THE DRAINS AND OUT!!!!! HIPPEE KI AYYYY MO FO. I could not be happier, really thrilled. Cape Cod here we come, ohhhhh yeahhhhhhhhh
Friday, July 31, 2015
Yesterday versus Today
Yesterday was plain awful but that's not now that's then! Sorry a little musical Annie today, just be glad you aren't here to HEAR it, you know I love to sing like a cat in heat and dying. I was pissed, exhausted, annoyed, and weepy (yes weepy). I had myself a day of crying it out with some good girlfriends, 8 kids, a husband, and some long distant friends. I hate crying it makes me feel like a pansy, but my peeps made me feel strong. I am pissed that breast cancer has messed up my summer, changed and mutilated my body, has made me so effin tired, and has controlled me. I want to sit in the sun and watch my kids play. I want to make them dinner. I want to not look down and see my body so altered. I want to do more than go get cleaned up without being exhausted. I want to say when I go on vacation. I WANT AN UMPALOMPA!!!! I sat yesterday and cried and had my hand held and my girlfriends say they were thankful I was finally letting it out, boy did I release it yesterday. I love that people want to help me through this but its hard unless you have been through it or have boobs. So, please bare (chested only) with me and just stand by my side until the weepy bitch is gone and the regular bitch is back (I could have sung Elton John here but I do not want to go over board). But today..........
Heebee jeebees!!!!
Do you ever wonder about new cancer treatments and their potential side effects? As medical research capabilities advance, so do the weird things they do to our bodies. Surgery used to be where they cut you open and take out the bad things. Now they leave little markers behind or radiate you (intraoperative radiation) while you are sleeping.
I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.
Nano particles sometimes are used as carriers of medicine but I hope they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????
I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.
What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.
I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.
Nano particles sometimes are used as carriers of medicine but I hope they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????
I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.
What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.
free to a good home (part 2)
A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:
Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.
Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."
Imstell jumped in with the following:
"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:
FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.
WANTED swimming prosthesis. Any size large enough to hide my belly.
These had me laughing out loud but I think we might actually get something like this going.
Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.
Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.
We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.
some further and disjointed thoughts on my blogher09 experience
A non-virtual connection with Melissa from Stirrup Queens (and author of "Navigating the Land of If"). We are both holding Nora's head on a stick.
1. If Twitter was played a role at last year's BlogHer conference, this year it was front and centre.
Many of us followed what was happening in other sessions we attended by following the keyword (called a hashtag with a #sign) blogher#09. These are my tweets from the session I attended about "Online Safety for Your Kids Who Are Online Themselves" (I had expressed in my previous post the concern that it would be all about scaremongering but was delighted to find that it was not):
"if you are an engaged parent you have less to worry about in terms of sexual predation online" #blogher09 session on online kids.
it never occurred to me to worry about kids taking pics at my son's sleepover b-day party. should i have? #blogher09 kids online session.
"every technology brings with it new fears." the take away - don't panic! i love it. panel on kids online #blogher09 do you post photos of your kids online? on facebook? flickr? #blogher09
"identifying information that your kids put online has NO correlation with sexual predation." #blogher09
"reputation management" never heard this before in online context. interesting. #blogher09. your photos and words may come back on you, kids
"we are tethering our kids" "we are raising our kids in captivity" - this is the way times have changed. #blogher09.
2. In the closing keynote, the subject came around again, to Twitter. One commenter likened her Twitter community to a support group "I think the women I've met online in the pregnancy loss community have saved my life" (I didn't get her name or blog. Let me know if you did). A powerful statement, but I can relate. She went on to say that support groups are not available 24/7 the way that an online community can be.
3. One of the speakers also observed that most people get started blogging because of someone they know in their "physical life." I thought that was interesting, because it was my spouse (a non-blogger) who introduced me to the blogosphere.
4. Another favourite keynote comment (again, if you know who said this, do let me know): "People with higher levels of income tend to be online. We need to be vigilant that our online communities are not recreating or reinforcing existing inequities."
5. As you can see, I found the content to be very rich and thought provoking this year, despite the size of the conference.
6. I do worry that some people spent so much time tweeting that they missed connections with real people or taking in the discussions occurring around them.
7. One of my favourite Twitter moments occurred when "phdinparenting" lamented her dislike for American beer. She posted about our interaction on BlogHer. It really tickled me that I could be of help. There were lots of those kinds of tweets, throughout the conference.
8. I wish the bookstore had been in a different location. One person suggested in a conference feedback thread that the bookstore would do better closer to registration. I suggested that book signings take place during cocktail parties, in the middle of the action (and of course it wouldn't hurt if free cocktails made people want to buy more books). The conference organizers have acknowledged that the placement of the bookstore in the far corner of the Expo hall was a mistake (too far out of the way. And who wants to buy a book when they are surrounded by mounds of free stuff?). While I do understand how experiments can fail (and how it must have seemed like a good idea during planning) I just wish that this particular year (when I schlepped a bunch of books in my suitcase) had not been the one where the bookstore flopped.
9. Elisa from BlogHer made an observation (in a tweet, of course), that she is trying to learn the distinction between things that are "wrong" and things that are just not her "cuppa tea." That's how I feel about the karaoke during the Friday night cocktail party. I hated it. However, others seemed to be having fun (perhaps I am just getting old), so I got myself a hot date and went to find a patio.
10. I have other thoughts but Sassymonkey and Blondie expressed them already. Go read their posts.
I said many times before going that BlogHer09 would be my last. I hadn't even unpacked my suitcase before I'd begun to fantasize about getting to BlogHer10 in NYC. Anyone want to drive down from Ottawa and share a hotel room with me?
Thursday, July 30, 2015
Time of Your Life
That was the song playing in the room while I had only 2 fucking drains pulled, I mean how apropos. I totally get the reasons why they only pulled 2 but it does not mean I have to be happy about it. It felt weird and gross and made Genevieve a little sick I think (now that is a friend!!). The one side did not hurt but the left cause it is so tender, WOOZA! I go to my breast care doctor tomorrow and hopefully she pulls the other 2. If NOT then I guess I am that woman on the beach! I think I am taking embarrassing my kids to another level. My friend's mom lives on the Cape and is a nurse so if worse comes to worse she can pull them because I am days away from them getting pulled and I really need to go. Am I nuts I ask you?? Well, couple of things here...YES I am, but she is a very experienced nurse and I trust her. Not so sure Tom is thrilled about it. She is a hard ass so she won't pull them by me begging. YET, I go way back with this woman and I think she may find joy in it, like a lot of JOY!! So I guess my point in all this is I will know tomorrow if I will be drain free.
Another turning point a fork stuck in the road
Time grabs you by the wrist directs you where to go
So make the best of this test and don't ask why
It's not a question but a lesson learned in time
It's something unpredictable but in the end
It's right I hope you've had the time of your life
So take the photographs and still frames in your mind
Hang it on a shelf in good health and good time
Tattoos and memories and dead skin on trial
For what it's worth it was worth all the while
Time grabs you by the wrist directs you where to go
So make the best of this test and don't ask why
It's not a question but a lesson learned in time
It's something unpredictable but in the end
It's right I hope you've had the time of your life
So take the photographs and still frames in your mind
Hang it on a shelf in good health and good time
Tattoos and memories and dead skin on trial
For what it's worth it was worth all the while
Not a practical option
Earlier this week, or maybe it was last week, I saw several articles on this new intraoperative radiation for breast cancer. This is when a radioactive probe is inserted into the breast during surgery and allows the patient to skip traditional radiation. Of course, they may still need chemotherapy and other treatments.
The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.
