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.
Sunday, November 6, 2011
Thursday, October 6, 2011
Monday, October 3, 2011
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."
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.
Thursday, September 29, 2011
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.
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.
Monday, September 26, 2011
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!
Friday, September 16, 2011
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!
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!
Friday, September 9, 2011
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.
Thursday, September 8, 2011
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!
Monday, September 5, 2011
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.
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.
Thursday, September 1, 2011
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!
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!
Thursday, August 25, 2011
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.
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.
Wednesday, August 10, 2011
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.
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.
Friday, August 5, 2011
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!
Monday, August 1, 2011
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.
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.
Monday, July 25, 2011
-
"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.
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.
Thursday, July 21, 2011
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.
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.
Wednesday, July 20, 2011
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.
Friday, July 15, 2011
Percentages
So, I've been thinking a lot about this 50% survival rate the doctors keep emphasizing on. Like, where will I fall or what does that even mean? My mind is racing with near misses, hopeful wishes, scales weighing and placing me either up or down, glasses half filled or half empty.
Either way, I should know better. Never trust statistics. What happens to me, will happen to me hundred percent of the time. No one can predict that.
Either way, I should know better. Never trust statistics. What happens to me, will happen to me hundred percent of the time. No one can predict that.
Sunday, July 10, 2011
Woohoo -
-hoooo! What a fall, what a dash into dark into light, what a plunge ,what a glide, what a fright!
So, who knew that Cyclophosphamide is mustard acid. Jeez. What a trip, what a time, what a life.
I'm at home now, recovering. You wouldn't believe the dreams I've been having these days.
Moving on. I said I'd post my timetable for the following months. Here it is!
16TH JULY
Blood tests and possible blood transfusions
17TH JULY
1.Surgical procedure (Hickmann-line put into my chest)
2.Beginning of the stem cell harvest. They're collecting my own stem cells via bloodstream. This can take up to a week before they have the sufficient amount.
9TH AUGUST
Stem Cell Transplant:
1. BEAM chemotherapy for 5 days. This destroys my bone marrow, as in, leaving me without immunity.
2. Returning back my stem cells. This is called day 0 or rebirth.
3. Waiting for my own stem cells to find their way in my body. The engraftment usually takes about 10 to 15 days.
4. And that's it! I'm done! Adios, fuck you cancer! Hope you stay out of my life!
So, who knew that Cyclophosphamide is mustard acid. Jeez. What a trip, what a time, what a life.
I'm at home now, recovering. You wouldn't believe the dreams I've been having these days.
Moving on. I said I'd post my timetable for the following months. Here it is!
16TH JULY
Blood tests and possible blood transfusions
17TH JULY
1.Surgical procedure (Hickmann-line put into my chest)
2.Beginning of the stem cell harvest. They're collecting my own stem cells via bloodstream. This can take up to a week before they have the sufficient amount.
9TH AUGUST
Stem Cell Transplant:
1. BEAM chemotherapy for 5 days. This destroys my bone marrow, as in, leaving me without immunity.
2. Returning back my stem cells. This is called day 0 or rebirth.
3. Waiting for my own stem cells to find their way in my body. The engraftment usually takes about 10 to 15 days.
4. And that's it! I'm done! Adios, fuck you cancer! Hope you stay out of my life!
Thursday, July 7, 2011
Cyclophosphamide
I have good news to tell you. The PET scan came back negative! I've got a NED as in No Evidence of Disease. I am therefore in remission now and utterly thankful to ICE for doing such a wonderful job at eradicating my Hodgkin's cells.
This is far from over though.
Since my disease seems to be of the sneaky kind and likes to mutate and make itself resistant to chemotherapy, there is a huge risk that it'll come back if they don't perform the stem cell transplant (SCT). I am hence back in hospital, getting treatment again. This time around Cyclophosphamide is going to kick my butt and at the same time mobilize my stem cells.
Instead of explaining in detail the long-winded process of what the SCT entails, I'll be posting a rough-sketched timetable soon. All in all, my doctors are talking about a two-month process. I can deal with that. I'm willing to sacrifice this summer. This is my best shot at getting well.
