Limbo, expectations, hormones and other random thoughts

Disclosure: In case the title didn't give it away, this is a long, rambling assembly of thoughts and feelings. You've been warned. 

Limbo - it feels like floating sometimes. Days run into each other, morning turns into night without much to report. In this limbo there is too much time to wonder, project, feel and hope for. There is the constant need to remind myself that this journey is long, twisted, and requires me to take it one step at a time. There is too much time to hear about other stories, other journeys, some with the outcome I hope for, some not so much. And thus, there is much time to worry if I let myself feel that. For the most part, I refuse to. 

On the other hand, in this limbo I also project - I plan for the future, for when this is behind me, for the things I want to do, like a trip to France with good friends, going back to Hawai'i and visit turtles, taking a cruise for our 25th anniversary, celebrate three years of birthdays that didn't get properly celebrated (it will be epic!), and so forth. 

I also have to think of the possibility, because there is always one, that I may find the end of my journey sooner than expected. And those moments are driven by motherhood. My two girls. If I were to not be here, what do I need to tell them that can't be left unsaid? I remember the hospital days when I was so weak and out of it fighting c diff, and thinking I should've written letters for them, letters I wouldn't get to write in my weakened condition, things I wouldn't get to say if things didn't turn around - and that was a very close reality I'd rather not go through again. 

So I find myself starting these letters, which take me to projecting where I don't want to, getting into a funk, and pulling myself out of it. I have my girls here this summer and plan to enjoy that, and maybe here and there give them some pearls of wisdom, and here and there find the time and emotional fortitude to get through letters I hope won't be needed, letters that can stay unopened for years to come. 

In this limbo, I'm also learning to adjust expectations. I think the fact that I am tolerating chemo and treatment so well has led me to believe that everything will be achieved in the same vein (ok, I'm also an overachiever) - so I should achieve full remission after this last treatment, which wasn't the case. I should then have a couple of weeks to recover, a "mini vacation", which won't come. So, after a brief moment of disappointment and tears, I refocused on the important and positive news. I am responding to treatment. I am in good shape to move forward. Going into the next round of treatment will get me there and give me the best starting point for a successful transplant. 

I told my doctor he needed pom-poms as head cheerleader. He was so good, so clear that I'm doing really well, so positive that I'm on the right track. I am so blessed to have a good team, to be responding well, to be at home with my family and eating my own meals. I have no right to complain, and I have every reason to continue to be grateful for the blessings, for each new day, for the ongoing prayers and support that come from so many, for the frequent signs I find along the way through which God reminds me He is by my side every step of the way. 

I feel well, I'm getting stronger, I'm gaining weight (in a good way), and I'm also getting hot flashes. How's that for a segue? Yes, hot flashes! Every woman's dream... the bad kind. Hormones are so underrated. When you stop producing them, you figure that out. Hot flashes that sent me into the fridge the other day, only to find out that doesn't really work. And moods... my husband's road to holiness comes from putting up with a bitchy, unreasonable wife more often than either one of us bargained for. Though my job is to help him get to heaven, this is probably not how we envisioned that journey. 

And let's not forget the unspoken truth of growing facial hair that wasn't there before. This is adding insult to injury. Dermaplaning might be promoted for "peach fuzz", but let me tell you it's excellent for not-so-subtle facial hair. Calling it a beard would be hyperbole, though sometimes it feels like it. Gratefully, my eyes aren't as sharp as they used to be. Sadly, my children have eyes like hawks and find it incredibly funny.

The journey started with a dramatic "BAM!" and has eased into what I only hope isn't the eye of the storm. I know times to come will be harder, as I continue to climb this very steep mountain. My eyes remain on my feet, one step at a time - I might be a coward after all, with a bit of hiding my head in the sand. At the same time, though it sounds like a contradiction, I keep the chin up, because as I've come to say, you can't fight if you're not looking at the enemy straight in the eye. 

I keep fighting, I keep praying, and I keep keeping on. Thank you for the prayers, good vibes, positive thoughts, support and love. I will never find the words to adequately express what it all means to me and how it propels me forward.

About the Hair...

Yeah, about the hair. I feel compelled to say something after posting a picture of me with my bald head (though actually there is hair coming back in, but you can't really see it). 

I know that hair for the great majority of women is tied very closely to their identity. How could it not? It frames our faces, defines our looks, and in many cases it's a source of pride and certainly a source of vanity. In spite of most of us having love-hate relationships with our hair, it is so tightly tied to how we look that it becomes part of who we are. 