The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:
"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.
The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."
"...The initial price of the treatment is expensive, with each probe costing £500,000.
The procedure is performed during surgery.
Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."
That is when I fell off my chair. Am I understanding this correctly? Each probe costs £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.
If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.
The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.
The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:
"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.
The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."
"...The initial price of the treatment is expensive, with each probe costing £500,000.
The procedure is performed during surgery.
Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."
That is when I fell off my chair. Am I understanding this correctly? Each probe costs £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.
If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.
Vacation all I ever wanted....
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| my man!!! |
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| Yup that fanily |
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| Jello is our staple |
Sand in my toes, junk food in the bags, girl magazines ready, Patron in effect, J E L L O, metal detector ready for action and NO DRAINS!! This is going to be a great vacation add the 3 bottles of "Cheezy Does It" and it will be amazing. Seriously last year was plain awful (singing a little Annie to this I hope). Sure we laughed a lot but I was in so much pain coming a week off my mastectomy. I couldn't help the way I normally do actually I do tend to take over. I was simply exhausted by the time we left the beach that it the only thing I could do was sit. Don't get me wrong I barked orders just fine but I am a doer. I mean poor Megan had to carry 50 pound sand bags and lets face she weighs 100 pounds wet! Rosie can barely handle the Jell-O shots without me and I was too tired to really help. Ok I will admit it we are "that family" on the beach you know the one. With the cabana, music, 6 coolers, 12 chairs, soccer net, enough food to feed the beach, and loud very loud. Last year though we were all a little more toned down, no really we were. We were waiting on my pathology report, waiting good times. My famil was so nice to me, helping me, not letting me do squat. I am pretty sure that will change this year and I am so happy to be back to normal. Whatever normal is!
I can't wait for coconut ice cream at Sundae School, lobstah rolls from Arnold's, bone fire on the beach with our friends, bocce ball and getting my sun on! I know how exciting it is to go away, how you need it. But this year we REALLY need it. Not just from stupid dumb breast cancer but from stupid dumb heart attack too. I brought my dad to the Cape 15 years ago and we have been going ever since. Cape Cod is our happy place. Not just because its lovely but because some of our favorite people are there with us. And this year we are adding my nephew too, boy is in for it. These are the people that make me happy even when they are pissing me off, people that no matter what still treat me like a princess. Crap I hope I packed my tiara!
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| Hope, Live, Love |
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| Coconut Ice Cream for the nuts! |
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| My King |
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| My side kick |
Sunday Dinner
Through thick and thin it is your family that sustains you. With love, support and in my family's case nourishment. Thanks so much to my spectacular cousin, Heather who provided an Italian Sunday fest! She even went to Lyncourt Bakery for half moons and bread. She even made pizzelles. She even brought fried calamari. She even brought Greens (OK Bunny made them but she dropped them off and they were delish I almost ate the whole tray). She brought love. We have played paper dolls as little girls and waitress with each other for the aunties as they played cards, we have partied HARD, watched each other go off to college, get married even had babies at the same time, spent EVERY New Year's day together, and we have so much more to see and do as a family. Of course, we will do them as the old aunties with her "B" size saggy boobs and my REAL "B" perky ones, but mostly we will always be there for each other. Heather is a sweet woman and I am proud to call her family!
Is this too much to ask?
Right by my laptop lies a clipping from Sunday’s Times (7-27-08) Style section that really needs a credibility check. Its about jeans. Of the $200-plus variety.
You know, the kind you see on people with trust funds or a rich companion (interpretation: everyone but us). For women who saunter and consider the position of their hipbones as they do. People like me and you, who slouch over computers and have hipbones that are temporarily misplaced, long for one, just one really cool pair of jeans to keep the world running smoothly.
The photo from the clipping is, surprise, the very same product photo on the website of the designer. Go check that out. I would have thought the Times above that kind of crass commercialism, a concept long embedded in our DNA from that far-off and imaginary land called journalism. Sort of like living in Iowa, which happens to be where we grew up. This is probably rhetorical, but really, did the designer's stylist talk to the editor's girl? Are the $200 jeans on the wait list at Barney's the only ones fit to print? Even the supposedly everywoman's Oprah's pick (Cambio) retail for $190-something at Nordstroms.
Excuse me, for jeans? Let's open up the topic. Where, oh where, women of the world, are you finding your perfect" wow, do i feel good" jeans for under $100? Does this dog exist at all?
We used to find them at the GAP until the top of the jeans landed four inches below the belly button. We aged right out of that demographic. We bought, wore and worshipped the Levi's until we aged out of that demographic, too. The last pair I tried on had that upbiquitious, snakey stretch material that clings to sweaty skin like a leotard. That doesn't work in the hot, hot, hot air of Happy, Texas and it probably doesn't work for you, either.
Just so you know, the Sunday Style jeans are ..."higher waisted, well-washed.....the antithesis of the dark, skinny jeans that have saturated the denim market. " Heavy sigh. I wish I had a pair of them to try on right now.
You know, the kind you see on people with trust funds or a rich companion (interpretation: everyone but us). For women who saunter and consider the position of their hipbones as they do. People like me and you, who slouch over computers and have hipbones that are temporarily misplaced, long for one, just one really cool pair of jeans to keep the world running smoothly.
The photo from the clipping is, surprise, the very same product photo on the website of the designer. Go check that out. I would have thought the Times above that kind of crass commercialism, a concept long embedded in our DNA from that far-off and imaginary land called journalism. Sort of like living in Iowa, which happens to be where we grew up. This is probably rhetorical, but really, did the designer's stylist talk to the editor's girl? Are the $200 jeans on the wait list at Barney's the only ones fit to print? Even the supposedly everywoman's Oprah's pick (Cambio) retail for $190-something at Nordstroms.
Excuse me, for jeans? Let's open up the topic. Where, oh where, women of the world, are you finding your perfect" wow, do i feel good" jeans for under $100? Does this dog exist at all?
We used to find them at the GAP until the top of the jeans landed four inches below the belly button. We aged right out of that demographic. We bought, wore and worshipped the Levi's until we aged out of that demographic, too. The last pair I tried on had that upbiquitious, snakey stretch material that clings to sweaty skin like a leotard. That doesn't work in the hot, hot, hot air of Happy, Texas and it probably doesn't work for you, either.
Just so you know, the Sunday Style jeans are ..."higher waisted, well-washed.....the antithesis of the dark, skinny jeans that have saturated the denim market. " Heavy sigh. I wish I had a pair of them to try on right now.
Wednesday, July 29, 2015
Talking and working out
Yesterday afternoon at the gym, I got to talking to two other women (this is a common occurrence to stop and chat) on the topic of getting into shape/staying in shape while dealing with ailments. One woman is just done with chemotherapy again for chronic recurrent ovarian cancer and is new to the gym. The other woman has osteoarthritis among other problems and has belonged for five years or so.
The woman with ovarian is trying to get back in shape so she can go on a three week vacation to Turkey and Spain. She said it is quite difficult quite understandably to get some muscle tone again. I shared that I had been diagnosed with RA and fibromyalgia since joining the gym plus two cancer diagnoses as well. They both said they were impressed by what I could do in my workout. I said I thought I was in better shape at my diagnosis because I had already been going there regularly.
So the discussion quickly turned to the important of working out before a life changing diagnosis and after the diagnosis. All of us agreed going to the gym was important and helped us greatly. The third woman with osteoarthritis had had a lot of back pain before working out. Her improved muscle tone had helped her a lot and helped get rid of a lot of pain.
