Saturday, 31 December 2011
Wigs (1 of 2)
Although two of three of the places wouldn't allow us to take photos, here are some snaps that Laurie took at the first place we visited. We had a hoot.
Photos that I owe you - PICC
I promised you a photo of my post-PICC arm so you could all share the horror!
Here it is:
Here it is:
AAAHHHH. (Sigh of contentment)
Does it make me a bad person to express: The kids are gone! The kids are gone! and then do a little jig of joy? As we pass from 2011 to 2012 I cannot help but feel that the answer is: not at all!
Being a single parent is truly wonderful but a heck of alot of work. Being a divorced single parent at least has the benefit (hopefully) of having small breaks when the kids visit the other parent. However, being a divorced single parent when the other parent has limitations, can be a roller coaster. For various reasons, for over five months I have not had a break from the kids until last night:) I didn't realize how much I needed the break until they were gone.
Both kids are gone for five whole days and nights. I celebrated by having Laurie over for supper and working on a jigsaw puzzle. Today, I was going to run some errands and paint some walls, but I've decided instead to spend the entire day in my jammies, work on the puzzle, read, watch DVDs and eat cookies and ice cream - for breakfast! Monday I can run errands and paint.
The chemo is leaving me very fatigued already but my hair is still in place. I have been wig shopping with Laurie this week. Sadly, there are no really fun wigs that even come close to looking good on me. They do look awesome on the styrofoam people though. It's been fun and eye opening. The range of services runs the gamut from, "It's a shame it doesn't fit but that's just the way they're made", to "Not to worry about the puffiness back there, I'll custom fit it for you so that we eliminate that problem". There are also places that will give you scalp massages to help stimulate hair re-growth at the end and creams to use yourself. I think this may be a perfect way for mom and I to visit. My scalp is already just a touch sensitive and scalp massages on my soon to be bald pate sounds like Nirvana. Ready mom?
As for the fatigued feeling, it's shockingly like being pregnant. When you're pregnant, there is a little parasite taking over and sucking all the life out of you. That little peanut is the important life form and takes priority. Chemo makes you feel like you've been likewise invaded. It sucks the life out of you, not to support itself but to ensure that it sucks the life out of the cancer as well. I feel sort of continuously hung over. No matter how much water I take in, I'm more likely to feel like I'm drowning than I have to feel that I'm no longer thirsty. My heels have split wide open because they are completely dried out. No matter what I eat, it doesn't taste satisfying - like my taste buds are asleep. It's just a bummer that I don't have the memories of the party that caused me to feel this way. (Notice that I'm not saying "or the joy of expecting a baby" - I have two teenagers - see above)
Anyway, in the grand scheme of things I'm doing great. I can usually accomplish one thing every day and if I need to take more jammies days as the chemo goes on, so be it. Lord knows I'm owed a few hours in bed. I saw an interview with Kathleen Petty from CBC who is going through something similar and she has been reduced to watching day time television. Things will never get that bad around here.:)
Happy New Years everyone. May 2012 be the year that you achieve.
Being a single parent is truly wonderful but a heck of alot of work. Being a divorced single parent at least has the benefit (hopefully) of having small breaks when the kids visit the other parent. However, being a divorced single parent when the other parent has limitations, can be a roller coaster. For various reasons, for over five months I have not had a break from the kids until last night:) I didn't realize how much I needed the break until they were gone.
Both kids are gone for five whole days and nights. I celebrated by having Laurie over for supper and working on a jigsaw puzzle. Today, I was going to run some errands and paint some walls, but I've decided instead to spend the entire day in my jammies, work on the puzzle, read, watch DVDs and eat cookies and ice cream - for breakfast! Monday I can run errands and paint.
The chemo is leaving me very fatigued already but my hair is still in place. I have been wig shopping with Laurie this week. Sadly, there are no really fun wigs that even come close to looking good on me. They do look awesome on the styrofoam people though. It's been fun and eye opening. The range of services runs the gamut from, "It's a shame it doesn't fit but that's just the way they're made", to "Not to worry about the puffiness back there, I'll custom fit it for you so that we eliminate that problem". There are also places that will give you scalp massages to help stimulate hair re-growth at the end and creams to use yourself. I think this may be a perfect way for mom and I to visit. My scalp is already just a touch sensitive and scalp massages on my soon to be bald pate sounds like Nirvana. Ready mom?
As for the fatigued feeling, it's shockingly like being pregnant. When you're pregnant, there is a little parasite taking over and sucking all the life out of you. That little peanut is the important life form and takes priority. Chemo makes you feel like you've been likewise invaded. It sucks the life out of you, not to support itself but to ensure that it sucks the life out of the cancer as well. I feel sort of continuously hung over. No matter how much water I take in, I'm more likely to feel like I'm drowning than I have to feel that I'm no longer thirsty. My heels have split wide open because they are completely dried out. No matter what I eat, it doesn't taste satisfying - like my taste buds are asleep. It's just a bummer that I don't have the memories of the party that caused me to feel this way. (Notice that I'm not saying "or the joy of expecting a baby" - I have two teenagers - see above)
Anyway, in the grand scheme of things I'm doing great. I can usually accomplish one thing every day and if I need to take more jammies days as the chemo goes on, so be it. Lord knows I'm owed a few hours in bed. I saw an interview with Kathleen Petty from CBC who is going through something similar and she has been reduced to watching day time television. Things will never get that bad around here.:)
Happy New Years everyone. May 2012 be the year that you achieve.
Monday, 26 December 2011
Post Chemo Continued
Happy Boxing Day. I hope everyone had a wonderful Christmas celebration. Sorry that I left you all hanging with "Off to Chemo" but I spent a wonderful afterrnoon visiting with Heather and Nicki, Judy, mom and dad instead so I hope that I can be forgiven for the lapse. It's the first year in memory that I haven't spent the entire 24th of December running errands and wrapping until late. It was really nice.
