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.
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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 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
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