ashley blair doyle

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

2022-11-06T20:03:00.010-08:00

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

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

2022-11-06T18:17:00.013-08:00

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.

https://connectmyvariant.org/variants/palb2-c2835-282-31131377del-652951/

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

Brian Shirts updated and Confirmed.

https://connectmyvariant.org/variants/palb2-c2835-282-31131377del-652951/

~~––––~~

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.~~

The last 4+ years: My MBC Unplanned Life

2021-10-16T15:37:00.131-07:00

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

Lessons from the Lavender Farm

2017-03-12T15:43:00.003-07:00

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.

As humans we tend to hold tightly to expectations. Some of us more than others. The solution: If we could loosen the grip a little on our attachment to things, events, people and experiences then we don't fall as hard into disappointment. That sounds all good and well, I know! Applying it daily can be a challenge... On a beautiful spec of earth in the middle of the Pacific, I faced this lesson again. Pressure had been put on paradise to provide a certain storyline. This had been my dream in celebrating my 5 years post-cancer aliveness! There was a lot of weight behind my vision for this trip.

It got me thinking about why humans choose travel for pleasure... in my case to celebrate a milestone... We go to other parts of the world to experience, see and do the new. New places, people, things. To escape. To explore. To immerse ourselves in other cultures. To learn. To feel a certain way. Adventure. Joy. Freedom. Sometimes we're on a quest for inner peace... a soul searching journey... a pilgrimage towards ultimate healing.

While beautiful places might be a haven for all of the above and more... we are still in our bodies. Nothing outside of ourselves can truly provide that which we seek.

And so I sat pondering this, a tad light-headed from the thin air... taking in the beautiful landscape below. Remembering all of the ways in which I had pictured this time away. Recalling the intention I had set for this celebratory adventure. I knew it all along but had been blinded by the importance I had placed on this point in my life. A gorgeous setting can act as a facilitator for feel-goods, but that freedom and that joy and that peace is already inside of us all.

You don't find it in sacred sites of the world or on tropical islands. You carry and bring it with you. ❤✨

More images from the #5YearCelebrationTrip can be viewed here

Five Years

2017-01-03T10:00:00.000-08:00

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. ❤️

Summer of Loss

2016-08-15T08:30:00.000-07:00

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

Summer is my favourite season, but truthfully it feels like it's only just started.

Solstice began with the sudden loss of my dear sweet Mamka (my grandmother). She was the heart of our family and so much more than a Grandparent to me. We shared a very special bond. A 15 year cancer survivor, Mamka gave me hope daily... and she lived cancer-free until her passing. She often told me how proud she was of me. I never got to tell her that the feeling was mutual and then some. She was my hero. To think that she is not alive today is something I am still trying to comprehend. How do you live in a world without someone who has been so much to you? These months without her have been so incredibly difficult to navigate. I've never faced this kind of grief before. The deep sadness, energy loss, numbness, the emotions that come in such intense waves and change on a whim, it's affected me in ways I never imagined. Despite feeling Mamka is with me in spirit, there is still this massive void. An empty space in my heart.  

Not two weeks after Mamka died my Auntie Rena passed. She was a big traveller who sent me postcards and letters my whole life. Auntie Rena's travel tales of exotic tours and cruises to far off places were a huge influence on me as a kid. I always admired her adventuring independent nature. She was one tough lady.

Then my first 'cancer buddy' passed away. Kristy was my lifeline support the first 2-3 years after cancer. We were diagnosed at the same time and despite having different cancers were a great source of encouragement for each other. I will forever remember Kristy for her caring kind heart, glowing spirit and the fierce love she had for her son. I am forever grateful for our short friendship (sadly under shit circumstances).

I know many others who have experienced immense loss during this season. Something in the stars? Whatever it may be, and though it hurts that they're gone, I know there are some pretty special angels looking out for us here on earth right now. ❤️

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

2016-03-12T10:12:00.000-08:00

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.

This 'spot' was believed to be 1 centimetre and was considered a 'new finding' since the radiologists at the local hospital said there was no mention of it on previous scans in my records. It could be a freckle (hemangioma) but it likely wasn't as "freckles on organs don't usually appear. They have always been there." my GP had said apologetically over the phone. "I'm sorry Ashley, but if it's not a freckle. It looks like the cancer is back."

I'd been really sick for a week… I thought it was maybe appendicitis, a stomach virus or worse (always impossible to not go "there"). But because it felt gut related I really didn't expect that an ultra sound would show something on my liver. Here I was being told by my doctor that it looked like the cancer was back. That whatever I had been worried about originally was now much more serious than just appendicitis or a stomach bug. It was a lesion on my liver. If it was a freckle it would have been there previously. And it wasn't on any other report prior to this. These facts were not in my favour. Things did not look good.

I called Mike immediately and he was soon on his way home. Coincidentally, my Dad was already heading over as he was bringing me soup since I had been home sick for days. As much as I was terrified, I was actually more angry than anything else initially. I was mad that after all of this... after everything I had been healing... that I was facing this shit again. Cancer that had spread to another organ was NOT something I was ready for. No one is. I paced, swore, yelled and cried as I tried to figure out next steps. My Dad, his wife and Mike, all in disbelief, tried to get me to sit down but I couldn't.

Things sounded pretty certain as far as outcome, but to confirm whether it was metastasis a CT scan was ordered. Unfortunately I was told I'd have to wait a few days. A FEW DAYS OF PURE TORTURE. I was having none of that, got on the phone and was at the hospital within a few hours. Put me to work, get me on the phone to push through, give me a task to make things happen and I'm there. As most people who have been through this cancer crap can probably relate, It's difficult to just sit and wait for medical news. My coping method is to keep busy or work towards a solution. I try my damn best to make things happen when it comes to tests so I can move forward, be put out of my misery and speed-up the horrifying fear of anxiety. Thankfully my perseverance paid off.

Shaking on the table of the CT machine it took three CT techs and a ER nurse to attempt to get a line going for the contrast dye.

"Don't worry. We will get your veins going soon." One of them said, clearly seeing my discomfort with adding more wait time to the scanning process. And another..."Are you afraid of needles? Don't worry. It's just a poke"

Through chattering lips, "I'm not afraid of needles. I'm afraid cancer is in my liver."

The CT crew was really understanding, kind and compassionate after I shared this. I was so afraid of what they would see in the scans. The fact that they couldn't get an IV going just added to my panic. I was shaking so hard they had to hold me still. I feared how they might know my fate before me once the CT was done. They would know. And their eyes might try to hide what they knew as they undid the straps holding my arms in place. That I would see their sadness for me. And I would know from their sympathetic glances that I was now living with mets.

Within an hour of finishing at the hospital, Shannon, my life-long best friend since kindergarten, arrived at our house to be with me while Mike went back to work. I still don't know why I felt it was important that he continue to work that day. Maybe to normalize the situation. Whatever the logic, Shannon was there for me as my support as we waited for the call from my oncologist who had said she would know that day what was going on. (Thank goodness for kick ass oncology teams and expedited answers!) To keep occupied we went for a walk. I paced on the beach and then again once we got home. I felt fragile and small. Like I was 5 or 6 years old. Helpless. Similar to how I felt when I went through chemo.

A million fears and scenarios of chemo, radiation, panic attacks and dying played out in my mind. I went as far as to discuss some pretty intense concepts and end of life wishes with Shan as she held space in the sheer terror I was experiencing. I kept thinking about popping Ativan, but wasn't sure whether I wanted the hangover feeling and blackout that usually goes along with it. I managed to resist the anti-anxiety meds, wanting to be fully alert for when the call would come in since I was anticipating having to process some pretty hefty information.

But the stress of the situation was exhausting me. Shannon and I agreed that maybe it was a good idea if I tried to nap. I had been shaking for hours and all of the adrenaline was making me sleepy. (It's interesting how our bodies react to stress in this way. I almost always need a nap when I am working through cancer-stress, after a scan, waiting for news. Makes sense. Fearing your life is some serious shit!)

In the bedroom, Shan held me like I was a little girl and let me cry in her arms. I flashed back to when we were 5 and she had comforted me on the steps outside of our kindergarten classroom when I was home-sick. I was the new kid at school and feeling nervous on my first day. I remember it so clearly to this day… Little Shannon had joined me on the stairs and given me a hug assuring me everything was OK and not to cry.

Now, 25+ years later, I couldn't have asked for a better best buddy to be there for me during this time.
"Shan, can you promise me one thing?"
"Sure Hun."
"Will you promise after I die, to still come visit Mike and check up on him for me?" I said holding back crying.
She stroked my hair like I was her child, nodding "Oh of course, my dear." I think we both may have had tears but I couldn't see her face all curled up like she was my Mum.

Then the phone rang.

We jumped upright and I swung my legs over the edge of the bed. This was it. I would either be planning for managing metastatic breast cancer for the rest of my life or I would be given yet another chance at life (If that makes sense). I took a huge breath before answering.

"Hello?"
Without wasting a minute with phone formalities my oncologist on the other end of the line...
"It's Sophie. You're fine."
"I'm fine!!??" Raising my voice through tears of relief!
"You're fine. It's not cancer."

IT'S NOT CANCER. I WAS FINE! I was better than fine! I had a hemangioma that WAS on a previous scan that the local hospital didn't have on file. My oncologist (Sophie) said that the 'spot' was 'over-called'. The CT and ultra sound clearly showed that it was not cancer. The radiologist pros at the BC Cancer Agency would have been able to determine this from the beginning, and the local medical folk were just being overly cautious because of my case (and age). Lesson learned: Rely only on the pros who see cancer daily.

Regardless of the dramatic roller-coaster that the local hospital had just put me through, I was suddenly on cloud fricking nine. Beaming and shaking all at once. I was in a state of relieved shock… processing the halt of fear and sudden relief of happiness was something I had dealt with before but not to this extent... watching Shannon scream and jump up and down for joy, I almost couldn't believe that everything was suddenly OK. It was like a dream.

Shannon galloped through the house screaming overjoyed as I relayed what Sophie had said and began calling Mike with the news. I could feel his breath-hold release with a deep sigh and had wished in that moment that he had been with me. I then texted a few people that had been in the know of what I had been dealing with for the past few days. Happy tears flowed hard and smiles were so big they hurt.

That week and this day one year ago was by far the most terrifying health scare I've had since finishing treatment for breast cancer. To think of how slim my chances were - that it didn't appear probable that it could be just a freckle... Things had not seemed in my favour at all. I thought "this was it". I went from receiving my worst fear to suddenly feeling like I could fly. The shift from fear to relief is unlike any other feeling. I felt like I was having an outer body experience all day and then was quickly thrown back into myself with the news that I was in the clear.

For days and weeks, even months after that mind-f*ck of an event I felt like I had to pinch myself over and over. I was not living a nightmare. I was OK. I now refer to that time as My Scare in March. Because, for me, it was the mother of all cancer scares. It was like another mile-marker for me in my story of having had cancer. Another re-birthing period since first hearing those words in 2012. A chance to reset once again... to know that I was free. I could do anything. How odd that in threat to life we are suddenly 'switched on' to give ourselves expanded permission to truly live. I'd already experienced a huge impact from the post-traumatic personal growth in my life since that original diagnosis, this was like a second-helping of it. Another sobering dose of 'this is the only life you get' front and centre.

A few weeks after the good news I actually learned that I did in fact have some kind of stomach sickness. I had Yersinia Enterocolitica. A type of bacterial infection similar to E-Coli. (gross!) It mimics appendicitis and makes you feel like something is attacking your abdomen. No wonder I had felt so awful.

So I wasn't crazy. The infection cleared on its own and my March Scare has now come up to one year later. Since then I've had a few more scans that have caused scanxiety but nothing like this one. Overall I'm pleased to say that I'm doing really well (despite the continued hormone-blocking therapy side effects.) I'm happy. Mike's happy. We're both healthy… living, learning and growing. I'm just loving this life. My mind is stronger, my soul nourished, my spirit free. My liver has a 1 cm freckle on it and I don't have cancer.

And Then I Didn't Blog For 6 Months

2014-07-21T06:00:00.000-07:00

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.

So, how are things?

Well, life is good. Then it's hard. Life is good again. Then it's difficult. Life is good. Then it's stressful. And then it's good again.

Sounds like everyday average human life, right? And in some ways it is. I do a lot of everyday average things these days. I run. I do yoga. I meditate. I eat well. I go to work. I clean house. I garden. I go camping. Have Netflix marathons. Pay bills. Sing in the shower. Cuddle my cats. Get together with family and friends. Read the occasional book. Find myself overwhelmingly busy at times but I generally have been adjusting to what life looks like now post-cancer. (For the most part.)

And so an average normal-ish evening will begin when Mike and I both get home from work.

"How was your day?"
Good, but both of us are tired.

"What should we do for dinner?"
Halibut tacos. We've got avocado and there's cilantro in the garden. Yum.

