Happy Family Day!

Sorry for not updating sooner, things have been a little hectic. Since my last post, I was moved from my nice room in Oncology (which was in the new wing of the hospital), to Rehab (not so luxurious much older, shared rooms, etc). This move was for a number of reasons, the Oncology ward is for acute care only, and on this drug I was looking better and better, off IV more often as the transfusions were getting farther apart (one to two per week). So home or rehab were the options, and given I had just started walking again and wasnt ready to get up a flight of stairs at home or keep up with the energy of a four-year old, rehab it was.. They assessed me and I was assigned to short-term rehab.

Having realized I had spent all of this new year, 2011, in hospital so far, rehab was a nice change that came at a good time and brought a feeling of being close to home. The general feeling on the floor was "if you work hard and do your physio, you will be that much closer to going home". Even though its hard work, and frustrating at times, the more you practice and work on yourself, the easier it gets. Each and every day you see improvement. And that was the way it was, in everyone you could see the underlying HOPE, the excitement that the next stop was home. Not like that in Oncology, there one sees a general sadness, feeling of uncertainty; harsh reality is that its a hit or miss with cancer, with each individual..

So after a week in rehab, the plan was to go home this past Friday Feb 18th. The entire week, actually 10 days total, I couldnt have made my oncologist more happy, I had no blood transfusions (due to low hemoglobin in red blood cells) or platelet transfusions (without platelets blood doesnt clot and excessive bleeding and bruising can occur). Being transfusion-independent is one of the signs that the drug is working. This implies the number of cancer cells in the bone marrow, that were preventing it from producing the blood cells and platelets on its own, are decreasing. Less cancer cells means less transfusions needed; all thanks to the drug :)

HOWEVER, discharge day, Friday, I had a blood draw at the usual 6:30 am. My 54th poke since admission (blood taken daily). To my great disappointment, just as Konrad had finished taking all my belongings from my room to the car, the nurse said my hemoglobin was low today and she needed to hear back from the doctor before she could discharge me. An hour later, waiting around with Karolek, who was happy with the playtime with me but anxious to take me home, I got the news. I had to stay for a "top-up" before the long weekend. I needed a blood transfusion. I walked Karolek down to the car where Konrad was waiting with our dog Pepsi.

Lucky for me, Konrad is always good at distracting Karolek and kept him busy through the day, and my little guy didnt think twice about what had happened, and wasn't sad I would be home a day later. I am so thankful because all day my heart was breaking and mainly in the fear I had disappointed my son.. again.. But it was all in my head, and maybe I needed a day to go back to an (empty) hospital room and cry in self-pity.. Now I can laugh at myself but at the moment, looking out the window at the beautiful +10 C sunny day outside in February!, it was the worst thing that could have happened. A chain of other mishaps later, the blood finally arrived but not til 8 pm, and the transfusion ran through the night until after 3 am.

Saturday morning, waking up exhausted from the countless vitals checks the nurses did during the 6-hr transfusion, I had a much better mood. I told Konrad not to come get me this time until I was already out the door. Sure enough, there was another problem and I feared I would be stuck over the long-weekend due to hospital policy. Luckily the nurses were able to contact the doctor that was on-call to write me a new discharge order (the one they had for Friday had gone void when the transfusion ran past midnight -they hadnt thought that one through!). So I was free to go, and I WAS HOME EARLY AFTERNOON SATURDAY :)))))

Big adjustment, but ITS GOOD TO BE HOME. We went to church today, and there was a show on for kids after mass, and it was so nice to watch Karolek participate and take pictures with the actors afterwards :) He sat eagerly through the entire preformance and when he came home he wanted to put on music and dance like the actors did (he especially loved the 'pretty lady' actress that danced with a ribbon in hand to a fast-beat song and made the puppet wicked witch start dancing and promise to be good from then on). Beautiful message in the show: in DANCE, love, laughter we find the medicine that will turn evil into good, that will heal all pain. 

Karolek with Actors after the show

Happy Family Day everyone. Hope you spend it with the ones you love.

Xoxo,
Paulina

New life: Two weeks on Crizotonib

Hello. Paulina here :) I was slipping away there for awhile.. I thank God each day for where I am today. I have been taking my 'Angel' pills, as I call them, for 2 weeks now. Why Angel? They are three pills that come shaped as two ovals (wings) and a circle (halo). Three magical pills that I take twice a day. And they have helped.

Within 48 hours of starting this drug, the fevers that have drained me every single night for the past 2 months, were gone. My cough, which I had since September, was gone after about a week. I was given a new life.

I have been catching up on much needed rest, sleeping 12 hours at night and taking naps during the day. The challenge now is regaining strength, as having been bedridden for the past month took its toll on my muscle (non-existant). Good news is, since starting the drug, my weight is up from 38 kg to 42.5 kg today. Appetite is great, my head is clear again and what more can I ask for. It will take some time to bounce back, but I am happy to now be doing physio here at the hospital. Each day I walk a little more.

This past Tuesday, February 1st, our son Karolek turned 4. I realized as we were celebrating when he came to visit me at the hospital, that had his birthday been 2 weeks earlier, I would not have been there mentally. I realize only now what bad shape I was in, I dont remember things: for example a nurse came up to me and I didnt think I knew her -she said she took care of me while I was very ill. I have no recollection of her at all. A very scary thought. I was on so many drugs, but also the fevers just wore me out.. The cancer in the bone was progressing fast, and I was literally slipping away. But on my son's birthday, what a reward that I hung on.. and the drug arrived. What a joy to see him so happy and to be able to hug him tight :)))))

Thank you all for following up on my condition, your support, kind words, and messages have meant so much.

Believe in miracles,

Paulina