so I am sooooo rife with exhaustion I can barely make a sentence without mis-speaking a word or forgetting my thought half way through. This is normal for me at this time of year. Somehow I am usually a little more organized in the shopping department. The groceries are being delivered tomorrow, but I forgot to order the dishwashing detergent. I bought the Christmas tree, set it up and decorated it and now it won't stand up straight. It has a full on leaning tower of Pisa going on. Last year it fell over twice, so I guess leaning is a step up. I got the key "Santa" gift of the season, and it only took traveling back and forth across the Hamilton mountain twice in white out snow conditions to get it. I did get almost 4 hours in the car alone listening to music while I ran all kids of work and some personal errands when I found the gift so I guess that should make me feel rested.. or something. We got all but one gift shipped today at the store.... none of my personal gifts or cards are even remotely ready... oh well. My peeps won't hold it against me I guess. I used to love spending tons of time and money wrapping gifts in an interesting way. Stationary and wrapping paper have always been a passion of mine. I almost had palpitations in the new Martha Stewart paper craft section at Michael's today... tomorrow after work, I will come home get my kid to do some last minute shopping.. come home again and clean the house and do the dishes( if I remember to get the dishwashing stuff) I will take stock of what I have bought and figure out what gift bags I have from last year that I can reuse AGAIN to chuck this stuff in.. Ya, honourable in the spirit of reusing stuff, but totally boring in the spirit of gift wrapping specialness. I had a mammogram last week as you know... and so far noone has called me to make me get biopsies and horrible other things... which was what happened last time I had a mammogram. I think that is a gift.
I think of you everyday and wish for a wireless connection from my brain to my blog and you could see the thoughts I send you everyday. This past few weeks had been totally crazy. Lots of milestones, lots of good and bad news. On November 24th we finally buried my mother’s ashes after 2 years of them sitting in my house. Her ashes sat next to the sewing machine for a long time; she would have liked that. On Dec 2nd I turned 42, I worked all day and had a last minute unplanned home cooked dinner with Tim. On Dec 9th my first and only child turned 10. On that same day my best childhood friends’ mother died. Today Dec 16th I had my first yearly mammogram since I found the cancer last year. In 2 days it will be the anniversary of finding my lump.
Since I wrote I have had heart tests and results and it is confirmed that my heart is not quite right since starting the herceptin (the drug that counteracts my her2neu- the funky protein that makes my type of cancer extra nasty) SOOOO, now I get to go to the Cancer Centre every 3 weeks for herceptin, and every 6 weeks for Heart tests (RNA/ MUGA scans) I am not having any symptoms of heart problems, but my scan results have dropped since my first one, so we have to watch it.
I plan to start back to triathlon training in January once I get through this nutty Xmas season at the store. I am sitting here in the chair getting Herceptin now so I just have to hope everything will be ok.
Ok, my IV is done. I will post more later I PROMISE!!!!
this is day one after 2 days off which were after 28 days of coming into the store... my to do list is total madness. Here is my list of things to do and write about: Kill the staff for not mopping the floor. How much does a boob weigh anyway? tell blog readers about moms burial( just her ashes, she died 2 years ago)and my thoughts on that. Tell Blog readers what I eat for breakfast Find an Angel Investor to get the store through Xmas. Send store newsletter out Oh, write store newsletter in order to accomplish the above Try to work out why no one is Xmas shopping yet Try to convince customers in above mentioned unwritten newsletter to not shop in the states this Friday. Update the website Update the Aframe outside Set up the stereo in the store or hire someone to do it Hang the curtain in the store spray paint the chandelier for the store window Do the other store window... Start a new blog just for the store. Get the lost and found kitten chipped and collared. clean house, do laundry, Eat well, sleep 8 hours a night... uummm ya right! Coolio.. there is my list. Dear Bloggy readers.. feel free to bug me about getting these things done! Gotta run, customers are here... Later! N
OK, so the stupid doc finally called with a pathetic excuse for an apology. The nurse was supposed to call me with test results B4 the heart scan department called with the second heart scan test info. My baseline heart function was 55-57 in August, now it has dropped to 50. All of these numbers are in the "normal" range but a drop is cause for "caution" so they are testing me again. The protocol for Herceptin stoppage is a drop of 15 or more, so I could do my next Herceptin on the 24th and the next heart test on Dec 5th and still likely be safe/ok (or perhaps drop to 49.... WTF?) So, since I was hoping to have my Herceptin on the 24th in the morning, so we could finally bury my mom's ashes on the 2 year anniversary of her death in the afternoon I decided to postpone the scan until after the next Herceptin. So, now I have 3 weeks with no Hospital visits. I thought it was idiotic to have more Herceptin until after the scan.
Worst case scenario? If the heart still keeps dropping then we can stop, let the heart recover(Herceptin damage to the heart is not necessarily permanent) and then they can start again.
So, I get the 24th free to bury Mom's ashes and get that FINALLY taken care of. It is a long story why it did not happen b4, but it was all about Money and Timing, and since she requested a plot in a section of a cemetery that was not open yet we held off... and then I got cancer.
Wednesday, November 12, 2008
Doc called 3 times.. left messages at my house. I explicitly left my cell and my store numbers on the message this morning....NOT my house number.
Like I said.... hiring policies at that hospital..... !!!???
I called the docs office and nicely but firmly compelled the receptionist to make the Doc call me back. The Head Onco was busy, but she did try... and I told her the other Doc knew me better... and not to bother having the nurse call...
I think the interviews for help at that hospital must have gone like this: "Got Medical Qualifications? yes!
Are you an idiot??? GOOD you are exactly what we are looking for!"
Here is my stupid cancer news. Got a call the other day for a heart test appt. I already had a heart test last week( Herceptin, the anti cancer drug I am on right now can cause serious heart damage so they test me every three months) the first one since Herceptin started( aside from the pre Herceptin baseline test). Results are supposed to be to the doc within 24 hours. No call, so I assume the news is good. I called this morning to say, I got a second call about a heart test, but I already had one.... and left another question about a forthcoming appt. change. The Receptionist said the onco nurse would call. She did... left a message on my cell Voice mail... saying "we need to do another heart test because there was a drop in function and we need to confirm that is was real.. oh, and I can change that appt for you. Call the office if you need anything else... bye!"
BYE!ANYTHING ELSE???? WTF!!!!
A WEEK! A FECKING WEEK they had those negative results and no one called me???
AND my next Herceptin is BEFORE my next heart scan??? What? So they can just gamble that it will not do more damage!!?
I am LIVID!
and here I am 6pm, and have to wait until morning to find out WTF is going on...
Don't worry, I have not disappeared. I am on TV in the morning and have been working 7 days a week and am suuuuper tired. Dear Bloggy readers I will be back soon!
There are a lot of reasons I do not own a dog in real life. The simple reason is I don't really like dogs( or at least most of them I have met to date)The complicated reasons are: I am so small many dogs can knock me over. I do NOT have the time to be tied to walking a dog however many times a day you dog people have to walk them. There are very few reasons in my mind to have to be forced by the government to pick up poo. If I ever have a dog in my life it will be a cold day in H-E-double-hockey-sticks before you catch me carrying around a plastic bag of poo. There is no outfit on the earth that is well accessorized by a bag of poo. NOT ONE!!!