For many years now my hair has been a source of experimentation. While most women tend to change their hair at tipping points in their lives, for years now I've been changing mine every couple of months to avoid getting bored. Short, bob, mid-length, and even long when I can muster the patience for it. Then pixie it is with one swift salon appointment, and back we go again to play with it. I don't think I have been attached to my hair since my teenage years. 

I knew chemo would take it, though I expected it to happen later in the treatment. Instead, mine started to fall the week after my first round. I've always been told I have a lot of hair, and I didn't really believe that to be true until it started to fall. Copious amounts were left in the shower and on the comb, and I still had a head full of hair. I resolved to get it cut short as soon as I left the hospital. As many of you know by now, that hospital stay was extended beyond anything I could've imagined, and at some point during that stay a nurse helped me cut the whole thing off.

I'm completely at ease with my bald head - probably because it turns out my head is fairly round and symmetrical. I posted a photo of me bald without expecting the overwhelming response and encouragement that followed - and I must confess I don't feel like I deserve much of it. After all, it wasn't so much proof of bravery as it was just an update. A "this is what I look like right now" kind of statement. Still, I am grateful for the support and the encouragement, and all the compliments - if a girl has to fish for it, I guess a bald head is a good lure! 

I don't post this to minimize the struggle of those for whom hair loss is another kick in the gut. After all, I've had other ways in which I've felt that kick, that loss, and that struggle. 

My struggle has been the loss of muscle tone and physical strength. I went in strong, swimming three times a week, dancing, walking, jogging, lifting weights. I came home with a walker, unable to lift anything heavier than my phone, and most certainly unable to keep up with exercise. And as I type this, I don't know when I'll dance again. 

Hair grows back, that's the good news - and I'll be a silver fox. And physical strength? I can get that back too, though it will take some time. I am putting in the effort - hey, I can now do bicep curls with 5 lb dumbells instead of 2 lb ones, walk a mile in 18 min and walk up the stairs! When will I dance again? That, I don't know. And for me, that's a real kick in the gut, but I assure you I will.

So friends, thank you for the encouragement and all the beautiful words. I will post a picture of the new hair when it comes. And when I dance again, you will most certainly know. 

I Got Knocked Down...

I got knocked down. Hard. And I will be the first to say that it is a lot easier to be positive, stay strong and cling on to my faith when I'm standing. Instead, I found myself on the ground, and like a stray dog, being kicked while I was down on top of everything else. 

However, as the song says, "I get knocked down, but I get up again. You're never gonna keep me down." No, you're never gonna keep me down. It's taken a lot of fortitude and effort, and yes, a lot of that faith that at times seemed to betray me, to get back up and get ready to continue fighting.  After all, you can't fight your enemy if you're looking down. 

At the risk of boring senseless whomever is interested in reading this, I will go on and tell the tale. Fair warning: it's going to be a long entry, since I haven't updated this in a couple of months. It also might contain too much information, but then I've never been that shy. 

My last post left us at the point of waiting for the chemo to do its thing and drop all my values, which would lead to me being defenseless and at high risk for infection. The good news is I reached remission after that round. The bad news? I wish I'd ended up with a cold, but instead I got hit with the mother of all infections, the one and only c diff. In my case, because as my husband says I don't like to do anything half-ass, I ended up with megacolon. I had doctors in and out of my room - internal medicine and oncology were expected, and to them were added infectious diseases, gastroenterology, and surgeons.

Surgeons, you say? Yeah... they watched me like hawks for three days and were a hair away from taking me into the OR to take out my colon. Aside from the long recovery and life-altering implications of such a surgery, there was the question of whether I could even survive that in my condition: neutropenic (no immune system defenses to speak of), low platelet count and anemic. I was getting blood and platelet transfusions, and everyone around me looked worried. I was miserable and fairly out of it at this point, so weak I couldn't get out of bed or even hold my phone. But even in this state, I knew surgery was a bad idea. 

I was given shots to stimulate my bone marrow, so I could get some defenses and help fight the infection, which meant potentially poking the sleeping bear. Eventually everyone wised up to the fact that my small intestine wasn't working, so taking oral medication for c diff was pointless. That also meant my stomach had to be full of food that never made it through. I had an NG tube put in (a tube up my nose and down to my stomach), which I will say was one of the most traumatic experiences I've ever been through. And I had a rectal tube added to the mix to help empty my colon. Medication had to be delivered that way as well, since orally wasn't working. 

