Tonight, for the first time in over six weeks since my surgery, I sat at the kitchen table and ate supper with my family. I used a cushion for the hard wooden chair. Ever since I got out of the hospital, I've been eating my meals in a lazy-boy or couch in the next room.
I've also emerged from my chemo fog today. On Thursday I spent just over two hours in the hospital being injected with chemicals and then they sent me home with a different chemical bottle on my hip which is piped into my PICC line. The bottle was removed on Saturday and emptied right to the 46 hour mark.
Thursday, Friday, Saturday, Sunday and Monday were hard days. Tuesday, I emerged from the side effects but I was very groggy. This morning I was feeling good enough to go for a slow 2 km walk with Erinn and Maggie. I had to lean on Erinn for most of the walk but I didn't need to nap today whereas yesterday I spent most of the day in bed.
I still feel tired but I'm okay if I lie down and read. I'll post more on the chemo later. Here's to a better day tomorrow!
Tuesday 29 May 2012
Wednesday 23 May 2012
PICC Line Installed
What a great weekend. The temperature was around 30C for Sat, Sunday and Monday. These were three great days in the backyard with the kids, family and friends. I've been trying to look at the positive side of things and the only positive side of going through all this cancer treatment in 2012 is the time I have to spend with the kids and Erinn and this May long weekend officially kicked off beautiful summer weather.
My mobility is getting even better. On the weekend I tried sitting in comfy, cushy chairs. I was able to do that for a couple of hours at a time. But, even this morning I ate breakfast sitting upright on the couch and now my tailbone is sore.
I got some bad news on Friday afternoon from the hospital. They answered a question I had the day before. No, I cannot swim with the PICC line. Grrr....
That was really depressing since I'll have the PICC line until September just when all the nice water weather is done. I told Erinn I'd only do two chemo sessions and then by late June I'll switch to the chemo pills. That created a bit of tension.
You see, the PICC line is limiting enough as it is. It's basically a hose inserted into a vein in my right bicep that follows its way about 1mm shy of my heart. The reason for this is to distribute the chemo and keep my veins safe as the chemo rots my veins. The chemicals will be instantly diluted when they're ejected right beside my heart and then distributed throughout my body. Because of this, I cannot move my right arm repetitively. In January I was told I could not shovel the driveway or do other repetetive motions regardless of the weight for fear the PICC line moving inside me. Now that it's summer, that would mean paddling or doing weights or lots of swimming. Of course, due to the surgery, I can't lift a goddamn thing until July anyhow.
Later that day we found out there are options. I can have a Port surgically implanted in my chest. It looks like this was the common way to get your chemo treatment until the PICC came along. The nurse explained that it is surgery and it'll be low priority surgery to have the port removed so it may take 6 months to have it removed once I'm done with it. I said put me on the waiting list to have the Port installed and I'll do the first two treatments by PICC line.
Also, in looking on the internet, we found some products that wrap around my arm to protect the PICC dressing for swimming.
So, yesterday, I got my PICC line installed. The nurse there was very helpful and explained that I'm getting a new-technology polyeurathane PICC line. She said I only had the old type of PICC line for one week back in January so I didn't really have it long enough to realize the drawbacks. It would break inside people's bodies after it's been installed. Sounds like a drawback.
The states have been using this new polyeurathane PICC for years but, due to tendering, it has just come to the Ottawa General Hospital the last two weeks. She also explained that I don't need to worry about the PICC line moving due to arm motions anymore so I should be okay paddling but I probably can't do weights because my arm will get very sore very early. Well, that was encouraging to hear. I can listen to my body and stop when I'm sore but I was always worried about having the PICC line move inside me and I wouldn't be aware of it.
So, the PICC line is in and we've ordered an arm wrap from the states to enable swimming.
Tomorrow, I go to the Ottawa General Hospital for my first chemo treatment. The first of eight biweekly. I'll be scratching each one off the calendar.
My mobility is getting even better. On the weekend I tried sitting in comfy, cushy chairs. I was able to do that for a couple of hours at a time. But, even this morning I ate breakfast sitting upright on the couch and now my tailbone is sore.
I got some bad news on Friday afternoon from the hospital. They answered a question I had the day before. No, I cannot swim with the PICC line. Grrr....
That was really depressing since I'll have the PICC line until September just when all the nice water weather is done. I told Erinn I'd only do two chemo sessions and then by late June I'll switch to the chemo pills. That created a bit of tension.
