Author: emmavivan89

It’s been a good long while since I’ve updated this blog. This wasn’t a conscious decision, but I think as there was a slow down in new information I was naturally less inclined to sit down and spill my guts in a thousand words or less. (Who am I kidding, it’s always more than a thousand words. Sorry everyone!) I have found that, usually, there were two reasons for which I might write a post; to inform loved ones about what was happening with my treatment plan, or because I was really f*cking pissed off about something. Both are rather motivating reasons, and luckily I suppose, they seem to have been occurring much less. The obvious question that you might be asking at this point is, “Hey Emma, for what reason are you writing this post today?” and my answer would be, “Well reader, a little bit of both!”

I’ll start by saying that sometimes I get really sick of talking or writing about cancer. I feel like people might be bored of hearing about it, too. I wonder if people sometimes think, “We get it… you have cancer! No need to show off!” And I would honestly quite like to have something else interesting to talk about. I’d like to feel I have an identity as something other than a cancer patient, but the reality is that the last year and a half of my life has been completely dominated by cancer. And really, not much else is new.

One piece of good news is that last Friday I had my final session of chemotherapy. It was my TWENTIETH time sat in a plushy reclining chair getting all pumped up with poison. It was an odd, joyful, sad day. I doubt I’d be able to count up the hours I’ve spent at my treatment centre, and in a way, it has become a second home, not least of all because the nurses and doctors there are like my extended family. I have felt very loved and taken care of. I have felt valued and understood. These people have laughed with me on my best days and cried with me on my worst. That is not a manner of expression. On one particularly hard day when I was really sick and struggling very much, my nurse simply held my hand and cried with me. How do you thank someone for that level of love?

 

 

Of course, there is an elephant in the room, and his name is Count Coronavirus. He’s a bit of a bastard and he’s totally screwed over everyone’s plans for the year! He also has made it so I’ve had to go to all of my recent appointments and treatments on my own, including my final chemotherapy session. I won’t pretend that this wasn’t hard. I don’t like going to appointments on my own, not least of all because I am always the youngest person in the room and this does, unfortunately, elicit stares of pity which I find upsetting. However, everyone is on their own right now and this makes it a little easier; there’s a sort of ‘in it together’ attitude in which one feels emboldened to give a respectful nod to the poor sod hooked up in the adjacent chair. But, it was a real shame not to have Bret with me for my last infusion. After a year and a half of hurdles, it was lonely to jump the last one on my own. Having said that, I am exceedingly well-loved by my beautiful husband, who put together a book of messages from friends and family to read whilst I was having my chemo. Thank you to everyone who contributed! I also received cards and gifts and letters and flowers and it felt a bit like having a second birthday! Hey, I got away with having two wedding days, why not two birthdays? Maybe Queen Elizabeth II is on to something!

 

 

Anyway, Count Coronavirus is a total shitter and I’m sure we’re all bored of talking about him. I don’t want to write too much about the whole sorry mess, but my gosh, I will say that the cancer patients could not have been more prepared for this situation! We’re already terrified of germs, barely leave the house, obsessively wash our hands, and are always cancelling long-standing plans for fear of infection. Cancer is basically coronavirus Bootcamp! I’ll be honest… when the lockdown orders first went into place, I did feel a little bitter about everyone complaining. It felt a bit like everyone was shitting over the way I’ve had to live my life for the past 18 months. “If only you knew how lucky you are,” I wanted to say. “All you have to do is stay home for a while, and you don’t even have to do it while dealing with constant nausea and crippling bone pain!” But, I know this is unfair. Everyone’s lives are in turmoil. Everyone’s plans and dreams and hopes are on hold. Many people are losing loved ones or are in fear of losing their own life. People don’t know how they’ll pay their rent or their mortgage. But of course, you know all this. The past few months have been a real display of how fragile our existence is. How much we take our happiness for granted. I’d learned those lessons well enough on the day I was diagnosed. I would have just skipped cancer if I’d have known there’d be a make-up test in 2020!

There’s a chance that my final surgery will be rescheduled soon (having been cancelled because of coronavirus) which is great news as I’m anxious to have the reconstruction completed. I am a little apprehensive, as I don’t want to risk being exposed to the virus and I’ll have to go to the hospital on my own, as only patients are allowed inside the building. My treatment plan will be progressing again, as I’m about to start a new drug which I’ll take for a year. It comes in pill form and is supposed to have some nasty side effects. Most people don’t last the full year on it, but I figure it’s worth a shot for any chance to lower my recurrence risk, and I believe myself to be fortunate to have the option of having this new treatment at all. I will continue to go to my cancer centre once a month for my hormone shots, and I’ll have regular follow-ups with my oncologist and surgeon, who are monitoring me closely. Even though chemo is over, it doesn’t feel much like it’s behind me. It doesn’t feel like I am ‘done.’ My life will always have been changed and I’ll always feel like a cancer patient. Maybe that’s OK.

I won’t pretend that I’m not angry about the ‘misplacement’ of this year. I feel it on a very personal and selfish level. I was ready to move forward with my life. I was ready to no longer be held hostage by health. The holiday that Bret and I had planned to Japan to celebrate finishing chemo was cancelled. The charity bike ride I signed up for was called off. A trip to San Francisco was rescheduled. There are no drinks of celebration with my friends. And on my worst mornings, I do wake up and think ‘what is the point in getting out of bed?’ I feel sad and angry and resentful. My brain plays ‘why me?’ on repeat. I always get up anyway, although sometimes a little later than perhaps I should. I have been trying to keep active and keep to a routine. Some days are much better than others, and some days I hold on stubbornly to the pain. It doesn’t feel great, but I think it’s OK. I believe that things will get better soon. I have hope that I’ll be happier when the plans I make start coming to fruition. I remind myself I am lucky in so many ways. As people are so very fond of saying, this too shall pass!