We will enjoy getting dinner prepped whilst listening to good music and discussing weekend plans. "Do we go camping again?" "Go on a hike?" "Drive up the Coast and go lake swimming?" ... Hmmm... "Laundry needs to be done." "Did you take the recycling to the depot yet?" "Thanks for getting the cat food today." "We really need to re-do our front deck." "And win a large sum of money to pay for it." We smile at the thought and then begin devouring our homemade feast.

Then a simple question: "How does your stomach feel today?"

This is not Mike asking if I feel "ill" but actually how bruised and sore do I feel. Because two days earlier I had The Harpoon (aka Zoladex) injected into my lower abdomen. The one that suppresses my ovaries and has put me back into a sudden induced menopause. The pellet that was injected 4 times during chemo as an insurance policy to protect my eggs. The one with the massive needle that even the nurses cringe at the sight of. The "Plan B" of on-going estrogen-suppressing treatment for breast cancer due to the fact that Tamoxifen was getting to be a little too difficult for me to manage. The 'drill bit' shot that causes dime-sized bruises, throbbing pain at the injection site for 2-3 days and a multitude of familiar and NEW! side effects. (yay me!)

It was injection numero 3 of 40-ish-something last week. Yes. 40-ish-something. I am supposed to do this shit for 3.5 more years to complete the five year standard of care for hormone-blocking therapy after ER+ breast cancer. Yep. Super great fun times.

And then our conversation takes a pretty big shift from there. Mike and I discuss my pain and my side-effects. The reactions that increase my anxiety and number of panic attacks since I stopped Tamoxifen. The headaches. The brain-fog. The moodiness. The increased fatigue. The hot flashes. Bladder function issues and other fun lady problems. The joint and bone pain. The benefits of continuing the drug (LIVING! LOWER RECURRENCE RATES! LONGER LIFE! HELLO!) but the long-term consequences of it too. Bone loss and the increase risk for heart disease. What about quality of life? What about the option of trying Tamoxifen again instead? But then there's the risk of endometrial cancer, blood clots and cataracts. And the joint-pain, anxiety and girly issues were no better on that. What about stopping it all completely? But then what if cancer returns? Then there's the secondary drug my oncologist recommends we introduce in addition to this current regimen.

Oye yoi yoi.

And of course there is having to wait so long for kids (if we are blessed with that being an option) >>> Not surprising news flash: I'm a little baby crazy lately! As one might be at my age... I could do a full post on this subject alone... Sweet little babes and kidlettes make me want to gush and cry simultaneously. Radiant pregnant mamas seem to be at every corner! People that don't know our situation ask if we have children and reassure me "it will happen soon" when I say that we don't. Others are not even aware that I'm still being treated assume we must be trying. So-and-so is pregnant with her third. And babies are everywhere! Do we really want to be 35 and 39 having our first baby? It feels like such a long time to wait! What if it's too late? What if this. What if that.

Mike and I are now equally dismayed and our lovely dinner turned serious convo has led us to a place that we reach periodically ever since the cancer shit hit the fan.

Why couldn't we have had a normal life like everyone else and just be doing this au natural sans IVF and sans the worry of needing to block-estrogen and sans fear of putting my life at risk? Without cancer having dictated when we could start a family. Without oncologists, follow-ups, ultra-sounds, mammograms, menopause, crappy side-effects and monthly reminders that I am still doing treatment when I get this blasted injection. Without breast cancer having disrupted our lives. Poor Mike having to put up with this stuff. Sometimes there is guilt about the fact that he didn't just end up with a 'normal' girl. (Apparently a common theme among us young ladies with amazingly devoted men.)

By the time we finish dinner we are both a little more than exhausted. Talking about this IS exhausting. Cancer, during and after, is exhausting. Living this is exhausting. Heck, hearing about it is exhausting. I try not to whine and complain too much but this is our reality and cancer really sucks. This is what we are going through, dealing with and living each day. Life after cancer. A second chance to which I am grateful for when I wake up each morning.

I celebrate turning 31 today and am thankful for another year. (Although it really does feel like I should be celebrating 29 today since it does feel like I lost 2 years)

But despite the set-backs and "stolen" time from cancer, I am proud of how far I have come and how I choose to live life ever since. I challenge myself. Make bucket-lists. Live as fully as I can. Dream. Plan. Do regular everyday type stuff. Fall apart some days and pick myself up and move forward others. Adjusting to what life now looks like for Mike and I... Harpoons, appointments and side-effects included. Trying hard not to dwell on the past, living in the moments that feel good and looking forward to days when cancer, follow-ups and treatments are just that much further behind us.

Cancer does suck. But this life is good.

Is This Real Life?

2014-01-31T17:33:00.000-08:00

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.

It began in the beginning of December. Shortly after getting some further reconstruction work done to the foob I noticed some lumpy bits in my chest above the implant where I had previously had fat injected (to fill in the caved-in area due to the mastectomy). My plastic surgeon assured me that she felt the lumps were actually the fat doing what she called "pearling"... Since the caved in area seems to be back to being caved in again it appears the fat has been either absorbed into my body or it has formed lumps.

Lovely.

Not really.

One area was particularly hard/solid and I was convinced it was getting bigger. Shortly before Christmas I saw my general surgeon who agreed that double checking this lump with an ultra sound and possible biopsy would be smart.

Queue the anxiety.

Not only was I worried that this thing was cancer again... I was dealing with the fears at the same bloody time as I did the first time I was diagnosed 2 years ago. Another Holiday season spent in fear. Another New Year where I worried what the future would hold.

The part that drove me nuts was that due to the season I was told I might have to wait until February for my ultra sound/biopsy date. Luckily some strings were pulled and I was able to get in mid January. But holy hell was the wait excruciating.

Living in limbo has got to be one of the hardest things. On one hand my fact-checking mind was assuring me it wasn't cancer by pointing out the fat injecting procedure. The logic was clear and simple. It just wasn't cancer.

But then what if it was? My 'past experience' mind would check in: "Last time you had a lump it was cancer. Last time you had hope that it wasn't a tumour and it was. This time it could blindside you."

So there I was... for roughly 40 days... back and forth... "It can't be. But what if it is? It isn't cancer. But what if it really is?"

More ruminating worries: "Well, what kind of year are you facing? What will 2014 hold? Will I be going through treatment again? Will I need surgery? What if it's already spread? What if I am already living with metastatic disease and we just don't know it yet?"

The tormenting daily thoughts... the fears. The not knowing.

And then there was what I did know. I knew that if it was cancer that I would be facing things like chemo and surgery. I would feel sick to my stomach at the thought of the drugs and what they would do to my body and my mind. I knew that if I had to do it all over again that I would sincerely be considering turning down chemotherapy. The unknown of whether this was a tumour or not was scary... but what I did know scared me more. I now know what treatment does to me. I know what the process is now. I know what they would be looking for and why certain tests would be ordered and I know that it would bring up the most terrifying thoughts if I had to endure this again. To the point where I wondered if I could even handle hearing bad news.

I imagined myself fainting if I heard the C word again. I would want to be tranquilized, put to sleep until the bad dream was over. Only I know it wouldn't be over. I'd wake up and still have to go through it all. And I worried my mental state would not be able to handle this.

Shoot me and put me out of my misery. Drug me to the point of not feeling. I can't be in my own skin. If I could run from physical body, I would.

But I didn't have to...

While I lay on the bed in the cancer agency ultra sound room, drugged up on Ativan, Mike at my side, I held my breath as I looked at the screen which showed the black blob that was my lump. Maybe it was the Ativan, but I felt a deep knowing as I looked at it. I knew it was not cancer. Not long after that the tech confirmed that he didn't believe it looked bad and soon the radiologist came in to confirm whether a biopsy would be necessary. And it wasn't.

"Post-operative cystic debris" is what she called it. And when I told her fat had been injected there, she said this was likely what it was. "I've seen a lot of tumours here. And that is not a tumour."

Praise. The. Lord.

So yay. Good news. It's not cancer. It will be monitored in 4 months. And now I can breath a sigh of relief and chill. Until the next scan, exam, lump, persistent pain etc...

We know it doesn't end there.

Until then though I am discovering how different it feels to have gone from approximately 40 days of straight anxiety and panic to relief and not worrying. It is weird feeling to have sudden relief. A dark cloud dissipates. A weight lifted. And I continue on this wild ride and beautiful life. Whatever it may throw.

It's Been 2 Years, Happy New Year

2014-01-03T13:00:00.000-08:00

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.   

2 years later cancer is still so much a part of my life. There are many things I haven't been able to control throughout this experience. And that is one of the hardest things to accept I think.  

So on this bittersweet day I have chosen not to dwell on what January 3 has meant and I am trying to push fears aside. Instead of sadness, I started my day off with a 4K run (first run in over a month because of my last foob procedure). The freedom I felt and sense of control I was given when I hit the pavement is like the best natural anti-anxiety medication I could ask for.  

Today, instead of fear and lack of control, I am choosing to feel free.

Dear 2013 & A Note To 2014

2013-12-31T17:56:00.001-08:00

Dear 2013,

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

Reconstructive surgery. Tamoxifen side-effects. Chemobrain. Multiple tests and scans. Wicked anxiety. Lack of income. Bad reaction to drugs. More reconstruction. Foob healing set-backs. The loss of some amazing cancer buddies. Some majorly difficult changes I won't elaborate on. The emotional and mental recovery I didn't see coming after cancer.

That was some hard sh!t 2013!

But you were also an awesome year:

Getting the Ruby Slipper Cancer Support Groups started on the Coast. I am BRCA negative and do not carry the breast cancer gene mutation. Mike and I tied the knot and had the most beautiful little wedding. Clean scans. Celebrated my 30th Birthday in Tofino. I was introduced to Young Adult Cancer Canada and attending an amazing retreat in Lake Louise. Met so many new friends. Awarded a grant from Cuck Fancer to help the financial burden that comes with cancer. Had something I wrote posted on Huffington Post & Facebook Stories. Started running again and doing daily yoga. Upgraded our vehicle without going into more debt. Helped my friend Kate set up her Shave for the Brave event where she raised over $6,200 for YACC. And I am able to say I made it through the entire year without having cancer in my body (at least not knowingly!).

As amazing as that bottom part is... 2014 I have some requests:

Please continue to go easy on us. On everyone struggling, coping, dealing and having a rough time. We could use a year where more happy things happen. Less of the hard stuff. More of the good.

In conclusion:

2014, please just be awesome.

With gratitude,

– Ashley

An October Post In December: After Cancer Anxiety & PTSD

2013-12-29T14:05:00.000-08:00

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...

And so, the never dull "journey" continues... (side note: starting to really hate that journey word!) (And second side-note confession: I also was avoiding writing because I have had to hold back ranting about October's pink-washing/pink-nausea BS that is up in our face this month for breast cancer 'awareness')

Anyways... bringing things back to the middle of August... I was struggling majorly with anxiety and panic attacks like mad. So badly that I finally caved and entertained drugs. Something I was always so against and never wanted to ever have to turn to. But at the recommendation of a councillor at the cancer agency, my rads oncologist and my GP I tried Celexa, which is an anti-depressant. I was warned that the first few weeks could actually possibly stir up more anxiety and therefore was also prescribed an anti-anxiety medication that is stronger and longer lasting than Ativan. I went into it thinking "how bad could this anxiety be? This drug is gonna work for me."

However, the good ol' Universe had different plans for me.

Quick conclusion: I don't "do" drugs well.

By day 12 of Celexa I encountered thee most intense panics I have ever had in the history of my cancer experience and 30 years of life. I was an absolute basket case. Afraid of life. Afraid of death. Afraid of just BEING.

I stopped the drug immediately but unfortunately had to endure 5-6 days of feeling paranoid, nauseous, anxiety-stricken and generally just freaked out of my bloody mind. I was so messed up that I actually thought about having Mike commit me to the psych ward. And the very thought of that terrified me but I didn't know quite how to get through it. Having never been on drugs like that before and having had a bad reaction to them, I can honestly understand how some anti-depressant drugs make some people crazy enough to kill themselves. (TO BE CLEAR: THIS WAS NOT MY EXPERIENCE! But holy hannah do I get how NOT yourself you can be on meds like that. I fully see how it can cause people to harm themselves.)

Pretty much this Celexa situation was really not cool.

Not only was I out of commission for a good week... but we had to cancel our yearly family picnic that we host every year. It was so disappointing. All because I was losing my shit. I couldn't even stand the idea of having to talk to someone when the phone rang. I was afraid to speak to anyone other than Mike. I had never felt this messed up. It frightened me beyond belief and since then I have developed somewhat of a panic disorder where I am now scared of WHEN my next attack will happen. This probably is a result of the totally random attacks I had when we went to Moncton too. Either way, you know you have issues when you start having anxiety about anxiety.

And random episodes have come... although today I am a lot better, I profess that I am like a nervous puppy who can't be left alone at times... I fear travelling alone, the ferry, taking the bus to appointments, being alone the day before an appointment, dealing with my cat having to go to the vet. These have not been easy times. Not for me and not for Mike either. Poor guy is always talking me down from SOME kind of near panic ordeal. I wish it could just stop... and thankfully there are days where I do feel strong and can convince myself out of "it"... The tricky thing is that I find mornings are the hardest. So I really have to get going and distract my mind first thing because it constantly is scanning, checking, looking for signs of danger or threat.