Add insult to injury, and when you feel that not much more can be taken away from you in terms of your independence or dignity, you end up in a ginormous diaper because you can't get out of bed and take care of yourself in the most basic of your needs; someone else has to take care of you.

And to make things even more interesting, I had two different PICC lines, both of which threw clots, so my 44 days in the hospital were spent mostly with peripheral IVs that had to be redone over and over again, because my veins won't last. I am what they call a "hard stick". I was famous with the phlebotomists. (I was down to two almost-failing IVs and no veins when I was discharged.) 

Things started to improve slowly and enough to keep me out of surgery. I qualified for a fecal transplant, which made all the difference and saved me. I had my doctors looking into it, and I was consulting with one of my best friends, who also happens to be an infectious diseases doctor (and a bit of a star at that). 

There were many moments of fear - fear of surgery, fear of not pulling through and leaving my children and husband, fear of losing so much time the leukemia would be back, fear of running out of veins. Here I was, stuck in a bed in a hospital with time to burn, and burn it I did with doubt, fear, and many questions, with prayers, having to remind myself God had not abandoned me and so I shouldn't abandon Him in my hour of need. 

I spent time contemplating my desert and wondering how Jesus bore all that pain for us. I spent a lot of time asking God to pull me through, offering up the pain for others, and wondering why our Lord's timing seems to always take us to the brink. I spent a lot of time asking for Mary's and Joseph's intercession. And yet more time clinging on by a thread, when despair wanted to take over and doubt clouded my vision. They say, "if you are clinging by a thread, make sure it's one from His garments." 

Oh, how I asked Jesus to let me lay my head on His lap and comfort me. How I asked the Father to reassure me. There were many signs all along that did just that, but of course we forget when the rubber hits the road. Some may call it coincidence, others the universe... I know it's God looking out for me. And while He does seem to have a penchant for the dramatic and takes me to the edge of reason, I can't but believe that He will get me through. 

This has been a difficult journey so far. I knew it would be - I never could have foreseen how hard though, and it's been hell. And there is still more to come, but I am tackling it one day at a time. 

I am home recovering and preparing for the next fight. With the weeks lost, the leukemia cells are back, and I'm going into a clinical trial that is coupling a targeted therapy with the standard of care therapy my doctor wants me on (I'm not strong enough for the chemo option). The goal is to get back to remission and then undergo a bone marrow transplant. While I didn't want to see it back, this therapy allows me to be home, eat at home, see my kid, sleep on my bed, exercise and get stronger to prepare for the transplant. 

I've lost all my white hair. The brown hair hung on stubbornly, and Kat had fun shaving it off. I was right, my head is better than Jim's, and he has a pretty decent one! I am rocking the scarves and hats and channeling Audrey Hepburn. I plan to be a silver fox when the hair grows back (which, shockingly, it's started to do!)

I have weight to put on (silver lining: I'm sure I can fit into my wedding dress AND my dance competition costume from 1996!) and muscle mass to regain. I was lucky to go in fit and strong, but I came home with a walker and needing help to get off the couch or walk up the stairs. I have made significant progress in the past two and a half weeks. I look like I'm 5 months pregnant, but I looked like I was 10 months pregnant at the beginning of c diff, so things are improving. 

And I remain oh so grateful to all the friends who've reached out, dropped off meals, sent cards, and prayed for my family and me through all this. There have been days I couldn't stand, and our community - you - have propped me up. 

I am keeping my sense of humor, and I'm holding on to my faith and my God. He's got me, He's carrying me, and He's lighting the way. There have been many blessings along the way and several beautiful outcomes resulting from my 44 days in the hospital. God doesn't waste an opportunity. He has led me to the cross where his love poured out, brought me to my knees as I lay me down, and now He is working on ridding me of myself so I can fully belong to Him. I've sang this song many times, afraid of what would happen with a prayer that's so dangerous because it will upend your life. I just have to remember He remains in control in the eye of the storm. 

So, chin up, one foot in front of the other, and to tackle what's currently in front of me. The rest will have its turn soon enough. 

(For those of you who'd like to hear those songs: Lead me to the Cross by Hillsong United and Eye of the Storm by Ryan Stevenson)

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.