Merry Christmas

This time of year is very emotional and as we reflect we feel so very thankful for our many blessings. May the blessings of this Christmas fill your homes and your hearts with joy, love and laughter!

The tree is up, still waiting for snow here. We take each day as it comes and we are looking forward to a relaxing Christmas. This one will also be a first for us with our new, now big, puppy Koko (who has already grown larger than Pepsi).

To all of you out there reading this, we wish you and your families a very safe and Merry Christmas & every happiness in 2013!

We will see you in the new year.

Love
Paulina Konrad and Karol

Glimmer of hope in NYC

Driving down to NYC today with the family to meet the principle investigator of a brand new trial to consider if I'm eligible. Feeling so privileged to get advice on next steps from this world renowned t-cell expert! A good day.  

whats new (and back to basics)

I'll try and make this a short and sweet update.

Sorry for not updating this blog more often to let you know how I am.

Truth is I have been a bit of an emotional mess and it has been really hard to get myself to write at all. But now that I've started writing what better place to start than to share some happy news. A recent (and unfortunately most painful to date) bone marrow biopsy has come back negative for lymphoma! This was a huge relief, especially when the doctors now fear the worst; that I will relapse as soon as I stop this drug :( As you can see there is a bit of a rain-cloud even over the happiest news..

The doctors are again having me reconsider doing an allogenic transplant. Because they think this could very likely be my last chance.. Aim would be to do it early as mid-September. So much pressure on me of late with making this decision. Do I pull the trigger on myself with high dose chemo and radiation to 'delete' my immune system and make room for somebody else's, a one way road with no return- I will be forever changed if I do make it out alive. All that I can think of is an 18 year old girl whose story I had been following, having found it as she was going through so much of the same as me. She is one of the not too many out there who have done the allo after sgn-35. She was an icon of hope for me, a strong girl to be looked up to in every way, and her family is now grieving as she passed away earlier this month due to transplant-related complications. Absolutely devastating.. And yet, despite all this, the words of the transplant doctor in Toronto echo in my head, when I asked - would it be worth the risk for me to do right now? He replied, "It would be more of a risk to do nothing". And I have been stopped in my tracks ever since...

In the meantime, we were happy to watch 2012 Olympics any chance we got - even if it meant tuning in during treatments, as it turned out, pictured below.

Thank you for your prayers, wishes and concerns. This summer has been a reminder to us yet again of how fragile health can be, and unfortunately of the gripping fear that overcomes us everytime we question it.. But somehow, one day turns into the next, and we continue to roll along.

AS A SIDE NOTE....

I've recently stumbled upon a book that addresses some of the anxiety I've been feeling. I highly recommend it to anyone who has ever wondered what they should change so that the cancer would not come back. After conventional treatment for a brain tumor at the age of 31, the author, an ambitious physician and neuroscience researcher, asked his oncologist that exact question.

His answer was perfectly stereotypical: "Go back to your usual way of life. It won't make much difference."

So he continued living his life as he had before, eating a diet high in sugar and red meat, exercising little, and abandoning an earlier interest in meditation. The cancer came back..

I got the same answer from my oncologist and while it did take pressure off of making changes in my life, I did feel deep down that there must be something I could do, or rather that I should be doing differently.

Reading this book, I recall Hippocrates' words that say it best (more meaningful to me having completed Hippocrates Health Center's life change program) - "Natural forces within us are the true healers of disease".

DEEP breath. Reading through this book (by an author who went on to live 20 years from the date of his brain cancer diagnosis), I thought I'd re-iterate some key points here for anyone who can benefit. I'll be the first to admit I'm no expert at this, in fact I'm angry at myself for not staying true to these things, simple as they sound, as I should. But I'm working on it, and thought it may be very worthwhile to share with anyone reading along with this blog, my journey with cancer. So I remind myself again --

• To pay attention to the breath. Simple breathing exercises can do wonders in stress management
• To live in the moment (rather than a general tendency to re-live the past or plan for the future).
• To get up and move. It may sound silly, but the more active you are, the more active blood will be against cancer cells :)
• To be positive. Healthy emotions mobilize our immune systems too. Feelings of helplessness and fear release noradrenaline (fight-or-flight) and cortisol (stress) hormones that in turn signal inflammation as if to repair a wound - what you get is an immune system that like you, has also given up :(
• Lastly, to eat healthy to stimulate our immune system and thus set up defenses against cancer progression and development. The list of anti-cancer foods is endless in this book and anywhere else you seek out ones that are anti-inflammatory (inflammation often drives cancer growth), antioxidants, that serve to detoxify, etc. I agree with the author -- 'Why not take advantage of this natural protection against disease?!'

If you're interested in reading the book its called Anti-Cancer: A New Way of Life by Dr. David Servan-Schreiber, MD, PhD.

Before I forget, speaking of living in the here and now, we have a new addition to the family, in the pictures below. Karolek gave him the name Koko.

He and our other Yorkie-Poo named Pepsi, are very much different in character yet loved the same, and have definitely kept us busy this summer! Just watching them play is both calming and elating. We cant get enough of them:)

It feels good to have finally come back here with a post. Somehow therapeutic in its own way..

