Round 3

He trudged through a vast empty field that was once vibrant and filled with hard work and the hum of busy-ness, often cut with shouts and laughter. Mountains gone. Everyone gone. The neighboring lake that was once full and teeming with life was now drained and silent, a puddle. A thin grayish, slippery, watery substance settled at the bottom. He suspected the slime was what was left of his comrades, his friends, and knew that even that sad small pool would soon be gone too. He blankly looked around unsure of how to feel. Maybe sad, maybe defeated, maybe relieved, or maybe angry that they won't even leave the dregs behind. No, they'll come back and scour every last nanometer. They won't stop until everything is dead and gone and it will be as if nothing was ever there to begin with. He'd heard rumors about the ruthlessness of his enemies. He'd heard they kill their own people just to be sure nothing was infiltrated. He'd heard sometimes they come in with armies of large machinery breathtakingly scary, unimaginably horrific and literally cut out entire fields all at once, leaving nothing behind. They even remove the sky. He'd thought it was all hearsay, tales you tell around the campfire when the day is done. But now he knew. He believed. He wondered if he'd make it to see that. He wondered if he'd die directly by their hand or if he'd fall to his knees and melt into the ground they way he saw so many of his friends go. An involuntary shudder passed over him at the thought of either horror. He wondered what they'd bring in the next wave. With no sense of purpose and no hope for victory, he really didn't care. What were they fighting for anyway? Territory? For what? More mountains? Who cares anymore. It was over. He knew it. They knew it. There wasn't even anyone left to surrender. Just him. Alone. He hoped that if there were any other survivors they were smart enough to stop fighting and to do what he had just, in that very minute, resolved to do. He walked over to what would have been his campsite where he last saw his closest friends, thinking he'd like to die where they died. Almost grateful that he got to choose, almost relieved that it was finally over. He kneels down now and allows himself to fully feel the lightning bolts of pain that have been shooting through his body; the tremendous pressure that's been threatening to crush him for days now, pulsating all around him. He whispers something we'll never hear, never understand. It's quiet now. It's over now. He closes his eyes and slumps over, finally succumbing to the pain. His body shifts and mutates, collapses in on itself, and melts to the ground. What is left, a gray viscous fluid, slowly makes its way across the field to join the sludge at the bottom of the drained, muddy lake. It waits for the next wave that will take them out for good. And it will be as if they were never there.

----- 

The tumors have shrunk so much I can't feel them anymore and neither could Nurse Nicole. In her words: Wow. 

Thanks, Vlad. Thanks, everyone. Prayers and Care Bear stares are working. <<tears>> 

Care Bear staaaaaaare. (Courtesy of Sara) 

All Good Things Must Come To An End

You know what's great? Not having to shave my knees.

I love rainy days when there's nothing to do, and nowhere to be. I just got home from dropping Sara off at her brother's and I'm not leaving the house for the rest of the day. Sara came to visit because she set up an amazing day for me yesterday. She has some contacts from back when she lived in NYC. One of those contacts is the wonderful Miss Sherry Vine. Sherry Vine set up an appointment with her personal stylist at Barry's Bitz and Pieces; came with us, and introduced us to Edward, also wonderful and so knowledgeable. I got to go shopping with the pros! I brought pictures of hairstyles I like, and pictures of my old hair. We tried on about 5 different styles. It was so quick and easy because Edward knew exactly what to pull. And you know what that means...wig montage!! Cue the music! 

Okay. You sit there and look bored, and then first I'll come out in a couple of wigs that don't look right on me. You shake your head, and give a "thumbs down." Then, I'll come out in a funny one, and we'll both laugh. Then I'll come out in one that almost works, and you make like an "I don't know, maybe" kind of face. And THEN, I'll come out in a perfect one, and you smile and nod and make an "okay" sign with your right hand.

Montage! 

Winner! 

(Okay now the last shot of the scene is us walking down the sidewalk with shopping bags. Ooooh maybe while the sun is setting, and I'll put my head on your shoulder. Boom. Lifetime movie.)

