#I haven’t done a full day’s work since December 13th and I’m just expected to show up today and do the job that I’m paid to do

[eyra]

sitting in my car outside work staring dead ahead like a horse waiting to be shot

[pitiless-achilles-wept]

All I want for Christmas...is a working cancer treatment

Hello friends,

It's getting to be that time of the year again. No, not Christmas, although I'm reliably informed that it will indeed be happening again and soon (a thing I, who haven't bought or made a single gift yet, can't quite believe). It was this time last year that I first called my doctor about the mass in my breast that had become too large--and too tender and painful--to ignore any further. They didn't see me right away...because of the holidays and because for someone with my risk level (basically 0 - at age 34 with not a single person in my family with breast or ovarian cancer) it didn't seem urgent. It was.

And now, tomorrow (Tuesday the 17th), I'll be heading into my oncologist appointment at Penn expecting to hear, based on the results of my scans from Friday the 13th (spooky!) that the initial tumor has gotten bigger again and that I will need to leave the clinical trial and pursue other options. I'm expecting this, though I hope desperately to be wrong, and have a visit to my supervising oncologist at Dana-Farber in Boston planned for the 19th. From there I'll go to Christmas with my parents and New Year's with a friend in Colorado before returning home to whatever new treatment 2020 has in store.

Now, obviously I hate that I'm going through this at all. After I heard about the tumor growth last month I was crushed that I hadn't even managed to make the average time that participants in this particular trial found to make a positive difference (6 months...I got 4). And I still am crushed. I'm not going to lie and say that I'm over it ,or not furious, or not disappointed. But what I especially hate right now is that it feels seasonal and like it's going to ruin my holidays again and stretch on through all the coldest and most miserable months...just like last year. It's a series of bleak anniversaries that I was already dreading even when things were going well. And now that they're not, well, you can imagine how dread is compounded with fear, anger, and sadness.

Since not all of you were there (and since this blog did not exist) let me tell you a little about what it was like at this time last year. [Account below the cut]

As I said above, it was around now (December 19th, actually) that I first called my GP's office to talk to them about the lump I had been aware of (but not really concerned by) for a few weeks. It's likely that it was around for far longer than that - long enough, certainly, for me to be diagnosed Stage 4 from the start. There are a lot of reasons why I didn't "catch it" earlier. (I actually hate this phrasing. It makes it sound like I could or should have been more vigilant and thus bear responsibility for my own illness.) I won't go into them here except to say that the previous year had itself been the worst of my entire life. There was a lot of loss and it's not really an exaggeration to say that it annihilated me. But I was able, with the support of friends and family, to reconstitute myself. I was proud of having done it too. What I didn't realize, though, was that in rebuilding myself some parts were coming back...wrong, almost as though psychic damage had been written on a cellular level.

“Did you know?" "Could you tell?" Nearly everyone asks me these questions, or some variation on them, at some point. I would say that I’d like to ban them from all discussions except that they are all I think of all day, asking myself: Did I know? Could I tell? And (more accusatory) “Why didn’t I know? Why couldn’t I tell?”. Despite knowing better, I still often believe that I brought this upon myself. I believe that I should have noticed sooner or, when I did notice, I should have acted faster. But, the thing was, I just couldn’t stand for another thing to go so horribly wrong in my life. So when I look back at this time, the time before I was aware of a lump in my breast, I can hardly fault myself for not noticing. I first felt that something was wrong with the swelling in my breast that would not go down around Thanksgiving 2018. I Googled furiously and convinced myself repeatedly that it was probably hormones, a cyst, or an infection. I assessed my risk factors (0) and and the chance that something so terrible would happen to me right after this other terrible thing had happened.

Surely, I felt, the universe couldn’t be that cruel.

