TheDaysAreBlendingTogether 

Day 11 and counting... Finally had a doctor tell me what to expect regarding when I can go home. She let me know this first phase is a three to four week hospitalization phase... three to four WEEKS... that's a lot of days. I may or may not be half way through. I may or may not have cried when I heard that. 

I'll get back to that, but first some good news. We got the cytogenetics back, and the cells are negative for the worrisome mutations. I'll take that! Next generation sequencing takes a while longer. I know it still depends on how I react to treatment and, as we travel down this road, that will determine which direction we take at each fork on the road. I'd like to request a straight, boring, route please. 

I now have a PICC line on my left arm, and the peripheral IVs have been removed. I am regaining range of motion (one of the IVs irritated the inside of my elbow, which was very painful). I can now get my hair in a ponytail! And with a PICC I can take showers! It's the little things, people...

I am grateful that I've tolerated this first round of chemo fairly well. There are a couple of small sores in my mouth that make eating even more difficult, there's loss of appetite and changing taste (combined with hospital food). Not chemo-related but AML related, my gums haven't completely receded, so biting and chewing can be problematic.

This week is all about waiting for values to drop, come back up, and assisting me to keep my counts above acceptable levels (I guess I have to remain functional). Monday I get another bone marrow biopsy - it's the weirdest thing to feel them drill through your hip bone... Then we wait for results to see if the chemo did what it was supposed to, and I can move into the consolidation phase. Once my blood levels are at acceptable levels without support (no transfusions), I can go home. No idea for how long at this point.

So, back to the long-term residency I now am coming to terms with... I remain the fun patient. I'm getting to know all the nurses and the staff. I'm hearing their stories. And I'm doling out life advice - I feel like Charlie Brown's Lucy, "the doctor is in"! I might just become the "Dear Abby" of the fourth floor. And I may be trying to convert the chaplain to the Catholic faith. To his credit, he continues to come back and hasn't run away. 

My room is covered with posters and pictures of my family, which reminds me every day why I fight. I have a Wonder Woman banner that reminds me that I've got this. I now am the proud owner of a Wonder Woman robe, WW socks, and golden cuffs! I wore the robe to walk around yesterday, showing it off. I have books, coloring books, a bowl full of Jolly Ranchers and Ghirardelli chocolate (I have to share all that...), and so on and so forth. All reminders of the friends who are rooting for me. 

I have more up moments than down and continue to work on keeping a positive attitude. I don't know if I've absorbed all of this or not, and I know it's early yet and it will get worse before it gets better, but I'm taking the bull by the horns and letting this bitch know it ain't taking me down. 

And while thedaysareblendingtogether, I feel surrounded by love, support, encouragement and prayers from you all. Everywhere I look the same word keeps coming up: Hope. If God is telling me to have it, I'm listening and following his clues. He's shown up every single day, never letting go. I am so grateful for that. 

My husband is my rock. My children are holding up and handling this as well as could be hoped for. And my parents, well, they worry, but they are keeping the faith. 

So, I hope every day. I try to surrender every day (that's really hard for me), I refuse to worry about the things I have no answers for and try not to fear the things over which I have no control.

I remain so grateful for you all. You spur me on, push me forward, and prop me up when standing becomes difficult.

Thank you for lighting my path with your presence. It's humbling and overwhelming and so, so appreciated. 

 Learning Curve - Keeping it Real 

Oh, the things you learn along the way. The things you didn't think to expect, or the things you hoped you wouldn't have to deal with. 

It's not that I shouldn't have been prepared for it. After all, I have a whole bunch of information on chemo, what it is, side effects, etc. It's just that I focused on the obvious ones - nausea, loss of hair, mucositis, weakness... you know, what you think of when you think of chemo. 

Then there's the let's-not-really-get-into-all-the-info attitude to avoid a case of hypochondria, to which I am not prone, but still. And then there's all the other stuff that isn't even listed, because it's not a side effect but more of a consequence of spending time in a hospital. 

Raise your hand if you know that I love food. Ok. I LOOOOOOOOVE food is more accurate. Well, finding out that chemo messes with your taste buds is adding insult to injury. There's loss of appetite, but no surprise there because everything tastes bitter and metallic. It sucks. 

I also need to wash my hair. At this point of my stay, you can probably figure out how many days have passed by the look of it. A short cut is in order, because this is not sustainable. 

I had an issue with my PICC line - a clot, so they removed it and hooked me up to two IV ports on my left arm instead. The right hurts, the left can't move that much. Friends, when you have limited use of your arms many things come into play: you start hoping you are ambidextrous, you try to figure out how to brush your teeth and eat with the wrong hand, you wish for a fairy godmother to come and tie your hair for you, and you pray to all the angels and saints that you can at least wipe your own butt. 

I am told I may get unplugged today at some point, and I have already warned everyone who will listen that I am making a run for the shower, washing my hair, and recovering some semblance of self before they try to hook me up to anything else.

Other than that, I'm peachy! 

Indignities aside, I remain grateful for every blessing that surrounds me. And the occasional Brahm's Lullaby that plays every time a baby is born is a moment for rejoicing in the miracle of life. 

As I told a dear friend of mine earlier today, I have all of you, so I can have this. 

Paying Attention to the Landscape

So, I'm now driving down this road with no real control on the direction or the wheel, just a clear understanding of the destination and every ounce of my being focused on that. By the way, tangent, as most of you know, I'm fairly self-sufficient and a problem solver... except when I get lost. Then I panic, hysteria can easily take over, my brain shuts down, I start to shake and sweat. It's not a comfortable place to be at all. 