**If you don't know about my Dog Cancer then read the previous post.... **
Yesterday I was dragging Cancer around and it was one of the those mangy barky nasty dog days. The day was so bad I felt like I had my Dog Cancer and was forced to carry it's poo around with me in a plastic bag
The day to day living with cancer is an interesting thing. While I was in chemo and “rocking the bald” I could not really hide from it. It looked me in the mirror everyday, and people asked me dumb- ass and/ or curious questions about it all the time. I had no choice but to pay attention to the physical reality and side effects of chemo. Now, I have hair and I do not have the shiny skinned, bug eyed and bloated look that chemo so graciously creates. So for the general public I am, to quote Tim “the old lady with funny boobs” or for the most part a “normal”. Even though being bald and bloated and sick was awful it gave me a look that allowed me to be the cancer victim. Now, people still say things to me that seem odd, but they are different from the chemo/ cancer comments and questions. The other day at a restaurant it went like this “I like your hair” I said “oh, this hair-do happened by accident” (what the hell else could I say to this stranger in a Vermont restaurant “restroom”on a Wednesday morning?) She said “I have had lots of haircuts I got….blah blah blah.” By this point I had tuned out wondering whether to bring cancer into the conversation… I left the bathroom feeling kind of dejected. I am not special anymore. I am just the same as everyone else. Strange I know, because being “normal” is all I ever wanted during treatment. But now I know. I know that I will never be ‘normal’ again; I will never not have cancer looming over my head. I may get cancer again. I may never have gotten rid of it. I have a better chance of having more cancer than anyone who has no had it before. At this stage I am not sure if I will ever forget that. Not many minutes go by without thinking about cancer, talking about cancer or doing something about ….. cancer.
While you may think I sound like I am depressed by this you are incorrect. Getting cancer for me was not depressing, it was annoying and hard and scary and stuff but not depressing. I got through the treatment with a kick ass attitude and nothing will change that. But now cancer just won’t ever go away….Won’t go away like having a dog on a permanent leash attached to you won’t go away. Some days dragging this stupid barking mutt around is harder than other days. Some days, it is like having a little puppy- a lighter but still yappy and annoying. Last weekend in Vermont it was a puppy. Today it is a big, but kind of quiet dog. I just hope sometime soon I can drop the damned thing off at the pound.
I will possibly be rambling to the blog a lot this week. I have a lot to say after more than a week away from writing. I was away on a trip until 2 days ago. I took some time with my son and ‘boyfriend like’ man person to visit friends in Vermont. Many of you know that I went to “college” there. I am an alumna of the illustrious Middlebury College in Middlebury Vermont. That is alumna, but not graduate … or for those whose Latin is a little rusty I attended the school but I did not graduate, I chose the what I call the 'leave college early combo number #3' of Fail out, get invited back, and choose ultimately not to return.
I discovered Middlebury on a bike trip to Vermont in the summer of 1984. 12 or so other kids and I rode 200+ miles through the mountains and little towns of that amazing state over 2 weeks. Every day we sat in a grassy patch somewhere to have lunch (mostly PB and J’s, Sliced Turkey, apples and sometimes a pint of Ben and Jerry’s when it was still made by Ben and Jerry) We cycled through Ludlow, and Bristol and Vergennes and many other places climbing massive hills including the frightening Middlebury gap(5 miles up, 9 miles down) On one day we rode into the little town of Middlebury (on the way into town we got to pee in the very old, but very chi chi lobby bathroom of the Middlebury Inn) Little did we know we would be back in town more than once, and that on the tour of the state we were often only within 20 miles of Middlebury. On one of those lunch breaks we found a nice shady spot on the Middlebury College Campus across from the Admissions office. After talking to the other kids on the trip about US schools I learned more about the place. I grabbed a flyer from the Admissions building mail box display and miraculously that pamphlet made it home. There is more to the story, but ultimately in the fall of 1985 I matriculated into the class of 1989. Through my 18 months at “Club Midd” (so named for the insane amount of luxurious sports facilities and such at the very wealthy college) and my bike trip and my many trips back to visit friends I fell head over heels in love with the state of Vermont and along with France and perhaps Scotland it is one my favourite places on earth.
We had amazing warm and sunny weather and many things to do and people to visit so we did not sit still much. Now, of course I am paying for it with post vacation tiredness. I truly believe I needed 2 days upon arrival to recover from the planning and traveling exhaustion part of the trip- not to mention the exhaustion of the 10 months of freakin’ cancer!! I think a 5 day trip would have been perfect AFTER those two days and then I need another 2 days to get home, and unpack and rest in order to get back to the routine of daily grown up life. So, next trip I need to book 9 days?? I wish!! One day.
Paging Dr Frank Burns! Paging Dr Frank Burns! Have you met your patients? Or do you just look at their charts for a second and head into the appointments hoping you remember what the heck you just read??? Perhaps we should attach photos of your patients to the chart. How about one with hair, one without would that help you remember us and our medical details? Maybe a tattoo on our foreheads with the dates and details of diagnosis… would that help?
So, here is the story. Yesterday I was at my favourite Hospital I had a doc's (aka Dr Frank Burns) appointment. Bloodwork and a physical exam of sorts. My sore hands and mouth cold sores and other lingering side effects are all from the chemo (I knew that, but wondered if there was anything that could be done etc but my medical team just shrugged at me) Yesterday the onco nurse asked a bunch of questions and scheduled my Heart scan(needed during Herceptin) and mammogram in Dec. and sent the doc in to examine me. 40 min later the Dr showed up and asked if I had questions and I talked about the hand pain etc and was told it was from the taxol chemo.... then started the exam. Then the Dr asked about when my last Mammogram was. I said in January which was how I was diagnosed...the the Dr said... and catch this.... "THIS YEAR? OR LAST YEAR?" ummmmmm this year doctor.... because you are in this room for my FIRST exam since my chemo ended in July. You know.... the chemo we just finished talking about 2 minutes ago!!! Perhaps the Dr got distracted while touching my boob...? Or maybe it is because despite their name on all my charts since this Dr has only met me 4 times including once in the elevator and had no idea who the hell I was..... Today in herceptin I had to ask the chemo nurse for my bloodwork results, because they did not give them to me yesterday (they never gave me bloodwork results before either, but I figure the first post chemo test was preeeety important) Thankfully, everything is within normal ranges. Dr Burns that should have been left to you, but I am thankful the nurse helped me with that. Next time I am sick, Dr’s Pierce and Honeycutt will have to be called.
I am just returning from a long awaited but far too short vacation in Vermont(one of the best places on earth. I will be back to blogging later this week. I have Herceptin this week and my first post chemo check up with my onco that I do not like. Woo hoo! You know I will have a lot to talk about after that meeting.
On Monday the construction company finally gave us notice that we have to move our cars from the street by 7 am each day so they can pave the street that they have been screwing up/ working on since May. I did so for Monday, but they never paved the street. I moved the car for Tuesday, but they never paved the street. I did not move the car for Wednesday, and they still did not pave the street. I did not move the car for Thursday(this morning) because frankly, I don't trust these guys anymore and I had a lot of stuff to carry last night. I knew they might knock on the door again, so I figured I would deal with it. I was woken up at 7:45 to laughing and talking. I thought it was my radio. Nope. I thought it was my son's radio. Nope. Then there was a knock at the door. Luke answered the door and I heard a man ask " is that your parent's green car over there?" Luke replied "Yes, but my parents are asleep" "Well go wake them up they have to move that green car!" Note the lack of Pleases and Thank You's in this interaction. I heard the conversation and the tone of voice by the construction worker was less than pleasant. Is it not normal to at least pretend manners when speaking to someone elses child?
So I got dressed and came down to move the car, totally prepared to talk to someone about their lack of manners with my son. I knew full well it would fall on deaf ears, but I still had to say it. Low and behold in front of my house I find 4 construction workers on my front sidewalk talking, laughing and smoking cigarettes! Keep in mind this is a tiny street so they are smoking less than 10 feet from my bedroom window. I laid into them hard! I told them they should think about who they might be waking up with their early morning chatting (this is when I saw the cigarettes) and showed them how close they were to my bedroom window and suggested they should also use the word please when they spoke to people and most especially children. They said it was not them that came to the door, but another worker. I apologized and told them(this is the new paving crew, not the crew that has been here through most of the project)how bad this summer has been with the road construction and how this was the first time we had been given notice about moving the cars, I told them I had been ill all summer and how I have been constantly had woken up to knocks at the door at varying times through the day to move my car. Then I asked them to think about their choice to smoke so close to a persons house... and pointed to my still mostly bald head and said "Cancer!" and walked away....
