.......... simple pickup awakens the advocate after a 3 year hiatus......

....... and has angered many of us going through a breast cancer journey.... 

according to Daily Dot.com

"The reigning bros of YouTube pranks have a thing about burying their faces in women’s chests. At Comic-Con 2012, Simple Pickup asked one costumed cosplayer if he could “motorboat” her. When she said no, he did it anyway. The group offers tips and advice for “guys like you” to “get laid,” and judging from the YouTube channel’s success (1.1 million followers), it’s found a substantial fanbase of dudes who feel they need it. But often, critics argue, the “advice” verges on harassment and humiliation. Simple Pickup videos have sparked aprotest among feminist bloggers for making a joke of unwanted sexual contact—sitting down on a stranger’s back so she can’t move, for example, and then rubbing her skin.

In another video, set at a gay-pride parade, one of the guys asks a stranger, “Are you trying to get raped? Because I’m down to rape you if you’re down to get raped. Just kidding. I’m not gonna rape you yet.”

In the most recent Simple Pickup video, the dudes might be looking to assuage some of that criticism by donating money to breast-cancer-awareness funds. There’s one catch, though: They’ll donate $20 for every woman who lets a Simple Pickup bro squeeze their breasts together, stick his face in between them, and shake his head back and forth while making abrbrbrbrbr sound."

So,

I wrote a letter to the BCRF..

-----Original Message-----
From: Marita  (removed this for privacy)
Sent: Saturday, October 19, 2013 10:48 AM
To: BCRF
Subject: 'Motorboating breasts' breast cancer awareness

Good morning,
I am a breast cancer patient with metastasis in a second diagnosis.  Recently I was sent a link from a friend of a breast cancer awareness campaign on You Tube that showcased 'motorboating' breasts.  They claim they have donated to you the sum of $2,080 for research.  

This was certainly done in poor taste and does nothing to create awareness of this deadly disease.  While I applaud the effort to fundraise for this disease, I am certainly at a loss as to the extent that some people will go to gain awareness of their own business ventures by using our disease to do so.

I would like to know if in fact they did donate this money to research as they claim.  I am a patient advocate and spokesperson for women in this journey and it is important to those of us in this journey to be respectfully represented in any and all fundraising ventures.

Always,
Marita DeVries
http://maritablogsherstuff.blogspot.ca 

Sent from Marita's iPad

.. but they had already refunded the group the money they had donated online without so much as checking to see if this was an acceptable way of fundraising.... let's see the logic in accepting funds from 'men' who have a reputation as already outlined above, suddenly gain a conscience and decide that they should do the right thing..... by motorboating 20 something women on a public beach while telling them that they will donate $20 for each time a woman allows them to motorboat their breasts??  This, according to what they tell the woman is for awareness and fundraising for the BCRP, who has no idea what they are doing to fundraise.... according to the return email sent to me by the BCRP:

"Dear Marita,

Thank you so much for bringing this to our attention. Yes, there was a donation made. However, the donation from the makers of this video, Simple Pickup, came in via BCRF's online automated donation page without our knowledge of any of the activities involved in the making, solicitation, and distribution of their campaign.

We appreciate efforts to raise money to advance breast cancer research, but out of respect for the community of women and survivors that we serve, we asked Simple Pickup to cease all references and associations to our organization and refunded their donation immediately.

Thank you again for your concern and ongoing support-and we salute you for putting yourself forward as a patient advocate and spokesperson!

The Breast Cancer Research Foundation"

I must say that I was duly impressed by their letter and their immediate response.  

My comments however were promptly removed by Simple Pickup on their FB and You Tube site. Some responses sent to me via YouTube patrons of Simple Pickup told me to FU....  the same kind of 'men' who would likely have punched the living daylights out of any man who touched their partner's breasts.  But it's OK as long as it is for a good cause..... only now the money has been returned.... and not because the Foundation doesn't need money but it sets a dangerous precidence to accept money by men who have just groped women's breasts and using their Foundation's name without permission. PERIOD.  

The sum they donated was $2,080.  To get a real perspective of how much $2,080 is to a cancer patient...... my needles which are not covered by OHIP after chemo cost $2,600 each.   I need one after each chemo.  Over the past 4 years I have had 11 chemo treatments with an expected 1 left to go this week... so 12 x $2600 = $31,200. That is the cost of my car. 

Fundraisers are an important aspect of research and these dollars are hard to come by in the current economy and so I thank the BRCP for upholding their morals, values and show of respect to those of us in the journey.  For those who chose to attack me, I wish you all the best and hope that your Mother, sister, daughter or wife do not have to travel the same path as I or many of my breast cancer friends have.

Respectfully, 

Marita DeVries, Patient advocate and spokesperson.

.... an evening of celebrations and emotions....

..... at the Bellamere Winery for a lovely evening wedding last night.