You see, the PICC line is limiting enough as it is. It's basically a hose inserted into a vein in my right bicep that follows its way about 1mm shy of my heart. The reason for this is to distribute the chemo and keep my veins safe as the chemo rots my veins. The chemicals will be instantly diluted when they're ejected right beside my heart and then distributed throughout my body. Because of this, I cannot move my right arm repetitively. In January I was told I could not shovel the driveway or do other repetetive motions regardless of the weight for fear the PICC line moving inside me. Now that it's summer, that would mean paddling or doing weights or lots of swimming. Of course, due to the surgery, I can't lift a goddamn thing until July anyhow.
Later that day we found out there are options. I can have a Port surgically implanted in my chest. It looks like this was the common way to get your chemo treatment until the PICC came along. The nurse explained that it is surgery and it'll be low priority surgery to have the port removed so it may take 6 months to have it removed once I'm done with it. I said put me on the waiting list to have the Port installed and I'll do the first two treatments by PICC line.
Also, in looking on the internet, we found some products that wrap around my arm to protect the PICC dressing for swimming.
So, yesterday, I got my PICC line installed. The nurse there was very helpful and explained that I'm getting a new-technology polyeurathane PICC line. She said I only had the old type of PICC line for one week back in January so I didn't really have it long enough to realize the drawbacks. It would break inside people's bodies after it's been installed. Sounds like a drawback.
The states have been using this new polyeurathane PICC for years but, due to tendering, it has just come to the Ottawa General Hospital the last two weeks. She also explained that I don't need to worry about the PICC line moving due to arm motions anymore so I should be okay paddling but I probably can't do weights because my arm will get very sore very early. Well, that was encouraging to hear. I can listen to my body and stop when I'm sore but I was always worried about having the PICC line move inside me and I wouldn't be aware of it.
 |
| On the May long weekend, about a dozen to 20 of us head off to Vermont from Ottawa. I had probably been about five times in a row until I started racing a lot in 2000 to 2009. I went again in 2010 then 2011 knowing I would go every year thereafter. Of course, cancer puts your life on hold. My motorcycles have been parked since the April surgery because I can't sit on them. I'll go again in 2013. Mind you, it was so swelteringly hot that being by the pool with the kids all weekend was a great consolation prize. |
So, the PICC line is in and we've ordered an arm wrap from the states to enable swimming.
Tomorrow, I go to the Ottawa General Hospital for my first chemo treatment. The first of eight biweekly. I'll be scratching each one off the calendar.
Thursday 17 May 2012
Clear the Roads---I'm DRIVING!!!
And the roads are so much wider now that I've started using front lawns and sidewalks as well.
Yep, I've turned a corner. It's been nearly a week now that I've been able to stand and walk around without feeling faint. This is good. I still can't sit in a chair but yesterday I tried driving and I found that sitting in the driver's seat was way easier than sitting in a chair. I can support a lot of my weight with my thighs and my right arm on the arm console. It's pretty much perfect although I haven't gone beyond Orleans. A long driving trip for me might be to drive into Ottawa and we ain't ready for that yet.
I also tied my own shoes just today. It was a bit of a stretch but Erinn wasn't around to tie my shoes. What was I to do? Thankfully, she had already put my socks on for me that morning.
The walking has become easier and, due to time constraints, I'm only doing one 2-3 km walk. That's plenty. My bowels are working fine now (I had about four rough days after the sleepless popcorn night) and I'm getting used to things. I've started introducing whole wheat bread and so far no pain. I eat an orange every morning and I may venture into more fresh fruit territory soon. Although, I'm cautious. Everything I ate after the popcorn caused me a lot of pain so I don't want to overload on fruit right away but I sure miss it. As a vegetarian, I've become pretty sick of white bread and eggs.
For Father's Day, I hope to be able to sit in a chair.
Yep, I've turned a corner. It's been nearly a week now that I've been able to stand and walk around without feeling faint. This is good. I still can't sit in a chair but yesterday I tried driving and I found that sitting in the driver's seat was way easier than sitting in a chair. I can support a lot of my weight with my thighs and my right arm on the arm console. It's pretty much perfect although I haven't gone beyond Orleans. A long driving trip for me might be to drive into Ottawa and we ain't ready for that yet.