On that note I leave you with a quote,

"Just watching an animal closely can take you out of your mind and bring you into the present moment, which is where the animal lives all the time". -Guardians of BEING

Happy Easter/ Wesolych Swiat Wielkanocnych!

A happy Easter indeed. And here I am finally having pulled myself together and sitting down to write a long long overdue update.

Since I last wrote, I have been faced with what seemed an impossible crossroads on the treatment front. As I mentionned in the last post (over a month ago), I have been torn with the question, as a fellow refractory cancer patient put it: 'to allo or not to allo (transplant)'. I am happy to write that I have finally found an inner peace with a most difficult decision and now embrace it with compete faith.

Every one of the many doctors I consulted during the past month agreed on one thing - that for me THERE IS NO RIGHT ANSWER.. Simply far too few patients with my kind of track record (ie heavily pre-treated including a past failed autologous transplant, with my particular rare kind of advanced cancer -refractory sALCL), to know what to do next with me.

At the end of the day I followed my gut and decided to take a leap of faith and not do the proposed allogenic transplant now. I opted out after weighing out the immediate risks, which include a high treatment related mortality. Shortly after I made this decision, I got approval for an extension on my current treatment!!

So happy for this; for now things with the current therapy are keeping the disease at bay which in itself is a huge improvement compared as you well know, to how I was doing this time in the past 2 years.. We are still unclear how many more treatments I will get. This depends on a number of factors (funding, my response to the drug and toleration of its associated neurotoxicity), so I will just have to take it one cycle at a time and we will see how it goes from here.

Other than all this going on behind the scenes, we continue to juice daily and I take various supplements mentionned before to help support my immune system, slowly decreasing from 10,000 IU daily of vitamin D3 now that I try to spend as much time out in the sun when it is out :) Feels so good to be alive!!

Konrad captures this moment in the sun, me and Karolek, Easter 2012

During Easter the three of us spent lots of time (and lots of eating) with our families, and for Karolek chocolate treats from the Easter Bunny were a huge hit with him after he for the first time, gave up chocolate this year during Lent. We also got a chance to have an Egg Hunt for him and his friends out in our backyard on a sunny afternoon. Thankful for all this.

Thank you to those of you I have reached out to for advice in this difficult past few weeks. I cannot tell you how much it means to feel the support I do from everyone around me. I have had many reminders to keep my faith strong. I heard a wise man recently say, 'we must exercise our faith like we exercise our muscles. And pray to God that he may give us our faith' :) Nice and simple, but it really hit a chord that stuck with me. A dear friend also reminded me of a song, 'Be not afraid, I go before you always, come follow Me, and I will give you rest'.. These words are among those that now resonate with me, and have helped me to restore my sense of peace.



Karolek brought this Easter card home from Junior Kindergarten


I pray that this Easter and the spring in the air brings you and your families first and foremost FAITH, PEACE and renewed HOPE. May God bless you all.

Thought this was well worth a share -
Strong words on how to survive, from a cancer warrior named Ann:

"Sometimes we are faced with doctors telling us

the odds at winning our battle are low.

Stop right there and grasp the situation and

don't let anyone set you up to fail.

Attitude is everything! Doctors are not God.

There have been many miracle stories

of patients defying the odds.

Go in there with an "I am going to win"

attitude and forget the stats.

You are an individual with inner strength

and the power to fight with all your might.

You are NOT just a number. Don't let the doctors cloud

your attitude nor your determination to win.

If you go in there with a winning attitude,

you have already won half the battle."

It was time for another SGN-35 treatment this past Wednesday, right here close to home:)

It was also time to start thinking about what happens next - how many treatments left after this?!

I am being restaged at this point to help design a plan..
1. Bone marrow biopsy (done) - results in 2-3 weeks
2. CT scan - March 7
3. Gallium scan - March 2

And lastly in the near future, I now have

4. Consult at Princess Margaret for consideration for allogenic stem cell donor transplant - Feb 29

Whereas it was previously not possible, I am now being considered in Toronto (in lieu of Washington) for a stem cell transplant.. I am not exactly jumping for joy (with heavy risk that this procedure carries with it), but do appreciate immensely the fact that time has given me this chance to do it here. As I have told my doctor, mindset is so much in the healing process, and being far from home when doing something this scary, made it that much harder for me to imagine how I could pull through it in the end. The isolation itself - alone in another country -would make it that much steeper of an uphill battle..

In the end which way we go from here only time will tell, but I have complete faith that God will continue to guide us on our way.
Positive thoughts lead to positive outcomes.

Belated Happy Valentines, love and light,

Paulina

Birthdays, Blues and Big News - got the drug in Canada :)

Finally a chance to sit down and put some thoughts down and update you on where we are.

The January blues have hit us a bit lately.. New year upon us, I guess it makes sense given everything we've been through since the start of my health troubles in 2009. Most of the time we get by living in survival mode (almost numb to the pain), but every now and then the huge emotional toll we have taken, catches up to us and its hard to pick yourself up..