Max woke me up entirely too late in the afternoon and it was great that I didn't have to spend any time to get my hair ready for the evening events.  I had purchased a black scarf to match my evening attire.

We have been invited to a wedding for the son of a close neighbor friend.  I was unable to make it to his fiancee Kylie's bridal shower a few weeks earlier,  so it was really important for us to make this event.  We made it with just minutes to spare at this really lovely venue.  Sue and John, our other close neighbor friends are sitting at the back of the event and we slide in next to them.  The post in front of my chair would not prove to be any sort of hindrance and we were able to witness the joining of two perfectly paired people...  I remember my wedding day.... it was a perfect late August wedding 12 years ago at St. Paul's Cathedral.  It was magical and I married my soul mate that day.  I lean over and put my head on Max's shoulder and my hand across his back.  It seems so long ago...

The dinner was great and after we danced.  I love dancing and I was able to boogie on the dance floor but it didn't take long to realize that I was trying to catch my breath and never quite felt that I was filling my lungs.  Sue was concerned but I assured her that I was just fine...why worry anyone when you are at a wedding.  Then a Jim Croce song began 'Time in a Bottle'.... a song I knew quite well from my choir days in middle school.  I sang this one at a concert.  I turned to find Sue sobbing and apologizing to me.  The tears began to stream down my face when I realized how deeply and emotionally concerned she really was.  We held each other and she kept trying to apologize between wiping her face and hiding it so no one could see her.  Its OK Sue, I am fine for now and while we do not know what is coming our way... the words of the song rang so true.....

Jim Croce - Time in a bottle
If I could save time in a bottle
The first thing that I'd like to do
Is to save every day
Till Eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you

But there never seems to be enough time
To do the things you want to do
Once you find them
I've looked around enough to know
That you're the one I want to go
Through time with

If I had a box just for wishes
And dreams that had never come true
The box would be empty
Except for the memory
Of how they were answered by you

But there never seems to be enough time
To do the things you want to do
Once you find them
I've looked around enough to know
That you're the one I want to go
Through time with

Jim Croce passed away on September 20, 1973 as a result of a plane crash... he was only 30 years old and the father of a 2 year old boy, Adrian, who would create his own record label Seedling Records.  Jim's wife would open up a restaurant 10 years after his death.... something they had always wanted to do together.

It's a great lesson for all of us on this wedding day to always strive to do want you want to do and to find the time to realize your dreams.... Max and I might not have everything but when I watched him dance from across the room from our teary perch, I couldn't help but laugh uproariously when he was jumping around and dancing to the Y.M.C.A song that played right after.  He is my soul and an amazing human being whom I am just happy to be with no matter where we are or what we are doing.  I love you my amazing husband and I love you Sue for wearing your heart on your sleeve and stopping time for those few minutes when we connected.  I love all my dear friends that were so kind last night and made sure they let me know how much they cared in the words, the gentle hugs and touches throughout the evening.... even the tears that brought my own coursing down my cheeks, the kisses and the 'I love you s '........ I looked around enough to know that you're the ones I want to spend my time with.....

Thank you to my in laws for supper.... I am still tired but happy you came to have dinner with us.  Thanks to the boys for moving my big pots into the kitchen to keep them growing through the winter months.... hopefully they will continue to thrive.  William is homesick but holding his own.  I spent last night texting him to help him smile.  I miss him like crazy and can't wait to see him at Christmas.  Max wants to go on holidays and we will have to see what happens this week with the oncology appointment on Tuesday.  I will find out what the CT scan has to say and am praying that I do not have to do any more chemo.... but he did say he wanted me to do all six and perhaps it will be the last one this Wednesday.  

..... Pink October....

..... is in full swing and I just want to hide....this is the one month of the year we can see the phenomena of 'pinkwashing'.  With 30 years of fundraising and the pink ribbon awareness campaigns come many parasites who take advantage of those who want to help the cause by selling 'pink' items that in many cases serve to pad their pockets.   There is the belief that bringing awareness through the purchase of pink items is somehow helping to fund research or helping women in need..... but it is a buyer beware and many people will not read the fine print that is provided on items that are 'pink'.  Some companies will only offer 5% of the proceeds of the sale of their product up to a maximim of what usually amounts to a relatively small amount.  Once this ceiling is met, there are no laws stating that they must remove the pink ribbon.  This has opened the doors to tremendous abuse and taking advantage of well meaning people.  I have chosen to not wear the pink trinkets I purchased at a fundraiser in my first journey.  The one trinket hangs from my mirror and with its now exposed copper under the shiny coating.... it is symbolic of the cancer lurking under my pink skin.  Breast Cancer is anything but sexy and now this year, there are a few more 'awareness' campaigns such as 'save the tatas' and 'motorboating breasts' and 'I love boobies' which are disappointingly disrespectful of those women who no longer have breasts from the cancer that has threatened to take their lives.  If a campaign truly was putting the best interests of the women they say they are fundraising for, they would respectfully run them with a deep sensitivity for their journey.  For those of us with a metastasis, the shine of pink has tarnished like the cheap trinkets offered by many fundraisers..... don't get me wrong, I am grateful for the desire for so many to help those of us going through the journey and those about to get a diagnosis this year..... please spend your hard earned money directly to research or support a woman you know by providing a cleaning service or bringing dinner. Somewhere along the way, we have learned to expect something in return for donating money, perhaps just knowing that every cent you donated will go towards a brighter future when we no longer have to fundraise.  I look forward to November when I will hopefully be done my chemo treatments and move forward with my life..... and the next awareness campaign of movember.... which I do support without expecting to receive a plastic mustache to hang on my rear view mirror...... For my friend who is a colon cancer survivor.... I am still on the fence about hanging a plastic poop or car 'freshener' on my car air vents to signify a reminder to get a semi annual colonoscopy.  My rearview mirror might not actually be able to accomodate the plastic nuts for testicular cancer..... I guess you get the point....

