As some of you know, I've been feeling more exhausted these last few months than I did during treatment. All through August I've been counting the days until school begins - so that I could sleep my days away:) I am hoping to get back to work in October so with the first day of school routine for the kids, I decided that I would begin a routine for myself as well - pretending that I was working.
I have managed to get out of bed by 06:00 for three whole days in a row - which I count as a huge success. Unfortunately, I've crashed around 14:00 each day and needed a three hour sleep before I could get up and make supper and do the necessary with the kids in the afternoon. I still insist on counting that as progress - anytime I get up before 10:00 is good these days - and this from someone who rarely slept more than 5 hours out of 24 for the last decade:)
I spoke with the Clemons/ Hazel team about the fatigue and they have assured me that it is nothing to worry about at this stage. Apparently they see this type of thing relatively often with "people like me". I asked for a little clarification on that last phrase and was told that people who really focus on getting through the treatment as well as I did often crash afterwards. Sort of like working your buns off before you go on holiday only to catch a miserable, lingering cold on your second day away from the office. We'll re-assess the fatigue on my next visit at the end of November. If it's still really bad then they'll run some tests but they are so far unconcerned - which is a huge relief.
I told Doc Clemons briefly about Arnaout and he was full of nothing but praise for her surgical skills. He didn't convince me to see her again however and he and I will discuss surgeons in Toronto at our next visit.
I see Dr. Genest, my radiologist on Monday. I'm not expecting anything to flow from that visit - it is really pro forma. My next real hurdle is my return to work which will be gradual (see above re fatigue). While managment was very supportive of me at the outset of my leave, interest in my career seems to have waned considerably and I am not currently feeling the love. I'm sure that we can work it out in the end but things are currently completely in the air and it's rather gnawing at me - I hate things that are unsettled.
As life and health wend their way back to normal, I'm going to wind up the blog. I find that I have less and less to write about that could possibly be of interest. Besides, it's interfering with my napping:)
All my love to everyone. It has been quite a REEDONKULOUS JOURNEY - but one full of love and one that has made me take stock of my life, values and priorities. I am ultimately grateful for what has come to pass and will always remember the lessons.
Thursday, 6 September 2012
Saturday, 4 August 2012
Open Letter to Doctor Arnaout
August 4, 2012
Dear Dr. Arnaout:
This letter follows our meeting of July 30, 2012 and I am writing with a simple message: get over yourself! Your job is to serve people with cancer, specifically women with breast cancer. This is not a platform for your ego.
Have you ever considered the impact that it has on your patients when you walk into the examination room wearing a head scarf of the type that your patients will soon have to be wearing? You treat patients who are going to lose their hair and many will have serious problems with that. Not to mention that the chemo that will wipe out their hair will also make them feel wretched for months. Having a perfect head, I had the luxury of being totally down with my dome, but it will be traumatic for many women. Do not wear a headscarf that looks like you too have cancer! I just about fell off of my chair when you walked into the room wearing that thing. It took me a full 5 minutes to be sure that you weren't also a victim of cancer. Does it bother you that your patients have something that you don't? Do you need to be the centre of attention that badly?
I am not stupid. Please don't speak to me as if I am. Also, please don't respond to my questions with, "Let me finish!". Our meeting should not be a platform for some rehearsed speech that you have about how you like things to work. Ideally, your patients should be able to have a conversation with you about treatment. My questions are all valid, even if you think they are stupid. You should treat them that way. It shouldn't matter if they don't arise at the scripted time of your speech.
They are my tits. If I can make jokes about them, then you need to lighten up and let me. If I joke about how you are going to lop them off, then go with me. Don't take offense. When you look at your med student, aghast, after I crack a joke, try to remember that I'm sitting there and can see you. Refer above, I'm still not stupid. Refer above again, get over yourself.
Don't tell me that my former surgeon and my current oncologist don't know what they're talking about without giving me some references, resources, citations. It's not helpful to give a person in crisis contradicting information without providing more. Don't try to eliminate the confidence your patients have in their other doctors. You might be wrong.
Don't tell me that I'm "a little bit weird". You ain't seen nothing - I take weird to a whole new level and that's frankly just tough! I didn't bring you a sacrifice to lay at your altar, I do not come on bended knees. I come with a horrific matter that I am hoping you can help me solve. My humour in this situation doesn't make me weird or strange or funny. It makes me resilient beyond your wildest dreams and you should learn to recognize that strength in your patients. Refer above again: I am not stupid and this is not about you.
