Hard week… but lots of love and reminders

Taken from my latest fundraising blog at https://www.giveforward.com/fundraiser/lykf/heather-snow-s-city-of-hope-she-has-enough-money-for-the-support-she-needs-in-los-angeles-#

My dad left Denver this morning. He’s been here since sometime in September. I liked to scare the living shit out of him every time he tried to leave prompting him to stay another month… and another week. This week was unexplainable low blood pressure, the ICU and a touch of pneumonia. I had this elaborate plan to wrap everyone’s Christmas presents and send them home with him last night, but, alas, Leukemia got the best of me and so Aunt Heather’s gifts will arrive a little late this year. 
Today i finally gave into the fact that I need a wheelchair. When I went to tell my nurse, I burst into tears right after I finished eating a mini-cupcake and had icing all over my face. Weapons with icing all over your face is certainly not the most attractive look, but I kind of gave up on that a while ago. My hair is clipped uneavenly, i don’t even remember where I put my bras and I haven’t worn makeup since High Plains festival where I performed three days after getting out of the hospital.  
I don’t remember having that energy. To stay up late, to stand up for more than a few moments. I’m eagerly awaiting Justin’s arrival so that I can walk downstairs which I am now afraid to do with no one else in the house. Not that it matters… i spend a majority of my time in bed anyway. 
So,being a teary eyed mess today, Emily told me that I need to remember the good times. And she’s right. In less than 10 days, I leave for a trip that is expected to save my life. Only three people have had this type of treatment before me in the world. It’s going to be a hard road, which we’re pretty prepared for.
ive asked you for drawings, ive asked you for pictures… and now I would like you to post a happy memory of us that we shared together. I’m no stranger to laughter, so this shouldn’t be hard.
And while we do that, let’s give my dad a big round of applause for sticking through the hardest stuff, my bad days, my good days and the birth of his granddaughter back home. I miss him already.
1 day until I’m scooting around in a (hopefully purple) wheelchair
9 Days until departure
10 days until I get to see a few Penn State Friends that are attending the Rose Bowl… down the street from where I will get my treatment
11 Days until I’m admitted to City of Hope and yet another round of chemo. Praying that my heart can hold up to another round and hoping that after all of this, I get to remember what it’s like to be me. In a body that works. 

Thanks for the fight, Cicily. I’ll always remember my Leukemia neighbor. 

Extremely saddened by the loss of my friend Cicily Janus, belated as I was battling my own leukemia ugliness. No excuse, she was a special angel and just didn’t have enough strength to help her. I relapsed about a month after she had and couldn’t help her anymore with finding doctors and clinical trials and finding a way to see her kids or pay her medical bills and visit her. I was tired already not even knowing I had relapsed and was trying my best to keep her spirits up. When I relapsed, I loaned her my people. And then I needed my people. Cicily, I hope your ass never has to be hooked up to a pump again, that you have wispy hair, no fevers, and only cupcakes and flowy hair in your peaceful place. And that body hair is non existent along with calories. 
Fuck cancer. I met her when she was in the room next door to me, you see. Justin struck up a conversation in the elevator as she was leaving and very excited about going outside for the first time in a few months. I cry every time. Sometimes people just don’t see the tears… or maybe they do, they just don’t say anything. I put on a smile and pretend it isn’t a big deal because the next stop is usually home. Home is just as goal. The little stuff is the goal.

You we’re so kind when someone was in the room that needed a listen. You always gave me gifts and I assured you I wasn’t there for gifts, that I did t need anything from you. But you always made something. A pillowcase, wrote down a favorite recipe, stashed me some candy. You had such a kind heart and so many beautiful qualities. I witnessed someone self employed try to figure this out with insufficient healthcare in this world where children have the disease, but we can’t see children. And you had three. Three that you couldn’t see. I would’ve lost it. 
 We’re still neighbors now because you promised to haunt me, but I’m still fighting, I don’t plan on being your next door neighbor right now. I need a little more time in this place. I gotta finish our bucket list. 
#fuckCancer #tooYoung #TooTalented

Heather’s Challenge # 1

I challenge you…
To a minor effort… which will make a morbid task less morbid if you all do it with me. I’m urging friends and family to do the same. The closer I get to done with this task, the better I feel. Although, I refused to talk about it for a very long while. 

Why is it that we wait until something happens to get our living wills, wills and estate planning done? It’s hard enough when we die for our families to deal with our loss, but then they have to go through figuring out how to pay for our funerals, or where exactly we work, and who gets what. Or simply, if you want to stay on life support forever.
I, for one, have always felt that an open casket would be weird… and then I told my mom I wanted to be bronzed and put in their front yard. Clearly, this is the best idea I’ve ever had. 
I also have a pact with my closest friends to go through my apartment and take anything that my parents wouldn’t like to see and the locations of those things… You know, like my expensive shampoos, joke books and anything but granny panties. (which I had done when I went into the hospital and my parents ended up living at my apartment. Luckily, Emily Chaney did that before I ever woke up from being intubated over a year ago.)  
Anywho, join me in the fun of doing the arduous task of thinking about who gets what and whether or not you what to be hooked up to a machine indefinitely. Make a will. Fill out the Five wishes form. Plan your estate. Whatever. Do for you what needs to be done so that your shit doesn’t get tied up in legal battles. 
Like this if you’ll help me by doing something we all should’ve done a while ago. I’ll be doing the same. 
P.S. I’m still fighting and not dying. I’m still here… just in a bubble waiting for my clinical trial to start. Be The Match needed a lot of additional information on why I need more of my donor’s cells, so things have been delayed. My wish is that we find a way to do this faster. Time is not my friend here. Please pray for a speedy collection of cells from my generous donor and Be The Match so that I can continue on making the funny and living with love. 