Today I am at a CT scan appointment at UH.  It is Thursday, I have called the dentist office before getting ready to head out to the CT scan.  I am on hold so I am watching a quick video on FB which surprise scary ending has me screaming into the phone just as the secretary picks up the phone..... she is tenative as she asks me what she can do to help me.  I can sense in her voice that she wants to asks me what is going on but  I don't miss a beat as I ask her to book Lydia for a pre-determination for braces.  I am hoping that the dental insurance I have signed up for at work will kick in before we head into the summer break and then pick up again in the fall.  We will be living on a shoestring budget by then.....

I am afraid of the IV and the tech comes out to speak to me.  She is gentle and we talk about using the vein that has begun to harden in the crook of my elbow.  She says she will try it and if it doesn't work then she will look to finding another vein.  She is successful but before she can hook up the saline syringe the blood is running out and takes us both by surprise.  She asks me if I am on blood thinners and I am not.  She pushes a second saline syringe into the IV port.  Well that is certainly a first.... I look up and I can feel the sting of the IV where it entered and the emotions begin to well up quickly and unexpectedly.  I assure her that I am fine..... just that I have had enough pokes and prods.  I take a deep breath...and am relieved that this part is over.  She is still mopping up the blood from my forearm with a gauze and then washes it down with alcohol swabs.  She looks into my eyes and says that I have the right to be emotional because no one knows what I am really going through.  Some days I don't either.  There have been some very trying days along this journey but I am truly grateful that I am still journeying and still with my family.  

I will have to scoop in a few teaspoons worth of the throat contrast in the form of what has the consistancy of facial cream in a small plastic pot.  The tech lets me know that the lady before me thought it tasted good??  Good grief!!!  I choke the 3 teaspoonfuls down and rotate my feet to face the scanner.  The tech will click the IV for contrast into the IV line in my right arm.  The first scan will be done without contrast and the consequent scans will be done within seconds of the contrast running through.  A prickly warm sensation fills the arm and just as quickly is felt in the bladder.  I always think I have peed myself but the sensation goes as quickly as it came.  The whole proceedure only takes about 10 minutes.  Max is in the waiting room doing a puzzle on his iPad and finishes up as I return to the cubicle to change out of the gown I have borrowed for the proceedure.  I just want to leave but have to hold down on the vein for 10 minutes to make sure it closes OK.  When I go to change I push the door closed and wow, that door looked heavier than it was and I startled everyone in the waiting room when it slammed hard against the door jamb.... oh dear!!!

A lunch date with my husband at Jack Astors and a quick run into the local Chapters store afterwards completes our morning errands. I love buying books for the kids as a treat and they are excited when they come home to find their treasures on the counter.  They are not spoiled and appreciate the occasional surprises,  They are great kids who always try to help us.  

I should mention that Mary came to sit in on a class last week. I conduct lectures on Wednesday and she tucked herself into a desk off to the side of the classroom.  She is a retired VP at the highschool I taught at during my practicum and a true survivor.  She likes how I engage the students and that means a lot to me. I admire her and always look forward to her visits. Thank you for travelling to see me. xoxo My journey has put me in touch with some truly amazing people who have touched my soul with their own life journeys.  My friend Adrienne, who teaches at the University will come and visit with me in one of my labs to see how much fun we have.  

Today was hysterically funny in class!!  One late student walked right in front of me as I was lecturing so I simply walked with him to his seat in the back as I continued to lecture.  I sat beside him and continued.  The class thought that was marvelous and offered a rousing clapping for each consecutive late student.  For the one chatting in the back, I sat beside him and asked him why he was talking.... he quieted down and stayed quiet for the remainder of the class.  It was a good humour break in a long week.  They took notes and asked great questions as they head into their first test of the semester.

