16 October 2013

Dear Friends (and other stumblers),

It is most definitely time for an update!

I’m home now… for good! The weeks following my 3^rd and final treatment were not the greatest so I stayed in the hospital for a while. I was discharged on August 29^th. I felt significantly better with every day that followed. A week later I started school.

In May, when I was diagnosed, the doctor told me right away that she was very optimistic and would hopefully get me out before school started. So I had that goal in mind and voila!, only missed the first week of school. To my teacher’s amazement (and probably amusement), my mom attended classes for me so I would not miss a thing!

Some of you are thinking ‘Oh, no! Take it easy, don’t start school right away.’ Of course I need to be careful and start slow and not stress myself. Therefore, I’ve cut my load in half. I’m not attending the University this semester, “only” music school. I’d hate sitting at home having nothing to do.

This is supposed to be a very fun semester. I’m taking violin and piano and finishing music history, harmony and counterpoint. Then I’m taking part in different orchestras. In September I played with the Icelandic Youth Symphony Orchestra. It was so much fun! We had an intensive rehearsal schedule but we finished it off with a concert in a grand music hall in Reykjavik. The funniest thing is that I signed up for viola! In April, when I signed up I thought I’d have the summer to practice and adjust to a new instrument. But instead I had a grand time playing out of tune and enjoying confusing moments while trying to read alto clef. Anyways, all is well that ends well. I believe I got the hang of it and did pretty well J

My mom teaches at a local music school. Last Friday her colleagues hosted a benefit concert for the hospital department for blood diseases. That’s where I spent most of my summer. The concert was such a good idea and a thoughtful and kind gesture to show my mom moral support.  

I’m home and happy to be done! Although I must admit that I miss hanging out with the hospital staff, I’d definitely do it again… in a different setting of course! I should visit them!

Now I’m on to new adventures… just different ones this time ;)            

PS. If you’ve ever thought of jotting things down in a diary, word doc or your blog, don’t hesitate (or as in my case, procrastinate). Take a few moments here and there. They’re so much fun to read later. I should take this advice myself. But I just read through the blogs I wrote while I was in the hospital, I seriously wouldn’t have remember 70% of the details if I hadn’t written them down. That’s today’s lesson folks! 

PSS. The weather forecast says that for some reason I don’t know how to explain, this winter will have exceptionally visible northern lights.  The photo you see above was taken last night and I copied it from Extreme Iceland.

June 27th.

I‘ve been home since June 9th. It has been really nice! I stay a lot more active here than in the hospital, obviously. 

My tests came out well and they couldn't find any bad cells. That is really really good news. On June 18th I started my 2nd round of chemotherapy. I had to go to the hospital twice a day to get the medication but besides that I could stay at home. Now the medication is working and my white blood cell count is gradually decreasing. When it reaches a certain low I probably have to go back to the hospital.

Esra is graduated and is home. He brought 6 good friends from Fountainview with him. It is very nice to have them here! Agnes comes today and I‘m excited to see her as well.

Next weekend the church has its annual camp meeting. It is held at the campus where we live so there will be a lot going on. I hope I don‘t have to go in before this weekend but we‘ll see.

I can’t thank you often enough for your prayers and your support!!! I think I’m doing incredibly well considering everything that is going on.

11 June - HOME

I have now finished the first part of my treatment. On Sunday I got to go home on leave and sleep over. Then I went to the hospital the next day to get antibiotics that they inject, they also took a blood test and then I talked with the doctors and they discharged me. YAY! Now I'm at home and I get to stay here for a week. I'm supposed to rest, recuperate, exercise and most importantly EAT, EAT and EAT. (I love that last part since my appetite is back).

However, on Thursday, I need to go in for a blood test and a bone marrow sample. Please pray that the marrow sample will only contain healthy cells. That sample will decide how my treatment is continued. Then I'll come back home and enjoy a few more days of amazing healthy food, fresh air and really pretty green grass (it's at least 10 different green colours).

I feel really good and my strength is better and my immune system should be much stronger now. My platelet count, white blood cell count and all the counts that matter have sky-rocketed so that is a very good sign. Unhealthy bone marrow shouldn't be able to produce what mine has been producing.

Thank you again, I can't thank you guys enough for your support and for praying for me. Please continue to pray and specifically for the sample they'll take on Thursday!

Sorry, I can't make this longer... I have to go EAT. ;)

30 May - day 16

There is not much news to tell but I thought I should give a short update in case any of you have started worrying :) I haven't written for more than a week now for one reason only - laziness! In fact, I haven't turned on my computer since May 21st, and that is probably a record for me. But I've still checked Facebook and emails on my phone. Thanks again for your greetings and for checking up on me! It's heart-warming ;)

Today is my 16th day in the hospital, I can't believe it's been half a month already. Today is also day #7 post treatment. My white blood cell count is still dropping and hasn't reached the bottom yet, that is pretty much what I'm waiting for. 