So, today's thought/ question / query is... is being a grown up really just a series of procrastinations? Is it actually possible to have a completely unfettered moment with nothing looming over you? This morning I was angry and crying for being exhausted on a morning when I had a lot to accomplish. So, I got mad at myself for staying up too late the last two nights. Ok, honestly? I think I have stayed up too late for the last 4 billion nights. How many nights is every night since you were born??? 4 billion seems right. Why do I stay up late? Well, I think the reasons are simple 1) I don't want to miss anything i.e. the good part of the party/ book/ tv show/ email/the show that is coming on next etc. 2) I am a procrastinator extraordinaire. The act of procrastinating is such an art for me I procrastinate talking about or thinking about my bad habit of procrastination. Going to bed means giving up. Surrendering to the boring. I love sleep, but staying up is way cooler and more fun. Staying up late doing nothing in particular is my own personal protest to my lack of personal time. I cannot think of a moment in a very long time where I had no commitments looming over me, or I was not doing my best to forget that I had a commitment looming over me. Do I pay for my procrastination? Yes, of course I do. Did I have to scramble to deal with laundry at 8 am this morning when I could have leisurely dried it and folded it last night instead of surfing the internet. Oh wait. I was surfing the internet about work, and finances, and talking on the phone about promotions for .. work. So while I was procrastinating the laundry, I was working. This morning I am blogging to you while procrastinating something else. Do all grown ups do this? Or are there people in the world who come home from work, eat dinner and watch tv and go to bed because they have very few commitments and did the laundry and vacuuming on the weekend?? Is this a personality thing? Did being born a high energy Sagittarius who does not suffer fools gladly make me like this? Could I ever be one of those people who works and comes home and does nothing and likes it? Or would I just be bored?
Today I say- BRING ON THE BORING! The week I was diagnosed my joke was (after having no more than two years in the last 9 years without someone in my family having cancer) that I hope the next 10 years of my life is boring. I have so much more to say, but I have a lot to do today, and task number one was already put off so I could stop and sit still and think and write this down. I promised you pictures, I will get to it. I promise.
I finally yelled at the workers who wake me up to move my car from the street at 7am in the morning on many occasions. He knocked 3 times today and on knock number 2 was told by my son to wait. On knock number 3 he got yelled at. I told him I was sick of them knocking on doors first thing in the morning when they knew the night before which days they needed cars off the street. I got the him to admit that on other sites they give out paper notices the night before they need cars moved and was not sure why they do not do that here. I reminded him that not everyone works 9-5 and is up by 7. I told him (and this was the first time I used the cancer card) I had been woken up for the last 5 months all the way through chemo and I was sick of how inconsiderate they have been and how terrible the site has been. He said he knows and that this construction project has been a problem because everything keeps changing. So, even the construction staff knows this site is a mess! ?
One wouldn't think eyelashes are all that important to their world. I mean, how many times a day do you think about your eyelashes? Sex, Chocolate,Cheese Doodles.. we all think about things multiple times throughout the day. But Eyelashes? Well, try not having any...lemme tell ya.. it is pretty crazy. So this week I have eyelashes long enough to wear mascara! They are still all stumpy and wierd looking, but they are getting there! Little triumphs make me happy!
So, with an explanation that suggests a grand scale mis-communication amongst their volunteers I have had an apology from the political party mentioned in the previous post.The campaign manager and the candidate came in to talk to me about the events of the last few days. I explained all that blogged about yesterday. They apologized and explained the communication errors, and the fact that it was a coincidence that they parked in front of my store. They have however no explanation about the final email I received last night and do not know who sent it.
As the neighbourhoods have been filling up with signs for this candidate and that candidate.... I had an idea for a special sign I would like to put on my own lawn to express my thoughts about the elections on both sides of the border(I will be voting in both) After this I think I will perhaps pretend that politics don't exist and wear a big hat and sunglasses when I go to the polls.
So, I am sitting in my store after crying my eyes out because it was the only way to relieve the stress of a terrible terrible day. So, this is how the day went: I have to start at the beginning so you understand. Sometime last week I noticed a page on FaceBook about "Wellness Week". The local Dundas Wellness Week is an event held by the local business association, and lots of local businesses( including mine-Ellenoire) in the downtown area are participating- giving demonstrations, tastings, etc all discussing and displaying things surrounding wellness. On this facebook event page I discovered the info and photo that is used by the Business Association( hereafter referred to as the BIA) for their marketing campaign for the event. To my surprise it was not the BIA hosting this "event" on this page at all it was a local political party. On the page words stated on the page were/are: "Here is a list of the events that require our presence..." on this list were the events that my store is hosting amongst others. My interpretation of the page is that there is a political party planning to place people in or near my store to "spread the word" about their parties message in the upcoming national election during events that my customers will be attending. I was not happy about this. I am in business to make money, not have conflict in my store with customers and political campaigners. My store feeds my son, my store pays my bills. My store is not a place for anyone, including me and my staff to make overt statements about their personal political choices. So, the idea of a party deciding without my permission that they will be attending the events in my store with the plan to "spread the word" to my clients made me angry. I wrote a note on their wall saying that no one campaigning would be permitted in my store without permission and I suggested they ask other businesses permission as well. It was clear I was unhappy about their presumptuousness but I was not unpleasant or mean. I also stated that this was not about my political opinion at all.
I expected backlash on the facebook wall, but I did not expect what ended up happening. My comment on the facebook wall was deleted, and was replaced with a statement that they would be "contacting all businesses before campaigning" In the spirit of social media the fact that they deleted my harmless comment was a little silly, but.... This afternoon at 12:30 I received a call from someone from this party. The tone of voice used by this person seemed to me to be confrontational. The call went something like this: Hi I am from the --------- party, and I am calling to tell you that we will be attending your event(s) during wellness week
So I asked if they were intending at attend as customers... and she said well we will come with 2 or 3 of us in our party t-shirts during your demonstration and just stand there, we won't be campaigning or anything and I said "well I would prefer you didn't"
and after a few more words then she hung up the phone.
I was quite upset, trying to imagine what might happen if these campaigners being here would cause any issue with my customers. I called the head of the BIA to let her know about the facebook page. I was on the phone and 30 minutes after the phone call a car with several people in the party colours and campaign t-shirts pulled up to the parking spot in front of my store. After watching them for 15 minutes, talking amongst themselves and giving out a few of what appeared to be campaign flyers or cards I closed my store. I was so upset after the phone call that I wanted to be sure that my customers did not think that these people outside my store meant that I was affiliated with that party, or any party for that matter! For the next hour or so the party campaigners actively walked the street in party tshirts, carrying signs going in and out of stores using the car in front of my store as a base to get things in and out of. Once they were clearly not hovering around my store anymore I re-opened. Throughout the day I remained quite upset. I had not eaten well, I was worried that my simple statement on the facebook page could escalate to these things. A phone call from someone "telling" me they were coming to my events, and a group of people parking right in front of my store.... what was going to happen next? At 5pm, 4 hours after they arrived the party people finally drove away. At 5:50 I received this email from an anonymous email address. The email was entitled "Friendly" the body of the email said this: FYI, for future reference The chief Electoral Officer indicates NO-One can limit campaigning on public property and store owners who try to do so are liable for $2000.00 fine or 6 months in jail.
Have a a great day!
As you can imagine an email with an implied threat like that upset me even more. My fears came true. It has escalated again. Is this Canadian Politics? Or does it remind you of anything else? All I know right now is that my voting choices just got easier. Whether these people that chose to make me feel threatened and like a prisoner in my own store today are following party rules I do not know. If the party constituent chose to chat with me today after finding out from the BIA rep that I had received the call and about the facebook issue then I may have given him the time to apologise, or even tell me his point of view. Instead, he walked by my store dozens of times knowing there was a conflict and he did nothing. Manners? No, not from anyone in that party today.
You tell me dear bloggy bits readers. What should I make of this?