There have been so many really and truly great and wonderful people who have come into my life.  some of them I have yet to meet.  One of them, whom has been so supportive of Megan (met and connected during a chemo at the cancer unit 4 years ago) and I since our first cancer journey, has been through so much and recently lost another family member.  I have vowed to make the time when I have done my next chemo to get together and have lunch.... there are many hugs waiting Reinhart when I finally get to meet him face to face.  I am truly blessed.  I dedicate this blog to all my friends who have been through so much and yet, have the strength to go on and show support despite the difficult path they sometimes travel on.  I am sending love and hugs.

.... a request to post about mesothelioma Cancer

My posts are traditionally about my cancer because its the one I am most familiar with.  I am also aware of the cancers associated with asbestos.  It is not just about the miners who mined for the asbestos as a fire retardant material - I had an 'Uncle' who, as a fire Chief for the Armed Forces would showcase a suit of asbestos when entering a fire to retrieve rings..... he was only aware of the fire retardant qualities and not the safefy hazard to his health.  Years ago, during the energy crisis, the North American governments offered incentives to insulate homes.  Vermiculite was mined as a natural insulator that could be blown into houses and would maintain their shape.  Unfortunately where you find vermiculite, you will find asbestos.  The health hazards are not immediate but take years to occur.  Here is a good PDF to read.  Do you have vermiculite?  http://www.robgolfi.com/wp/wp-content/uploads/2011/06/BEWARE-and-BE-Aware.pdf

Thanks to Emily who emailed me to ask about creating an awareness amongst those who follow my blog and I did because I have worked amongst asbestos wrapped pipes, wall and floor tiles and even my old South London home which had vermiculite in it.  One of my neighbors in the neigborhood installed his own vermiculite in the 70's and used so much that it pours out of the walls whenever he opens up an electrical outlet. He wasn't concerned about the constant cleanup this required whenever a renovation was done.  While the mines are still open and producing, it is not a product available for home insulation.  At one time, vermiculite was available in potting soil.

Check your attic carefully under the new insulation that may be hiding it beneath.  If left alone and undisturbed, it does not pose a health hazard.  If you have vermiculite in your attic or walls, you will need to contact a professional to remove the product safely.  It is not a DIY project and requires special knowlege and set-up to perform it safely.  

Thank you to Emily for reminding us all of this close-to-home hazard.  I have posted her information poster below.  It should reflect our Canadian content but essentially it is close to what we here have experienced here north of the border.

courtesy of Emily Walsh, Community Outreach Director   www.mesothelioma.com

.... what is Metastatic Breast Cancer and what is Staging?

I have had a request to re-post this blog about Metastic Breast Cancer and the benefits of using MRI in diagnosing breast cancer.  If it had not been for the MRI, I would not be here right now.  Mammograms do not work effectively enough to detect tumours in dense breast tissue and are classified as X-Rays.  Here is a link that explains more about this.

http://www.healthline.com/breast-cancer/anatomy-animations#1/breast-cancer-where-it-starts

October 2014 is just around the corner and with it comes the Pink Parade of Awareness.  Please remember to Think before you Pink!!!

Here is my blog from last year when I was in chemo and teaching... this year I enter my new year in pain but full of energy and ready to go!!!


October 13th 2013 was declared Metastatic Breast Cancer Day but there were those who decided to overshadow the day to declare the it as 'Save the Tatas Day' by asking women to remove their bra in support of Breast Cancer Awareness.  Like our society still isn't aware of this deadly disease?

  I am not entirely sure why or how these things come about but the short of it is that it is incredibly insensitive to those of us going through the journey.  Breast Cancer and its metastasis is anything BUT sexy and yet, we see these posters showcasing beautiful trim young women unbound by their bras.  Perhaps a more realistic photo from the front that shows the scaring and missing flesh of women who have sustained multiple surgeries to save their lives and the emotional/mental/economic impact this disease brings with it.  It is easy as an outsider to get caught up in all the hype with this being Breast Cancer awareness month and to throw your money on anything pink with all good intentions..... but those products and the hype do nothing to support breast cancer and as far as awareness.... the poster only has to say breast and you have their attention.  Manufactuing companies using the pink ribbon have long ago stopped giving money... you only need to read the fine print on their products.  Support research directly or support someone going through the journey through housekeeping, meals or bills.  Yes, even in Canada, it is expensive to go through the journey once you lose your job, insurance coverage and are unable to pay the bills.  I keep emailing a 'Pink' product company selling on FB who announced last year that they were moving into a renovated factory to accomodate the rise in orders to ask them what their profit margin does for the benefit of Breast Cancer?  I am still waiting to hear back from them.....  It sickens me to think that reading all these posts on their site about the latest cute pink product is making them rich while they let their customers believe they are doing the right thing by supporting through awareness.  This is a billion dollar a year business.  More on this another time.

What is the early stages of Breast Cancer?

