Always look on the bright side of life

Always look on the bright side of death.

Every day I try to stay positive and look at the good things that have happened:
- I can walk without a cane now, I don't need a wheelchair anymore
- My CRP levels have steadily gone down without the help of antibiotics or anything
- My hemoglobin levels have stayed the same and not sunk, which is great, I'm still anemic, but not that much at least
- I can eat and drink without any problems
- My legs and hands aren't as swollen as they were
- I have regained the use of my right hand, which is amazing

But.

Still I can't help but be afraid of what they might find in theiir biopsy of my small intestine. Do I have cancer? What if I have cancer? Do I need chemo?
I'm 23 going on 24, can I even be released from hospital for my own  birthday party or do I have to stay here that long.
Will I live to see the day that I turn 30. Will I ever have children and see them grow up. I would love to have children, I want to see them grow up. I don't want to be under 30 with a deadly disease.
Who would even want me? Who would be so sick in the head that they would want to fall in love and marry a woman who's always sick and might die and leave them a single parent?

These questions keep running through my head and I cannot shut them down. I wish I could. I wish I could just have an off switch for thoughts like that, but I don't. I try my best to be happy and positive but I'm so afraid and feel so alone in the evening and just want to fall asleep and wake up healthy and above all NORMAL.

Some good and bad news - maybe?

Yesterday was a really hectic day. I knew I had a school thing to do and had calculated that everything would be done here in the hospital by noon so I'd have three hours to write the thing. Yeah never gonna happen! I was shipped from one examination to another so that by the time I started writing, I only had twenty minutes time.

I thought, no problem, shouldn't be too difficul, but by the time it was almost three pm, my doctor came into the room and told me the good news - they had gotten the results of the PET scan and it had shown something that might explain why I suddenly have all of these blood clots everywhere.

'However, the bad news is that what they saw in the PPET was an abnormality in my small intestinesm which could mean that my PTLD might have come back, It could also mean a variety of other things, including a copletely different cancer, or who knows what,They need to take a biopsy to make sure what it actually is, but right now they don't know what would be the best way to get the biopsy, since it's deeper in my small intestines than what my PTLD was. They also don't know when they're going to do to the biopsy.

I'm actually quite scared now. If it's PTLD, no worries, I might stil not need chemo and the Rituximab will be enough to treat it, but when my mom had her first ovarian cancer, it sstarted with blood clots all over her legs, and I'm really scared that I might have some other type of cancer now and will need chemo and everything. Then again, it could also just be a small wound that's bleeding...

I'm scared that I might die young. I'm scare that I might die. The only thing keeping me poisitive is the fact that they don't know what it is until they have done the biopsy.
Plus all my amazing friends and family who've supported me so much during this time, I love you guys and my dad to pieces, never forget that!

The day that my mother died

My mother was an absolute survivor. The first time round. She got ovarian cancer when I was still quite young, so I didn't really know what was going on, I didn't really bother myself with it and I had all my kid things to do so I was really out of the loop. Not to forget that I have forgotten most of my childhood, there are huge gaps in my memory. But I remember she was a survivor. She was tough enough to get through one of the worst cancers for women and stay strong afterwards. She always was a tough lady, beautiful, kind, caring and never would show her toughness, but it was on the inside. She was mentally strong. An absolute survivor.

But then came the second time. It started with a horrible pain in her back, and as a doctor, she immediately thought that it might be kidney stones or something similar. She had been without cancer for over five years and that mark was something that for most people meant they wouldn't get the same cancer again. So she never considered the possibility of having ovarian cancer. Again. Without a womb or ovaries.
The pain was caused by a massive tumour that was blocking the tube between one of her kidneys and her bladder. Then they noticed the other tumours. All of them. They had probably started in her stomach lining and metastasised from there. But she was tough, tougher than ever, she went through chemo again, she went through every possible cancer treatment available and out of all the pain and suffering and side-effects the medication caused her, she never showed a sign of giving in to it.

She even went to work for all the years between 2003 and 2008 with metastasised cancer and working tougher than ever to get her goal: work for long enough so her pension wouldn't diminish. Because here, her pension is what is halfway left for the living after someone passes away.