So for real, it was so much fun, and also emotional. I cried a couple of times. I know I said I dig the bald, and I do. It's just that I didn't realize how much I missed feeling "normal" until I looked normal. I'm so grateful to Miss Sherry Vine, Edward, and of course, Sara for doing that with me. All three of them were so generous and patient. They made a day that could have been stressful and worrisome incredibly fun and story-worthy. Sara is amazing for arranging that AND for still coming up after her hospital stay last week. Oh and her parents sent me a fruit basket! <3

Christmas was great. We stayed down in South Jersey for a few days. Our family does a huge Christmas Eve dinner that I absolutely love and look forward to every year. I was so excited to be able to share that with David this year. I got some thoughtful gifts- a few from friends of my mother who were so kind to think of me. We also got in some quality play time with my niece. I posted pictures of our head paintings in instagram, FB, and twitter. If you missed it- It was a great way to help my five-year-old niece get comfortable with Aunt Faith's bald head. She was very hesitant at first, but then she got into it and went crazy with the glitter. I feel like this might be a regular thing when I go down to visit, and that is okay by me. I'll do anything to make that little girl happy, especially if it involves glitter. 

It says, "I love gumball machines." She knows me so well!  

Right before Christmas, I had a really good conversation with my cousin who went through his own battle with cancer 20 years ago when he was 20ish. His was much scarier than mine. It was in his liver, lasted over two years, and required two cycles of chemo, blood transfusions, platelet transfusions, and I believe a bone marrow transplant. Even though it's been 20 years, he still remembers it all well, and had a suggestion that has made a huge impact for me. Ready? Get this. Tomato soup. Tomato soup was the one thing he could eat that drowned out that terrible taste. Thursday night, I picked up the magic mouthwash and went to the grocery store and bought tomato soup. It was a difficult trip. Two whole stores in one outing. I had to sit and rest on a bench on the way home. (I'm getting good at not being a tough guy, pushing my body past its limits.) Eventually I got my booty home with my booty. I swished the MM around for 1 minute, spit it out, and had to wait an agonizing 30 mins before I could try to eat. When I had 2 mins left on the MM clock, I zapped the soup in the microwave. Dude. He was right. I can eat tomato soup! I was literally crying tears of relief and joy in my kitchen over spoonfuls of tomato soup. 

After that I had another session with Vlad, this one bringing to light how bad I am at really letting people help me and truly allowing myself to rely on others. This is a lesson that keeps coming up over and over in all parts of my life. If I don't learn it soon, I'd hate to see what else could happen that would force me to conquer it. I'll get it, God! I promise! :D

We're all friends here, right? I almost wasn't going to share this one, buuuuut here we go. One of the other strange side effects of chemo has been some skin discoloration. It's mainly affecting my underarm area. I did some googling and it's a fairly common side effect with a few possible explanations. One of those is that maybe because cells are no longer regenerating, hair follicles are getting stopped up with dead cells. They suggested gently exfoliating. So I gently exfoliated and did see a difference. So I a-little-less-gently exfoliated and saw a bigger difference. So I not-so-gently exfoliated and was pretty happy with the results. Then, I noticed a couple of stray hairs that hadn't fallen out yet, so I grabbed my shaving lotion and lathered up. Let me be more specific. I grabbed my Dr. Bronner's lemongrass lime shaving lotion and lathered up my freshly exfoliated armpits.

Did you hear me? I said LEMONGRASS LIME.

Aaaaaaaaaaaaaaaaaaaaaaaaah! 

Some other comparable scents could be ginger-cayenne, jalapeño-ghost pepper, or perhaps peppermint-salt. Needless to say I'm back to being unable to wear deodorant for a few days. Thank god it's cold out. 

Aaaand last but not least, our final wedding pictures came in from Denis. They're gorgeous. I don't know how we're going to choose. I posted a few favorites below. I might have some good news next week about a wedding planner. I've given in and made some phone calls. It's just too much to do in my own while going through this, and we're going to need someone in the weeks leading up to and on the day of the wedding anyway so I might as well start now. 

I think we're all caught up. My next infusion is Tuesday. I get to test out the new port. That'll be exciting.

It takes me a few days to write these posts. I keep an ongoing note open and write when I can. I started this one Thursday. Now it's New Year's Eve. We're spending a quiet night with David's parents, popping a bottle of sparkling apple cider- which is a perfect way to end this year and bring in the new one. I have to say that 2016 was still the best year of my life so far and I bet 2017 will be even better. I can't wait to see what happens next.