With love and best wishes for everyone’s health,

Emma xxx

Recently I’ve been thinking a lot about the idea of ‘luck’ and, specifically, how it does or doesn’t pertain to the past year of my life. I believe that one of the first questions a cancer patient asks when they receive their diagnosis is, “Why did this happen to me?” I know I asked that question repeatedly for many months and on occasion I still ask it now. The monologue that I found myself giving to anyone who’d listen was principally focused on how this especially shouldn’t have happened to me; I’m far too young and fit, I’ve always eaten very healthily, and I have very little family history of cancer. I just couldn’t wrap my head around what had happened to me, and it made it all the harder for me to be continually hearing the advice doled out regarding how to lower recurrence risk because such guidance always involved things I had been doing long before my diagnosis. To me, my diagnosis felt like a horribly unlucky thing to happen and I’m sure there are plenty of people out there who would agree with me. The awful thing about unluckiness is that there’s not really much you can do to take back control.

A very short time after my diagnosis, when I was in the initial onslaught of treatment and terror, I was told by somebody I don’t know all that well that I was incredibly lucky. They said this with complete sincerity, and although I’m sure they meant it with the best of intentions, it greatly upset me. I was really hurt that they could even think that (let alone say it) and that they didn’t see me as the utter wretch I felt like. If I’m being honest, I wanted people to feel sorry for me and I’m not sure that there’s anything wrong or abnormal about that: who doesn’t need compassion and kindness when they suddenly find themselves attempting to navigate their way through a very real and hideous Hell? I was faced with over a year of chemotherapy, multiple surgeries, the loss of my breasts and in reality, the loss of my entire life as I knew it. Conversations with my husband suddenly shifted from saving for a house deposit and starting a family, to how we’d afford to pay for treatments and preserve my future fertility. Obviously cancer is never a fair thing to happen, but this all did feel so very unfair.

I don’t think I’ll ever be someone who says that their cancer was a blessing (although obviously I’m very pleased for people who are able to feel that way) but of late I do find that I can’t stop telling people how lucky I am. Don’t get me wrong, I don’t in any way feel that I’m lucky to have had cancer but the more I carve my way through this journey, the more I’m forced to take stock of all the things I have to be thankful for. This was made all the more apparent to me when a few weeks ago I lost one of my dearest childhood friends to breast cancer. Many of you reading this blog will also have known and loved her and for that reason, I feel you will know that there are no words I could write that would do her justice. But, for those of you who did not know her, she was a fiercely smart and strikingly beautiful young woman who was neverendingly caring and loyal. She leaves behind her husband and two gorgeous little children who were her whole world. Those of us who knew her are grappling with the reality of her being gone; with her having done so well with her treatment and then suddenly having an incurable recurrence. The cruelness of it all smacks me in the gut and at times, makes it hard to breathe, but the thing is that my friend was one of the bravest people I’ve ever met and I feel I just have to do her justice in how I choose to face my own diagnosis. I have to honour the woman she was; the friend who let me live with her for a year in her tiny room in student halls because I didn’t know what I was doing with my life, the person I could always count on to tell me when to man up (and still do so with love), the mother who when faced with the devastating news of her illness thought only of her family and how she could support them.

So you see, I am lucky. When I tell people that I feel lucky, I really and truly mean it. I am lucky that I’ve had the best treatment money can buy because my friends and family were so kind to support me through my Gofundme page. I’m lucky that so far I have been able to make it through my chemotherapy and immunotherapy infusions without any delays or complications. I’m lucky that my husband works from home and took care of me 24/7 during the worst stages of my treatment. I’m lucky that he then took me to Maui to celebrate finishing my hardcore chemo back in May. I’m lucky that on Friday I will get to watch my older brother marry the loveliest, kindest woman whom I know he completely and utterly loves. I’m lucky to have known a person as beautiful and loving as my friend. Most of all, I’m lucky to even be sat here typing these words, because I know in my heart that nothing is promised, and nothing is certain.

With much love,

Emma xxx

Hi everyone,

Well, it certainly seems a long time ago that Bret and I came back from Maui! This terribly overdue blogpost is an update on where I am treatment wise. I realise that I haven’t put many medical details in my recent posts, and I know people have been curious about how things have been going and what the next stages of my treatment plan will entail. Also, sadly I have not had any further life enhancing encounters with turtles or any other creatures, seafaring or otherwise!

***SPOILER ALERT*** – Please be aware that this post includes gross descriptions of surgery.

I’m pleased to say that my operation in May went very well. When I met with my breast surgeon several months ago to discuss options, I was given the choice of having a ‘lumpectomy’ (having just the tumour and surrounding tissue removed), a single mastectomy, or a bilateral mastectomy. There really were a lot of factors to take into consideration with each of these options and I did a lot of research and soul-searching about what felt like the right choice for me. Ultimately, my surgeon and I both agreed that it would be prudent for me to have a single mastectomy, at the very least. There were a few reasons that we felt this would be appropriate over a lumpectomy. Firstly, if my surgeon were to do a lumpectomy and remove as much of the surrounding breast tissue as would be appropriate for my initial tumour size, I wouldn’t get a very pleasing cosmetic result. Secondly, if I were to do a lumpectomy I would have to follow that with 6-8 weeks of radiation therapy. I wanted to avoid that if possible because it would have permanently damaged my skin and also because I feel that as I’m only 30 I would like to limit my exposure to radiation at this time. Who knows if I might need to have radiation therapy at a later point in my life? Although obviously… I bloody well hope not!