My mother knew after a few years that she wasn't going to survive this one, she didn't tell it in the beginning, but after about four years she told us, me and my dad, that she's sure it will not be cured. Because they had gone through all the best chemo medication in the beginning, and nothing had really worked, then they had started with all the older, less effective drugs to try and cure her, but nothing worked. Everything worked partway, but not enough to kill the damned cancer cells.

In 2008, even I got pretty sure she wouldn't survive it. She didn't look happy anymore, she was bullied by her own mother who mostly relishes on other people's misery, and my mother didn't have the strength to say no, shut up, go to hell, to her own mother. I saw her go from the best and brightest and strongest, to the best, brightest and sadly the weakest. She was beautiful to the end, but she wasn't strong anymore. Then in August 2008 she stopped working and got on full time medical leave. I didn't see her much for those months. She was taking a lot of painkillers but she was still in absolute agony, and her inner strength didn't allow me to see her like that. At least, I think that's the reason. She let my dad see her, but it wasn't a surprise, they were always meant for each other - true soul mates. But for me, it was different. I was her only child, a child that doctors had for years told her she could never have. So she didn't really let me see her like that.

On December 6th 2008, my mother collapsed trying to get downstairs. We called an ambulance and she was sent to the Women's Hospital in Helsinki. She had two pulmonary embolisms, she could hardly breathe. My father drove to the hospital after the ambulance and stayed there the night. I took my bike the next morning and went as fast as I could to get a bus to Helsinki so I could see her again.
I don't know if we thought of it, but I know I was afraid she might die before I get to see her, so I had to run from the tram to the hospital. She was smiling, and she hugged me, and I didn't remember to say I love you mom to her, and I regret that so much. Because that evening, when we had left the hospital and my dad was about to call the ward to ask how she was doing, the phone rang.

They told us my mother had passed away. She had died in her sleep. A peaceful death with no pain. I collapsed against the oven in our dining room crying and my dad sat down beside me and cried as much as he had never cried. Then we drove to the hospital to see my mother one last time. I couldn't touch her. I stood right next to the bed, and wanted to hold her hand, to hug her, to say I love you, but I couldn't. I just cried. We both did, but my dad had more strength than I did and hugged her.
My mother died in her sleep on the 7th of December 2008. Exactly seven days before my 18th birthday. I will never forget it. And I don't think I should.
 

She was the most marvellous women I have ever met, beautiful in every way imaginable and that's how I will always remember her. The woman who smiled through the pain, through embolisms, the woman who showed me I could be strong as well, and taught me right from wrong and showed me the way to be a kind, loving person. She was my idol. Though a daddy's girl, my mother is my ultimate idol, and I love her forever, God bless her soul.

For God hath not given us a spirit of Fear, but of Power and Love and of Sound Mind.

Heart Transplants and Heart Tattoos

So I've probably never told you, or more like, I know I've never told you, that I'm a transplant patient.
When I was 11 years old I was diagnosed with severe dialated cardiomyopathy which basically meant that my heart had grown to almost the size of my ribcage and didn't pump blood very well anymore.
I didn't have any pains, just a lot of arhythmia and I felt sick all the time (wanted to throw up constantly).

For the first few months I was in the children's hospital in Helsinki in the ICU (Intensive Care Unit) and then the heart ward and got heart medication from the start. I was put on the transplant list, but I was taken off of it, when I started to show signs of recovery. I was sent home with a large amount of medicine to take and I felt slowly better again. I wasn't allowed to participate in gym or anything of the sort, I wasn't even allowed to go to school with the bus, I had to take a taxi so I wouldn't strain myself and my heart.

However, in March 2002 my condition crashed. I got such a huge amount of arhythmia that day (maybe the 22nd, can't remember) that I mentioned it to my dad and off we went to the hospital. There they told me that my condition had gone down to where we started at 9 months earlier. So I was put on the transplant list again, as an urgent case. I dont' remember how long I waited, but it wasn't days or months, it was only a few hours and off I went into surgery. My parents were sent home and there they said they just walked around the dining room table waiting for the phone call to tell them I'm alright and have a new working heart now.