So, now back to the story. After the PICC saga, the nurse who did all the good work and got me all cleaned up picked up all my gear and lead me to bay 6 for treatment. One has the option of either a bed or a chair - and of course I opted for the bed. Any chance to lay down and close my eyes is golden for me. Everything went great. That nurse (whose name I'll have to be sure to get next time) was soon replaced by Kathleen, who seemed to be the head nurse - or at least my head nurse:) Because I have the PICC line they could pump the stuff into me relatively quickly. First I got the red stuff, "A", which makes me pee bright red for a few days (fitting with the season), and then I got the brown stuff, "C", which didn't have any neat side effects.
Most of the time however the nurses were going over the pill regimen with me. This pill with food. These pills 12 hours apart. This pill this day, this pill that day. Injections on these days but not these. This pill if you feel nauseous - don't be a hero - stay in front of the nausea because it's easier to keep it at bay then to get rid of it once it starts - call this number if you need injections for nausea, on and on and on. Thankfully they also provided a chart with pill descriptions, alternate names, and full instructions - all on one handy sheet.
Home Care also came to give me more medical supplies and ensure I have the 24/7 numbers in case I need help at odd hours. I also got a free three month supply of Calcium and Vitamin D!
The pharmacy had questions about my prescriptions - one called for me to take two pills a day for four days - but then limited the script to 6 pills. Also, if a doc signed off on one of the scripts I would be able to get it free of charge from the pharmacy instead of paying over $100 a pop for it. And the lovely Kathleen took care of all of that for me too:)
Finally, Kathleen told me that I could have my blood work done through the PICC line if I came up to the Chemo Centre to have it done. I was surprised to hear this because I presumed that it would be done through the PICC line anywhere in the hospital. The bloodwork needs to be done before meeting with Dr Clemons so he can look at it and do his doctory stuff. I forgot my phone at home so didn't know the time of my next appointment with Clemons. No worries, Kathleen went into the computer, found the time of my appointment, made an appointment for me to have the blood work done there and paged Clemons to find out what type of blood work he wanted done. The federal government could learn alot from the way this Cancer Centre works. No arguing about who leads and whose job is what and who is the client and who is in charge. And talk about efficient! Certainly there is no ambiguity as to who gets the kudos either - the nurses get them all!
In any event, it was not as restful this go around as I had hoped, but it was great. I was warm in my turtle neck (I found one that rolled up easily to access the PICC), my turquoise shawl that all my colleagues will know b/c I kept it in the office with me at all times, my crazy cancer socks and the quilt mom, Elaine and Daphne made for me. I got lots of compliments on the quilt and the shawl. Sadly, no one else in my Bay had anything special with them - just the hospital sheets and blankets. Boring! I got an odd look from the gentleman in the chair beside my bed when I slipped off my shoes and stuck on my bright pink polka-dotted socks, but I gave him my best smile and he turned away to mind his own Ps and Qs.
I was my usual humourous self (tee hee) and at the end of the session I got hugs and kisses from everyone and holiday wishes. Seriously, it's a great place full of awesome people. I hope none of you ever have to be there, but if you do and if my first experience is the norm, it will be as comfortable and supportive as possible.
Oh ya, the Honeyman and Brothers Farr concert at the Blacksheep was alot of fun. I felt pretty good although I was drinking so much water per Kathleen's orders that I thought at one point that I might drown. I think soon there may be a post here of my mom's friend Lynne eating her hat (she didn't think I would make it out that evening:).
UPDATE: mom didn't work the video properly - so no eating of the hat - but here is the hat that mom and Heather made for the eating.....
Christmas was wonderful. I spent the morning at home with the kids and we had a great time. Then I went upstairs for a nap and the kids did a reasonably good job cleaning up. Laurie, her brother Glenn and his buddy James came over around 15:00 (and woke me up:) and we had another round of gift exchanges and then it was time for all six of us to head off to Mom and Dad's for supper with Heather and Nicki. It was great - mom broke out the margaritas (but not the profiteroles) and everyone had a great evening. There was a Blokus tournament to cap it all off. Logan was greatly handicapped with an Aunt who was more interested in sleeping instead of strategizing and a young cousin who was very interested in climbing Logan the Ladder during the play. He did very well on his own however and only seemed to decline when his aunt woke up! The big winners were Sydny and Granny in the first round and Glenn and Grandpa in the second.
Today the kids and I are planning to begin our Harry Potter movie watching marathon as Santa brought us the complete set on Blueray. Normally we would ski as much as possible this week, but mom is not up for that. They won't even notice that I'm napping through half the movies:)
Happy holidays!
So, now back to the story. After the PICC saga, the nurse who did all the good work and got me all cleaned up picked up all my gear and lead me to bay 6 for treatment. One has the option of either a bed or a chair - and of course I opted for the bed. Any chance to lay down and close my eyes is golden for me. Everything went great. That nurse (whose name I'll have to be sure to get next time) was soon replaced by Kathleen, who seemed to be the head nurse - or at least my head nurse:) Because I have the PICC line they could pump the stuff into me relatively quickly. First I got the red stuff, "A", which makes me pee bright red for a few days (fitting with the season), and then I got the brown stuff, "C", which didn't have any neat side effects.
Most of the time however the nurses were going over the pill regimen with me. This pill with food. These pills 12 hours apart. This pill this day, this pill that day. Injections on these days but not these. This pill if you feel nauseous - don't be a hero - stay in front of the nausea because it's easier to keep it at bay then to get rid of it once it starts - call this number if you need injections for nausea, on and on and on. Thankfully they also provided a chart with pill descriptions, alternate names, and full instructions - all on one handy sheet.