I also tied my own shoes just today. It was a bit of a stretch but Erinn wasn't around to tie my shoes. What was I to do? Thankfully, she had already put my socks on for me that morning.
The walking has become easier and, due to time constraints, I'm only doing one 2-3 km walk. That's plenty. My bowels are working fine now (I had about four rough days after the sleepless popcorn night) and I'm getting used to things. I've started introducing whole wheat bread and so far no pain. I eat an orange every morning and I may venture into more fresh fruit territory soon. Although, I'm cautious. Everything I ate after the popcorn caused me a lot of pain so I don't want to overload on fruit right away but I sure miss it. As a vegetarian, I've become pretty sick of white bread and eggs.
For Father's Day, I hope to be able to sit in a chair.
 |
| My in-laws were over last week to open our pool. It was greatly appreciated. Just in one week my mobility has greatly improved. I still can't lift anything but I can walk without fainting. We've had sunny days but I won't turn on the pool heater until our overnight lows are in double digits. Of course, that didn't slow down Kate and Maggie who each took turns running down the steps up to their shoulders in 59F (15C) water and then shrieking about how cold it was. This weekend looks great. Time to fire up the heat! |
Sunday 13 May 2012
Happy Mother's Day
It's been four weeks since I had the surgery and I'm definitely feeling much better. Now I understand what the surgeon meant when he said it'll take 3 months to heal up from it. I still can't put my own socks on or tie my shoes but now, with the nicer weather, I skip the socks and I can do up the velcro on my sandals so I'm pretty much self-sufficient. I still can't sit which also means I can't drive but maybe we'll have some progress on that in the next couple of weeks.
Last week my JP Drain was removed as were the sutures on my backside. What a relief. I feel more human. Just having the JP Drain removed was a blessing. Plus, two days ago was the first time I was able to walk around without feeling faint or light-headed. I may have turned a corner.
I've also stopped losing weight. I've lost 14 lbs in the last four weeks. I'd be happier if it was 20 lbs but I was feeling pretty faint so I'm just as happy to stop here.
I got a voicemail that my chemo will start May 23rd. I'll go into the hospital and they'll inject me for hours then hook me up to a bottle. I'll wear the bottle for 48 hrs at a time in two week rotations. I understand it'll tire me out for one week out of every two weeks but I hope that one week of tiring me out is really only 4 days. That'll mean 10 days of feeling okay. The chemo is only 8 treatments (4 months) so I should wrap up around Sept 1st, barring any illness or a low white blood cell count. I'd be pretty lucky if I was healthy on those counts so I expect the chemo might not end as per that schedule. It may get bumped out a few weeks.
The kids are waiting downstairs with gifts for mommy. I think they understood not to wake Mommy this morning.
It's 11 am and Erinn is still sleeping. I'd say I've done well on giving her what she wants this Mother's Day.
P.S. Today is also our 17th wedding anniversary. We did nothing to celebrate it but we had a fantastic day in the backyard in the sun with the kids. Nice, warm 24 C day.
Last week my JP Drain was removed as were the sutures on my backside. What a relief. I feel more human. Just having the JP Drain removed was a blessing. Plus, two days ago was the first time I was able to walk around without feeling faint or light-headed. I may have turned a corner.
I've also stopped losing weight. I've lost 14 lbs in the last four weeks. I'd be happier if it was 20 lbs but I was feeling pretty faint so I'm just as happy to stop here.
I got a voicemail that my chemo will start May 23rd. I'll go into the hospital and they'll inject me for hours then hook me up to a bottle. I'll wear the bottle for 48 hrs at a time in two week rotations. I understand it'll tire me out for one week out of every two weeks but I hope that one week of tiring me out is really only 4 days. That'll mean 10 days of feeling okay. The chemo is only 8 treatments (4 months) so I should wrap up around Sept 1st, barring any illness or a low white blood cell count. I'd be pretty lucky if I was healthy on those counts so I expect the chemo might not end as per that schedule. It may get bumped out a few weeks.
 |
| Erinn took us to M&M Meat Shop yesterday for their annual Crohn's and Colitis fundraiser BBQ. 100% of all money collected (collected, not raised) goes to fight Crohn's. Our dear friend Shannon has suffered from Crohn's since she was a teenager. Hey, they even had veggie burgers and veggie dogs! http://www.mmmeatshops.com/en/aboutmm/donations.asp |
The kids are waiting downstairs with gifts for mommy. I think they understood not to wake Mommy this morning.