And the fact that I am always dealing with some kind of ache or pain really doesn't help this. Everything is still cancer. Even when I know it's not. If it persists I worry, wonder and think about the scans I may need if it doesn't go away in a few weeks. The thought of an MRI still causes me to feel sick to my stomach. And I hate it. I hate the after-math. Who knew that post-treatment life could be even more of a mind-f*ck than during the first year (not including chemo of course!)

But the good news is I am seeing people about this and I am getting tools to cope. Hooray for therapy! I am also getting some work done called EMDR which treats PTSD. If you have anxiety or suffer from PTSD google it - It is apparently highly effective. (As I write this I am only a few weeks out from trying it myself so it's hard to tell if it has helped yet)

So yes, this panic stuff is still pretty fresh. I am working through it each day and finding ways to deal and talk myself out of losing it. I may still carry Ativan and rescue remedy with me everywhere I go, but I am fricking well determined not to let the results of having had cancer rule my life.

To an outsider or to someone having not gone through a life-threatening illness, all of this may sound a bit nuts. Some people have little patience, compassion or understanding for this... and while this doesn't surprise me, it does suck. Because it's real and it's my reality. I am hyper-aware, hyper-vigilant and hyper-scared-of-cancer-returning. It can be a little over-bearing for someone who has never had to face cancer. But the fact of the matter is that 2/3 of people who have had cancer actually end up with some kind of PTSD and anxiety as a result of all of the crap we go through. And the numbers are higher in young adults... meaning, it is more common for people under 40 to be this way after the big mother-f-ing C. Which makes me feel less crazy/alone/isolated. Not that I want others to be going through similar stuff... but it does make me feel a bit better knowing I am not the only one.

Having a lot going on is a nice distraction from the anxious mind. Unfortunately the last few months have been appointment-heavy so those are obviously not the good type of distraction, they just add to the stress... But other good things are happening... I run 3 times a week, spin other days, do yoga almost every day, I'm busy with therapeutic projects and I started going back to work on a gradual basis at the beginning of October. How nice is it to focus on things that have nothing to do with cancer! It is so refreshing to have that kind of shift in the mind where I can look back on my day and realize that for X amount of hours I didn't think about cancer.

"New Normal Reintrajectorizing Life" goes on... each day different, some a struggle, some a little bit easier... one step forward, two steps back even. What matters I think is that I am trying. I am doing my absolute best and can only hope that with time things will get easier.

How I Use Facebook to Talk About the Reality of Cancer

2013-11-24T16:42:00.000-08:00

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

More Than Pink

2013-10-13T11:50:00.000-07:00

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

Just When You Start Feeling Like You're Finding Normalcy

2013-08-14T11:49:00.000-07:00

It happened again. Another horrible cancer related nightmare.

They wake me up at 4am and I lie petrified and unable to fall back asleep for fear of the dream continuing. They put the most horrifying pictures in my mind and the possibility of it coming true is a thought that lingers for days after. They haunt me and threaten to ruin my entire day with a consuming fear that causes anxiety, nausea and the most terrifying thoughts. I loath them. They make me afraid to fall asleep. And the realness of them is something I just can't seem to shake off.

Unfortunately my anxiety has been through the roof even before last night's cancer dream. Probably why I am having these nightmares in the first place.

I recently flew across the country for my older brother's wedding in New Brunswick. It was a very special time with family and I was happy to finally meet my two nephews and my brother's lovely wife. But the flights getting there were a bit of a struggle for me. I required a compression sleeve on my arm to prevent lymphedema from occurring (due to my 12 node axillary removal) and something about having that tight material on my arm caused an unexpected claustrophobic episode.

Queue panic attack. Bring in the Ativan.

I sleep off the anxiety for the majority of the first flight. I then feel the Ativan induced haze for the rest of the evening, into the night and even the next day.

I am not myself. I am out of it. I feel jet lagged and Ativan-hungover. I feel tired and foggy. I feel silly that I needed to take that pill. That I gave in and relied on it. That I wasn't strong enough to work through the panic and calm myself down on my own. I needed a drug.

And then I needed it again.

Randomly without warning I had yet another panic attack the morning of my brother's wedding. I wasn't feeling well when I first woke up and felt similar to how I feel after surgery. The hot sweats, the ringing ears, the shaking, the nausea, all that shitty stuff that I dread and fear. I fear it because I end up losing complete control of what my body is doing. And there is no turning back or convincing me that I am OK. And I don't know how long it will last and that thought scares me. A series of crazy out of left field thoughts then take over causing a hated anxious cycle. I require, once again, another Ativan to chill me out. And I sleep it off and thankfully made it to the wedding celebrations.

I thought I was passed this. I thought I was doing pretty good and learning to move through this life after cancer better than this. And here I was needing to take anti-anxiety meds twice in three days. This level of panic hasn't happened since surgery in April. I don't usually get that freaky before-fainting feeling unless I have just had an operation. Why suddenly was it happening now?

The unpredictability of these moments have me really nervous. Will this happen at my next mammogram in September? Will this happen when I am alone? When Mike isn't around? On the ferry? On a bus? At my desk at work when I return? When there isn't a cold cloth to throw on my neck for a bit of relief? When no one else is around to help me feel even the slightest bit soothed?

And then the nightmares. They add to my worries. They remind me that cancer is very much still a part of my life. As do these anxiety attacks. Because they never happened before. I never lost it like this before cancer. I didn't have to worry about panic attacks before. I didn't have to worry about recurrences. Or what it would be like to die from this disease. What it would feel like to know that there might not be another OK moment. No reprieve. No back to normal.

Not that I think about these ideas on a daily basis. Don't get me wrong... I was actually doing fairly well before all this anxiety stuff kicked up again last week. But it is this serious heavy shit that definitely rears its ugly head here and there that seems to put a bit of a dark cloud over me for a few days.

And that is what is so frustrating about this whole thing. Just when I thought I was doing better and moving forward through this cancer bull... I get slapped down again. It feels like a set back to me. A disappointment. A defeat. Like I am allowing the entire traumatic experience to rule over me.

It also doesn't help that the vertigo I had in the Spring is now back again. Not sure why that is happening but it keeps me from doing things that I love... like yoga and laying in the hammock. Another frustration to add to my pile of post-cancer 'gifts'.

Maybe this is just part of the process of healing though. Maybe this is all cancer-normal. Perhaps these are just residual effects from having to go through such an experience.

I know I am not entirely alone in this. And that at least makes me feel somewhat comforted.

Time Flies When You're Not Doing Chemo

2013-07-10T05:00:00.000-07:00

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!)

Really, I can't believe a whole year has gone by. It feels like yesterday that I was getting flowers from my chemo nurses and marching out that door all semi-proud, confused and high. As I think back to it, I recall that last treatment not being a good day actually... Not that any chemo day is good... but there were definitely better and more comfortable ones than my last one.

First off, my regular attending physician was on holiday, as was my favourite chemo nurse who never had issues with starting my IV and could always tell when I needed an Ativan. For some reason these two ladies had become my human security blankets during treatment. So you can probably guess that having them gone on my final infusion made me a little sad and a tad more anxious than normal.

Not only were my two 'regulars' not there, I had a really ignorant doctor 'subbing' in who talked about my 'rare' case to an intern as if I wasn't even in the same room. He spoke about my diagnosis as if it was a death sentence and I remember an intense panic taking over as I received my pre-meds. Ahhh yes... those fun pre-meds... To make things even more crappy, the nurses who started my line also had troubles due to my collapsed veins and ended up having to poke me 3 times and much to my dissatisfaction, finally had to settle with the inside of my wrist. (hurt like a biiiiiaaaatch!)

Chillin' in the 'big girl' chair.

And finally, the last bit of let-down was that no one else was getting treatment that day. Nobody. Just little ol' me. I was all alone whereas I would normally have 3 to 5 familiar chemo friends to chat with for added company.

Yep - It was my last day, the day we had been waiting for... where people cheer for you and you anticipate some kind of celebratory send-off.

And there I was... solo-ing it.

This was not how my usual chemos rolled. And other than getting to do the final drip countdown at the very end - it was truly awful. As was the entire four and a half month experience of course. But this day took the cake for being worst chemo day ever. How sad I was that it just happened to be the last one that had to be so shitty.

Stoned Chemo Graduate.

I know at the time it was a bittersweet feeling being told I was done. I definitely felt the safety-net pulled out from under me and have quite honestly struggled with a mixed bag of emotions ever since. I can remember feeling so lost that week after it was all over. I felt like I was being set free from jail but couldn't leave my cell.

Getting through the strange unexpected emotions of completion has not been easy and I learn more and more about navigating through 'survivorship' each day.

Looking back at the last year as I have recovered from both chemo and radiation I know I am a changed person in more ways than one. Each month I would gain a little bit more physical strength but I would feel discouraged quite often at the slowness of my progress. Although I would like to say I am now back to the way I was strength-wise before treatment it is hard to tell if I am. Some days I feel like I have several hours of energy and others I am frustrated that I can't keep up or do more in my day. And when it comes to big events like our wedding day I really feel it. I didn't even get drunk and I felt totally bagged and excitement-hungover for 3 days after the weekend!

Even Monday morning as I walked to the post office, down to the beach and back home again I felt exhausted. What used to feel like a simple light and easy walk now feels more like a tiring trek. Maybe it's the Tamoxifen. Maybe it's the combination of all of the treatments. Maybe I have been over-doing it. Or maybe I have just not conditioned myself enough. Either way, it drives me nuts and I seriously wish for my early 20-something pre-cancer body.

If someone had told me that one year post-chemo I would still feel ancient getting up in the morning or standing up after sitting for a long period of time... Or if I had been warned that chemo brain would linger and I would be struggling with spelling the simplest of words a year later - I would have bawled. Actually, I still feel like crying about it. It bloody well sucks!

But one thing is for sure, I am just so happy to be passed that mind-f%$# of a time in my life that was chemotherapy. That shit ain't fun and I hope to hell it is the last and ONLY time I ever have to go through it.

AMEN.

Best. Day. Ever.

2013-07-05T23:03:00.001-07:00

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!

We had been thinking positively for sun and getting lots of prayers for good weather and we totally got it. The entire event went so perfectly that I often can't believe that the day was even real. Seriously pinch me!

Being a very small wedding, we had a ton of help from family and our bridesbabes and groomsdudes. Everyone pitched in to get all of the props and wedding decor set up, bouquets made, pre-wedding food prepared etc. Although the decoration list and OCD agenda I had typed up was a bit intimidating everyone pulled together with enthusiasm to get everything accomplished and Mike and I were just so thankful.

I had a bit of an artistic vision for this special day... something along the lines of a Cute Romantic Summery Woodsy Handmade Wedding. Thanks to Pinterest, I think every 'pinning' bride has higher than average expectations of how their wedding should look. I was no exception! And let me tell you, the end result was even more beautiful than I had imagined. A HUGE thank you to everyone involved in making this day possible for us. We couldn't have done it without your hard work and love.

Some wedding details?

The ceremony was located in this beautiful little outdoor chapel at Camp Douglas in Roberts Creek. It was in the cutest forest off the beach that Mike and I stumbled upon during a walk back in February (back when our plan was to elope in May). But this little piece of heaven caught our attention and we knew we had to get hitched at this location.

As for that hand-made look I had envisioned - I made all of the decorations over the course of two months and had spent many days curating the 'look' I was going for. If we were going to do this, we were gonna do it right! hehe :) And I must add, as much as planning a wedding is stressful and not super enjoyable, I really did love making all of the little touches that made our day so gorgeous.

Walking up the aisle I was so nervous... not to marry Mikey but just to be in front of everyone saying vows and trying not to cry out of happiness or fumble on words. I knew that if I started to cry I might not stop so I had some back up tissue just in case!

But as soon as I was across from Mike I couldn't wipe the silly happy grin off my face and I was passed the point of shedding happy tears. He looked so fricking handsome and we both just smiled so big at each other in between saying our vows. Repeating the words after the marriage commissioner went by like a breeze and before we knew it we were pronounced husband and wife.

The whole ceremony felt surreal - in a good way! It was seriously like a dream.

We were also so fortunate to have my good friend Phil as our photographer and he sure made capturing special moments memorable and entertaining. Everyone was getting into the group shots and it was just so fun to see people let loose and have a good time. Even if having their photo taken and 'snugglin' in close was not their thing! :)

The reception was held in classic Creeker style at the Gumboot Café where our fabulous friends and family had helped decorate prior to our arrival. The place looked so gorgeous when Mike and I finally walked in. I could have cried it looked so good! :)

The night was filled with lots of laughs, great food, entertaining stories, photo booth fun and loads of dancing. We sincerely could not have asked for a better day. It was perfect.

Now if only I could somehow relive it over and over whenever I wanted to!

Dear life: Can I get a rewind button!?