Happy New Year, everybody!!

Season's Greetings!

Gifts Galore

It was only a matter of time. Last night, David did the full razor shave on my head for me. The little teeny dark hairs from my buzzcut were starting to show up everywhere and my head was getting patchy. It looked like a 15-year-old boy's beard. I'm sure my dad was excited to answer my questions about how best to bic my head. Considering he's the father of 3 girls and grandfather to one little girl, I bet that's a topic he'd thought he'd never have to address with his children.

So now I'm smoooooooth. It feels super weird. Since it's all not totally out yet, there is like a 5 o'clock shadow or something going on, also patchy. I considered bleaching my head to even it out. Then I realized I was actually concerned about my bald head looking not bald enough and that maybe I have some vanity issues I need to put in check. Don't worry, Mom. I worked through it. I'm not bleaching my head.

Backtracking...I just noticed it's been a whole week since I last posted. My bad. I'm not gonna lie to you. Friday to Tuesday were kind of rough. I was extremely tired. Slept a whole lot. We had tickets to go see Louis C.K. at MSG on Friday, but I was too exhausted so we gave them to a friend. Saturday, I felt better but did a little too much. My ex dropped by to visit. <<pause>> That sounds weird calling him just an ex. We were together for almost 10 years, split amicably, and he's been on my "support team" since he found out. So just know when I say "my ex" I'm talking about a guy who is a friend; was a good partner although things did not work out between us, and has always been a good man. <<unpause>> He stopped by, gave me a meditation coloring book which is awesome, and a PEZ dispenser which is technically from our pet turtle, who he won custody of during the split. David came home while X was still over so we all sat in my living room and got caught up, which was pretty damn cool. I took a nap for a couple of hours after he left.  Then, our friend H came over to visit. We made David watch Love Actually. He sat through it and only cracked about 7 jokes. I'm very proud of him.

It seems like everything I do requires a 1-3 hour nap after to make up for energy loss. Sunday we met with the amazing couple who will be officiating our wedding. They are the same people who own The Giving Tree, the very special yoga center in our community that I've mentioned before. We spent 2 hours with them going over ideas and things we want to include. They've done everything from the usual "Dearly beloved..." to a biker wedding that included a blood vow AND a reading from The Velveteen Rabbit. We won't be going that far, but it does mean we'll get to really personalize the ceremony to include both aspects of our respective religions. I grew up Catholic and David is Jewish. Neither of us is practicing but it's important for us to honor our ancestry and upbringings. Anne-Margaret and Anthony will help us do that while keeping it very much our own, and tailor made to fit us as a couple. We are really looking forward to this part of the planning.

I needed a 3 hour nap after all that excitement. The rest of Sunday was quiet. I stayed in bed for most of it. I had a moment of weakness and tried to eat some macaroni and cheese. That did not go over well. All parties involved (brain, esophagus, stomach, etc.) agreed that we would not do that again.

Monday, I worked from home. Slept a lot more. By Monday morning, it was pretty impossible to eat. It seems like there are going to be 3-4 days in every cycle that I just don't get much food in. I think I can handle that if I prepare and bulk up ahead of time. Saturday night I ate a good meal, and the next time I was able eat a real meal again was Wednesday morning. And by "meals" I mean a third of a sandwich and a few fries, and 1 banana, 1 pear & 16 cherries. Those are 2 "win" meals for me right there. I am currently down to the weight I was when I graduated high school 17 years ago. But now that I have an idea of the schedule, I can get ready ahead of time to try to curb some of the weight loss. Also, lots of people have have mentioned "magic mouthwash." I called Nurse Nicole today and she sent in a prescription to my pharmacy. It will be ready in a couple of hours, but it's not covered under insurance. $52 for mouthwash. (But I hear it's magic!) It's taken every ounce of love, patience, and tolerance in me to not wish hunger pangs alongside chemo mouth sores on the people who decide what's covered and what's not.