Then the conversation came to the benefits of swimming. All of us agreed we could not be paid enough to swim laps. One woman dog paddles, the other woman had her face pushed in the water by an instructor as a child and never learned to swim. I just hate swimming laps. So all of us agree the gym is a great way to get in shape but you won't catch us in the pool.
So while talking and working out, I learned a bit about others and how we can all agree on different things.
PS this is a lame post today. I know it.
The woman with ovarian is trying to get back in shape so she can go on a three week vacation to Turkey and Spain. She said it is quite difficult quite understandably to get some muscle tone again. I shared that I had been diagnosed with RA and fibromyalgia since joining the gym plus two cancer diagnoses as well. They both said they were impressed by what I could do in my workout. I said I thought I was in better shape at my diagnosis because I had already been going there regularly.
So the discussion quickly turned to the important of working out before a life changing diagnosis and after the diagnosis. All of us agreed going to the gym was important and helped us greatly. The third woman with osteoarthritis had had a lot of back pain before working out. Her improved muscle tone had helped her a lot and helped get rid of a lot of pain.
Then the conversation came to the benefits of swimming. All of us agreed we could not be paid enough to swim laps. One woman dog paddles, the other woman had her face pushed in the water by an instructor as a child and never learned to swim. I just hate swimming laps. So all of us agree the gym is a great way to get in shape but you won't catch us in the pool.
So while talking and working out, I learned a bit about others and how we can all agree on different things.
PS this is a lame post today. I know it.
Mid-Western BFF Birthday
Sometimes someone pops into your life and you have no idea what direction the relationship will have. Years ago I met Genevieve and I thought she is nice but I will be real friends. As time went on we got closer and closer sharing personal experiences and dark secrets (I think she once said she was a spy shhhhh). Funny how this loud mouth Italian became so close with this quiet Mid-Western girl. She was that friend that stood by me through this whole journey not leaving me side. Even when there was blood, scars and drains. She healed heal me through her photos in a way that I do not think she even understands. She made me feel like I was going to be ok through those pictures. Those photos then inspired and empowered and encouraged and helped so many other woman. I don’t think Genevieve will ever understand the magnitude of these pictures and I hope she will never have to. I am not only so happy to have her as my friend, I am so proud that she is my BFF. Thanks “G” for everything you have done. I am so happy your parents decided to have sex and make you. Happy birthday to my Mid-Western BFF.
Tuesday, July 28, 2015
Getting even or driving your doctor crazy
We all try to be a good patient. We try to eat better foods, less red meat more chicken and fish, get 8 hours of sleep, drink less, brush our teeth, floss, yadayadayada...
Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:
But I have 1:58 left to come up with my list of questions for her.
Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:
- Dr Google - we all know Dr Google is an idiot.
- Refusal to vaccinate - which has caused more problems later on
- Demanding antibiotics - they don't fix everything
- Claiming you are eating less and working out more but still not losing weight - obviously you aren't
- Asking for a quick fix - there is no magic pill (I know this because I ask regularly)
- I only eat low fat - low fat is good but some fat isn't bad
- I don't have time to come in - really? You have time to go to the gym, work, out to dinner, etc.
- I can keep smoking as long as I exercise - They don't get it
- I don't eat carbs - don't demonize a whole group of food. Whole grains are carbs but are good ones.
But I have 1:58 left to come up with my list of questions for her.
Monday, July 27, 2015
I swear they make this stuff up!
The latest breast cancer research says that sleeping in a dimly lit, as opposed to dark, room may interfere with how tamoxifen works. Really? They tried it on 12 rats. Yep. So now is news worthy.
So now you are supposed to have room darkening shades or convince your local community to turn off the street lights. I'm not buying it. Even if I was still on tamoxifen I would not believe a 12 rat study. This is why they always say more research is needed.
Or they just make this stuff up.
So now you are supposed to have room darkening shades or convince your local community to turn off the street lights. I'm not buying it. Even if I was still on tamoxifen I would not believe a 12 rat study. This is why they always say more research is needed.
Or they just make this stuff up.
The good the bad and the drains
Cancer free is fantastic but shit balls I am still hurting. It is crazy to be so elated with great news yet still have trouble doing push ups (hahahah kidding but I wonder how many thought no she didn't?). This entry is a hodge podge of thoughts, all this sitting on my ass (as it grows) watching Teen Mom has given me lots of opportunity to come up with ideas, reflections, complaints and a lot of gratitude.
I am slowly and methodically planning the Race for the Cure 2013, registration is October 1st so once that team is set up, watch out! I warned my girls at Komen that they may want one of the buildings set aside for Cure or Bust not the pavilion. I am looking for more responsibilities there as well. I want to get my story out so someone else can say early detection saved their life. A random person emailed me yesterday telling me my blog changed her outlook on breast cancer. It pushed her to get mammos set up for her and her 3 daughters even though there is no stupid dumb breast cancer in her family. That is what I am talking about!! I have been thinking about what can be done with the pictures Genevieve has taken (by the way here is her web link http://www.genphotos.com/ please check out her work). I want women to look at me as I journey through the lumps and think, "I can beat this". I really want to start a support group, my background is psychology and lets face it I am always psycho analyzing people in my head. I want this to combo exercise and healthy eating and am happy to say I have enough people to turn to for help.
I am so sick of drains! Never have they been fun, except when I threaten the kids that I will make them drain them. They are gross, uncomfortable and just annoying. When they come out I will feel much better and have less to bitch about. It is a win win situation.
Putting myself aside this has been hard on my family. Now remember full blooded Italian here so by family I mean "mi familia" everyone. My dad and G-Deb want to help and have done a great job of carting kids around but staying away too. I am sure the 1st task is great for them the 2nd difficult. My dad brought his sweet 90+ Monsignor friend over yesterday to bless me. Or perform an exorcism, you decide. My sister is just waiting for me to give her a job to do, I have come up with some but none have made her feel useful. Looks like its time to get the toilet scrubber out. My brother!!! What can I say, he is here every morning with bagels or donuts talking about when he changed my diapers. He can change my drains if he wants!! Tom has been Mr. Mom and has been so good at maintaining my level of anal retentiveness. He has conceded that he realizes just how much I do and I think it will stick. It has been a long week and we are both ready for Cape Cod. The boys just want normal. Julian told me "Momma I want the boys to go back to school", which in kids words is "WTF I want you all to myself". My cousins have been calling, emailing (like 50 a day from one person and you know who you are), texts and cards is crazy but makes me smile every time. But most of all getting inked! My cousin Rosie who has been there through all my ups and downs, similar to that of a roller coaster and her daughter who I have been there for through all her ups and downs similar to ME, both got inked!!! They may have been exempt from hair shaving.
My girlfriends, there are no words. The food and grocery shopping for us has been nourishing and delish. Let it be known there has not been a bad meal, we all know what a food snob I am and these bitches have delivered! The support, coffee stops, tears and love have been what is getting me through this. That and friends who come over and insist on taking the garbage out, cleaning the counters and vacuuming. It's friends that are my sisters that leave me speechless, boy are they happy about that! Each one in their support has come to be a different friend. Which makes me turn to them for different needs. The bitch friend, the let me see your boobs and take a picture after you have been mutilated, the silver lining friend, the WTF can happen now friend, the 2am and I need to talk friend... you all know your part and believe me I love you all so much. Even my BFF in California has been so helpful. There is nothing like staying up till 2am talking, laughing, crying with someone that has known you a lifetime. Who you have helped through hard times and in her voice hear how much she feels like she is not helping. You do not have to be in my living room to help. That being said let us not forget the pity prizes, just saying woman just saying. Even a rock is calming to me, by that I mean semi precious stones embedded in a piece is jewelry. Or bedazzled shoes!!!
