Yesterday I watched the video of “The Secret”. It’s a highly philosophical discussion of the secret to happiness, health, wealth, and spiritual well-being. It’s based on the law of attraction, meaning that if you emit positive energy, you will attract positivity, and similarly, if you emit negative energy, you will attract negativity. I’ve always been a pretty positive person, so this was no surprise to me. It just made sense. It’s how I’ve always tried to live my life.
It also talked about achieving goals and dreams. When you want something, you have to not only wish for it, but you have to make that goal or dream a part of your very being – feel it, visualize it, believe it. It’s not like magic and poof! – it’s there. It’s more like this dream, being a deeply rooted part of you, will motivate you to make it happen, and attune you to recognize opportunities that can help you achieve that. Again, that’s how I’ve always tried to achieve my goals. I can honestly say that every reasonable goal I’ve set for myself, I’ve achieved. But you have to dream in a positive way. It’s no good to hope that something doesn’t happen. That’s a negative thought. You have to envision it in a positive sense.
I spent several hours digesting all this information, and applied it to my own situation. Sure, I have hopes and dreams of going back to school, retiring, selling my house and moving up to our cabin, and I have visualized myself doing all these things. But I haven’t been doing this with melanoma.
When I was first diagnosed, I was devastated, of course. I was totally ignorant of my disease, I put my faith in the doctors unconditionally, and I believed them when I was told 3 months later that I was essentially cured. I went back to work, back into my positive mode, grateful for every single day, visualizing myself in a healthy state, and completing the next four years to retirement. When I recurred six months later, I took it in stride. I got through it before; I’d get through it again. But when that recurrence manifested two more tumors, and 2 more surgeries couldn’t achieve negative margins, I knew I had to take control of my own life and my treatment by learning as much as I could about melanoma.
I was ravenous for information. Fortunately, having recently completed my M. Ed. Program, my research skills were finely tuned, and being off work and home alone all day long afforded me countless hours, days, weeks, to feed my insatiable appetite for knowledge and understanding. Looking back, I can see how visualizing and positive thinking played a huge role in what was to happen next. I sensed stress and negativity from Dr. Rorke, but positivity from Dr. Pace. So I gravitated towards the latter. Even though Dr. Pace is a general surgeon, and admittedly knows very little about melanoma, he spoke on my behalf to his medical school friend, Dr. Giacomantonio. As a result of all my research, what I really believed was my best shot at a cure was an Isolated Limb Perfusion, which is exactly what Dr. Giacomantonio suggested.
It was a terribly rough treatment, and recovery was long, but I drew from Dr. Giacomantonio’s positivity, and envisioned myself cured, made plans to go back to school in September, and get on with my life.
I never lost touch with the reality of my disease, and the possibility that it could possibly return, so I continued throughout the following year to have every suspicious lump and bump biopsied. And they always came back negative – except for the one I had found on May 9/08. I had it biopsied on May 13. (Dr.Pace is wonderful at getting me in quickly.) At first, it came back negative. But Dr. Clarke, my dermatologist, wasn’t satisfied with the thoroughness of the report, so she pushed to have it re-biopsied, which Dr. Pace did on May 29. This time, it came back positive, and I got that news on June 18, one day short of my first anniversary of being disease-free. So really, when you look at it, I was only disease-free for less than 11 months – or was I ever truly disease-free at all?
On a positive note, it was quite fortunate that Dr. Clarke was as thorough as she was. Dr. Pace had taken the first pathology report at face value, and assumed all was well. Dr. Clarke, however, wasn’t satisfied, and if she hadn’t gone that extra mile, the melanoma could have spread like wildfire. So for that I’m unbelievably grateful. This, to my mind, is the law of attraction in full swing.
But with this unexpected recurrence came a flood of fear. Although the PET scan in July confirmed no distant metastases, and my surgery in September achieved clear margins, instead of being thankful and positive, I was inwardly doubtful and scared. I knew it was only a matter of time before it would spread. I started envisioning myself wasting away from chemo, envisioning being on my death bed, worrying about how my children, step-children and husband would handle my death. When I found myself consumed by all these negative feelings, I thought it was my spirituality preparing me for the worst, and steering me on a path of acceptance. I was also more aware of the negativity of people around me. My husband Jim was particularly negative. Not intentionally, but he was avoiding me, didn’t want to discuss anything, wouldn’t look at my surgery sites, wouldn’t change my bandages, got frustrated doing things around the house, complained about what the kids were NOT doing to help out, rechannelled his energy into his work. As wonderful as he had been in the past, this time he wasn’t dealing with it well at all.
In a way, I probably brought on a lot of his negativity myself. One night he even told me that I kept telling people that I was going to die from this, and he found that hard. My response was that I wanted to prepare everyone for the worst, and help everyone accept what would inevitably happen. On reflection, I realized I had been not telling, but "assuring" people that melanoma is a fatal disease, that I have a six-month prognosis once it spreads to my organs – and it WILL spread -- and that I don’t expect to live to see my 55th birthday. But after watching “The Secret” yesterday, I can see how I have been negative, and how my negativity has been attracting more negativity. In my efforts to prepare myself and everyone else for the worst, I had in fact given up!!! I was unconsciously envisioning myself in my coffin, envisioning my family grieving my death, making those images a part of me. I also realized that if I kept up those thoughts, THAT’S EXACTLY WHAT WAS GOING TO HAPPEN!!!! I have all this knowledge that my positive mindset guided me to learn, yet I was ignoring it all, and allowing fear and negativity to take over my whole being!!! I had fallen victim to hopelessness and despair!
