As many of you have read in Konrads posts in My Story, I have recently been facing a new challenge, a bump in the road to recovery. My condition has been going from bad to worse, I am frail (most of what is left of my energy goes to coughing) and what is most frustrating is that doctors that have been following me are still scratching their heads wondering what this might be..
We were back in Toronto General yesterday to see the respirologist that I have been seeing for the past month. He performed this bronchoscopy and the one prior and he told us that they managed to get 'okay' sample this time but unfortunately the results of the test were inconclusive.. Pretty much everything they tested for has come back negative so far, as in the previous Bronchoscopy, and as the doctor said, "NO BAD NEWS IS GOOD NEWS". We'll take that. But it still doesnt tell us what we are dealing with.
For now, seeing my deteriorating condition is of great concern to this specialist (thankfully). Rather than subject me to more tests at this time, he decided to start me on a therapy for the condition he has recently come to suspect. It is an auto-immune condition that is a side-effect to stem cell transplant/chemo, called BOOP -- Bronchiolitis obliterans organizing pneumonia. My oncologist has backed up this idea. Basically they will try and see if it works and they can take me off it if they dont see improvement. For now they want to try for a month and see. So I got started on a corticosteroid that has a long list of unpleasant short and long-term side-effects including immune-suppression (so high risk of infection). However they feel that the benefit I may get from this as I am very sick outweighs all the risks.
My new everyday motto that has been a blessing to live by, has been to just take things ONE DAY AT A TIME. Its the best we can all do, try and live in the moment. If its a bad day, tomorrow may bring a new perspective; if its a good one, embrace it, tomorrow what brought you that happiness may be gone. And what good does excessive worry bring anyways? A friend once told me in Florida, in a time of such uncertainty our lives, we went there in search of an alternate cure for cancer just days after I had been diagnosed the day before Christmas (2009).. I was away from my son for the first time in my life, fighting for another way, and going in for a treatment they provide there. My friend took a look at my face, and knew that I was having a bad day. She knew I was prone to worrying, and said to me 'You know, worrying is just praying for what you dont want'. She definitely stopped me in my tracks and made me think..
Some recent pictures:
Snuggle time. My growing hero; with his hero -Bumblebee.
Hey Paulina and Konrad,
ReplyDeleteIf you would like, could you please send what they are thinking that you are currently dealing with? What their differential diagnoses are, as well as a brief overview of your symptoms?
I will have the doctor I work with who is very experienced take a look at it with me, and we will try to see if there is anything we can come up with. I realize that right now there are oncology specialists who know very well what they are doing, but if I could help in the smallest way, take a look at the results from a different perspective, I'd be more than happy to do so.
I pray for you, for the past year now, and I believe that God is listening to all the people who have been praying for you. Stay strong, don't give up, and believe in the power of your body's own ability to heal and fight for itself.
A book I recommend to you is written by a doctor who has written about his own patient's encounters with their miraculous recovery from cancer, here's the link, perhaps reading other's success in surpassing their cancer will be just what you need to keep your strong spirits up!
http://www.amazon.com/Love-Medicine-Miracles-Self-Healing-Exceptional/dp/0060919833
Keep fighting! And Konrad, let me know if there is anything I can do. (I can send you my private email)
I forgot to write that above post was from Karolina Juszczynska.
ReplyDeleteSome words of enouragement for Paulinka:)
"Przychodzi w życiu człowieka czas, kiedy dźwiga krzyż naciągnięty
bólem, cierpieniem, rozwianymi marzeniami, brakiem radosnych
perspektyw... Często ten krzyż go przygniata, ciężko jest wtedy wstać i
znaleźć sens dalszej egzystencji ale ja Ci mówię: wstań i walcz! To Twoje życie, Twój największy skarb." - M.Piotrowski
Thank You Karolinka....very moving words...
ReplyDeleteHi Paulina and Konrad
ReplyDeleteFirst thanks for following Maya's blog, thanks for your last comments Paulina.
Thanks for sharing your story, I had tears in my eyes reading it. Paulina somehow my brain has stopped working in the last couple of days, I have no words, but all I want to say is that I pray that this F&*$# cancer never comes back. That you and Karolec and Konrad enjoy life cancer free.
Sending lots of strenght, love and light your way
Indira
Hey Paula - I know we don't get a chance to see you guys very much but we do get updates and I wanted to make sure that you knew our thoughts are with you. Keep fighting the fight because your one day at a time motto is something that all of us should live. Each day is a magical one no matter how bad it seems.
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