We got back from the cottage last night, as is usually the norm for he who doesn't work (Saturday and Sunday getaways only) and our house has been fully cleaned. My mom and older sister spent a good chunk of their weekend moving couches and giving things a proper cleaning at our house. It was a big surprise to us and really appreciated. My bathroom hasn't been that clean in months.
Big thanks to Brenda and my mom. It was a total surprise to us.
On the chemo front, I have a few more days to go and then I can resume taking a reduced quantity of pills for Chemo 4 in an effort to actually complete it. My left thumb is still red and pretty sore when I use it and my feet are sore when I walk on them but they're much better than they were last week when it was actually painful.
Monday, 23 July 2012
Wednesday, 18 July 2012
Chemo 4 On Hold
My feet hurt like hell again this morning and now my left hand with the numb fingertips has turned red and my left thumb hurts like hell when I move it. My doctor phoned me this morning and her instructions were to stop taking the chemo pills for seven days. After seven days if my redness and pain has gone away, I can resume the last seven days at a reduced quantity.
Now, in the evening, my feet and thumb are more pain-free.
I'm taking 5,000 mg of Xeloda daily but now it's reduced to 4,000 mg daily. Fingers crossed that this doesn't cause any more funny side effects. And, hopefully, my left fingertips regain their feeling in the next month.
Now, in the evening, my feet and thumb are more pain-free.
I'm taking 5,000 mg of Xeloda daily but now it's reduced to 4,000 mg daily. Fingers crossed that this doesn't cause any more funny side effects. And, hopefully, my left fingertips regain their feeling in the next month.
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| I like motorcycles. Kevin Lacombe on his new BMW at last weekend's St. Eustache Canadian Superbike Nationals. For six years I enthusiastically raced at the back of the pack at the Nationals. This year I haven't felt good enough to even spectate at one event. Maybe in August... |
Tuesday, 17 July 2012
Chemo 4 Underway
My white blood cell counts rebounded and I got the green light last week to start chemo on the pills. Two milestones here: Chemo 4 marks the halfway point (well, technically, after I'm done the two weeks of pills I'm at halfway for Chemo) and I actually rode my bicycle to Shoppers Drug Mart to pick up the pills. It's only about 3 kms but it's the first time I've ridden my bicycle all year. The surgery I had in April was all in the pelvis area so, despite the fact that I've been bicycle commuting to work for the last two years, I didn't dare get on my bicycle until now. So, on July 10th, three months after my surgery, I was able to ride my bicycle. That's progress.
Last week I had four medical appointments and one scheduled chemo pill pickup on a certain day. That's almost five medical appointments in a week. I've never broken the record of five but I've tied it a few times. Hopefully in August things will be less busy.
I've been feeling good for seven days now. I feel about 75%. It was almost going to be 14 days of feeling good but my first day on the chemo pills were pretty rough. This is like an episode of The Simpsons where the sign of "14 days Accident Free" has to be reset to zero all the time. I think I'm not going to make it to 8 days in a row of feeling good because this morning I woke up with my feet in great pain when I walk. It's on my list of side effects. I have to call my doctor. Thankfully, it only hurts when I walk but it hurts like hell.
Last week I had four medical appointments and one scheduled chemo pill pickup on a certain day. That's almost five medical appointments in a week. I've never broken the record of five but I've tied it a few times. Hopefully in August things will be less busy.
I've been feeling good for seven days now. I feel about 75%. It was almost going to be 14 days of feeling good but my first day on the chemo pills were pretty rough. This is like an episode of The Simpsons where the sign of "14 days Accident Free" has to be reset to zero all the time. I think I'm not going to make it to 8 days in a row of feeling good because this morning I woke up with my feet in great pain when I walk. It's on my list of side effects. I have to call my doctor. Thankfully, it only hurts when I walk but it hurts like hell.
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| We spent another weekend at the cottage and, because I had been feeling good for a few days in a row, I talked Erinn into staying there alone. She's really enjoying it. I'm at home with both kids. |
Wednesday, 4 July 2012
I Flunked the Blood Test
I guess I didn't study enough.
I went into the hospital yesterday for my 4th chemo infusion. That marks the halfway point for chemo and a bit of a milestone for me. I had really been looking forward to this infusion just because of the milestone. Well, they made me run downstairs and repeat my bloodwork from the previous Friday because my white blood cell count was too low. Two hours later, they let me know my white blood cell count was still too low. The good news is my white blood cell count is 1.4 and they need 1.5. I don't know what the units of measure are but that sounded pretty close to me. They sent me home and said we'd give it a week so I go into a blood clinic next Monday to repeat the test.