But it’s not too late. I’ve been given a wake-up call. I have to resume being pro-active, not reactive. I have to think positive, envision myself at my children’s weddings, holding all my grandchildren in my arms when they’re born, living many years into my retirement at our cabin with Jim, going on trips, and most of all, I have to envision myself HEALTHY AND DISEASE-FREE!!!! That, my friends, is the power of THE SECRET!!!
Wednesday, October 8, 2008
Tuesday, September 23, 2008
Week of Sept 15-23/08
September 23/08
I saw Dr. Rideout last Monday (Sept 15), and I saw my excision for the first time. Although I knew what to expect, it was nonetheless a bit of a shock to see another huge chunk gone from my leg. The crescent-shaped hole measures 15cm long x 5cm wide x 2cm deep. On the up side, however, comparing it to last year’s excision right next to it, I realized how well I had healed from that, and knew that this time next year, this new scoop-out would look as good as the first one does now. Dr. Rideout said the wounds looked great, and he made arrangements for Home Care to come by daily for dressing changes. I have over 40 staples, the graft donor site is the same site that was used last year (anterior left thigh), and I still have to stay on complete bed rest and wear a splint.
On Tuesday I saw Dr. Pace, and he was pleased with how I was healing. He said that since Dr. Rideout would be doing follow-up for the skin graft, there was no need to come back to see him too. In the meantime, he’s still investigating that 6mm nodule in my thigh, and when he amasses all the PET, CT and MRI scans, he’ll bring them to a radiologist to compare them all. Hopefully that nodule will turn out to be nothing more than an innocent cyst or scar tissue.
By Thursday, Dr. Pace phoned with the pathology results, and he faxed them to me. All the margins are clear. The specimen was divided into three sections, top, middle and bottom. The top and bottom sections were negative for melanoma. The middle section tested positive, but with clear margins. The depth margin was a minimum of 7mm, and the lateral margin was a minimum of 2 mm. That’s still pretty close, but they localized it to the superio-lateral margin, so at least we know what direction it’s taking – towards the knee-cap.
Jim took the rest of the week off to take care of me. I had planned on going up to the cabin again with Cal and Sherry on Thursday because I can’t travel in Jim’s truck, but Jim wanted me to stay home with him. He went out for awhile, and when he came back, he showed me a picture on his phone of a red Ford Escape. I asked “Is that the SUV you’re thinking of buying?” He replied “No, that’s the SUV that I just bought!” WOW!!! He didn’t have it yet, as he ordered a trailer hitch and a remote starter, but he’d have it the next day. He said he was frustrated with me not being able to ride in the truck, so he traded it in on an SUV. I told him this was only a temporary handicap, but he figured I’d likely have more surgeries in the future. He’s probably right.
So Friday, we headed up to the cabin in our new Escape. Early that evening, while Jim was hosing down the quad in the garden, a huge cow moose sauntered up the driveway, walked right past Jim, went behind the shed, and headed into the woods! That was quite a sighting! Later we went over to Cal and Sherry’s for the evening. Daphne was having a ladies only night, and they all came over to visit, decked off in grass skirts and bandanas, and well on! Daphne, Brittney, Courtney, Natasha, Doris and Dessie, all well into party mode!!!
On Saturday, my friend Pam (who’s a nurse) came by to change my dressings. As she approached the driveway, she quickly veered away when she saw two moose lingering at the bottom of our driveway. She went over to visit Sherry instead, and came back after the moose had gone. I went over to Sherry’s for the afternoon while Cal and Jim went for a run on the quads to Gould’s Pond to visit Cal’s friend Alex, and while we were lazing outside in the fall sunshine, Mom, my sister Doreen, brother Dave and sis-in-law Judy showed up, laden with 2 huge striploin roasts destined to be sliced into steaks for the BBQ, and a load of salads. So we headed back to our place, and Sherry joined us. Then our friends Susan and Dean Coates dropped by, Greta Lynch dropped by with a gift of a bottle of wine, and soon Jim and Cal came home. What a crowd in our little cabin! See? That’s why we need that extension!!
We came back to town on Sunday, and I’ve been bored out of my mind since then. Tomorrow I’ll be getting my staples out, and hopefully be freed of the splint. I’ll be seeing Dr. Rorke on Oct 2, when I’m sure we’ll be discussing adjuvant treatment. Until then, all I have to do is get stronger and get back to normal!
I saw Dr. Rideout last Monday (Sept 15), and I saw my excision for the first time. Although I knew what to expect, it was nonetheless a bit of a shock to see another huge chunk gone from my leg. The crescent-shaped hole measures 15cm long x 5cm wide x 2cm deep. On the up side, however, comparing it to last year’s excision right next to it, I realized how well I had healed from that, and knew that this time next year, this new scoop-out would look as good as the first one does now. Dr. Rideout said the wounds looked great, and he made arrangements for Home Care to come by daily for dressing changes. I have over 40 staples, the graft donor site is the same site that was used last year (anterior left thigh), and I still have to stay on complete bed rest and wear a splint.
On Tuesday I saw Dr. Pace, and he was pleased with how I was healing. He said that since Dr. Rideout would be doing follow-up for the skin graft, there was no need to come back to see him too. In the meantime, he’s still investigating that 6mm nodule in my thigh, and when he amasses all the PET, CT and MRI scans, he’ll bring them to a radiologist to compare them all. Hopefully that nodule will turn out to be nothing more than an innocent cyst or scar tissue.