Back to my point (I hope there is one). I'm on this road, no map, no GPS, learning to be uncomfortable, refusing to panic, and working on trusting completely in God's love and direction, because after all, the will of God will not take you to where the will of God will not protect you.

The road is unknown, and I've already experienced both a smooth patch of pavement and a couple of minor bumps. 

The smooth patch: cytogenetics are coming back little by little and my leukemia is negative for a mutation that would have made this fight harder. Yay!! Good news!!

The bumps on the road: I developed DVT (deep vein thrombosis) along the PICC line, so they had to take that out. My right arm hurts, my left arm now has two IV lines going to deliver what I need, my nurses are finding creative ways to take my blood pressure (legs), and blood is being drawn from my hands. I'm a hot mess, my hair needs washing, and to add to it, I've started to feel queazy. I had a few hours of wanting to 'be brave', then I said, why??? Drugs are my friends.

And here's the thing: we can focus on the road and the bumps, or we can also take in the landscape. Funny story and second tangent: we used to drive down the toll road and every spring the center of it will fill with the most beautiful, full array of zinias and lupine - an absolutely breathtaking display of the beauty of nature. I looked forward to it. I mentioned it to Jim one day, and he asked "what flowers?" Stop and smell the roses...

Don't get me wrong, I'm watching the road ahead because there will be bumps, and I don't know what those look like yet. I know this journey will get way worse before it gets better, the road will twist and turn, there will be dark spots, there will be hills that might seem too steep, things I'm not prepared for. And along the way, there will be flowers, and sunshine and beauty too. 

And speaking of the landscape, yesterday as I hit this bump on the road and let it overwhelm me, I was showered with love just at the perfect moment. I'm now surrounded by posters of family pictures, a Wonder Woman banner reminding me that I've got this, I have a Wonder Woman gown, books of encouragement, dry shampoo (trust me, it's necessary), a box of chocolates, chocolate pastries (yesssss!!!!!), cards, all sorts of helpful things and a reminder that I'm not alone. Thank you, thank you, thank you for this - y'all know who you are.

Am I scared? At times, yes. But I won't let that take over, this is not the center of my life, and this bitch ain't taking me down. 

Stop and smell the roses, because the journey might be bumpy, but life is still beautiful. 

Road Trip Detour - the New Journey

Ah... We have our plans, our destination, our map in front of us, and all of a sudden, wham!!, it all changes. In the blink of an eye our destination reroutes, like a bad GPS mistake, except it's not a mistake and you can't make a U-turn. 

That's where I find myself, unable to make a U-turn. And I know there's a reason for that, so I'm examining the new landscape and figuring out how to navigate it, because I know there's a branch on this road that takes me back to my original destination. 

Getting a leukemia diagnosis has abruptly changed our lives. Concern, stress and more questions than answers are a huge part of it, but so are faith and courage and strength. We choose to lean on the latter, because the road ahead is uncharted. I don't have a GPS for this. 

It is a humbling experience as well, and not just from the physical standpoint that health is not a given, but from the emotional standpoint to see the overwhelming support and love that is being poured on us. It has been such a source of comfort and a blessing beyond words. It is humbling to know that people care this much, and even more so to see how they see me, because I don't see me the same way (I mean, I know I'm pretty cool, don't get me wrong, but this is so much more). 

Today, my counts continue to go down, as expected, all within range. So far, I can tolerate the 24/7 chemo drip thanks to antiemetic meds. I am neutropenic, so higher risk for infection and thus not allowed any visitors, not even my husband for whom I'd gotten an exception (covid restrictions are in place). That's a small price to pay to stay as safe and healthy, all things considered. Next week, counts will really go down, and I expect I'll feel way worse, but that's for next week. Once I complete this first cycle (of several), I'll know better. For now, it's two weeks in the hospital, one week at home if things go as hoped for (no infections, no reactions, counts going back up as planned). 

I try to keep my sense of humor. I'm using this picture of me from last summer because my hair really looked great, and that's going to go away. And when it does, don't be surprised to find a poll to see who is the best bold head - Jim or I. Hair will grow back, and that also will be a surprise (can I end up a redhead with fabulous, shiny curls?)

I am still wrapping my head around this; it's been a whirlwind, and there are ups and downs. I am holding on to my faith, which is at the center of my life, working hard to trust God completely (He sometimes makes it hard). I am holding on to prayers and love, because that will get me, us, through this. I am grateful for all the things that have happened along the way to pave the road ahead and allow us to walk this journey, and I pray that I can walk it with grace.

I am grateful for my husband, who is my absolute rock and my forever guy. I am grateful for my children, who are holding up and working through this and keeping their sense of humor, keeping the faith. I am grateful for our friends and our community and our church and our faith. I have so much to be grateful for, all the blessings God continues to provide, and the signs that serve like a beacon to keep my eyes on Jesus. 

In terms of badass women, I have Wonder Woman on my FB profile, but I'd start with the Virgin Mary, because she had to be badass at the tender age of 14 and trust completely. I want to trust like her and let her guide me closer to her son, Jesus. There's Catherine of Siena, who got the Pope to get his act together and return to Rome. There's Joan of Arc, also a teenager who fought like a soldier. And from the fictional ones, well, Wonder Woman. She is fabulous, let's face it, and I may not have the boobs, but I want to have the attitude. 

Love to all. More to come.