Western education 2013

Tuesday, October 22, 2013

........ the news is in......

.......... and I am beyond comprehension......

It has been a trying journey and knowing how difficult the last chemo round was made me question whether I should be doing the last round if the CT scan showed significant changes in my lymph nodes.  I had a dream a few days ago and after speaking to a cafeteria worker who found out that she did not have to have her last chemo as a result of a clear CT scan.  She offered to pray for me and I gladly accepted.  As a matter of fact... there were so many family members and friends who were collectively sending best wishes and hope.  So on Wednesday, it was time to get a blood test in the cancer clinic and head in for a meeting with a deep breath and fingers crossed....

Dr. Eisenhower stepped into the exam room and i asked her right away if I absolutely had to do the last chemo treatment.  She looked at me and said "we were hoping you would ask us that".  She smiled and said "not if you don't want to".   Yesssssssss!!!!!  Prayers answered.  Most women would be told to continue through all 6 treatments as per the trials they ran but in this case as in others, there is no reason to continue with the nodes being normal size.  There are a few areas they are watching closely and will continue to watch closely over the months to come to see if they change.  My counts are a little low which explains the fatigue of the past few weeks.  I had a difficult time coping with the last round of chemo and perhaps it is time to see if the immune system can handle the job.  A CT scan in three months will show any changes.... and life as we know it will be forever changed.  

I wouldn't be human if I didn't admit that I have my reservations and my deep seated fears of it coming back.  I know that I am considered very fortunate in now my second journey and I am keenly aware  that deep down inside, it can decide to grow again and stretch farther to places beyond reach.  While I am even more eager to find normalcy and to get on with my life.... part of me has to hold back and consider where my priorities are and how I want to live my life.  

I have been instructed to stay the course of what I have been doing - resting when I need to, eating properly, staying positive and of living my life in a way that allows me to have the time I need to accomplish these goals.  Living a stress free life means - not burning the candle at both ends, doing physical activities that bring me happiness and being emotionally intelligent.  Long gone are the days of wanting to compete on a team.  Instead, I will pursue academic interests and project development.  I have a number of electronic projects waiting to be built, a raspberry Pi processor with an arduino interface..... I have been wanting to play for a while.  I also want to continue with my sewing projects, needlepoint and beading projects.... an expression of who I am and an opportunity to make something that brings joy to others.  I know that I have chosen well in my career and I love teaching.... especially showing the students the tricks and tips of a lifetime of skill building and experiences.  

Speaking of teaching.... I have an interview with the school board next week for just occasional teaching in the high school tech programs.  The experience of a job interview is exciting to me and I am not nervous.... weird but true..  Today, I just signed up for a one day course in Toronto next week. I will be travelling with a colleague.  While I may be considered disabled because of my illness by the medical establishment, I am one of many women who choose to continue to work and educate ourselves.  I love what I do and being involved with work has been very cathartic for my healing.  

Being involved in creating curriculum and teaching something that I really love to do is so important.  I was asked a number of times how it is that I was able to teach while going through chemo..... it was easier to work than it was to stay home.  Staying home in my last journey lent itself to boredom and a sense somehow that I was living on the outside of society.  It is a mental game and is closely tied to emotional well being.  I think for me, cancer is closely tied to the immune system which when it is under long-term stress only needs a catalyst to trigger it to outgrow the pace of the immune system's ability to control it.  The last two years have been stressfull and filled with occassions that need not have happened or better avoided.  Fast forward to today and I work with two amazing women who are incredibly supportive and who are wonderful to hang with and a department filled with some pretty wonderful people who have made my journey better than expected.  To my students, who have been wonderful and fun to teach.  In short, I am lucky for so many reasons and so many people...... 

The next 3 months will go by quickly and I will be on edge the closer we get.... CT scans or an MRI with contrast will light up tumours to indicate a growth.... we hope that day never comes again.  In the meantime, I will rely on my intuition that has been pivotal in letting me know when something is not right.  A number of my friends who have been diagnosed with stage 4 know that they ignored their intuition and symptoms... if you are not sure, put aside your fears and just have it checked out.  Lumps and bumps are not normal..... have them checked out.  Unusual deep fatigue, a change in eating habits (cravings for carbs and sugars), aches with no obvious reasons (neck, shoulder, rib pain),noticeable  shortness of breath, super itchy spot that has no obvious signs of dry skin or rash, a cough that doesn't go away or a cold that lasts way longer than it should.  A general feeling of malaise and a feeling that something is just not right.  Poor sleeping or eating habits can add to your immune stress.  Unusual weight loss. 