The next decision to be made was whether or not I would just remove the right breast, or if I would remove both. It goes without saying that this was an incredibly hard decision for me and one that I spent a great deal of time contemplating. It was explained to me that if I were to remove my left breast, it would only reduce the chance of me developing a second breast cancer later in life; it would do nothing to lower the risk of my current cancer recurring. I did not test positive for the BRCA (breast cancer) gene, where a bilateral mastectomy would be considered necessary. However, having been diagnosed at only 29 years old, medically speaking I am a complete outlier. No one can explain why I might have got the cancer, and therefore what my chances might be of having a second (new) breast cancer at another point in time. I honestly felt like I couldn’t see my own situation reflected in any clinical studies or research articles that I found, and it is very unusual to get breast cancer so young and to not at least have the gene to explain it. At this point it’s worth noting that apparently most young women diagnosed with breast cancer opt for a bilateral mastectomy. Doctors believe that this is mainly due to the peace of mind many women feel at having their breast tissue removed, even when the statistics don’t necessarily show that much of a benefit. Again, my breast surgeon and I agreed that if I didn’t remove my left breast now, it would probably be sensible to do so at some point down the road, perhaps after I’d had children as with this course of action I’d still be able to breastfeed. I strongly considered this idea and for a while that was the road I thought I’d take. However, as I got closer to the surgery date, I just felt the decision wasn’t sitting right with me. I’m pretty distrustful of my body right now and to be honest I’m terrified of what might happen in the future. In the end, I decided that it didn’t make sense to hold on to the hope of being able to breastfeed, because really the important part is living long enough to get pregnant! So, I decided on a bilateral mastectomy with what is called ‘immediate reconstruction’. Admittedly, it’s not really all that immediate as it does require a minimum of 3 operations.

After deciding on my surgery plan, I was put in contact with a wonderful plastic surgeon to discuss all the reconstruction aspects. Again, there were so many choices to be made that I won’t bother detailing them all for you, but instead will just explain the process I am currently going through. Firstly, I had all of my breast tissue removed during my surgery in May. I was immensely lucky that due to the placement and size of my tumour, I was able to keep all of my skin and my nipples. My surgeons placed the two incisions in the natural creases underneath my breasts, which means that once they’ve healed they shouldn’t be too noticeable. It was from those 4 1/2 inch incisions that my surgeons then did all their work, which is incredibly impressive when you consider that breast tissue actually stretches all the way up to the collarbones and up to and slightly behind the armpits. I tried to find a photo on google to demonstrate the anatomy of breast tissue, but they were all pretty gross… do feel free to search this on your own time though! (Whilst you’re at it, search ‘surgical drains’ if you’d like a true sense of the hell I was in for two weeks following surgery. I felt like some kind of dystopian dairy cow!) After my breast surgeon removed the breast tissue and my sentinel nodes so that they could be biopsied, my plastic surgeon then attached temporary expander implants to my chest wall. These expander implants are slowly inflated over the course of several months by inserting a needle through the skin and into the expander to inject them with saline. I have already had two of these ‘boob pumping’ sessions and I can confirm it feels as weird as you’d expect. It’s as if I am a living balloon animal!

Once this process of expanding is complete, I will then have my second surgery which involves opening back up the original incisions and switching out the temporary expander ‘robo-boobs’, for some lovely less oddly-shaped silicone ones. At the same time I will also have some fat grafting, which is where fat is removed from another area of my body via liposuction and injected into the breast area. The reason for this is that without the natural breast tissue to cover the implants, they look a little unnaturally shaped and sometimes you can see the surface of the implants rippling. Finally, I will have a third surgery to have additional fat grafting, as often the fat from the previous session won’t have all stuck around. So, that’s the update on surgery… quite frankly, I’m exhausted just typing it!

The plan had always been that after my first surgery I would have 14 rounds of a drug called Herceptin. This drug has been painstakingly developed to specifically target the HER2 growth receptor that my cancer exhibits, therefore lowering risk of recurrence. However, after my surgery the pathology tests were re-run on the tumour that was remaining in the removed breast tissue. I’ve been told that my pathology results were very good, but unfortunately I did still have residual cancer left in the tumour bed. Having said that, the tumour had reduced from 3cm down to 0.5mm, so my oncologist was very pleased! Honestly, I had really been hoping for a complete response to the chemotherapy due to the fact that my cancer is aggressive and responds very well to chemo, so I won’t pretend that the pathology results weren’t a bit of a blow. On the other hand, this result does mean that I have access to a brand new state of the art drug, which is essentially Herceptin mixed with delicious chemotherapy. So, I’ll be having another 14 rounds of chemo over the next 9 months! This new chemo should be a walk in the park compared to the old one I had, as it doesn’t indiscriminately attack all the cells in the body like normal chemo, but only the cancer itself. (My chemo nurses jokingly refer to it as organic chemo!) I had my first round a few weeks ago and although I did get sick, it certainly was not as bad as regular chemo. So I’m holding out hope that I continue to do well on it and that I’m able to get through the next 13 rounds. Finally, the very good news was that my sentinel nodes were clear, so definitely no radiation therapy will be required and my recurrence risk should be a little less.

The final aspect of my treatment is to suppress my oestrogen levels for 5-10 years, hopefully taking a break at some point so that Bret and I can have a cute chubby baby. The reason for the hormone suppression is that my cancer feeds on oestrogen, so we’d like to cut off its food supply to make it much harder for it to grow back. As I am obviously pre-menopausal, this means I have to have monthly injections as well as take daily medication in order to keep my oestrogen levels low enough. I started this new regiment a few weeks ago, and so far it’s been manageable. My main complaints are joint pain and acne. Hopefully the acne will go away as my hormone levels settle down, and if the joint pain continues or worsens, there are different drugs that I can switch onto. I’m still trying to keep active though and have been doing short bursts of yoga at home to try and rebuild my strength from the absolute barrage of saviour poison I’ve endured.

And that’s all for now! Thanks again to everyone for their love and support. Bret and I couldn’t have got through the last 7 months without you all.

With love,

Emma xxx

Emma’s Gofundme

Pretty much the day I got my diagnosis I said to Bret that I wanted to get a dog and that I wanted to finally go on our honeymoon. And, I am happy to share that we are now the very proud owners of… some quite shocking sunburns, courtesy of Maui! (I’m still working on the dog). A fun fact about my husband and I. After 8 years of being together, we’d never been away on holiday just the two of us. The truly wonderful thing about being an immigrant, is that you always have friends and family to visit. But that has meant that romantic trips for the two of us have never amounted to more than the odd night staying at Airbnbs in rural California. On one such trip we accidentally wandered into a rattlesnake suburbia and on another we discovered a camera inside the apartment on the day we were checking out. In short, we did not have a great success rate. Anyone who has ever met me will probably have heard my now relatively well-polished bit about us never having had a honeymoon… how is it we’ve had two weddings, but not even one measly honeymoon? Moving to the land of perpetual road-rage does not in fact equal a honeymoon… especially if you have to deal with the DMV and the fine folks down at the Social Security office.