By Thursday, Dr. Pace phoned with the pathology results, and he faxed them to me. All the margins are clear. The specimen was divided into three sections, top, middle and bottom. The top and bottom sections were negative for melanoma. The middle section tested positive, but with clear margins. The depth margin was a minimum of 7mm, and the lateral margin was a minimum of 2 mm. That’s still pretty close, but they localized it to the superio-lateral margin, so at least we know what direction it’s taking – towards the knee-cap.
Jim took the rest of the week off to take care of me. I had planned on going up to the cabin again with Cal and Sherry on Thursday because I can’t travel in Jim’s truck, but Jim wanted me to stay home with him. He went out for awhile, and when he came back, he showed me a picture on his phone of a red Ford Escape. I asked “Is that the SUV you’re thinking of buying?” He replied “No, that’s the SUV that I just bought!” WOW!!! He didn’t have it yet, as he ordered a trailer hitch and a remote starter, but he’d have it the next day. He said he was frustrated with me not being able to ride in the truck, so he traded it in on an SUV. I told him this was only a temporary handicap, but he figured I’d likely have more surgeries in the future. He’s probably right.
So Friday, we headed up to the cabin in our new Escape. Early that evening, while Jim was hosing down the quad in the garden, a huge cow moose sauntered up the driveway, walked right past Jim, went behind the shed, and headed into the woods! That was quite a sighting! Later we went over to Cal and Sherry’s for the evening. Daphne was having a ladies only night, and they all came over to visit, decked off in grass skirts and bandanas, and well on! Daphne, Brittney, Courtney, Natasha, Doris and Dessie, all well into party mode!!!
On Saturday, my friend Pam (who’s a nurse) came by to change my dressings. As she approached the driveway, she quickly veered away when she saw two moose lingering at the bottom of our driveway. She went over to visit Sherry instead, and came back after the moose had gone. I went over to Sherry’s for the afternoon while Cal and Jim went for a run on the quads to Gould’s Pond to visit Cal’s friend Alex, and while we were lazing outside in the fall sunshine, Mom, my sister Doreen, brother Dave and sis-in-law Judy showed up, laden with 2 huge striploin roasts destined to be sliced into steaks for the BBQ, and a load of salads. So we headed back to our place, and Sherry joined us. Then our friends Susan and Dean Coates dropped by, Greta Lynch dropped by with a gift of a bottle of wine, and soon Jim and Cal came home. What a crowd in our little cabin! See? That’s why we need that extension!!
We came back to town on Sunday, and I’ve been bored out of my mind since then. Tomorrow I’ll be getting my staples out, and hopefully be freed of the splint. I’ll be seeing Dr. Rorke on Oct 2, when I’m sure we’ll be discussing adjuvant treatment. Until then, all I have to do is get stronger and get back to normal!
Surgery's over!!!
September 12, 2008
As I write this, I am sitting in the late summer sunshine on Sherry and Cal’s sundeck in Bull Pond. My surgery was Monday, Sept 8, and I’m doing amazingly well.
I had my appointment with Dr. Pace on Aug 12, and he decided he would excise the positive area below my knee, and Dr. Rideout would do the grafting. However, Dr. Rideout was on vacation, so we had to wait until he returned, which wouldn’t be until Aug 28. In the meantime, I kept phoning Dr. Pace’s office to see if I had a surgery date, but although I was assured I was classed as a #2 priority (within 2-3 weeks), nothing had been scheduled. On Aug 28 I was at the hospital with my friend Mary Robertson, whose brother Peter Bonia was in having an angiogram and stent procedure. While we were waiting, I decided to go downstairs to Dr. Pace’s office to see if I had an appointment yet. His secretary Janice told me that I was tentatively scheduled for Sept 22, as that was the earliest date that both Dr. Pace and Dr. Rideout were available. A short while later, I actually ran into Dr. Pace, and I told him that I thought Sept 22 was a long time to wait, considering it had already been almost 4 months since I first found the new tumor. He agreed, and told me that he would be willing to do the skin graft himself, if that was alright with me. I was all for it, so he said he’d try to get me in next week.
Janice called a few days later and told me I was scheduled for Mon, Sept 8, and that I had to go in for pre-admission procedures on Fri, Sept 5. In the meantime, I had been investigating another angle to solve the mystery of that nodule in my thigh. Dr. Pace had set me up with a CT scan of my leg on Aug 22 to try to zero in on the exact location of the thigh nodule, but it didn’t tell us anything more than we already knew, which was precious little. Yet, it’s still an issue that has to be dealt with, but we need to know more about it. Dr. Giacomantonio had said that if it was on the other side of my leg, he wouldn’t have been so concerned, but its location seems to be right in the path of the lymphatic channel, so it can’t be ignored. It had occurred to me a few weeks ago that my Edmonton PET scan done in March 2007 picked up a non-specific nodule 10 cm above the surgical site. The Halifax PET scan gave no measurement of location, only that it was located in the medial anterior thigh. I wondered if both PET scans had picked up the same thing. So I contacted the Cross Cancer Institute in Edmonton to request a copy of my PET scan, as Dr. Pace said he would have a radiologist compare both PETs and the CT. If the nodule was the same in both, and if it hadn’t changed, then we could assume it’s benign. Similarly, if it had grown, we could assume it was malignant. By the time Sept 8 rolled around (my surgery day), Dr. Pace still hadn’t received the PET scan from Edmonton, so he decided we’d deal with the lower leg for now, and tackle the thigh later if necessary.