I called in mid-December and my doctor’s office told me it would be hard to fit me in around the holidays. What I described sounded like it was probably benign and, since my risk level was so low and since I had even had it confirmed that I was cancer-free in 2016 (when they did a spinal tap because my chronic fatigue was so bad and my white blood cell counts so high), they advised me just to come in when I was back in January. I stayed in St. Louis for a memorial service, celebrating the life of the woman who was effectively another grandmother to me--my parents’ oldest and dearest friend--and had a strange feeling the whole time. I remember sitting among her very many friends and family, surrounded by photographs and poetry and music and all the signs of how loved she was, thinking with an improbable certainty that people would soon be remembering me this way and hoping that they would say I had positively affected their lives as much as she had.

Meanwhile, the swelling was huge. It was hot to the touch and ached like a bruise. I tried to see this as a good thing; heat and redness mean infection, which meant it was probably mastitis. I was worried enough to call my parents’ doctor to ask if I should go into the cancer center at Barnes-Jewish Hospital. He said the same things about how unlikely it was and how it was probably infected. I saw my doctor when I returned and, worried, she nonetheless prescribed me a course of antibiotics. She was also hoping, I think, not to be confronted with the truth.

The antibiotics upset my stomach terribly as did my constant anxiety. After five days with no effect, she gave me a stronger one, which also did nothing. It was now ten days since I had talked to her, a full month since I had first called. She sent me for a biopsy. It was on the 21st of January. On the 24th I heard that the tumor was cancerous. On the 28th, I heard that my cancer was also in my lungs and that I would need more scans and MRIs to determine the full extent of the metastasis. Then the terrifying and seemingly endless cycle of scans and bad news began. I don’t want to rehearse that here, though these months hold a series of bad anniversaries for me. What I want to do is to say that, at a certain point, of course I knew. Unlike most people in my life, who regarded the biopsy almost as a formality, I absolutely thought that I had cancer. Maybe it was just because I try to prepare myself for the worst. (I was still notably unprepared for this.) But maybe it was because I knew my body, even on a subconscious level, and could tell something was amiss.

I do have a sense, too, of when treatments are working or not. I can’t tell you the extent of why I know, often, but the tumor itself is one indicator. It’s very large and when things aren’t working it gets even larger. It ambiently hurts all the time, in a way that is subtle and that it is easy to almost (but never) forget and that is too minimal to mention to people. (Actually, these past two days it has hurt so badly that it feels like someone punched me. I cannot take this to be a good sign.) Since I heard my latest results from my doctor a month ago the tumor has gotten bigger. I probe it all the time, examining myself in the mirror from different angles--bra off, bra on--like when I was so desperately hoping to grow real breasts in middle school. I assess how far it sticks out in one position vs. another and how red it is at certain times. I try to convince myself that the pain is hormonal, that the apparent growth is how I am standing. But that’s just repeating what I was doing at this same time last year, casting around hopefully for an explanation that isn’t the one I fear.

For tomorrow, I hope for the best, but I expect the worst. It may be that you think I’m too worried too soon; I know some of you may. And let me tell you that, although it's contrary to my nature in general, I would love to be wrong. I hope I am. I will do my best to share news here, even in a short post, since I know that those of you along for the journey will be anxious to know too. For tonight, I'm scared. I'm better able to cope with bad news once I know what it is and am able to make a plan or a choice - to exert some control. And I'm certainly (sad to say) not feeling much of the spirit of Christmas, which is a shame since I actually love it. If you have extra love or cheer or, heck, any Miracles on 34th Street (I'm willing to commute!) please send them my way.

Love, Bex

[justinsdaysinthedark]

Post #12 - 317 Days

209 days since my last blog post, hey? Time flies when you fit two rounds of Chemo, a birthday, Christmas, New Years, a cricket season, Australia Day, Valentines Day and to top things off, a worldwide pandemic in there.

First and foremost, let me clear the air. Why haven’t I posted a blog since September 18, 2019?

I’ve been telling people it’s because I’ve been lazy - which look - let’s be honest, that’s partially true. I think my blog early days let me emotionally explore my deep feelings, understand what was going on and share to you all what I was going through. It was used to express my feelings and thoughts when I felt I had to and I was okay with that.