The mild climate this winter (more rain than snow here) doesn't help either with our moods, and it feels near impossible to avoid the colds and flu going around.. Especially with Karolek in school. Poor little guy has had a bad cold he just cant shake off, and we kept him home from school this past week to be safe. I am more susceptible to catch everything, especially upper respiratory infections which I have again now :( Even wheezing today, not fun, and I feel weak and run down. The main side effect of SGN-35 that bothers me day-to-day otherwise is the peripheral neuropathy (numbness, weakness) in my fingers and toes. It makes any fine motor skills like writing/typing or opening jars or bottled drinks a bit of a pain - lucky for me someone is always around and willing to help :)

BUT In the big scheme of things, this all should be a non-complaint; it sure beats the alternative (not having the drug at all)! I know these drugs work differently on everyone, and for many before me the pain from toxicity of this drug is so high, to the point that the risk of irreversible nerve damage (some cannot walk!) outweighs the benefit of the drug, and they must stop taking it. But somehow, be it genetics, drug metabolism.. somehow I have been tolerating this current therapy. God knows my body has taken a beating with past, more invasive, and toxic treatments. Thankful for how my body reacts to this one and as always, one day one step one breath at a time.

As always we are so thankful for the prayers coming our way from our supporters. Please also keep in your prayers our friends' 6 year old daughter Maya, who has had a very trying time recently with a new therapy that she has started to treat her neuroblastoma. Our love to her and her family.

When I really think about it, on a brighter note, we have MANY reasons to be smiling these days!! A list of positives always helps lift my spirits..

1. Ringing in 2012, we were in the company of great friends; Truly blessed because this year we were NOT in hospital, and never more FULL of hope :)))

2. Bittersweet goodbye -- Last time in Rochester (Wilmot Cancer Center) for SGN-35 on January 5th.. Thinking of this place will always bring a smile to my face - in my darkest hour they went out of their way to help and thanks to them we are where we are today.

Karolek accompanied us on only 2 of 13 trips to Rochester,
the first (April 22, 2011) and the one shown here, the last (Jan 5, 2012).

3. Finally! -- Got SGN-35 this week, right here in Trillium Health Center!!!

Overall, I'd say a very great start to the new year. We are so thankful and happy not to have to worry about getting to Rochester in snowy or icy conditions.. Huge relief to have this stress gone.

First treatment of the new year.

After months of hitting brick walls, my drug navigator who has been working almost exclusively on getting this drug for use here for me in Canada, finally found a way! More on this in later post (it wasnt OHIP). I have been approved for 3 treatments here in Canada that will bring me to the total of 16. What happens beyond that is uncertain. Dreaded bone marrow biopsy and the works with scans for re-staging are in order, after the next treatment.

For now, we focus on getting through the winter months, it has always been the most challenging time for us in the past. It certainly helps having something to look forward to. Konrad's birthday was this week - Happy Birthday to my supportive, loving all-round wonderful husband! - and there are weddings, baby and bridal showers on the horizon (that we are very excited for). But lately all we hear at home is 'HOW MANY DAYS til MY birthday?' -- thats right, Karoleks, and it is in 3 days.

February 1st marks 5 years since our little miracle blessed us with his presence in this world. An early Happy Birthday to Karolek. What a little man he is becoming too. Makes us so very proud.

Thank you all of you, our dear family and friends, for your continuing support and for reading if you got to the end of this really long message (my appologies). Keep warm and well,

Paulina

Merry Christmas!

Noticing it has been awhile since an update.. We are all doing pretty well (besides seasonal flu here and there), especially true for me compared to where I was this time last year - about to be re-admitted to hospital with an aggressive relapse.. At a loss for words, truly a miracle the way things have turned out since then, what greater gift than the gift of time - and TIME is ultimately what the 'smart' drug I'm on now has given our family in 2011. I personally know how thankful I am for researchers who never give up on an idea!

I had treatment number 12 last week in Rochester and this leaves 4 more treatments in the new year. Until then we wait and see. We dont know what will happen once we reach the end on this treatment which has until now been controlling the disease. Unfortunately 16 cycles of SGN-35 is the maximum on this clinical trial, but we are happy with how it has gone thus far, and our faith is strong. I will write more about possible next steps in later posts, we have been thinking about this, but I wanted to make this a short and sweet post - in the moment, things are good and we are happy for this :)

It is such a joy to see Christmas through our son's eyes, this year he's almost 5, and he has been counting down sleeps until Christmas. He cant wait to leave cookies and milk for Santa, and did most of the writing on a letter to Santa this year thanks to writing skills he's picking up in Junior Kindergarten :) As much as he likes his teacher and friends, he is excited for a 2 week break from school though that comes at Christmas time. We are too.

Merry Christmas!

During this joyous season,
may you be blessed with
the spirit of Christmas which is PEACE,
the miracle of Christmas which is HOPE,
and the heart of Christmas which is LOVE.

Wishing you and your families good health, and many happy moments in 2012,

Paulina, Konrad and Karolek