When you examine my breast after your med student has told you (but no one has yet told me) that there is a lump in my other breast, do not turn to the student and say, "Oh ya, I can feel that. You did a good exam. Wow!" I AM STILL IN THE ROOM. IN FACT, I'M MOSTLY NAKED LAYING ON THE TABLE WITH MY BOOB IN YOUR HANDS!!! Perhaps you should consider addressing your remarks first to the patient and then (or even later??!!) to your student. And while we're on the topic of the new lump in my left breast, did you know that you were using your out loud voice when you said, "Let's get an ultra sound on this for the file. I'm sure that it's nothing but we'll want to document that so we're covered." I suggest that a more appropriate response to finding a lump would be to LOOK AT THE PATIENT and try something along the lines of, "We have found a lump in your breast so we're going to order an ultra sound to rule out it being anything other than an ordinary cyst. It doesn't seem to be anything serious to me."
By the way, it's been a full week and no one has called me for the ultra sound booking. I thought you might like to know.
In short Doc Arnaout, it was not a pleasure to meet with you. If I still had cancer and you were the last doctor on the planet I don't think I'd let you operate on me. While I have no doubt that you are a skillful surgeon, as a human being and as a medical professional, you suck. That one IS about you.
Sincerely,
Donna, Still Looking for a Surgeon
Dear Dr. Arnaout:
This letter follows our meeting of July 30, 2012 and I am writing with a simple message: get over yourself! Your job is to serve people with cancer, specifically women with breast cancer. This is not a platform for your ego.
Have you ever considered the impact that it has on your patients when you walk into the examination room wearing a head scarf of the type that your patients will soon have to be wearing? You treat patients who are going to lose their hair and many will have serious problems with that. Not to mention that the chemo that will wipe out their hair will also make them feel wretched for months. Having a perfect head, I had the luxury of being totally down with my dome, but it will be traumatic for many women. Do not wear a headscarf that looks like you too have cancer! I just about fell off of my chair when you walked into the room wearing that thing. It took me a full 5 minutes to be sure that you weren't also a victim of cancer. Does it bother you that your patients have something that you don't? Do you need to be the centre of attention that badly?
I am not stupid. Please don't speak to me as if I am. Also, please don't respond to my questions with, "Let me finish!". Our meeting should not be a platform for some rehearsed speech that you have about how you like things to work. Ideally, your patients should be able to have a conversation with you about treatment. My questions are all valid, even if you think they are stupid. You should treat them that way. It shouldn't matter if they don't arise at the scripted time of your speech.
They are my tits. If I can make jokes about them, then you need to lighten up and let me. If I joke about how you are going to lop them off, then go with me. Don't take offense. When you look at your med student, aghast, after I crack a joke, try to remember that I'm sitting there and can see you. Refer above, I'm still not stupid. Refer above again, get over yourself.
Don't tell me that my former surgeon and my current oncologist don't know what they're talking about without giving me some references, resources, citations. It's not helpful to give a person in crisis contradicting information without providing more. Don't try to eliminate the confidence your patients have in their other doctors. You might be wrong.
Don't tell me that I'm "a little bit weird". You ain't seen nothing - I take weird to a whole new level and that's frankly just tough! I didn't bring you a sacrifice to lay at your altar, I do not come on bended knees. I come with a horrific matter that I am hoping you can help me solve. My humour in this situation doesn't make me weird or strange or funny. It makes me resilient beyond your wildest dreams and you should learn to recognize that strength in your patients. Refer above again: I am not stupid and this is not about you.
When you examine my breast after your med student has told you (but no one has yet told me) that there is a lump in my other breast, do not turn to the student and say, "Oh ya, I can feel that. You did a good exam. Wow!" I AM STILL IN THE ROOM. IN FACT, I'M MOSTLY NAKED LAYING ON THE TABLE WITH MY BOOB IN YOUR HANDS!!! Perhaps you should consider addressing your remarks first to the patient and then (or even later??!!) to your student. And while we're on the topic of the new lump in my left breast, did you know that you were using your out loud voice when you said, "Let's get an ultra sound on this for the file. I'm sure that it's nothing but we'll want to document that so we're covered." I suggest that a more appropriate response to finding a lump would be to LOOK AT THE PATIENT and try something along the lines of, "We have found a lump in your breast so we're going to order an ultra sound to rule out it being anything other than an ordinary cyst. It doesn't seem to be anything serious to me."
By the way, it's been a full week and no one has called me for the ultra sound booking. I thought you might like to know.