Home Care also came to give me more medical supplies and ensure I have the 24/7 numbers in case I need help at odd hours. I also got a free three month supply of Calcium and Vitamin D!
The pharmacy had questions about my prescriptions - one called for me to take two pills a day for four days - but then limited the script to 6 pills. Also, if a doc signed off on one of the scripts I would be able to get it free of charge from the pharmacy instead of paying over $100 a pop for it. And the lovely Kathleen took care of all of that for me too:)
Finally, Kathleen told me that I could have my blood work done through the PICC line if I came up to the Chemo Centre to have it done. I was surprised to hear this because I presumed that it would be done through the PICC line anywhere in the hospital. The bloodwork needs to be done before meeting with Dr Clemons so he can look at it and do his doctory stuff. I forgot my phone at home so didn't know the time of my next appointment with Clemons. No worries, Kathleen went into the computer, found the time of my appointment, made an appointment for me to have the blood work done there and paged Clemons to find out what type of blood work he wanted done. The federal government could learn alot from the way this Cancer Centre works. No arguing about who leads and whose job is what and who is the client and who is in charge. And talk about efficient! Certainly there is no ambiguity as to who gets the kudos either - the nurses get them all!
In any event, it was not as restful this go around as I had hoped, but it was great. I was warm in my turtle neck (I found one that rolled up easily to access the PICC), my turquoise shawl that all my colleagues will know b/c I kept it in the office with me at all times, my crazy cancer socks and the quilt mom, Elaine and Daphne made for me. I got lots of compliments on the quilt and the shawl. Sadly, no one else in my Bay had anything special with them - just the hospital sheets and blankets. Boring! I got an odd look from the gentleman in the chair beside my bed when I slipped off my shoes and stuck on my bright pink polka-dotted socks, but I gave him my best smile and he turned away to mind his own Ps and Qs.
I was my usual humourous self (tee hee) and at the end of the session I got hugs and kisses from everyone and holiday wishes. Seriously, it's a great place full of awesome people. I hope none of you ever have to be there, but if you do and if my first experience is the norm, it will be as comfortable and supportive as possible.
Oh ya, the Honeyman and Brothers Farr concert at the Blacksheep was alot of fun. I felt pretty good although I was drinking so much water per Kathleen's orders that I thought at one point that I might drown. I think soon there may be a post here of my mom's friend Lynne eating her hat (she didn't think I would make it out that evening:).
UPDATE: mom didn't work the video properly - so no eating of the hat - but here is the hat that mom and Heather made for the eating.....
Christmas was wonderful. I spent the morning at home with the kids and we had a great time. Then I went upstairs for a nap and the kids did a reasonably good job cleaning up. Laurie, her brother Glenn and his buddy James came over around 15:00 (and woke me up:) and we had another round of gift exchanges and then it was time for all six of us to head off to Mom and Dad's for supper with Heather and Nicki. It was great - mom broke out the margaritas (but not the profiteroles) and everyone had a great evening. There was a Blokus tournament to cap it all off. Logan was greatly handicapped with an Aunt who was more interested in sleeping instead of strategizing and a young cousin who was very interested in climbing Logan the Ladder during the play. He did very well on his own however and only seemed to decline when his aunt woke up! The big winners were Sydny and Granny in the first round and Glenn and Grandpa in the second.
Today the kids and I are planning to begin our Harry Potter movie watching marathon as Santa brought us the complete set on Blueray. Normally we would ski as much as possible this week, but mom is not up for that. They won't even notice that I'm napping through half the movies:)
Happy holidays!
Saturday, 24 December 2011
Post Chemo
Good morning one and all. Here is the story of my first trip to the General for chemo. I arrived on time (through some traffic miracle because I still had quite a few things to do at home and left a little late) and headed upstairs to the chemo unit. The receptionist met me and asked me whether I had received training on the computerized Interactive Symptom Assessment and Collection (ISAAC) system. Nope! Bummer, because she had no idea how to use it and usually the volunteers were there to show new patients but they were all off due to the holiday. No worries, I blog now so I can figure this out.
I went over to ISAAC, sat down and pressed "Start". So far so good. The system then asked me to swipe my health card. Again, no problem. Then the damn thing asked me for my password. Hmm. There was no option for "Don't have an account with us? Press here to set one up" or "New patient? Set up your password by touching here". Stumped, I entered a password that I would like to use, hoping the system would pop up a screen that says, "That password is not recognized. Are you a new user? Touch here" Nope. It just told me that I didn't have the proper credentials to log in. Back to the reception desk.
"Ah," she said, "I recall receiving an e-mail with the default password a while ago. Let me check." and she started searching her e-mail. My hope was not high. What if her e-mail looked like mine at work? That would mean about 6,000 unread messages in the in-box and about 100 electronic folders to search, totally tens of thousands of e-mails!! I'd be here until Christmas and I haven't made the blueberry muffins yet!! Apparently her e-mail doesn't look anything like mine because she found the e-mail she was looking for in relatively short order and proceeded to scan through it. Sadly, the e-mail did not contain the necessary information. I glanced back at the computer booth and noticed some papers on top of the desk. "Maybe they have the info." I told her and walked back over. Sure enough, taped to the wall of the kiosk was the default password if you are a new user. Now, while this is helpful and I perhaps should have spent more time sitting and searching the walls of the kiosk for the info, in my defence, the walls were covered with various flyers for various goods and services. Also, who buidls a compputer system that doesn't include all the necessary processes - requiring paper to go along with the paperless system?? In any event, it took less than two minutes, once I had all the info, to fill out the form. I was impressed by the paperless system. So far I have been inundated with paper from the hospital. Tons and tons of information on all kinds of things. I can't imagine why they don't just select from a menu everything that applies to my cancer when I first meet the oncologist and then print it all to a CD and just give me that (with an index that's searchable and user-friendly, of course) and stop with all the paper! Sadly, ISAAC let me down again, it's parting words being "Your report is now printing". After all the computer stuff, I had to take the paper in to the chemo nurse, who was sitting at a computer.........