This is far from over though.
Since my disease seems to be of the sneaky kind and likes to mutate and make itself resistant to chemotherapy, there is a huge risk that it'll come back if they don't perform the stem cell transplant (SCT). I am hence back in hospital, getting treatment again. This time around Cyclophosphamide is going to kick my butt and at the same time mobilize my stem cells.
Instead of explaining in detail the long-winded process of what the SCT entails, I'll be posting a rough-sketched timetable soon. All in all, my doctors are talking about a two-month process. I can deal with that. I'm willing to sacrifice this summer. This is my best shot at getting well.
Tuesday, June 28, 2011
A Quick Update
Many of you have been asking about yesterday's scan results. I'm afraid I don't have them yet and won't know the outcome of the tests until 6th July. I'm telling you, having cancer isn't the hard part, it's the waiting that eats you up!
This week I'm planning on taking care of myself. Resting, exercising and eating healthily. I want to be as prepared as possible (both physically and mentally) for my transplant. The six-day chemo can try and crush me, but just watch and wait, I'll come back even stronger.
This week I'm planning on taking care of myself. Resting, exercising and eating healthily. I want to be as prepared as possible (both physically and mentally) for my transplant. The six-day chemo can try and crush me, but just watch and wait, I'll come back even stronger.
Sunday, June 26, 2011
Tuesday, June 14, 2011
Tuesday Thoughts
"If you care about something you have to protect it – If you’re lucky enough to find a way of life you love, you have to find the courage to live it."
- John Irving (A Prayer for Owen Meany)
I have now officially completed two cycles of ICE. With honours, if I may brag a bit. Of course, this last weekend has been horrendous and I've basically moved in the orbit of bed-sofa-bathroom, but still, I consider it an achievement to be up and about today. Actually, I'm feeling fine. I might even walk to the local library later on in the day.
My schedule from now on is as follows. On 27th June I'll be having my decisive PET scan - the results of which will determine the course of treatment. If there has been considerable reduction of the tumor activity, they'll move on to the stem cell transplant, starting the harvesting of the cells on 7th July. If not, two more ICE cycles will be given. Obviously, I'm hoping and praying for the first option, although at the same time, I'm scared shitless. Having a bone marrow transplant wasn't definitely part of my plans this summer. I wish I didn't have to go through this. Surely there must be a way I can weasel myself out of it?
- John Irving (A Prayer for Owen Meany)
I have now officially completed two cycles of ICE. With honours, if I may brag a bit. Of course, this last weekend has been horrendous and I've basically moved in the orbit of bed-sofa-bathroom, but still, I consider it an achievement to be up and about today. Actually, I'm feeling fine. I might even walk to the local library later on in the day.
My schedule from now on is as follows. On 27th June I'll be having my decisive PET scan - the results of which will determine the course of treatment. If there has been considerable reduction of the tumor activity, they'll move on to the stem cell transplant, starting the harvesting of the cells on 7th July. If not, two more ICE cycles will be given. Obviously, I'm hoping and praying for the first option, although at the same time, I'm scared shitless. Having a bone marrow transplant wasn't definitely part of my plans this summer. I wish I didn't have to go through this. Surely there must be a way I can weasel myself out of it?
Wednesday, June 8, 2011
Memory Lane
One year has passed since I was diagnosed with this disease. I approach it quite differently now than I did before. Last year my only thought was how I was going to make it through six months of chemo. Not once did it cross my mind that the treatment might not work. Now I wonder how I'm going to make it at all. I'm completely focused on beating this. Getting a clean PET scan means the world to me. The doctors tell me my chances that the stem cell transplant will work are 50%. All of a sudden this doesn't feel like the "good cancer" anymore...
Anyway, being bored as I am, I've decided to post a few pictures that I took during the ABVD treatment in summer 2010. I photographed myself and how my hair was gradually falling. With ICE chemotherapy it has been a different story all together. My hair fell off on 5th June 2011 at once. I'm bald as a baby. The last photo is of today in the hospital. It feels weird to be completely hairless, but hey, if that's what it takes to cure me, I'm all for it. Bigger guns for nastier cells. Bring it on.