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

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The day was so good that by the time we got to our B&B Mike was in a total state of disbelief at how awesome everything had been. He couldn't stop raving about it and we both felt so on top of cloud 9 that we wondered if the day had actually happened. We also had some great compliments from our friends and family who said that it had been the best wedding they had been to, which made us beam even more. We were just so thrilled that a good time was had and that it went so swimmingly.

At the end of the night somewhere between 1:30 and 2:30 am while gazing up at the stars from our B&B's hot tub I felt so thankful. I felt so happy to have married my best friend. I felt so much love for Mike and everyone that had been a part of our day. I was overcome with joy and was welling up with those happy/teary emotions for the second time that night (first time was thanks to Tanis' moving speech). I just felt so insanely stupidly happy and lucky!

Suddenly a shooting star crossed the sky in my moment of life-drunk gratitude. And because it happened just so perfectly at a time where I was feeling SO good - I took this shooting star as a sign. It was the only time in the entire day that cancer came up in my mind and I felt a deep-seated desperation and longing for my life to continue on this positive course.

No more cancer. Just love and happiness. "Please let me have this." I thought. "Just please let me have this life."

The next day we had the pleasure of joining everyone once again at Mike's parents place for a post-wedding brunch. It was like an endless celebration and I wished so badly that no one had to leave that day.

But soon the newlyweds were solo that night and we were so incredibly exhausted but so very happy. So happy in fact that I realized that I had completely forgotten to take my Tamoxifen the night of the wedding! It was the first time in 8 months of being on that hot-flash inducing hormone-blocker drug that I forgot to take it. I couldn't help but laugh in the face of cancer then because it just showed how truly enthralled I was in the day. I loved that out of all the times to forget taking my pill - it was on our wedding day. Not even having to consciously push cancer reminders/thoughts out of my mind was like a gift. The sweetness of our wedding gave me a little peek at what life is like to be really happy and care-free again for the first time in a long time.

For that reason I have felt quite honestly a bit down that the wedding celebrations are over... The high I was on I am slowly coming down from. I am still definitely basking in the after-glow of it all but that care-free feeling I had has somewhat diminished. We are back to reality this week... Mike's working, I'm facing paperwork, physician follow-ups, therapists and case managers. I think I feel a bit nostalgic too because the build up to the wedding was just so intense, the day came and suddenly it was done. Someone reassured me this week that it is common for a bride to feel post-wedding blues. It makes sense. After all, it is one of the happiest days of your life, the work leading up to it takes months and then it is over in a flash. Just like that.

But I know for Mike and I - it really felt that for two full days we were living in this perfect movie - starring one lucky girl and one lucky guy. It was a magical time in our lives that will always be remembered in our hearts. Like a really good dream or a sweet fairytale - only it was beautifully real and true.

Nothing but pure in the moment wedding bliss.

LOVE IT.

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

!
All images: P H O T O P H I L C R O - Photography by Phil Crozier
Fairytale quote + heart shaped rocks: A gift from my sweet friend Cécile
Chalkboard art + wedding decor: Me :)

A + M = Together, We Rule

2013-06-27T07:00:00.000-07:00

!!! 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!)

Throw cancer or other serious illness into the mix and you are bound for a daunting line up of all new kinds of obstacles, stresses, frustrations and feats to conquer. Sometimes these mountains get climbed together as a team. And sometimes sadly the heaviness of a cancer diagnosis is too much and the two paths may slowly grow further a part... or a person just bails all together.

Cancer really does take the term 'challenge' to a whole new level when it comes to relationships. On one hand it will test you and your partner's strength... but it also helps take the heat off of all of those other silly little things you used to argue about. Those dirty socks on the floor or nagging reminders no longer hold as much weight. A life threatening illness or scare of losing your loved one will do that. It will also help you see what really matters and make you see how precious your life, your relationships and loved ones truly are. Not that you didn't know this before, but it just elevates your emotions and makes you recognize so much more that we are often a little aloof about before staring down something as serious as cancer.

In the Summer of 2010 Mike and I had our first dose of this kind of relationship shake-up. We were going on 6 years of our togetherness and things were generally pretty good. It was a hot sunny July and Mike was not feeling like himself which was extremely odd for him. After a walk-in doctor visit and some blood work Mike was called by the clinic physician the following day to go to the emergency room at St. Mary's Hospital as soon as possible. No explanation was given on the phone but we soon learned that his blood cell count was really low. Normal red blood cell count is around 120-160 and he was sitting at 30.

At first we thought he might just need a blood transfusion but upon further review the ER physician said that Mike had anti-bodies in his blood which would reject any other blood at this point - so a transfusion was not possible. Several tests later we were told we needed to get on the first ferry the next day and go to the ER at Vancouver General because no one at St. Mary's knew what was wrong with him and he would need to see a hematologist.

At VGH Mike was met by several specialists, interns, residents and nurses. He had more than 30 different vials of blood samples taken and they were hunting for all possible causes of this drop in blood count and strange presence of anti-bodies. Neither issue could be explained and even though we tried to hide it, we both knew the other was scared.

Waiting for answers at VGH : 2010

Sitting beside him, seeing his worried face I got a glimpse of what it was like to be a helpless loved one. You want so badly to comfort and give support... You want to be able to tell them it's going to be OK and that you will protect them from anything bad. You want to be the strong one but are holding back from falling apart. I didn't want to leave his side and even ended up getting a reclining chair to sleep beside him in the ACU room he later was moved to. When the doctors would ask if I was his wife I would say yes even though we were not technically married. I wanted to be as close to him as possible in any way I could at that time. And the fact that I was just merely a 'girlfriend' or common-law spouse was not enough for me.

Worst case scenarios played out in my mind and though we later both brought it up, we did not dare utter the word cancer during this unknown diagnosis period. But soon we had some possible answers after his CT scan came out normal and all other blood tests showed no signs of trouble. They were next going to be testing to see if he had an auto-immune disease by giving him a dose of steroids... not the 'I pump iron' variety but the anti-inflammatory immune suppressant type. This one was Prednisone... which we later re-named PREGnisone because of the weight gain and mood swings it causes.

48 hours later we spoke to the hematology specialist who reported that the Prednisone was working and Mike was given an official diagnosis of Auto-Immune Hemolytic Anemia. Basically his own immune system was attacking his red blood cells for no real apparent reason. To this day we still don't know what caused it and we may never know. We were just so very lucky that it was treatable with the drugs and that now 3 years later he is healthy and has had no recurrence, even though he was told he probably would.

The take-control head shave : April 2012

Now fast forward to December 15, 2011 when I first was told that the lump in my boob was suspicious... I kept thinking back to Mike's health scare and how it just couldn't be possible that we would both have something so serious like this so close together. How and why were we both facing these bizarre tests, scans and hospital experiences at such a young age? My theories on this I could get into right now but I will save that for another time.

All I know is that I think Mike's blood disorder anomaly may have prepared us for what was about to happen to me. The waiting and unknowns is so difficult in the first stages of any serious health scare. But I think had we not been through Mike's case first we may have been even more torn up waiting for my results. And although Mike has had a clean bill of health ever since, I would be lying if I said I never worried about him now. For me, anything could happen at anytime for all of us. I don't actively think this way 24/7 but the concern for him does hold a little space in my mind every so often. I think cancer heightened this worry and acute awareness for me though... I am, after all, on quite high alert these days ever since my own multi-factorial 'sporadic' diagnosis of breast cancer. Read: it was not genetic therefore we have no clue what caused it. Read: Not knowing is terrifying because you always wonder if it will return because you don't know what to avoid in order to keep it from happening again. And so begins the cycle of fear... *insert catatonic stare into the deep dark abyss of worry and fear here*

Chemo done : July 2012

But fear and health challenges aside, Mike and I have really shown each other what the other is made of these passed few years. Thankfully, cancer has really strengthened us as individuals but also in our relationship and although there have definitely been some tough times in the last year and half I am very lucky to have had such a supportive and caring partner by my side. When I say Mike has really been amazing throughout this whole cancer craziness, I mean it. I feel like I am bragging because he is just that awesome. He has been such a rockstar caregiver and I am just one lucky girl I tell ya! ;)

We have definitely seen a lot together and times have been good, bad, scary, frustrating... but in tough times I am always comforted when Mike is with me. And even more so since the shit we have had to go through in the last few years. We could be in a horrible traffic jam... waiting for my oncologist... on the floor of a leaky bus in Thailand... dealing with awful news... facing life altering decisions... Those moments are either just not fun or very hard to come to terms with - but they are always made a little bit easier because we are together.

As you might guess, that strong urge to be Mike's wife and to be married never left after that Summer in 2010. It became important to us and we often talked about eloping to Tofino... or Hawaii... but we were taking our time and not rushing things. Then cancer hit and once again we were being challenged and were soon facing all kinds of stressful decisions and scary unknowns. It may sound strange but I think cancer helped accelerate our plan to tie the knot.

We finally were engaged in March last year in between preserving embryos and me starting chemo. We had a great series of engagement shots done by my friend Phil before I lost my hair. And now with treatment behind me (minus being on Tamoxifen for 4.5 more years) and after being together almost 9 years to the day, Mike and I are getting hitched this weekend on June 29. Hurrah! :)

Ahhh wedding planning... That has been interesting.

I often shake my head at myself for wanting to plan something like this so soon after dealing with cancer because my stress levels haven't really been given much of a break. I had no idea that even a small little wedding could still be so much work. Either way I am happy we are doing it the way we are - although we do wish we could have afforded to do it with more family and friends.

Wedding prep stress aside, I am over the moon to be marrying my best friend in less than 2 days. After everything we have been through together it just makes this day that much sweeter. Mike says he is the lucky one, but I think I scored pretty fabulously with the kind, caring, patient and giving soul that he is and I could not ask for a better person to spend the rest of my life with. I am fricking stoked! :)

Love you Mikey xoxo

Being freaks : circa 2004

Life Update: Part 2

2013-05-31T12:33:00.000-07:00

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.

So. You wanna hear all about my new nipple? Of course you do! ;)

Surgery was scheduled the day after we returned from our Young Adult Cancer Retreat adventure in Calgary on April 25... (Hard to believe it was already over a month ago). It was in a private surgical centre in Vancouver and the procedure was going to be about an hour long. I was freaking nervous as hell while Mike and I waited in the patient change room for Dr. Van Awesome to come mark up my foob.

Was I anxious about the surgery itself with the whole 'going under the knife' thing? Not as much. Nervous about what I was going to be like AFTERWARDS due to the anesthetic and pain killers? Through the roof worried! Scared that the new nip would take forever to heal and that I would regret my decision? Very much so.

But Dr. Van Awesome came in, told me this was going to be much easier than the last operation and explained it was normal for me to be nervous either way. She also assured me she was going to do a fantastic job and that I could relax knowing it was going to turn out fabulous. I breathed a little sigh of relief, knowing I would be in good hands. Then there was the anesthesiologist who pretended to not understand why I was so anxious but reassured me that I would do fine in recovery as it was not nearly the amount of anesthetic that I had during my mastectomy. Like he knew?

Entertaining myself to distract the mind

After a change room photo shoot of random "Not bored, but trying to distract myself and get my mind off this" pictures taken by my dear Mikey... I was off to the OR and was told Mike would see me about an hour after the surgery in the second recovery room.

The procedure itself in detail as explained prior to the surgery: The fake boob would have a circle cut into it... that circle of skin would be origamied-up into my new nipple and then a skin graft from the side of my body near my scar from the mastectomy would be used to fill the space where the circle had been removed from. Kind of acting like the areola. If that makes sense. Next up would be the finishing touch that Dr. Van Awesome insisted on doing to perfect her 'work of art'... She was going to take fat from my stomach (aka liposuction) and inject it into my chest just above the implant where I had this caved-in indent from the mastectomy.

Fun times.

So there I am laying on the operating table, my mouth starts to get dry and pasty as I am getting an IV in my hand for what felt like the one hundredth time this year. Then I felt a stinging go up my arm as one of the nurses asked me where I live on the Sunshine Coast. And before I could answer I nodded off into anesthesia land.

Waking up I was of course extremely groggy and I took an hour and 45 minutes to recover in the first recovery room. Much longer than most people apparently. But it was not just because I kept falling back asleep from the anesthetic... it was because I was first nauseated. Gravol. And then shaking uncontrollably. Ativan. Then in a lot of pain in my stomach from the lipo. Oxycontin.

Super messed up in the second recovery room

I was on a crap load of drugs. Not to mention the anesthetic and the other drugs I was already given for pain before I woke up. By the time I was coherent enough to stand and make my way into recovery room number two I was hiiiiigh as a fricking kite.

I don't remember much from this time except how difficult it was to understand my nurse's accent as well as insisting that Mike shoot video and take pictures of me while I was getting assistance putting on my sports bra. (The heck?) ...I also recall Dr. Van Awesome making a few appearances to tell me what a trooper I was, how well the procedure went and that she was very touched when I told her what name I used for her on my blog.

