Sunday, November 6, 2022

Palb2 : Ashley’s Details info vs. Czech/Slovak Study



Palb2 Ashley with POG vs Czech/Slovak Study 


Ashley’s PALB2 from POG at BC Cancer Agency - Vancouver, BC


https://open.library.ubc.ca/media/download/pdf/24/1.0394119/4


https://www.nature.com/articles/s41436-020-0880-8.pdf


Ashley is Case 13 in links above. Top PDF doc pages 96, 103, 200


NM_024675.3(PALB2):c.2835- 282_3113+1377del

   PALB2 exons 9-10 pathogenic deletion (PVS1, PM2)

  moderate-penetrance breast cancer susceptibility

deletion of 3423 bp


16p12: 23,631,306 - 23,634,733 (DELLY)

16p12: 23,631,313 - 23,634,736 (Manta)



Potential: 16: 23621352-23623140 (GRCh38) GRCh38 UCSC 

16: 23632673-23634461 (GRCh37) GRCh37 UCSC


Mentioned from Invitae: 


https://www.ncbi.nlm.nih.gov/clinvar/variation/417514/?new_evidence=false#id_first


https://www.ncbi.nlm.nih.gov/clinvar/variation/652951/?new_evidence=false#id_first


December 8, 2021 

 

Dear Brian Shirts,

Further to the email I just sent that is below… 


This is what Color sent me when I asked in 2020 for ClinVar info… documented in 2016 submitted by Invitae:


https://www.ncbi.nlm.nih.gov/clinvar/variation/417514/?new_evidence=false#id_first


And then the one you shared on my Connect my Variant page which was input onto ClinVar in Feb 2020 as a case through Invitae: 


https://www.ncbi.nlm.nih.gov/clinvar/variation/652951/?new_evidence=false#id_first


I find it interesting that the base points affected are so much smaller when mine and the Prague journal documents it so much larger at 3423 and 3424bp. 


So why the heck would Invitae document this but not Color? It drives me nuts that my variant is not on there. 


Ash 

(Note: Ashley matched the Slovak but the ones listed below could be variants of this original mutation to others from what is listed above. Brian regards below and confirms the Prage/Czech version matches with Ashley/me) 


Hi Ashley,


Thanks for sending this. I will update the ConnectMyVariant page with the breakpoints. 

It took me a little digging, but as far as I can tell these are the same thing. It looks to me like the reason the breakpoints are listed different is that the Czech/Slovak paper lists a C>G change 2 bp after the deletion. I bet that the people working on your deletion included that base pair in the deletion. Usually one assumes that two changes so close together are part of the same large deletion and lists it as one event. There are alternative ways to list this, such as an indel with 3428 bp deleted and one or two inserted. Sometimes the sequence is not entirely clear due to read mapping issues, so researchers do the best that they can. So, I can’t with absolute certainty that these are the same thing without seeing the sequences from both papers, but all things considered it really looks like the same deletion with different people annotating it differently.

The interview went well. I will let you know when they tell me it is coming out. Thanks for the permission to tell your story. I think that it is a compelling story. Hopefully it will help us find your relatives and motivate others to follow your example in advocating for cancer prevention. I’ll continue to share your story in hopes that someone with your variant will come out of the woodwork.

Best regards,

Brian





VS





Czech/Slovak Study: 

https://databases.lovd.nl/shared/variants/0000080196#00015623 

c.2835-281_3113+1374del 

With help from Marc Tischkowitz 

Listed by three family in total. This is one.


https://cebp.aacrjournals.org/content/22/12/2323


p.A946_W1038del

A deletion comprising exons 9–10 (Fig. 2B) was identified in an HBC family (#1507) with three cases of breast cancer. With PCR primers located in introns 7 and 11 (Supplementary Table S1), an extra fragment of 6779 bp was amplified from the patient’s DNA but not from control DNA. The sequencing of this PCR product dem- onstrated a deletion of 3424 bp and a substitution of C to G at position the g.26372 of intron 10 (g.22947_26370del3424, 26372C>G). Breakpoints were located in a sequence containing 16 identical nucleotides within AluSx3 and AluSz6 repeats in intron 8 and 10, respectively. Although the deletion of exons 9–10 maintains the PALB2 reading frame, an elimination of the gene region coding for 93 amino acids (p.A946_W1038del) that interfere with WD- 40 domains essential for BRCA2 binding (residues 850– 1186; ref. 49) may be considered pathogenic. 



––––

CLICK Images for screenshots from Czech as well as POG/UBC of Ashley’s mutation from links listed above:










CLICK images From Czech/Slovak Study:








Palb2 : Ashley’s Original Exon 9 & 10 + More



 

IN APRIL 2018 Ashley found out she is PALB2+:  PALB2 hereditary genetic mutation exon 9 and 10 deleted. Through BC Cancer agency and Color dot com. Then cleaned further. Her Dad has it and it’s found in Prague with three related women as well. 99.9% related. Couldn’t find them. 