This next bit isn't even the insurance company's fault, but it's another example of the fun I've had dealing with them during all this. The hospital somehow coded my 2 day stay incorrectly so that the claim submitted said I was admitted for "unspecified acute sinusitis" (a head cold) instead of the "life threatening" Neutropenia that it was. Naturally, they're denying coverage. That took 3 days of several phones calls to several numbers and a whole lot of "Not me. Let me give you the number to..." Supposedly it's fixed now, but I'll have to call the insurance company one more time tomorrow to confirm they received the corrected claim. Fingers crossed!

Also this week, 6 of my coworkers stopped by to visit before heading out to the company holiday party. That was awesome. Don't tell my mom (Mom, blindfold.), but I let them all in without wearing masks. I did make them all Purell up when they walked in and no one was allowed to make out with me. (Mom, you can take off the blindfold.) They got me a beautiful triple orchid. We've named her Lenore. I will do my best to not kill her. And one of the girls brought me her 2000 piece puzzle to keep me occupied for daaaaaaaays. They stayed for about an hour and I cried a little when they left. I love them and really miss seeing their faces every day. Then, I Lysol wiped every touchable surface in my home.

Speaking of gifts, we've been getting some great stuff in the mail! David's Uncle and his wife M sent us a Vitamix as an engagement gift. That is just perfect, especially now because all I seem to be able to eat is smoothies or juices, and our little blender was getting quite a work out. The Vitamix is a beast! (Good news, guys! I'm not going to starve to death!) One of my amazing friendors who I've been working with for years (see what I did there? That's "friend" + "vendor") sent me a giant box of differently flavored popcorns from Harry&David. Another vendor who I could also call a friend sent me a pajamagram. It's a giant fleece onesie with a hood, a kangaroo pocket, thumb holes on the sleeves, and zip off footies. Yes. You heard me. Hoodie-footie pajamas with feet that zip off. David (patiently) had to use three different tactics to get me to NOT wear it outside to go to the bank.

I think that's pretty much my week. The food stuff was hard and I'm just so. darn. tired. I slept a lot. I didn't really want to do anything. Luckily most of the people I saw came to us. I left the house 5 times for a total of approximately 6 out of 168 hours in the week. I'm becoming quite the little hermit. :)

#pajamagram

Live Long and Prosper

Between my bald head and this new 3 pronged port protruding from my chest, I feel like I belong on Star Trek. 

Seriously though, this port thing hurts like a mofo. I don't why I thought cutting into a vein, digging a hole out of my chest and running a catheter through it would be no big deal. Tuesday, it was numb most of the day so I guess I thought I was getting off easy. But then I woke up at 3am pretty sure I was about to bleed out or something equally frightening. Turns out, it was just normal pain, which not surprisingly, I don't like. I'm wary of pain meds, so I've been toughing it out with Tylenol. I had a "poor me" moment earlier today when I got all afraid that taking Tylenol would lower a fever if I developed one. A fever is the best indicator if I get neutropenic again or if one of the incisions gets infected. So I panicked and wouldn't take anything. That was pretty dumb and unnecessary. My Neulasta shot bomb went off without a hitch yesterday and both sites on my chest are still sealed and clean. Sometimes I get unreasonable, but I get over it. I think I'm entitled to a little tiny teeny bit of hysteria every once in a while. Okay, maybe not entitled, but it's understandable, right? Right.

I had a FaceTime appointment with Vlad last night.  We've been doing some healing work and visualizations. My new favorite was imagining a bunch of little people in hard hats (like Doozers!) with shovels digging out the cancer and sending it out of my body via mine carts. But now he's having me visualize in first person. No more passive observation of the Doozers. Now I have to actively take part in the excavation. I close my eyes. I go inside. I wander around with a bucket and a pick axe. "Anything I can imagine is real" is my new mantra, given to me by Vlad. I swing my axe into thick, ashy sludge and push forward until I hook into something hard. That's what I'm looking for. The hard gunk that's settled into the cracks of my chest wall. I yank the axe back and ribbons of fire shoot up to my temples. My head fills with rocks and I can't hold it up anymore. Waves of nausea wash over me and I have visions of myself on my hands and knees violently vomiting. The black sludge pours out. And now I'm back in my bed, listening to Vlad's humming over soothing music, and I'm crying uncontrollably. Filled with self hate and an overwhelming feeling of failure, like I f'd up by getting sick. It's somehow my fault. These are the things he gets me in touch with and forces me to face head on. I can see my crazy guilt clearly- hating myself for being weak, for what I'm putting my family through. These things lurking in the dark- they grow roots. They set the tone. These are the things that will bring me down. This is where I can feel active in my own recovery. We find these cancerous feelings, shine a light on them, and dig them up- even if it hurts. The doctors and nurses can fill me with poison and kill everything in its path. I will pick away at the source and flush it out.  

