Monday, 7 January 2013

Happy New Year, New Normal

Happy New Year!

I look at the rollercoaster  that 2012 was and realized that it both feels like a week and like five years went by. I remember a lot of what we went through last year, but some of the memories begin to fade - particularly those around the MOAS itself.  I'm glad that I kept up the blog ( and while in hospital Chris and my sisters did) so that I can properly write down everything we experienced last year, as I've been working  on putting it all down on paper.

The more stories we have out there, the better. I know there are another couple of PMPers and their caregivers that have written or are writing books about their experiences, and I think they go a long way in taking away some of the fear when diagnosed. This scary journey is so very individual in many ways, but in others we can still leave markers for others to follow, possibilities of what to expect. Besides, its always about the journey, rather than the destination!

The New Normal

Health wise, I feel great all things considered. I am building strength and stamina, and slowly returning to my routines.   What I have found really limiting is the post-chemo arthritis, which hasn't improved; Dr. J let me know at our appointment that it can last several months, so its just a matter of finding the right balance of painkillers, I suppose. I have found it really limiting: I can't open juice cartons, do anything really detailed art wise, do much with my hands in general. Lying in bed or sitting on the couch makes it very, very hard to stand up after and things literally creak. Sleep has been elusive due to the pain, and I suspect my body has gotten used to the extra strength advil (I can't take Tylenol due to allergies); I don't want to take something much stronger though, as I still have to get Aiden back and forth from school.  So, for now, trying a topical cream and playing it by ear. If its still this bad in a month I'll have to get something stronger.

The physical aspects aside though, I have finally come to the decision to seek out counseling - not just for us but for Chris and possibly our little guy.  There are simply too many emotions that we can't handle on our own, going forward. Up to now we were all in battle mode, wanting to take this thing on and come out the other side, and we did! Now we're left with just ourselves again, needing to re-define who we are from this point on and how Cancer changed us.  Last week Aiden got bit by a friend's hamster, and he burst into tears when I mentioned a tetanus shot might be in order; he was convinced he was going to die from it. He isn't, incidentally, as all his vaccinations are up to date - but that wasn't the point. He has been so stressed and we are ill-equipped to really help as much as I feel he needs right now.

I was remembering  Valentine's Day,  a year ago.  I went to pick him up at the school and he burst into tears, his face already streaked with them. I  hugged him and tried to figure out what was wrong, only to have his teacher tell me that he'd had ' a bit of a meltdown' in class when he got no Valentine's cards after he had given out a ton to his friends.  Now, don't get me started on Vday. I hate the pressures we put on one another, and I've always thought it was a horrible idea to introduce it to kids that young. Be that as it may, it had been introduced, and I had a miserable little guy in my arms.  I was fairly angry at the way his teacher phrased it, so I got up and mentioned that we were dealing with a lot of stresses at home so I was fairly sure it had to do with more than Valentine's, thank you. I took him on a long walk instead of going straight to the car; at this point we hadn't told Aiden ANYTHING of our fears and worries, because we had nothing concrete to tell him, but it was fairly evident to me he had been picking out on the stress and anxiety at home and was internalizing it. Goodness knew what sort of things he was imagining - plus at this point I LOOKED six months pregnant, so it was fairly obvious something was going on.

So we talked. And talked. I asked him about my suspicions and he confirmed them; he was worried that something was really wrong because Chris and I were always stressed, unhappy, anxious. I  let him know the basic reason why we were; something was up with mom's belly, and we weren't sure whether it was a Dubi ( something of dubious nature) or a Connor ( what we had wanted to name a brother for Aiden).  So, naturally not knowing was worrysome... but not to stress too much, as I'd just had a visit with the Doctor and would have several tests in the next little while.

He hoped for a Connor, but I let him know that if it was a Dubi chances were it meant something was up with my reproductive system, which would mean no Connors ever. That, to us at the time, was the extent of what we wanted to consider a worst case scenario. He was relieved to know what had been weighing on his dad and me, but I remember getting into the car with him after our talk and having this sensation that I might have just lied to my child. I don't know what it was, but I was pretty sure it wasn't a child in my belly but something much more ominous. I hadn't talked to Chris about that possibility either though... that I might be seriously sick. I didn't want to think about  it.

Life has changed. Now that I am getting a reprieve I am taking life by the horns again, but there are things that will forever be different. I now understand why for some friends of ours some holidays are just not the same. To me, now all I can see is that day Aiden was in tears, that dread that something was very, very wrong within me.  We celebrate love everyday; last year was a celebration of love in the support we gave each other, the love and hope we received from our friends and community.  The day itself - maybe we'll see if  we can  visit my sister and avoid it all together.

Connor was born, by the way.  To our delight Chris' brother and his lovely wife  announced they were expecting not long after our own dreadful news. To our surprise ( since I don't think we ever mentioned our terminology to anyone) they chose to name their baby Connor, and he was born at the end of October, not long after I finished chemotherapy. It might not have been a brother, but a cousin is pretty close!

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