Brian Shirts updated and Confirmed. 


PALB2 exon 9 and 10 deleted + 

PALB2 c.2835-282_3113+1377del

Gene:     PALB2

Coding Change (c.) 

c.2835-282_3113+1377del


Protein Change (p.) 

p.Ala946_Trp1038del


ClinVar Name 

NC_000016.10:g.(?_23621352)_(23623140_?) del 


ClinVar Number 

652951


Variant Forum 

https://messageboard.facingourrisk.org/t/palb2-exon-9-10-del-r-2835-3113del-p-ala946-trp1038del/4626


Notes 

There is Czech/Slovak paper where the same mutation is listed with three women from the same family all DX with breast cancer, Granda, Mother, Grand-daughter.



Other Names

Exon 9-10 Deletion 


_____

Email: to confirm from website above

Brian Shirts, MD, PhD
Associate Professor, Department of Laboratory Medicine and Pathology
University of Washington
shirtsb@uw.edu


PALB2 c.2835-282_3113+1377del 


––––



OLD -October 2021 

coding change (c.)
c.2835-?_3113+?del
protein change (p.)
p.Ala946_Trp1038del
ClinVar Name
NC_000016.10:g.(?_23621352)_(23623140_?)del
ClinVarID
652951
Genomic Coordinates
16:?_23632673-23634461_? (GRCh37)                                                                                                                
Forum Url
https://messageboard.facingourrisk.org/t/palb2-exon-9-10-del-r-2835-3113del-p-ala946-trp1038del/4626    
Notes
There is Czech/Slovak paper where the same mutation is listed with three women from the same family all DX with breast cancer, Grandma, Mother, Grand-daughter.

Saturday, October 16, 2021

The last 4+ years: My MBC Unplanned Life



This blog name around kicking cancer like it was a soccer ball hasn’t landed for me since late 2012 and I just did not know how to change it. This last post was mainly shared on my personal Instagram  and Facebook on October 16, 2021. This will be the last story shared on this blog. If ever again more details in the rest of my life will be found on Instagram and Facebook.

——————

This is the most difficult post for me to share, but it is finally feeling like the time to voice where I have been at. I am letting go of the protective cloak that I have carried the last four years and three months. I have lived quite privately since July 2017 and now feel it’s time to share my story.

**It’s first very important for me to say this: I do not need or want advice or lessons in the form of spiritual-bypassing teachings and/or war analogies. Unless you’ve faced what I am facing first hand, I cannot handle toxic positivity, personal opinions or “at least” dismissive assaults. I can’t endure emotional labour and face unsolicited ableist and health-privileged judgements. This is also a very long posted story - so please peace out at any time if you need to. Trigger warnings: major loss/grief, mental health challenges and end of life reality.**

It’s been ten years since I first had breast cancer in my late twenties. And for the last four plus years I have been mostly private about living with stage 4 metastatic breast cancer. The stage 2b I had at 28 years old in 2012 never fully left and was discovered spread beyond my breast and armpit 5.5 years out from my early stage diagnosis. Breast cancer cells were found in my lungs and mediastinal lymph nodes in my chest on July 10, 2017. Then confirmed it was the same estrogen+ fed breast cancer via bronchoscopy biopsy on the day of my 34th birthday. I found out because I was supposed to ‘graduate’ from the BC Cancer Agency and the CT scan July 10 was going to give my husband Mike Boulton and I the go ahead to finally have kids. 

Everything I had wanted and planned for was suddenly taken. My life completely derailed. The Alive2thrive retreats I hosted stopped. The losses so massive, I fell completely apart. There was no comfort. No peace. No freedom. Only complete heartbreak. I became severely depressed, anxious and grief-stricken. I could only talk about my reality with close family & friends, which has since been my circle of support the last few years in a private group. I had many reasons not to openly share how horrible my life had taken a turn. I kept what I was facing quiet. I didn’t want to scare other early stage breast cancer friends, I didn’t want to listen to people say things like “you can beat this” “stay strong” “thoughts become things” and I didn’t want to hear random “cures” or know-it-all blame based opinions that I endured in 2012 as if cancer was my fault. But mostly I couldn’t handle sharing due to the pain and immense grief I was living, now no longer able to have kids and lucky if ever to be 40. 

For the first 6 months I lived in fantasy, imagining every morning that it was a bad dream. I pictured myself getting to re-do life. Wondering if after death I’d get to have all that I wanted. Bargaining with the creator. Overwhelmed by unfairness. Nothing made sense to me and living knowing the 5 year survival rate was low at 22% with MBC was terrifying. 