Genevieve came over last night to capture some family moments. As I sat there it wasn't just about the pictures. I have 4 boys who I know will look back on this and say "mom rocked" but my girlfriends girls are so important to me. When Nikki stopped over I saw in her girls' eyes relief. They knew I was alright but to see it was happy for them. It didn't stop them from trying on my shoes and eating my grub! I love them like they were my girls. I watched as the boys and their very good girlfriends sat and watched TV, they talked about being scared and crying over things, they sat together on the couch without being concerned about boy/girl crap...they were there for each other. I want my "daughters" to be proud of there 2nd Mommy and remember this as they grow into beautiful women to check their boobies!!!
Guess I wasn't so speechless after all.....
G
I am slowly and methodically planning the Race for the Cure 2013, registration is October 1st so once that team is set up, watch out! I warned my girls at Komen that they may want one of the buildings set aside for Cure or Bust not the pavilion. I am looking for more responsibilities there as well. I want to get my story out so someone else can say early detection saved their life. A random person emailed me yesterday telling me my blog changed her outlook on breast cancer. It pushed her to get mammos set up for her and her 3 daughters even though there is no stupid dumb breast cancer in her family. That is what I am talking about!! I have been thinking about what can be done with the pictures Genevieve has taken (by the way here is her web link http://www.genphotos.com/ please check out her work). I want women to look at me as I journey through the lumps and think, "I can beat this". I really want to start a support group, my background is psychology and lets face it I am always psycho analyzing people in my head. I want this to combo exercise and healthy eating and am happy to say I have enough people to turn to for help.
I am so sick of drains! Never have they been fun, except when I threaten the kids that I will make them drain them. They are gross, uncomfortable and just annoying. When they come out I will feel much better and have less to bitch about. It is a win win situation.
Putting myself aside this has been hard on my family. Now remember full blooded Italian here so by family I mean "mi familia" everyone. My dad and G-Deb want to help and have done a great job of carting kids around but staying away too. I am sure the 1st task is great for them the 2nd difficult. My dad brought his sweet 90+ Monsignor friend over yesterday to bless me. Or perform an exorcism, you decide. My sister is just waiting for me to give her a job to do, I have come up with some but none have made her feel useful. Looks like its time to get the toilet scrubber out. My brother!!! What can I say, he is here every morning with bagels or donuts talking about when he changed my diapers. He can change my drains if he wants!! Tom has been Mr. Mom and has been so good at maintaining my level of anal retentiveness. He has conceded that he realizes just how much I do and I think it will stick. It has been a long week and we are both ready for Cape Cod. The boys just want normal. Julian told me "Momma I want the boys to go back to school", which in kids words is "WTF I want you all to myself". My cousins have been calling, emailing (like 50 a day from one person and you know who you are), texts and cards is crazy but makes me smile every time. But most of all getting inked! My cousin Rosie who has been there through all my ups and downs, similar to that of a roller coaster and her daughter who I have been there for through all her ups and downs similar to ME, both got inked!!! They may have been exempt from hair shaving.
My girlfriends, there are no words. The food and grocery shopping for us has been nourishing and delish. Let it be known there has not been a bad meal, we all know what a food snob I am and these bitches have delivered! The support, coffee stops, tears and love have been what is getting me through this. That and friends who come over and insist on taking the garbage out, cleaning the counters and vacuuming. It's friends that are my sisters that leave me speechless, boy are they happy about that! Each one in their support has come to be a different friend. Which makes me turn to them for different needs. The bitch friend, the let me see your boobs and take a picture after you have been mutilated, the silver lining friend, the WTF can happen now friend, the 2am and I need to talk friend... you all know your part and believe me I love you all so much. Even my BFF in California has been so helpful. There is nothing like staying up till 2am talking, laughing, crying with someone that has known you a lifetime. Who you have helped through hard times and in her voice hear how much she feels like she is not helping. You do not have to be in my living room to help. That being said let us not forget the pity prizes, just saying woman just saying. Even a rock is calming to me, by that I mean semi precious stones embedded in a piece is jewelry. Or bedazzled shoes!!!
Genevieve came over last night to capture some family moments. As I sat there it wasn't just about the pictures. I have 4 boys who I know will look back on this and say "mom rocked" but my girlfriends girls are so important to me. When Nikki stopped over I saw in her girls' eyes relief. They knew I was alright but to see it was happy for them. It didn't stop them from trying on my shoes and eating my grub! I love them like they were my girls. I watched as the boys and their very good girlfriends sat and watched TV, they talked about being scared and crying over things, they sat together on the couch without being concerned about boy/girl crap...they were there for each other. I want my "daughters" to be proud of there 2nd Mommy and remember this as they grow into beautiful women to check their boobies!!!
Guess I wasn't so speechless after all.....
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| HOME |
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| really says it all, check the kids in the window |
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| I love this pic, the beauty of friendship and the ugly of breast cancer together and fighting and winning! |
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| Tired but not even close to defeated |
G
Sunday, July 26, 2015
Did chemotherapy change your body?
A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?
I am talking about food and medications to be specific.
Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.
More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:
And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.
If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.
I ampetrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records.
But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told us before chemo that we could expect these changes.
I am talking about food and medications to be specific.
Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.
More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:
- prednisone - also used to treat RA flare ups as well as allergic reactions
- plaquenil - an old school RA drug
- voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
- adhesives - as used on pain patches
And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.
If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.
I am
But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told us before chemo that we could expect these changes.
having a wonderful time. wish you were here.
I am having my best BlogHer ever.
The biggest difference is that I am more comfortable in my own skin, more at ease with who I am and more willing to take risks when it comes to approaching people.
I also know myself well and am making the choices that are the right ones for me. This has meant that I am not pressuring myself to "network" not doing the parties and welcoming opportunities for one on one time with interesting people. This has led to the creation of some lovely memories and the deepening of some friendships.
Yesterday, I attended sessions on "The Transformational Power of Blogging," "Blogs and Body Image: What are we teaching our kids?" and "Patient Bloggers: You are not your disease - you just blog about it every day." Every one was excellent.
I toyed with the idea of skipping the "Community Keynote" but I'm so glad I didn't. A series of bloggers read selected posts from their blogs, each more funny or sad or powerful than the next. And some really beautiful pieces of writing.
Last night's cocktail party was a little grim (karaoke! ouch!) or maybe I am just getting old ("the noise! I couldn't have a conversation!") The free booze just wasn't enough to make me stay. Luckily, I invited Elana to have dinner with me - and she said yes. A pint and a bite and some lovely conversation later, I felt restored.
Today, I have visited the vendors, talked to people and, at lunch, I did my book signing. They had us tucked away in a far corner of the Expo hall, so it was a little slow. I was signing with Ilene Chaiken, creator of the L-Word and we still didn't draw more than a handful of people. I've sold and signed a few books, though and have done as well as anyone else here.
Next up is a session on "Online Safety for Your Kids Who Are Online Themselves." I just hope it's not all scaremongering.
I think I'm going to skip the evening cocktail party and go have some deep-dish pizza with Suzanne, her parents and some other bloggers.
This time, I wasn't to oshy to ask for a celebrity photo (that's Ilene Chaiken on the left and BlogHer co-founder - and blurber of my book - Lisa Stone in the centre).Put your cutting shears AWAY!!!