In the few days leading up to my surgery, I became quite anxious, although I tried not to show it. Jim knew how I felt, and he was probably just as anxious as I was, but he kept assuring me that it would be a breeze. I had to register at 12:30 for my 2:00 surgery. I was called in at 1:30, prepped, and then left to wait for over 3 hours! Dr. Pace dropped by to see me, and told me that Dr. Rideout would be doing the skin graft after all. I was pleased about that, even though I had every bit of confidence in Dr. Pace doing the entire procedure. It was 5:00 when Dr. Ed Redmond administered the anesthetic, and at 6:30 I woke up in the recovery room. No nausea!!! What a relief!!! There were only 2 nurses working there, so I never got up to my room until 9:30, where Jim and Jessie were waiting. I had to use the bathroom, and two nurses were there to help me, but I amazed even myself to discover that I was well able to walk to the bathroom unassisted! Jim and Jessie made sure I had tea and toast, and when I was still hungry, Jim got me some veggies and dip and a bag of Bits & Bites from a vending machine. The nurse got my phone hooked up, Jessie got the TV hooked up, so I was all set. When I thought things were as good as they could get, they got even better. The nurse detached my IV so I could go to the bathroom again, and when she went to reconnect it, the needle became dislodged. They had had such a hard time getting an IV needle in me earlier because my veins are so small, the nurse decided to take the IV out altogether. What a break!!!
I didn’t sleep very well that night. I guess having been asleep for most of the day was enough, or maybe it was the continual ticking of the clock on the wall, but I was awake every half hour all night long. In the morning, Dr. David Harrington, Dr. Pace’s resident, came by to see me, and was amazed at how well I was doing. He thought I should go home then, but he’d check with Dr. Pace. As it turned out, I had to stay another day. But I quite enjoyed that day. Although I had requested a private room, I was in a ward of 4 beds, and my roommates were very nice. Marie was being discharged that morning, but she shared with us the difficult life she had. She was now in the process of divorcing her husband of 13 years, who was now in jail, and who had physically and mentally abused her for the duration of their marriage. She recounted horrible scenes of beatings that her children witnessed. And she also had lost a child, who had been run over by a car and dragged 40 feet and was killed. My God, what hell some people have to live through!!! Now she was worried about how she would care for her remaining 2 children, as she had no insurance, no disability, no EI, and couldn’t work until she was healed. I tried to boost her spirits, and give her some positive feedback and proactive suggestions, like asking her doctor for a letter confirming that she needed 24-hour assistance. He granted her request and covered her for up to the end of October. Now she was able to apply to Social Services for the help she needed. By the time she left, she was feeling much better about what she was going home to.
Another roommate was Karen, a 35 year-old wife and mother of 2 boys, who had just moved back to Paradise from a 15-year stage in Toronto. She had had most of her lower bowel removed, and was learning to live with having a colostomy. This would be reversed in 6 months, but for now, she was having a hard time coming to terms with her new condition. She had to pass an “evaluation” before she could be discharged, which determined if she was emotionally ready to deal with this on her own. That day she failed miserably, but the next day she had a remarkable turn-around. After crying to her husband the night before, and talking to each of her sisters on the phone for hours, she made a conscious decision to change her perspective. Instead of being repulsed by her colostomy and the maintenance of it, she decided to regard it as a masterpiece in progress, a fascinating work of art being created by a talented artist, her doctor. She told him she was honoured to display his workmanship, knowing that in 6 months she would be a testament to his finished masterpiece. She was re-evaluated again that morning, and passed with flying colours! It just goes to show, it’s all in your attitude!
That second day in hospital was more of a social event for me. Jim dropped by early in the morning with a McDonald’s breakfast, and was back again at lunch time with a Tim Horton’s coffee. I had lots of other visitors too: Mom, Sherry, Jessie, Scott, Julie, Mark, Crystal, Taylor, Kathy Adey. I received a beautiful fruit basket from Kevin, Rhonda and Lindsay. I got phone calls from Mom, Dave, Doreen, Carol, Kevin, Pop and Bonny, Abbie, Jessie, Julie, Ricky, Mark and Crystal. I even got a call from a former student from Corner Brook, Sandy Spencer, who has recently reconnected with me and is now living in Toronto.
I slept well Tuesday night, despite the constant grinding of medical equipment on our newest roommate just out of surgery. The next morning I was visited by Dr. Harrington, Dr. Pace and Dr. Rideout, all of whom agreed that I could go home on complete bedrest. Dr. Rideout was particularly adamant about staying immobile, saying that if the skin graft gets disturbed “all bets are off”. Jessie came to get me, Pam King-Jesso dropped by and helped get me downstairs and in the car. Downstairs we ran into Michelle Williams, who also helped, and I was home by 2:30, less than 48 hours after my surgery, and feeling surprisingly well!
On Thursday morning, Cal and Sherry came by to pick me up. I had decided the country would be the best place to recuperate. At home I would have been by myself all day long, having to face stairs to go to the bathroom, and having to tend to the dogs, visitors and phone calls. In the country I could stay with Cal and Sherry and they could take care of me until Jim came up on Friday evening, there would be no stairs to navigate, and no phone calls or visitors. And I have to say that Sherry is the best caregiver anyone could ever want. She brings me all my meals, helps me reposition myself comfortably, helps me bathe, changes my bandages. My friend Daphne Foote has also been by several time to visit and to help out. She even sent over a delicious supper last night. Heck, I’m better off here than in the hospital!