In short Doc Arnaout, it was not a pleasure to meet with you. If I still had cancer and you were the last doctor on the planet I don't think I'd let you operate on me. While I have no doubt that you are a skillful surgeon, as a human being and as a medical professional, you suck. That one IS about you.
Sincerely,
Donna, Still Looking for a Surgeon
PARTAY! PARTAY! PARTAY!
What a wonderful evening! I only wish that it could have lasted longer. I didn't get to spend nearly enough time with anyone! Suddenly it was over and I was just getting warmed up! Thank you for the lovely food and the gorgeous rocks! My garden brings me such joy! I love to sit in the back yard now and look at that garden and I can absolutely feel the love. What a tremendous gift you have all given me. Thank you.
I'm loading here some photos from the evening and some shots that I took the next day. I'm sorry for the delay in posting all of this. I slept about 18 hours a day for a full week following the party. I was totally wiped. I still haven't made a single supper for the kids and I since then! The week after that the kids played in three golf tournaments (Syd won girls low net in the City and District and Logan shot a 74 in the intersectional match) and, with a little help from Granny, all I managed to do was drive them around the Ottawa Valley to various golf courses. All the driving really cut into my nap time!!
Tomorrow we are leaving for the Henley Regatta which takes place from the 7th to the 12th. I will literally be taking care of Logan and feeding him for the week and Sydny, granny and I will be taking off one day to get our colours done and grandpa will be taking over cooking duties. As long as I have time to nap, it will all be alot of fun:)
Here are some photos. It was great to see everyone. I hope you are enjoying this hot, hot summer. I know that I am!
I'm loading here some photos from the evening and some shots that I took the next day. I'm sorry for the delay in posting all of this. I slept about 18 hours a day for a full week following the party. I was totally wiped. I still haven't made a single supper for the kids and I since then! The week after that the kids played in three golf tournaments (Syd won girls low net in the City and District and Logan shot a 74 in the intersectional match) and, with a little help from Granny, all I managed to do was drive them around the Ottawa Valley to various golf courses. All the driving really cut into my nap time!!
Tomorrow we are leaving for the Henley Regatta which takes place from the 7th to the 12th. I will literally be taking care of Logan and feeding him for the week and Sydny, granny and I will be taking off one day to get our colours done and grandpa will be taking over cooking duties. As long as I have time to nap, it will all be alot of fun:)
Here are some photos. It was great to see everyone. I hope you are enjoying this hot, hot summer. I know that I am!
Tuesday, 3 July 2012
I Kicked a Little Butt with some help from my friends
I am back to my NEW self! Chemo is over! Radiation is over! I'm doing yoga and making jam. There is what passes for grass in my back yard! Things are definitely getting better. I still crash every few days and then sleep for 12 to 14 hours for a couple days in a row, but that will lessen with time - I have no doubt.
I kicked radiation's butt too! I didn't blister or peel. I got a little red, slightly flaky in a small area of my back, that's about it. I still look like I was sun bathing half topless - but only the girls in the change room at the gym would know that! With my parting of the ways from Brown Eyes and Blue Eyes, my only exposure is with other grungy worker-outers.
Bluesfest starts tomorrow! Syd is only away with her dad until Sunday and Logan didn't go at all this year. That means that I will have kids around during BF for the first time in many years. Bummer! Oh well, maybe they can head down and take in a show for once.
Laurie and I are biking to BF like every year. It's definitely the way to go with free, guarded bike parking for the entire festival and it's way easier than trying to get on a bus with 10,000 others at the end of the night. The weather promises to be hot and sunny so far - I'm keeping my fingers crossed.
I was supposed to meet with Doc Arnault on July 5 but it has been postponed until the 30th. It's a minor hiccup and is not much of a wait so I'm not worried. Quite a change from when I was meeting with Mirsky and couldn't wait to be cut open to remove the tumours. I like this feeling of calm and quiet resolution much better. If Mirsky had postponed a visit by over three weeks I think I would have lost my mind.
In keeping with Dr S's admonition to "not become a cancer survivor", I working towards putting the cancer behind me, but keeping the love and lessons with me as I move forward to the next 46 years. I would love if you would help me to do this. I am having a party on Saturday, July 21 at my place. (Let me know if you need the address) I am asking that, if you can, please bring a rock with you. I am going to place all these rocks in my new gardens as a symbol of the support you have all given me through this reedonkulous journey and the strength that comes from knowing one is not alone. In this way I can create a beautiful and lasting refuge in my yard and take forward the good things that have come out of the past year and leave the cancer itself far behind. I know that many of you aren't in Ottawa - or even Canada - but consider making this a holiday destination and joining us. It would be great.
