Now What?

I tossed my hospital gown and buried it under the apple tree. I made my scars invisible, grew my hair curly and wild, and gained my energy level back to normal. I’m just like everybody else.  Nobody could ever tell.

Yet I wake up at night and feel the presence of poison-filled plastic tubes, the flickering pale green light, and that god-awful dripping faucet. The images come and greet me whenever I’m afraid of life.  Like clockwork, at 4 AM. Not to mention those special purple cells going through my bloodstream. The ones who got me in this mess in the first place. I hope they’re doing fine and aren’t plotting on pulling out one of their stunts again. A joke that lasted for a year and a half. I’m still laughing.

Halfway to One

This is what a six-month-old looks like. With a headful of hair. Happy Birthday to me.

Is It January Yet?

Pants down, bra off. The nurse hands me a hospital gown and I tiptoe into the scan room barefoot.

The room is divided into two parts. The machine and I on one side. The doctor and the nurse on the other. We are separated by a screen that protects them from the very rays that I am about to be exposed to.

I climb onto the machine, lie down, close my eyes and wait for instructions. Hold still, hold your arms up, hold your breath. The camera of the machine starts rolling. It speeds up as though it were about to take flight. I, meanwhile, am thinking positive thoughts. Tumor shrinking thoughts. Normal cell activity thoughts. This time it has got to work out. After everything I've been through. After almost two years of hell.

I'm not ready for my world to fall apart again.

Time Flies

I stumbled upon this quote today.


"Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer." - Rilke


Day +67. Still going strong.

Introducing Alien

No hair to speak of.

Home Truths

In other words:

"Gather ye rosebuds while ye may,

Old Time is still a-flying:
And this same flower that smiles to-day
To-morrow will be dying."

Some might say that it's a miserable day outside. It's raining and it's cold. 

But at least I woke up to see it.

Don't delay the happy.

The Odds

How do you deal with something that can't be dealt with?
How do you move on without remembering but without forgetting?
How do you create a new normal?

I wonder if I'm ever going to feel relaxed again. If there is ever going to be a time when I won't panic over a sudden itch, a fever or an unexpected pain and think that it's back. When will I get peace of mind?

50/50 sucks.

Blood Counts

I've been out of the hospital for two weeks now. Little by little I've gained some strength. Yesterday I was even able to go for a 30 minute walk. The doctors are controlling me every other day by blood tests though. My bone marrow seems to be in a shock mode still (what a surprise!) because my blood counts aren't that great. Bah. The worst thing is that there is absolutely nothing I can do about it. Come on platelets and haemoglobin, get your act together! I want to move on and lead a normal life!

DAY +16

I'm at home folks. They released me already on Tuesday, 13th September (DAY +13 post-SCT. Really early!), but since I've been napping away the past few days, I haven't felt up to updating. In fact, I've been too tired to even open my laptop. The fatigue is quite overwhelming. Something I've never experienced before. Something that is hard to explain, since it goes beyond the feeling of being tired. I fall asleep anywhere, ignoring happily both place and time. Climbing up the staircases is a challenge. Let alone taking a shower and changing clothes. Eating is unappealing since everything tastes like cardboard and I still get nauseous from time to time.

But all in all, regardless of everything, and unafraid of sounding like a cliché, I just feel so grateful to be alive. I've survived the "we're going to have to kill you and then bring you back to life"-method of curing that is the stem cell transplant!

DAY +9

0,4!

Oh yeah. That's my white cell count this morning. My bone marrow is producing cells like crazy! 

To get out of isolation I need a steady 1,0. They say this could happen tomorrow! Gosh! 

P.s. Just so you have something to compare the values to, a healthy person's white cell count ranges from 3,4 to 8,2. To those values, I still have some catching up to do, but rest assured, I'll get there.

DAY +8

After various days of blood drawn and the white cell count resulting in whopping 0,0, I expected today not to be any different. Well, think again. My white cell count was 0,2 this morning! The engraftment has finally happened! My stem cells have found their way back home to Tara, erm, I mean, to the bone marrow. Wow! I know that 0,2 doesn't get me out of my isolation bubble just yet, but maybe by weekend. I'd love to feel the crispy autumn air!

DAY +5

Some scribblings on napkin corners, receipts and random scraps of paper.
Between DAYS -2 and +4:

Her primary goal in life is for the Pain to go away. Nothing more, nothing less. But since that isn't an option, Pain makes her prioritize. It makes her not want to talk. Every breath of air can be used more wisely. It makes her not give a fuck. It makes her choose sleep above everything else. Pain ridicules her waif-like mind. It makes death appealing. Pain stretches out its wiry long limbs and crawls into every far-out corner of her body and contaminates her as a whole. It limits her mindset. She loses the big picture. She loses her shit. She sees herself as an extension of her pain. Her body a mere vessel in a state of emergency. A broken lump of nauseous flesh and bone.