The receptionst had my chemo paperwork but not the bloodwork that I was having done first for the D-sab clinical trial of which I'm now an official member. She called and they said for me to come on back. I keep calling the place "Pathology" which cracks up the receptionst. Apparently the blood sucking unit of the chemo lab is called "Pharmacology". I understand why not "Pathology" but I don't understand why "Pharmacology". In any event, I explained to the receptionist my noun handicap (I never get them right!) and I just got a strange look. I was once told the name of this brain block that I have (I'm assured it's a real thing), but it was a noun, so I forgot it.
I meet a new tech in the blood section and she is pleased to see the bulge of the PICC in my arm(which I looked up and which stands for Peripherally Inserted Central Catheter - which totally explains the half meter of tubing in me). I sat down and rolled up my sleeve and the tech just said, "Uh oh". These are words that should never be uttered by anyone in the medical field, a tatoo artist or a hairdresser. There may be others, but these are the ones that I have encountered in my life. Apparently what I thought was the pink dissinfectant that they used during the PICC insertion seeping into my jacket and all over the bandage was actually blood. In fact, the bandage was huge with dried blood. No question, it needed to be changed. And that sparked what would be quite the debate!
The tech proceeded to take the six vials of blood from the PICC. When I saw how many vials she had I was glad I had prepared food b/c I was sure that I was going to pass out. (Sadly, as it turns out I had left my food and phone at home together on the kitchen counter. Gladly, I didn't feel faint.) She then told the other tech that she was going to change the bandage. "No way" came the reply. "There is a procedure to doing this. We need to get a nurse. We're not trained. I don't think we want to touch this. We should call the PICC team." That caught my attention. Yes, please get a nurse. Yes, please call the PICC team. I didn't say anything, curious as to how this would pan out. The younger tech was keen to prove her mettle, clearly. She told us both that she had changed a PICC dressing at Bruyere when she worked there and at the General while she was a student. If she wanted to give it a try I would let her - until she hurt me of course - and I could always have the chemo nurse check it to make sure that it was done properly. This was not to happen however as the older, extremely sensible tech went to get a nurse. While she was gone I re-assured the younger one not to worry. "The procedures are there to protect you. I'm a dreadfully mean lawyer, so you really do have to be careful. You'll get your training and then you can explore all the disgusting PICC dressings you want." She laughed and in the result was very helpful during the process, always ready with the saline to help un-stick the dressing and getting all the supplies to hand.
My PICC debacle resulted in three nurses and the two techs coming to my rescue. Everyone was circled round. I felt like human carrion. Slowly, gently, and with the aid of much saline, they managed to peel away the putrid dressing. "Ech!", said one of the nurses. "Ech?! You can't say "Ech!". I'm sitting here. I can hear you." She quickly responded, "Not you, just the PICC!" Ha! not helpful! I told her that I was just ribbing her - mostly to keep my mind off the goo that was my arm, but (and I didn't tell her this part) because you shouldn't say "Ech!" in front of the patient!
Eventually, the techs and one of the nurses went for lunch, the Ech nurse went back to her bay and I was left with one lovely nurse who did a fantastic job. There were major blood clots gooing up everything, I was still covered in pink dissinfectant and you should see the bruise! It's even better than the one I got from the unfrozen biopsy that I survived. The biggest irony in this entire saga is that I had no symptoms from the cancer itself, but the medical profession is now trying to kill me. At this rate, there is a slightly higher than de minimis chance that they will succeed. Off to the chemo bay! (Actually, now I am off to run some errands - only medical and not Christmas b/c I'm ready!!! In the result, I'll have to finish this blog a little later - but I'll do it today - promise.
I went over to ISAAC, sat down and pressed "Start". So far so good. The system then asked me to swipe my health card. Again, no problem. Then the damn thing asked me for my password. Hmm. There was no option for "Don't have an account with us? Press here to set one up" or "New patient? Set up your password by touching here". Stumped, I entered a password that I would like to use, hoping the system would pop up a screen that says, "That password is not recognized. Are you a new user? Touch here" Nope. It just told me that I didn't have the proper credentials to log in. Back to the reception desk.
"Ah," she said, "I recall receiving an e-mail with the default password a while ago. Let me check." and she started searching her e-mail. My hope was not high. What if her e-mail looked like mine at work? That would mean about 6,000 unread messages in the in-box and about 100 electronic folders to search, totally tens of thousands of e-mails!! I'd be here until Christmas and I haven't made the blueberry muffins yet!! Apparently her e-mail doesn't look anything like mine because she found the e-mail she was looking for in relatively short order and proceeded to scan through it. Sadly, the e-mail did not contain the necessary information. I glanced back at the computer booth and noticed some papers on top of the desk. "Maybe they have the info." I told her and walked back over. Sure enough, taped to the wall of the kiosk was the default password if you are a new user. Now, while this is helpful and I perhaps should have spent more time sitting and searching the walls of the kiosk for the info, in my defence, the walls were covered with various flyers for various goods and services. Also, who buidls a compputer system that doesn't include all the necessary processes - requiring paper to go along with the paperless system?? In any event, it took less than two minutes, once I had all the info, to fill out the form. I was impressed by the paperless system. So far I have been inundated with paper from the hospital. Tons and tons of information on all kinds of things. I can't imagine why they don't just select from a menu everything that applies to my cancer when I first meet the oncologist and then print it all to a CD and just give me that (with an index that's searchable and user-friendly, of course) and stop with all the paper! Sadly, ISAAC let me down again, it's parting words being "Your report is now printing". After all the computer stuff, I had to take the paper in to the chemo nurse, who was sitting at a computer.........