Did someone say.......CURED???? Oh yeah my oncologist said it, hell yeah baby. I am so happy, relieved, excited, and other emotions I can not explain. I will need checks but no chemo baby. You can all rest assure you will not have to shave your hair. Still maintain a good cut and highlight regularly, but no baldness for us. Thanks to everyone who held my hand through this I know I squeeze hard and the support was incredible. I feel sort of like it was "fake cancer" but there really is nothing fake about what I am going through, well with exception to my boobs now. There is a long road ahead but one that is not filled with more cancer, chemo and radition I will never stop sayng this...EARLY DETECTION SAVED MY LIFE! Had I been so involved in Komen and what it teaches I may have a different outcome. I will be the poster girl for this cause forever, so be ready to celebrate my life, a life as a stupid breast cancer survivor. WHOOT WHOOT!!!! I can't fist pump it still hurts:)
Saturday, July 25, 2015
Medical guidelines discovered
Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.
And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here. And a list for all available patient guidelines by cancer type.
I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.
Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.
Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.
So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.
And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here. And a list for all available patient guidelines by cancer type.
I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.
Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.
Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.
So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.
Proud to call myself a survivor
First, let me start by saying I meet with the oncologist TOMORROW. Until then I do not have any reports back and will hopefully have all that info after the appointment. So stop friggin asking me! A friend just dropped off beautiful flowers (the card read "get better big mouth") and a ton of candy. She asked about chemo and I said I was unsure but hopeful I was in the clear. She told me how great I will look in short hair (perfect thing to say!), to which I said "if I have to go bald all my friends are too". To which she replied "we aren't that good of friends", I needed that truth! I am still cracking up here.
I got the pictures from Genevieve of yesterday. Her artistic eye is unreal. As much as I look like the Bride of Frankenstein she made them beautiful. Wait she made me look beautiful when I feel anything but. I want other breast cancer woman to see me and think "damn breast cancer looks good on her". I want them to know they are not alone, that it hurts like a bitch is scary as hell and looks like a shit (at first, I was promised this is not the outcome and I affirmed that if it was I was suing) but they have people to turn to and lean on that have gone through this. I will add these picture to the tab above and do not click it if you think it's too much. To me it is what it is and I'm proud that I'm fighting hard, OK and a little whinny at times but shit it's stupid dumb breast cancer! I will stand with my head up, shoulders back and high heels on as you look at my road to recovery. I am speechless at these pictures and I think they speak volumes, so brace yourself, there will be no comments. I am keeping my big mouth closed.....
I got the pictures from Genevieve of yesterday. Her artistic eye is unreal. As much as I look like the Bride of Frankenstein she made them beautiful. Wait she made me look beautiful when I feel anything but. I want other breast cancer woman to see me and think "damn breast cancer looks good on her". I want them to know they are not alone, that it hurts like a bitch is scary as hell and looks like a shit (at first, I was promised this is not the outcome and I affirmed that if it was I was suing) but they have people to turn to and lean on that have gone through this. I will add these picture to the tab above and do not click it if you think it's too much. To me it is what it is and I'm proud that I'm fighting hard, OK and a little whinny at times but shit it's stupid dumb breast cancer! I will stand with my head up, shoulders back and high heels on as you look at my road to recovery. I am speechless at these pictures and I think they speak volumes, so brace yourself, there will be no comments. I am keeping my big mouth closed.....
Friday, July 24, 2015
The word for the day is "Ow"
On a scale of 1-10, how is my pain today? Probably about a 4, all over my body. With spots of 6-7 in certain areas.
I don't know why but for the past few days my body has be very achy and sore. I have been living on Tramadol again. I hate this. I prefer not to take pills if I don't have to. I mean I do take a lot of pills but prefer not to take any more than needed. And since everything hurts, I need tramadol to survive without rampant crankiness.
And to start my day I have a dentist appointment. This is where they will go in and pick at my teeth with sharp metal objects. Its a new dentist office but not a new dentist. The dentist moved to a new office so we followed her. Apparently the hygienists are very 'good' at cleaning and whip the patients into shape. I can't wait.
This is where I also talk to the dentist about not getting a crown on my root canal until January when we will have dental insurance. Its been a month and it hasn't been a problem so I want to wait. I'm cheap. Actually I just don't want to pay for a crown right now if I can wait and get one through insurance. I already paid for the damn root canal.
To recover from the dentist, I will go to the gym. To recover from the gym, I will go to the grocery store. But not the grocery store which is on strike right now.
First things first, I will go take a tramadol, and then take a shower, and brush my teeth after breakfast.
I don't know why but for the past few days my body has be very achy and sore. I have been living on Tramadol again. I hate this. I prefer not to take pills if I don't have to. I mean I do take a lot of pills but prefer not to take any more than needed. And since everything hurts, I need tramadol to survive without rampant crankiness.
And to start my day I have a dentist appointment. This is where they will go in and pick at my teeth with sharp metal objects. Its a new dentist office but not a new dentist. The dentist moved to a new office so we followed her. Apparently the hygienists are very 'good' at cleaning and whip the patients into shape. I can't wait.
This is where I also talk to the dentist about not getting a crown on my root canal until January when we will have dental insurance. Its been a month and it hasn't been a problem so I want to wait. I'm cheap. Actually I just don't want to pay for a crown right now if I can wait and get one through insurance. I already paid for the damn root canal.
To recover from the dentist, I will go to the gym. To recover from the gym, I will go to the grocery store. But not the grocery store which is on strike right now.
First things first, I will go take a tramadol, and then take a shower, and brush my teeth after breakfast.
do me a favour: honour my friend by having some fun
My friend Rebecca died this week. She was all of 37 years old (if I've done the math right) and she had metastatic breast cancer. She was also one of the funniest people in my online community. She was also generous, straigtforward and honest. My heart goes out to her friends and family - the people she loved, wrote about and who knew her best.
Rebecca left strict instructions that we were to shed no tears after her passing (I'm afraid I've let her down on that front but I've been doing my best) and that, instead of a funeral she wanted a celebration of her life. I'd love to join the party and to hear the stories that those closest to her would be bound to share. Because Rebecca took her fun seriously.
I won't be able to attend the celebration (Rebecca lived in Cape Cod) but I would like to do something. And I need your help.
1. In the next week or so, please go out and do something fun. Do anything at all, as long as it makes you happy. If you need inspiration, Rebecca loved dogs (especially her pit bull, Diezel), cooking, eating out (her restaurant reviews were among my favourite blog posts), her scooter, her little car, road trips, NASCAR, kick boxing, books, funny movies and music. If none of these things appeal to you, please go out and do your own thing. If you like, bring someone with you to join in the fun.
2. Let me know. You can leave me a comment on this blog, send me an email (laurie dot kingston at gmail dot com) or message me on Twitter (I'm @lauriek). Just a few words to let me know what fun thing you did in Rebecca's memory. I'll compile a list and make sure that it gets to her family.
living large
Chemo typically turns me into a horned, fanged, clawed she-devil for at least one day following treatment. Today is that day.
My head knows the mood will pass but boy am I pissy.
But I'm trying to re-commit to having something vaguely resembling content on this blog, so I thought I'd share a couple of shots taken in a parking lot outside a Sonny's restaurant in South Florida (we'd had lunch that day at my first ever Waffle House. We were on a greasy streak).
We had just come back from a day at Corkscrew Swamp and filled up on ribs and other good fried things and I think I was a little giddy.
Anyway, this car just called to me and I made the boys take photos.
My head knows the mood will pass but boy am I pissy.
But I'm trying to re-commit to having something vaguely resembling content on this blog, so I thought I'd share a couple of shots taken in a parking lot outside a Sonny's restaurant in South Florida (we'd had lunch that day at my first ever Waffle House. We were on a greasy streak).
We had just come back from a day at Corkscrew Swamp and filled up on ribs and other good fried things and I think I was a little giddy.