So I am sitting on the porch in the rain, well I was until I came in to make a call about some beans at the farmers market that I forgot to ask T to get and to write this... So, what I was on about.... I was sitting on the porch, with the rain falling down around me listening to nothing but the rain. It is a warm humid day with a lovely rain. Since I cannot turn into the frog I would like to be to continue my gardening(I don't think my animagus would be a frog anyway)I decided to read on the porch. I was reading the September Vogue magazine and wishing I lived in New York City so I could go to the restaurants and buy all the clothes I see on those yummy glossy pages. Then I realized that if I lived in New York City it would be unlikely I could sit on my porch and listen to nothing but the rain. hmmmm
I know you have all received emails with questions like this.... I have decided to answer the questions from this 'fun' email on here instead of on the email.
I won't be sending this out...
To anyone but my bloggy people.
Here we go.
Answers, by Noelle
1. WERE YOU NAMED AFTER ANYONE? My middle name is my mom’s maiden name, which is kind of lame, but some British tradition ..... Lumdsen?? can you imagine trying to explain that to a schoolyard full of white, blue collar 5 year olds? Honourable to my lineage I know but..... I already have to explain Noelle for pity's sake.
2. WHEN WAS THE LAST TIME YOU CRIED? An hour ago, but my blood sugar was low.
3. DO YOU LIKE YOUR HANDWRITING? Don’t care, but yes I suppose
4. WHAT IS YOUR FAVORITE LUNCH MEAT? Spiced ham with Garlic from Links
5. DO YOU HAVE KIDS? Yup
6. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU?
Probably not, I talk too much, or so I am told and I don't like people who talk to much.
7. DO YOU USE SARCASM A LOT? Rarely, don’t understand it either.
8. DO YOU STILL HAVE YOUR TONSILS? Yes.
9. WOULD YOU BUNGEE JUMP? NO, why would anyone really?
10. WHAT IS YOUR FAVORITE CEREAL? I have to have a favourite? Ok, Alpen, Weetabix, Cap’n Crunch
11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
Yes, and it bugs me when other people don’t. Not during triathlons though.
12. DO YOU THINK YOU ARE STRONG? Duh?!
13. WHAT IS YOUR FAVORITE ICE CREAM? Again…. I have to have a favourite?
Ok, Glacier Berthillon in Paris all flavours, and real Ben and Jerry's made in Vermont
14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE? shoes
15. RED OR PINK? Red and Hot pink. Light pink looks crappy on most people but especially me.
16. WHAT IS YOUR LEAST FAVORITE THING ABOUT YOU? My height.
17. WHO DO YOU MISS THE MOST? Yolande
18. DO YOU WANT EVERYONE TO SEND THIS BACK? No, don’t care- emails like this are dumb.
19. WHAT COLOR PANTS AND SHOES ARE YOU WEARING? Black. They make pants and shoes in other colours?
20. WHAT WAS THE LAST THING YOU ATE? A tablespoon full of peanut butter- organic, no sugar, crunchy ….(sorry Ross)
21. WHAT ARE YOU LISTENING TO RIGHT NOW? The Cocteau Twins
22. WHAT IS YOUR FAVORITE TV SHOW? Don’t really like TV anymore, but House, So you think you can Dance, Numbers,
23. FAVORITE SMELLS? Skunk spray about an hour after the spray from about a block away (yes, totally serious) Tree Moss absolute, Labdunum, heliotrope flowers. You really want a perfume specialist to answer this one?
24. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? I hate the phone.
25. DO YOU LIKE THE PERSON WHO SENT THIS TO YOU?
Yes, but she sent me this dumb email, so I am not sure anymore.
26. FAVORITE SPORTS TO WATCH?
On TV? Or live?
Not hockey, Not football, Not baseball, Not tennis (although I can do it for a little while)
Not golf…. Ummm I liked the Olympics a little bit.
I like to watch triathlons in person.
27. HAIR COLOR? Hair? Ummmm? I think this question might make some people cry.
28. EYE COLOR? Brown, or so I thought before I lost all my eyebrows. Then they got lighter
29. DO YOU WEAR CONTACTS? no
30. FAVORITE FOOD? This week food bores me. Fave food? PB and J. All day all the time (sorry again Ross)
31. SCARY MOVIES OR HAPPY ENDINGS? Scary Movies are the stupidest things ever invented and I hate them.
Happy Endings? Only if the story needed to end happily.
32. LAST MOVIE YOU WATCHED. Holes
33. WHAT COLOR SHIRT ARE YOU WEARING? Black…. What do you think?
34. SUMMER OR WINTER?
You mean what is it outside right now?
Or which one do I like? It is summer outside. I like all seasons. Weather does not affect me. I look out the window, I dress accordingly.
35. HUGS OR KISSES? Unless I know you really really well I actually would prefer you don’t touch me at all and ya I am dead serious.
36. FAVORITE DESSERT? Ok, again with the favourites thing.
As long as it has real chocolate in it, I will likely eat it and will be polite about liking it whether I do or not.
37. MOST LIKELY TO RESPOND? To this email? The one I am not sending to anyone?What do you think?
38. Least LIKELY TO RESPOND ? NEXT!
39. WHAT BOOK ARE YOU READING NOW? Can’t remember the title, it is about 18th century London and an apothecary.
40. WHAT IS ON YOUR MOUSE PAD? Don’t use one
41. WHAT DID YOU WATCH ON TV LAST NIGHT? Nothing, I did dishes and made plum jam
42. FAVORITE SOUND? Silence
43. BEATLES OR ROLLING STONES? Beatles
44. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME? France and Chemo... they were both far far away. France was nice though.
45. DO YOU HAVE A SPECIAL TALENT? I sing better than most people know.
46. WHERE WERE YOU BORN? Saskatoon
47. WHOSE ANSWERS ARE YOU LOOKING FORWARD TO GETTING BACK?
Not sending this to anyone…. I keep telling you that.
Cheers!
N
Thursday, September 4, 2008
I had 4 BC/ cancer/chemo people in my world today. A new employee at the food shop across the street from my store pointed at my head and said "chemo?" and told me that she had BC and chemo and recon.... in .. well she could not remember what year.. it was a kind of funny. Then I had a woman in a wig ( yes, sadly I can almost always tell which I why I don't wear one) come in about some skincare stuff that I market for chemo-ed out skin ( which is still stuck at f*$&/@ing customs) but we had a good chat and I sent her to this site because her support group ended..?! Then I had another person with a type of lymphoma who has seen me on TV, and after she paid for her soap she gave me a BC t-shirt that she said "I bought this for myself, but will never wear it- so i thought you should have it" Theeeeen I had another woman who had curly hair from chemo, but insisted on arguing with me about her hair for about 20 minutes (I am a pain in the ass about curly hair when people argue with me, I warn them from the beginning of the demo/sales pitch and I always win every argument they throw at me)
It was an interesting day.
I have to take a pic of my hair for you, I look like a very funny little bird with a strange shadow of eyebrows.
Locke St festival this weekend!!!! Saturday the 6th
Come and see me, we will be in front of the Transit Gallery at 230 Locke st south in Hamilton.
It's been a week already??? I work, I Twitter( microblogging, see the feed to the right), I blog in my head all the time. If there was a way to auto feed my thoughts into my blog I could avoid this typing thing that hurts my hands anyway. Between my nails falling off....( oh yes my nails are falling off!!!) from the chemo and the fingertip pain from the chemo and this new strange phenomenon of my hands hurting after any activity that I use them a lot. i.e. swimming, gardening... mmmm typing!!! I guess when my mom's nails were a mess near the end of her chemo I did not understand why... but now I understand that nails are also a fast growing cell just like hair so why wouldn't they get damaged???
So this last few weeks has been nuts! Trying to have fun before summer ended, trying to train for the potential of racing this triathlon, trying to spend time with my kid etc etc. Oh, and then there is this annoying work thingy that keeps getting in the way! I was on TV last Thursday on CH Morning Live, and dragged my tired ass to the EX with Luke and his pal. Thanks to the construction workers here in the Witherspoon hell pit I did not get a nap. So up at 4:30am, work for 3 or so hours, then off to 7 hours of walking on concrete. Have I ever mentioned I hate junk food ( well except for cotton candy and it is not on my diet) and rides?? So imagine me at the freakin' EX! ?