I had my sixth and final chemo treatment on April 11th. In all honesty, it seemed a momentous occasion for everyone but me. It’s hard to be optimistic about having a final treatment when you know that it will make you incredibly ill for at least the next three weeks. It also seemed to me like the end of the battle, with the war yet to be won. I have three surgeries on the agenda with the first coming up soon on May 23rd, as well as 11 immunotherapy treatments and at least 5 years of hormone suppression. I’m literally a walking pin cushion! This is not to say that I’m feeling despondent though, I’m actually feeling pretty bloody great. My parents flew out to be with me for my last chemo, and my absolute angel chemo nurses surprised me with flowers and a card, so it was of course a special day! Although having said that, it’s a day I can barely remember due to the pretty potent mix of Benadryl and steroids I am always given. My Dad says I spent the final five minutes of treatment basically doing a stand up routine for the ‘Chemo Lounge’. It is a real testament to my family’s strength of character that they didn’t record that for future blackmailing purposes!

So, two and a half weeks after my final chemo, with my ankles still persistently swollen, Bret and I boarded a plane to spend ten days in Maui. We did a lot of exploring, a lot of walking and a lot of eating. It is now that I’ll admit that Maui was a strange choice, due to the fact that I am totally and utterly f*ucking petrified of the ocean. I haven’t done more than reluctantly tip my terror-stricken toes into the surf for nigh-on ten years. This fear comes mainly from watching ‘Jaws’ at the age of 11 and having had gruesome nightmares ever since. It also comes from the fact that the ocean is just so God Damn powerful! I don’t understand why anyone would want to willingly spend time in a place that seems pretty much designed to kill you. Having said that… I really, really, really wanted to see myself some turtles. Bret and I spent several days driving all the way to various different beaches only for me to declare that the water was too murky, or the waves were too big. We happened to be staying at an Airbnb that had snorkels and beach chairs for you to use, so on the final day of our holiday we resolved to give it one last shot and headed out to a magical beach I’d read about, where turtles were supposed to be aplenty. After arriving at the beach, we scrambled over some rocks to the side of the beach that was promised to be a peaceful haven and we found that the water was beautiful and clear. We took our snorkels and headed to the surf. I was feeling reasonably confident as Bret guided me out past the waves with the kind of love one might give a newborn puppy (this was of course 100% needed). By the time we got far enough out that my toes could no longer touch the sand, I found myself on permanent 360-Degree shark watch and suddenly had a full blown panic attack. Wearing a snorkel. At age 30. Feel free to laugh at the ridiculous mental image of a ghostly pale, slightly bald, fully grown woman hyperventilating through a snorkel whilst standing in the most mesmerisingly clear and calm water you’ve ever seen. And then just at that moment, when I sorely needed a reminder of my own insignificance, a turtle swam past. The most beautiful, gentle, calm creature I have ever seen came within a foot of me. And then five minutes later another one ambled past. And then another. Suddenly I went from being on 360-Degree shark watch to being on 360-Degree turtle watch. I wasn’t scared anymore. I smugly declared to Bret that I wanted to see ten turtles by the end of the day and I found myself spending hours in the water simply enjoying myself (hello sunburn! In all seriousness though, I’m very embittered about this sunburn… it was totally our fault for not reapplying lotion and I won’t be making that mistake again in a hurry, I can tell you!) I watched one turtle swim from the ocean-bed up to the surface where he took a quick breath of air. It seemed funny to me that I didn’t want to go in the water for fear of drowning, and yet there are actually mammals who spend their whole lives in water. There’s a great metaphor there somewhere… I just haven’t figured out what it is yet.

At some point, I took a break from the waves and sat on the beach watching Bret swimming in the surf. I suddenly became very overwhelmed with pride for being able to overcome my fears of swimming in the sea, and of course for handling all the other crap from the past six months. If I hadn’t pushed myself, I would have never known the joy of seeing those turtles. It struck me that there was real power in my happiness. The delight I felt at watching these animals completely washed away my fears of drowning or of being attacked by some unseen creature. And I really can’t think of a greater parallel to living your life after a cancer diagnosis. There is so much fear that it is crippling at times, but it’s only when you focus on all the beauty that this world has to offer, that the fear begins to diminish.

Much love,

Emma xxx

*Just out of frame… small dog wondering why on earth I’m balancing a pizza on top of my head…

(I had no answer for him)

Not too long ago, I was terrified of turning thirty. Birthdays naturally lead one to evaluate their life and all the decisions they’ve made up until that point. A 30th birthday brings with it all the usual apprehension of such a milestone and then some! For me, and for many people I’m sure, I viewed my twenties as a time of youthful exploration and I saw my fast approaching thirties as a call to ‘settle down’. In fact, Bret and I had always agreed that our turning thirty would mark the time for us to start a family. I have always been very excited at that prospect, and yet for the better part of last year I would panic at the thought of it being my last year as a twenty-something year old. I would make a big fuss about not being ready to grow up and I would playfully chastise Bret for having the audacity to make such a transition a full month after I had. Let me tell you though… cancer really blew this fear out of the water! As deeply despairing as I felt about being a 29 year old with cancer, I feel equally as thankful that I am getting the chance to be a 30 year old with cancer. And of course, later this year, hopefully a 30 year old without cancer!