A lot has happened since MBC hit me in 2017. I finally learned WHY I developed cancer so young in 2012. My DNA was genetically sequenced and in 2018 we learned I carry an inherited PALB2 (Pal-bee-two) genetic mutation from my Dad’s side which increased my risk of developing breast cancer to 60%. The mutation was likely inherited from my Mamka’s side (my Slovak Grandma) since my very same unique mutation was found in a Slovak study and Mamka also had breast cancer. The generations above her also had a lot of cancer too. I dove into research trying to determine the lineage of where this gene error came from as everyone who carries a mutation has a 50% chance of passing it on to their children. Men who are PALB2+ have an increased risk of several cancers but the risk is still under 1%. Being a woman unfortunately resulted in me having cancer due to the loss of function of this tumour suppressing gene, having a benign fibroadenoma initially and the PALB2+ risk being high at 60%. What started out as a benign cyst found in late 2011 ended up as malignancy. There was nothing I could have done differently. My illness has been an event of really shitty inherited bad luck. I’ve wanted nothing more then to help prevent the same from others related to me. So far I am the only one female in my family with this known PALB2 mutation.

Shortly after my stage 4 MBC diagnosis I underwent radiation to the lymph nodes that were pressing against my trachea and esophagus and went from 128lb to 105lb because I couldn’t eat. I went back on induced menopause with Zoladex to shut off my ovaries since the cancer was fed by estrogen. And over the years did several alt therapies, had an amazing group of healing practitioners on top of standard of care cancer treatments including Ibrance, Letrozole, brutal Faslodex butt injections, Verzenio and Xeloda. I underwent three more bronchoscopy biopsies in which one of them I was awake due to Dexamethasone steroids. I still have had hair and other than eventual steroid weight gain over 9 months more recently, I have looked healthy. No one would know looking at me that I have stage 4 cancer. As traumatic and awful as it’s been, I still managed to have adventures, really good days and decent quality of life for the most part. All in the heaviest grief that never really fully leaves. 

The loss of being a Mother has been the hardest pain and one of the biggest reasons I could not share my diagnosis openly, because for me that meant sharing that my dream to watch my husband Mike as a Dad was gone. That my life felt that it didn't have meaning anymore if I was never to be a mother. I couldn’t talk about my cancer returning because it meant talking about all that has been robbed from us. 

But despite stage 4, we still tried. We had 10 embryos from 2012 that had been waiting for us. Mike wanted a piece of me. Our families in support of this, the first year of my MBC diagnosis we tried to bring one baby into the world. Other MBC women had done it. Other men who lost their wives did it too. If the embryos existed, why not try? After several surrogacy possibilities failed, we found a surrogate six years to the day that the embryos were created. We thought it was meant to be. 

In the midst of Surrogacy we found out about PALB2… which meant each embryo had a 50% chance of carrying my mutation. So we decided to do Pre-implantation Genetic Diagnosis (PGD) testing to identify which embryos carried my high risk cancer PALB2 gene. This involved thawing all of the embryos, growing them for three days and taking 1-2 cells from them to sequence the DNA. We raised all the money privately through family and friends to make all of the IVF/Surrogacy/PGD possible. But we then learned that only half of the embryos survived the thaw. Then three. Then one. 

On Solstice in 2018 we lost our last embryo. Not one survived. We then found out that it was due to an older freezing method in 2012. Slow freezing embryos increases the risk of them not surviving cryopreservation. My IVF clinic didn’t switch to fast freezing until later that year in 2012 into 2013. 

We lost everything. And Mike will eventually lose me too. Everything in my life now has felt like poor timing. Had we known about PALB2 (basically BRCA3, similar to what Angelina Jolie & Christina Applegate have) when I was in my twenties I could have had a prophylactic bilateral mastectomy and been followed up on more frequently like many other BRCA+ carriers do. But testing for PALB2 didn't start in Canada until 2016. I even asked BC Cancer Hereditary for more gene panel testing and was denied in 2016. They said I didn’t have enough family history of cancer to qualify. Had I been diagnosed earlier maybe the cancer wouldn’t have seeded itself elsewhere. Had I been diagnosed later, maybe our embryos would have been fast-frozen. The what ifs. The hindsights. The mindfucks. The unfairness of it all has felt like one big punishment. Even though I know that’s not how life works. Shitty circumstances happen and there is no ‘everything happens for a reason’ soul-based lesson or greater good picture to help make sense of any of it. I got the shit end of the stick. 

Overall I had somewhat stable scans the first three years with MBC. But last Summer I started having headaches while on Xeloda. I asked my oncologist for my head to be scanned twice but somehow this got missed in June and Sept 2020. The chest and abdominal CT showed that Xeloda failed with a new metastasis in my adrenal gland and the main lung tumor and previously radiated lymph nodes were growing again. It was time to focus on the PALB2 mutation with a targeted drug. I was then screened for a clinical trial of immunotherapy and Lynparza (PARP-inhibitor that targets BRCA/PALB2 plus 15 other homologous repair deficient cancers like mine) I would be the only one in Canada on this trial. But before I could start we suffered another huge hit during the trial screening. 

