And so we go... one step at a time up the mountain

I have been home now for a few days - a week? My memory is still crap, so forgive the lack of clarity. Each day presents its challenges, though all things considered I am getting stronger and making progress. 

This journey isn't for the faint of heart, and I can imagine and see why some might give up instead of standing up, and there's no judgment there. The days are long, the nights sometimes longer, but each new morning is filled with possibility. 

And along the way is the love and support and encouragement from friends and family, who are praying for us and sending healing thoughts. 

How could we walk through this life without that strength? I don't know that I could. What about you?
 

Onward and upward

Oh, what a whirlwind this is! One moment I'm recovering, the next there's a tiny setback, so we persist through those. I won't let tiny inconveniences stop me, as exhausting as it is to always look up, look forward, keep pushing. 

I don't have much more to impart at this point. I'm just happy to be hope finishing my recovery, clean of viruses and funguses and anything else that could derail me. And I'm grateful for each of you who follow the journey and join with your prayers. It takes a village to raise a child... and a village to help a grown woman heal and thrive once again. 

I know it'll be a while before I can dance, so for now I stick with walks and exercises to strengthen and get me there eventually. 

It's hard to live under the illusion that you're mostly in control to realizing there's nothing you actually control except your attitude and how you respond to things.

So we keep fighting, one foot in front of the other, one bite after the next, working toward independence.

Onward and upward!

Where have I been these past months?

I have been "asleep" for the past few months, or more accurately, in a mental fog so thick, you can't see your nose. I am waking up in the hospital once again, learning I've been here before, and finding out there's all sorts of issues I have to face, mainly an HHV6 infection (human herpes virus 6). I have a pole with meds and fluids and who knows what else next to my bed. And I don't remember anything from round one. 

Honestly, I don't think I want to remember any of it. By all accounts, it was the fight of my life. Well, I find myself still fighting. I am a ghost of who I used to be, down to skin and bones. Hospital food isn't too bad, unless you're dealing with food aversion (why not add one more thing to the list?) I am told I wasn't so far off last time and managed to recover, so that's the goal now - get home to recover. 

I am coming out of the fog now, though I find myself in a mental loop where things repeat themselves over and over again, and I don't know which instance is reality. Yes, that's quite a bit of fun. According to me, I've spoken to my husband seven times this morning... except it's only been once. 

As I sort through all this and work on grounding myself, I also look at the time I've been here. Ten weeks so far and counting. Ten weeks I mostly don't remember. It really is difficult to keep a good attitude and hope alive when you're in the hospital this long. And yet, there's only one way forward - one step at a time, one foot in front of the other (ok, truth be told, I'm walking with my feet spread out these day to try to stay balanced. My grandma would be aghast! Ladies walk in one track).

My husband, my dad, and my girls have been troopers through all this. I rarely am without a family member in here to keep me company for a little while, in spite of the 1.5 hour drive, traffic, and all those wonderful surprises you can find in freeways in Southern California. 

I've been so touched by the many messages and support. They really do lift me up and help me keep fighting. If I don't reply to everything, please understand it isn't a lack of willingness, but a lack of bandwidth. 

As things progress, I hope to continue with updates through here. And I hope they progress enough that I can go home in the next ten days or so. The finish line is visible, please don't let it shift on me yet again.

Emotional Marathon

I am exhausted. I feel like I've been running on this emotional merry-go-round for half of the year, from diagnosis on February 8 through today. I live in limbo, waiting to move forward and get back to my life, and trying at all times to make the best of a shitty situation. 

There, I've said it. It's a shitty situation. 

My transplant schedule has been pushed several times now. First, it was to be on July 5th, but the donor fell through. Then July 15th pending donor confirmation. Then 22nd with donor confirmation. Then 26th because I'm so much stronger than I was (yay!) that I can handle radiation (that's a mixed boo and yay, because ultimately it's a good thing). Then it was August 2nd because, surprise!, I tested positive for COVID. I've been chasing a negative test and got one on Thursday, but City of Hope's swab goes as far as your brain (or so it feels) and detected lingering virus, so yes, you guessed it. Pushed again to August 9th pending a negative test.

So today I rant and complain and cry and feel angry and frustrated... and that's a lot of 'ands' without any commas in between. My English teacher would fail me. 

The days blend into each other, and I feel like I accomplish nothing. It's a study in patience, a virtue I don't have and one for which I try not to pray - the Lord has ways to send you reasons to become patient instead of just injecting some of the stuff into you. 

It's a study in trust, as I try really, really hard to let go of the things I can't control and trust that God has a reason for allowing this to happen, and his reasons always will be better than mine. I'm on a schedule, and He reminds me I can't control life. I hold tightly onto the wheel instead of letting Him drive, knowing fully well that I don't have the roadmap and without it I wouldn't know where to go. 

He's cleared the way for me, surrounded me with people who are integral in this journey, placed me with an amazing medical team, and I think He's asking me to let go, to rest, to go to Him, as I'm weary and burdened and need rest. He's asking me to take His yoke. Some days, like today, it's harder. 