Last week I found out I got approved for the pills at 100% expense coverage. That's great news as it means I don't need future infusions. So, based on this and failing the blood test, I asked the nurse if I could get this PICC line removed. No. Really? Next week's infusion will be this bottle. Odd, I should start the pills next time, not the bottle. The bottle is on your chart so we'll keep it that way. Bummer, I was really looking forward to swimming with the kids.
So, when two time Canadian Superbike champ Francis Martin was told by 4 out of 5 doctors that he shouldn't race with that broken pelvis, what did he do? He consulted a 5th doctor.
I got home and phoned the hospital. I got a different nurse and an appointment to have the PICC line removed...the next day. I will have it out in an hour. Tee hee!!!
So, due to this delay and the three week rotation on the pills, my chemo will now end in early October 2012. That'll make it a full ten months of cancer treatment in 2012. A year to remember.
Having said that, I feel I'm nearing the finish line. I have a lot of crap days on the chemo but October is just around the corner considering it's been cancer fun since mid November 2011. Lots of uncomfortable tests in November and December with radiation-burn-your-ass treatment starting in January 2012. And, hey, nothing can be as bad as that goddamned surgery in April. Two weeks ago I started putting on my own socks but my pelvis is still numb.
Maybe at my next post the feeling will be returning in my left fingers. I haven't felt those fingertips since this began about eight weeks ago. Thankfully, the feeling returned in my right fingers.
I went into the hospital yesterday for my 4th chemo infusion. That marks the halfway point for chemo and a bit of a milestone for me. I had really been looking forward to this infusion just because of the milestone. Well, they made me run downstairs and repeat my bloodwork from the previous Friday because my white blood cell count was too low. Two hours later, they let me know my white blood cell count was still too low. The good news is my white blood cell count is 1.4 and they need 1.5. I don't know what the units of measure are but that sounded pretty close to me. They sent me home and said we'd give it a week so I go into a blood clinic next Monday to repeat the test.
Last week I found out I got approved for the pills at 100% expense coverage. That's great news as it means I don't need future infusions. So, based on this and failing the blood test, I asked the nurse if I could get this PICC line removed. No. Really? Next week's infusion will be this bottle. Odd, I should start the pills next time, not the bottle. The bottle is on your chart so we'll keep it that way. Bummer, I was really looking forward to swimming with the kids.
So, when two time Canadian Superbike champ Francis Martin was told by 4 out of 5 doctors that he shouldn't race with that broken pelvis, what did he do? He consulted a 5th doctor.
I got home and phoned the hospital. I got a different nurse and an appointment to have the PICC line removed...the next day. I will have it out in an hour. Tee hee!!!
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| Kate, Maggie and Grandpa. We had a great July 1st weekend at the cottage. Odd that the guy who doesn't work was only able to attend for the weekend. My medical obiligations during the week pretty much snooker me for making the most of my time off work. Cancer is my new job. |
So, due to this delay and the three week rotation on the pills, my chemo will now end in early October 2012. That'll make it a full ten months of cancer treatment in 2012. A year to remember.
Having said that, I feel I'm nearing the finish line. I have a lot of crap days on the chemo but October is just around the corner considering it's been cancer fun since mid November 2011. Lots of uncomfortable tests in November and December with radiation-burn-your-ass treatment starting in January 2012. And, hey, nothing can be as bad as that goddamned surgery in April. Two weeks ago I started putting on my own socks but my pelvis is still numb.
Maybe at my next post the feeling will be returning in my left fingers. I haven't felt those fingertips since this began about eight weeks ago. Thankfully, the feeling returned in my right fingers.
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| This is the PICC line that enters my bicep and stops about 1 cm short of my heart. I used to get my chemo treatments through this PICC line. Essentially, it's a small hose that acts to protect my veins as the chemo is injected. Chemo rots a lot of stuff, including my veins. I can't get it wet. I cover it in the shower. I have seven large medical supply boxes at home to simply deal with the PICC line. It comes out in an hour. Good riddance. |
Thursday, 28 June 2012
Chemo 3 Sucks Rocks
Chemo 3 hit me hard. The dose didn't increase at all but I'm feeling the cumulative effects of the chemotherapy. I was in bed for 16 to 18 hrs per day for five days straight on my 3rd chemo treatment. Plus, instead of not being able to feel my fingertips on my left hand, all the fingers on my left hand started going numb and the fingers on my right hand started going numb a few days ago which was about 7 days after the start of chemo 3. Throw in a few bouts of diarrhea in the wee hours of the morning and it made for an all around miserable time.
Here it is nine days after the start of chemo 3 and I'm well rested and I feel 70%. Pretty darned good. The feeling in all my fingers is starting to return.