Breast cancer when caught early enough is usually dealt with by surgery, chemo and/or radiation.  It is normally picked up with a monthly physical exam and often by the partner of the woman.  Some symtoms are very subtle and unless you are paying attention, the cancer will continue to grow until the symptoms become more obvious.  In my case, the left breast and nipple were very itchy and some days I couldn't get relief.  It would be 8 months before the lump became large enough to feel it and when it presented itself, it was visible.  This is rare to occur.  A mammogram did not pick up the lump but the ultra sound and consequent MRI did.  I had no less than 6 mammograms which still did not pick up the lump even after the biopsy was performed in the ultrasound lab a few minutes before.  Ironically I thought I had colon cancer and requested a colonoscopy in June of 2008.  A year later I would be diagnosed with breast cancer.  The body does try to let you know something is wrong if you pay attention and pursue it with a good medical doctor.  I have discovered in my journey that a supportive doctor and a desire to self-advocate will be your best measure for good health care.  One lady spoke to me about her family doctor that felt she was imagining things when she told him she was sure she had cancer and so he sent her to a shrink... two years later, she pushed to see another doctor and was told she was in stage IV liver and lung cancer with a poor prognosis for survival.  Intuition has been my guide.  My original doctor missed the diagnosis and when I finally got their call I had already taken up with a known good, supportive General Practitioner, who had already booked me for surgery and a follow up.  Thanks to my survivor friend Sue who was quick to contact her doctor and put her in touch with me the day of my diagnosis through the woman's clinic.  I had sought help from the woman's clinic after a failed diagnosis of a non-cancerous condition from my colonoscopy through my then family doctor.  Needless to say, that family doctor was dropped immediately.  I did let them know my disappointment in missing two diagnosis and suggested the doctor call me back and speak directly to me.  I never heard from him again.

The lump is usually removed with the goal of saving the breast (breast conserving surgery) and a small margin, usually 2 cm surrounding the lump is removed.  All tissue is checked to ensure that the lump was successfully removed and the surrounding margins are clear of cancerous cells.  If the margins are not clear, another surgery is involved and a sentinal biopsy is performed.  The sentinal node is the first node closest to the lump which is harvested and tested for cancerous cells during the first surgery.  If this tests positive, there will be more nodes harvested under the underpit.  All harvested nodes will be put through pathology as will all tissue and a determination will be made as to the next step in the medical part of the journey.  The 23 + nodes they removed from the armpit proved to be healthy.  I deal with the occassional lymphatic edema in the left arm which necessitates wearing a compression sleeve.

Radiation is an option they will explore when considering the cancerous cells in the breast and if the margins were questionable.  At this point, if there are any trials being conducted that you fit into their criteria, you will be asked to participate.  I participated in the Rapid Trial which reduced the time of the radiation to only 5 days 2x per day from the standard of 35 days, once per day.  Once radiation is done in a specific area, it will not be allowed to be performed again.  In cases of metastasis to the bone or other regions in the body, it can and would be an option.

There are three hormone receptors they look for when testing the kind of breast cancer you have so they can create a plan to destroy or control the cancer you have:

Endocrine receptor (estrogen or progesterone receptor) positive

HER2 positive

Triple negative (not positive to estrogen, progesterone or HER2

Triple positve (positive to Endocrine receptors and HER2)

I have Triple negative which affects only 10-17% of all breast cancer diagnosis.  Chemotherapy is the option used to control this cancer.  BRCA1 gene mutation is usually associated with this type of cancer and the one in which Angelina Jolie was diagnosed with.  The prognosis is generally not as positive as the receptor postive cancers which can and are controlled to prevent a reoccurance through medication after chemo and radiation.  A family relative recently told me that triple negative was 'no big deal'.  Perhaps to her its not but yes, cancer in any stage is a big deal.  It is detectable which means the immune system was unable to identify and destroy it when it first began to develop a tumour.  There are many 'experts' who have no experience and who are willing to offer their spin on your medical condition.  These are not the kind of people you would be wise to hold court with or the kind who would offer you the support you need because their needs always come first.

This cancer is insidious and in my case, it was found in my neck 3 years after chemo ended and upon scrutiny in the pathology lab, it was noted that the cancer in fact had not been eliminated and that its DNA was identical.  It merely hid and with a catalyst, likely in the form of high level stress, it began to grow again.  Taking care of parents, going to school full-time, too busy to sleep or eat properly.... the list continues.  When the immune system is challenged enough, its defenses go down and the cancer begins to grow.  I am classified as asymptomatic and with only a lump discovered when I dug my fingers under my clavicle while studying one night, it became obvious that something was amiss.... weeks later I would be exhausted beyond fatigue and weeks after that would lose the ability to draw in enough breath to feel comfortable. 

What is a Metastasis and Staging?