The receptionst had my chemo paperwork but not the bloodwork that I was having done first for the D-sab clinical trial of which I'm now an official member. She called and they said for me to come on back. I keep calling the place "Pathology" which cracks up the receptionst. Apparently the blood sucking unit of the chemo lab is called "Pharmacology". I understand why not "Pathology" but I don't understand why "Pharmacology". In any event, I explained to the receptionist my noun handicap (I never get them right!) and I just got a strange look. I was once told the name of this brain block that I have (I'm assured it's a real thing), but it was a noun, so I forgot it.
I meet a new tech in the blood section and she is pleased to see the bulge of the PICC in my arm(which I looked up and which stands for Peripherally Inserted Central Catheter - which totally explains the half meter of tubing in me). I sat down and rolled up my sleeve and the tech just said, "Uh oh". These are words that should never be uttered by anyone in the medical field, a tatoo artist or a hairdresser. There may be others, but these are the ones that I have encountered in my life. Apparently what I thought was the pink dissinfectant that they used during the PICC insertion seeping into my jacket and all over the bandage was actually blood. In fact, the bandage was huge with dried blood. No question, it needed to be changed. And that sparked what would be quite the debate!
The tech proceeded to take the six vials of blood from the PICC. When I saw how many vials she had I was glad I had prepared food b/c I was sure that I was going to pass out. (Sadly, as it turns out I had left my food and phone at home together on the kitchen counter. Gladly, I didn't feel faint.) She then told the other tech that she was going to change the bandage. "No way" came the reply. "There is a procedure to doing this. We need to get a nurse. We're not trained. I don't think we want to touch this. We should call the PICC team." That caught my attention. Yes, please get a nurse. Yes, please call the PICC team. I didn't say anything, curious as to how this would pan out. The younger tech was keen to prove her mettle, clearly. She told us both that she had changed a PICC dressing at Bruyere when she worked there and at the General while she was a student. If she wanted to give it a try I would let her - until she hurt me of course - and I could always have the chemo nurse check it to make sure that it was done properly. This was not to happen however as the older, extremely sensible tech went to get a nurse. While she was gone I re-assured the younger one not to worry. "The procedures are there to protect you. I'm a dreadfully mean lawyer, so you really do have to be careful. You'll get your training and then you can explore all the disgusting PICC dressings you want." She laughed and in the result was very helpful during the process, always ready with the saline to help un-stick the dressing and getting all the supplies to hand.
My PICC debacle resulted in three nurses and the two techs coming to my rescue. Everyone was circled round. I felt like human carrion. Slowly, gently, and with the aid of much saline, they managed to peel away the putrid dressing. "Ech!", said one of the nurses. "Ech?! You can't say "Ech!". I'm sitting here. I can hear you." She quickly responded, "Not you, just the PICC!" Ha! not helpful! I told her that I was just ribbing her - mostly to keep my mind off the goo that was my arm, but (and I didn't tell her this part) because you shouldn't say "Ech!" in front of the patient!
Eventually, the techs and one of the nurses went for lunch, the Ech nurse went back to her bay and I was left with one lovely nurse who did a fantastic job. There were major blood clots gooing up everything, I was still covered in pink dissinfectant and you should see the bruise! It's even better than the one I got from the unfrozen biopsy that I survived. The biggest irony in this entire saga is that I had no symptoms from the cancer itself, but the medical profession is now trying to kill me. At this rate, there is a slightly higher than de minimis chance that they will succeed. Off to the chemo bay! (Actually, now I am off to run some errands - only medical and not Christmas b/c I'm ready!!! In the result, I'll have to finish this blog a little later - but I'll do it today - promise.
Thursday, 22 December 2011
'Twas the Night Before Chemo
Thanks to help from Laurie, the gifts are all wrapped, I have a tortiere in the freezer for Christmas Eve with the kids, the tree is up (at least until I go to bed and the cats take it down. Again.)and the house is in relatively good order. I think I'm ready.
The PICC (not spelled with "Q"!) went in today. Relatively uneventful procedure but it has left me with a swollen and rather irritated left arm - which is covered pink from my elbow to my shoulder. At least they provided me with a sleeve so that I can still take showers and it is moderately less disgusting than the drain. Can you believe that they put almost half a meter of tubing into me? 44 cm (just over 17 inches) of little blue stuff all the way to the other side of my heart from my left arm! Truly incredible. I only got nervous when they told me they were taking ultra sound of my neck to make sure the tube didn't take a left at Albuquerque (a la Bugs Bunny). That weirded me out.
Mom dropped off a beautiful quilt today that will help to keep me warm tomorrow and all the sessions following. Thanks to Elaine, Daphne and Alice for working on it with mother. It is very beautiful and bright and warm and I know that I will be very thankful to have it with me. Also going to chemo tomorrow are LA's crazy cancer socks and all the good karma that you have all sent my way. Apparently I can bring in my laptop so if they have the wireless running I'll try to post from there.
Needing sleep now in prep for the big day. Love to everyone. See you on the other side:)
The PICC (not spelled with "Q"!) went in today. Relatively uneventful procedure but it has left me with a swollen and rather irritated left arm - which is covered pink from my elbow to my shoulder. At least they provided me with a sleeve so that I can still take showers and it is moderately less disgusting than the drain. Can you believe that they put almost half a meter of tubing into me? 44 cm (just over 17 inches) of little blue stuff all the way to the other side of my heart from my left arm! Truly incredible. I only got nervous when they told me they were taking ultra sound of my neck to make sure the tube didn't take a left at Albuquerque (a la Bugs Bunny). That weirded me out.