Of course, it's never quite that simple. They did get that phone call, I was alright, I was happy, in terrible pains and in a huge opiate cloud, but happy to be alive and happy to know that from now on I can live a normal life again.

Again, not quite that simple. Every day I have to take a large amount of medication to keep me alive. Some of them, only a small portion, is for antirejection (rejection is when my white blood cells attack my heart because it's not a perfect cellular match to my own cells and see it as a foreign object). The rest are for a number of other things: blood thinners so I don't get blood clots, blood pressure medicine, because the antirejection meds cause high blood pressure, and colesterol meds because again, the rejection meds can cause high colesterol levels.

Actually, I've been quite fine using these meds for the past 11½ years now, but hospitals and me don't get along anymore. Now I have anti-depressants for both depression and anxiety problems, anti-anxiety meds and as a backup, sedatives, because I've had such awful experiences in hospitals, and after so long of taking blood samples, my veins are non existent. I have had some wonderful times in hospitals as well - kind people treating me and giving me the feeling that they know what they're doing and really want to help me, so as a rule, I'm not complaining, but even the idea of having to go some strange ward in a strange hospital makes me cry. I am crying as I'm writing this.

I have had a small small tiny little rejection twice. Once right after the operation, which was ordinary, since they had to see what doses of meds to give me, and then after six years from the operation, and then they switched Sandimmun to Prograf. That made me very happy, because I hated Sandimmun with all my heart. It smelled dreadful and tasted even worse, and it caused both hair growth (everywhere) and enlarged gums. So I basically had no visible teeth and a nice big moustache. Never had a unibrow, but my eyebrows still go all the way to my hairline on the sides! Also I still do have a moustache. Jees I'm more hairy than most Finnish men! Thank goodness for razors.

Another medicine that gave me a lot of issues and a lot of self-confidence problems was cortison. I was a real example case of the worst possible visible side effects - I grew to a balloon in about a month without eating almost anything because I still felt sick after the operation. It was all water that was being stored in my body. That's the reason I have so many stretch marks all over my body. I was a huge hairy balloon from sixth grade all through to ninth grade when I sort of levelled to normal and then got a short lasting eating disorder. I was never skinny, I never lasted that long, but I did go from L to S in a short time period.

My transplant has given me a lot to think about over the years, and though I am and will always be so grateful that I am alive today, and that someone out there was kind enough to be donour before they died, and saved my life, I have gotten a lot of trouble from this as well. When I caught mono in winter 2009, I never would have thought that that virus (EBV: Epstein Barr Virus) would cause me a cancer. Last spring, in March actually, I was diagnosed with PTLD - post transplatic lymphoproliferative disease - which meant that I had B-cell lymphoma. Cancer in my lymph nodes.

Thankfully, the treatment I got was less harmfull for me than what chemo would've been, so I was lucky in that sense, but it's not yet sure if the cancer is all gone. Right now I am plagued with pain in my jawline which is caused by an enlarged lymph node (over a centimetre large!) and the results from my previous enteroscopy still showed signs of possible lymphoma so now I got a new enteroscopy and will hear about the results hopefully next week.

Maybe now it is sort of clear what has happened in my life and why I am on anti-depressants, which I should have been on for years already. I just refused to believe I was depressed, though I thought about suicide more than once. More than a hundred times I suppose. I knew I could never do it, because of my dad, I couldn't leave him lonely, with a dead wife and a dead daughter, and two very difficult dogs.

I am a survivor. So is my dad. So was my mother as well after her first cancer. We're all survivors and I will do whatever it takes to stay on this planet. In this world. But it's not always easy, it's not always simple, and most of the time, it's really painful. 

Hopefully this clears up somethings that I'm sure some of you at least have wondered about if you have read my introduction, or know me in real life.

The best smoothies I've ever tasted

When I got into my smoothie craze last spring (because I  just couldn't eat normal food) I started looking for the best smoothies, since, big surprise, they were the only thing I could eat. I did put extra ice cream in each, because the cancer was making me lose weight at a very unhealthy rate, so remember that these are the original recipes without my added three hundred grams of ice cream.


Remember that these do not represent 1 serving, these are just my measures from when I used them, so keep that in mind.

