applause. Jessie was the first to run to me, crying, followed by Julie, and then everyone else, showering me with hugs and kisses. WOW!!!

Jim and my brother Dave eventually brought me out to the truck, which Jim had parked right by the front door. It was difficult, but we made it. When we got home, Jim drove right up on the front lawn and parked by the front door. Gail and Leo had followed us home, and were there to help carry me in. What an ordeal!!! I went straight to bed, where I guess I'll stay for pretty much the rest of the summer.


Tuesday, July 10, 2007

Well, it's good to be back in my own bed! I have a walker, but I need help to do EVERYTHING!!! The public health nurse is coming by twice a day to change my bandages. I still can't roll over even the slightest bit on either side, so I'm continually lying on my back. Jim is still not back to work, so he is my main caregiver. Jessie, Michael and Julie are working every day, but when they're home, they help out a lot to give Jim a break. I sleep a lot, so when people call, Jim or the kids take the call for me.

Thursday, July 12, 2007

This morning I was awoken by a most disturbing phone call. My neice Janet called, crying inconsolably. I first thought she and finace Steve had broken up, but when I asked her what was wrong, she cried "Dad's dead!" Oh my God! What? Garry dead?? How?? Apparently, one of his driving students had just finished doing a road test, and Garry dropped into a local lounge and ordered a cup of coffee. He then went into the bathroom and never came out. When Garry didn't come to claim his coffee, the server went to check on him, and found him dead on the floor. A massive heart attack. The doctors said he was dead before he hit the floor. Janet was looking for her Mom (my sister Doreen), and thought she might be with me. I told her not to worry, I'd track her down.

I finally got hold of her at the Spa. She was having a manicure and pedicure done in preparation for a cruise the next day with her daughter Gill. I had no choice but to break the news to Doreen over the phone, and she was utterly devastated. She left the Spa immediately and went to Steve's, where the rest of the family was waiting.

Coming to terms with Garry's sudden death was quite difficult. For me, I was naturally shocked and deeply saddened, but I couldn't help thinking about my own imminent death. As much as I hate to lose Garry, he was so lucky to have gone so quickly. No pain, no suffering, no family members being dragged through a lengthy illness. That in itself is a blessing. But I know I won't be so lucky. My cancer will likely progress eventually, I'll have all kinds of treatments, I'll become such a burden to my family, and I'll die a slow, painful, suffering death. I'm not so much scared for myself -- if this is my journey, then I have to travel it. But it's so unfair for my family.

Sunday, July 15, 2007

It was Garry's wish to be cremated immediately, so that happened on Saturday. Today, I wanted to go to the funeral home. I had a lot of people trying to talk me out of it, but when I am determined to do something, nothing or no one will stop me. Jim realized how important this was to me, so he helped me get ready, put me in a wheelchair, and wheeled me out to the truck. Everyone at the funeral home was surprised to see me out so soon, but I was glad I went. I just sat wheelchair the whole time, but it meant a lot to me to be there with my family. Especially for Doreen. She had done sooo much for me, and now she needed me. So I had to be there.

Tuesday, July 17, 2007

Today was Garry's funeral. Although going to the funeral home on Sunday was hard on me -- I got sick when I got home, and stayed in bed ever since -- I had to attend his funeral. Our last good-bye. The funeral was wickedly sad, and of course, I bawled the whole time. I have so many emotions mixed up with the grief I'm feeling for Garry.

Tuesday, June 5, 2007

2 more weeks

Well, 2 weeks from today I will be under the knife, so to speak. It feels really weird. I feel so well now, and I'm walking normally, the wound on my leg has finally closed completely (after more than 3 months!), and I feel as normal now as I ever have. With every step I take, I'm thinking that I only have 14 days left of this quality of life. After that, I'll never walk normally again. I'm on a mission to get things done around the house -- ceramic tile in the front porch, moving Jessie to the spare room and redoing her old room, fixing the tiles around the bathtub, getting the plumbing done at the cabin, etc, etc. I feel like I won't be able to do any of those things once I get back from Halifax. I feel like my life is on hold. I can't commit to anything in the future because I don't know how I'll be. Really weird -- that's all I can say.

Wednesday, May 30, 2007

What a week! But I'm okay now.



Well!!! After a gruelling week last week, I'm finally back to my old self. I started out with a persistent, uncontrollable cough that was wearing me down, and spazzing out every muscle in my body. Even my fingers ached from coughing! I went to see Marie 2 Fridays ago, and she gave me a puffer and a nasal steroid. Neither helped. Over the long weekend, I developed an infection in my leg, and found some swollen lymph nodes, and got really worried about spreading cancer cells. Went to see Dr. Pace on Tues, and he put me on antibiotics, and said the swelling was most likely from the infection. I didn't feel the infection coming on because I have no nerves left there, so by the time i did feel it, it had worked its way up my leg. By Wednesday, I was in a lot of pain from the infection, and the cough wasn't letting up. It was so severe, I would throw up from coughing -- not pretty! And for my added pleasure, I got a migraine, and was out of medication!!!! Wed. was also Julie's convocation, but I was much too sick to go, adding guilt, self-pity and depression to the mix. When Jim got home from work, he went to the drug store to get my migraine perscription. A few hours later, at least that much of my misery was put to rest! Thank God for small favours!

On Thursday, Mom and Dad dropped in with a full roasted chicken dinner. Of course, I was still in the convulsions of coughing fits, so Dad, in his usual "tactful" way, said "Ahh, what the hell is wrong with ya, girl? Go out and get a bottle of Buckley's!" I scoffed at the idea, as I normally do, but Mom, in her voice of reason, said "Sharyn, why don't you try it? It can't hurt." So Jim went out and got me a bottle of Buckley's. I took a dose after supper, and another before bed, (did the yucky dance both times -- ewww!!!) and I slept like a baby -- cough free -- until 9:30 the next morning! I'm not joking! It was like a miracle! So I stopped using the puffer and nasal steroid, and went on the Buckley's for a few days, and now my cough is gone! Go figure!!! Who'da thunk it?

Anyway, we went to the cabin on Friday, and Jim came back Sunday, but I stayed up with friends Sherry and Cal, and came down today with them. My infection is pretty much all cleared up, and the nodes are no longer swollen. I have yet another tumour just above that infamous hole in my leg (which is getting smaller all the time), but I'm not worried about tumors now -- as long as they're in the same area. That will all be history in a few weeks. Three weeks, to be exact! It can't come soon enough so I can get on to the next phase of beating this ugly beast.

Thursday, May 17, 2007

Time to start documenting

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