Mom dropped off a beautiful quilt today that will help to keep me warm tomorrow and all the sessions following. Thanks to Elaine, Daphne and Alice for working on it with mother. It is very beautiful and bright and warm and I know that I will be very thankful to have it with me. Also going to chemo tomorrow are LA's crazy cancer socks and all the good karma that you have all sent my way. Apparently I can bring in my laptop so if they have the wireless running I'll try to post from there.
Needing sleep now in prep for the big day. Love to everyone. See you on the other side:)
Saturday, 17 December 2011
Totally Bland Update
Good morning!
Just to ensure you that you are missing nothing from my adventure, here is a little update.
This week I have been injected with dyes and nuclear gunk. Some people at the hospital could access my veins, some couldn't. I had needles in my hand and all over my one good blood draining arm. I drank iodine. I was scanned from tip to toes. I had a full body bone scan and then separate ones for my hands and elbows???!!! I had a CT scan - I have no idea what they were looking at. I held my breath when I was told to. I didn't move when I was told not to. I couldn't nap during my bone scan because I was a bad patient and I forgot to fill out the questionaire beforehand so Derek had to read me the questions and write down my answers during the scan. Haviing missed a nap, I'll never do that again!
I did the last blood test to see if I qualify to be in the Dynosamab (???) clinical trials. D-mab is a drug used for osteoporosis. Apparently breast cancer most frequently spreads to the bones. They are hoping to show that D-mab prevents such a spread. I won't know whether I'm taking D-mab or a placebo - but it's 50/50 so well worth it. If at any point they collect enough evidence to show D-mab is helping then everyone gets moved over to D-mab.
That's it - that was the week. Next week I have a muga and cancer school and then Friday is the big chemo day. I've already bought a ticket to a concert at the Black Sheep Inn on Friday, so I'm hoping that all the drugs they have me taking will ensure that I'm feeling up to it.
Enjoy the last week before Christmas!
Just to ensure you that you are missing nothing from my adventure, here is a little update.
This week I have been injected with dyes and nuclear gunk. Some people at the hospital could access my veins, some couldn't. I had needles in my hand and all over my one good blood draining arm. I drank iodine. I was scanned from tip to toes. I had a full body bone scan and then separate ones for my hands and elbows???!!! I had a CT scan - I have no idea what they were looking at. I held my breath when I was told to. I didn't move when I was told not to. I couldn't nap during my bone scan because I was a bad patient and I forgot to fill out the questionaire beforehand so Derek had to read me the questions and write down my answers during the scan. Haviing missed a nap, I'll never do that again!
I did the last blood test to see if I qualify to be in the Dynosamab (???) clinical trials. D-mab is a drug used for osteoporosis. Apparently breast cancer most frequently spreads to the bones. They are hoping to show that D-mab prevents such a spread. I won't know whether I'm taking D-mab or a placebo - but it's 50/50 so well worth it. If at any point they collect enough evidence to show D-mab is helping then everyone gets moved over to D-mab.
That's it - that was the week. Next week I have a muga and cancer school and then Friday is the big chemo day. I've already bought a ticket to a concert at the Black Sheep Inn on Friday, so I'm hoping that all the drugs they have me taking will ensure that I'm feeling up to it.
Enjoy the last week before Christmas!
Tuesday, 13 December 2011
'Tis the Season (For Nuclear Medicine)
Apparently there have been rumblings that I am not blogging sufficiently to satiate the audience. For that I apologize. I have been running around trying to get insurance paperwork completed, Christmas organized, Christmas baking, re-upholster all the furnishings I got from my grandparents twenty years ago, having a wall built and a new doorway installed, Christmas baking, creating a raffle basket for Sydny's Christmas water show (which was a success) and trying to get an IKEA wall unit built - with all the right pieces in the right place - oh and moving my fridge and installing a broom closet in the kitchen. Phew, I'm tired just writing it all down. Top all of that off with the fact that I'm so tired I am only working at about a quarter of my former capacity and you can understand how the hours to blog are few.
I will make it up to you today however. Alot has happened since the last blog so make a cuppa (pause while I go and do the same), get comfortable and read on.
The day after the call booking me with Dr. Dent, I received a call that there had been a cancelation and was I available to come in on Friday, the 9th to see Dr Mark Clemons. Sure. The name meant nothing to me and I was only lukewarm over Dent. My sister knew her and says she would certainly see her, although she is rather aloof. I heard stories about test results not being delivered to patients and problems with her staff however. Also, I looked on-line and there was a very low rating with her with similar complaints. With my sister's assurances of competence however, I wasn't going to rock the boat - I would just have to work harder to make her laugh. So, sure, I'll switch to this Clemons guy, why not?
Man, did I luck out. If you look this guy up on line you get nothing but rave reviews. Also, a friend of the family had some experience with him and praised him highly. So great, I've now gone from the 22nd to the 9th and from an okay doc to a great one.
I truck off the hospital for the appointed time (note: Clemons is lovely but runs way late) and run into a beloved former client and her mom who are there - her mom is undergoing the same thing I am. It was great to have a chance to speak with them about the process and see someone who is way further along in the process than I am and still in great spirits and doing well. Bonus that the doc runs late too:)
About forty minutes after my scheduled appointment time, I'm ushered into an exam room by the lovely Hazel. We go over the forms (that I luckily had received just that morning in the mail and managed to complete despite the dust being kicked up everywhere by my contractor, the fact that I had to become a "contractor's assistant" to get the door hung and the crew working in the front room trying to figure out an IKEA wall unit). I ask about the fatigue and burn out that I was experiencing this summer. Is it possible, I want to know, that I was just experiencing some of the symptoms of my cancer. No, is the unequivocal reply. My cancer was caught too early for me to have been having symptoms. While it is still just a working theory, the current view of cancer among the specialists is that it is caused by stress. In lay terms, everyone has cells in their bodies that could become cancerous. The body's immune system takes care of them and prevents cancer from occurring. However, when we are stressed, the immune system is suppressed and the cancer takes root and grows. What Hazel found surprising was the number of years that I lasted at my job before I developed cancer. Someone please take this to my ADM and DM and make sure that they know what I took for the team!