Here’s a link to help you get started: 

Poop jokes. 

I keep wondering if you guys are still along for this long bumpy ride of Leukemia… I thought that I’d be done with it now too. I was already volunteering for Leukemia and planning my way to educate people on this road I didn’t plan on. I was sure that it would all be behind me, I’d be back to work and back to doing comedy… but here I am, again in a hospital bed. With a lot of hope that I’ll make it to the Car-T cells and that the clinical trials work…
I’m feeling good… the running conversation at the hospital among the nurses every time I’m in here is whether or not I’m going to poop. You see, I have these long legs. And marrow grows in the long bones, so it’s often painful for me to stand, and very painful when bone marrow is under production. (These long legs are a f-ing curse!)So, I’m on quite a lot of pain medication, which causes constipation… the moment finally arrives tonight and the

toilet breaks in my room…
So that’s how I treat each moment right now. We had a good laugh here, and much to my dismay, it was about poop. But, it’s the little things that help this all move along
You can feel badly about me being sick, but don’t feel bad for living your life and laughing at poop jokes. I’ve been given another year already with this horrible illness… when I easily could’ve died before I was even diagnosed. I’ve been given a year where I’ve mended relationships, grown into a different person, fallen in love more every day with my boyfriend and am reminded that the little stuff is the stuff that we miss most when we’re away from our loved ones.

I’ve been reminded of all of the stuff that I’ve done and still want to do. It’s very true that I am extremely sick. But, I’m feeling stronger again, armed with more knowledge, and love. Take that, leukemia.

I’m not dead yet!

This is a long one. Buckle up, homies! Please excuse typos and profanities. I still am on more drugs than all of Denver Comedy combined. 

I’m going back under the drill this morning for another biopsy… for the past few weeks, I’ve been chanting under my breath in moments when my mind begins to race… “I am healthy, my cells are healthy, I am happy, I’m in love, my blasts are clear, I am healthy” basically, whatever I come up with that’s positive.
Really have been hoping and praying that this chemo is doing it’s job. However, it’s job looks a lot like the effects from Leukemia. So, this biopsy is to see what my bone marrow is up to… sneaky little bone marrow!

And, it’s to get a test to see if I am eligible for UCLA, City of Hope’s clinical study. If I’m not in remission, I may head there sooner than later. If I am in remission, I’ll head to Seattle after a few more doses of chemo. 

I’ve been relatively silent and in my head for the last few weeks… partially because I needed to take a hard look at my med list with the help of others and I needed to find a healthy headspace before shouting my message into social media. I cannot stress how important it is to have advocates with you to ask the doctors the harder questions when you’re too sick or tired to ask them. I am so incredibly blessed to have that in Emily Chaney, Nora Lynch and Gregg Snow… and Justin. My doctors and nurses think that Justin is like nothing they’ve ever seen. He’s bridging the big gap between health care centers to make sure that doctors are communicating with each other. These people are so talented and so incredibly busy, and they haven’t encountered a pair of fighters like us before. And, I hope we’re helping to make it possible for other to do the same. They joke that he probably knows some of this stuff better than them. (We have a not so secret plan to write a book together about our strategies from a patient and caregiver perspective. Talking about the mistakes we’ve made, the things we’ve discovered and learned and thinking of the world as our medical center. Helping the doctors communicate more with each other… and also food and alternative therapies and how disconnected the health care industry is today with those. It’s not their fault, but it’s important to communicate with your doctors, especially when the questions seem out of line. In asking my doctors about Marijuana for appetite and nausea, I learned that there is a mold that grows on MMJ that can’t be cooked out. This can cause pneumonia and other fungal infections that can kill you. They had an alternative with is a regulated THC pill. I take it at night and I’m hungry in the morning. I also didn’t want to take melatonin because it can decrease the effectiveness of the treatment. No reason to hide wanting to smoke pot from the doctors. They’re on your side. It’s better to stay informed than think you’re going to be ‘in trouble’)

