Krukenberg

You see, the thing about cancer is that you often hear of the nausea and hair loss. But what if by some stroke of luck, you somehow managed to get through all of that, slightly bruised but otherwise still whole. Then what?

Nobody tells you either about how nerve wrecking medical appointments become and that even if you’ve done it once before you’re still not prepared the second time cancer happens.

—

I picked up the form from the counter of the dive school and started filling it up. Name, email address, contact number – pretty standard stuff.

Do you have any pre-existing medical conditions? No diabetes, no heart diseases, no lung diseases. But what about cancer? Does that count as a pre-existing medical condition?

Do you have a colostomy? No colostomy, but I had my bowels resectioned before so should I make a note somewhere on the form?

I hereby declare that the above information is accurate to the best of my knowledge.

I signed under the line and submitted the form, answering ‘No’ to the questions asked without adding in any further details.

What nobody tells you is that while you might have gone through chemo just fine, you’re still going to be fighting cancer. Just that this time, the battle isn’t physical anymore but instead psychological. When you least expect it, you’re going to be reminded again and again of what you’ve been through.

Getting back to the life I knew had its own challenges. Going back to work for a start was one. While my bosses remained the same, there were numerous new hires made during the year I was away and going back to work again probably feels how starting a new job feels like – I had to make new friends again and figure out what everyone’s working style was (you guys have been awesome by the way, and I’m not saying this just cause you are reading it)

And then there was soccer. My first few games back earlier this year were utter rubbish. Kept getting yelling at for missing the ball, clashing with my team and being at the wrong positions. Didn’t help that I hadn’t exercised for almost a year and that I kept thinking about the excruciating abdominal pain I felt the when I last played in 2015. It took awhile and a lot of practice on my part and I did eventually get back to my old form (I hope).

Life goes on as normally as it possibly can, until the week before my medical appointments. I know it’s stupid, pointless and a waste of energy to worry but I couldn’t help myself. I kept thinking about whether I’ve actually lived enough, kept telling myself that even if anything happened, I did it once, I will get through it.

 

26th April 2017

I went in for surgery again. A routine CT scan indicated that my ovaries were swelling and that there was a mass growing in each of them. Yet the blood markers for ovarian cancer was well within normal range. Because of this, my medical team needed to go in and take a cell sample in order to determine if it is again, cancer.

If it wasn’t cancer they will just remove the cysts, a pretty simple surgery lasting no more than 2 hours.

The clock in the operating theatre read 09:50:43 before they knocked me out. It was 2.20pm when I first woke up. A small part of my mind knew then that shit just got real but it was drowned out in the morphine clouded haze. There was just too much for my brain to process then.

When I was back in the ward, I kept harassing the nurses and the doctors on call, asking them what exactly happened in the theatre. They kept repeating the same line, that they were not authorised to tell me, and that I was to wait until the next morning for the consultation in charge. Not one of them had to courage to meet my eye.

You see, us humans, if we could avoid it, would rather not be the bearer of terrible news. We are just not conditioned for such situations.

The blood markers for ovarian cancer were all within normal range because it wasn’t ovarian cancer. It was a Krukenberg tumour. In simple layman’s terms, the old colorectal cancer was back and had spread to my ovaries.

Everyone was hoping that it’s something benign, because even the blood markers for colorectal cancer, CEA, was within normal range. Surgery took almost four hours because I ended up having a hysterectomy with bilateral salpingo-oophorectomy – I had my ovaries, womb and all other women bits down there removed. (I have photos of those bits if you are interested but it is pretty NSFW.

To put it very simply, cancer is considered Stage 1 when there is a tumour but it hasn’t caused the organ to decay, Stage 2 when the organ had begun to decay, Stage 3 when there is lymphovascular invasion and Stage 4 when it has spread to another organ other than the primary.

So yes, it is a relapse and cancer is now considered Stage 4.

—

Losing my ovaries meant that I went straight into menopause. Unlike your mum or aunt, I didn’t get the five to ten years to adjust to the decreasing levels of oestrogen but instead went from maximum capacity to zero all in an instant.

I’m sure all women reading this have experienced some form of mood swings during PMS. All men with wives and girlfriends will probably know what I’m talking about as well. Imagine dealing with that irritability at everything and anything non stop for 24 hours, 7 days a week. Throw in self-doubt and melancholy, as well as pain and fatigue, fear and loneliness into the mix and you’ll kinda be able to begin to imagine how I felt after surgery.

