The Princess and the Pea

Hello my lovely cherished cheering squad! 

I have now been released from the hospital’s custody after around six weeks of beeping IV machines. I’d pair that with another salient feature to explicate, but when I recall what it felt like to be there, nothing else floats to the top to match that pervasive sound. So, farewell beeping IV machines, until we meet again! 

I have been home now for almost a week. Apparently my little brain was confused as to how things actually work; I was expecting my homecoming to be some kind of panacea. I had grand plans for cooking meals, baking a peanut butter chocolate cheesecake for Oliver’s upcoming birthday, going for regular walks around my neighbourhood, etc. It turns out that being hospitalized wasn’t the only reason for my inability to achieve such feats. It turns out that my body, at random intervals, is still aching deep in the bones and flat-out limp with fatigue. To give you an idea of the extent to which this kind of fatigue collapses your capacity to do anything at all, I was usually too tired to even watch TV or movies while I was in the hospital. Thankfully I have an active imagination that spares me from boredom.  

Towards the end of my stay, I did manage to binge-watch half a season of Drag Race because my wigs made me want to try a drag-inspired makeup look. This is yet to happen but I promise pictures when I get around to it! I also needed a distraction from the bone pain that made me feel at sea, topsy-turvy and just barely able to weather the storm. The pain med pump helped, but it was solely intended to keep me eating by keeping the mouth pain at bay. I should have abused it a little to ease the leg pain, but it’s probably best that I missed that opportunity. 

The day I got to go home, I had another bone marrow aspiration and biopsy. The aspiration was unsuccessful, as I understand (there was no fluid to collect, unfortunately), but the biopsy results will help determine my path forward through these woods. My hope is that the wolf isn’t hungry anymore! If there are still a concerning number of blast cells, we may need to try another type of treatment to get me into remission before a transplant can happen. Now that the side effects from the first round of chemo are beginning to dissipate, I’m already chomping at the bit to get on with my treatment. I was hoping to get results before today, but will just have to wait and see. 

My first few nights at home, I thrashed around, the very image of the princess with the smallest of peas concealed deep below her. I couldn’t sleep and couldn’t get comfortable and not even 10mg of melatonin sent me to dreamland. Very much like the itty bitty pea below the princess’s luxurious mattresses and duvets, the problem itself is practically invisible. I can feel that something is amiss at the core of my being, in my blood and bones, but I can’t help but wonder if some of it is just in my head. Sure, I have bruises like scattered rose petals, a PICC line with two tentacle-like lumens sprouting from my arm (not to mention my bald head that makes me look like my dad!), but so much of the worst of this AML can’t even be seen without a microscope. I’m reading a memoir that Aunt Val sent me, Between Two Kingdoms, by AML survivor Suleika Jaouad. I’ve pored over her experience so far, clinging to every similar chord that’s struck with my own tale. Through the pages, Suleika reassures me that the bone marrow tests are indeed “torturous” and that the invisible beast gnawing at this marrow is not just a fairy tale, but real and worthy of my wariness. 

I can tell today is the best day I’ve had since coming home. I’m bubbly and alert, two things I have very much missed in myself for a while! I will have to be careful to not overexert my body, so that I don’t pay for it tomorrow. I had my coffee and my oatmeal with blueberries, as well as a little adventure outside to hunt for crocuses (we found some purple ones!). I am now ready to face the day and whatever is to come. 

P.S.: A very special thank you to the outrageously generous folks who have given their love; blood; resources; books and other entertainment; chocolate and other goodies… oh who am I kidding, I can’t summarize the tremendous support you all have given so freely. I am forever indebted and grateful (just a little behind on my personal thank you messages).