It's 11 am and Erinn is still sleeping. I'd say I've done well on giving her what she wants this Mother's Day.
P.S. Today is also our 17th wedding anniversary. We did nothing to celebrate it but we had a fantastic day in the backyard in the sun with the kids. Nice, warm 24 C day.
Thursday 3 May 2012
Surgery Cancer Results
I got some good news yesterday. We had two medical appointments which made it the busiest day of my life since I got out of the hospital nearly two weeks ago. In the morning, we saw Dr. Goodwin, my chemo oncologist. She let us know that the pathology reports from the surgery showed no cancer remaining in the parts that were removed from me. That's good news as it puts my survival rate at 85 to 88%.
When I was in the hospital, my surgeon visited me daily (including weekends) and I was asking him about this pathology report. I asked if the report came back all clear, would my chemo plan change to something much lighter? He explained that because I was young and healthy, I would get hammered as hard as they could to kill any potential stray cancer cells without killing me. Oh yay.
To bump up my success rate even more, I will be going on the chemo bottle for a couple of days in a row in two week rotations. It will be Folfax and it's much more potent than the pills I was taking in January and February (Xeloda). I will have a PICC line inserted into my bicep again to feed the chemicals to my heart (it stops about 1 cm shy of the heart) for distribution. As noted before, the PICC line is necessary since these chemicals destroy veins. They get dumped adjacent the heart from the PICC line where they are diluted in a lot of blood and the heart immediately distributes the Folfax throughout my body.
All this is done to increase my survival rate by another 2 to 3%.
The drawback is the side effects. Many side effects are temporary but some are permanent. I see death listed. I'm going to ask if that's a temporary side effect.
 |
Death by Popcorn. I'm on a low residue diet which means no fresh fruit, no whole wheat and no fibre.
The night before my appointments, a friend came over and he brought some snacks. I didn't realize popcorn
was full of fibre. I probably ate 1/4 of the bag. Well, a few hours later, I stayed awake in bed as my bowels did
painful sommersaults. It was agonizing and I only slept about three hours all night. For my morning appointment, I asked for a hospital bed and I writhed in pain during half the debrief from the chemo doctor as my bowels passed the last of the popcorn. Ugghhh... |
The good news is a lot of these side effects appear in the 5 to 6 month treatment time period so they're going to stop me at 4 months. I like the shorter 4 month time period even if it will make be bedridden in two week rotations instead of 3 week rotations. I'll take 4 months and the possibility of minimal side effects any day.
Another side effect I'm worried about is losing feeling in my hands and feet. This temporary side effect can also be permanent and I know one person who has suffered this. My surgeon yesterday afternoon also relayed the info about one of his patients a couple of years ago who also suffered from this and it shattered him. He was a National Arts Centre pianist. I'm sensitive to this as I still don't have restored feeling in my left fingers. They're only about 90% restored from the surgery and it feels really weird. My surgeon says the feeling will come back but it may take another month.
In the afternoon we had a followup with my surgeon, Dr. Weaver. I had to lie on a couch outside the elevators while Erinn waited half an hour in the waiting room for our appointment. It's tough when I can't sit anywhere and standing is not very relaxing. Plus, I was feeling faint and weak all day yesterday due to a flirtation with popcorn torture.
My surgeon is happy with my healing and tells me the JP Drain can come out next week. Great!!!! I get the sutures out of my backside next week by the home care nurses and the drain will follow. It'll be a great week next week. Another week or so after that, I'll start my chemo treatments. May the games begin!!!
Tuesday 1 May 2012
Jackson-Pratt Drain
I still wear the Jackson-Pratt (JP) Drain. Another weird medical thing. I keep it tucked inside my Hugh Hefner leisure pants so the kids won't see it. I thought the hose entered my pelvis through the incision but it took me a whole week to work up the nerve to actually look south of my belly button. I see they drilled another hole through my abdomen and the hose enters my pelvis a few inches to the side of the incision. Yuck.
I lost another four pounds this week while at home. That's surprising cause I no longer exercise. I can stand so I still walk twice a day and I guess that's pushing it because I'm faint when I walk and I have to lie down when I get back. Maybe that's exercise in itself after big surgery like this but it sure isn't anything that would burn any calories. I definitely have noticed that my legs and arms have shrunk dramatically and so have my love handles.