We have yet another street festival coming up this weekend- The Locke Street festival Sat Sept 6th. Drop in, say hi, rub my fuzzy (yup, you could actually call it fuzz now, not stubble!) head and then, well you know.... buy something!
So, about this triathlon thing. I did it. I raced the darned Women's Tri( super-sprint distance 375m swim, 10km bike, 2.5km run) in Milton on Sunday. I had a "Swim Buddy" to help me through the swim portion just in case I freaked out. God love her, but I may have been faster if she did not chat with me the whole time. But hey! I was there to prove I could race again... so I listened to her chat. The bike portion was a breeze (I hate to say this, because now y'all won't think I am sick anymore) and the run suuuuuucked. Running has been and will remain my hardest sport of the 3. I may be a slow swimmer, but it does not really scare me anymore. Cycling? well how could that be hard? Running? in the sun( curse the women's tri for moving the course into the open sunshine- the old course was waaaay better) wa hot and hard. I pulled a Whitfield at the end, and tried to sprint to the finish, but had nothing left and let the girl behind me pass at the last minute. So, I had my kid run the last 50m holding my hand... but I did it.
I finished a triathlon 6weeks and 3.5 days after my last chemotherapy. Ya hear that cancer???
The studies say that ( quoted from my smartypants swimmy pal in my BC support group)
"women who stay, or become, physically active after being dx'd with BC have a better chance of survival. They're talking about a reduction in the risk of death of 67% from 2 or 3 hrs of "brisk walking" per week during the year before and 2 years after dx. Women who were "sedentary" pre-dx could reduce their risk of death by 45% if they increased their level of activity to 2 or 3 hrs of brisk walking per wk during the 2 yrs after dx.
This is the original article: M.L. Irwin, et al. "Influence of pre- and postdiagnosis physical activity on mortality in breast cancer survivors: The health, eating, activity, and lifestyle study." Journal of Clinical Oncology 26(24):3958-3964 (Aug. 20, 2008). It was highlighted in a lot of news releases this past week"
So cancer? I will take your walking "2-3 hours of walking briskly" and raise you by 2-3 hours of triathlon training. SO THERE!
I am off to some hand hurting gardening ( y'all know how much I love the garden right?) in the last 3 hours of day 1 with my kid in school.
Shout out to my mom's late in life pal Jeff Goodes host of CBC radio's Fresh Air, apparently a note about me and the tri got to him and he mentioned it on the air on Sunday morning. If any of you heard it tell me all about it. Thanks Jeff!!!
I am on a 'diet' trying to lose some weight after that chemo nightmare. It is slow going, but I am not giving up!
We went out last night to dinner and the theatre. We went wandering in the city and tried on clothes. YUCK! When you are used to being a 6-8, trying on 12-14 is a total drag. My cute BF who has been training for triathlons all summer got to buy some lovely new sweaters to show off his awesome pecs, and I got one shirt that I pray will look ok with my foob.
Being at the theatre was fun!, we got to see the show Avenue Q in Toronto which I have been waiting years to see! What a blast! The stares at my bald head from the normals was oooh soo much fun too! ;) Man, we were seeing a show with puppets having sex, how could I be wierd looking???
Tomorrow I have a hard workout day, to test myself to see if I am actually going to try and do a mini race on the weekend. My kid is away for his last summer fun at a pals cottage and I am taking 2 days with no kid, no chemo side effects and no cares... as much as I can get away with anyway!
I am having a lot of trouble focussing on work today. A friend of mine's son died in his sleep on the weekend, and I am having trouble caring about stupid things like sales and taxes and such. I am at the store, and I promised some other friends I would give them skin advice to take care of their skin after chemo was over. I am not dreading doing the writing, but there is a restlessness I feel and sitting still to type is not working. So, I am going to try.... Skin care 101 Step 1 Exfoliation 2-3 times a week your skin must be exfoliated. If you do not exfoliate you are wasting your money on lotions and balms. Lotions etc simply will not penetrate dead skin. That said, exfoliating has to be done with some caution. There are 2 kinds of ways to exfoliate: Physical and Chemical. Physical means use salt, sugar, pumice etc or tools like loofah, and other scrubby devices. Personally I have always preferred scrubby gloves for my regular exfoliation head to toe. I use salt and sugar scrubs for occasional exfoliation times. Chemical exfoliants use ingredients like alpha hydroxy acid, fruit acids, glycolic acids etc. Face and décolleté should be exfoliated gently with sugar, chemical or finer grit scrubby devices.
Do not exfoliate broken skin, or open sores. On keratosis, psoriasis and excema use extreme caution and when using product only use unscented, natural and sugar based exfoliants. I do not shower everyday, so I exfoliate whenever I shower.
Step 2 Moisturization The best times to moisturize are directly after bathing, or before bed. Body and Hands- when skin is still wet from bathing or showering slather on a rich lotion or balm, or body butter onto wet skin, then wrap in a towel or robe for a few minutes. If your skin is oily then use lotion sparingly in those areas. Face- when skin is still wet from toning ( yes toner is an important step for facial skin for those over 25, or with acne issues) add moisturizer in morning, and at night or whenever face is washed.
Step 3 Maintenance - If you follow steps 1 and 2 regularly you will see a huge change in your skin within a few days. To Maintain it you can skip the occasional day here and there, but skipping more than a week without these steps will make you skin go back to rough, and dry. Let me know if you have questions, or want to buy products that will fit what I have described. I am off to the post office to clear my head. I will update more about how my chemo recovery is going ....soon I promise. Suffice it to say..... I worked a 60+ hour week at the store last week and lived to tell about it! cheers!
So, today is a hard day at the hell pit called the cancer centre here in Hamilton. I am typing this while in my vinyl laz z boy (who the hell thought that was a good idea I don’t know) with the IV in my arm
In the 2 hour wait for my herceptin treatment to start I watched a couple next to me. I was sure by the deep sadness in the mans’ eyes that he was the one with cancer, but when I searched for the telltale signs I could not tell which one of them was the patient. I eventually saw the hospital bracelet hidden under her jacket cuff. Something told me that I should be talking to them.
Understand that it is not normal for people in this waiting room to speak to each other. I chalk it up to the Canadian habit of keeping to yourself. Ultimately I ended up chatting with the woman and learned that she has colon cancer that has spread to her liver. Once cancer spreads as you may know you start to be in an area of treatment that is iffy. Cancer in one spot has a better chance of being controlled. She has been in a treatment for a year and is understandably scared and her husband is terrified!
I don’t think I have ever seen a person with a sadder look in his eyes. I made the odd choice of telling them about my mother and her death from cancer. The husband asked me a lot of questions about my mother and what treatments she sought and strangely about my own mental health and depression and I had no idea what to tell him. He was so painfully depressed about his wife and so surprised about how upbeat and strong I seemed and I was useless at telling him how or why I was like that.
I was born under the sign of Sagittarius and we are notoriously strong and steadfast?!
I come from a long line of feisty and strong women who have handled lots of emotional turmoil in their lives? I am a triathlete so I handle pain and suffering better than most?!
What could I tell this guy that might help him wake up and be in a happier place tomorrow? Powerless to the utmost... All I could mutter when they left was to smile and that I would pray for his wife.
The magazine article I was reading comparing the iphone to the blackberry seemed a total waste of time now. I was affected by this mans sadness more than most things since my cancer diagnosis.
Am I handling this better/ differently than other people? If so... Why?
Why is this fair? Shouldn’t the more terminally affected by graced with the strength to deal with this better?I can only hope that something I said or did make those people have a better day/ week … whatever….
This is the lyric that came on as I wiping away tears when that couple left the chemo room....
Relevant? I don't know... but the words and memories of the song made me cry....
At the point of the knife, you never see anyone and the strong will survive at the end of that gun.