When the cancer mutates or hides (in my case) and finds its way into regions outside the point of origin it is considered a metastasis and will include a staging level. I have what is classified as a 'Regional Metastasis'.  It has relocated to a position nearby but away from point of origin.  There are different stages to a cancer diagnosis and it depends on how involved the body is with the cancer spread.  My diagnosis in the beginning stages was classified as a stage II.  Stage II means that the cancer is no longer contained within the mass but has begun its move away from its original confines.  My sentinel node biopsy was positive and contained cells from the tumour from inside the milk duct it had begun life in.  (***side note - this was likely the same duct that had an untreated mastitis infection while I was nursing after my last pregnancy, but no concrete evidence on this to confirm or deny it).  The sentinal node is the first lymphatic node just outside of the tumour and the indicator that the tumour is on the spread.  Other nodes are harvested in the region to see if it has indeed gone beyond just the sentinel. 

My second diagnosis is classified as a Stage III.  The cancer is still contained in the lymphatic nodes in my neck, under the clavicle and around the lungs and heart but it is no longer at the point of origin.  It is currently being controlled by chemo and one that is not the same strength as the original full-guns approach from 4 years ago.  This explains why I still have hair on my head, albeit thinned and courser.  There are many women living with chemo to control their cancer who sport a full head of hair who you would not know were going through a cancer journey.  Not all chemo will cause hair loss.  I did say control because at this point there is no determination of cure.  We in the Triple Negative class look to a day when the doctor declares a NED (No Evidence of Disease) and puts you in a careful watch program just to see if it stays that way.  No evidence does not mean cure.... it merely means it has become undetectable.  Cancer cells are microscopic an as such can travel anywhere the endocrine or blood system can take it.  I can only speak to my own experience when it comes to the emotional and mental fallout that a diagnosis like this means to me.  It is daunting some days to consider your own mortality when your 80 year old mother declares that she is tired of living and can only forsee being around for a few more years..... I look at her and mutter that I am merely looking at 50 next year.....  It is a waste of energy and effort to reach out to people who clearly are unable to show you care or concern during your lowest moments... they are the drama queens.... leave them alone and focus on those that do want to support you with love, care and concern whether they are family or a close friend.  The only experts who should be addressing your medical needs or information are the ones directly responsible for your care.  Anyone can 'consult' with the internet but only the doctor trained in your health matters should be giving you medical advice or prognosis.  

The final stage of cancer is Stage IV.  Yes, there are only four stages.  This stage involves critical organs and most often are the liver, lungs and bones.  This is still a survivable stage but a difficult one to manage.  Chemo and radiation are choices in these instances.  There are those patients who will have tumours shrink to a manageble size to operate and eradicate.  In my Aunt's case, she has been living with bone cancer for the better part of 30 years and is still around.  She also still smokes... her reasoning was simple.... I will die anyway.... only 30 years later, she has a smokers cough and is still alive!!!  Cancer doesn't make sense and yes, there are many really successful stories out there and miracles do happen.  The mind is a powerful thing and keeping it positive will most assuredly help along with plenty of rest, good food and greatly reduced life stresses.  Positive attitudes can carry you far and reducing the negative people in your life is a great beginning. 

By end of Stage IV, pallative chemo is used to only manage the pain and symptoms of a dying patient.  They will be generally cared for at home by nursing or in hospice after considering an end of life care plan.  I remember reading a poignant blog in my first journey from the woman who started the Lymphedivas company in the States.  Right up to the end, in her hospice room, she was still trying to assist the doctors in coming up with a chemo cocktail that would extend her life..... the last exerpt was from her husband who announced her passing at the age of 37.  Her blog is still available to read as are so many others like mine.

Where do we go from here?

This week will hold some more answers as I head into CT on Thursday.  This will determine from the baseline test I did before chemo started and the one at the midway point in chemo if we continue with the chemo I am currently on or if we change it up.  I am able to breathe well now and have a lot of energy.  When I run out of steam, I simply go to bed to sleep. My current work schedule is well paced and I am able to rest in between classes.  The hardest part of a chronic condition is coming to the realization that life will never be the same and coming to terms with your limitations.  My mother-in-law affectionately called me a control freak but we both know that it is important to me to feel that I have some control over my life and the decisions I make for it and my family.... now I have to consider limitations which I have never had to consider before.  I always keep my options open but am learning to say no more often.  

.... out of the blue....

..... came a lovely card from a neighbor.  When I opened this personally designed card after reading the heartfelt words.... a small pocket angel token dropped into my hand.  The tears were not far behind as I stood staring at yet more wonderfully kind words.  Max popped his head around the corner and braced himself for another melt down when he realized I was trying to smile feebly between big drops of tears dripping off my chin.  He hugged me and gave me a kiss before returning to his office.

