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!!!
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.
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.
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