On October 5, 2020 we found out the cancer had spread to my brain (common in PALB2 stage 4 MBC). 8 lesions in various locations were then targeted through stereotactic radiation therapy (SRT or SRS). I wore the claustrophobic mask that pinned me to a table for five day sessions, turned manic for 3 months on Dexamethasone steroids to reduce brain swelling, gained 30lb of steroid weight and then had lung and lymph node radiation too. During this time I travelled back and forth to Vancouver on BC Ferries daily for nearly a month thanks to the help of Mike and my Mum. Poor Mike having to take a mental health leave of absence from work because the stress of it all impacted him so greatly. I also was thankfully able to participate in a healing ceremony through Callanish Society which helped me release and power up for the (at the time) scariest challenge of my life. 

By December 2020 I started the clinical trial and received stable and improved CT & MRI results every month until June 2021. Through this time I was on steroid Prednisone and dealt with serious mental health issues, pulled both ankle tendons and could barely walk as a result of muscle damage due to steroids and tried to pick myself back up after going through a really hard year as someone in the ‘clinically extremely vulnerable’ group in active cancer treatment during a global pandemic. 

COVID and stage 4 cancer combined during what are possibly the last years of my life has felt so painful. I am grateful for all who have taken COVID seriously in an effort to minimize the risks for people like me. While many parts of the world are re-opening, cancer patients are still having to take precautions. While several people feel their rights of freedom have been taken, I already deal with that having stage 4 breast cancer and unable to be with loved ones I wish I could spend time with. COVID has broken my heart with how much it has taken. Gone are my bucket lists. Gone are all the concerts I was supposed to attend in 2020. Gone was the art show I was supposed to display at the Gumboot Café. And gone is the sense of feeling fully safe as someone so high risk who could potentially not receive hospital care if cases are too high in our ICUs.

Beyond COVID concerns, June 21, 2021 brought me to a bigger mountain I had to face. It was determined that an area previously radiated in my brain was growing again. A spot in my left temporal lobe near the nerve that functions the jaw/chew/swallow etc. My CT and MRI showed that I was stable or improved everywhere else except this temporal lobe. My tumor markers in my lab-work were normal. Everywhere other cancerous lesions in my body were gone, smaller or stable except this one damn brain metastasis. Because of the location of this brain met and due to already having had SRT radiation near it and the risk of damaging my jaw nerve, I underwent major surgery of a craniotomy and left temporal lobe resection on Friday July 9, 2021. Right before that I clung to my happy place during a heat wave in Tofino celebrating my wedding anniversary with Mike, afraid that trip could be my last. 

Facing a brain surgery and recovery was the last thing I thought I’d be doing in my favourite season of the Summer. July 9 was the day before my four-year stage 4 MBC diagnosis day and two weeks before my 38th birthday. 

Unknowns of whether I would get to continue my clinical trial again (I did, 3 more times), whether all the tumor could be removed (It was at first), how I would recover (I was hospitalized over my 38th birthday sick with a drug reaction post op), wondering if this was my last Summer (Hoping not), were all uncertainties making me feel panicked and anxious. I didn’t know how it would go post operatively and the recovery was incredibly hard physically / mentally being back on steroids that made me manic again. My emotional exhaustion so intense, I’ve struggled day by day since.

My first MRI post-op craniotomy was Aug 15 and mixed, but promising. I had various opinions from different docs. Because of some synthetic dura thickening from the July 9 surgery another MRI was scheduled 6 weeks later (Sunday, Sept 26) But before I learned those results I was suddenly hit with another shocking episode that made life a wreck.

On Sept 29, 2021 I had a massive grand mal seizure at home. It started off with intrusive auras that I couldn’t describe, Mike phoned me while he was at work and knew he had to come home ASAP based on how little sense I made. I found myself completely losing my awareness. I blacked out and I went into a full body convulsion on a couch. I bit my cheek, chipped teeth and fractured my humerus bone dislocating my right shoulder. Thankfully my Mum was present for this traumatic event. I have no recollection of about 30 minutes of it. I shook so hard all while my Mum’s dog Tula licked my face and my Mum called 911. I spent two days at the hospital. My shoulder dislocation was fixed under anesthetic which made me vomit after. I received X-rays, CTs, terribly bruised IVs and was high on hydro-morphine and anticipating my last MRI results as I was cared for in the ER. The MRI news from my radiation oncologist the day of my seizure was not what we had hoped. The thick dura now larger, my oncologist shared that my neurologist confirmed that an area near my craniotomy was now cancerous again. So soon. Not even 12 weeks having passed since my brain surgery. It was this new cancer growth that caused my seizure.