Icing the tummy and feeling pretty miserable

I don't remember how I got pants on. I don't remember my first pee. I don't remember leaving the building. I don't remember misplacing my favourite black bandeau bra. I don't remember Mike pointing out the new Victoria's Secret on Robson. I don't remember the drive to the ferry. I don't remember being on the ferry. And I don't remember going to bed that night.

The next few days were also a blur, although I do remember them for the most part. In short: I was very sick. I was very sore. Very depressed. And very much a wreck. Read further for the long version if you dare... or care! ;)

Then days 2 - 4, in true Ashley form, I reacted exactly as I did the last time I was given an anesthetic: vasovagol (fancy word for fainting), panic attacks and, my favourite, puking.

Don't remember taking these cause I was cooooked!

I remember being so scared. So unsure of what was happening with my body. Being so f-ed up on so many drugs and wishing that they could all just leave my system instantly. I was also in so much excruciating pain in my tummy and just so completely afraid of having to be taken to the hospital if something bad were to happen that I began to fall into that oh so familiar dark tunnel of fear. The worry of hospitals, ambulances and being rushed into emergency seemed to engulf my mind. The thought of being in a vehicle made me even more anxious as it always does when I am this freaked out and my head spun like crazy as I began to feel more and more nauseated. I was freezing cold and shivering uncontrollably while simultaneously sweating and feeling that overwhelming panic of "WTF is happening to me!?". And as my face grew hotter and hotter my ears began to ring and I could no longer hear Mike trying to say calming soothing words to me. And that is always a sure sign of a fainting attack right there.

The fear that overcomes me at times like these is so unbearable that I wish someone could tranquilize me for several days until I can wake up feeling more human again and the memory of the trauma magically wiped from my mind.

After several ups and downs of anxiety attacks I remember Mike holding my hand and telling me to give all my worry to him. "Put it all on me" he would say. But I couldn't find a way. I just kept spinning and my vivid imagination took me on yet another scary ride of my own worse case scenarios... ambulances, hospitals, IVs, cancer, doctors, tests, waiting, MRIs, more waiting, more cancer, lack of control, pain, fear, loneliness and dying.

Mike and I must have hung out in our small bathroom for 4 hours on the third day of my recovery. I knew I was going to be sick. I knew I needed to be close to the sink where Mike could soak a cool facecloth for me when the heat would surge up into my head and the panic attacks would start up. I soon realized that if I could just try breathing slowly with Mike doing the same in rhythm along side me then I could potentially calm myself down. This didn't work at first, but eventually, after throwing up I was able to find some comfort from the in-and-out of my breathe and also in the hope that I was passed the nausea portion of my recovery.

I don't like feeling this way. No, this was not the easy recovery period I was told I would have. I knew I was going to be healing and was going to be resting for 7-10 days but I was not prepared for this to be just like the last time. I didn't think I would still only be able to eat liquids 4 days after the operation. Didn't anticipate the pain. Feared the fainting, panic and puking but kept trusting the professionals when they said it wasn't going to be as bad as the first surgery.

Then a sadness overcame me that week. I was once again being kicked down. I was back in the space that cancer put me. I felt like I was a patient again. I was recovering from surgery for a second time and doing it miserably. I was sore, weak, loopy and anxious. I kept thinking that this had to be the last operation. Never again would I be able to have another surgery. And I worried about getting cancer again more so in that one week than I have in the last 3 months. And all the while I became more and more deflated. I felt so alone really, even though I had Mike by my side. And I felt pathetically useless because I couldn't (once again) use my left arm for anything which reminded me so much of the last surgery. Then I worried that I was going to need even more physio and have even more PTSD issues from this latest experience. This "easy" surgery!

Let's talk about that actually... The "easy" surgery... hehe... I laugh now, but oh man... I was not prepared. And you know, I am actually glad I wasn't prepared. Because if anyone had warned me about the pain I would feel from this procedure, I probably would not have gone through with it.

But first lets talk about the nipple: I can't feel it. It's numb. I felt no pain from the operation. And for the first week all I could see was this mound of gauze and I wasn't supposed to look under it. The second week the gauze was removed and replace with another. And the third week I had graduated to no more bandages.

The skin where they took the fat grafting from: That hurt a tiny bit. Mostly when I would try to get up or move too fast. Even today it hurts if I roll on my left side or reach above my head (yes, my arm movement has almost gone back to normal - hooray!) But the pain here was nothing compared to the pain in my stomach and my upper chest from the fat stealing and injection.

Holy brutality batman.

To think that there are actually people in this world who VOLUNTEER and WANT to do liposuction is just beyond me. The pain I experienced from this was so intense the only way to describe it was to imagine the following: Picture a metal ice cream scoop. Now imagine it going into the lower part of your tummy beneath your navel and fricking scooping out all your tissue from left to right.

It was f-ing BRUTAL. No other way to put it. People are INSANE that do this willingly.

The progression of bruise healing throughout the weeks

Now that I have just officially sicked myself out again by that mental image... I am gonna add to it by sharing some lovely photos of what my poor belly looked like after the ice cream scoop. (In reality, it's actually a little tube that goes in one side and sucks everything out in a "fanned" motion so not to leave any noticeable 'holes'. Like a fat vacuum. Nasty right?

A glorious rainbow of colours

Fat injection region

Ok... and then there was the injection site... Pretty sore it was. But not nearly as bad as the tum tum. And I must say, for the 'easy' surgery, the pain I felt from the suckage/injection combined was definitely 10 times worse than the pain I had after my mastectomy. Which actually kinda shocks me but makes sense when you think about the fact that I have no nerves left in my foob, which explains why I can't feel the new nippy.

Which leads me to something I obsessively do every morning when I wake up these days...

Because I can't feel the nipple, in the last month since the bandage was removed I often will feel the need to check up on it. Have a peak to see how it's doing. Monitoring it. Making sure it's still hangin' on. So whenever I wake up in the morning I find myself looking down and making sure it's actually still there. Not like 'was it all a dream?' type is it there?... More like, has it bloody-well fallen off?

You see, the new nip is a strange thing. First of all, this whole recon business is kind of bizarre in itself because I went from having a nippleless Barbie mound for nearly 16 months to having a fake nipple in a matter of hours. The cool thing is that it is actually made out of my own skin. It is tissue that was removed, sewed back on and could have potentially decided not to comply with the healing process. Known as 'rejection'. Luckily for me, it has proven to be healing quite nicely in the last month, and although I still have a running stitch tied off on it and a few more dissolving ones hanging out to hold it all delicately together, it definitely is doing it's job in healing each day. Pretty amazing what can be done these days...

But it is still looks weird as heck to me! And any time I have accidentally hit the poor little thing, it feels like it is hanging on by a thread. Which more than freaks me out each time that occurs of course. Thankfully the worst thing that happened was that it started to bleed once after I smoked myself with my own fist while trying to pull on a shirt. I feared that I would be set back that day and worried that I would soon find myself back in Dr. Van Awesome's office getting more stitches... But gratefully, the new nip continued to heal.

I even gave it a few nicknames actually... "button boob" and "jujube nip"... Currently it is working it's way through the scabbing process and is looking a lot more nipple-like each week... but two, three weeks ago it was another sight I tell ya! I kept comparing it to one of those weird purple speckled 25 cent candies I used to beg my parents for change for at the mall when I was a kid. It's round, blacky/purple, yellowy in some parts, scabby and creepy looking. It's like a a few raisins mashed up and formed into the shape of a circle. It's like a creepy little sewed on button that I so easily hit because I am still not used to the extra protrusion... Each time, having to double check to make sure it's still attached as I said before.

OK you get the picture. It's quite foreign to me. And it's fake. But even though it isn't a real nip and was made by the hands of a talented plastic surgeon, I gotta say, looking past the scabbiness, it's pretty damn good. At first I worried that it was too low and I had a mini freak out about it not lining up with my other side. Upon further inspection though, I can happily say that it is indeed in the correct place. Dr. Van Awesome did an amazing job and despite my recovery from it all being a bit of a hellacious mess, I am pretty pleased with the results... Even if I still can't quite see the final product yet because of the wonderful scabs. (The full healing will be at least another month or so away apparently, at which time we will talk about the finishing touches of getting the tattoo/pigment addition) Goodie!

As for my poor tummy... it is not nearly as sore as it was - thank goodness. The bruising is almost all gone but the internal scarring is still there. Sometimes when I get out of bed in the morning it really hurts and I have to be patient and remind myself that it is going to be awhile before the scar tissue breaks down. I can still feel a section of hardness in behind a swollen area on the right side. I swear it feels like someone embedded a chunk of cheese under my skin. Let's just say I shall not be doing any ab workouts any time soon.

But alas, I made it through another crazy reconstruction surgery ordeal...and I am just so thankful that it is over. I did it! I am here. I am healing. I am making my way through. I am getting used to the new body. Trying not to accidentally catch the nip on something or punch it when I get changed. Finding out that I can't get away with wearing thin layers anymore due to the permanent nipped-outness. Realizing that I was actually getting used to my life having one mannequin boob and now adjusting to the newness. Can't get away with only covering up the one side now if I make a quick dash with no shirt through the kitchen into the laundry room! Getting used to the fact that I have something goin' on now down there on the left side. Even maybe feeling a tiny bit more like a complete female again.

Hmmm? Still haven't decided on that last one quite yet.

A Little Detour

2013-05-16T10:43:00.001-07:00

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...

First off, I want to just acknowledge that yes, I believe Angelina Jolie is very courageous. Not just with her decision to make a choice for herself and her family because she was at high risk to developing breast cancer, but because she shared her story with the world. Anyone who missed hearing it from the horse's mouth can read her essay entitled "My Medical Choice" here. I think that she is not only raising awareness about the breast cancer genes BRCA1 & BRCA2 (I am surprised how many people don't know they exist!), but she is also stirring up some discussion for the future of woman's health. Maybe some positive changes will come out of having such a prominent celebrity figure share this type of health news? One can only hope.

After reading her article though I couldn't help but be left with a few thoughts of my own, much to which were formed because of comments people left below her story and the explosion of criticism that erupted on the Internet over her decision. Yes, there are actually people out there frowning upon her choice. Shame on them all! Some were complete assholes angry that a sex symbol like AJ would 'chop off' her breasts – I mean, how could she do that without consulting with her fans first!? Some were speaking as if they had been working in oncology for years but were spatting off crap that wasn't even accurate. There were also some super smart commenters saying her decision was extreme and said she was foolish for going through with it.

Hot damn this kind of criticism got me all fired up!

Until those people get either a breast cancer diagnosis or are told they have the gene they just shouldn't speak. If there is one thing I can't stand it's when people form these judgemental opinions of something they have never faced themselves. Unless they have been in that person's shoes and have dealt first hand with having to make such difficult decisions, people just should not judge!

On the other end of the spectrum, some in-awe Angelina fans were almost over-applauding her bravery as if there were not hundreds of thousands of every-day woman who have had to make this same decision to remove their breasts and ovaries, not to mention having to go through treatment as well. I swear, it was like some of these people live under a rock and have no clue that there is a breast cancer epidemic going on. Don't get me wrong, I fully commend Angelina for doing what she did and am not trying to minimize her experience, I just think that there are a lot of oblivious people who are forgetting that mastectomies are not new news and everyday ordinary woman are dealing with them too.

And then there were the blood boiling comments that made me wish I could smack the ignorant trolls upside the head. I read everything from "at least women get a free boob job out of it" to stating that once Angelina has her ovaries removed she will basically not be a woman anymore. Idiot! One intelligent wanna-be doctor was also insisting that the BMX decision was drastic and that women just need to change their lifestyles, eat right, don't smoke and they won't get cancer. Double idiot.

Other comments drove me nuts because people were comparing the experience of prophylactic (preventative) mastectomies to woman who have had to face a cancer diagnosis and the mastectomies to boot. Let's just be clear here: Being told you have the breast cancer gene and having the preventative surgery is NOT the same thing as having the surgery after being told you have breast cancer. Yes, it falls under the cancer umbrella, the decision may be just as difficult, surgery may be just as traumatic, sure, but it is not the same as being told you actually have cancer.

While I totally respect her personal story and appreciate her honesty to share it with the world, I want to point out a few things that were not mentioned in her essay. This is not to discredit anything she said, as it is her own experience, but I wanted to clarify and shed some light on some issues that were, in a sense, glossed over and not touched on...

1. Reconstructive surgery is not easy. As she put it in her op-ed: "days after surgery you can be back to a normal life..." For myself and many others, this could be nothing further from the truth in a lot of cases. If this was her experience, awesome. But the majority of woman I have talked to are not back to a normal life days after. I am happy for her that she is pleased with the work of her plastic surgeon and some of us, me included, are pretty blessed to have such talented doctors and pretty great results. But many are not so stoked with the final 'product'. Sure, it looks like a boob with a t-shirt on, but underneath is not always that perfectly constructed work of art that a wealthy actress might end up with. (BTW - Would love to see photos of hers actually!) Also, the process for a mastectomy and reconstruction generally takes a lot longer than the time frame she had. Being who she is, she is very fortunate to have all of the work done in such a short amount of time. Again, this isn't me trying to criticize her story, I am just voicing the reality of many women who have gone through this. I think it is important that people know (whether they are facing the same terrifying choice or not) that it is not as simple for most every-day women. The scars are not always small and the results are not always as great as a famous actress might get.