Recently I have been reflecting on the three months I’ve lived since my diagnosis. It seems an impossibly long amount of time, and yet so short. My experiences are divided into pre and post diagnosis, and when I look back at the person I was before I very much seem like a different person. And that makes sense of course, because I have endured so much already. I have faced the very worst of fears, and yet I have also felt the truest kindness and love that this world has to offer. If last month was a time of depression, then it feels to me that this month is a time of hope. I don’t find myself trapped in mazes of fear anymore. Visions of my death no longer assault me at strange and unexpected moments. Instead, I have conjured and cultivated my own vision. One of Bret and I playing with our future children on Zuma beach in Malibu. My parents are there with us and I see us all laughing and goofing around in the surf. The image is sunnily ethereal and yet somehow seems wholly real to me. It is a dream I am going to have to fight for my life for, but it is also a dream that seems absolutely possible to achieve, even if I have to wait a few more years to be finished with treatment.

Of course, I am in no doubt that my improvement in mood is linked to the fact that my chemotherapy seems to be working extremely well! I had my follow up MRI last week (sexy hospital gown photo below), and from what we can tell I may be on track to have a pathological complete response to the chemo by the time of my surgery. As I mentioned before, this is huge news as it would lower my chances of having a recurrence. I am now four rounds down with chemo, which means only two left! And after my next round I will meet with my surgeon again to discuss my options. I am looking forward to getting this conversation started because, as ever when dealing with cancer, there are choices to be made and countless factors to consider.

In other unrelated good news, Bret had a milestone of his own last week: his first writing credit in a feature film for his work as co-composer on the upcoming movie “Five Feet Apart”. I couldn’t be prouder of my husband and am astounded by the beautiful and entirely charming score he tirelessly created. Luckily the chemo Gods smiled down on me, and I was well enough to attend the premiere with Bret and (for the first time) see the movie myself. It really is a wonderfully poignant and endearing film, and I’m not ashamed to say that I cried all the way through it. Of course, cancer is a very different diagnosis to cystic fibrosis, but I certainly did relate to some of the themes of the movie. Being sick doesn’t feel like a young man’s game, and I know that in my journey so far I have often felt very isolated because of my age.

I find myself looking to the future a lot more now. We currently have Bret’s parents visiting, and his brother has just moved to LA as well, so it’s been wonderful to have family around to help out and make us laugh! They’ll be here to help me celebrate the big 3-0, and after they leave we have friends visiting from the UK. After that my parents will be here for my 6th and final round of chemo! So I really feel that there’s lots to be excited about and grateful for.

And so, today is the last day of my twenties. I drank chocolate milk, watched four episodes of Buffy the Vampire Slayer, and painstakingly puffed my way through thirty minutes of pilates. I feel pretty God Damn proud of everything I’ve done to get me to today, and I’m utterly resolved to stick around and make the next decade even better.

With love,

Emma xxx

Emma’s Gofundme

It has been a month since I last updated my blog. In the back of my mind I kept thinking that it was really time to write a new post, but I couldn’t think of anything I wanted to say and I couldn’t muster up the motivation to write anything. So I’ll just be honest: the past few weeks have been stomach gnawingly hard. Receiving a cancer diagnosis is pure horror. Actually battling your way through cancer treatment and coming to terms with what it all means for your body and your future, is unimaginably awful. In my first blog post I joked about being a hypochondriac… if I wasn’t one before, I surely am now! How can you ever really trust your body again when it does this to you at the age of 29?

I have spent a lot of time this month thinking about the chances of having a cancer recurrence. The possibility that I will beat this disease, only to have it come back again in 2 years, 5 years, 15 years time. The idea of dying so young – something of course that has always been a possibility – now sometimes seems inevitable to me. I am locked in a never-ending, silent, yet vicious argument with myself…

“I have an extremely aggressive cancer.”

“It is supposed to be very treatable.”

“The rate of recurrence is high with this type of cancer.”

“But the doctors don’t think it has spread to my lymph nodes.”

“Cancer can travel in other ways and to other places, and then I’m fucked…”

These thoughts are in my mind always. Circling like vultures and often withdrawing me from the world around me. Anyone who knows me will most likely be aware that I am prone to over-thinking and (as is often the case with over-thinkers) anxiety. It is something that I have worked on over the years, attempting to learn healthy coping mechanisms and retrain my brain to think positively. Anyone who has dealt with anxiety will know that such self-management is hard at the best of times. But when you are dealing with a cancer diagnosis and therefore a gruelling treatment plan, it can feel nearly impossible. You are in pain and you are exhausted. Each time you look at yourself in the mirror you look a little different. You look a little more sick. And making plans for the future can feel entirely pointless when you have been shaken to your very core by the reality that time has not been promised to you and that your hopes and dreams are by no means guaranteed.

As ever, I cannot begin to explain how lucky I am to be so well supported. My husband is the kindest, most loving person I have ever met, and he listens to my every fear with unbridled empathy. Crucially, he also provides me with the calmness and logic that I so desperately need right now. I have family and friends checking in with me every single day, and each message truly feels like a hand reaching out to me in the abyss. A jolt of electricity that snaps me out of the loneliness and despair that comes with this horrible disease. I am also seeing a therapist at my hospital’s ‘oncology wellness’ centre, and it has been most consoling to have a place to voice my darkest thoughts and fears. Anxiety caused by receiving a cancer diagnosis is nothing new. Neither is fear of recurrence. In fact, many cancer survivors are diagnosed with PTSD related to their diagnosis. It is a misconception to believe that cancer patients will be fine once they have completed their ‘active’ treatment. From what I’ve been told, many survivors actually find finishing treatment the biggest challenge of all.

In more positive news, we had a follow-up appointment with my oncologist last week. He could not have been more enthusiastic about how well my tumour has been responding to the chemo. In fact… I can categorically say that my oncologist is the only person to ever have fist bumped me after feeling my boob! He said that after 2 rounds of chemo, we might expect to see a softening of the tumour, yet in my case the tumour has almost disappeared. This definitely helps soothe some of my recurrence anxiety, as such a result increases the likelihood that the chemo might successfully kill any and all cancer cells in my body. This doesn’t mean I’m off the hook for surgery, but if I were to have a ‘pathological complete response’ to the chemo then it would definitely lower my risk of recurrence or of developing a secondary cancer.