Since this horrible MRI scan news and my seizure I have been on anti-epilepsy meds making me incredibly emotional and exhausted, I am in a sling and can’t use my right arm. I am told the healing of my shoulder will take 2-3 months and I fear what may happen within that time. Thankfully in the last 2 weeks I have not seizured again, but am told it could happen, maybe just not as hard as the first one. 

Since the MRI news and seizure episode I have made another claustrophobic face mask for brain radiation again. The second time one year later but not as high of a dose as SRT. My medical team presented my cancer case on Wednesday October 13, which also is known as metastatic breast cancer (MBC) awareness day. I eye roll at the day because every day has been stage 4 breast cancer day for me since July 2017. My radiation oncologist called after the conference regarding my case to confirm another 5 rounds of radiation on two spots near the previous surgical area would be the best course of action and to most likely begin Carboplatin chemo. A CT scan happened Oct 14th which will also determine the state of my adrenal, lung and lymph nodes. As it has been since August 2020, I live scan to scan month by month and it is A LOT to bear.

I don’t know what I will endure in the coming weeks. I don’t know whether my clinical trial will be taken from me, whether I will need a port for IV chemo or whether some other wild MBC sorcery will take place as I try to thrive through. I don’t know if I have less than six months to live, a year or whether miracles will occur. I hold hope for that always. Living through the unknowns of COVID and stage 4 MBC with an inherited PALB2 mutation and now facing so much uncertainty with new breast cancer in my brain growing feels like the heaviest burden to carry. My love of over 18 years Mike has been my rock. Together we are lucky to have been to our happy places, receive support from my Mum, family, friends, counsellors, cancer community Callanish Society and the Sunshine Coast Ruby Slipper Fund keeping us afloat. We are grateful for it all. 

I’ve shared several pieces of my world here in hopes that more people beyond my core support network can help by holding the vision that I will do well. That I will make it through what is to come, that I will maintain quality of life and that I will see good outcomes in the future. If you don’t know what to say, that’s OK… You can say that. If you’d like to offer prayers, good vibes, healing or support in creative ways etc… this is appreciated so much. Please just don’t use ‘battle language’ or ‘fighting’ terms or toxic positivity. The cancer itself is my own body’s confused cells that just didn’t know they were supposed to go through the self-destruct process of apoptosis. Again, some shit bad luck. It sucks and it’s OK to cry about it. I can still feel anger, unfairness and have ‘fuck cancer’ days with what has happened to me, but cancer really is just a series of errors in our cell’s biology and they know not what they do. There was nothing my thoughts could have done to prevent what has happened. There is no rhyme or reason to it all. Nothing a patient does wrong to walk this path. I continue to process the grief while loving myself through it the best I know how. Some days that has looked like jumping in the ocean with my love Mike, singing in the shower, grounding with the earth, being creative, laughing with loved ones and cuddling my Abber Cato and Tulakins pupper and other days that looks like tears, headaches, naps, worry and deep sadness. I feel every emotion that comes and appreciate all the people in my life who can be with me in whatever state I am in. The hard, wild, uncertainty in outcomes of beauty and tragedy. 

If you made it to the end of this very long update… Thank you for being here. I’m going to keep going, trying, doing my best living out this life as fully and determined as I can, loving my people with hopes to be here as long as possible. I don’t know how much more I will write publicly, if at all. But felt the weight of this reality needing to be lifted for months and finally needed to lighten the heaviness and share my story.

Much love and gratitude,

Ashley

Sunday, March 12, 2017

Lessons from the Lavender Farm




4,000 ft above sea level on a volcano I sought to feel calm above the lavender fields in the company of a giant Buddha. We had just had a sudden shake up of plans in our stay on Maui... resulting in some much needed peace and decompression. I'm gonna be vague with details on purpose and say that I'm still learning the act of letting go in lessons where things don't go as planned.

Tuesday, January 3, 2017

Five Years




Today it's been five years. Five years since it was confirmed that I had cancer. 

At that time the idea of reaching this date seemed pretty unlikely. I would spend hours researching the prognosis for young women with breast cancer and the majority of my late-night Google findings had tragic and frightening outcomes. More often than not I was pretty convinced that I wouldn't live beyond 2 years. 

But today is THEE day. My 5 year mark has arrived. 

I'm told that recurrence rates decrease a little bit beyond this point, though I know nobody truly knows. But to be here in this moment with no evidence of disease (as far as I know) feels like a miracle. I am thankful beyond words. Quite honestly, it feels like a dream that I've reached this point in survivorship. At times this milestone felt like it would never come. 2017 was once so far away! There was so much time for the shit to hit the fan! 

So I told myself that if I reached 5 years I would: 1. Be in Hawaii 2. Be cracking the bottle of wine that was bought the day I found the lump 3. Have a burning ceremony of all the booklets, pill boxes and papers related to my diagnosis. 