We had an appointment with Dr. Goodwin, my chemo doctor, yesterday and after I described my symptoms she immediately piped up that we were stopping the oxaliplatin. Yay!!! She's worried about permanent nerve damage in my fingers and it obviously is way too much for me. I shouldn't be in bed for five days straight. I should feel tired and need to nap for 1 hr each day but that's the extent.
So, now that I'm ditching the ox next week it also means I don't need injections of calcium and magnesium for one hour which were to counteract the neuropathic effects of the ox. The main drug now will just be the fluorouracil (5-FU as it's commonly called) and associated steriods, leucovorin injection and whatever the hell else they jam into me. Instead of the 3.5 hour chemo injection that I had last week, I can expect a brief 1.5 hour injection period at the hospital and then they'll send me home with my bottle of 5-FU hooked up to my hip for 48 hours.
I'm feeling a lot better about this. The news got even better. Because I'm only on the 5-FU, Dr. Goodwin suggested moving me to the pills instead of the bottle. Holy crap, I almost kissed her! That means the PICC line in my bicep could disappear and I won't have restrictions of going into the hospital or being at home to take my chemo. I could just take pills on my own. The pills are capecitabine and, once processed by my liver, acts the same as 5-FU. The goal would be to start these in mid-July for my 5th treatment. I would take these for the four remaining treatments for 14 days straight followed by 7 days of no pills on a three week rotation.
The pills, like the bottle, are expensive. Each treatment would be about $2,500 to $3,000 and this brings it to over $10,000 for my four remaining treatments. My government health insurance covers 80% of my prescriptions so my out of pocket portion would be in the neighbourhood of $2,000. The good news is I've applied for a manufacturer's program which may pay the remaining 20% not covered by my insurance. I'll probably get news on that in a week or so. Interesting that the manufacturer of the pills has a program to pick up 20% of the tab. I see it as a sales gimmick. It allows them to sell more pills at the expense of reducing profit from 300% to 280%.
Here it is nine days after the start of chemo 3 and I'm well rested and I feel 70%. Pretty darned good. The feeling in all my fingers is starting to return.
We had an appointment with Dr. Goodwin, my chemo doctor, yesterday and after I described my symptoms she immediately piped up that we were stopping the oxaliplatin. Yay!!! She's worried about permanent nerve damage in my fingers and it obviously is way too much for me. I shouldn't be in bed for five days straight. I should feel tired and need to nap for 1 hr each day but that's the extent.
So, now that I'm ditching the ox next week it also means I don't need injections of calcium and magnesium for one hour which were to counteract the neuropathic effects of the ox. The main drug now will just be the fluorouracil (5-FU as it's commonly called) and associated steriods, leucovorin injection and whatever the hell else they jam into me. Instead of the 3.5 hour chemo injection that I had last week, I can expect a brief 1.5 hour injection period at the hospital and then they'll send me home with my bottle of 5-FU hooked up to my hip for 48 hours.
I'm feeling a lot better about this. The news got even better. Because I'm only on the 5-FU, Dr. Goodwin suggested moving me to the pills instead of the bottle. Holy crap, I almost kissed her! That means the PICC line in my bicep could disappear and I won't have restrictions of going into the hospital or being at home to take my chemo. I could just take pills on my own. The pills are capecitabine and, once processed by my liver, acts the same as 5-FU. The goal would be to start these in mid-July for my 5th treatment. I would take these for the four remaining treatments for 14 days straight followed by 7 days of no pills on a three week rotation.
The pills, like the bottle, are expensive. Each treatment would be about $2,500 to $3,000 and this brings it to over $10,000 for my four remaining treatments. My government health insurance covers 80% of my prescriptions so my out of pocket portion would be in the neighbourhood of $2,000. The good news is I've applied for a manufacturer's program which may pay the remaining 20% not covered by my insurance. I'll probably get news on that in a week or so. Interesting that the manufacturer of the pills has a program to pick up 20% of the tab. I see it as a sales gimmick. It allows them to sell more pills at the expense of reducing profit from 300% to 280%.
Monday, 18 June 2012
3rd Chemo Tomorrow
We just got back from the cottage last night. We've been twice since I last wrote. We're trying to take advantage of the breaks in medical appointments whenever we can and so far the weather has been cooperating. This week I have four days in a row of medical stuff. Pretty typical.
This past week was my good week as the chemo side effects tend to subside after six days. I was feeling good until Friday. We planned to head up that night after Kate's soccer. Then I got sick.
This morning, after bloodwork, we went to an appointment with the urologist. I've never been known to have a bladder of steel but the surgery made it smaller than ever. I'm still healing from the surgery and the radiation and chemo makes it even worse. I'm told most healing will happen over the next two years so I'm glad there's hope. We'll see how things are in another six months.