Six months ago, I would have told you I was invincible. I would have been wrong. My best friend, Sara, was admitted to the hospital this week coughing up blood. I would have said she was invincible too. She eats well, runs, goes to the gym, doesn't smoke, doesn't drink too much. She's healthy. She has a good job. She doesn't live in a crazy nonstop city. She takes care of herself. And now she has a pulmonary embolism. They caught it. She'll need to make adjustments, but she'll be okay. But Jesus, that was close. And I think, "That would be mean, God. That one would hurt."

She sent me this the other day: 

It's funny. It is. But what I can't stop thinking about is that isn't even close to over and I wonder what else will be thrown at us before it's all done. How close to home will all this hit before I'm out of trite sayings, and my Pollyanna attitude falls to the side, and my faith falters? Because I can be in pain. I know I can handle my own pain. I don't know if I can handle watching the people I love hurt. How much faith do I have? (How many licks does it take to get to the center of a tootsie roll pop?) One of my favorite sayings is "Almost only counts in horseshoes and hand grenades." If I can say almost, then it didn't happen. Sara's okay. It didn't happen, but she's hurt. And that scares me. So here we are again with me happily agreeing to handle this with grace as long as it's on my terms. Bring it, as long as I'm the only one I have to worry about. 

Sobriety gave me a whole new life. I felt (still feel) so lucky to live two lives in one lifetime. The tools I was given that keep me sober are the same tools I use to keep me from going under through all this. Don't be afraid to look inside at the ugly parts: my self-centeredness, my pride, my expectations of what "should" be and how I "should" be treated. I have to be willing to see where I am causing my own pain. When I really look, I see it everywhere. It reminds me of this parable a good friend posted once. I don't know its origin. I found this version online:

A farmer and his son had a beloved stallion who helped the family earn a living. One day, the horse ran away and their neighbors exclaimed, “Your horse ran away, what terrible luck!” The farmer replied, “Maybe so, maybe not. We’ll see.”

A few days later, the horse returned home, leading a few wild mares back to the farm as well. The neighbors shouted out, “Your horse has returned, and brought several horses home with him. What great luck!” The farmer replied, “Maybe so, maybe not. We’ll see.”

Later that week, the farmer’s son was trying to break one of the mares and she threw him to the ground, breaking his leg. The villagers cried, “Your son broke his leg, what terrible luck!” The farmer replied, “Maybe so, maybe not. We’ll see.”

A few weeks later, soldiers from the national army marched through town, recruiting all the able-bodied boys for the army. They did not take the farmer’s son, still recovering from his injury. Friends shouted, “Your boy is spared, what tremendous luck!” To which the farmer replied, “Maybe so, maybe not. We’ll see.”

You get the point. Now, I get the chance to apply it to my own life. I have fleeting moments when I want to kick and cry about how this or that shouldn't have happened, but it did. Who the hell am I to say it's wrong or bad? When I try to make those determinations, that's when I get stuck at the pity party. That's when I'm at the mercy of my own life views. And that's a dumb way to be, because the truth is I really don't know. 

-----------

In more light-hearted news...

I have a small head. It's a fact. Once, while getting ready to zipline in Costa Rica, the guides had to get me a child-sized helmet. I don't speak Spanish, but I know what the laughing meant when they said, "una pequeña cabeza." My baldness is bringing up a lot of small head insecurities. I got these little cotton sleep caps and they're so warm, but I kinda look like an extra tall Pygmy synchronized swimmer in them. I have been unable to wear one in front of my future husband as of yet. <<Hears David walking up the stairs; tears off cap and flings it across the room.>> I'll get over it, but for now Phants is the only one who is allowed to see me in one. He wears one too sometimes so I don't feel so bad.

He's a very thoughtful elephant.

That's all I have for now. Peace out, mofos.

Captain, my chest prongs are picking up some unusual readings...