Anyway, this car just called to me and I made the boys take photos.
landed
What I mean is, that I am now in Chicago, comfortably ensconced in my hotel room and ready to attend BlogHer 09.
I didn't get sick (although both my kids did) or my symptoms were really mild (or I have yet to be felled but I won't consider that option). Thanks to everyone who wished me well. I think it helped.
I am typing this (badly) on a lovely little borrowed Netbook, since my computer died on Tuesday afternoon. After calling around for the best prognosis and cheapest care, it seems like it's fixable. I'm glad but I could learn to love this little loaner, even as I adjust to a new keyboard.
Last year, you may recall that my computer took sick right before BlogHer as well. I chose to be computer-less (and while I certainly didn't mind not schlepping the thing back and forth from Oakland to San Francisco and back every day, I did miss being wired. Twitter played such a big role at last year's conference (I'm @lauriek. Follow me, if you like!) and I missed being able to read everyone's comments at day's end and add my own. Also, the comprehensive agenda was online only and I left before it was available, so that was a bit of a hassle. This year's laptop demise may end up feeling serendipitous.
I'm not going to hide behind the computer, though. I made myself some handwritten notes this morning (I try to spend a few minutes writing free-hand most days) which can be summed up this way: relax, don't let my introversion get the best of me and have fun!
I forgot my USB cable (so no photos to download until I get home) and a little gift to exchange with someone. I did remember to bring a friend's husband's forgotten wedding ring and another friend's head on a stick.
The head (well, photograph of a head) belongs to Nora who can't be here (something about having given birth to twins). Nora and I met at last year's BlogHer. I liked her very much. And I must say that she has thus far been an excellent travelling companion. There are a few of us here bearing Nora's head and tomorrow, we are going to try and pose for a group photo.
I have to head over to the conference hotel, shortly (I am staying a few blocks away) and deliver my books the bookstore. I'm doing a signing on Saturday at lunch (12:15 to 12:40). I 'm sharing the spot with Ilene Chaiken (creator of the L-Word), so I will either benefit from her spillover or be left entirely alone. If you don't yet have my book and you want to buy it at BlogHer, I promise to sign it and write something really nice.
Thursday, July 23, 2015
Does blogging=journaling?
I just read this article about the benefits of journaling - taking pen to paper. The claims are it benefits your immune system, blood pressure and lung and liver function as well as allowing the right side of your brain to be creative.
It also gives tip for getting started. But I've clearly already started. As long as blogging equals journaling. While I am not putting pen to paper, I am putting hands to keyboard and my right brain is working (I hope).
The tips given are:
I would add to that - if you have a brain like a sieve (like me), you can go back and read what you wrote so you can remember what you actually did that day. And ignore whatever your high school English teachers told you. Mine told me I couldn't form a cohesive paragraph and would never be a writer. But she was old and cranky too.
It also gives tip for getting started. But I've clearly already started. As long as blogging equals journaling. While I am not putting pen to paper, I am putting hands to keyboard and my right brain is working (I hope).
The tips given are:
- write consistently
- consider starting each day writing
- never self edit
- write about the good, the bad and the ugly.
I would add to that - if you have a brain like a sieve (like me), you can go back and read what you wrote so you can remember what you actually did that day. And ignore whatever your high school English teachers told you. Mine told me I couldn't form a cohesive paragraph and would never be a writer. But she was old and cranky too.
National Tractor Trailer school
I have to tell you that yesterday was the worst day. I woke up feeling pretty good. Sat with the boys as they got ready for the Fay-Man race (Ben won and Sam came in 7th, they are fast from their mother chasing them with a wooden spoon). I chilled while they were gone and watched some good old fashioned "Toddlers in Tiara". They came home so excited about the race and got ready to go to Uncle Tom and Aunt Rosie's. MC stopped by to check my BP, it was good. She just missed her boobless wonder. I was going to take a tub while they were here but I was so lightheaded. They left and the pain slowly set in. Now, I know people say they have a high threshold for pain and they are full of shit. I honestly do, but this pain was unreal. I think the way they get your boobs off is by running a semi over your chest to flatten it. The muscle pain is horrible. I feel like I did 200 push ups, 300 dips and 400 pull ups all at once! I was warned about the pain and how strange you chest feels and they did not lie. My "boobs" feel so funky, I mean what I can feel through the wrapping. I am like that uncle that could take his teeth out and make some crazy noise. My chest is making this swish swish sound and I enjoy showing people as they scream so grossed out. The meds barely touched the pain. I had a mini break down, yeah I am entitled to! I did some really great crying and whining, thank god I have good family and friends that put up with me and gave me tons of words of encouragement. After our Chinese dinner, yes it was Sunday no pasta we are living on the edge here, I sat back in my chair and put my eye patch on. The pain was still intense and I really wanted to shield the boys from it. Did I say Anthony fainted when I came home and he saw the drains?? Passed out cold turkey. I rested for the night while the boys watched Jeff Corwin and Tom did the laundry (pretty good too I may add). I admit I did play the occasional Words With Friends but other than that NOTHING. I do feel better today and I knew I would but getting through yesterday was difficult to say the least.
I am going to the plastic surgeons this morning. I have 4 drains and hopefully he is pulling 2. These suck, they do not hurt but its some nasty ass shit! Amazes me that us mastectomy people go home with these drains and have to deal with them. Like we are not having enough issues we have to empty these bulbs and record it. There is no looking good with 4 bulbs hanging from your dress with red crap in it! MC and Genevieve are taking me and I will say I am nervous. I will See my chest for the first time and wonder how I will take it? I do not care about the boobs being gone because they tried to kill me but the scars and marks will be hard to look at. I am glad I have MC to make some crude jokes and Genevieve to document the chest being unwrapped (plus she is proof how rude that little bitch can be). My day trumps all your boring ass days so do not give me "ugh I have to get the kids from camp, go to Wegman;s, stop at the bank..." shit..................... drains did not come out. Doctor says it looks great, really cause I thought it looked a little like Frankenstein. He was pleased with how my chest was healing and that did make me feel better. MC did her thing and asked questions and Genevieve did her thing and snapped away pictures. I feel better having the gauze off but the ace bandage feels good wrapped on me so I am leaving it. He was a little disappointed I wasn't wearing my heels! The visit wiped me out, which pissed me off. It's Monday and I usually do a full body work out with cardio, yet a trip to the doctor wiped me to. Stupid dumb breast cancer!!!
I am going to the plastic surgeons this morning. I have 4 drains and hopefully he is pulling 2. These suck, they do not hurt but its some nasty ass shit! Amazes me that us mastectomy people go home with these drains and have to deal with them. Like we are not having enough issues we have to empty these bulbs and record it. There is no looking good with 4 bulbs hanging from your dress with red crap in it! MC and Genevieve are taking me and I will say I am nervous. I will See my chest for the first time and wonder how I will take it? I do not care about the boobs being gone because they tried to kill me but the scars and marks will be hard to look at. I am glad I have MC to make some crude jokes and Genevieve to document the chest being unwrapped (plus she is proof how rude that little bitch can be). My day trumps all your boring ass days so do not give me "ugh I have to get the kids from camp, go to Wegman;s, stop at the bank..." shit..................... drains did not come out. Doctor says it looks great, really cause I thought it looked a little like Frankenstein. He was pleased with how my chest was healing and that did make me feel better. MC did her thing and asked questions and Genevieve did her thing and snapped away pictures. I feel better having the gauze off but the ace bandage feels good wrapped on me so I am leaving it. He was a little disappointed I wasn't wearing my heels! The visit wiped me out, which pissed me off. It's Monday and I usually do a full body work out with cardio, yet a trip to the doctor wiped me to. Stupid dumb breast cancer!!!
watch me wave my hands around a lot
As promised, here is a direct link to the Connected segment on cancer blogging:
http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307
http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307
Wednesday, July 22, 2015
Blooming
This rose bush was a gift to team captains for Race for the Cure. It bloomed yesterday and made me smile. I believe in symbolism and this one was so clear. This is a sign that life grows, changes and is beautiful. It tells me to stop for a moment and smell the roses. It also tells me the plant is very hardy cause I can kill a silk flower! No green thumb here, just PINK.