2. It is mentioned in the essay that the BRCA gene testing in the States costs $3000 - $4000 (In Canada it is free, but it takes as long as 9 - 12 months for the results and, from what I understand, it is still tested in the US ? Don't quote me on that). But in AJ's article, after encouraging woman with a strong history of breast cancer to get tested for the gene, it is not said why the test is so pricey. Well, for those of you already aware you can skip this part... but for people who don't know about Myriad Genetics and the fact they have a patent on the BRCA genes, please watch the below YouTube clip that will sum up why the heck the test is so damn expensive as well as the negative impact it has for everyone, especially those whose insurance does not cover the cost of the genetic counselling and test.

Bottom line: Corporations should not be allowed to own human genes. Not cool. And next month the US Supreme Court will be deciding whether to allow this insanity to continue or to outlaw it once and for all.

The above points and outrageous ridicule about her decision sums up why I am done hearing about this "big news". Let's see something done now! Get Angelina on board with Breast Cancer Action or Dr. Susan Love's Army of Woman and let's see some real progress. And while we're at it maybe Brad Pitt can ditch the perfume company ads he has been in because we all know those products are linked to breast cancer.

Maybe this could spark some change?

Life Update: Part 1

2013-05-07T22:06:00.002-07:00

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.

Part 1: Young Adult Cancer Canada (YACC) - Retreat Yourself Alberta & Calgary Hangouts

Although the dizziness and vertigo lingered (and is still around), I felt much better from my cold/flu when we left for Alberta. Mike and I enjoyed the quick 1 hour flight into Calgary and were on the bus to our meeting place at the Holiday Inn in no time. There we met our future friends for the young adult cancer retreat. It was a fantastic group... fellow survivors, supporters, peer supporters and facilitators. All of us, equally as nervous, curious, hopeful and excited for what the 4-day experience might bring.

At first Mike and I didn't know what to expect. We knew we wouldn't be spending a lot of time on our own as we were being assigned roommates once we arrived at the Lake Louise Inn, but we had no idea how much each person and each day might impact us. From the small group settings where everyone spoke with raw vulnerability sharing their stories, to the large group activities, games and presentations given by some of the survivors. A lot of it was out of our comfort zones and I think that is what made the weekend so powerful for Mike and I. It challenged us to be bold and open up from the often tight lid we put on our bottled up emotions.

Each day everyone became more and more comfortable with each other and by the second evening it almost felt like we were one big family. We ate all of our meals together at two big long tables and each gathering there was this great sense of community. The feeling of belonging really hit me and I soon realized how much I had needed this face-to-face interaction with people who were young and dealing with cancer like I was. There really is nothing else like being in the presence of a group of people who have walked in similar shoes and just 'get it'. Especially when they are young like me!

Being surrounded with such an inspiring and courageous group was uplifting to say the least. There were definitely some more serious emotional moments and intense discussion but it was nicely balanced with the fun and humour that was brought to the group by so many of the participants. We even had a talent show on the last night in which we were all highly entertained. The last to present, my friend Robin and I sang while I played piano. (First time doing something like that - The weekend made me feel extra brave! An added bonus!)

My hopes for this retreat had been to connect, make new friends and come home feeling lighter. I can quite happily say that all three of those things happened, and then some. Not only did I meet some great people, but their stories helped me understand more about my own. And with some of the key discussion groups we had on topics such as relationship changes, recurrence fears, coping and finding the "new normal" (also known as reintrajectorization! Yes, there is a word for that!), both Mike and I really were able to feel free to share and be ourselves. There was also arts and crafts time where we all made something creative around the reintrajectorization subject. Here's what Mike and I came up with...

One thing I didn't see coming: I had no thought in my mind that Mike and I could have grown any closer and surprisingly this retreat did just that for us. For me, it was seeing him toss away the tough shell and watching him let loose, interact and express himself. I felt so proud of him the last day during our closing ceremony of the retreat. To see him sharing so openly with people made my heart so full. And to hear that his words had impacted others really was more than I could have hoped for him.

We both left Lake Louise with some take homes... I felt a clearer direction in life, I felt lighter, connected and hopeful. You could even say I feel more determined... (Thank you Andrew for that word). For Mike, he learned about honesty and communication. And I think for both of us, hearing the sides of both survivors and supporters each day, we both have a more compassionate point of view for what the other person faces.

As the final day approached and we all parted and went our separate ways a feeling of sadness overcame me. I was totally going to miss these awesome people. This experience and the friends we made will always be kept close to my heart forever. Having the retreat end was like coming home from camp as a kid and having to go back to your usual routine where no one around you understood what kind of fun you had just had. Mike and I both felt the retreat withdrawal. So at least we were in it together. I worried that we were going to be in too much of a reflective mood when we got back to Calgary and met my high school friend Phil... I wasn't sure I was going to be up for much chit chat, but fortunately Phil totally understood and Mike and I were able to share and look back on the weekend without boring him too much.

The retreat feeling lasted as we spent 2 nights in Calgary with Phil, who I will totally add right now, is thee most amazing photographer ever. Ridiculously talented this guy is! See here and here (our engagement shoot he did for us last year).

Phil showed us some cool spots in Calgary and the city really pleasantly surprised us both. Lots of young people, a lot of hoppin' brewhouses (which Mike loved), tons of opportunity and a fairly friendly vibe. I especially liked 17th avenue's cafés, restaurants and bars. There was always something going on and even on a week night places were packed. Being with Phil also felt like we were with someone famous because he doesn't go anywhere without running into a slew of people. I think that's why Calgary seemed so friendly to us too... There was always someone somewhere to say hi to and meet.

While we were in Calgary I also got to meet up with a few cancer buddies I had met online. The lovely Ashley who is a fellow breast cancer survivor and my Instagram friend Sue and her cute miniature pet pig Hammy. I love meeting other survivors in person for the first time. Social media has been a great outlet for me when it comes to connecting with others facing cancer, but meeting people in person is always so much better. And when I do get the opportunity to meet an online cancer friend in person, I almost feel as if they are a celebrity. Really excited and just so stoked to finally see them in real life. You feel like you know them already but then you meet them in person there's almost a funny feeling of butterflies when you see the face you only usually see on your tiny iPhone.

We were also lucky to squeeze in a coffee date with my cousin Brittany who moved from Ontario to Calgary a few years ago. We hadn't seen each other in about 4 years so it was great to catch up.

Our Alberta tripped was sure packed... but it was so rewarding and fun. Leaving Phil's place was hard because we had really gotten quite cozy in his place and enjoyed the laid back living. Phil is a great host and Mike and I really enjoyed how chill the 3 days were. I was also going to miss his neighbour's sweet little dog Momo. Cutest little thing ever.

Going home wasn't one of those usual trips back to your own city where you get on the plane and just want to get there. No, I wasn't really looking forward to getting back to Vancouver. I was too busy thinking about how awesome everything had just been but now how I was going to be facing the rest of my reconstructive surgery the next day. At least we had the distraction of visiting with Mamka back in Vancouver to keep my mind off of it until the next morning though. But really, I was still totally basking in the glow of our Retreat Yourself 'high' and that was almost enough to keep me from worrying too much the night before the surgery... Ahhh surgery... I will save that story for part 2.

Before I sign off completely though, I want to mention some stuff about Young Adult Cancer Canada (YACC) for any eligible young Canadian cancer peeps who might be reading this blog...

Retreat Yourself BC, I hear, is booked up but Retreat Yourself Nova Scotia is this July... check that out. And Retreat Yourself Adventure (with zip-lining!) in Newfoundland is in August... check that out here. Even if you don't live in those provinces you can still apply and get assistance with your flights. Mike and I didn't have to pay a thing as we had some help from YACC donors and a few other very generous donations, which was awesome! Also... there is a Young Adult Cancer Conference in Toronto this Fall which sounds pretty cool. For more information about YACC and their awesomeness, go here: www.youngadultcancer.ca

YACC really is helping so many of us youngins who have been forced to deal with cancer. So thankful to have been put in touch with them and to have experienced such an amazing retreat with a fabulous group of people! I feel so grateful for the opportunity.

Heart: Happy.

There's Beauty In The Breakdown

2013-04-15T20:00:00.000-07:00

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!?)

At times like these there really are no words.

I just feel so sad about all the suffering. I pray for healing and strength. Peace and love to so many right now.

By the end of this week I will hopefully be doing some continued healing of my own. I am attending a Young Adult cancer retreat in Lake Louise, Alberta that I am both nervous and excited about. I was fortunate enough to have the entire trip paid for by the aid of Young Adult Cancer Canada as well as some generous donations from a previous employer and a few family members. YACC's mission is that money issues don't keep people from being able to attend their retreats and I am so thankful for that. Because of this, Mike is able to go as my support person which I am so grateful for. This will give us both the opportunity to meet with other under 35ers who have been affected by cancer. We will spend the weekend with others who get the challenges we have faced. Be heard and understood. Get out the things we might need to say to people who 'get it'. And hopefully make a few new friends and come home feeling lighter.

Only, the day after we return from Calgary I have surgery so I imagine 'lighter' might not be exactly my state of mind. I am already pretty anxious about the tight time frame of our agenda, the flying and the travel in general. Throw a surgery in the mix and I am actively playing out the various scenarios in my mind of what could go wrong. Have I mentioned how much cancer has amplified worry for me?

Speaking of amplified worry... I still have man-voice in the mornings, a wimpy cough, dizziness and vertigo caused by the virus I have had. But I am on the mend and made it through my first flu bug since being diagnosed. I got through it but not without some really horrible days of fear and what I will refer to as 'pent up trauma'.

These were my worst sick days where not only was I was convinced that my flu was cancer again, I also thought I could be dying. In my skewed mind it was cancer showing me that my immune system was down and that it was wreaking havoc on my cells. I had a few PTSD incidents where I was reminded of my chemo days and felt so sick to my stomach that I couldn't control the worry and sheer fear of treatment.

Just when I thought I was doing so much better with not fearing recurrence every single day, I was hit with this overwhelming terror of having to deal with cancer again. And all the things that come with it. Mostly it was the thought of chemo that terrified me. And the more I thought of it, the more nauseous I felt. The more nauseous I felt, the more I feared cancer and treatment again. The more I thought of being told I had cancer the more I could taste the drugs in my mouth. The more I tasted the drug the more I could vividly recall how robbed my mind was during those Dexamethosone hazes. And how screwed up it made me on all levels.

And then I just felt so ill. My blueberry and kale shake disgusted me, bringing me back to treatment days. The glass of water and vitamins in front of me reminded me of being taken care of during chemo. Even sitting on the couch wrapped up in blankets made me want to run far far away from my own skin.

It was a vicious cycle of feeling like I was going to barf, being reminded of things that made me feel that way, and feeling that way even more. And I completely spiralled as the merry-go-round from hell spun me around and around until I was so far down I couldn't keep myself from sobbing as Mike held me.

Those were not good sick days.

Finally what helped me was going to the beach and screaming at nothing and everything from the top of my lungs. This sounded pretty weak considering I barely had a voice to begin with, but luckily there was no one around to hear me. Except Mike, of course, who kept anxiously looking around to make sure nobody happened to be close by in case they thought I was yelling at him. Such a good sport he is.

And all that screaming... It released something for me.

As I cried kneeling down on the rocks I felt so broken but yet so alive at the same time. Like I had been waiting to let go of what I had been holding on to for months. All that held emotion. The Fear. Sadness. Anger. Frustration. I was letting go.

And as if on queue, just as I was about to stand up, the clouds parted above me and the sun came out for about 30 seconds. And I laughed at the beautiful perfection of this and felt much better.

Sometimes I guess all you need is a good cry and a random screaming session to help you get out of that pitiful hole of despair. After all, we can only hold things in for so long before we burst. You can't keep it in. It must come out.

First Chemo Anniversary & First Flu Since Cancer

2013-04-03T07:00:00.000-07:00

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.

The days following that first infusion were a blur. Day 2 is missing because I spent the entire day crying on the couch. Then I took these photos of myself every day after that to track my progress... to capture my current state and monitor how rough I was feeling. And to see if the amount of shit I felt like was viewable in pictures. This first round I was fortunate to feel much more human again by day 9... slowly as the treatment rounds went on, it would take longer.

I don't know if it's sympathy sickness for what I was going through a year ago... or just pure coincidence that I am under the weather this week... All I know is this is the first time I have gotten any kind of flu or cold in over 16 months.

It's ironic to think that I had cancer, but never did I feel sick (excluding chemo obviously) And never did I catch a cold or any of the nasty flus that went around. I was spared until now. I like to think it was because I had already had my fair share of feeling rotten, but I think a lot of it had to do with how I have taken care of myself since I was diagnosed.