Let me know who you think is a "don't miss act" at BF this year. So far my new fave is Bright Light Social Hour. They're awesome!
I kicked radiation's butt too! I didn't blister or peel. I got a little red, slightly flaky in a small area of my back, that's about it. I still look like I was sun bathing half topless - but only the girls in the change room at the gym would know that! With my parting of the ways from Brown Eyes and Blue Eyes, my only exposure is with other grungy worker-outers.
Bluesfest starts tomorrow! Syd is only away with her dad until Sunday and Logan didn't go at all this year. That means that I will have kids around during BF for the first time in many years. Bummer! Oh well, maybe they can head down and take in a show for once.
Laurie and I are biking to BF like every year. It's definitely the way to go with free, guarded bike parking for the entire festival and it's way easier than trying to get on a bus with 10,000 others at the end of the night. The weather promises to be hot and sunny so far - I'm keeping my fingers crossed.
I was supposed to meet with Doc Arnault on July 5 but it has been postponed until the 30th. It's a minor hiccup and is not much of a wait so I'm not worried. Quite a change from when I was meeting with Mirsky and couldn't wait to be cut open to remove the tumours. I like this feeling of calm and quiet resolution much better. If Mirsky had postponed a visit by over three weeks I think I would have lost my mind.
In keeping with Dr S's admonition to "not become a cancer survivor", I working towards putting the cancer behind me, but keeping the love and lessons with me as I move forward to the next 46 years. I would love if you would help me to do this. I am having a party on Saturday, July 21 at my place. (Let me know if you need the address) I am asking that, if you can, please bring a rock with you. I am going to place all these rocks in my new gardens as a symbol of the support you have all given me through this reedonkulous journey and the strength that comes from knowing one is not alone. In this way I can create a beautiful and lasting refuge in my yard and take forward the good things that have come out of the past year and leave the cancer itself far behind. I know that many of you aren't in Ottawa - or even Canada - but consider making this a holiday destination and joining us. It would be great.
Let me know who you think is a "don't miss act" at BF this year. So far my new fave is Bright Light Social Hour. They're awesome!
Tuesday, 12 June 2012
RADIATION IS FINISHED!
Yahoo! I should have posted this blog last Thursday - my last radiation session but I was too high following and have been rather low since. I bought various bags of chocolates and put together a basket of them for the techs in celebration of being finished. They were a great group of people and worked tirelessly at preserving my Sharpie marks from water, soap, sweat and cream that all tried to eradicate them. Brown eyes came out to the waiting room to get me on my last day and so I got to give them to him. He was giddy with chocolate for breakfast:) They made me promise to only run into them at music festivals and other fun venues in the city and never, ever to darken the door of the radiation room again. I agreed wholeheartedly.
I still don't get the radiation thing. I have a burn on my back from the radiation going right through me! I'm burned from the inside out:( I was allowed to miss some days but not others....???? It took no time at all once I was all aligned on the grid (not even enough time to fall asleep), I didn't feel a thing and yet I'm burned all over, my right arm hurts - inside - and I'm so damned tired! There was a bell that I could ring to celebrate the end - but the radiation room didn't give me that kind of vibe. Plus I got in trouble from doc Genest:)
On my second last radiation day I was also scheduled to see Doc Clemons and do my clinical trial bloodwork and shot, etc., etc. I didn't have any pharmacology appointment in my phone however so I checked in at the radiation desk to see if they could find out for me. When I spelled my name another clerk came over and told me that Genest was looking for me and that when I showed up they were not allowed to let me leave! They paged him right away and the clerk shortly came to find me to tell me he was running over. Yikes! I went to an examination room to wait. I felt like I was back in elementary school. When Doc Genest came in he was in a hoody and cords and his hair was all over the place. My God, he had actually run over! I started right off with, "I hear that I'm in trouble - but I was fine so I didn't want to waste your time." Genest just laughed and told me that he preferred seeing healthy people anyway. We just chatted about how things had gone and what I could expect over the next couple of weeks. Sadly, the skin will worsen over the next two weeks and the fatigue will continue for up to three or four months. This last part is very worrisome as bluesfest starts July 4. I need to be able to dance for at least two hours a night, ride a bike for about 40 minutes and drink a reasonable amount of beer over the course of the evening - plus walk around schlepping my festival chair everywhere. I need to get alot of naps in between now and then! Genest and I have a follow up date for September (I talked him out of one a month from now) as long as I promise to call the unit if I have any opening of the skin or blisters develop. Eww.