Keep a health log that allows you to monitor subtle changes.  My first symptoms started last October but were masked by a busy school schedule.  What I failed to do was recognize that I needed to take better care of myself. Listen to your body, rest and eat well.  Reduce sugar or eliminate it all together and keep the weight off by limiting the carbohydrates.  Learn about ph balance.  Keep only people in your life that bring you joy.  I will continue my blog.... and pray this is my last cancer journey.... 

Monday, October 21, 2013

.......... 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

"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."

I wrote a letter to the BCRF..

-----Original Message-----
From: Marita  (removed this for privacy)
Sent: Saturday, October 19, 2013 10:48 AM
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.

Marita DeVries 

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.

Marita DeVries, Patient advocate and spokesperson.

Sunday, October 20, 2013

.... 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.  

Thursday, October 17, 2013

..... 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.

Wednesday, October 16, 2013

.... 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?

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

Monday, October 14, 2013

.... 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.

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.  

Friday, October 11, 2013

.... 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!!

Wednesday, October 9, 2013

.... 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.

Tuesday, October 8, 2013

...... rough start.... good ending.....

..... it started rough....and ended with a wonderful call from my sister Patricia... she made me laugh and help take away the pain and angst of the long day that was finally coming to an end..... she has been such a blessing with her point blank sense of humour and the ability to pull me out of my funk.  Thank you so much and I love you endlessly.

Yesterday started with a Rogers Bill which I could not get my head around and Max had to sort it out... it appears that our son's collect calls have driven the bill up by an additional $500 over the past 5 weeks.... so, short of cancelling the phone altogether... we will just have to not accept.  I hit another wall around 11 am... damn you chemo brain and yucky gross stomach!!!!  Max tries to comfort me and doesn't know what to say.  This is the absolute worst I have been in any of my rounds and the agony of a boiling gut and chemo fog has me sobbing uncontrollably.  It doesn't help that the front page of the paper today is exhibiting an exuberant smiling face of a participant in the Run for The Cure.  I want to rant but I daresay it will only feed into how utterly crappy I feel today and the mental olympics it takes to not want to run screaming down a busy highway with a bullseye on your back.  I don't buy 'pink awareness' objects to decorate my body to announce my newest journey with this devestating illness... do you know that cancer is actually a very bleak and discernible blemish compared to the healthy pink tissue it invades.... so why isn't pink a color with a healthy connotation.  Well, I guess someone thought that pink is feminine and breasts are too, so the pairing seemed ideal... only we all think of pink in the best of light and not what it now represents to those of us in a daily struggle.  Read the labels on the 'pink' items and you will note that a very miniscule portion of the proceeds go to anything close to resembling research... you will also note that it is usually capped by the 'generous' company up to a certain amount, which was likely reached years ago and now it it awareness with a great padding of profits.  Put your money into the research coffers or to assist those who cannot afford the essentials while struggling to get through their disease.

Sara is ill and it has come on the first day of the lowest point of my immune system and I am scrambling to find a mask to protect myself in the lab environment where we will be working today.  After an exhaustive 1 1/2 hours later..... we find 1.  Later John would secure a half-box for Sara to use. I can't thank you enough for going the distance to help me today.  The labs went well and here Sara and I stood facing one another at the end of a very long day wearing our masks and grateful that all went well.  We left wearing them and someone said something to us as they walked by but we were both too tired to care or hear!!!  Later I thought to myself.... man, I so would not want to walk into a building where two masked ladies walked out of!!!!  I do not know what I would do without the support of wonderful, loving and caring friends.

The night would prove to be another challenge and today will be a long day but at the end.... I have friends dropping in whom I have missed dearly.....

I wish to thank my sister Patricia for her warmth and wonderful cathartic laughter!!!  You are an earth angel who knew how desperately I needed your phone call and your cutting wit!!!!  I love you dearly and miss you so much.... thank you for being a part of what makes my life so special and for knowing what to say on a day where I didn't know what I wanted to hear.  We will certainly write as soon as possible and Lydia sends you smoochies today. xoxoxoxo

Sunday, October 6, 2013

...... a day in the fog....