And then ---


the Pain goes away. Just as quickly as it came. She is awoken by a ray of sun beaming to her eyes. And all is well. Breathing is easier. She's a five-day old stem cell transplant survivor with no other plans except to exist.

P.S. Oxycodone is a wonderful medication.

Come September. DAY +1

My re-birthday was yesterday. 31st August. What a perfect way to end the month. Although the transplant procedure itself was very straightforward - a couple of syringes of stem cells, straight to the heart - it still felt special to me.

My blood counts are sinking rapidly, so my doctor mentioned that the isolation period with zero immunity would begin tomorrow. No fresh fruit or vegetables for me. Not that I'm actually eating anything else than porridge for now. My stomach is completely destroyed. The five-day chemo did some considerable damage there. And it hurts like hell. As of today they've also decided to hook me on a sugar+salt IV drop, just to make sure that I do get some nutrition.

Well, I'm off to fade into the world of mindless daytime TV. Have a good one everyone!

I'm alive. Barely.

"But the world had other ways of breaking men. They were already familiar with the smell. Sicksweet. Like old roses on a breeze." 

(Arundhati Roy: The God of Small Things)

BEAM chemotherapy regimen. What can I say? Maybe not too much, but this site might give you some insight: cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/beam

So far I've only had the B and the E of the aforementioned acronym, but I'm telling you, this stuff is NO JOKE. 

The timetable for my stem cell transplant (SCT) is as follows:

Wed 24 -DAY -7 chemo

Thu 25 - DAY -6 chemo

Fri 26 - DAY -5 chemo

Sat 27 - DAY -4 chemo

Sun 28 - DAY -3 chemo

Mon 29 - DAY -2 Rest (!!!)

Tue 30 - DAY -1 Rest (!!!)

Wed 31 - DAY 0  SCT aka REBIRTH

From day 0 it takes roughly two weeks for my stem cells to find their way back home to the bone marrow and start producing new cells. The isolation period with zero immunity is most likely between days 0 and +14.

Lots of love to you all. I can feel your positive energy flying in through my open hospital window.


P.S. I've got yet another tube installed in my chest. This one isn't as bad though. It'll hardly leave a scar. And even if it did, scars are cooler than tattoos. They tell far more interesting stories. 

Reisefieber

Remember that age-old question "what would you take on a deserted island with you?"

Now, let's modify that a bit.

What would you take to an isolated hospital room for 3 weeks?

Who'd have thought that the prospect of having to undergo a stem cell transplant felt a bit like going on a holiday? I'm aware that on some level this must be some kind of coping mechanism of the brain kicking in, but really, I catch myself being weirdly excited about it and planning on what colour slippers and pajamas to buy. And no, I don't want to wear anything the hospital has to offer. Thank you, but no.

Imagine yourselves in a similar situation. What would you take? Bear in mind that with all the chemo they're injecting into me I might not be feeling too great. So, any suggestions of reading all of Dostojevski's novels will be kindly received, but most likely discarded. Haha.

23rd August. That's when it all starts, y'all.

When the Going Gets Tough, the Tough Gets Going!

I'm in love with my bone marrow. It was able to produce MORE than enough stem cells for the transplant. They took them directly from the source (and not from peripheral blood stream) under general anesthesia. I'm high on happiness!

A Plan B

but then again, there always is. The question is how many plan Bs are you willing to accept? When to say stop? Is living with continuous plan Bs living? Is quitting losing the battle? Quality over quantity?

The doctors frequently point out that the patient and the medical team make the decisions together. Sure we do. But, in reality, from a patient's point of view, the decision making process is equivalent to a gun pointed to your head, i. e. "do what we advise you to do or you will die."

On Friday 5th August big things are going to happen. A plan B is being carried out. So far I've agreed. Hopefully it is for the best.

-

"Dreams don't come true. 
Dreams die. 
Dreams get compromised. 
Dreams end up dealing meth in a booth at the back of the Olive Garden. 
Dreams choke to death on bay leaves. 
Dreams get spleen cancer." 
(Douglas Coupland: the Gum Thief)


Just, ugh. 


I'm so afraid to post anything what the doctors have planned out for me, in case I  jinx it again. 

Lifeline

In these last couple of hours I think I've shed enough tears to solve the drought problem in Southern Spain. Needless to say, this stuff, Mozobil, hasn't worked out as well as they wanted. They're willing to give it one last shot tonight, but yeah, chances are slim that I'll produce enough stem cells for them to collect tomorrow. I just have to face the fact that my bone marrow hates me.

Here I am, stuck in my hospital room, these tubes installed in my neck. They were meant for the stem cell procedure, my vital lifeline. Hoping for miracles, because miracles don't exist, and I've tried everything else that does.

Mozobil

Ok. I'm still at the hospital, waiting for my stem cells to mobilize, which they haven't, for your information. Today they're going to try with a drug called Mozobil to see if it can do the trick.

Mental check. Never make plans with cancer. This is so fucking disappointing that I might as well just crawl under the sheets and die.