So here I am, "Hove off like the whore of Babylon", as Sherry would say, in a lounging chair in the beautiful sunshine. I’ve just finished a delicious bowl of lentil soup, compliments of my dear friend Kathy Hickman, who delivered a pot of soup to my door early yesterday morning. She is definitely the soup queen!! Ricky is on his way home from Baie Verte and will stop by for a visit, and Jim will be up after supper. I’ll stay here until Sunday, and I’ll go see Dr. Rideout on Monday, and Dr. Pace on Tuesday. All in all, I think this recovery will be a piece of cake!
As I write this, I am sitting in the late summer sunshine on Sherry and Cal’s sundeck in Bull Pond. My surgery was Monday, Sept 8, and I’m doing amazingly well.
I had my appointment with Dr. Pace on Aug 12, and he decided he would excise the positive area below my knee, and Dr. Rideout would do the grafting. However, Dr. Rideout was on vacation, so we had to wait until he returned, which wouldn’t be until Aug 28. In the meantime, I kept phoning Dr. Pace’s office to see if I had a surgery date, but although I was assured I was classed as a #2 priority (within 2-3 weeks), nothing had been scheduled. On Aug 28 I was at the hospital with my friend Mary Robertson, whose brother Peter Bonia was in having an angiogram and stent procedure. While we were waiting, I decided to go downstairs to Dr. Pace’s office to see if I had an appointment yet. His secretary Janice told me that I was tentatively scheduled for Sept 22, as that was the earliest date that both Dr. Pace and Dr. Rideout were available. A short while later, I actually ran into Dr. Pace, and I told him that I thought Sept 22 was a long time to wait, considering it had already been almost 4 months since I first found the new tumor. He agreed, and told me that he would be willing to do the skin graft himself, if that was alright with me. I was all for it, so he said he’d try to get me in next week.
Janice called a few days later and told me I was scheduled for Mon, Sept 8, and that I had to go in for pre-admission procedures on Fri, Sept 5. In the meantime, I had been investigating another angle to solve the mystery of that nodule in my thigh. Dr. Pace had set me up with a CT scan of my leg on Aug 22 to try to zero in on the exact location of the thigh nodule, but it didn’t tell us anything more than we already knew, which was precious little. Yet, it’s still an issue that has to be dealt with, but we need to know more about it. Dr. Giacomantonio had said that if it was on the other side of my leg, he wouldn’t have been so concerned, but its location seems to be right in the path of the lymphatic channel, so it can’t be ignored. It had occurred to me a few weeks ago that my Edmonton PET scan done in March 2007 picked up a non-specific nodule 10 cm above the surgical site. The Halifax PET scan gave no measurement of location, only that it was located in the medial anterior thigh. I wondered if both PET scans had picked up the same thing. So I contacted the Cross Cancer Institute in Edmonton to request a copy of my PET scan, as Dr. Pace said he would have a radiologist compare both PETs and the CT. If the nodule was the same in both, and if it hadn’t changed, then we could assume it’s benign. Similarly, if it had grown, we could assume it was malignant. By the time Sept 8 rolled around (my surgery day), Dr. Pace still hadn’t received the PET scan from Edmonton, so he decided we’d deal with the lower leg for now, and tackle the thigh later if necessary.
In the few days leading up to my surgery, I became quite anxious, although I tried not to show it. Jim knew how I felt, and he was probably just as anxious as I was, but he kept assuring me that it would be a breeze. I had to register at 12:30 for my 2:00 surgery. I was called in at 1:30, prepped, and then left to wait for over 3 hours! Dr. Pace dropped by to see me, and told me that Dr. Rideout would be doing the skin graft after all. I was pleased about that, even though I had every bit of confidence in Dr. Pace doing the entire procedure. It was 5:00 when Dr. Ed Redmond administered the anesthetic, and at 6:30 I woke up in the recovery room. No nausea!!! What a relief!!! There were only 2 nurses working there, so I never got up to my room until 9:30, where Jim and Jessie were waiting. I had to use the bathroom, and two nurses were there to help me, but I amazed even myself to discover that I was well able to walk to the bathroom unassisted! Jim and Jessie made sure I had tea and toast, and when I was still hungry, Jim got me some veggies and dip and a bag of Bits & Bites from a vending machine. The nurse got my phone hooked up, Jessie got the TV hooked up, so I was all set. When I thought things were as good as they could get, they got even better. The nurse detached my IV so I could go to the bathroom again, and when she went to reconnect it, the needle became dislodged. They had had such a hard time getting an IV needle in me earlier because my veins are so small, the nurse decided to take the IV out altogether. What a break!!!
I didn’t sleep very well that night. I guess having been asleep for most of the day was enough, or maybe it was the continual ticking of the clock on the wall, but I was awake every half hour all night long. In the morning, Dr. David Harrington, Dr. Pace’s resident, came by to see me, and was amazed at how well I was doing. He thought I should go home then, but he’d check with Dr. Pace. As it turned out, I had to stay another day. But I quite enjoyed that day. Although I had requested a private room, I was in a ward of 4 beds, and my roommates were very nice. Marie was being discharged that morning, but she shared with us the difficult life she had. She was now in the process of divorcing her husband of 13 years, who was now in jail, and who had physically and mentally abused her for the duration of their marriage. She recounted horrible scenes of beatings that her children witnessed. And she also had lost a child, who had been run over by a car and dragged 40 feet and was killed. My God, what hell some people have to live through!!! Now she was worried about how she would care for her remaining 2 children, as she had no insurance, no disability, no EI, and couldn’t work until she was healed. I tried to boost her spirits, and give her some positive feedback and proactive suggestions, like asking her doctor for a letter confirming that she needed 24-hour assistance. He granted her request and covered her for up to the end of October. Now she was able to apply to Social Services for the help she needed. By the time she left, she was feeling much better about what she was going home to.