.... I have been up about a half-dozen times through the night.  The dogs and most specifically the cat hold a vigilance by my bed about a week into each chemo.... the gatekeepers of my soul should it decide to escape.  They know something is wrong, only they don't know what and so their constant presence can be quite disturbing when they want to keep nudging me at all hours as I lay in a psuedo- sleep.  Last night I went to bed deeply exhausted after spending a few hours marking papers.  The exhaustion is deep and a malaise sets in.  My head is in a deep fog and it has separated itself from my body as I stagger up the stairs to lay down.   I am in the spare room so that my foot wagging doesn't keep my husband up.  It is also so he doesn't have to worry about me in the middle of the night when I drag myself out to go to the washroom or find something to eat to quell the boil that begins to errupt in my belly.

I am lying on my back and the pressure in my chest is ridiculous.  The belly is grossly bloated from the steroids and a now lethargic digestive system.  I still have to bring in nutrients, quell the boil in the belly and yet balance it with foods that will digest easy and move along quickly.  Fresh veggies and fruit are best in these moments but they cause gastric issues as well..... it is a balancing act.  I still drink a tablespoon of chlorophyll in the morning to help things along and it seems to be the only thing that works well.  The pressure doesn't let up and I find myself up and about in the wee hours of the morning.  A friend Steve from England notes that I am up and awake on FB and we chat for a bit until he is drawn into domestic chores by his room mates.  They love his accent..... you just have to laugh at that.  I head back upstairs to the spare room for another attempt at sleep and find the cat is restless all over me and the dogs have yet again come to announce that I should likely feed and send them out for a quick pee.  I pull my weary body back out of the bed and experience the out-of-body-try-to-focus on what I am doing.  I manage to feed them, water them and send them out..... then back upstairs to bed.  I can hear Max a little while later trying to feed them again and I pull myself to the door of the bedroom to let him know that they have been attended to..... back to bed.  I am now in bed typing on my bluetooth keyboard on my iPad after having about the 6th nap this morning.  This is what retirement must feel like????!!!!  

Yesterday I called my sister-in-law Debbie. We can talk for hours and hours and we did.  We always have so much to say.  She is amazing.  She is candid, honest and frankly, a breath of fresh air... she just says what she thinks and I love her for that.  We laugh, we chat about everything and catch up as best as we can.  I wish she lived closer to us. After 2 hours, I pass the phone off to Max who chats with her for another half hour.... Debbie.... move closer, will yah!!!!  

I spoke to my mother earlier in the day and yes, her dementia is deepening.  She feels somewhat badly that she is unable to help me and because of the issues with my eldest sister, she is hesitant to 'bother' me.  It's no bother we insist.  Max is always here to help you should you need him.  He takes the phone and reminds her of this.  We talk for about an hour to catch up.  I had spoken to her a month ago and insisted that she just focus on herself and her retirement and that we would worry about ourselves.  She is too old to really be helpful and what is the point?  I do see her but only on occassion.... the grief my eldest sister has caused my family has damaged a lot of what we had initially when Mom first moved in.  I ask Mom about Dad..... I miss him more than words can express.  It was recommended to stay away due to the high incidences of illnesses on the nursing home floors at this time of the year.  I will see you soon Dad, promise.  I love you and miss you so much and I think somewhere in your soul, you already know that.  I miss our Corona nights and reading bedtime stories to you.... I miss holding your hand and laughing with you.... I just plain miss you. xoxo

I sent off an email to my other sister-in-law after getting off the phone with Debbie.... 

My daughter has another sleep-over...these are quite common these days and we don't mind.  Chemo week sucks for my children and they need to have their own distractions.  Lydia has taken to cooking and her friends are all for stuffing about a zillion chocolate chips into my pancakes this morning.... I have not had any sugar in my diet and my tongue sings with the sugary rush.  Yuck... oh well, I eat it up.  I used to love sugar and especially chocolate... now, I avoid it like the plague.  My oncologist has warned me off of sugar and says my cancer loves it.... good to know.  I try not to eat anything that converts quickly to sugar so I have reduced my breads and other carbohydrates.  I feel better and I have lost some weight.  The nurses don't like it when you lose weight... it is usually a bad sign unless there is good cause to warrent the loss.  Well, it looks like nap #7 is due.... with that....

Be good to yourselves and each other.  Remember to be kind and to show respect to others... you never know what their life journey is.....