We Run by Drew Arnott (Strange Advance)
You're on your own and meet a friend Who doesn't kill but wounds for life The sun blinds you through the trees While watching clues fall from the skies And she smiles
Chorus
At the point of the knife You never see anyone How the strong will survive At the end of their gun We Run...
Frozen smiles for men returned They never even left this place She kissed me softly on the cheek And a shadow cut across her face
Take heart the fountain of my life and stone the victim to his knees I've got scars for my mistakes And now post atomic dreams I dream...
Chorus
I walked for miles and miles to the sea We burned, the fire from the sun I know you never tried to deceive Who can touch us when we run
Shelley, to answer this mornings question about white flour vs rice flour.... anything white is usually your enemy when it comes to a healthy diet. White rice, white flour, white sugar and most of the time potatoes. Rice, unless it is brown is pretty high glycemic.
For the rest of you I will paste the diet details I mentioned to Shelley in a comment this week. This is the eating plan I have switched back to after chemo. During chemo I ate whatever tasted ok with my chemo mouth, and whatever sat well on my chemo stomach. With the bloating from the meds and the lack of exercise I gained almost 15 pounds. I have lost 4 since chemo ended, and it looks like that was mostly fluid. The rest of the weight loss will be hard work. Here are some simple details on my eating plan.
Here is my fave breakfast on the run/ snack to keep in the fridge. 1c plain (no not vanilla) low fat yogurt, 1c frozen or fresh berries, 1/2 cup plain oatmeal. Layer oatmeal, berries and yogurt in that order in a big bowl overnight or for a few hours and stir. Add a small amount of brown sugar or real maple syrup to taste.
The plan is not that different from South Beach. The website I use to choose my food is www.fatwars.com. It has a fairly good glycemic index (the speed at which your body converts food to sugar in your blood ) list. So, the ,simple idea is you choose your foods mostly from the low glycemic list and rarely from the high glycemic list. ie. White Bread= high glycemic an Apple= low glycemic.
Rule #1 no juice or soda pop (no not even diet, artificial sweeteners are bad for you, and make you crave other sweets) I still drink coffee with a little brown sugar but other than that I drink water
Rule #2 you can have 1 cheat meal a week, I used to do it on Sunday night and have a meal with all the bad things I wanted and dessert. A little bit of dark chocolate ( no not a candy bar, and no milk chocolate either) a day is fine to satisfy a craving.
Rule #3 No white rice, No white sugar and avoid white and enriched flour products like the plague(white bread, white pasta, most cereals) When I lost the big weight in '02 I did no wheat, no rice and only a very small amount of brown sugar. If you choose whole/ sprouted wheat products with no white/ enriched flour in them you can get away with a little bit of wheat. Do not assume a label that says 'whole grains' means it. Check the ingredients carefully. Enriched flour messes with the hormones in women.
Rule #4 no eating in the 2-3 hours before bedtime- this REALLY works. I have a nutty few weeks ahead of me, and then i hope to have a few days off to relax and train for the tri I want to do at the end of August. Cheers! N
I am in a crabby mood. Waaaaaay too much to do to get ready for this cursed cactus festival. I feel like I am in a movie and everyone was right.... I am cured and everything will be back to the way it was. I am overworked, overtired and not handling it. I have too many balls in the air and if I drop any things won't work out.
In MY movie I have a few more weeks of time after chemo before things get nuts.
My old pal Sally told me I do not suck for not writing for a week. My thought for you at the moment, when I am supposed to be eating my boring ( yes I made it, so it is my fault my damn lunch is boring!) lunch is that you should all watch my twitter feed to the right. That's right, look to the right side of this bloggy page and see. That is my Twitter feed. I update it all the time from my phone and my computer and such. If I have not blogged, then read my Tweets, they are like my micro blog... it will tell you what I am doing and how I am feeling. Even better, sign up to twitter.com and "follow" me on twitter. I am called Ellenoire on twitter.com Try it, is is fun, and you will be soooo coool if you do! Not everyone is doing it-YET! More soon. N
as usual I suck! I will write tomorrow I promise. almost 3 weeks out of chemo! I feel much closer to myself, but far from well or right or normal. Happy Tuesday, I will talk to you all later when I get a lull in the activity in the work day at the store. I havta go to bed lest I be a grump in the AM. Cheers! N
Swimming, swimming, in the swimming pool When days are hot, When Days are cold , in the swimming pool Breast stroke, side stroke, fancy diving, too Don't you wish that you never had Anything else to do, but... *A free Bath Bomb to the first 5 people who call 905 627 9379 or come by the store tomorrow( July 29th) and sing that song to me*
I figured out that the last time I swam was just before my surgery in Feb. so today was a triumph! I was not allowed to swim in public pools while on chemo because the bacteria levels are too high for a compromised immune system. I am now on day 13 after my last chemo. I am still very tired, and expect to be for some time now, but I decided my immune system should be able to handle the pool.
I managed a veeeery slow 500 metre swim stopping every 2 lengths to catch my breath. I passed most of the old people, but the pregnant one was faster than me! I could only manage mostly breast stroke (can we find a new name for this one???) and some kicking drills My surgery arm is a bit of a hindrance in some strokes though and it will be sore tomorrow.
I was saying to Tim this week that the chemo pain from Taxol, was different from the pain from Neupagen, and they both are different from plain old -I overdid it at Pilates last night -muscle pain.The Chemo pains seem more poisonous to me... anyone else on chemo feel that?? I wonder what will happen moving forward...?
The best parts were.... A) Having the old old old people (who have been in that lane since b4 I was born and think they own the freakin' pool) in the slow lane staring at me wondering why I was there with them. I was armed and ready with the snappy comeback if anyone made a crack at me. Eventually I moved over to the medium lane because the old people could not swim in a straight line!
B) Just b4 the session was over I realized I was going to have no choice but to shower and change in front of people after the swim. I wondered, Do I warn them about the 8 inch mastectomy scar b4 I take my bathing suit off? Do I attempt to hide myself in the corner of the communal shower area? Or Do I just say screw it and shower and change like everything is normal? Well, once I remembered that I also have no pubic hair, I figured a combo of hiding and acting like everything is normal was the only choice. No one flinched thank goodness... but when the woman next to me in the shower started soaping up her big boobs and rubbing them round and round like a porn star in a shower scene (man, how dirty could her boobs be? I asked myself) I reeeeaaally wanted to turn to her with my hands on my hips and yell SHOW OFF! and storm away.
So, here I am sore and tired with my first swim in 6 months, and my first real workout in 4 months ( I managed a few workouts after my first chemo) ready for a mid afternoon nap, but I did it.
I have lots more to tell all y'all about the last few days since chemo ended, and I promise I will soon.
1) What I do not get is why my prosthetic has to be so damned heavy. It hurts my scar, it hurts my shoulder it is stupid! I am an perky A cup so having a pound of rubber on the one side is totally foreign. My prosthetic is an adhesive one (what a riot to have a stick on boob, let me tell ya) but they say it is too soon to wear it that way with such a new scar) Don't even get me started on finding a mastectomy bathing suit for competitive swimming! NOT one of the companies that makes suits for athletes make a mastectomy suit. Somehow doing a triathlon in a Sears or Lands End mastectomy suit will not seem right.
2) Today I had someone ( a total stranger who knows about me through my store I guess) asks me "how are you doing" and I said well chemo finished a week ago so it will be sometime until I feel normal again but today is a good day. She asked again "but you are fine now?" I gave her some answer but it upset me a lot. I was standing there bald, and clearly lopsided in my tank top, a week out of chemo and some stranger wants me to tell them that I am healthy????
WTF???? Yes dear stranger lady, my boob grows back a little each day, just like my hair and those cool doctors cured me with that magic medicine. It was just like a vacation really!
3) It has been one week since chemo finished. This emotional roller coaster is a whole new set of things I did not anticipate. I have no chemo to " look forward" to this coming week. I have no medical appointments, and no tests for another 3 weeks when I start the antibody I have to have for another year. My BF reminded me that since December when i found the lump, nothing has been normal and since I was working my busy season then it meant I had been working 50-60 hours a week for 7 weeks at that point- which of course is not normal. Soooo, that means that my life has been somewhere south of normal for damned close to 10 months.