I change into the required gown and in comes Clemons. Very British, younger than I expected and with a slight lisp - I think. Anyway, I didn't understand a thing he said for about the first ten minutes. After the exam we sit down to go over everything. I take out my pen and paper and he grabs it away from me. "What will I do if you make your own notes?" he asks. "I'm going to write down everything you need to know. But my handwriting is terrible so I hope you can read it!" Seriously? So we compromise. I tell him I won't write (I've already lost my pen and paper so this isn't much of a concession on my part) but if I can't read his writing and answer my family's questions, I'm going to send in my mother, sister and aunt and he can explain it all to them. He agrees, but only because he doesn't fully appreciate the enormity of what I've just proposed. One day he might.
Apparently, there was no patient who cancelled so I could have this spot. Clemons was supposed to be at some World Breast Cancer Conference but, the plane out of Ottawa being fully loaded, the flight attendant collapsed and was taken away in an ambulance. (Hopefully she's fully recovered) Having missed his connecting flight, the good doctor decided there was really no point and returned to work - freeing up space for new patients - including moi. The universe is all connected.
So, we're off. Apparently only the size of the largest tumour is relevant - that's 2.5 cm. The grade is 2/3 and only one lymph node was affected to any relevant extent. The two tests that I hadn't seen the results of yet were also in. My tumours were estrogen receptive - which is great because that means my body can be fed full of tamoxifen (anti-estrogen) as part of chemo and kill the suckers that way. They were also Her2 negative - which is also very positive because that one's really difficult to deal with.
Bottom line: Ten Year breast cancer free survival rate with no further medical intervention - 66%; with tamoxifen - 75%; with chemo - 81%. Dr Clemons looks at me with a smile. "Not good enough. I want a 99% prognosis so let's step it up." The smile fades and the eyes widen, "That's not possible. Even your children don't have a 99% chance of survival over the next ten years." "Fine, you take me to 81 and I'll do the last 18 on my own." Another deal negotiated successfully.
So, the plan is chemo for 16 weeks, once every two weeks instead of every three(dense treatment), followed by radiation - I won't know what the deal is for that until I meet with Genest in January - then hormone therapy and finally other possible surgical interventions to be discussed later.
Doc Clemens then moves on to describe for me the expected side effects of chemo: hair loss, yes!!! Eyebrows raise and he's speechless again. "I want curly hair!" I explain. "Ah!"; puking; fatigue; infections and on and on. Then he turns to me and says, "You've met Hazel. She's a cold hearted bitch." Now it's my turn to raise my eyebrows and stare stupidly. "What? That nice lady I met earlier?" "Absolutely. Anyone gets in her way or messes with your treatment and Hazel will be after them. She'll take such good care of you. You've got nothing to worry about and you just let Hazel know if you have any questions or problems." Unfortunately, I'm sure he's only speaking about things related to my treatment, but even so. I've got a bitch in my corner and for once I can sit back and relax and take it easy while someone does the fighting on my behalf. Now I know what it's like to be the client - and I like it!
The only really bad spot in all of this is that I will have to give myself and injection (in the stomach!!) for five days after every chemo session. I have a real problem with needles and I'm not sure that I can do this. Both my mother and brother volunteered WAY too quickly when they heard about this. My sister and sister-in-law (doctor and nurse) are going to help out and maybe I can eventually take this over on my own - but man, when does the bad news stop? I guess that's the price you have to pay for curly hair.
Later!
I will make it up to you today however. Alot has happened since the last blog so make a cuppa (pause while I go and do the same), get comfortable and read on.
The day after the call booking me with Dr. Dent, I received a call that there had been a cancelation and was I available to come in on Friday, the 9th to see Dr Mark Clemons. Sure. The name meant nothing to me and I was only lukewarm over Dent. My sister knew her and says she would certainly see her, although she is rather aloof. I heard stories about test results not being delivered to patients and problems with her staff however. Also, I looked on-line and there was a very low rating with her with similar complaints. With my sister's assurances of competence however, I wasn't going to rock the boat - I would just have to work harder to make her laugh. So, sure, I'll switch to this Clemons guy, why not?
Man, did I luck out. If you look this guy up on line you get nothing but rave reviews. Also, a friend of the family had some experience with him and praised him highly. So great, I've now gone from the 22nd to the 9th and from an okay doc to a great one.
I truck off the hospital for the appointed time (note: Clemons is lovely but runs way late) and run into a beloved former client and her mom who are there - her mom is undergoing the same thing I am. It was great to have a chance to speak with them about the process and see someone who is way further along in the process than I am and still in great spirits and doing well. Bonus that the doc runs late too:)
About forty minutes after my scheduled appointment time, I'm ushered into an exam room by the lovely Hazel. We go over the forms (that I luckily had received just that morning in the mail and managed to complete despite the dust being kicked up everywhere by my contractor, the fact that I had to become a "contractor's assistant" to get the door hung and the crew working in the front room trying to figure out an IKEA wall unit). I ask about the fatigue and burn out that I was experiencing this summer. Is it possible, I want to know, that I was just experiencing some of the symptoms of my cancer. No, is the unequivocal reply. My cancer was caught too early for me to have been having symptoms. While it is still just a working theory, the current view of cancer among the specialists is that it is caused by stress. In lay terms, everyone has cells in their bodies that could become cancerous. The body's immune system takes care of them and prevents cancer from occurring. However, when we are stressed, the immune system is suppressed and the cancer takes root and grows. What Hazel found surprising was the number of years that I lasted at my job before I developed cancer. Someone please take this to my ADM and DM and make sure that they know what I took for the team!