Medical errors - and what if they didn't tell us?
Massachusetts General Hospital archives
Dr. Ernest Amory Codman.We all are aware that, unfortunately, medical errors can and do occur. A recent example is of this New Zealand woman who was never told of her Her2 positive diagnosis for two years and didn't receive the correct treatment until it was too late.
But what if doctors never told us about treatment outcomes and what their error rates were? That would be pretty damn scary. No one likes to admit they made a mistake but as 'to err is human', it does happen.
But that's the way things used to be:
"Dr. Ernest Amory Codman was in his mid-40s when his golden career as a sought-after Harvard surgeon began to unravel. He had quit in exasperation from Massachusetts General Hospital, and when he took his dispute with hospital leaders public, colleagues turned against him. Many stopped sending him patients.
It was the early 1900s, and Codman was impatiently pushing hospitals and doctors to adopt a practice many considered heretical at the time: Record the “end results’’ for every patient — including harm caused by physicians’ errors — and make them public."
But now his work is being recognized:
"A century later, many of Codman’s ideas are the bedrock of modern medicine. And a group of doctors, including a former Mass. General surgery chief, plans to make sure he gets the wider appreciation he deserves this week."
His work has led to many changes in medical practice, even if he wasn't appreciated during his life time. You can read here the whole story here but think of what medical practice would be like with out people like him pushing for change.
watch me on tee vee!
Or catch it online.
I'm being featured in a story on cancer blogging on CBC News Network (formerly Newsworld). Tune in this evening, between 8:00 - 9:00 p.m. ET
You can also watch online at cbc.ca/connect (I'll post a direct link to the video once the show has aired).
I promise to blog more about the whole experience (I was interviewed at home with my family and in the chemo room) but I wanted to give all a chance to check it out..
If you watch the show, let me know what you think.
Patient Empowerment: Two
There are some experiences you can not understand until you're there. Being diagnosed with cancer is one of them.
Even with a history of cancer in my family, suddenly becoming the one with the diagnosis was surreal. It was the first visceral understanding I'd ever experienced of my own mortality. And the younger you are at diagnosis, the greater the shock and sense of displacement. In a moment I'd navigated a passage from working writer/wife/friend/sister to "DidYouKnowThatJodyHasCancer, OhMYGOD." From then until now has been and continues to be an incredible journey.
Many of you know that I'm participating on a panel discussion Friday on "Patient Empowerment" in Chicago (Cancer Treatment Centers of America) with four awesome cancer advocates -- Joe Bacal, Lani Horn, Mel Majoros, and Matthew Zachary. We'll be bouncing around "best practices" from cancer land, so to speak, or "what we wish we knew from the get go." On Twitter and Facebook I've asked you to send me some of those tips. Here's what you've been telling me to pass on -- and no, I DID NOT make any of these up. Each of these -- as frightening as some are -- have been submitted by you within the past week:
1) I'm a person, doctor, not a medical record number. Please read me the right report. I don't want to know the results of anyone else's scan but mine.
2) Tap the power of the internet. The internet can be essential for connecting immediately with someone in exactly the same situation. Try Twitter or Facebook. You can post a question on Twitter and receive many cordial, helpful replies in a very short time.
3) Caregivers need support. So much of the focus is on the patient yet the caregiver often needs as much if not more support. Partners, especially those with young children, have the double whammy of an ill spouse, a job AND children all at once. It's essential that our caregivers receive assistance, too, and with that said, one of my personal recommendations is:
4) Organize your treatment centered life. One of my best friends stepped right up on her own and organized people, meals, rides, and communication. I am forever grateful to her. You may need to ask someone to do so and if that's difficult for you to ask for help, CALL ME. It can make so much of a difference for you:) There are also awesome organizations you can call who will send you tools to do so:
About Cancer Itself
1) Get the facts -- not the fears -- on cancer. Our government's medical information is excellent and their web sites -- easy to navigate. You can obtain good basic information from:
3) "It's your life," a friend said the other night, "and at some point you stop being a patient and get back to living. You've heard the old joke about the line you DON't want on your tombstone? 'I told you I wasn't feeling well.' Get hold of your health."
I know I've just barely scratched the surface. If there's something I've missed we don't go live until 2:30 Friday afternoon CT so please write here, email me at jschoger@gmail.com or send me a DM on Twitter to @jodyms!
Be excellent and thanks as always, friends.
Even with a history of cancer in my family, suddenly becoming the one with the diagnosis was surreal. It was the first visceral understanding I'd ever experienced of my own mortality. And the younger you are at diagnosis, the greater the shock and sense of displacement. In a moment I'd navigated a passage from working writer/wife/friend/sister to "DidYouKnowThatJodyHasCancer, OhMYGOD." From then until now has been and continues to be an incredible journey.
Many of you know that I'm participating on a panel discussion Friday on "Patient Empowerment" in Chicago (Cancer Treatment Centers of America) with four awesome cancer advocates -- Joe Bacal, Lani Horn, Mel Majoros, and Matthew Zachary. We'll be bouncing around "best practices" from cancer land, so to speak, or "what we wish we knew from the get go." On Twitter and Facebook I've asked you to send me some of those tips. Here's what you've been telling me to pass on -- and no, I DID NOT make any of these up. Each of these -- as frightening as some are -- have been submitted by you within the past week:
1) I'm a person, doctor, not a medical record number. Please read me the right report. I don't want to know the results of anyone else's scan but mine.
2) Tap the power of the internet. The internet can be essential for connecting immediately with someone in exactly the same situation. Try Twitter or Facebook. You can post a question on Twitter and receive many cordial, helpful replies in a very short time.
3) Caregivers need support. So much of the focus is on the patient yet the caregiver often needs as much if not more support. Partners, especially those with young children, have the double whammy of an ill spouse, a job AND children all at once. It's essential that our caregivers receive assistance, too, and with that said, one of my personal recommendations is:
4) Organize your treatment centered life. One of my best friends stepped right up on her own and organized people, meals, rides, and communication. I am forever grateful to her. You may need to ask someone to do so and if that's difficult for you to ask for help, CALL ME. It can make so much of a difference for you:) There are also awesome organizations you can call who will send you tools to do so:
- The Lance Armstrong Foundation -- Survivor Care
- The National Coalition for Cancer Survivorship: Cancer Survival Toolbox
1) Get the facts -- not the fears -- on cancer. Our government's medical information is excellent and their web sites -- easy to navigate. You can obtain good basic information from:
- The National Cancer Institute: http://www.cancer.gov/. You can stay on this site or follow links to the nation's NCI-designated cancer centers. All of these hospitals, in turn, provide a wealth of information, and also link to non-profit organizations advocating for specific cancers.
- U.S. News & World Report -- Hospital Rankings: Cancer: http://health.usnews.com/best-hospitals/rankings/cancer
- The American Cancer Society is another great starting point. I especially like the section on treatment decision tools: http://bit.ly/bwAPzX
3) "It's your life," a friend said the other night, "and at some point you stop being a patient and get back to living. You've heard the old joke about the line you DON't want on your tombstone? 'I told you I wasn't feeling well.' Get hold of your health."
