2009-08-07

Our chemo shelf

Tonight was the last night of steroids for this month. We have only 5 more days of steroids left starting 31 August (wow, can you believe it?). All in all it wasn't a bad week. Bianca was a bit more emotional and definitely more hungry, but the week was manageable, she coped with school and was mostly happy enough. But even so, steroid time is always a stressful time as you prepare yourself for the worst and hope for the best (thankfully the "best" won this week - well mostly, tonight she had a bit of an emotional moment again so not entirely without side-effects... oh well).

It feels so incredibly unreal that in just a bit more than a month we will be done with chemo. It is hard to imagine that in one month from now our chemo / medicine shelf will be mostly empty. Yes, we have a chemo / medicine shelf. It is a dedicated shelf right at the top of our pantry (and yes, we have a baby lock that we use to lock the pantry doors with). It will be weird not to have a supply of rubber gloves and not to have bottles of chemo medicines and pill cutters in a sealed container and stock of Acyclovir and steroids and Omeprazole and plastic cups sitting there waiting for us. It was a big part of our lives. We lived our lives and created our routines to fit in with Bianca's medicine schedule. It is so hard to imagine starting to live differently.

I remember that first day we were discharged (8 June 2007) and we left armed with our first set of medicines, I remember how weird it felt then. I remember the sun shining as we drove home, so aware of how suddenly our lives changed. I remember looking out the window expecting the world to have come to an end and a standstill, but yet, people were walking and talking and smiling and having lunch at some of the cafes, life still carried on for them, it was only for us that it came to a standstill. We knew so little then. Leaving that day, I vaguely remembered Doctor Anne saying something about neutrophils and "no swimming" and temper tantrums, but this whole new world was so incredibly unknown and foreign to me then. We had a file with some information on what to expect and what to look out for and when to call the hospital, but it definitely felt like we entered a whole new world where we had no clue on what to expect or where to go. So when I looked at our chemo / medicine shelf earlier in the week, it reminded me of that day even though it feels like a lifetime has passed since that day.

I must say that this past week was a week where I reflected on many things.

One of the hardest things we had to learn during this journey was that not all the family and overseas friends we thought would be interested were all that interested. Certainly, despite asking way back at the start of our journey that they please keep in touch with their normal news and updates, very few actually did (I do have to make a special mention about my mom who writes to us on a weekly basis and that means the absolute world to us). But that's okay, that's life, from our side we made the effort to share as much as possible, to share photos and general- as well as medical news. When I look back I am so impressed with how well we coped with our journey. We managed to find solutions for specific situations and we stayed strong as a family unit. As a family unit we have come so far and have achieved so much. We proved to ourselves that we were able to do this, to handle this incredibly big thing with a positive attitude. And that is something that I hope Bianca and Caitlyn will take with them going forward, that you can do anything and that nothing is impossible, that we can't choose what happens in life, but we can choose how we handle it.

Another aspect that I reflected on is where to from here? What goals do we need to set for ourselves, what would be realistic, how do we pick up the pieces and enter the new chapter? Where does that leave me? Just before Bianca was diagnosed I was quite career-driven. I spent a few months prior to that doing intensive research into career-growth opportunities, I felt ready and even found what I thought was the perfect job that would open doors for me. But now? I have this massive big gap on my CV, Bianca will still have regular hospital visits at least for the first year or two, for the first 6 months (at least) she might very well still get quite sick and land up in hospital and she is still very much an oncology child. Things are still not simple and straight-forward. The change, this time, won't be as drastic and sudden as when Bianca was diagnosed, it will be gradual, but still, we won't be the same people we were before Bianca became sick, we had to change, and along with that our goals had to change. So I guess it is figuring out what life will be like beyond chemo.

And of course I am starting to reflect on when it would be appropriate to end this particular blog. It feels as if in many respects it served its purpose. I think I will still be interested in blogging, but perhaps a different blog with a different focus.

But anyway, I always knew that it would be like this when we came to this point. For so long we had to force ourselves not to think beyond "today", because the end date felt so incredibly far away and if we allowed ourselves to focus on that too much it would become too big and too difficult and so we forced ourselves just to focus on "now" and get through "today" and I knew that I would start looking back and be amazed at how far we've come. But of course now we have to start thinking beyond "today", we have to pick up the pieces and figure out what the next chapter will be like. And as exciting as it is to get to this point, you do realise how exhausting this journey has been and it also feels a bit scary having to enter a new "unknown". But mostly it feels exciting, very exciting. We simply can't help wondering what possibilities wait for us around the next corner.

Enough rambling...

On a different note - tonight as Terence and Bianca were watching some or the other show on TV, I suddenly noticed that Bianca in her school uniform looks the same as Terence in his work clothes. I thought it was so cool.

7 comments:

sharonvw said...

Hey Lea
Sounds like you have a lot of decisions to make. My suggestion... my little bit of assvice is this... sometimes the answers to the toughest questons come when we simply let them be, when we're quiet with them and not wringing our hands trying to come up with the perfect answer.
As for your blog, its called The Whites In New Zealand, I don't know if it necessarly has to stop (unless you want it to) it could simply morph and change as you all morph and change along your journey's.
I'm super excited for you all!!!

ABandCsMom said...

Great post! We've been there with the chemo stuff. Carly (our daughter) went through chemo for 26 months being treated for ALL. We had the very same thing happen with so called friends. They simply didn't want to know anything that was going on. They stopped calling just to chat. They stopped calling at all! We made it though, without their support.

Life is interesting after chemo. It's a new beginning in a way. It's still kind of scary, but much easier than the chemo life. It's a new normal. I guess is the best way to put it.

Congrats on the end of chemo coming up soon!!!

Lisle said...

Lea, I have so loved following your Blog, please keep it going, I check it every night to see if there is an update! Bianca, you Rock! Hou Bene Hou

Anonymous said...

Hi Lea,
I love the photo of "the twins".
I am so glad that steroids went reasonably well this time. I love those pulses.
I always remember starting Maintenance and wondering how we were going to get all the chemos right. There were so many different medicines to get into Peter. And I am still scared that we will miss the odd dose.
Anyway, that is so exciting that you are on the last countdown. I can't wait to get to that stage.
Have a great week,
Bridget

myrelish said...

I am in sheer awe of you and your gorgeous family and how you have all worked together to survive. I hope that you will continue to blog, if not here somewhere we can still follow. I have enjoyed getting to know you all through the posts, and not just the post of chemo and treatment but the normal and everyday fun that you find everywhere you go.

Anonymous said...

How amazing that you are nearing the end of treatment for Bianca!
I must add tht I hope you do not end your blog. I read it every day
watching and waiting for your news of the day. Hoping and praying with you that Bianca is well and getting through week to week, day to day. Our family can't wait for our Matthew to be at the place you and Bianca are now. We still have a way to go but we are getting there. I look forward to reading and again waiting for news of Bianca as she gets to this last milestone.
Rosemary NY

Suzanne said...

Amazing photo, amazing news and amazing girl.