I change into the required gown and in comes Clemons. Very British, younger than I expected and with a slight lisp - I think. Anyway, I didn't understand a thing he said for about the first ten minutes. After the exam we sit down to go over everything. I take out my pen and paper and he grabs it away from me. "What will I do if you make your own notes?" he asks. "I'm going to write down everything you need to know. But my handwriting is terrible so I hope you can read it!" Seriously? So we compromise. I tell him I won't write (I've already lost my pen and paper so this isn't much of a concession on my part) but if I can't read his writing and answer my family's questions, I'm going to send in my mother, sister and aunt and he can explain it all to them. He agrees, but only because he doesn't fully appreciate the enormity of what I've just proposed. One day he might.
Apparently, there was no patient who cancelled so I could have this spot. Clemons was supposed to be at some World Breast Cancer Conference but, the plane out of Ottawa being fully loaded, the flight attendant collapsed and was taken away in an ambulance. (Hopefully she's fully recovered) Having missed his connecting flight, the good doctor decided there was really no point and returned to work - freeing up space for new patients - including moi. The universe is all connected.
So, we're off. Apparently only the size of the largest tumour is relevant - that's 2.5 cm. The grade is 2/3 and only one lymph node was affected to any relevant extent. The two tests that I hadn't seen the results of yet were also in. My tumours were estrogen receptive - which is great because that means my body can be fed full of tamoxifen (anti-estrogen) as part of chemo and kill the suckers that way. They were also Her2 negative - which is also very positive because that one's really difficult to deal with.
Bottom line: Ten Year breast cancer free survival rate with no further medical intervention - 66%; with tamoxifen - 75%; with chemo - 81%. Dr Clemons looks at me with a smile. "Not good enough. I want a 99% prognosis so let's step it up." The smile fades and the eyes widen, "That's not possible. Even your children don't have a 99% chance of survival over the next ten years." "Fine, you take me to 81 and I'll do the last 18 on my own." Another deal negotiated successfully.
So, the plan is chemo for 16 weeks, once every two weeks instead of every three(dense treatment), followed by radiation - I won't know what the deal is for that until I meet with Genest in January - then hormone therapy and finally other possible surgical interventions to be discussed later.
Doc Clemens then moves on to describe for me the expected side effects of chemo: hair loss, yes!!! Eyebrows raise and he's speechless again. "I want curly hair!" I explain. "Ah!"; puking; fatigue; infections and on and on. Then he turns to me and says, "You've met Hazel. She's a cold hearted bitch." Now it's my turn to raise my eyebrows and stare stupidly. "What? That nice lady I met earlier?" "Absolutely. Anyone gets in her way or messes with your treatment and Hazel will be after them. She'll take such good care of you. You've got nothing to worry about and you just let Hazel know if you have any questions or problems." Unfortunately, I'm sure he's only speaking about things related to my treatment, but even so. I've got a bitch in my corner and for once I can sit back and relax and take it easy while someone does the fighting on my behalf. Now I know what it's like to be the client - and I like it!
The only really bad spot in all of this is that I will have to give myself and injection (in the stomach!!) for five days after every chemo session. I have a real problem with needles and I'm not sure that I can do this. Both my mother and brother volunteered WAY too quickly when they heard about this. My sister and sister-in-law (doctor and nurse) are going to help out and maybe I can eventually take this over on my own - but man, when does the bad news stop? I guess that's the price you have to pay for curly hair.
Later!
Tuesday, 6 December 2011
First Dates
Sadly, I am not referring to those wonderful, nail-biting, butterfly producing encounters between two relative strangers who are hoping fervently that they like the other, and more fervently that the night is not a total disaster and they make a complete fool of themselves.
Instead I am referring to a call from the Cancer Institute regarding dates. I have an appointment on December 22 to see Dr Susan Dent who will apparently be my oncologist. On January 16 I will see Dr. Ginest, the radiologist. Apparently I will not be able to start treatment before the holidays, which is too bad as I want nothing more than to get this kick started. However, on the up side I guess I won't be sick for Christmas:)
Instead I am referring to a call from the Cancer Institute regarding dates. I have an appointment on December 22 to see Dr Susan Dent who will apparently be my oncologist. On January 16 I will see Dr. Ginest, the radiologist. Apparently I will not be able to start treatment before the holidays, which is too bad as I want nothing more than to get this kick started. However, on the up side I guess I won't be sick for Christmas:)
Sunday, 4 December 2011
Call from the Cancer Institute
Just getting out of the shower on Friday, the phone rings and it's the Cancer Institute, doing a pre-registration. She confirmed my name, address, next of kin and health card number and said that someone will call me next week with dates for appointments.
Of course, it being me, I was dripping wet and could not find my health card for love nor money! I turned my wallet and purse inside out looking for it. I thought about the last time I had used it - which was the day of surgery. I turned out all my jacket pockets, but to no avail.
I finally located it at the bottom of a small pocket in my purse, tucked away all by its lonesome.
Look for big news at the end of next week.
P.S. I've been told that the blog is difficult to read b/c of the background colour. I've changed it - so I hope that it's better for all of you. cheers.
Of course, it being me, I was dripping wet and could not find my health card for love nor money! I turned my wallet and purse inside out looking for it. I thought about the last time I had used it - which was the day of surgery. I turned out all my jacket pockets, but to no avail.
I finally located it at the bottom of a small pocket in my purse, tucked away all by its lonesome.
Look for big news at the end of next week.
P.S. I've been told that the blog is difficult to read b/c of the background colour. I've changed it - so I hope that it's better for all of you. cheers.
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