But today I feel like absolute crap. It started out as a sore throat Monday... then achy shoulders and a sore collarbone area (paranoia settling in with that one)... and it has progressed into a full blown fever, chills, body aches and overall soreness. Even my skin hurts. I haven't felt anything like this since Taxol (my last chemo drug) and even then, it definitely doesn't come close to the pain I had during that time. I have obviously seen worse times, in other words.

But unfortunately, thanks to cancer, I am having a hard time not worrying or having fear about how I am feeling. Gone are the days where a sore throat was just a sore throat... or when body aches were just body aches. Now it's "What if it's cancer? ...What if it's presenting itself again?" And the ever dramatic... "What if I am actually dying?"

Luckily I have Mike to take care of me and talk some sense into my wild and anxious imagination. He has been green juicing me up and making soups. I'm popping reishi mushroom capsules, oscillococcinum, the occasional Advil and a shit load of vitamin C and D.

It's just a flu bug. It's just my body telling me I was doing too much. It's from running myself dry and it's now catching up to me. It's eating shitty sugary easter junk and me falling off the nutritious food wagon for three days. It's being in the city with too many things to do. It's just what happens when people are exposed to germs. It's just an innocent sick spell.

It's just the flu. Nothing more. And I have definitely seen worse days.

Kicking Cancer Interview: Lauren Trigge

2013-03-29T06:30:00.000-07:00

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.

NAME: Lauren Ann Trigge (soon to be Roy!!!)

TYPE OF CANCER / OFFICIAL DIAGNOSIS: Nodular Sclerosing Hodgkins Lymphoma

CURRENT AGE: 24

AGE AT DIAGNOSIS: 22

HOMETOWN: York, Maine

OCCUPATION: Currently working part time retail, but I have a kindergarten - 8th grade degree that I’m waiting to use, hopefully this fall!

HOW DID YOU FIND OUT YOU WERE SICK? WHAT LED UP TO YOUR DIAGNOSIS? When I was student teaching in 2010 I found a bump on my neck, just above my left clavicle. It got bigger and more sore as time went on. It was misdiagnosed as a lipoma and a swollen thyroid before I pushed to have imaging and a biopsy done. I also had very itchy skin. I was itching my legs raw while I slept. I was definitely tired but it was my senior year of college and I figured everyone else was just as tired. I also had one sinus infection after another and they never seemed to clear up completely.

IS THERE CANCER IN YOUR FAMILY HISTORY? Not in young adulthood to our knowledge. Although it is hard to know if someone only a few generations back died of Lymphoma, because Doctors could have called it something else.

WHAT WERE YOUR FIRST THOUGHTS WHEN YOU WERE DIAGNOSED? I actually got sent home from work on my results day because I was a nervous wreck. My heart knew. The results had been sent to California for a ‘second opinion’. My doctor called as soon as I got home and asked if I was alone or if I wanted to call someone to come over before I spoke with him. I begged him to just say it because I was ready to throw up. When he told me my body started shaking and I got very cold. I was so confused. I was angry that the bump had been there for months as different doctors dismissed it. I was so sad for my family to have to hear the words “ I have cancer” come out of my mouth. I felt guilty that they were going to have to travel this journey with me. And I was mad that when I had searched my symptoms online months before, WebMD had said Hodgkins Lymphoma.

HOW DID YOUR FAMILY REACT? They were wonderful. They surrounded me with love. My Mothers’ sisters took turns visiting us. My Mum took off work to be with me. My sister and baby niece took me to every chemo appointment. My sister dressed her up in a new ‘ I love Auntie’ outfit for every one! When you have fresh, new, healthy life to make you smile, everything gets a little bit easier.

HOW DID YOUR FRIENDS REACT? I have a beautiful silver bracelet that belongs to my 5 best friends and I. We got it when we graduated high school and it has our names on it. We pass it along to each other when times get tough for one of us. Within 2 days of being diagnosed, there it was, on my doorstep. What was hard is that some friends really stepped up but a lot of people disappeared. After all, what do you say to a 22 year old fighting for her life? I now try to think of cancer as a Darwinian approach to weeding out who is really worth your time.

HOW LONG DO YOU THINK CANCER HAD BEEN IN YOUR BODY? I think it probably began when I was 21. That is when I started getting sinus infections that I couldn’t fight off.

ARE THERE ANY SPECIFIC CHALLENGES YOU BELIEVE DIFFERENTIATES YOUNG/YOUNGISH ADULTS COPING WITH CANCER AS OPPOSED TO PEOPLE WHO ARE DIAGNOSED LATER IN LIFE? For sure! We are too young to pay for this on our own but old enough to want to try to do it all by ourselves. It’s an awkward time to have to start leaning on your family again because you feel as though you just weened off of them! Many young adults with cancer still need their parents insurance. ( In the states we can stay on until we’re 26). It’s difficult to have to make life changing decisions about preserving their fertility when you are in a new or immature relationship. Young adults have little or no savings and student loans that are NOT easy to put into deferment. They are the youngest at their oncologist offices. They have young children that need to be taken care of. We are the lost generation of cancer patients and we most definitely have unique needs.

DID YOU CONTINUE TO WORK AFTER YOUR DIAGNOSIS? Yes. I worked at a preschool. My boss’ husband had NH Lymphoma so she was super understanding, as were the rest of the teachers. I would work every other week- on my off week from chemo. When I got radiation I would work only mornings. When I started stem cell preparations, I had to stop working completely because my immune system was weaker and my energy level dropped significantly.

DID YOU HAVE SURGERY? IF SO, WHAT DID IT CONSIST OF? Two separate lymph node biopsies in my neck, a port placement and removal ( for administering chemo), egg harvest, and a Hickman line placement ( for harvesting stem cells and administering high dose chemo).

WHAT HAS YOUR TREATMENT CONSISTED OF? I have had 6 months of ABVD chemo (All of you breast cancer peeps know the big A in that one, our mouth sore giving friend Adriamycin), a month of daily radiation to my chest and throat, three months of conditioning ICE chemo, an autologous stem cell transplant (This is when you harvest and freeze the cells responsible for making red and white blood cells and platelets so that you can get high doses of chemo. Normally, ‘high dose’ would wipe out your bone marrow and you would not have an immune system... Read: Bubble boy!!! ...but after the high dose chemo, you get your stem cells back and some shots to support your cell growth, and your immune system is able to bounce back), and another month of daily radiation to my axilla - fancy name for armpit.

WHAT HAVE BEEN THE MOST DIFFICULT SIDE EFFECTS YOU HAVE HAD TO COPE BECAUSE OF YOUR TREATMENT? After a stem cell transplant your immune system is very weak. You have to wear a mask and gloves if you go out in public. We are super germaphobes now, but it is stressful to have to worry that much about germs because sometimes it means that we can’t do what we want to, when we want to do it. Fatigue is also a really big factor in my life right now. It is hard to be gentle with myself as far as my energy levels go. I have to constantly communicate with my loved ones about how I’m feeling so that they don’t mistake my fatigue for something else, like boredom or disinterest.

IF YOU HAD TO DO IT ALL OVER AGAIN, WOULD YOU HAVE CHANGED ANYTHING? I would have started seeing a therapist muuuuuuch earlier in the game :) And of course, hindsight is 20/20. Sure I can say: “I would have pushed to go to Dana Farber and see the experts earlier” but it really doesn’t help to do that. It’s also so theoretical. Who knows if anything would have worked differently!

WHAT HAS BEEN THE MOST DIFFICULT PART ABOUT THE CHALLENGE OF COPING WITH CANCER? Guilt. I feel so guilty that my fiancé is on this journey with me. I feel horrible that I may not be able to have his children. I hate having my family worry for me. I don’t like that they have to take care of me because I know it is so life consuming for them. Our lives are cancerCANCERcancer all of the time.

HAVE YOU STRUGGLED WITH SLEEP OR FOUND IT DIFFICULT TO FULLY RELAX? Quite the opposite now. I need about 10-12 hours of sleep a night! If I don’t get it I feel tired and achy. It’s hard to schedule a life around that much sleep. During and after my hospital stay, it was difficult to stay asleep because they take your vitals every 4 hrs and you soon get into the habit of waking up often. It only took a few weeks to be able to sleep better. I also had trouble sleeping when I was given Lupron to protect my fertility during ABVD chemo. It jolts you into menopause - hot flashes, night sweats and all. Lastly I had trouble sleeping because of muscle pain while on Neupogen because it felt as though my skin hurt all of the time. I had to try a few different prescriptions to help sleep but finally found one that worked! And when it did, it made my days so much more comfortable, too.

HOW DO YOU HANDLE THE STRESS OF FOLLOW-UP APPOINTMENTS AND/OR SCANS? I always try to remind myself what is TRUE. It is so easy to get caught up in worry and let fear cloud your judgement. I talk myself through what I’ll do if I get bad news. It will suck, I will cry. But I’ve gotten through it before... many times. I will put back on my armour and head into my next battle. My family will stay with me. They will be by my side. I’ve really had to relearn worry. Contrary to popular belief, if you worry about something, it could still come true. Let it wash through you. Acknowledge it, and move on, making way for another emotion to come. I also really like to play out what it would be like to have my doctor give me good news. What he’ll say, how I’ll act. Mostly I do this in the car so that people don’t think I’m nuts for crying happy tears.

THERE ARE SO MANY TOUGH DECISIONS TO MAKE WHEN DEALING WITH CANCER. WHO HAVE YOU BEEN ABLE TO TURN TO FOR ADVICE? I have a great therapist who I saw weekly during treatment. At first I thought since she hadn’t really had extensive experience with cancer that she wouldn’t be a good fit. What I didn’t realize is that a therapist can treat a cancer patient just as she would treat anyone with PTSD ( post traumatic stress disorder). Cancer and treatments are your trauma. We work through something new every week. We often have to revisit issues because a solution that worked 3 weeks ago is no longer doing the trick. It’s helpful to be able to turn to her because she is a third party- she will not be scared by my deepest darkest fears as my family would be. I can unload unto her all of my worries without concern of her well-being.

WHAT HAS BEEN THE MOST HELPFUL FORM OF SUPPORT YOU HAVE RECEIVED? My best friends and my family threw a benefit called Live. Love. Lauren before I went in for my stem cell treatment. That combined with another yard sale fundraiser, my home town raised close to $20,000 for me. It made it possible for me to be out of work for 9+ months, paid for preserving our fertility ( along with Livestrong’s Fertile Hope program... which is AWESOME), helped pay co-pays and deductibles, travel expenses to Boston, and paid for my meds... I am ever so grateful of the kindness shown to me by everyone who donated.

SOMETIMES PEOPLE CAN UNINTENTIONALLY SAY THE WRONG THING. HAVE YOU EXPERIENCED THIS? IF SO, HOW DID YOU HANDLE IT? UGH. The dreaded “It’s going to be okay”. Every time someone says that to me I want to punch them, and I’m not even a violent person. Listen, it is the opposite of okay. I’ve got frigging cancer and am fighting for my life while my friends are busy going to bars and worrying if their new flat iron is really as good as their old one. Usually it’s best to be honest and say, “you know what? It certainly doesn’t feel okay, so can you just assure me that you’ll be there for me, no matter what?” It’s not their fault. No one knows what to say when cancer rears it’s ugly head.

HAVE YOU LEARNED ANY BIG LESSONS ALONG THIS JOURNEY? I think I’ve learned the meaning of life... my life, that is. It’s picnics on the beach, sun warming my skin, the smell before it rains, a kiss that makes my belly flip, holding a newborn, cry laughing, the feeling of grace after church, that tingly feeling up and down your spine when you get a massage, having your kitty greet you with a mew and purr...

HAVE ANY OF YOUR PRIORITIES IN LIFE CHANGED SINCE CANCER? ALL of my priorities have changed.

WHAT MAKES YOU FEEL BETTER, GIVES YOU JOY AND HOPE? Turning my fears into prayers. For example, when I’m nervous about a scan I pray for patience, strength, and courage. It’s an opportunity to transform energy. I also hold within my prayers visions of hope - love, teaching, the relief that a clean scan will give, what Tim and I’s future house and babies will look like... :)

HAVE YOU ATTENDED ANY SUPPORT GROUPS? WHY OR WHY NOT? I’ve attended a Young Adult cancer support group about 40 minutes away. It’s a bummer that there isn’t one closer. I always feel stronger after seeing other people like me. It’s also the only place where its appropriate to laugh out loud about cancer. When I laugh about it with cancer free friends or family they sometimes feel as though it’s not something not too fool with, as though it would be bad luck or something... but other cancer patients have similar senses of humor as me and it feels good to let loose with them. Sharing stories of pulling the cancer card is always a good hit at the group!

HAVE YOU PARTICIPATED IN ANY ALTERNATE THERAPIES OR METHODS BENEFITING YOUR OVERALL WELL-BEING? IE: ACUPUNCTURE, MEDITATION, HEALING TOUCH, REIKI OR OTHER? All of the above! As I said, cancer is a trauma, and you need to heal your soul along with your body.