I know I've just barely scratched the surface. If there's something I've missed we don't go live until 2:30 Friday afternoon CT so please write here, email me at jschoger@gmail.com or send me a DM on Twitter to @jodyms!
Be excellent and thanks as always, friends.
Tuesday, July 21, 2015
Stick of dynamite
My evening nurse was amazing really amazing! She was a wise Cracking woman who would not take my shit, which made my family so happy. She called me a stick of dynamite, small but explosive! Hmmmmm, guess she got my number. Last night was good, well the drugs were what made it that way. So many people called and texted, thanks so much! Sorry I couldn't answer all the calls I was drugged and out of it. I did sleep on and off. They tell you to sleep then come in every hour to check vitals, fluids, dump drains, how the hell can I sleep if you keep waking me up? My blood pressure did drop very low and they freaked a little but we got it under control. I am waiting to see the doc so I can get the hell out of dodge. I feel so powerful from all this support, please know how much it means to me. If I forget a thank you I am sorry, I blame the drugs just like in high school. My dad and G-Deb, my sister and brother were very good about keeping their tears under control and only giving love. Damn Italians cry over everything. I know they want to help so there will be bathrooms and floors to clean this week. Tom was great and made me feel strong and proud of myself! I love him for that, among other things. So I thank them all especially! Genevieve taking all the pictures made me have to smile, cause shit I wanna look good in them. Her support through pictures has been so therapeutic who needs a shrink when you got a photographer!! Then there is MC.....every step she has been there. Felt the lump, I knew she always wanted me. She went to the doctors with us to ask the questions while Tom and I tried to take it in, then she explained them to us in terms we got. She sat through the lumpectomy, and pounded the doctor with questions after. She has kicked my ass in work outs really making me strengthen my chest muscles. Came to my radioactive dye day even though she was freaked I would react on her. MC was up here at the crack of my ass helping not just me but everyone else in the family. And believe me my dad, sister, and brother are a lot to handle. She fielded my phone and the 100,000 questions people had! After surgery she pounded the doctor again with questions, she asks a lot if questions! She walked me down the hall for the first time and just laughed with me. I can never thank her enough but I wanted her recognized for what she has done for me, Tom, and my family. Because let's face it I am a LOT To handle!
Specialty Drug Prices are Killing the Patients
I know I have blogged about this before but it just irks me of the inequalities that I see in this system. I do not have a grudge against big pharma. I really do not. I just wish there was more change in the system where drug companies seem to be tightening the noose on patients who are trying to survive.
Is your life worth $100,000 annually? Can you afford $1000 monthly in drug copays? If you ask the big pharma companies, it is. The majority of the new drugs approved last year by the FDA are specialty drugs, 19 of 28 (which is an appallingly low number of approvals to me but that's another story for another day). These come with the hefty, specialty price tags.
"Fewer than 4 percent of patients use specialty drugs, but they account for 25 percent of total drug spending in the United States; and the growth of specialty drugs is a key factor driving up health care spending, according to PricewaterhouseCoopers."
Many insurance plans provide affordable co-pays for the drugs. But more and more, as a cost saving effort, are switching to tiered plans. I have one where generics are very cheap but brand names drugs can be very expensive. They can be 35% of the retail... I can avoid much of that by mail order but still when one month of one drug has a co-pay of $105, it begins to add up. More and more insurers are moving to this type of coverage as they cannot afford to keep up with the new drug prices. I do not blame them with the costs of these drugs.
We have an industry which is full of employee perks and generous salaries and we have insurance companies who are trying to balance their budgets and patients who are being killed by their drug payments. Where does that problem lie?
This system needs to change. Its not all the pharma companies fault, there is some blame to be borne by the insurance companies as well. Moving costs to the patients is not the best option either.
not this time
We got back yesterday evening from my spouse's family cottage. It's a place I love and where I am always happy, even when the weather does not cooperate.
So despite the fact that I couldn't bring myself to go swimming and I didn't sit around on the dock in my bathing suit, I still found time to read, enjoy the company of family and make art with D. ("Who would have thought that painting could be so much fun?" he said. "Using your imagination!"), knit, go for walks, eat and drink too much and just relax. My spouse taught S. how to play Backgammon and D. taught me how to tolerate playing PayDay.
It was all quite lovely, even if we we did miss the sun.
On the very last night, though, D. woke with a fever and could not get back to sleep. He threw up twice (and copiously) on our long drive home.
I kept him home today and let him watch DVDs in his pajamas. By this evening, he was asking to go to the park.
Through it all, I comforted, fussed and nursed. And tried not to heed the guilty voice in my head: "The kid has lousy timing! I can't get sick. I leave on Thursday for BlogHer!"
This evening my head hurts and I am achy. I feel just as I did before the fever set in, on the day before my ill-fated Toronto book launch.*
I cannot get sick. I will not get sick. I am going to bed and tomorrow, I will wake up feeling well.
Cross your fingers for me, OK?
*temporarily ill-fated. Re-scheduled for October.
finding hope beyond the pink ribbons
My friend Sean Moore, Orit's husband, posted the following note on FB. I reprint it here with his permission:
Let's do something great to honour a wonderful woman. Let's help fund research that will effect real change. I donated. Will you?
An enormous number of people have asked about donations in Orit’s name over the past 2 weeks. As many of you know, Orit was very academically minded and spent considerable time reading the medical literature and evaluating charities. We found that most cancer research charities had very high administration fees and poor impact factors. We came across some specific research, which has very good promise in helping find a cure. The Ottawa Hospital Foundation has set up a fund, which will be used 100% to go directly to this work. The discovery is very novel and was published in the world’s most prestigious scientific journal in June of this year. I will include a link to their latest publication and an easy to understand explanation:This message had a very strong impact on me. Orit was a very smart woman. Sean is a doctor. I trust their judgement. And I agree with their priorities.
http://www.fbmc.fcen.uba.ar/materias/qbiia/seminarios-2012/ seminario-6-28-y-30-de-mayo.-hi poxia-y-autofagia/ A-Nature%2012%20AOP%20may6.pdf
Here is a link to an easy to understand summary of the research:
http://www.ottawacitizen.com/health/ discovery+offers+hope+cancer+he art+disease+miracle+drugs+with +video/6574966/story.html
Donations in Orit’s name can be made online by using the following link:
https://secure.e2rm.com/registrant/ donate.aspx?TributeType=Memoria m&EventID=1819&LangPref=en-CA& Referrer=http%3A%2F%2Fohfounda tion.ca%2F
The first page will capture the information regarding the person making the donation. Under “Donation Information”, please choose “Other” in the drop down menu and specify “As requested by family” in the space provided. Once the donation portion is completed, you’ll be directed to a page to indicate that the donation is being made in memory of Orit and to indicate if an acknowledgement should be sent. Tax receipts are immediately available after donation is done.
Donations can be sent by mail (indicate in memory of Orit Fruchtman) to
The Ottawa Hospital Foundation, 737 Parkdale Ave, 1st Floor, Ottawa, ON K1Y1J8.
Donations can also be taken by phone by calling (613) 761-4295.
1 in 8 women will get breast cancer. Research is the only path to finding better treatments and a cure to this disease, which has devastated our family and so many others across the world.
Love, Sean
"The true meaning of life is to plant trees, under whose shade you do not expect to sit.” Nelson Henderson
Let's do something great to honour a wonderful woman. Let's help fund research that will effect real change. I donated. Will you?
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