My brain knew that I made the right decision to consent to removing my womb because I’m not the typical textbook patient. I didn’t want to come back in another year or two for another surgery because the cancer had spread to some other stupid area.

My Mr Prince Charming had probably fallen off his horse or something while on the way to meet me (hence probably why I still have not met him yet), making it an even more difficult decision to make.

My heart, however, kept making me second guess myself. I kept grieving for the children I’ll never have and as stupid as it sounds now, I kept thinking if I was less of a woman.

Technically kids weren’t out of the picture yet because I had banked my eggs a year earlier and surrogacy can be done legitimately in many countries including neighbouring ones like Thailand. Previously when asked in schools during classes such as GP, I’ve always argued that if there was a medical reason to warrant surrogacy, then why not? But when the question is shuffled up a little and it’s my life in question, I don’t have an answer. Scientifically, there is nothing wrong with surrogacy because the womb is just a vessel to nurture the baby. Yet to me it doesn’t feel right to “manufacture and buy a baby” especially since I have been fighting so hard for my own life.

Cancer a second time felt like an utter joke. I did everything right the first time around. Surgery, chemo then months and months of resting and not working and more resting. I even did everything the Internet asked me to do – read, binge-watch TV, journal, make a scrapbook. I even got a commemorative tat to remind myself of the fragility of life. And yet here I am once again; the cancer patient.

“But you’ve done this before so it shouldn’t be that bad right?”

I spent my whole life planning and working towards the things and experiences I wanted for myself. I knew which schools I wanted to attend, the courses I wanted to pursue, the type of internship opportunities that I wanted exposure to, the jobs I wanted to hold, and even the organisations that I wanted to work for, at which point of my career. (I know I sound pretty nuts)

Cancer, twice, was definitely not part of the plan.

The histopathology report indicated that other than my ovaries, there were signs of cancer in my womb. As messed up as it sounds, I took comfort in the horrible news.

I made the right gamble.

My team decided to run a CT-PET scan to determine the baseline and the extent of the disease. Turns out that other than my pelvis area, there were signs of invasion in my lungs and on my peritoneum.

It’s scary to be alone with my thoughts, to stand at the edge of despair, trying hard to not drown.

The first time I knew I was going to get better. This time, I didn’t know anymore.

You would think that having been there and done that once, I’ve would have heard all the nonsense theories and remarks possible. HA! Nope.

“You should inject vitamin C into your veins. It’s the most effective method to cure cancer. Doctors don’t study nutrition so they don’t know this”

Oh sure. If that’s the case oranges would have been a commodity more valuable than oil and gold. Yes, Vitamin C can help during chemo as it helps to boost your immunity and prevent unnecessary infections but it doesn’t kill cancer cells!

Chemotherapy, a broad umbrella term used to classify all treatment plans, is usually given either orally or intravenously. Chemotherapy works by killing off rapidly dividing cells, such as cancer cells, as well as innocent bystanders, that happened to be in the wrong place and at the wrong time, such as hair follicles, blood cells and cells in your gut. Hence the reason for side effects such as nausea and hair loss.

“You drink too much cold water so you damaged your colon that’s why you got cancer”

What about Eskimos huh? Okay I’ve never met an Eskimo but I’m pretty sure that they don’t drink piping hot water every single time.

It wasn’t just random strangers that crucified me, but people from my own faith as well. There were people who told me that I am in such a situation because I didn’t go to church enough, I didn’t pray properly, I’m paying for my sins of partying too hard.

For the record, I don’t smoke, I don’t drink and I actually exercise.

 

“Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I’m dying, until I actuallydie, I am still living.” – Paul Kalanithi, When Breath Becomes Air.

People kept telling me that I was really brave about everything. But “brave” constitutes the idea of a choice, something that I didn’t have. It’s hard really, not to let the idea of death overwhelm me and to remember that I’m still living.

There were times where I found myself curled up in a ball, weeping my heart out. It felt like I had lost, lost to myself no less. I wanted to hide under the blanket. I wanted to run away, to not seek treatment and to let nature take its course.

Krukenberg tumours are considered to be rather uncommon, with studies noting that it accounts for only 1 – 2% of all ovarian tumours. Patients have a very poor prognosis, with studies reporting a survival rate ranging anywhere from as little as three months to as many as 27 months. As per the first time, there were a lot of questions that science had no answers to – there is much controversy regarding the treatment of krukenberg tumours as there is no single fixed treatment plan. The generic idea then, is to surgically remove the tumour, followed by chemotherapy targeting the primary cancer, which in my case was colorectal.