Earlier in the day, Sarah came for a visit bearing my favorite beverage....Chai Latte.... hmmmmm, so yummy and one of life's great elixers.  Her burgeoning belly reminds me that baby is coming soon... I have washed the quilt I finished for her 3 year old and it is hanging off the clothes line.  This morning she will sit at the kitchen counter and help me bake cookies with the ingredients the children helped me to purchase at the bulk barrel.  When the kids were helping me, they asked for candy, which lately has been a rare treat for them.  Cancer loves candy and I have resorted to baking but not imbibing... it is certainly a different lifestyle considering my sweet tooth.  The choice to reduce this was a suggestion the doctor had made 4 years ago and which I have only recently adhered to.  I have lost 5 pounds since I gave it up in my first chemo round.  Sarah would like to have the baby sooner than later but it looks like the little Miss likes hanging in.  Poor Sarah... I remember those days near the end and just before delivery.  We laugh about the similariites in our journey, her with baby brain, me with chemo brain and just feeling like the victim of an alien invasion.... it's good to share these peaceful moments with Sarah.

The sun for the past few days after a bunch of rainy depressing days fills the soul and warms my legs as I sit in the gazebo sipping on a cup of coffee in the early afternoon.  The sun is still lovely and warm but lower on the horizon signalling the ascent of fall.... and a beautiful one at that.  I write out a thank you note to Sandra after packing a half dozen cookies in a little gift bag.  I will walk them down the street and say thank you for her thoughtfulness.  I glance up at the clock behind me in the kitchen and decide to drop in before our girls are due home from school.  I am half-way down the street when her husband pulls around me and heads for their driveway.  Sandra gets out of the passenger seat and meets me part way.  The tears are out before I can utter a thankyou and she starts to cry.  We are just hugging in the street and bawling like kids.  I hand her the cookies and tell her how deeply grateful I am for her well-timed kindness.  Yes, the angel is tucked into my wallet next to my medication for the next round of chemo... I will hold her in my hand when I have to get my IV inserted again.  She invites me in and we chat for an hour.  I am blessed that she has such a loving and kind heart.  She understood in my first journey that I was pushing people away.... I just didn't want to drag anyone through what I was going through and for her, I had not been kind.... I have been deeply sorry ever since and have apologized at every chance I have been able to ..... she just hugs me and lets me know that she understands and lets me know that we all make mistakes.  She has taught me more than she can ever imagine... it is a blessing when someone comes into your life and sees past your imperfections to love you anyway.  The tears fall again and lots of hugs later, I am back home a brighter and happier me better prepared to take on the next round.

The next round will come on the 23rd of October but not before the CT scan that will happen before it. On the 17th I will head in for a scan at UH.  I have requested an IV team to insert the IV because of my last two IV's were incredible painful. The veins have had enough and now the veins being used are in the most painful locations - back of the hand and the wrist.  I am praying that this will be the last of my treatments.  The nurse who visited yesterday lets me know that thankfully my blood pressure is down and the pressure in my chest is likely the result of my bloated bowel.... he is right as later my system crashes and my intestines go into spasm....thank goodness I was at home at the time.

Just before I head up for bed I receive an email thanking us all for creating a really great program at the college this year.  This day has been so life affirming and so wonderful and really what I needed to fill the spiritual well that had begun to feel a little empty.  I cannot express how deeply grateful I am to all those wonderful people in my life who have appeared to support me in so many heartfelt ways.  From the bottom of my heart, I am truly grateful to each and every earth angel who has made this week the best from what began as the worst week so far.  I  am truly blessed. I humbly thank each and every one of you.  xoxoxoxox

Thank you to Pat who has lent me a little oil warmer complete with essence of orange to fill the air with a natural antibiotic for the germy season.  Hugs to you for having Miss Lydia over for a sleepover and for all your kind words and affections.  Thank you to John for the amazing news!!!!! Thank you to Sara for wearing a face mask and for always supporting me no matter what the score is!!!  Thank you to Stepanie for the hugs and support.  Thank you to everyone who said something kind and made me laugh this week. To my husband who is a trooper and who loves me no matter what... you are my hero!!

.... so what do you say?

This week has been an eye opener for me.  Often times we try to do or say the right things and we think we are being helpful.  Those of us in the journey understand that... what we fail to understand are those not in our immediate health team who apparently know more than anyone else?  Recently a friend of mine went through major surgery to remove and then reconstruct her breasts.... only the surgery was a failure, learving her in a position no woman would ever consider could happen to her.  Yes, while these are rare, they happen.  For one of the first times I was without words to describe how I was feeling about this devastating news and as an outsider looking in... you cannot possibly imagine the angst this woman is going through.  I was honest.... I told her that I wanted to support her but I was at a loss to say anything that could ever possibly make her feel better and I did not want her to feel she had to explain or make me feel better about my inability to communicate my deep sorrow for her journey.  She understood.... we talked for over an hour as I tried to get my head around what she was going through and I have to admit.... I could not.  I have shed so many tears and worried for her and I keep praying that the breast that died as a result of insufficient blood will not make her sicker while they attempt to pull together another team to remove it without dislodging the blood clots in her lungs...... just when you think you have it tough....

So what have I learned that I can impart to those, like myself, who hover on the outside trying to comfort someone in pain?