Another roommate was Karen, a 35 year-old wife and mother of 2 boys, who had just moved back to Paradise from a 15-year stage in Toronto. She had had most of her lower bowel removed, and was learning to live with having a colostomy. This would be reversed in 6 months, but for now, she was having a hard time coming to terms with her new condition. She had to pass an “evaluation” before she could be discharged, which determined if she was emotionally ready to deal with this on her own. That day she failed miserably, but the next day she had a remarkable turn-around. After crying to her husband the night before, and talking to each of her sisters on the phone for hours, she made a conscious decision to change her perspective. Instead of being repulsed by her colostomy and the maintenance of it, she decided to regard it as a masterpiece in progress, a fascinating work of art being created by a talented artist, her doctor. She told him she was honoured to display his workmanship, knowing that in 6 months she would be a testament to his finished masterpiece. She was re-evaluated again that morning, and passed with flying colours! It just goes to show, it’s all in your attitude!
That second day in hospital was more of a social event for me. Jim dropped by early in the morning with a McDonald’s breakfast, and was back again at lunch time with a Tim Horton’s coffee. I had lots of other visitors too: Mom, Sherry, Jessie, Scott, Julie, Mark, Crystal, Taylor, Kathy Adey. I received a beautiful fruit basket from Kevin, Rhonda and Lindsay. I got phone calls from Mom, Dave, Doreen, Carol, Kevin, Pop and Bonny, Abbie, Jessie, Julie, Ricky, Mark and Crystal. I even got a call from a former student from Corner Brook, Sandy Spencer, who has recently reconnected with me and is now living in Toronto.
I slept well Tuesday night, despite the constant grinding of medical equipment on our newest roommate just out of surgery. The next morning I was visited by Dr. Harrington, Dr. Pace and Dr. Rideout, all of whom agreed that I could go home on complete bedrest. Dr. Rideout was particularly adamant about staying immobile, saying that if the skin graft gets disturbed “all bets are off”. Jessie came to get me, Pam King-Jesso dropped by and helped get me downstairs and in the car. Downstairs we ran into Michelle Williams, who also helped, and I was home by 2:30, less than 48 hours after my surgery, and feeling surprisingly well!
On Thursday morning, Cal and Sherry came by to pick me up. I had decided the country would be the best place to recuperate. At home I would have been by myself all day long, having to face stairs to go to the bathroom, and having to tend to the dogs, visitors and phone calls. In the country I could stay with Cal and Sherry and they could take care of me until Jim came up on Friday evening, there would be no stairs to navigate, and no phone calls or visitors. And I have to say that Sherry is the best caregiver anyone could ever want. She brings me all my meals, helps me reposition myself comfortably, helps me bathe, changes my bandages. My friend Daphne Foote has also been by several time to visit and to help out. She even sent over a delicious supper last night. Heck, I’m better off here than in the hospital!
So here I am, "Hove off like the whore of Babylon", as Sherry would say, in a lounging chair in the beautiful sunshine. I’ve just finished a delicious bowl of lentil soup, compliments of my dear friend Kathy Hickman, who delivered a pot of soup to my door early yesterday morning. She is definitely the soup queen!! Ricky is on his way home from Baie Verte and will stop by for a visit, and Jim will be up after supper. I’ll stay here until Sunday, and I’ll go see Dr. Rideout on Monday, and Dr. Pace on Tuesday. All in all, I think this recovery will be a piece of cake!
Friday, August 1, 2008
Unexpected Recurrence
My recovery from the ILP was long. By August/07, I had progressed to a walker, and was able to go to the cabin and lie on the couch there all day. By September, I was walking with a cane; by October, I was able to drive, and got a handicapped parking permit. By November, I was able to walk on my own, (albeit gingerly), and in December, I danced at our Christmas staff party. In January/08 I started physio, and by March I was ready to start a rehab strengthening program at the gym. Finally, I was back to normal!! It was so nice to be running into friends at the gym, and they would all be so happy to see how well I was doing.
Throughout the year, I had several biopsies. I guess after what I've been through, it's only normal to freak at every new lump and bump. But Dr. Pace has been fabulous. He would see me immediately, excise the new lump, and then call me with the negative results. I was starting to feel like the little boy who cried "Wolf!".
On May 9/08, I felt a lump about an inch to the right of my "shark bite", and on May 13 it was biopsied. (See? I told you Dr. Pace was Johnny-on-the-spot!) He called me on the 19th to say it was negative, but that the pathology reported it as panniculitis. I didn't care what it was, as long it wasn't melanoma! But I had just discovered a similar lump about 2 inches below the first one. As luck would have it, I had my 3-month dermatologist check up with Dr. Clarke on the 21st. She had read the latest path report, and didn't like the way it was worded -- "No definite evidence of melanoma". Plus, she said, something had to be causing this panniculitis, so she would check into it. By the 23rd, Dr. Clarke, Dr. Pace and the pathologist had decided that yes, they should probably investigate further. So on May 29th, I was back in day surgery to have more of the first lump and all of the second lump removed.
Thursday, June 19, 2008 would have been my first anniversary mark of being disease-free, and I was poised for a big celebration. But on June 18th, Dr. Pace called me with the new results -- Positive, both of them!! SH*T!!!! And to make matters worse, the margins were still positive!!! Dr. Pace faxed me the path report.
