October 16, 2017 (Sara)
Over the last month, there have been some really great times followed by some really not-so-great times. And visa versa. Not just with this little family but pretty much the whole world, I suppose. I know that we live on this incredible sphere and we shouldn’t be surprised with cycles but man sometimes taking the good with the bad can be difficult. There are plenty of events that have proven life is tragic that I could write about this evening but I don’t think I have the expertise to do so. What I can write about though…is me.
I find it fascinating when I enter a deep and meaningful conversation with a friend, who is going through some intense struggle, with some sort of wisdom and insight…then end up coming out the other end of the conversation bawling because I needed to hear my exact words. Communication can be so serendipitous and altering that way. I found myself saying things like “when you feel anxious, try to change you mind” and “you have to forgive yourself for feeling this way…”. Those are just examples of the words that really helped me. But turns out, I had a whole conversation of really good advice. Who knew? But how can I not support myself the same way I do a friend? I used to be so in touch with my own body, mind, and spirit but have felt so disconnected for so many months now. I know this is typical. I know that when a family goes through trauma like ours has, that this sort of disconnect and anxiety can be expected. But I still don’t know why it takes me tears with a friend to listen to myself.
I truly have the best support system and while my days have been a bit more heavy than light, I feel supported constantly. I feel supported by my friends, parents, husband, family, nurses, and even the doctors in our lives. Oh, and Pelei, our dog. She is my buddy, and gives me kisses more so now than ever in the past. I make that statement about support because I never want anyone to think I feel alone. I don’t. In my darkest hours, it is YOU that gets me through them. When I feel anxious or fearful, I think of all the people praying that I don’t feel anxious and fearful. You truly are the best people on this Earth. I’m fine. I really am. I told Megs and Gen that I’m waiting for this level of anxiety to feel normal. At this point it still feels uncomfortable but I don’t see it diminishing anytime soon…I guess I’ll still wait.
As for Maya. She just came off of a 9 day bout of constipation. She had her quarterly spinal tap with intrathecal Methotrexate one week ago and since then has been a bit of a challenge. She went into the procedure with grace and woke up a….well a dragon. Poor Nurse Lauren got a front row seat to Maya’s Fury and at that moment completely understood why we call her Maya The dragon. When Maya is constipated, her behavior is extremely challenging. I don’t blame her. When I haven’t pooped for even just a day, I can be pretty grumpy. Her legs hurt quite a bit more than usual this month and I’m not sure if that is the extra activity that she has been doing at school or the chemo. I DO know that the chemo does not help Maya poop and that is a challenge I cannot wait to eradicate from our lives. The poor girl had more bowel care (laxatives and stimulants) than ever and she still just couldn’t….let it go. She would have (let it go) if there wasn’t the complete understanding and trauma of what her little butt hole would feel like during and after. Even as an adult it is hard to talk yourself into crapping out a rock and I just feel awful that I have to coach my 4 year old into doing exactly that. But she did it as I helped her. And she’s okay now. We are all okay now.
Maya’s ANC is 2100. Of course this is too high, but she hasn’t been one to chill in the sweet spot. We will increase her oral methotrexate this week in hopes it will deplete some of her immunity without crashing her bone marrow. We’ll check labs again in one week. It isn’t ideal but at least she will get to return to school this week (after clearing all that bowel care she gave her). And even through the fits of dragon screams, tears, mean words, and sleepless nights…she sometimes seems very happy. At least I think. I’m always so impressed how she bounces back from weeks like these and turns into the happy-go-lucky kid I remember.
For Scott and I, the stress ebbs and flows. I admit if feels like it flows more than ebbs but we have each other and we take wins when we can. And we do find time to enjoy. I had a wonderful birthday weekend (at the end of September) with an outdoor movie night with the kids and an AMAZING Janet Jackson concert with my two best girls, Megan and Genessa. The next weekend, Scott and I flew to LA to root for our DODGERS in the playoffs. We flew into Burbank and 24 hours later flew home. It was short and so sweet to take home a WIN of our boys in blue. I have always been a fan of “life’s simple pleasures” but perhaps never as intensely as recently.
We might have several more months of treatment but one day we will get to the 7th inning stretch. The break in the game when we’ll get to stand up, sing out, and root root root for the home team (us!). And we will then move on to the next inning. And then we will win. It is right around the corner…I can just feel it. I have to trust it is there.
Take care, stay safe, eat your veggies, and smile.
Love is Life.
Keepin’ it real Sara! I think that is what I adore most about you. No sugar coating, but the plain facts. It help us all relive your moments with Maya. I can’t imagine a little girl with 9 days of poop! Poor little thing. You guys are gonna win this one! I have absolutely no doubt.
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