On an unrelated note, we also had a pretty intense visit to the Emergency Room last Sunday, due to the fact that I woke up in the morning with a fever and shortness of breath. Such symptoms are not to be ignored when you’re going through chemo, as your immune system is in a compromised state. So after speaking with my oncologist, Bret and I decided it would be best that I go and get checked out. Upon entering the ER and informing the triage nurse that I was on chemo and had a fever, I was rushed through to a quarantined room where I experienced a pretty terrifying 20 mins. We’ve since learnt that until the ER Doctors know otherwise, they will treat for the worst case scenario, which in my case would have been sepsis. Bret and I were at the hospital all day, as there was much discussion about whether or not I needed to be admitted to the oncology ward, but I have to confess I was incredibly relieved when my oncologist said that that really wasn’t necessary, and I was able to go home. Here’s an arty picture of us in the quarantine zone…

This Wednesday I’ll be going in for my third chemo, which will officially take me to the half way mark! It’s an odd thing to be looking forward to, and I’m sure the day itself will be as gruelling as always, but after next week I feel I’ll be counting down instead of up! Due to the meds that were added to help with side effects, Chemo 2 was more manageable than round 1, so mentally that is a real win. I have no doubt that each round will be different, and will bring it’s own challenges, but every time I find a way to diminish even the mildest of side effects, it feels like a small victory! Sadly, I have been losing a lot of my hair, and I don’t know if it’s really at a sustainable rate. I have a fair few bald patches on the top of my head but luckily we live in LA… the land of hat-wearing hipsters! So for the time being, I’m just pretending that I am cool enough to pull off this fetching little number, and so far no one has laughed at me! At least not to my face!

With love,

Emma and Bret xxx

Emma’s Gofundme

Before you start your chemotherapy treatment plan you meet with your oncologist for what is called ‘Chemo Teaching’. This is an hour-long session of going through in minute detail every single drug that will be administered to your poor unsuspecting body and what the possible (or probable) side effects might be. Bret and I were handed a print out of the world’s most depressing drugstore shopping list that basically included every item under the sun that might help diminish any nasty side effects. In my classically optimistic and hopeful nature I wasn’t overly worried about this sheet of doom. I continued to make stupid cancer jokes with Bret in the aisles of CVS and earnestly complained about spending $250 on drugs I wouldn’t need. I had made up my mind that only old people get sick from chemo and that for my young and resilient body this would be a breeze. Everyone, I was so utterly and hilariously wrong about this! I feel like I have taken home the jackpot for winning Chemo Bingo! Every single one of my side effect numbers has been called and I’m not happy about it!

The actual chemo day itself went very well. I had been most anxious about having my port accessed and about the possibility of having immediate allergic reactions to the chemo drugs. I’m pleased to say that although it was sore, having the port accessed was manageable, and that I had nothing in the way of allergic reactions at all. I was very anxious when I arrived, and after checking my skyrocketing pulse the nurses gave me a pretty large dose of pre-meds that really calmed me down, and so I slept through a large part of having the drugs administered. Round one chemo day is quite gruelling, as the drugs are given to you at a slower rate to minimise reactions, and so we were there from 8am to 4pm. Also factor in that with every 25 minutes that passed I was having a frozen cap replaced on my scalp and you’ll get a good idea of the level of fun I was having. The incredible thing is that this chemotherapy regiment works so well for my type of cancer, I could actually feel it working as it was being administered! And now that it’s almost a week later, the tumour (which had been about the size of a date) has shrunk away to next to nothing. In less than a week. After one round of chemo. I am trying to keep that in mind when I feel down about the side effects I’m getting. And as one of my lovely friends said to me, for me the chemo’s effects are temporary but for the tumour they are permanent!

Here’s a fun picture of me looking naive about the world of shit that’s about to come crushing down on my head:

(Side note… did you know that chemo can cause sores inside your mouth? I did not know that and I could very happily have lived the rest of my life without ever finding that out!)

In other news it has been almost two weeks since I had my egg retrieval… not quite sure where that time went! I had meant to update the blog ages ago, but I think having the port placement and the egg retrieval all within 72 hours may have been a bit much and it took a good while for me to bounce back. I really did find the first couple of days after the port placement incredibly painful. I am not at all sure what they were on about when they told me I’d experience mild discomfort… they have literally sewn a Tamagotchi sized piece of plastic under my chest and attached it with tubing to my jugular and to my heart. Personally I think it was a touch more than mild discomfort but the good news is that it’s now almost completely healed and most of the time I forget it’s there.

The fantastic Christmassy news is that the egg retrieval went VERY well! When my fertility Doctor called to give me the results the day after he actually sounded amazed. They were able to retrieve 33 eggs, with 24 of them being mature, so that is a real weight off of mine and Bret’s minds to have that as a back up plan. I genuinely don’t think my Doctor was expecting such good results due to the fact that I was having the estrogen suppressant, so it was smiles all round on the egg collection front. As my dear family keeps pointing out to me, Bret and I can rustle up a full football team if we so desire!

Bret and I had a very quiet Christmas Day as I wanted to rest up before starting chemo. Bret cooked an absolutely delicious dinner, with possibly the best roast potatoes of all time, so I have told him that he will have to take on the honour of cooking Christmas dinners going forward! He thinks I’m joking but hopefully when he reads this blog post he’ll realise that I’m being deadly serious. We ate like Kings and had a Harry Potter movie marathon, and it was a pretty cozy time. My Mum also arrived on Boxing Day to be there for the first round of chemo, and it was a huge help and relief to have her here with us. I wasn’t very good company, as I spent most of the time crying and trying not to throw up, but I do think it helped us all to be together for the first round, and also for her to meet the quite frankly brilliant chemo nurses who are taking the absolute best care of me. My Mum flew back home on New Year’s Eve, but her and my Dad will be back at Easter, when I should hopefully be finishing up with my 6th and final round of chemo!