In the meantime I have to be careful. Like I've mentioned before, I'm in protective isolation and don't get visitors besides closest family. My appetite hasn't been great in the past days. Those who've seen me eat in the past would have a hard time believing that it took me an hour to eat one waffle. Mom has been baking these amazing waffles that I eat for breakfast. Surprisingly, they are really easy on my stomach. That's another thing, my stomach is pretty messed up because the treatment affects the mucous membrane. Stomach issues are most definitely the most annoying side effect. 

The doctor has me on nutrition through an IV to substitute the many things I'm not eating. Still I try to eat as much as I can to keep my digestive system running. I need a lot of calories to prevent me from losing weight and the strength that I will need to recover. But these days it's pretty much just waffles for breakfast, soup for lunch and the weirdest... yes weirdest cravings for supper. 

I LOVE eating (when I'm healthy), and I eat a lot and there are so many things I can't wait to eat when I get out of this. When I don't have to think about my stomach or this neutropenic diet thing I'm supposed to be on... then I shall have a FEAST. I'm already making a list!!!

I moved again. Now I'm in the last room in the hall and it's a little bit smaller but it's cozy. I have my bed, a nightstand, a lazy-boy for visitors, my private bathroom and shower, a tv, 2 closets, a clock, a tray on wheels for all my food, and a BIKE. The PT brought me an exercise bike so my parents can work out when they visit. Haha. They do, but it's meant for me. It's good to get my blood flowing since I do a lot of sitting and laying here.

I went out once the other day. I put up my fancy green mask and went for a short car ride with my parents. It was nice to see the 'world' again. Hopefully I can go again soon. 

May 21st

I thought I should give you guys a short update before I go to bed. It is not going to be very exciting but it's good for me to make a recap of recent events.

I came into the ER on Wednesday the 15th and spent the night in ICU. The day after I was moved to a different hospital and spent 3 nights in the cancer ward. On Sunday, I was moved to the 'correct' ward. Everyone here is dealing with blood related diseases, it is a little bit like a ghost town because all the patients are supposed to keep in their rooms. We're all making sure we don't get germs and infections. So I've been here 3 days and haven't seen any other patients... not even in the hallway. 

As far as my treatment goes, I'm  on chemo bag #6. It's pretty incredible to think I only have one bag left and the first treatment will be over. 'Over' is still a big word because I'll be at my weakest when it's 'over'. Then I will need about 10-14 days to restore my white blood cell count. Hopefully they will be healthier this time. I will then need plenty of rest before they start treatment #2. 

Like I mentioned, I can't believe it's day #6 already... I thought time would pass slower. 

My appetite is really strange. The therapy is affecting it and I'm also taking anti-nausea meds. I'm becoming a REALLY picky eater. I eat what I can of the hospital food when it looks, smells, and tastes ok IF I think it will help my health. Lately everything has been smelling funny but thankfully I have a drawer full of goodies from home and friends. 

This morning I went back to basics and had baby food and cheerios. For some reason it was the BEST! 

Today I laid my eyes on a jar of kalamata olives that friends had sent. There was no turning back, I had olives with everything today. It was amazing. 

The bottom line here is that besides my funny appetite, I'm feeling fine. I'm actually enjoying the down time at the moment (although I know there's more than enough to come). The days are passing quicker than I thought they would, the nurses are INCREDIBLE people and all your greetings have been brightening my days. 

Thank you!

May 18th

Thank you, thank you, thank you! All your greetings and encouragement really made today pass a lot faster! :) Technology is so amazing and I'm enjoying it a lot these days.

It made my day to hear that individuals, groups and even whole congregations are praying for me in at least: Iceland, US, Canada, England, Denmark, Greece, Austria, Italy, Germany, Switzerland, Sweden, Norway, Holland, Mexico, Australia etc.

It really doesn't matter where the people are located or how many countries they represent, it is encouraging to me and means A LOT.

Since I mentioned technology, just as I started writing this my good friend Nancy sent me a photo of my brother singing with Fountainview! She happened to be in the same place as he. Very cool.

Then the Children's Sabbath school in the nearest church made me a sweet little booklet with greetings from the church members. It's now hanging on my wall :)

 Then for no reason I'm posting the painting of the yellow bird that is also stuck in this room.

 Then my friend Tinna Sól made me a photo with verses that her mom picked :)

I'm in a much more stable condition now, and it seems like I'm responding OK to the treatment. We won't know for sure though till the first part is over and they can do some more extensive testing. But my worst condition will be the 10 days after each treatment.