It is hard to reach deep into oneself to find the strength to prepare for the next step. I don't want to go back to the hospital. I am traumatized from my first visit, which as we all remember was less than ideal and brought with it serious complications. That said, I cannot sit here forever in eternal pause. So, I dig deep in preparation, and while I know I'm not ready, I mentally get myself there. And it gets yanked right from under my feet. And here I find myself, asking why I have to wait. 

Until I got COVID, I had not asked "why me?" Self-pity is not conducive to anything good. Today I didn't ask that, but I asked why. I felt deflated, defeated, and at times like a total ass because at the very least I woke up today and I have a fighting chance. 

Summer was the better schedule, before school starts, while Larissa is home. I wanted to be discharged before she goes back to college. Instead I get another week with her here before she leaves. That's the silver lining. 

And maybe I can learn to finally let go of the wheel and take a rest, trust the process, and hold on to His hand while he leads me up this very steep mountain, where the terrain is uneven and difficult, where the fog is so thick I can't see beyond my nose. He sees. That should be enough. 

My word this year has been hope. It's chased me from the moment I was diagnosed. It's fueled me and given me wings. It's seen me through the worst of it. 

Now I have to let go of the anger, frustration, disappointment, and focus on hope. And on all the things I have for which I am grateful. Even in days like this. 

Surprise!!! The good, the bad and the ugly.

As I get closer to my transplant date on July 22nd, I find myself trapped in an emotional loop and working on letting go of the things I can't control. It's like a constant game of "what now??"

The Good: So, what now? I had my clearance appointment with my bone marrow transplant (BMT) doctor, who again is one of the best under whose care I could be. 

He was pleasantly surprised at how much progress I've made since he last saw me (a few days after discharge in late March) and how much stronger I've gotten. I look good! I have good energy! I'm no longer looking frail and weak! I'm still young, under 55!

Yes, I have made considerable progress, gotten stronger, put on the weight I'd lost, gotten my hair back, keeping a positive attitude as much as I can, and leaning on my faith every step of the way. 

The Bad: Well, maybe it's not really bad, but getting stronger comes with the news that I can now handle total body irradiation (TBI), which I was sooooo happy to skip when I saw it wasn't on the schedule.

What this means: a mixed bag. It does reduce the chance of relapse after BMT, improves engraftment, and it does attack any potential cells that might have started to grow in my central nervous system (CNS), though that was negative when I had my lumbar puncture and a dose of chemo was administered. It does increase the chance for other cancers and cognitive issues down the road, though I'm told that is minimal. The risk/benefit analysis comes out higher on the benefit side.

How much higher, you ask? Well, what a great question. And here's where things get tricky - there is NO data. None. Zero. Zip. Especially considering that whatever limited data there might be is all lumped together and not segmented - age groups, physical status, comorbidities, cytogenetics (mine are not good), and so forth. 

My daughter asked me, if there is no data, how do they know there's an actual benefit? Smart girl. I'll be asking the radiation oncologist that. 

The Ugly: Radiation will suck. I will be admitted two days earlier than anticipated. I might lose my hair again (ok, that's just an inconvenience and not a serious concern). Side effects are the pits, and I've pretty much coasted so far (let's not bring up c diff, that was a totally different ball of wax). I will be in the hospital at least one more week longer than anticipated after BMT. Relapse is still possible. 

The Balance: I had my pity party yesterday. Many tears flowed, several tissues were used, and there were moments in which I felt almost nauseous. Could I live with not going through radiation and not having tried everything I could to fight this? Can I put aside the constant question of whether the leukemia will come back, waiting for the other shoe to drop? Can I buckle up and go through radiation? 

No, maybe, yes. 

I am physically stronger than I was and emotionally stronger than I think. I have responded well to therapy. I was in the clinical trial with a drug that is very promising. Aside from the cancer, I am in great health. We found not one but three 100% matches. The odds are indeed stacked in my favor.

The Internal Battle: A dear friend of mine recently reminded me: "You know, Jesus is in the boat with you". To which I replied: "Yes, but HE'S SLEEPING!!!" We laughed, she said, "but he's in the boat." 

Well, here I am, with a death-grip on the rail, afraid of things I can't control. I am working hard to let go of said
rail and instead go and rest next to Jesus, who after all is at the wheel. My prayer these days is still for complete healing, but also to be able to remember all the consolation He's already sent my way, so I can fight those moments of fear and doubt and cling to hope, work on trust. And yes, I do know that trusting in God's plan is the hardest of all, because it means acknowledging that His plan and mine might differ, but that His plan is always better. 

My spiritual director told me maybe this weight I'm feeling is not so much the weight of the world but the weight of love, of all the prayers being offered for me, of God's love for me, and maybe I just need to stop and let that love in, accept it, all of it. 

So, help me Lord to let go of the rail and rest in you.