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)