Anyway, being bored as I am, I've decided to post a few pictures that I took during the ABVD treatment in summer 2010. I photographed myself and how my hair was gradually falling. With ICE chemotherapy it has been a different story all together. My hair fell off on 5th June 2011 at once. I'm bald as a baby. The last photo is of today in the hospital. It feels weird to be completely hairless, but hey, if that's what it takes to cure me, I'm all for it. Bigger guns for nastier cells. Bring it on.
 |
| June 2010: Before ABVD treatment |
 |
| July 2010: After two ABVD chemotherapy sessions. My hair is starting to look like a mess. |
 | |||||
| August 2010: the hair is thinning already. After this picture I started to wear hats. In November shaved it short. |
 |
| TA-DAA. This is me today! Oh dear. Also feeling slightly nauseous. |
Sunday, June 5, 2011
Wednesday, June 1, 2011
50/50
"You can't change your situation. The only thing you CAN change is how you choose to deal with that."
Tuesday, May 31, 2011
Neupogen My Friend
 |
| The ultimate white cell booster! |
Friday, May 20, 2011
A tired soldier...
 |
| These little bastards made their first impressions on my body around 20.30 this evening. Not feeling really really nauseous still, but dead tired! |
Por qué, por qué, por qué?
Despite the fear of sounding as whiny as Real Madrid's coach Mourinho, let me just vent here a minute.
Why do they ALWAYS put me in hospital rooms with old ladies who snore like HELL!? I mean, no disrespect, but I can't fucking sleep. And I need to sleep. The doctors are planning on waking me up at 6 a.m., that is, in 3 hours, for my 2nd day of intensive chemo regimen and give me Ifosfamide (the I in the ICE aka the cherry on top of the cake) through the vein for 24 hours. I have already been warned that it's going to get nasty.
On a positive note: the passing day was a success.I had the IV drip of carboplatin only for a half an hour, and thanks to 7 different anti-nausea drugs, I had no side effects whatsoever. These nurses know their shit, fo'sho!
Why do they ALWAYS put me in hospital rooms with old ladies who snore like HELL!? I mean, no disrespect, but I can't fucking sleep. And I need to sleep. The doctors are planning on waking me up at 6 a.m., that is, in 3 hours, for my 2nd day of intensive chemo regimen and give me Ifosfamide (the I in the ICE aka the cherry on top of the cake) through the vein for 24 hours. I have already been warned that it's going to get nasty.
On a positive note: the passing day was a success.I had the IV drip of carboplatin only for a half an hour, and thanks to 7 different anti-nausea drugs, I had no side effects whatsoever. These nurses know their shit, fo'sho!
Tuesday, May 17, 2011
Ice ice baby!
Laura vs. Mr. Hodgkin's. Round 2.
I had my doctor's appointment this Monday and was given some bad news. After various blood tests, biopsies and CT scans, they've come to the conclusion that my cancer is back. It seems the radiotherapy given to me in January and February wasn't able to eliminate all the cancer cells, and now the disease has spread from the lymphatic system to surrounding tissues and bones.
Tomorrow, 18th May 2011, I'll be starting with a salvage chemotherapy regimen called ICE. It's an in-patient intensive treatment, so I'll have to stay in the hospital for three days. If this protocol works, I'll be doing it for 3-5 cycles every 21 days and after that a stem cell transplant.
I'd write more but my brain is blank. Crazy times...
I had my doctor's appointment this Monday and was given some bad news. After various blood tests, biopsies and CT scans, they've come to the conclusion that my cancer is back. It seems the radiotherapy given to me in January and February wasn't able to eliminate all the cancer cells, and now the disease has spread from the lymphatic system to surrounding tissues and bones.
Tomorrow, 18th May 2011, I'll be starting with a salvage chemotherapy regimen called ICE. It's an in-patient intensive treatment, so I'll have to stay in the hospital for three days. If this protocol works, I'll be doing it for 3-5 cycles every 21 days and after that a stem cell transplant.
I'd write more but my brain is blank. Crazy times...
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