At least I can walk on my own, and practically do everything myself. I don't know what to expect in the next weeks so at the moment I'm trying to move around as much as possible and keep muscles active and flexible.

I've been injected with so much medicine and so much liquid, I'll be surprised if I don't explode soon. Like really, I feel so full but I know I have to eat. The nurses are monitoring me and will make sure I won't start storing too much liquid.

I think this will do for tonight. Thank you again for your greetings, they are so much fun to read!

May 17 - new chapter - bizzare

It's May 17th - heya Norge day! There are photos below.

So why not just write about it publicly?

The past two days have been eventful, I‘ve tried some cool things and some not so great things. Since Wednesday morning I have fainted... 3x, visited a clinic before its opening time, had the second blood draw of my life... followed by TOO many... WAY TOO MANY. My veins were so pretty and fine they couldn‘t even find them and when they got to them they couldn't fill their little cup. Needless to say, my hands are pretty blue at the moment. Ok, back to my list... I also met incredible and handsome, caring doctors and nurses, stayed in the ICU where a nurse was dedicated to only me.

UPDATE: I can't believe I forgot to say that I got to ride in an ambulance... between the two hospitals. It was pretty cool. 

Then I had a huge needle inserted that sucked out a sample of my bone marrow. I was so drugged I can‘t remember a thing... thankfully! I asked the nurse later, and she said I’d squeezed her hand pretty hard. Then I also have a thin tube in my chest, below my neck so they can shoot and draw straight through so there won‘t be any more needles for me. YAY.

So you’re probably wondering: What’s going on? I actually finished this blog post and then noticed I had never mentioned it. Well, I came into the emergency because I had fainted at home, felt dizzy and could hardly stand. The doctors ran tests and my blood work was all messed up. I hardly had any platelets... which is dangerous. A minor cut and I could’ve bled out. Then they found that my white blood cells didn’t look all too fancy. Too many of them were immature and multiplying to fast.

My diagnosis is ‘acute promyelocytic leukemia’. Or since I'm becoming so familiar with medical terminology, we can just call it APL-M3. Haha. It is so acute that I’m already doing my 2nd day of treatment. This disease in particular has been researched a lot in the past years and the treatment has been dramatically improved. Patients my age in particular, tend to do really well so that is good to know.

I‘ve stopped counting the number of glasses of beetroot juice I‘ve drunken.  They actually have pretty decent vegan food here. I must say I was surprised. My mom does supplement it though with the many missing things. I’m in protective isolation so they’d rather not let me have visitors at the moment, only immediate family. I’m sensitive to infections so the food I get is even specially prepared. Everything has to be cooked to make sure there are no germs in it. Pretty much desensitized. The variety of fresh food is limited. I shouldn’t have vulnerable foods like salad. But I’m planning to eat a lot of fruit tomorrow. I can eat have it if it comes unsliced and unpeeled. I’m craving an orange.

My cousin came and cut my hair today. I like it, I was planning on cutting it short for the summer and there’s no way I want to be washing and brushing the crazy hair I had before.

I’m glad to have my own room, it’s spacious with big windows and a painting of a yellow bird. There’s a lazy boy for my lazy of visitors, who yet haven’t received permission to visit ;) Then there’s a 2^nd bed for when my mom wants to nap.

This is all very new and happening very fast so I’ll just have to adjust fast (never really had a problem with that). Now comes the Golden Globe part: I of course want to thank my very supportive family for being awesome. Also, the most incredible hospital staff that is genuinely caring, supportive and intelligent and takes the time to do whatever my mind comes up with (nursing friends and students... make sure to be that way!). Then there are my wonderful friends who are unfortunately/fortunately (not sure which) spread all over the world. I’m comforted to know that so many are praying for me, even people I don’t know.

It will be interesting so how this goes. It’s a big project but the doctors are positive. I pray that God will guide their minds and that the treatment works for me. The scary part is all the side effects and possible damage; I really hope it goes well. 

I just need a big project to work on this summer. Something fun, challenging and computerized. I’ll definitely brush up my German, and maybe I should learn Spanish. Who knows, maybe I will have knit a sweater for you all by the time I get out of here... or painted a gorgeous piece of art (yes, don’t worry... that was a joke).

WayAnne, darling, I don’t have an excuse anymore.  I promise to reply to your emails.  

PS. pray please

PSS. I'd love if you'd comment or sign the guest book so I know who you are ;) DO IT NOW!

The 'ready to take a stroll down the hall' look.

Yes? No? Yes? No? Not a chance!

The gadget lady who is learning so much new terminology. Be happy you can't see my pants. LOL.

Keeping the lazy-boy warm.