Clemons gave me a script to start me on hormone therapy - for the next 5 years. He also signed me up for two more studies - one on my treatment generally and my preferences for side effects of treatment - like would I prefer a regime where there was a 90% chance of baldness and loss of eyebrows or one where I have severe nausea for a week following each chemo session that is so bad that I end up in the hospital for several days each time. That is a no-brainer of course. Who thinks these things up? Anyway, all I have to do for that one is answer on-line surveys every now and again. Then he signed me up for a two year study to follow me on the hormone therapy. I didn't have to meet with anyone so it won't measure whether I get more cranky and moody with hormones - but after I agreed to do it I found out that I have to collect the packaging from my scripts in a baggy for the next year. Seriously? Is this just a sneaky way to monitor whether I actually take the stuff? Are they worried that I won't? It's enough to make me cranky - and moody:)
And time for just one quick rant - what is with the snow tires this year Ottawa? On Wednesday heading to the hospital I counted 14 cars with snow tires still on in a drive that takes less than ten minutes. People, it's the middle of June already. It was 30 degrees yesterday. Take them off already! They are made of softer rubber than All Season and they basically melt in this hot weather. And one more - when you're picking people up from the hospital - turn off your engine. I know that it's warm out - but please don't idle. There are sometimes sick people in that place.
I still don't get the radiation thing. I have a burn on my back from the radiation going right through me! I'm burned from the inside out:( I was allowed to miss some days but not others....???? It took no time at all once I was all aligned on the grid (not even enough time to fall asleep), I didn't feel a thing and yet I'm burned all over, my right arm hurts - inside - and I'm so damned tired! There was a bell that I could ring to celebrate the end - but the radiation room didn't give me that kind of vibe. Plus I got in trouble from doc Genest:)
On my second last radiation day I was also scheduled to see Doc Clemons and do my clinical trial bloodwork and shot, etc., etc. I didn't have any pharmacology appointment in my phone however so I checked in at the radiation desk to see if they could find out for me. When I spelled my name another clerk came over and told me that Genest was looking for me and that when I showed up they were not allowed to let me leave! They paged him right away and the clerk shortly came to find me to tell me he was running over. Yikes! I went to an examination room to wait. I felt like I was back in elementary school. When Doc Genest came in he was in a hoody and cords and his hair was all over the place. My God, he had actually run over! I started right off with, "I hear that I'm in trouble - but I was fine so I didn't want to waste your time." Genest just laughed and told me that he preferred seeing healthy people anyway. We just chatted about how things had gone and what I could expect over the next couple of weeks. Sadly, the skin will worsen over the next two weeks and the fatigue will continue for up to three or four months. This last part is very worrisome as bluesfest starts July 4. I need to be able to dance for at least two hours a night, ride a bike for about 40 minutes and drink a reasonable amount of beer over the course of the evening - plus walk around schlepping my festival chair everywhere. I need to get alot of naps in between now and then! Genest and I have a follow up date for September (I talked him out of one a month from now) as long as I promise to call the unit if I have any opening of the skin or blisters develop. Eww.
Clemons gave me a script to start me on hormone therapy - for the next 5 years. He also signed me up for two more studies - one on my treatment generally and my preferences for side effects of treatment - like would I prefer a regime where there was a 90% chance of baldness and loss of eyebrows or one where I have severe nausea for a week following each chemo session that is so bad that I end up in the hospital for several days each time. That is a no-brainer of course. Who thinks these things up? Anyway, all I have to do for that one is answer on-line surveys every now and again. Then he signed me up for a two year study to follow me on the hormone therapy. I didn't have to meet with anyone so it won't measure whether I get more cranky and moody with hormones - but after I agreed to do it I found out that I have to collect the packaging from my scripts in a baggy for the next year. Seriously? Is this just a sneaky way to monitor whether I actually take the stuff? Are they worried that I won't? It's enough to make me cranky - and moody:)
And time for just one quick rant - what is with the snow tires this year Ottawa? On Wednesday heading to the hospital I counted 14 cars with snow tires still on in a drive that takes less than ten minutes. People, it's the middle of June already. It was 30 degrees yesterday. Take them off already! They are made of softer rubber than All Season and they basically melt in this hot weather. And one more - when you're picking people up from the hospital - turn off your engine. I know that it's warm out - but please don't idle. There are sometimes sick people in that place.
Subscribe to:
Comments (Atom)