NOW: Hawaii is waiting for me in February. I don't really drink, so I'm not sure about the wine. And I do plan on cleansing the house of evidence that I was a cancer patient (minus all my patho reports of course). 

SO today feels pretty damn special to me. It's emotional. It's raw. I'm feeling part I've-Come-So-Far celebratory, part holy F*CK that just happened, and a small part still learning to live with the unknowns. I know nothing is guaranteed and 5 years doesn't mean 'cured'. But I feel a healing occurring in me daily. And even through the hard stuff, the loss, the reminders, the physical / emotional scars, I can say I am fairly at peace with where I'm at. 

Was cancer a gift? No. But it's been my teacher. It somehow managed to make my world feel both broken AND whole. It made me face my mortality - And it taught me how to live. It's been the worst thing - And it's also lead to the best things. 

❤️ Carrying a smile and an ever-grateful heart. ❤️ 

Monday, August 15, 2016

Summer of Loss



How's your Summer been? This is a question we get asked and I've been struggling with answering.

Saturday, March 12, 2016

In Which I Come out of Hiding and Share My Scare in March Story…



A year ago I was told that it appeared I had a spot on my liver. It was a phone call that shook me to my core. Thee call that I was always afraid of possibly having to face. The one every cancer survivor fears could come out of nowhere, changing our lives once again, forever.

Monday, July 21, 2014

And Then I Didn't Blog For 6 Months



Well hello there internet world of blogging! I'm still here!! But I have been lacking in the "write-out-your-feelings and life-story" department. And really, that is probably a good thing because I haven't exactly known how to formulate things these last few seasons. Hence my long silence.

Friday, January 31, 2014

Is This Real Life?



I recently had a scare. One of those fun "Is this a cancer recurrence?" nightmares. It actually went on for awhile which I think is why I find myself now wanting to write and reflect a bit on what happened and how I am coming out on the other side.

Friday, January 3, 2014

It's Been 2 Years, Happy New Year



Today is my 2 year cancerversary. 2 year ago today at exactly 1pm I was told I had a rapidly growing breast cancer. I was 28 years old and scared out of my mind… fearful of the unknown, of chemotherapy, losing my boob and thoughts of potentially dying young, I had every bit of innocence taken from me. 



Tuesday, December 31, 2013

Dear 2013 & A Note To 2014












Dear 2013,

Even though I was not in active treatment you were still a tough year:

Sunday, December 29, 2013

An October Post In December: After Cancer Anxiety & PTSD




I wrote this post back in October and never published it. 

I figure since we are coming up to the end of 2013 I would finally put it out there. 





October 2013…

I fell off the blogging band-wagon for a while. Almost two months to be exact. And there's a reason I haven't written since the middle of August. Mostly it is because the things going on in my life have been too challenging for me to want to share while I have been so IN IT. I was waiting for the storm to pass before I decided to hit the keyboard and write. There's something about being in a really tough space that makes me just want to run, hide, curl up with a cat and not blog. But partly why I haven't written in awhile is simply that I have really just had a lot going on. Some good, some overwhelming, some crazy... A lot of it still relating to the fact that I had cancer...

Sunday, November 24, 2013

How I Use Facebook to Talk About the Reality of Cancer





Been a bit busy to post this (or anything for that matter!) But wanted to share an article I wrote for Facebookstories.com and Huffington Post that published November 15

Hooray for my first Huff piece! Kinda cool.

And really neat to be contacted by an Editor at Facebook - Not something that happens everyday! Didn't even know they had editors!

Links for the article are below…

How I Use Facebook to Talk About the Reality of Cancer

- On Facebookstories.com
- On Huffington Post Impact



Sunday, October 13, 2013

More Than Pink



Please watch this video that a few of my cancer survivor friends and I put together. Thanks to all 33 friends in my cancer connection community for sharing such personal photos for this important project. Thank you Shellie Kendrick who put the guts of this together. xo






Pink is everywhere in today's world. But there is more to cancer awareness than just a pretty coloured ribbon. We are more than the products being pushed for 'the cure.' We are more than the sexualization of a disease that takes so many lives. We are more than silly FB status updates showing "support". We are more than just one month. We are more than just one color. It's time to push pass one cancer having the loudest voice. It's time ALL cancers be acknowledged equally. 

Please watch and share.

#realcancerawareness

Wednesday, August 14, 2013

Just When You Start Feeling Like You're Finding Normalcy




It happened again. Another horrible cancer related nightmare.