It's a pain not being able to swim at the cottage. We ordered a swimming sort of wrap thing for my arm but the incision on my ass hasn't fully healed from the surgery. It was nearly healed but the chemo made it worse and it hasn't been able to gain any ground. Due to this I didn't want to expose it to lake water. I'll ask my surgeon on Wednesday if swimming in the saltwater pool at home is okay.
Erinn has been changing my dressing on my ass daily for the last two months now. I affectionately call it "Packing my Fudge". She doesn't find that amusing.
This past week was my good week as the chemo side effects tend to subside after six days. I was feeling good until Friday. We planned to head up that night after Kate's soccer. Then I got sick.
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| This is why I got my chemo moved from Thursday to Tuesday. Kate started playing and we get shafted with Friday night games. Now, with the chemo bottle removed on Thursdays, there's a hope I may be feeling well enough to attend instead of only being able to go every second week (non-chemo weeks). |
When you're on chemo, your immune system is pretty much reduced to zero resistance. Maggie had a runny nose for a few days and then I got a wicked sore throat on Friday and extreme fatigue on Friday afternoon. Instead of packing for the cottage, I slept. Erinn, once again, did all the packing but at least this time I was able to drive. On Saturday at the cottage, I slept some more but by Sunday I had recovered enough to feel 80% which is as good as I've felt in the last many months.
It's a pain not being able to swim at the cottage. We ordered a swimming sort of wrap thing for my arm but the incision on my ass hasn't fully healed from the surgery. It was nearly healed but the chemo made it worse and it hasn't been able to gain any ground. Due to this I didn't want to expose it to lake water. I'll ask my surgeon on Wednesday if swimming in the saltwater pool at home is okay.
Erinn has been changing my dressing on my ass daily for the last two months now. I affectionately call it "Packing my Fudge". She doesn't find that amusing.
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| Myself (#48) and TEAM SHOULDERCHECK friend Alan Burns at my last race which was Shannonville in 2009. The Canadian Superbike season opener kicks off this weekend at Shannonville. Stay glued to your TV sets for the six month tape delay or check out the next day results at http://www.csbk.ca/ |
Saturday, 9 June 2012
Good News
I got two pieces of good news right before my second chemo treatment. First off, I begged my chemo doctor to lower my dose of chemo and, once I described my symptoms, she agreed. Looks like that quantity of drugs for my weight was just too much for my virgin drug-free body to handle. She has lowered my oxaliplatin by 15% and the fluorouracil by 10%. However, to counteract the tingling hands I now get two 30 minute injections of calcium and magnesium. Hmm...sounds so natural like I'm going to a health spa. I'll take cucumbers over my eyes if I can dump the oxaliplatin or fluorouracil.
The bottle came off this morning and, so far, my symptoms of the 2nd chemo are far reduced from the first go-round. I'm not as tired and only my left hand is pins and needles and very temperature sensitive. I've also discovered that lukewarm drinks are really too cold for me to drink as I get a lump in my throat and slight pins and needles in my mouth. I know from last time the temperature sensitivity will wear away in a few days. I'm just glad not to be in bed for five days straight with a sixth day of feeling 50% like last time. I'm optimistic this round will be better.
My chapped lips are much better as well. My appetite is reduced but I feel okay so long as I can nap.
The other good news is my ostomy nurse, who visits twice per week, has declared me free to do the colostomy stuff without her. That's great as it no longer obligates me to be home for her visits twice a week. Now I just have my once a week PICC line visit to either disconnect the bottle or change my dressing. Phew. From three home nurse visits per week to just one!
Because of this, there's an opening in the calendar and tomorrow we're off to the cottage with the kids for three days. Somebody pinch me!
The bottle came off this morning and, so far, my symptoms of the 2nd chemo are far reduced from the first go-round. I'm not as tired and only my left hand is pins and needles and very temperature sensitive. I've also discovered that lukewarm drinks are really too cold for me to drink as I get a lump in my throat and slight pins and needles in my mouth. I know from last time the temperature sensitivity will wear away in a few days. I'm just glad not to be in bed for five days straight with a sixth day of feeling 50% like last time. I'm optimistic this round will be better.
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| Now that I'm on chemo I have to rinse my mouth with Club Soda every four hours until...September. |
My chapped lips are much better as well. My appetite is reduced but I feel okay so long as I can nap.
The other good news is my ostomy nurse, who visits twice per week, has declared me free to do the colostomy stuff without her. That's great as it no longer obligates me to be home for her visits twice a week. Now I just have my once a week PICC line visit to either disconnect the bottle or change my dressing. Phew. From three home nurse visits per week to just one!
Because of this, there's an opening in the calendar and tomorrow we're off to the cottage with the kids for three days. Somebody pinch me!
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