Since September until the end of my chemo though, I very much shut myself off to the world and spent the time focused on me and getting better. Post chemo was about getting better, back into life and into a normal routine that I was comfortable with. Whilst I admit I was being lazy, a large part of me wasn’t ready to talk about what I’d been through or was about to go through. I wanted to spend the back quarter of 2019 focusing on me with my loved ones around me because that’s what felt most important at the time.

Round 3 of Chemo was exactly like the first round. Just as rough on my body however I felt prepared this time. A little drug called Methotrexate (the word still haunts me!) got to me again and basically shut my body down for a fortnight or so. My mouth produced mucus instead of saliva and I had ulcers right through my body - from mouth to gut. It wasn’t a pleasant experience and I hope nobody I know ever has to go through that again.

Round 3 chemo began on Wednesday September 18th, 2019 and I eventually got out of hospital on October 20th - a month and two days later. It would’ve been sooner however that final week I ended up contracting what they call parainfluenza type 3, which wasn’t as bad as the flu but worse than a cold. The constant temperatures every night were a pain when all I wanted to be was at home. I eventually was sent home once everything settled and the next 10 nights at home were bliss - it was the longest time I’d been at home since June!

Round 4 and what turned out to be my final round of chemo began on October 30th, 2019. Much like round 2, it was a breeze. I felt absolutely fine all throughout, despite the fact I was neutropenic for a number of days. Eventually once my white blood cell count had risen enough, I was sent home on November 15th - just a brisk 18-day stay this time! My goal at the start of this journey was to smash out my chemo by Christmas time. Not only had I smashed it out by Christmas, I was done by my birthday (21st November)!

Following my final round of chemotherapy, I was required to head back to Monash Clayton every Wednesday for the next few weeks for blood tests and so that the nurses could clean my PICC line which was still in at this stage. A few weeks went by and my bloods were showing signs of improvement, which gave me an incredible amount of confidence in my body moving forward.

My PICC was finally removed on December 12th at Monash Clayton and this was to be, in retrospect my final trip to ward 44.

Friday December 13th saw my first outpatient appointment with the haematology doctors at Casey. As I expected, they were extremely happy with the progress and scheduled appointments once a month for the next little bit.

In my fifth blog, I wrote that I’d bookmark three dates throughout this journey. They are as follows:

* Finding out I had cancer (Thursday July 25th)

* Beginning Chemo (Wednesday July 30th)

* Finding out I’m in remission (???)

I’m pleased to let you all know that on my outpatient appointment on Friday, February 21st 2020, my haematology doctor Michael advised me I am officially in remission. It was fitting seeing it was Michael that initially told me 7 months earlier that I had lymphoma. I won’t lie, this was an incredibly happy moment after everything I’d been through since it all began in June. I was hesitant to use the word ‘remission’ since I’d left hospital in December but now that one of my doctors had officially confirmed it, I could settle it in my mind as well.

From here, my check up appointments got moved to every three months instead of every month.

As it stands this afternoon April 14th, 2020 I am kicking goals. I am as far as I am aware cancer free, my eye is basically back to normal. I finished the cricket season playing the final two games (which were huge for me!) and am now back at work 32hrs a week - and will be back full time (40hrs) over the coming weeks. I’m back to what I feel to be a ‘normal life’ and honestly couldn’t be happier. The trivial things in life don’t matter to me anymore and I fell like I am able to look at the bigger picture in things.

Whilst this post hasn’t been great - much like my life since June 2019 - I feel like I’ve ticked off something that’s been sitting with me for a few months now. A final blog post ✅

I’d like to end this by thanking each and every single one of you who supported me over the past 10 months. From my girlfriend Courtney, my parents, extended family and friends. My cricket club and football clubs as well as work colleagues. You‘ve all been incredibly instrumental in my life over the past 10 months and for that, I thank you.

I leave you with a variety of photos since I finished my final chemo treatment in better. I’m out the other side and unless something pops up in the future, it’s adios from me! xx

December 2019 with my Nephew, Jaxon. 

Christmas Day, 2019 with my cousin, Ella.

Bairnsdale inbetween Christmas and New Year, 2019. 

January 2020 with Courtney

Tasmania, January 2020

Ross Noble, February 2020

End of Cricket Season drinks, March 2020.