Wednesday, July 10, 2013

Time Flies When You're Not Doing Chemo



Last sesh : July 10, 2012



!
I'm hitting a lot of milestones these days. Buying our first home, hitting my first cancerversary, getting married, just did my 50th blog post recently, turning 30 in a few weeks... Today is another one of those 'big days' for me because it is exactly one year ago that I completed my final Taxol chemotherapy session. Yes, once again, I am choosing to note any major cancer anniversary date that has meaning for me. Who knew there would be so many of them? And who would have thought I would have been able to retain exact calendar dates in my head too! (Take that chemo brain!)

Friday, July 5, 2013

Best. Day. Ever.




P H O T O P H I L C R O



!
We did it! Last weekend on June 29, exactly one year a part from moving into our first home, Mike and I tied the knot! And our wedding was THEE BEST! ABSO-FREAKIN-LUTELY AMAZING! FLIPPIN' FANTASTIC! BEYOND AWESOME!

Thursday, June 27, 2013

A + M = Together, We Rule



!!! MUSHINESS ALERT !!!

Mikey & Me : circa 2006








:)
In every relationship there are challenges. You don't always see eye to eye, you might bicker about trivial things, have some pet peeves that may drive you crazy. Even the most solid couples have their issues... it could be a difference in parenting styles, the occasional communication break down, not getting enough down time together, a recurring argument about finances or maybe a certain particular one of you is a bad back-seat driver and has a tendency to be a bit bossy in downtown Vancouver traffic... (Who? ME? Never!)

Friday, May 31, 2013

Life Update: Part 2



Yet another post where I have procrastinated long enough! I have been wanting to write down my thoughts and do a recap... but also NOT wanting to do it at the same time. I do that often... struggle with wanting and not wanting to do something. It's kinda like weeding the garden... You don't want to do it, you need to do it, and you know starting is the hardest part. But when it's all done you feel soooo much better. And you can feel good that it's done. For me, keeping this blog has been kind of like a form of therapy. In telling my story and releasing some of what has happened in my life I get this great sense of relief afterwards. I can tell when I am need of writing too because I get really agitated and nothing I am doing makes me feel at ease. As soon as I sit down and start getting things down on paper, whether through journaling or, less privately here on the Internet, I soon see that this is what I have been needing to help me chill out. It's just that bit of release of "stuff" in my brain that is in need of purging - and then I'm good.

Thursday, May 16, 2013

A Little Detour



Ok. It is pretty much impossible for me to write a blog about my own reconstructive 'journey' without first touching on the somewhat controversial news of Angelina's BMX (BMX = that's super cool short-form breast cancer lingo for bilateral-mastectomy). I decided to hold off on my part 2 blog and make this its own post since the tone of this one is a bit more punchy than the story about my nipple recon, hence the 'detour' headline. I'm going to try and not ramble on about the Angie subject because I am actually really tired of hearing and reading about it. I shall explain why...

Tuesday, May 7, 2013

Life Update: Part 1



Whenever I go for a long period of time without writing I tend to avoid posting a blog. Not because I don't want to write... I have tons of things to say and share, but because there is just so much ground to cover, summarizing really quickly feels rushed and going into detail seems like a bunch of work.

A lot has happened in the last 4 weeks. And while I often day-dream about writing about recapping it, I also feel it is a bit overwhelming to go back. So I am thinking of dividing this up into a two-parter. I just decided that right now and I feel the weight lifting off of me.

So here goes.

Monday, April 15, 2013

There's Beauty In The Breakdown



My heart is heavy today. I am sad for all of my cancer buddies going through tough times. All of my brave friends recovering from or preparing for surgeries... My courageous cancer peeps waiting on test results... The ones in and out of the ER and those who are dealing with relapses. Everyone facing fears, loss and grief. I am sad for the girl I only was acquainted with through Facebook who passed away last week. Devastated for her family and all who knew her. Upset for all who are hurting and are in pain. Saddened by the senselessness that occurred in Boston today. (Seriously, world! Why!?)

Wednesday, April 3, 2013

First Chemo Anniversary & First Flu Since Cancer



Exactly one year ago today I was sitting in the chemo chair for the first time. It feels like yesterday that I was tasting the nastiness of the 'Red Devil' drug as it was being pumped into my veins. I remember it like it was last week. How terrified I was. The nausea before I even had my IV put in. The panic I had. My chemo nurse Allison giving me Ativan. The smells of the drugs and that room. My Mum looking shell-shocked. Mike, white as a sheet. Tanis trying to find things to keep me distracted. I remember so much and yet I have forgotten a ton of it too. Because a lot of it was like one big drugged up hazy hangover. But magnified and worse multiplied by a thousand.

Friday, March 29, 2013

Kicking Cancer Interview: Lauren Trigge



I met Lauren as I have connected with many other cancer buddies, through the powers of social media. Lauren and I had three things in common: Cancer being the obvious one. We both were very fortunate enough to do fertility preservation before chemo. And both of us are happily engaged to fantastic men who have stood by us during the chaos. (I think she will agree with me that it is nice to have something like planning a wedding as a distraction from everything cancer-related.) 