I think I'm losing weight because I'm eating less. In the hospital, I got recalibrated on portion control. When I graduated from ice chips and jello, I was fascinated with the meals I got. They were small but all measured and itemized on the menu receipt that came with the meal. 250 ml of tomato soup, two crackers, one pepper packet, 125 ml of milk, etc. I thought the meals were small but it took me 90 minutes to eat one. I remember reading in a National Geographic how our portions in North America have strayed from the standard. A steak should be the size of a deck of cards. One serving of fruit is the size of a baseball. Wow, try and open a restaurant based on those standards and you'd be out of business in a year!
I'm down 10 lbs since the surgery but that's just getting rid of the fattening up I did to prepare for chemo and radiation. Also, surgery sliced 5 lbs out of me. Funny, I bulked up for chemo and radiation but I didn't lose a single pound during that period. Now, I'm just my usual 10 lbs overweight instead of 20 lbs. I'll try and lose another 10 lbs.
I still feel stronger every day. I mark that by how easy it is to get out of bed and get off the couch/lazy-boy. I still can't sit so I spend a lot of time reading or watching TV or playing Playstation. Pretty sedentary lifestyle. I look forward to sitting so I can be on the computer without kneeling on the floor. It's funny, when I get off the lazy-boy and walk upstairs or to the next room, I almost always have a headrush and then I think that maybe I'm spending too much time laying down.
I also look forward to when I can tie my own shoes. Right now Erinn has to put my socks on me and tie my shoes for my walks. Before the surgery, I could touch my hands flat on the floor. It's amazing how abdominal slicing changes things. I was also told I can't do dishes or load the dishwasher due to twisting motions. And I can't lift or sit so folding laundry is out too. I can watch TV, read and ask Erinn to do things for me. She's a trooper. She does everything for me and serves me my meals on the couch. What a saint! I'd buy her something for Mother's Day but she hasn't given me any money and I can't go anywhere that I can't walk to. Oh well, next time...
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| I'll be done with the JP Drain when it starts collecting 30ml or less of waste fluid per day. So far, I'm double that. Maybe only two more weeks and I won't need it anymore. Fingers crossed. |
I lost another four pounds this week while at home. That's surprising cause I no longer exercise. I can stand so I still walk twice a day and I guess that's pushing it because I'm faint when I walk and I have to lie down when I get back. Maybe that's exercise in itself after big surgery like this but it sure isn't anything that would burn any calories. I definitely have noticed that my legs and arms have shrunk dramatically and so have my love handles.
I think I'm losing weight because I'm eating less. In the hospital, I got recalibrated on portion control. When I graduated from ice chips and jello, I was fascinated with the meals I got. They were small but all measured and itemized on the menu receipt that came with the meal. 250 ml of tomato soup, two crackers, one pepper packet, 125 ml of milk, etc. I thought the meals were small but it took me 90 minutes to eat one. I remember reading in a National Geographic how our portions in North America have strayed from the standard. A steak should be the size of a deck of cards. One serving of fruit is the size of a baseball. Wow, try and open a restaurant based on those standards and you'd be out of business in a year!
I'm down 10 lbs since the surgery but that's just getting rid of the fattening up I did to prepare for chemo and radiation. Also, surgery sliced 5 lbs out of me. Funny, I bulked up for chemo and radiation but I didn't lose a single pound during that period. Now, I'm just my usual 10 lbs overweight instead of 20 lbs. I'll try and lose another 10 lbs.
I still feel stronger every day. I mark that by how easy it is to get out of bed and get off the couch/lazy-boy. I still can't sit so I spend a lot of time reading or watching TV or playing Playstation. Pretty sedentary lifestyle. I look forward to sitting so I can be on the computer without kneeling on the floor. It's funny, when I get off the lazy-boy and walk upstairs or to the next room, I almost always have a headrush and then I think that maybe I'm spending too much time laying down.
I also look forward to when I can tie my own shoes. Right now Erinn has to put my socks on me and tie my shoes for my walks. Before the surgery, I could touch my hands flat on the floor. It's amazing how abdominal slicing changes things. I was also told I can't do dishes or load the dishwasher due to twisting motions. And I can't lift or sit so folding laundry is out too. I can watch TV, read and ask Erinn to do things for me. She's a trooper. She does everything for me and serves me my meals on the couch. What a saint! I'd buy her something for Mother's Day but she hasn't given me any money and I can't go anywhere that I can't walk to. Oh well, next time...
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