Simple Berry Smoothie:
1 packet of mixed frozen berries
1 can of peaches with juice
4 tablespoons of honey
2 dl of yoghurt (optional)
-Remember to cook the berries before use unless you've picked them yourself, don't want a bad stomach do we?
-Mix everything in a mixer or any other way you find good

Strawberry-Banana Smoothie:
2 cups of strawberries
1 banana
3 dl yoghurt
1 dl milk (optional)
-Remember again, frozen berries may contain bacteria you don't want, so cook'em
-And again mix everything

Banana-Pineapple Smoothie (or maybe more a fruitie)
1 banana
1 cup FRESH pineapple cubes
3 dl pineapple or apple juice
-I'm going to stop giving you hints now

Breakfast Smoothie
1 banana
1 cup berries
1 cup yoghurt
1 cup oats

Green Smoothie
2 cups green apples
½ dl spinach leaves
3 cups yoghurt

Peanut butter-Banana Smoothie
2 bananas
2 cups milk
4 tablespoons peanut butter

Day VII: Medical updates and news

So, the biopsy results from my enteroscopy in September finally came a day ago. They showed that I still had some abnormal cell growth, aka cancer, but that the samples were too small or degraded or something not to give an ambiguous result, so now I am going to have another CT scan (computer tomography for those who don't know, it's like an x-ray just better and uses iodinebased contrasting agent) and a new enteroscopy (it's a procedure where they go through your entire digestive tract with a tube, camera and a biopsy snapper). Thankfully the enteroscopy is done under anesthesia, so that's no problem.

I will have to get a new IV done though, because both procedures require one, but thankfully my doctor already promised that I'm allowed to be really sedated before they try to put the IV, since I tend to have panic attacks when they don't find a vein. And they never find a vein, I have such crappy veins it's not even possible hitting them the first time round. So yeah, sedation. Tranquillisers.

Also some paindoctorperson is going to think about the painkillers I'm using, since they don't like me getting injected all the time. The pills don't seem to work and there are no opiate patches with oxycodone, just phentanyl and I hate phentanyl, so...yeah, we'll see what they come up with.

And I'm going to see a shrink in about half an hour. Because I wanted to see one. Because of a reason I can't remember anymore.

Also this all probably means I won't be getting out of hospital for quite some time to come, but thankfully I've managed to clear things up with a couple of teachers....I'm just really nervous about the rest. Because I'd really like to FINALLY get my BA out so I can start concentrating on other things. Like doing smething worthwhile.

I also bought this t-shirt last night just for the fun of it:

Day V: Bad news

I am not lymphomafree as I previously thought. My temperature is being kept down solely by paracetamol. My lymphnodes are still enlarged. I can't eat properly, everything hurts.
I may have more lymphoma. I scared and I get massive panic attacks.

I hate my life right now.

Day I: A week here already

I decided to start writing again with a new blog, since I have nothing better to do here in my hospital room. I am 22 years old, heart transplant patient, cancer survivor and now out of the blue sick again. With something. The doctors seem a bit puzzled.
I am also a young woman with a nice body form but that's where it ends. I am chubby, have been fat and due to both fat and high doses of cortisone, I look like a ninety-year-old woman under my clothes. Cellulite. Stretch marks. Huge huge stretch marks.
At the moment I weigh in at 69,2 kg. Which is for my height of only 162 cm way too much, and am hoping to lose (at some point in the future) 15 kgs.

As I am sick now, in hospital, not capable of moving much since I'm not allowed to, I won't exercise. And dieting is actually unbelievably easy right now, seeing as I can't eat really either. You see, my biggest problem is a horrendous pain on the side of my throat, neck and in my mouth. So food - no way can I eat food.

I've been surviving on juices, berry soups and weirdo nutricious drinks for the last five days, so I should be losing some weight soon.

I'm a university student and tend to put on weight when each school year begins, mostly due to alcohol, seeing as we party quite a lot. Luvvvv it.
Sadly it does nasty things to my body, so yeah....change coming now!

I'll be writing about both my weight issues and my medical issues here, and will be posting just random pictures as well (not of me though, keeping my pricavy for now). I will say I am writing from Finland, and Frankie really is my nickname.