Please enjoy this wonderfully candid interview where Lauren shares the depths of what it is like for a young adult to have cancer. From emotions, side-effects of treatment to the different kinds of help she received ...and the new meanings she found for her life. Her inspiring outlook is nothing short of amazing.

Thursday, March 21, 2013

The Blame, Shame, Guilty Game



This post was originally titled "The Good, The Bad & The Guilty" but after reading it through I thought I'd jazz it up a bit with a good ol' rhyme. How cool and smart am I? :P

Monday, March 4, 2013

The Chillin Babes Can Stay Put







Just a quick post to say that the results for the BRCA gene came back NEGATIVE baby!

Friday, March 1, 2013

Kicking Cancer Interview: Ann Marie Otis



Since this is the first of its kind on my blog, I must issue a warning of graphic content in the following post. Nothing to be alarmed about, it's not violent or disturbing in nature - It's just the raw honest reality of one woman's post-mastectomy journey being shared. Anyone who has an issue with this may kindly access the X on the top of their browser, click it and this page will promptly disappear. 

Tuesday, February 19, 2013

And May The Odds Be Ever In Your Favour



Six months ago I had blood drawn to do a genetic test to determine if it was a gene that resulted in me getting breast cancer. The call came today that the results were in. And in typical Canadian medical system fashion – I have to wait to find out they are positive or negative.

Friday, February 15, 2013

Kicking Cancer Interview: Michelle Pammenter Young



It was roughly 12 years ago that I knew Michelle from my Squamish days working as a barista in Brackendale (when Bean Around The World was still Eagle Run Coffee Company). Michelle was a regular who often came in with her two small children. We didn't really 'know-know' each other but I knew her enough to say hi and, at the time, most likely remembered what type of drink she ordered. 

So when I heard that Michelle had been diagnosed with breast cancer this year I wondered if she'd remember me or not... Either way I had hoped to meet up and it wasn't long before we connected in Vancouver on a day when we both had appointments. Michelle was in the beginning of her chemo treatments and I at the tail end. 

Having cancer in common I often feel an instant friendship connection with people like Michelle... people who have had to face cancer, who know what it's like to feel truly awful and need the strength of family around them to keep them going.

Please enjoy this interview in which Michelle talks about priorities, support from family and friends, writing, sleep issues and how playing her favourite songs brighten her mood... 

Friday, February 8, 2013

Good Boob / Franken-Boob & My Post-Mastectomy Video



It's wild to think that it has been exactly one year since this post-op video was shot. I had just undergone the first surgery of my life: Left mastectomy with immediate reconstruction, axillary lymph node removal and a breast reduction on my right side (aka 'The good boob').

Monday, February 4, 2013

Winner Of The Space-Making Giveaway



A tiny little prayer was said. A hat was filled with names. My fiancé mixed the pieces of paper up in the hat. And a winner was chosen.

Wednesday, January 30, 2013

Kicking Cancer Interview: Vera Pereskokova



I had the pleasure of interviewing a fellow young breast cancer survivor last month. Reading Vera Pereskokova's Q & A definitely hit home for me obviously due to the nature and timing of her diagnosis. She also reminded me of an important fact that is often forgotten when it comes to breast cancer. And that is that MEN can get breast cancer too!

Read on to learn about her experiences from surgery, hair loss, to receiving support and making lifestyle changes... 

Friday, January 25, 2013

In My Local Newspaper & A Contest Giveaway



I have two exciting things to share.

Sunday, January 20, 2013

This Shit Is Getting Real



Like many people, before I go to bed at night I have a hard time quieting my mind. Only now the thoughts I have before I fall asleep are no longer the simple silly worries and ponderings that I would have in my pre-cancer days. At night I often have enough internal banter brewing that I could write a blog post in my head. But lately I have been so busy I just haven't had any time to write my thoughts down... which has actually been causing a bit of frustration because I have really felt like I need to get a bunch of stuff off my chest. (there is a twisted unintentional pun in that last sentence)

Monday, January 7, 2013

Kicking Cancer Interview: Kristy McDonnell



Today's post is the beginning of a new series on the ashley kicking cancer blog. I will be featuring some very special people I have met along this crazy year of cancer. Each person's story is unique and I feel it is important to share them. You never know whose experience may touch and help someone else.
First interview of the year is a Q & A with my amazing cancer buddy Kristy McDonnell... She's one tough chick with a beautiful spirit!

Thursday, January 3, 2013

The Cancerversary & A Throwback



Today marks a year since I was told I had breast cancer. I know, I know I said I was done with 2012... but I just started to look back at my photos for the first time since the big C entered my life. I couldn't help but gather a few pictures up to document what I was going through a year ago. And of course I couldn't NOT post about my cancer anniversary date. It is, after all, a day I will never forget.