HAVE YOU CHANGED ANYTHING IN YOUR LIFESTYLE SINCE BEING DIAGNOSED? I’ve tried (and failed) to cut refined sugars out of my diet. I’m a work in progress.

ANY TIPS FOR OTHER SURVIVORS? You’re NOT ALONE. Listen to the Mumford and Sons song, Timshel. Reach out and there will be a hand to take. Connecting with others will make you feel so much better.

ANY TIPS FOR THE PRIMARY CARETAKERS? Communicate and ask for communication. When you find out what you can do to help a cancer patient feel comfortable you will feel more in control of the crazy journey of cancer.

ANY TIPS FOR FAMILY AND FRIENDS OF CANCER SURVIVORS? Offer a specific way that you can help. Say: “ I’m going to the grocery store, what do you need?” or “Which day would you like me to come to chemo with you?” Saying that you’re there for someone isn’t enough in this situation. They are overwhelmed and humble and it is awkward to ask for help, so make it easy for them to accept it.

YOUR MOTTO / MANTRA OR FAVE SAYING:
Fluctuat Nec Mergitur. It’s a Latin phrase that means: “ She is rocked by the waves but does not sink” I’m waiting on my Dr.’s ok to get it tattooed!
I also love the quote: “ I will hold myself to a standard of grace not perfection”

YOUR WEBSITE WHERE READERS CAN FOLLOW YOUR STORY:
My blog for young adults with cancer is: http://graceundercancer.wordpress.com/
I made it to tell other young adult survivors what they can do next in this crazy mixed up cancer journey. I want them to share their story along side mine and together I hope to learn, grow and move forward.

Thanks so much to Ashley for this interview. Reflection can really help open your eyes! Much love, my survivor sister.

The Blame, Shame, Guilty Game

2013-03-21T20:15:00.001-07:00

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

The Good

1. My ultra sound on my reconstructed side came back clear. It appears to be just built up scar tissue in there. No cancerous lumps. Whewwww!

2. My reconstructive surgery has been scheduled towards the end of April! Hooray for fake nipples! ...And it's earlier than originally anticipated too. Very thankful to be getting in sooner than... Fall. Which is when they were planning to schedule me. I had thought it was going to be May-ish but it turns out Dr. Van Awesome is one busy plastic surgeon and is booked through until after the Summer. Luckily I was squeezed through.

3. I met a woman who is 10 years out from her original breast cancer diagnosis. She was 30 when she was diagnosed. And has since had one daughter and currently another one on the way. This news gave me hope. I had yet to meet someone else who had been through this as young as I am and is that far out from treatment. To hear that she is doing well and healthy 10 years later was so uplifting. There is hope people!

The Bad

1. On a totally opposite and sad note: I have been hearing of more and more friends and friends of friends who have had recurrences recently. It makes me very sad. Angry. And scared. All I want to do is take it away for them. It just seems so unfair that after everything people go through with treatment they end up having to deal with a relapse. It is devastating.

2. In more upsetting news: Recently a breast cancer blogger named Lisa Lynch passed away at the age of 33. She was one of the first breast cancer sisters I started to follow online after my own diagnosis. I even read (most of) her book... The C-Word... Lisa was another young one like me diagnosed at 28. I believe she had a recurrence a few years later that had spread to her brain. So horribly sad. I can only imagine the heart ache her family feels. It is just awful.

3. More in the department of Ashley's bummer emotions: I have been feeling guilty lately. Not a healthy thing, I know! Which brings me to...

The Guilt

No one tells you about the poisonous emotions of guilt and shame that someone with cancer might feel at any point during their 'journey'. But here it is, happening to many of us who have gone through cancer. And it's happening to me.

I'd like to say first off that I realize that guilt is a useless negative feeling that no one should have. I don't like feeling it and I am working on evicting the bastard. I also have learned that it is a common emotion for people who go through something like this. That, in itself, made me feel a little less crazy for having such guilty emotions. Once again, my feelings validated and I am not alone!

So - Why might a cancer survivor feel guilty? Here is a running list of my own issues around guilt in no particular order...

Guilt around getting cancer in the first place. I know I am not supposed to blame myself. But there is a part of me that does. I wonder what I did. What I exposed myself to. What I should or should not have been doing. I eat some ice cream and feel bad and wonder if it is going to contribute to a recurrence. I wonder if I shouldn't have had those mid-week cocktails before I was diagnosed. Or if I just wasn't doing a good enough job of taking care of myself. There are also people out there who try to ask me what I did differently. So they can know what it was I did potentially wrong (so they know what to avoid). Nothing like making me feel awesome and even more to blame than asking what I did different! I have had people point out that it was soy protein that did it. I have had some people say it was all of the grief and disappointed I carried around in my chest. I once had someone tell me that I probably didn't eat enough grilled foods with charcoal as a child and that is why I ended up with cancer. Yes. Because blackened carcinogenic morsels of deadliness are sooooo fricking healthy.
Guilt around all of the kindness and generosity from everyone since cancer and during treatment. I feel like I owe people something for all of their hard work and efforts to making my time during chemo smoother and more comfortable. All the time people gave to be with me during the difficult times. All the meals, clean ups, help with our move, the cards, flowers, emails, rides to appointments. I wish I could repay people but I know it is not expected. If roles were reversed I'd be there to help them too. This, I know.
Guilt around financial help. I so appreciate all of the assistance we had. But I feel shame. Like it was wrong for asking and accepting help. Like I should have waited until I REALLY needed it. I recently watched a good TED talk on this fear of asking for help and feeling shame notion. It was a good slap in the face! Maybe I should watch it again.
Guilt around being angry, jealous and envious of other people. Not much more to say on that subject. It's shitty to be feeling that way. And apparently, as I am reading in the book Picking Up The Pieces, it is quite common to feel all of these things.
Guilt around not working. For real, once upon a time I actually used to work! I probably haven't mentioned that on my blog at all until today. I know that it's not like I am needed at work...they are not in a lurch by any means. And people are not pressing for me to return like some cancer buddies I have met whose bosses are on them the minute they finish treatment. But just the very fact that I am still taking time to recover makes me feel bad. I feel guilty for taking so long to heal and to find my new sense of normal. I think because Mike was laid off and we have been having to watch our nickels and dimes since October doesn't help with this not-working guilt either.
Guilt around surviving. Yep, I said it. I look at one person who passed away and wonder why I have made it to this point. I feel bad when I meet someone who has something that seems worse than my own case. I can't help but feel like it would be wrong to say "I am supposedly cancer-free" after hearing someone tell me that they have an incurable type of cancer. I feel bad when I hear of a friend who has relapsed. And I feel like their families wonder why their son or daughter died? And not someone else's? Even though that it isn't probably true, it is totally something that crosses my mind. And when someone else has worse side-effects, it minimizes the feelings I had of my own... making my experience seem 'not as bad' or not as big of a 'fight'. This lovely guilt category is what is known as Survivor's Guilt. Yes, it's actually a thing.
Guilt around not being able to give much of myself or think beyond my own care. Sometimes I feel like just getting out of bed, feeding myself and carrying on with the day is an effort. Doing every day errands or daily tasks that would normally be done without a thought are met with a feeling of dread and helplessness. And then I feel bad that I wasn't able to make the baby shower. Or that I couldn't do the favour someone needed. Or that I wasn't productive enough to make time. Or that I don't know how to be there for someone else who is needing me. The reality of it is: How can I possibly offer up any kind of support to anyone else if I can't even help myself? This kind of guilt then leads me to...
Guilt around needing so many months to recover. I know it takes time. I know this is all normal and expected, says my oncologist and countless amounts of fellow survivors. I am a returned soldier who has PTSD and can't quite assimilate back into home life. I get tired after walking for half an hour. I don't have the energy for too many things in one day and I feel burnt out if I take on too much. City trips are frequently met with complete dread because I know how exhausted I will be by the time we get to Horseshoe Bay on the way back. I can't help but feel pathetic about the fatigue and emotional stuff. How have I not bounced back yet!? On one hand I find myself explaining to people that I am not physically, mentally and emotionally 'better' yet... but yet I deep down expect it of myself at the same time! And don't get me started on the day-to-day stuff. How have I not sorted out some kind of happy routine where I am feeling back to normal? (Whatever normal is at this point!) Which then is followed by...
Guilt around not living life with the zest and passion I dreamt about during chemo. I know I am doing my best, but even that seems like it is not enough. There are some weeks I feel like I am doing too much (and am told this by others, even people I have just met!) But then there are weeks when I slow down, I feel guilty for not doing enough. And then I shake my head that I am even fretting about it all in the first place, because I wasn't gonna be hard on myself and I wasn't going to sweat the small stuff anymore if I made it through! I was gonna live freely, with joy, peace and excitement for my life! I sound like a broken record on the whole 'post-cancer-life' dilemma, but I can't help but still bring up the huge let down that it is. And I know someone who hasn't been through a serious illness before might think I sound a little ungrateful. Which then, I feel guilty about of course! To clarify: I absolutely am grateful. It's just that I am stuck in this void right now trying to move forward into a balanced life... Where I don't over-think things and I find myself having a day where cancer doesn't pop into my mind every hour. That would be nice!
Guilt around not being MORE grateful. "Aren't you so happy you survived?" "Aren't you so excited it's over?" "Aren't you so happy you only had to do one mastectomy?" "Aren't you so thrilled to be BRCA negative?" "You must be so happy and proud to call yourself a survivor." "You must feel so lucky." "I bet you have such a greater appreciation for life and must feel so much gratitude now." Talk about pressure people! ...I was gonna go on a bit of a wild rant at this point... but have decided best to leave this one unsaid.
Guilt around being still so involved in the cancer world. I am not talking about treatment or the follow-ups, those are a must. I am talking about the advocating roles, the studies, the support groups, the volunteering, the peer support, the young adult cancer retreat, the after-care involvement, the books, the articles I read by choice, the Twitter-based breast cancer 'gatherings', the Instagram #breastcancer hashtag searches... all of it. While this stuff is therapeutic, helping me and getting me into a better space, it also makes me feel bad for being so IN it still. Like I should have moved on by now and started socializing more outside of the cancer realm, meeting friends for tea or going on a mini getaways with non-cancer people. (Which by the way, takes so much energy that I, more often than not, will not initiate...see reasons given above around energy and lack of effort)
Guilt around needing to still talk about cancer. To Mike, friends, family, my therapist. The whole bunch of them! I know not everyone still wants to hear about my cancer stuff... Heck, it's been close to 15 months - cancer talk is getting stale at this point, even I am tired of feeling the need to talk about it. But not everyone cares that I am getting my nipple. Not everyone cares to hear about how depressed I felt on any given day. Or how scared I am still. Having this cancer experience makes it such a huge part of my life right now. It difficult to not talk about it because it is still taking front and centre stage. Which in turn makes me feel bad. Like I shouldn't need to bring it up anymore. Everyone else has moved on. Why can't the girl who had cancer move on? I know I won't always be the emotional cancer girl. But right now this is a space I am still in and am not quite able to move on from.
Guilt around not being my old self for the people that expect it. I know I can't go back to the old Ashley. It's impossible. But I have felt at times that some people are waiting for her. And I hate to break it, but she no longer exists. Sadly, cancer does that. And I know it's not all doom and gloom... a happy cheery ME is in there somewhere... It's just a work in progress right now. Be patient with me please! :)
Guilt around being such a mess for Mike. He puts up with it all. He deals with my irritability, my sadness, my crying from nightmares, my insomnia, my worries, my fears, my anxiety. The poor guy deserves a flipping award for "Most Patient Male"! He is seriously thee most kind and caring guy a girl could ask for. I am so fortunate. I am so lucky. I am so fricking glad to have him in my life and know that he is still along for the ride with me.

I think that does it. Getting all of that out feels both liberating and exhausting. But I really feel I have now acknowledged the individual aspects of guilt and am ready to try to push passed it.

With Spring starting now, this season marks new beginnings anyway. I need to start washing myself of the negative self-blame, shame and say adios to the rest of these really pointless saboteur-like head games of emotion.

ashley blair doyle

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

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

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 aboveBrian Shirts, MD, PhDAssociate Professor, Department of Laboratory Medicine and PathologyUniversity of Washingtonshirtsb@uw.edu

PALB2 c.2835-282_3113+1377del

The last 4+ years: My MBC Unplanned Life

Lessons from the Lavender Farm

Five Years

Summer of Loss

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

And Then I Didn't Blog For 6 Months

Is This Real Life?

It's Been 2 Years, Happy New Year

Dear 2013 & A Note To 2014

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.

How I Use Facebook to Talk About the Reality of Cancer

More Than Pink

Just When You Start Feeling Like You're Finding Normalcy

Time Flies When You're Not Doing Chemo

Best. Day. Ever.

A + M = Together, We Rule

Life Update: Part 2

A Little Detour

Life Update: Part 1

There's Beauty In The Breakdown

First Chemo Anniversary & First Flu Since Cancer

Kicking Cancer Interview: Lauren Trigge

The Blame, Shame, Guilty Game

_____

Email: to confirm from website above

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