I called Dr. Giacomantonio right away, and faxed the path report to him. By Friday, his secretary called back with an appointment for a PET scan in Halifax for June 26th. I called the hospital here and got my CT scan moved up to that very day. So Jim and I left on the 25th, stayed with Jeanne and John, and came home on the 29th. I got the PET scan results by Thursday, and it showed no distant mets. THANK GOD!!! The groin area lit up from scar tissue, the knee area lit up from scar tissue and mel cells, and there was a "non-specific" nodule in my medial anterior thigh. Hmmm... I wonder what that could be????
Dr. Giacomantonio had left for a 3 week vacation, and wouldn't be back until mid-July, so I had to wait until he came back. I finally got a call to go see him on July 28, so I flew up for the day. Jim couldn't come with me this time, and Jeanne and John were here in Nfld on vacation, so I was on my own. But as luck would have it, Janet and Steve were in Halifax on gov't business, and were booked to fly home Sunday evening. When they found out I was coming up on Monday, they changed their travel plans and stayed in Halifax an extra day so they could pick me up at the airport, come to the hospital with me, spend the rest of the day doing lots of fun things (shopping, lunch, drinks on a downtown deck, waterfront walk, casino, [I won $80], supper at Steve’s Aunt Mary’s), and flying home with me that night. Isn’t my family just super?!!!
Anyway, here's what was decided when we met with Dr. Giacomantonio. First of all, I will not be having another Isolated Limb Perfusion at this point, and any proposed treatment will be done in St. John's and not in Halifax, all of which I’m quite happy about. Before any treatment can be started, I have to have surgery to remove the section of flesh on my leg where the new tumors were (right next to the section they took last year), and a skin graft, using healthy skin from my good leg. To me, considering what I’ve been through to date, that is a relatively minor procedure, and recovery should be only about a month. However, my surgeon, Dr. Pace is on vacation until Aug 11, and I have an appointment to see him on Aug 12. Then he and Dr. Rideout (plastic surgeon) have to coordinate OR time to do this procedure, so I’d say I’m looking at a good month before anything gets done.
The second phase is a systemic (whole body) treatment, and would be either Interferon or a chemotherapy called DTIC. Which one I do depends on 2 things: whether or not they achieve negative margins in the surgery (ie, get all the cancer cells), and whether or not a 6mm nodule in my thigh that showed up on the PET scan is cancerous.
They won’t do a surgical biopsy on that thigh nodule, as they can’t feel it, so they’d have to open my entire thigh to find it, which is rather radical if it turns out to be nothing. They may possibly be able to do a guided needle biopsy (find the tumor either by CT scan or ultrasound, and use that image to guide the needle to it, extract some fluid from it, and test it for cancer). If they can’t do that here, they wouldn’t send me elsewhere to have it done. It would come down to being just be an educated guess between my oncologist and the radiologist… Do they consider it to be malignant or benign? Given my history, I’m hoping that they’d err on the side of caution and presume it to be a tumor, but that’s not my call. Here are the various scenarios:
Negative margins from surgery + benign thigh nodule = Interferon
Negative margins from surgery + malignant thigh nodule = DTIC
Positive margins from surgery + doesn’t matter if thigh is malignant or benign = DTIC
What is Interferon? Everyone has interferon, which is a molecule that activates the immune system. The immune cells in melanoma patients fail to respond properly to natural interferon, so the cells are less able to fend off the cancer. Taking Interferon as a treatment essentially wakes up the immune system to recognize the cancer cells as foreign, and to fight them off. It’s administered intravenously 5 times a week. The side effects are wicked, (nausea, vomiting, major fatigue, fever and chills, cardiac problems, liver damage, bone marrow toxicity, thyroid dysfunction, etc), but vary in different people, and the response rate is only about 10%. Low, I know, but it’s better than 0%. That treatment would only be for a month, but if the side effects got too bad, I’d come off it before the month was up. Interferon can only be given if there is no evidence of disease.
What is DTIC? It’s a form of chemotherapy. Its real name is Dacarbazine, but it has a derivative called Temozolomide, which can be taken orally, and that’s what I’d be taking. DTIC is generally considered to be the most active single agent in patients with metastatic melanoma with a response rate of 8% to 20%. It is generally well tolerated with “possible” side effects being limited to minor nausea and vomiting. Bone marrow suppression is usually only modest, and alopecia (hair thinning) and fatigue are minimal, allowing most patients to maintain relatively normal function while receiving therapy, which could go on indefinitely. DTIC can only be given if there is measureable active disease present.
So for now, I just sit and wait for August 12 to come,when I see Dr. Pace. In the meantime, I feel and look healthier than I ever did before, I have loads of energy, and if it weren't for this recurrence, I'd be soon getting ready to go back to school. It's funny how I can feel so well, yet know there's a major takeover going on inside my body. Cancer really is such an insidious disease!!!
Throughout the year, I had several biopsies. I guess after what I've been through, it's only normal to freak at every new lump and bump. But Dr. Pace has been fabulous. He would see me immediately, excise the new lump, and then call me with the negative results. I was starting to feel like the little boy who cried "Wolf!".
On May 9/08, I felt a lump about an inch to the right of my "shark bite", and on May 13 it was biopsied. (See? I told you Dr. Pace was Johnny-on-the-spot!) He called me on the 19th to say it was negative, but that the pathology reported it as panniculitis. I didn't care what it was, as long it wasn't melanoma! But I had just discovered a similar lump about 2 inches below the first one. As luck would have it, I had my 3-month dermatologist check up with Dr. Clarke on the 21st. She had read the latest path report, and didn't like the way it was worded -- "No definite evidence of melanoma". Plus, she said, something had to be causing this panniculitis, so she would check into it. By the 23rd, Dr. Clarke, Dr. Pace and the pathologist had decided that yes, they should probably investigate further. So on May 29th, I was back in day surgery to have more of the first lump and all of the second lump removed.