So, I will blog more in the next few days, but I am not sleeping well and my feet and hands are all goofy and tingly from the Taxol. I am off to try and sleep.
‘Twas the night before chemo and all through the house Not a creature was stirring not even a mouse The steroids I set by the bedside with care Praying that sleep might happen near there.
The night before chemo I like things all clean From low energy ‘n-sore legs the house is a scene! The kitchen is messy, the laundry a heap When the steroids kick in, I'll clean and I'll sweep!
Tomorrow is Taxol I think with a shudder, So glad that this drug is better than the others The nausea! The mouth sores! The headaches! Oh my! With Taxol I just need a wheelchair to get by
My stomach is yucky, all tied up in knots I'll never get used to the pills and the shots The doctors, they mean well but what do they know? They should try it sometime, now that'd be some show!
Here's prune juice and flax seeds and bran flakes for you I do hope this mixture will allow you to poo If not then drink water and go to bed in tears Don't worry your patients have been doin' this for years!
On barfyness, on tiredness, on painful fingernails No side effect can take the wind from my sails I'm bald and I'm fat, but what do I care? I look in the mirror and it's ME standing there
This cancer it scares me but the end is in sight Treatment's soon over and all will be right I hope so, I pray so, I dream it will be ‘cause chemo is a nightmare I don't care to repeat!
So today's plan is to go and yell at my doctors for not making it clear that my "chemopause' (chemically induced menopause) may be permanent and that they should have told a woman of childbearing age that this could be the case... the funny thing? I think I am getting menstrual cramps... not sure, it has been months since I got them last... but I think the timing is freakin' hilarious. I hope I start my period right when I am scolding them for being such insenitive asses! I am off to the poking and prodding part of my week. Cheers!
As I sit here having a hot flash, exhausted from a sleepless night I would like to to peel off my chemo riddled shell and fly away to eat a fresh picnic in a meadow somewhere in the body I used to know.
In my store last week, my pretty upscale fragrance and soap boutique this woman comes up to me at the back of the store and says: "I hope you did that on purpose!"
I stared at her thinking.... what on purpose? cut my boob off? or my hair? which dumb question are you asking me lady?
I politely replied What? My hair? No, I am in chemo....
I wanted to say "yes, and next week my store will be filled with skulls and beds of nails and my swastika tattoo will be on above my right ear!" and stick my tongue out at her. LOL!!
Day 6 of treatment 7 ( Taxol #3) and I am better today than I was yesterday, and yesterday I was better than the day before that. This Taxol tx was a nightmare(ish). Still nothing compared to the AC tx's but a nightmare is a nightmare.
So, Sunday (day 4) is my worst day. Ton's of pain, pain in everything south of my eyeballs. NO, I am not kidding, my teeth hurt, my finger tips hurt, my ab muscles hurt- and the shooting pains?!!!!! They were everywhere. I was barely awake and the phone rang, it was my sister ( hey, if I blog is not for venting than what is?) calling for the first time in weeks. She still wins the sibling race for calling though. My big brother( who mom forgot to tell us about for 20 years, but is in our lives now) was here for a week after my surgery and helped a lot with mom's living with cancer and her death last year. He called the day he got home in Feb and has not called since. he does not even know I am in chemo. Normally he does not call often, it doesn't bug me "normally"
My little sister is a single mom like me. Unlike me she has a full time job with benefits. I am (happily) self employed and I have no child support(he left the country and cannot be found) or benefits at all( and if you read this blog you know how expensive being sick has been for me) she is too lazy/ scared etc(whatever!) to do the work to get her ex to pay his share, and complains about it all the time. She will receive a bunch of money this year from mom's estate. In very simple terms she got cash, I got a house. We both are very very lucky as far as I am concerned. I hung up on her on Sunday when she had the balls to complain about money and that she had to take extra summer work .... She is a teacher and has the summer off but is choosing to work to make MORE money??
Meanwhile her kids have to be away from her all summer so she can have MORE money???
I counseled her through being beat up by her 6 figure income husband, I counseled her through mom's dying (when she bothered to show up to see mom), I helped her budget her way to getting out and getting on her own 2 feet etc etc. She has not shown up here once, not to see me, not to take my kid, not for anything.... but she "thinks about me all the time"
My brother, my sister and some of my best friends have been mostly absent during my whole illness and although no one is surprised it does not take the sting away.
Isn't it all too bad? Just once I wish the selfish ones could see themselves for what they are and how they hurt people around them... because I am convinced most of them have no clue.
“Natural menopause is a fender bender, whereas medical or surgical menopause is like hitting a brick wall at sixty miles an hour. ” I heartily concur!!!!!
I hate the cancer centre!!!! Yes, the lovely, caring Juravinski bullshit Cancer Centre.... is a godforsaken hell hole in my opinion. After 3 hours in the place and dealing with farce after farce of communication nighmares I am finally home. No one told me the heart scan would take an hour, so my plan to have lunch in between the appointments did not happen. So I did not get to eat. 2 weeks ago my new nurse suggested my pending heart scan be set on the same day as my bloodwork for convenience. It seemed to be forgotten that the heart scan needed 2 needles and bloodwork needed another, and tomorrow for chemo I need another. That means 4 needles in one arm in less than 24 hours. Because of the lymphadema (arm swelling from the fact that they removed lymph nodes) risks on my surgery side, I cannot have needles there. 2 more chemos to go and I am NOT getting a port(a surgical insertion of a needle entry point that makes it easier for the nurses to draw blood and give IV's)
I waited for an hour to see the doctor and reminded the nurse that we had 5 minutes to get my prescriptions in to the pharmacy and they looked at me like I had screwed something up.... then I asked the Nurse about the menopause symptoms, and told them that I had to find out about "chemo induced menopause" on the internet, and that they should have told me.... I asked if I (41years old) should expect this to be temporary which i assumed was the case... they said NO!!!!!!!!!!!!
Not only did they not bother to tell me these symptoms might happen, but now I find out that this may be it for me! Did it not occur to them that this may be important news? Having a child after 40 is certainly not unheard of- no one asked me if I had considered having more kids... Again I ask... Did it not occur to them that this was important news????? So, as I was being raced out the door to the upstairs pharmacy, the Doctor stuck his head in to say " everything ok? Do we need to talk about anything this week...?" I told him I was upset with the menopause issue and asked about another prescription that they forgot to mention he said we can talk about it next week and raced upstairs to get in the pharmacy before they closed. Perhaps the hospital scheduling fairies should not schedule 4:15 appointments that involve prescriptions to be filled by 5pm HMMM??? Oh, right... they don't care about my arm with 4 needles in 24 hours, nor do they care about the end of my childbearing options, why-ever would they care about the fact that I might not get my pre chemo prescriptions the night before chemo??? So, at the pharamacy I slipped in just before they slammed the door in my face and got told that my drug card was not working and I had to pay for my steroids in cash. So, the annoying visit from the nurse yesterday that is supposed to keep my drug card activated clearly was a total waste of time. So tomorrow, from the chemo chair I will have to have Tim and the social workers fight with the pharmacy so I can get the drug card issue fixed and get my white blood cell booster(neupagen) that is $3000 per month and not covered by OHIP. YIPPEEE!!!! Can you see this being a fun day??? So, defeated and upset I left the place to find that the elevators to the parking lot were not working. So I slowly climbed the 4 stories to my car(glad I am not 80, or that it was not a chemo day) and got in, out of breath from the stairs and burst into tears. I have cried often through this cancer ordeal but this one was one of the worst episodes. I called Tim, calmed down and drove home, stopping for a bagel (not great for the weight loss, I know but I was hungry)on the way. Did I mention... I HATE the Cancer Centre?
