Day +70. Encouraging news from yesterday — my counts have increased (ever so slightly)! I was super excited and very overwhelmingly happy when I found out. The implications of this are two fold, assuming the counts weren’t a fluke since they can vary so much: 1) my immune system has stabilized and is no longer dwindling its way out the door; 2) my own immune system has started to flourish on its own, despite the chemo, and will eventually repopulate itself. Very, very exciting. And so relieving. I’m not going to lie, I was getting very discouraged and frustrated at the fact that none of the treatment had worked in helping me get better. But this, this is a sliver of hope, which at this point I accept with open, grateful arms. 😀

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This week I’ve watched eight movies. Eight — I decided to keep track this time. They include: Selma; The Invention of Lying; While We’re Young; Insurgent; The Prize Winner of Defiance, Ohio; The Mirror; The Longest Week; and The Lego Movie. I never realized how much media I consumed until I started keeping track of what I was doing. Damn! So many TV shows, movies, aimless internet perusing. Granted my brain still isn’t at fully functioning capacity quite yet, but this addiction to constant stimulation via the interwebs is, quite frankly, unstimulating.

In an effort to revisit past hobbies and make better use of my time, I’ve been trying to force myself to do more whether it’s “productive” or not. Logic puzzles, coloring books, crosswords, sudoku, baking, all fun stuff! But to be honest, all of those things only hold my interest for so long.

I’ve spoken with my care team and it seems that I might be able to go back to work soon if my counts stabilize and/or increase over the next few weeks! This forced vacation, as luxurious as it has been ::sarcasm::, will finally come to a close for now and I’ll be able to go back to having something to do! I’m actually really excited at the prospect of going back to work, to establish a sense of normalcy and purpose again. Not to say that there hasn’t been a purpose in my recovery period, but I’d like to be able to focus my attention on something other than figuring out what to do for the day.

Here’s to a vibrantly robust, youthful body which is stubborn and doesn’t take help from a gracious donor! 🙂

Day +62. My counts are continuing to trend downward with my neutrophils dipping into the danger zone. I got a shot of Neupogen to help boost those numbers today.

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You know the old saying when it rains, it pours? Whelp, I think my garden’s been drowned out with all of this excess water. I get it, Life, I really do. I’ve gained an even greater appreciation for living, loving, and forgiveness. I’ve come to terms with the worst case scenario through all of this — death — and I’m okay with it. I’m draining my insurance company for almost every last penny they’re worth with all of this treatment. I. Get. It. Can we now buck up and get it together? Can we move out of the storm and into shelter? The moon is cute and romantic and all, but when is the sun going to come back out? (According to Annie, it’s tomorrow but I’m not sure if I believe her anymore).

This week has been one of emotional upheavals and intense processing and acceptance. Aside from dealing with the frustration, irritation, and annoyance from my graft rejection, I, again, have been disappointed by my family, specifically my parents, in a time of great need. Sparing you the complex details, though they wish me good health, they have expressed that they will not support me in the only way they can right now, unconditionally. The situation is saddening and discouraging, but given my current state it is better to surround myself with friends who will support and encourage me than to expose myself to negativity.

I am constantly overwhelmed with immense gratitude and humility for all of the wonderful, beautiful, loving human beings in my life, near and far. I seriously wouldn’t have the strength to get this far on this journey, dealing with all the crap I’m handling without each and every single one of you. ❤

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Graham sent me a link to these beautifully designed and poignantly written cards for people to give to loved ones experiencing a health crisis when they don’t know what to say. Emily McDowell just launched a new line of Empathy Cards. See them below. I’m seriously loving them.

She’s a cancer survivor herself and has released a line of 8 cards. She plans on releasing more cards in the future. I want to contact her and submit card ideas.

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Lastly, I’ve been indulging myself in a lot of pastry lately (obv). My most recent addiction: Mr. Holmes Bakehouse. They’re famous for their cruffin (croissant + muffin), which is seriously, seriously out of this world! They have a different unique filling each day with two specialty donut flavors as well. The picture below is their “Madhatter’s Tea Party Cruffin” (chocolate earl grey tea custard topped with meringue and chocolate pop rocks), with vanilla cream and chocolate peanut butter cream donuts in the background. This picture gave me a little Instagram fame, nbd. I’m seriously addicted. Plus, it’s a short walk from Ricky’s! 🙂

The two most dreadful words I could possibly hear right now: graft rejection. That seems to be what’s happening according to my counts and chimerism percentages. My last post was written when I stopped all of my immunosuppressant medications with the hopes that the donor cells would be allowed to grow and begin flourishing, keeping an eye out for GVHD. That was about 10 days ago. Since then, my counts have continued in their descent. Thankfully, not to a dangerous range, but still trending downwards. Frustrating.

I saw my doctor today and he leveled with me. It appears that the graft is not holding in my marrow. My immune system, despite having blasting it with a pretty strong immunosuppressive chemo regiment pre-transplant, is attacking the donor cells as well. Basically, my body ain’t got no time for no one.

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So, what’s the course of action? My doctor said that we’re going to hurry up and do nothing. So, more waiting. The plan is as follows:

Min’s sAA Post-Transplant Treatment Plan, v3.0

1. Track my blood counts and donor chimerism percentage for a few weeks and see if they stabilize; ‘they’ being my counts. If this happens, then no other major course of action needs to be taken except monitoring my counts, until I die, and treating as necessary (e.g. blood transfusion, platelet transfusion, neupogen, etc.)

2. If my counts never stabilize and continue to drop, we’ll check to see if my body has developed antibodies against my donor’s blood.

2A. If I don’t have antibodies against my donor, we’ll try a stem cell transplant and see if that helps.

2B. If I do have antibodies against my donor or the stem cell transplant doesn’t help, we’ll have to find a new donor and re-attempt the marrow transplant. The chances of having a successful graft on the second try is low, but it’s better than doing nothing. Additionally with the second transplant, I will have to undergo full body irradiation in addition to the chemo regiment pre-transplant to ensure that everything single effing cell is obliterated and we start from scratch.

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Needless to say, I’m upset about all of this. Particularly, I’m pissed. Mainly because I expected, wished, hoped that the transplant and this recovery period would be the extent of my treatment; all would go well; and I’d be back to my “normal” life come the fall. Now, it doesn’t seem like that’s even a possibility anymore. I’m so irritated with my body and how stubborn it’s being, rejecting both my old and new immune systems. I’m frustrated about the prospect of this physically, emotionally, spiritually, and fiscally draining process dragging on for many, many, many more months. I’m tired of having nothing but concerning and discouraging news to tell my friends and family who all just want me to get better. When will this end?

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*sigh*

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Despite all of the not-so-great news and boat loads of emotions, my friends have really stepped up and have been nothing but supportive. From brunches to coffee dates; homemade pasta dinners, full casseroles, and simply vegging and watching movies; house sitting, rides to my appointments, and feeding my addiction to froyo, they’ve been there. I’m so, so humbled by everyone’s willingness to listen, to comfort, to just be there during a time of great need. Giving without expecting anything in return, being a firm hand of support when I stumble. I’ve been blessed with more than I know what to do with and the only thing I can offer is humble, tear-filled thank you. I love you guys.

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A few pretty pictures I’ve managed to snap over the past week. I should do better about snagging more.

The view from Graham’s dining room window. Stunning at sunset.

Helen Putnam Regional Park for a midday picnic.

Coffee and donuts with Kayla at Crissy Field Beach. The Golden Gate never gets old. srsly.