Thursday, October 3, 2013

...... a tear filled day....

...... began with me feeling normal and ended with me sobbing myself to sleep in the spare room.

I wouldn't say necessarily that I feel sorry for myself but it is fair to say that I am hitting my limit.  I feel fortunate that I am in treatment and that it appears to be working well..... but I am terrified, truly scared for the first time in a really long time.  I will be doing a CT scan after my "final" treatment to see what the status of my cancer is.  My head refuses to shut off to let me sleep these days and the offering of a sleep aid that has addictive qualities has me saying no thanks.  So, here I am at 4:30 in the morning groggy but awake with a stomach that has begun the boil and roll with a threat of travelling upwards.  The burn from the throat subsides as I head downstairs to grab a quick bowl of cereal.  Not the best choice but a quick one.  My appetite will wane and ebb over the next few days.

My hearing is now unbelievable sharp and with the neighbour's dogs yapping in a constant high pitch in the early evening I slam my front door.  The dogs are brought in and I can see him shake his head.  Everyone living around him would like to shake his head..... including his next door neighbour Vickie, whom I ran into when I entered the cancer clinic at noon yesterday to get my chemo.  She is a slight but feisty woman.... today she has a face etched in worry.  Her 80 year old husband was taken to hospital a few weeks ago by ambulance.  He was unable to get up and walk and he had lost the ability to communicate.  He was diagnosed with a brain tumour which they operated on an he was scheduled to do radiation to dry up the tumour they had drained.  I give her a hug and head over to clinic 4 to sign it. I receive the next appointments and the infamous pager, which I toss into my purse and look for a chair.  It is busy and I find myself sitting outside of the pharmacy.  A couple sits next to me and they watch me  conducting business with my iPhone and then I raise it above my head to obtain a signal.  My back is to the railing that surrounds the second floor and is open to a skylight above and radiation on the floor below.  The man beside me warns me about dropping my phone..... I jokingly tell him i am taking a selfie of my head.  He grins and we talk about our hand-held electronics.... oh dear, there goes my no talking to strangers today!!!  I am a true geek and I will always take up a discussion on tech gear.

They are waiting for his wife's father to finish his chemo... apparently he has sported a beard for all the years of his adult life for the exception of a few years in between now.  His wife is friendly and candid about his dismay of keeping his hair but losing his beard.  I would love to lose my 'beard' I tell her and the giggles start.  When her husband is finished his chemo a few minutes later the family retrieves him from the suite and pass by me with an offered smile and best wishes.  I nod and return the kind gesture. My buzzer goes off just as I finish sending messages to my students.

I choose a chair near the windows and my tech heads off to get a blanket and my chemo cocktail.  She will have to find a vein for the needle and I know in the pit of my stomach that this will be a painful experience as I try to relax when she puts the heated gel packs on my arm.  I can only have needles puncture veins in my right arm to avoid edema in my left from occurring.  As i sit there I can see everyone else in the chemo suite and most notably, an elderly woman whose deeply bruised arms are as a result of many pokes to find a vein they can use.  OMG I want to cry and in minutes, I not only cry out but the agony in the form of a needle pushing into tough skin, has me sobbing.  The tears have caught me off guard and I can feel the tech struggling to push the needle in further to anchor the IV.  Her beautiful blue eyes are watering and she quietly apologizes.  'Oh honey, its OK, you had to do it and it will be OK'.  She has asked a support worker to grab me a kleenex box so I can wipe my tears, which have now soaked into my shirt.  This is only the second time I have reacted this way..... the first time happened 25 years ago when a specialized needle was inserted, so what's the chances of getting the 'one in a million' needle whose end had a lovely little burr on it??...... I will save the details of that one.  The first two units of chemo are injected through the use of syringes into the click interlock.  The prickles move up the arm and the warm rush into the chest begins.  The bag follows and it will give me a sinus stuffiness and headache a few hours later.  My appointment was for noon but now the clock registers 2:40 when the needle is removed and I am able to leave.  My wrist will throb and be painful for hours to come but in the big scheme of things, it is the least of my worries.