I meet with my oncologist again this Friday to go over how everything went for my first round. I will literally be begging him to give me any and every drug under the sun and I may even start up with some of this medicinal marijuana everyone out here seems pretty darn excited about! If everyone could please pray for my mouth sores that would be appreciated 🙂

With love and best wishes for a Happy New Year,

Emma and Bret xxx

Emma’s Gofundme

***Photo below taken by my long-suffering husband on chemo Day 1 when I was completely high on Benadryl and I thought my port made me look like a sexy robot 🤖

 

 

 

 

The past week has been a whirlwind of appointments and blood-tests and phone calls and insurance letters and decisions and reality. I should definitely start by saying that nothing has gone badly, and everything seems to be nicely on track!

Firstly, I am incredibly pleased at the thought of having this IVF (or as I’ve been calling it Cancer Treatment: Phase One!) done and dusted. I estimate I’ve injected myself in the stomach over 30 times, and with all the hormones and side-effects I’ve been experiencing I feel awfully sorry for my body, especially considering the other upcoming plans we have in store for it! Obviously I feel very lucky that we were able to take this step in safe-guarding our future family, but it has been a huge commitment and has cost an eye-watering amount of money. Tomorrow morning I will be going in for the egg retrieval, and I just hope it’s all been worth it! My fertility Doctor had to give me additional meds to keep my estrogen level at a normal rate (due to the fact that my cancer feeds on that hormone) and that has made things a little trickier than he would have liked. But he’s hoping we’ll still be seeing good results, so I’m trusting in his optimism and authority.

One of the things that I had been most apprehensive about was having my chest port fitted, and that took place yesterday afternoon. I wasn’t able to eat or drink anything until after the procedure, and I found this quite challenging due to the dizzy spells I’ve been getting from the IVF drugs. Unfortunately, the whole endeavour was a bit of an unpleasant one. I had been mentally preparing myself for this procedure for days, and had arrived there quite early. After Bret and I had sat in the waiting room for thirty minutes, I received a phone call telling me that they were rescheduling my appointment to the next day. My stomach twisted as I began overhearing other people in the waiting room receiving the very same call. We were very confused however, as the receptionist said he knew nothing about this and that he couldn’t get hold of anyone to confirm as everyone was on their lunch break. It took another half an hour of waiting (during which time I had worked myself into quite a state) before a nurse casually called me back for the procedure. As you might imagine at this point I really did feel very overwhelmed, and when I was administered the sedatives that had been promised to induce a “dream-like state” I instead became alarmingly more anxious! I was given an additional 2 doses and I still didn’t relax or fall asleep. I remarked to the Doctor that I must be the only person to ever talk through an entire operation in which a tube is being inserted into one’s jugular! I must say that the whole medical staff were absolutely wonderful, and treated me with real kindness and care. Although I had tried to be positive about the procedure, in the end I found it quite upsetting. The funny thing about having an early stage cancer, is that you don’t necessarily feel ill. And so to me at least, these procedures and treatments feel as if I am being turned into a sick person. Some sort of voluntary transformation into a cancer patient even though I feel fine. I keep wanting to tell the Doctors that there must be a mistake, and I must not have cancer… isn’t it obvious that there’s nothing wrong with me?!

The other item on the agenda that I got upset about this week was hair loss. I had decided very early on that I wanted to give Cold Caps a try. These caps essentially work by freezing your hair follicles during your chemo treatment and restricting the amount of drugs that get to your scalp. Many patients report very positive results! What I didn’t realise was just how much of an undertaking this would be. Obviously I knew it wouldn’t be pleasant to be willingly freezing your own scalp, but I did not know that you have to wear the caps before and for several hours after each chemo treatment! And that certain caps require you to change them over every 25 minutes! I found myself really obsessing over this decision and agonising over the pros and cons of each company (there are many here in the States and they’re all slightly different). I think in all the uncertainty and lack of choice I’ve experienced recently, this really felt like something I could take control over. It didn’t help that due to the upcoming holiday and the need to start my chemo very soon, I felt a lot of pressure to choose quickly. In the end, I don’t think any of the things I was getting worried about really matter, and so I made a choice and feel much better for doing so.

The real positive for this week is the help I have received from the Simms/Mann Centre at UCLA. They provide free support and integrative care with a focus on oncology patients’ wellbeing. I met with a councillor who was most helpful in talking through some of my concerns, and Bret and I also met with a nutritionist who talked us through the cancer-diet! One of the main things we learned is that I’ll need to avoid certain foods that spike my estrogen, for example soy and flax seeds. This centre survives entirely on donations and grants, and I can’t put into words how helpful and supportive they’ve already been to Bret and I. They hold lectures, support groups, art therapy classes and one-on-one counselling, and I definitely plan on using their services as much as I can. My approach to this whole shit-show is to accept any help that is offered to me!

All that is left to say is that I am scheduled to start my first chemo on Thursday, December 27th. I’d be lying if I said I wasn’t apprehensive, but all the waiting around can be so suffocating. It feels like so much effort just to get to the beginning of the battle! For now, I am taking comfort in ticking off each item on my treatment plan, and being as kind to myself as is humanly possible.

With much love,

Emma and Bret xxx

 

Yesterday marked a full week since I received the news that I had breast cancer. I had a breast MRI scheduled that I had been incredibly nervous about, not because I’m particularly claustrophobic, but because this imaging would be the most reliable source we had to date to decide if my cancer had spread. We found out early this morning that it has not spread from the right breast, and as far as my doctors can tell, my lymph nodes are looking completely clear. I cannot even comprehend the relief I felt at being told this news. My surgeon actually called me at 8am in the morning even though we had a meeting at 9.30am, because she knew I had been worried sick about it. When she called I was just finishing up at my IVF check-up, where things were also looking very positive. As the Doctors counted on the ultrasound screen how many follicles (and therefore hopefully eggs) were maturing, I asked them if anyone had ever commented on how similar this whole process was to the beginning of Chicken Run, in particular the scene in which Mrs. Tweedy and her husband line up all the chickens and tally their daily egg output. Remarkably no one has ever made this comparison before, although one Doctor did kindly suggest that may be because not many Americans have seen Chicken Run and not because I am completely and utterly barking mad. Personally, I don’t think I’ll ever be able to watch Chicken Run the same way again.