Today, aside from feeling tired I feel almost normal. I hesitate to say it, but I do. The last few days have been almost easy. I am going to do some gardening and some napping in the new lounge chair in the garden. I will write more later, I promise. Happy Holidays everyone! N
So, on the new chemo called taxol that I started on with the last round I sleep a lot less, have a ton more energy and far fewer side effects than the last chemo cocktail I was on... The painful finger tips and insanely sore back and legs seem to be a happy trade off for the mouth sores and digestion issues from before.
Yeah me! Buuut.... now all the things I had no choice to avoid- a messy house, piles of unfinished paperwork, 10 -15lbs of weight gain.... The vain part of me is most upset about the weight gain. I have been eating as well as I can, but with the steroids, the chemo and the lack of activity I have gained weight faster than I could have if I had planned it intentionally. If I had known I would have had eggs benedict for breakfast, snacked on donuts and had pasta for dinner every day and at least had fun gaining this much this fast!!! In 2001 when I was growing my business into a full time job and my son and I moved in with my mom I got fat for the first time in my life. I quit waitressing, quit smoking and sat at a computer building the business and unsuccessfully internet dating. In 2002 I woke up and realized I was the heaviest I had ever been in my life... That summer I worked hard to lose the weight and I went from a size 12 back to a size 6-8 and have stayed that way ever since. Last week I took my summer clothes out, and could not do anything up. If having cancer was not depressing enough, if feeling crappy all the time was not hard enough ... I have to deal with this? Is this God's idea of teaching me something? If so, I don't get it! As you know I feel pretty gross physically from all the chemo side effects. Everyday someone tells me I look good(and yes, EVERY time I want to punch them!) So let's analyze that shall we? I look good? as opposed to what? Looking like I could die any day now? Well, one reason my face looks good is that the chemo flushes my face with colour, puffiness, and fat... so I don't look pale and I have no wrinkles. Bald with puffy red cheeks may be a good look for a newborn but... Oh, and the fact that I run a skin and makeup store, so I am an expert at fixing and hiding flaws on my face... and no one sees me on my worst days because I don't come out of the darned house!
Anyway, so clearly the first set off chemo drugs had me so knocked on my ass with side effects and exhaustion that I did not notice how much my body was changing. Now I have noticed I am annoyed.
Don't be surprised if you see me around town on my fun new bike, or using my son's new nordic walking poles trying to work some of the weight and frustration off. I guess, I am ultimately thankful that I have this newfound energy to even consider working out. I have chemo #6 tomorrow, so we will see if I am right about the energy levels staying up...
Someone who is a regular on my blog comment list has asked me to tell about how I found my cancer so here is the story... One night in late December I was getting undressed and accidentally hit myself in the left breast and felt something that was not right. I investigated and found a lump. I tried to express from my nipple(I used to have a hormone imbalance that made me produce milk, long b4 I breastfed my son, so it was a knee jerk reaction to finding the lump). I found I could express blood. Without a second going by I was on the internet looking up info about the blood and called my girlfriend in Chicago and called Tim. I can't recall which order I did this in, but this is what I did. Tim and I agreed that I would call the doctor ASAP in the morning. After dropping Luke off I was about to call the doctor and Tim called and said "why don't you just go straight there" So, I went to the doctors office, burst into tears in the waiting room and got put into a room to wait until the doc arrived. An intern saw me, and then the doc. Everyone agreed it was likely a cyst, but the blood was a concern, so they scheduled an ultrasound( I am too young to have mammograms yet) It took all the way through Xmas until early Jan for me to get an ultrasound, and within 15 minutes of getting the ultrasound they had me into mammogram and biopsy. 4 (or more, I was pretty upset by this point) biopsies later I felt like I had been mauled by a tiger and got sent home to wait for a week until the following Friday. A week later I had heard nothing so I assumed things were ok and had a great weekend. On the Monday I had my appt with the doc for follow up and had to take Luke with me as he was ill. As soon as I saw my doctor's face in the waiting room I knew I was wrong about being ok. We left Luke in the waiting room and he told me that the biopsies were positive, there were 3 lumps in my left breast, and something in the lymph area. I cried and was totally shocked when he said mastectomy was the best option over lumpectomy, and after then a few minutes I composed myself and collected my son to go to Tim's house and tell him. The rest of the story is pretty easy.... specialists, surgery, recovery and chemo... I will likely write later today about this new chemo. It is no more fun than the last, but I am awake more. I am off to plant a few things in the garden b4 I have to go to work, which I am dreading today, as my back is really really sore all the time from the new chemo..
So, it is almost 3:30 am the night b4 chemo #5. This chemo is a new drug regime for the next 4 treatments leading me to mid July. I get a pile of steroids to take the night b4 and I am wired and wide awake. This week won the prize for people saying the stupidest things to me in the store about my cancer. "Congratulations!" she came in and said... I said "for what?" she said " I hear you are doing well on chemo!". So, at this point I am gobsmacked, speechless... stupified... Congratulations? she has to be kidding.... here I am bloated, bald, with one boob, having no idea whether the treatments are working or not, whether the cancer has spread or not(not even my doctors know this right now)and I get Congratulations for doing WELL on chemo??? She even 'High fived' me for goodness sake. God help me keep my composure and not hit her back somewhere less socially acceptable I kept saying to myself.
So, tonight I am going to tell you the truth about chemo so you can decide whether I am "..doing well on chemo" or not. Beware, I have been mad about this for days and am awake in the middle of the night so this may be more honesty than you can take. I think I have told you that there are no side effects on the official list that I have not had since this all started. Almost every side effect has some medication associated with it, I will leave it up to you to keep score on the number of meds I take.
1) Mouth and Throat sores- the inside of my mouth is constantly inflamed with painful sores. Some days a drink of water hurts to swallow. Think about that for a minute!? My throat regularly has sores in it that close it swollen shut so I cannot swallow. Last week a pill got stuck in my throat and would not go down for 5 minutes. I could not spit it up, I could not swallow it, I just had to try not to panic and hope it went down on it's own... fun huh?
2) Food, Digestion and the funny taste in my mouth- I can only eat things that don't hurt my mouth sores. My mouth has a horrible metally/ ash tray taste in it all the time so food tastes crappy. Almost everything gives me painful gastric reflux and burning indigestion. The first 5 days after chemo I take anti nausea pills like candy to keep from throwing up. The anti nausea meds have their own side effects. Even with a diet high in fibre and fluids I get horrible digestive issues from them. This leads to another set of side effects.
3) All things associated with the bathroom- Looking in the mirror sucks! I am bald, bloated and overweight(gaining 10lbs and 2 dress sizes is not normal in 2 months) I experience mind numbingly painful, tears streaming down my face, worse than childbirth constipation from the anti nausea meds. It hurts to pee from some other issues(see Menopausal symptoms)Brushing my teeth hurts(see mouth sores)All in all I hate the bathroom....
4) Menopausal symptoms- Temporary we hope, but I have them all. Bed soaking night sweats, mood swings, hot flashes, loss of menses... go ahead look up menopause.. I have all the symptoms.
5) Exhaustion- last week I had one day when I slept for 20 hours! Some days it is only 3 naps in the daytime, but I have to sleep a lot! Climbing stairs hurts my legs and makes me out of breath- really I assume this is what being 80 feels like!
6) and on and on... joint pain,dry eyes, brittle finger nails, too much sleeping, wide awake on steroids, loss of appetite, can only consume liquids somedays etc etc... I could go on forever.. but I think you get the point. Chemo knocks me on my ass with hard core tiredness and side effects for roughly 10 days per month. I work 12 days a month( with side effects the whole time). I am in the hospital for 4 days a month for treatments and appointments. You do the math. A little work at the store and a lot of work getting healthy is more than a full time job! So, now do you think I am "..doing well on chemo!"????????
and tomorrow,this new drug will give me all new side effects to learn how to go to war with... God only knows what happens then. G'night all!
Noёlle's news from the ellёnoire boutique and beyond! Natural Fragrance, Skin Care, Hair Care, CURLY Hair Care and Natural Nutrition to complete the circle! .. and I'll never forget to talk about...cancer!
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