I get into my car to pull out of the parking lot and I begin to sob uncontrollably.... what an emotional day.  I need to get home and put my Neulasta needle into the fridge.  The Victory program called a few days ago to inform me that the final two needles had been ordered and would be shipped in for pick up.  Hard to believe that this life saving injectable protein is $2600 per needle.  It will jump start my immune system but not without a bit of discomfort in the small bones that produce the white blood cells.  They have generously covered it under compassionate grounds.  I am deeply grateful for their generosity and say as much on the phone when they called a few days ago.  I make it home with a wet face and a dejected feeling of woe..... a slump I rarely find myself in.... and one I clearly do not want to experience again.

...... death is rarely something I have entertained in my journeys but lately, I have seen so many stories that remind me how really lucky I am.  I am grateful for all the help I have received but scared that it will come back when chemo ends... apparently this is quite normal to feel this way.. In my first journey, I assumed that I would get better and just move on and away from cancer and never have to deal with it again.  I think we all like to believe or maybe we are all wired to think we are immortal.  It would explain so much of the stupidity I have witnessed lately of people just risking so much to get across a street!?  I am deeply sensitive this week and yes, I have an angel on my left shoulder.... three people yesterday told me so as they looked over at it..... I really needed to hear that and intuitive people seem to know what to say.  I am a firm believer of angels and that they truly look over us.  I have been following a baby Max on FB 'Pray for Baby Max'.  He is almost a year old and on the 27th of September, his 35 year old father passed away at home.  Max's Mom, who is an earth angel herself announced the death of her soul mate and was kind enough to let everyone know that a day after his passing, baby Max spoke the word 'Mamma' for the first time in months and pointed skyward.......she knows in her heart that her soul mate is now one of the angels looking over them in their time of need.  It's what will keep her strong in her weakest and saddest moments and what inspires me to believe that everything happens for a reason.

I think we all ask ourselves at pivotal moments in our lives why we are the way we are and why we are here at this moment in history.  What do we need to learn and what do we teach other in our life's journey?  I am here to be a teacher.... not just any teacher, but one who brings the experience of a life journey and blend those soft skills into the skills so necessary for our ever changing work force.  I am a path maker and quite unintentionally.  I started out shy and reserved but zany and fun-loving.... life would prove to temper little of that... my desire to seek out a laugh and have fun is my driving force through my darkest days.  I have a slightly furrowed brow for the constant thinking I do... it has been mistaken for an angry face..... I suppose if I walked around with a perpetual smile I would be less intimidating??  Those who have gotten to know me well don't see it that way.

I am looking forward to next week when I have a guest arrive to watch me teach.  I would love to hear a candid critique of what she thinks of my sometimes zany energetic style.  Yesterday was not so much but that could be the stress of chemo day.  I pray that the next is the last one I will ever have to do.  I pray that the rest of my life is spent doing things with my family and evolving in my vocation.  I look forward to seeing my friends Julia and Chris!!!!  I love you guys!!

This morning in the early hours as my husband rises to ready himself for work brings yet more tears.... I am reflecting back on my life, sorry for putting my family through this journey and deeply fearful that my bucket list will remain undone should things not work out the way we hope.  Learning to let go and move forward will be my challenge over the coming months to establish a new me and a new way of living my life... in the here and now and reigning in the fears and challenges yet to come.  It is frustrating and overwhelming at times to take waaay too much in and having to digest it all at once.  I have to learn to take baby steps.  I have to forgive myself for my weakest moments, those I feel are spent feeling sorry for myself and be brave.  The times when I just want to run away and hide will be the times I need to acknowledge the emotional pain and step back into living my life and learning to accept that I don't have to be strong for everyone all the time.  Thank you John for your kind words to day... you see what I try so hard to hide sometimes and I am deeply grateful for your support... you are a blessing in my life.  The men in my life know what the score is and that is good.... everyone else just thinks I am bullet proof... if only they knew.  Max knows that a lifetime ago, life was anything but charming and understands that I am a driven personality but with a sensitive soul and that is why we love each other.... we know what each is right to the core.

This blog is dedicated to Max and his Mommy who are on a difficult path right now.... I don't know you but I feel for you both.  I dedicate this blog to little Melody whose rare condition has her going from an energetic almost 3 year old to an infant in minutes.... she loses the ability to walk, talk and her motor functions are grossly challenged.  Her young Mom Sami is stronger every day and has dedicated her life to finding a cure for her toddler.  I dedicate this blog to everyone no matter what challenges you face in life.  To those who have recently lost a loved one, know that they are watching over you. xo