From our 8am appointment at the fertility clinic, we moved swiftly on to my interdisciplinary meeting at the Breast Centre in Santa Monica. I had been even more apprehensive about this meeting, as I would be meeting my full cancer team for the first time, and getting confirmation of my treatment plan. I genuinely cannot put into words how marvellously lovely everybody we met was. They treated Bret and I as if they had known us for years.  We felt immediately at ease and probably confused everyone with the sheer amount of ludicrous jokes we were making. Along those lines I can confirm that my breast cancer is probably not caused by global warming…

What is even more fantastic is that we now have a clear idea of how the next year is going to look. As we suspected, it’ll be 6 rounds of TCHP chemotherapy followed by one year of Herceptin to be administered intravenously every three weeks. For that reason I need to get a port/central catheter fitted pretty darn quickly. I also need to get my heart and kidney function checked before starting chemo. Thankfully, my oncologist is adamant that I can get in one round of chemo before the New Year, but this will have to be after my egg retrieval half way through next week. Apparently I’ll be having my chemotherapy treatment in Beverly Hills, so won’t that be something for the books! There is also a plan to use medication to put my ovaries into a sort of dormancy whilst I have the chemo, as this will further increase mine and Bret’s chance of having a family. The slight complication is that I will need to be on a hormone suppressant for a good 5-10 years after treatment, and you can’t get pregnant if you’re not producing estrogen! But I suppose this is one of those one bridge at a time scenarios.

I met briefly with my surgeon again and I have to say that I like her exorbitantly more than one should like anyone who’s planning to take a knife to their boob. I also met the radiation oncologist for the first time and she was just as warm and knowledgeable as the rest of the team. The plan with surgery and radiation is completely dependent on how I respond to chemo and also if my blood test for the ‘breast cancer gene’ comes back positive. If you have a ‘lumpectomy’ you need radiation and if you have a mastectomy you likely do not. There are lots of things to take into consideration, for example my age and the likelihood of recurrence. The tricky thing is that at the end of the day it will likely come down to my own preference and what I feel most comfortable with. Some women prefer to do all they can to preserve their breast, whilst others would rather take a more drastic measure to provide themselves with a bit of safety of mind. The good thing is that we have some time to decide whilst we go through chemo.

Those are all my updates for now! Again, Bret and I would like to say a huge thank you for the overwhelming amount of support we’ve received so far. Some very kind folks have asked if I can include my gofundme page in my blog as they don’t have access to Facebook, so I am putting the link below along with a terrible photo of me in the sexiest gown I’ve worn all week!

With love,

Emma and Bret xxx

Emma’s Gofundme

 

Here is a maths problem for you. You have met 20% of your insurance deductible and your insurance doesn’t pay out a penny until you’ve met 100%. You have a breast MRI scheduled for the next day that is vitally important, because it will show your doctors if your cancer has spread beyond the initial lesion. The hospital calls you and kindly tells you that you have not met your insurance deductible, and that you must therefore pay a $650 deposit upon your arrival that will go towards your deductible. However, they also inform you that the amount they will ultimately bill the insurance company for the MRI is $4,500 in total and that you will be responsible for the difference, due to not having met your deductible. Wait a second though, because this is where it gets quite interesting… your insurance company may have a pre-negotiated rate for how much they would ‘like’ to be charged for an MRI, so call them to find out what you will actually end up paying. Spend 20 minutes on the phone with your insurance company for them to tell you that they can’t tell you how much it costs, the hospital has to. Call the hospital back and have the exact same conversation with them where they say your insurance has to tell you. Hang on though, there is another option where you just pay out-of-pocket for $1,300 as if you never had insurance in the first place and this won’t go towards your deductible but it may or may not be more or less than what you’d pay if you went through your insurance and paid towards your deductible. Solve this equation to no longer have cancer.

I’d be lying if I said I wasn’t confused. I also feel like Mr Grinch himself now that the IVF hormones are swimming around and spicing things up. The last thing in the world I would want to be is ungrateful, because the fact is not lost on me that I am incredibly lucky to have access to this medicine and miraculous technology. Everyone says if you’re going to have cancer, make sure it’s breast cancer and get it treated in the States! They’re not wrong, but I don’t understand how anyone can be expected to wade their way through this bureaucratic minefield of paradoxes, let alone someone who is processing a cancer diagnosis.

This weekend, I decided to publish my first blog post and share my diagnosis on Facebook. This was an entirely selfish and therapeutic act on my part. I wanted to rid myself of the anger I felt and also have a place to direct any friends or family when they had questions. The response I received was utterly astonishing. I have never been so humbled in my life as I was to receive so many emails, phone calls, texts, messages and comments of support. In fact, they’re still coming through now. I feel so ridiculously lucky to have so many wonderful people in my life that care about me, who want to support me in any way they can, and above all who want to tell me that they love me. It was an overwhelming yet uplifting weekend, where I felt a little less alone and a little more indestructible. On top of that, my beautiful friends Annie and Nate started an online fundraising campaign to help me raise funds for medical expenses such as described above, and also for the IVF which is not covered by insurance. It is not an exaggeration when I say that come tomorrow’s MRI, Bret and I will no longer have any of the savings we’ve spent a year building, and we’re only a week into this thing. Cancer happens just like that, with no warning and no care of who you have supporting you and what figure you have in your bank account. I may have won the world’s worst lottery, but how lucky am I to have people who will not let me get swept away by this?

To each and every person who has contacted me, shared my gofundme or donated to my health and future happiness… thank you from the bottom of my heart. I will be grateful for the rest of (what I’m deciding will be) my very long life.

With love,

Emma and Bret xxx