If there was no guarantee that chemo will work then why bother spending the time to buy me more time? If I didn’t seek treatment I could go back to soccer, back to work, back to eating things like sashimi and yoghurts.

I could pretend to be normal.

I restarted chemo. I restarted then only because everyone I asked thought that I should, including a friend and mentor who’s pretty pro-choice, whom I’ve had very frank conversations on dying with.

I was back on the same protocol of FOLFOX as per the previous time with the addition of Avastin. Avastin technically is not a chemo drug but rather a biological therapy drug. It works by preventing the formation of blood vessels, thus preventing the tumours from forming new blood vessels, effectively starving it off.

With Avastin coursing through my veins, and with clinical guidelines saying that it will remain in your system for at least 28 days, sports was even a bigger no than before. Injuries meant that the wounds may not close properly due to the inability of my body to form blood vessels and the slower clotting factor from the lower platelet counts and higher risk of infections from the lower white blood counts.

Chemo sucked. It sucked even more than the first time because for some reason I’m a lot more nauseous this time. During the days that we run chemo, I can barely eat or drink anything. I constantly feel bloated, so bloated that I often ended up regurgitating my food. It hurts when you are regurgitating your food with so much force that it doesn’t just come out through your mouth but through your nose as well. And then you smell nothing but bile for the whole day because it is actually in your nose.

The first time I actually gained weight during chemo. This time I was shrinking and friends and family noticed it and started worrying.

Cancer is a savage disease because not only does it engage in physical warfare it engages in psychological warfare too. Cancer stole from me my health, my identity as a communications practitioner and a soccer player, leaving me wondering what is there left.

What then makes me, me? What am I living for?

I sought help. I spoke to a counsellor because while I had a dedicated team to treat my body, I needed someone to help me treat my mind.

It took a really long time on my part but I finally figured out that the only purpose to life is love. Love your family, friends and even strangers. But more importantly allow yourself to be loved.

The first time cancer happened, I was too afraid to talk to others about it. I was too afraid of their questions, to afraid to lose even more friendships. It took a ridiculous amount of courage a year ago to pen the Facebook note that I wrote exactly one year ago from today.

Yet all that I received since then is an immense outpouring of love and support. Cancer a second time was less lonely simply because I allowed myself to be loved. Yes I still had haters, people who left nasty comments on the blog, but I had more people to open my heart up to, more friends who took my cue and found the courage to text and ask how I was doing.

Somehow or rather I found the courage to take it one step further and started blogging about cancer (http://kimberleygermaine.com). Sharing my story humanises this thing called cancer. Cancer is something that we know so much and yet so little about. We would know someone that battled cancer but wouldn’t know the intimate details because we are either too embarrassed or too afraid to ask. What we know are often half truths and hearsays, stories that inspire more fear than hope.

When I first got sick, I was searching all over the Internet for someone with a similar story to mine. All the websites that I can across were either American or European sites, and the challenges that they faced seemed very different from mine. Hopefully my story will provide some other Singaporean with the inspiration they need to carry on their journey.

While studies say that the prognosis of Krukenberg is between three – 27 months, it’s been almost eight months since the second surgery, nine since we first brought up the topic. As early as August last year, ovarian cysts had started showing up on the scans

It’s been one year since I first wrote about cancer, two since my first surgery, two years nine days since I figured out that I have cancer, two years seven days since my surgeon confirmed it, two years nineteen days since I first checked into the A&E.

ANYWAY, in this 24 months, I’ve lived at a more accelerated pace, doing things that I otherwise wouldn’t have done. I started volunteering regularly, went backpacking alone across Europe, spent 6D6N on the trans-siberian rail, stayed in a ger in Mongolia, went hiking in Hong Kong, watched the sunrise on Mt Merapi, started a fundraiser for cancer research, took up diving, found an amazing group of friends that I can share my faith with etc and of course started blogging.

While I’m not dying yet, I’m not out of the woods either. We’ve halted chemo for the past one month or so because my right kidney got a bit jealous that with the attention the rest of the body is getting and started throwing a fit. Something know as hydroureteronephrosis. So now we are working to give my kidney all the attention it desires and then we’ll probably restart chemo again. Whatever it is, I’ll have faith and take it from there, one step at a time.

But I still don’t know how much more time left I’ve got. What I do know is that you just gotta live.