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).
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