1.  You do not know what they are going through, so don't offer ANY advice.  It comes across as being a 'know-it-all' and dismissive... to say the least.  I had a family member call me up in my second diagnosis to tell me that my cancer 'was no big deal... you've gone through it before, you can do it... while that is bolstering advice... it came from someone who never calls me....EVER!! 

2.  You are not their doctor, please do not offer up something 'I heard about....' Trust me, they have heard enough up to this point and you might be the one who finally gets the backlash.  

3.  Please stick to your own expertise, she has an entire team to consult with and unless you are one of them, talk about the weather or make her laugh... it's safer.  

4.  Research is great, only everyone is different. I have a cancer that only 15% of the breast cancer population has.... research in a petrie dish does not equate with a cancer strangling your carotid artery when you are trying to breathe.  Please refer to #3

5.  Ask what you can do or ask what help they have?  Hire a maid and send them over because no one will ever ask you for help unless you are their Mother.  Don't offer unless you fully intend to follow through.  A friend of mine did just that and it was one of the best gifts ever.  

6.  Drop off a meal.  Ask them what they can have and then deliver a full meal.  (My friend Mandi has this down to a science.... she tells me when she is coming and arrives with enough to feed the family - bless you baby for your kindness)  She has involved her family and they proudly present their offererings every chemo.  

7.  It's not personal - if you have made a mistake and have upset or hurt the person, you need to own it and apologize.... you make it worse when you try to make excuses or play point the finger.  Grow up.  Reality - people in pain lash out at whatever is annoying them at the time...visualize someone whacking a bees nest with a large stick and then the swarm attacking in hopes you will go away and leave them alone!!!! be prepared to put on your 'big girl panties' and say you are sorry.  Those who don't understand... never cared in the first place.

8.  If you are not close to that person - do not call them!!!!!  Family or not, your call in their moment of need can backlash quicker than a toddler on a time out.  Send them a card to let them know you are thinking of them or send flowers. If you must call make it quick and find out when it is a good time to get together... preferably when they are feeling better and if they want to see you.  Years ago, a woman who had been badly assaulted, was laid up in a hospital room and was visited by a nosy neighbor... the type who loves to report to others about the 'current' condition and who was promptly put into her place by the assault victim before she had a chance to leave the hospital room.  She should have known better but her curiosity got the better of her.   

9.  Everyone has a story, please keep them to yourself.... there is nothing worse when you are diagnosed with a life-threatening illness that everyone wants to share their loved one's last minutes on earth.  There is a time and a place for everything..... except that!!!!  I understand that people try to relate and show compassion by finding a common thread.... this is not the time.  A friend of mine was subjected to sitting in silence in a hairdressers chair and made to listen to the most horrific details of a journey she did not want to hear about.... she just wanted to feel human again after her own diagnosis.  I was much luckier... in my first journey a survivor cut my hair, listened and then did not charge me a dime... that was her way of giving back and then closing the door on her journey.

10.  Have a sense of humour.  They are already down and depressed..... find something funny and work from there.  My sister called out of the blue and made me laugh till my gut burst.... it chased away the last of the chemo blues and made us stronger together.  She was honest and forthright with no agenda but to pull me out of the hole.  She knows that secretly, I am not strong, nor brave but a woman facing her own mortality..... scared and trying to cling to the life raft she has provided in the form of a belly laugh.... 

I have learned many things in my journey and mostly that family are truly odd ducks in the game of life. Some are amazing, know what to say and take charge in a loving and kind way..... while others show their true colours at a time when you wish they were something you had hoped they would be but find that they cannot and are deeply disappointed every time you try.  My mother doesn't know what to do or say and I call her on occasion to let her know that I am still around... I joke about this but essentially, she never could handle anything outside of herself.  I just tell her to enjoy her retirement and she is .... with someone else's daughter whom she has known a sum total of about 8 months.  No Mom, I do not know what you should buy her for her birthday on the holiday long weekend.  My mother lives in a retirement home a mere 5 minute drive from my house.....

I called my inlaws this morning.  Mom is too sick to visit and I miss them both so much.  She thinks that sometimes I can be a control freak, and hey, there are worse things I could be.  I laugh, because I know she means it in the best way.... one in which I like to believe, as does most everyone else, that somehow we are the masters and in control of our own destiny.... only, it is an illusion and we are not.  Sometimes you just have to ride the wave, hope for the best and stay the course.  Eve reminds me to keep going and to stay positive and in her kind supportive words, I feel better... thank you. I love you.

My husband might not always know what to do or say but he knows me best of all and tries to be there on the days I crash.  He says what he wants me to know and keeps his fears at bay.  He is truly there for me in this journey.  He takes the bad with the good and tempers his fears with his beliefs.  I am blessed for having him in our lives.  He might add a few more to my list of what not to say.... but he would emphatically agree that at the end of the day.... the magic of laughter can make the darkest days seem brighter.