Thursday, June 19, 2008 would have been my first anniversary mark of being disease-free, and I was poised for a big celebration. But on June 18th, Dr. Pace called me with the new results -- Positive, both of them!! SH*T!!!! And to make matters worse, the margins were still positive!!! Dr. Pace faxed me the path report.
I called Dr. Giacomantonio right away, and faxed the path report to him. By Friday, his secretary called back with an appointment for a PET scan in Halifax for June 26th. I called the hospital here and got my CT scan moved up to that very day. So Jim and I left on the 25th, stayed with Jeanne and John, and came home on the 29th. I got the PET scan results by Thursday, and it showed no distant mets. THANK GOD!!! The groin area lit up from scar tissue, the knee area lit up from scar tissue and mel cells, and there was a "non-specific" nodule in my medial anterior thigh. Hmmm... I wonder what that could be????
Dr. Giacomantonio had left for a 3 week vacation, and wouldn't be back until mid-July, so I had to wait until he came back. I finally got a call to go see him on July 28, so I flew up for the day. Jim couldn't come with me this time, and Jeanne and John were here in Nfld on vacation, so I was on my own. But as luck would have it, Janet and Steve were in Halifax on gov't business, and were booked to fly home Sunday evening. When they found out I was coming up on Monday, they changed their travel plans and stayed in Halifax an extra day so they could pick me up at the airport, come to the hospital with me, spend the rest of the day doing lots of fun things (shopping, lunch, drinks on a downtown deck, waterfront walk, casino, [I won $80], supper at Steve’s Aunt Mary’s), and flying home with me that night. Isn’t my family just super?!!!
Anyway, here's what was decided when we met with Dr. Giacomantonio. First of all, I will not be having another Isolated Limb Perfusion at this point, and any proposed treatment will be done in St. John's and not in Halifax, all of which I’m quite happy about. Before any treatment can be started, I have to have surgery to remove the section of flesh on my leg where the new tumors were (right next to the section they took last year), and a skin graft, using healthy skin from my good leg. To me, considering what I’ve been through to date, that is a relatively minor procedure, and recovery should be only about a month. However, my surgeon, Dr. Pace is on vacation until Aug 11, and I have an appointment to see him on Aug 12. Then he and Dr. Rideout (plastic surgeon) have to coordinate OR time to do this procedure, so I’d say I’m looking at a good month before anything gets done.
The second phase is a systemic (whole body) treatment, and would be either Interferon or a chemotherapy called DTIC. Which one I do depends on 2 things: whether or not they achieve negative margins in the surgery (ie, get all the cancer cells), and whether or not a 6mm nodule in my thigh that showed up on the PET scan is cancerous.
They won’t do a surgical biopsy on that thigh nodule, as they can’t feel it, so they’d have to open my entire thigh to find it, which is rather radical if it turns out to be nothing. They may possibly be able to do a guided needle biopsy (find the tumor either by CT scan or ultrasound, and use that image to guide the needle to it, extract some fluid from it, and test it for cancer). If they can’t do that here, they wouldn’t send me elsewhere to have it done. It would come down to being just be an educated guess between my oncologist and the radiologist… Do they consider it to be malignant or benign? Given my history, I’m hoping that they’d err on the side of caution and presume it to be a tumor, but that’s not my call. Here are the various scenarios:
Negative margins from surgery + benign thigh nodule = Interferon
Negative margins from surgery + malignant thigh nodule = DTIC
Positive margins from surgery + doesn’t matter if thigh is malignant or benign = DTIC
What is Interferon? Everyone has interferon, which is a molecule that activates the immune system. The immune cells in melanoma patients fail to respond properly to natural interferon, so the cells are less able to fend off the cancer. Taking Interferon as a treatment essentially wakes up the immune system to recognize the cancer cells as foreign, and to fight them off. It’s administered intravenously 5 times a week. The side effects are wicked, (nausea, vomiting, major fatigue, fever and chills, cardiac problems, liver damage, bone marrow toxicity, thyroid dysfunction, etc), but vary in different people, and the response rate is only about 10%. Low, I know, but it’s better than 0%. That treatment would only be for a month, but if the side effects got too bad, I’d come off it before the month was up. Interferon can only be given if there is no evidence of disease.
What is DTIC? It’s a form of chemotherapy. Its real name is Dacarbazine, but it has a derivative called Temozolomide, which can be taken orally, and that’s what I’d be taking. DTIC is generally considered to be the most active single agent in patients with metastatic melanoma with a response rate of 8% to 20%. It is generally well tolerated with “possible” side effects being limited to minor nausea and vomiting. Bone marrow suppression is usually only modest, and alopecia (hair thinning) and fatigue are minimal, allowing most patients to maintain relatively normal function while receiving therapy, which could go on indefinitely. DTIC can only be given if there is measureable active disease present.
So for now, I just sit and wait for August 12 to come,when I see Dr. Pace. In the meantime, I feel and look healthier than I ever did before, I have loads of energy, and if it weren't for this recurrence, I'd be soon getting ready to go back to school. It's funny how I can feel so well, yet know there's a major takeover going on inside my body. Cancer really is such an insidious disease!!!
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