I’ve been honest in saying that the results of the last two biopsies have made me sad… and it’s been hard to turn that around. I still am disappointed. Sure, no one wants to go through this. But, I’m learning to be easier on myself. In the words of Sarah LaVigne, “dude, if you want to lay around and watch movies all day, do that. If you want to fucking fingerpaint, do that.” I’m too tired to do everything that I want to do, including going back to work, and that’s okay. I have to shift gears and find peace. Enjoy the moment… even if it’s simple. I watched a squirrel for 45 minutes yesterday try to get an apple up his tree. I spent 3 hours in the clinic with Emily while we strategized our plan for chemo this week. (I love that I have friends come sit with me during the boring stuff) I got a wonderful and much needed massage from Abby Jane Palmer and sent her home with some veggies from our garden (which is insane, btw… please hit me up if you love cherry tomatoes or jalapeño peppers. I can’t pick them because I almost passed out last time I tried, but you can!). I did my taxes… on my phone! I watched the Michelle Obama speech that everyone is talking about. I ate a breakfast burrito supplied by Caroline for dinner. And that was a damn good day. 

I’m going to have to be okay with taking it easy. This weekend I did so much laundry, it made my legs hurt and that was a reminder. Slow down, Heather. Don’t push through right now. I might be sick for a while… I might not… It’s entirely possible that I won’t make it. I am a little weak physically, but strong in other ways. My biggest risks right now are infection, GVHD, and malnutrition. Justin wipes the handles, door knobs and light switches every night. Our bedroom is a war room with dry erase boards everywhere. My job is to wash my hands constantly, carry masks with me just in case, to eat SOMETHING (I’m now at a whopping 147lbs at 6′ tall) It’s weird that germs are my biggest enemy. I hope when all of this is over, I accept that germs are going to be out there. For now, I am bubble girl. I also found that it helps me to have at least one phone call a day with a friend or meet up with someone once a day. That keeps me out of the darkness. Unless, of course, they’re a negative gossipy Nancy. No room for negativity or gossip in my world.

So, I guess my point is: be kind to yourself. Don’t live every day like it might be your last. You’ll miss the little stuff. Unless you want to and have the time and funds, I just find that to be impossible. And I’m not going to learn how to rock climb today. But, I can sit and learn how to play the banjo, (Graciously given by Damian Griffin and friends). I could spend some time with my dad and his big, goofy dog. Or, I can meditate and journal. Or nap! Naps are my favorite. Some days are going to suck. And that’s okay too… it makes you appreciate the good days.

Don’t take this all as me giving up. I’m fighting my ass off with the intention of survival. But, I may also get hit by a bus tomorrow… or a plane! While I’m taking a shower or something.

I hurt, I’m tired and I’m still here. Fighting the invisible. Probably doing a lot wrong and some things right. And being totally cool with it (most of the time). Was super embarrassed when I had a bad reaction to a medication and couldn’t stop throwing up in front of DENVER COMEDY CHAMPIONS Nathan Lund and Janae Burris. I’m ready to laugh about that, guys. I now have an emergency contact list with phone numbers (like a little kid).

People have been asking how they can help… cooking is hard for us because I’m not allowed and Justin doesn’t get home can’t cook. So, healthy frozen dinners that we can pop in the oven or microwave have been great. My mom has been mailing the most delicious cookies. (Mom, have received requests for chocolate chip cookies, banana nut bread and zucchini bread) One of Justin’s dog park friends dropped off a vegetarian lasagna (Justin is a vegetarian that eats fish) and we finished the whole thing in two days. It was so good that I dreamt about it. Or, gift certificates to Safeway or Natural grocers won’t go to waste. If you feel like mowing a lawn or trimming some bushes… we need that. There’s a donation button on my website (sixfeetofsnow.com) or Venmo me if you feel like sending cash. I’ve been keeping my Leukemia wish list up to date. Or call me or send a note. Traveling? I love postcards! I may not be able to respond right away, but know that I appreciate them. Everything helps. Also, Comedy Works has been collecting buckets at their shows and have been paying a lot of my bills. So, go support Comedy Works! I have no idea how to thank everyone… it’s been truly humbling to experience ongoing support in this short attention spanned world. I had no idea that this would all take so long and I’d still have you all praying and fighting alongside me. I’m so, so, happy knowing that you all have my back. When I say that this hasn’t been the worst year of my life, I mean it. And it’s because of the love and support I received from my family and friends and Justin. Having met such an incredible partner right before all of this started has truly been a gift. 

(P.S. I have tons of friends in LA, I know… wondering who is near City of Hope should I end up there? Same with Seattle? Anyone near Fred Hutch?)

Last night,Tomorrow, and my first time on stage in a while and where to buy tickets.  All at one of the most respected festivals in the industry.  Promising not to suck. 

There’s really not a community that I’m prouder to be a part of than Denver Comedy. Last night was so awesome seeing comedian friends. They were the only ones that collectively knew that I wasn’t allowed to hug anyone. I collected fist bumps like Pinterest puppy pictures. Also, thanks for all of the kind words and welcoming of Justin. He’s my hero and it was funny to see him applauded and known by all of you. He’s not on social media, so he has no idea that we’re all humbled by his tinder love cancer fight. 
All I can say is that you guys are the best. Energy is sort of an every other day thing for me. So, I’m excited for tomorrow and resting up so that I don’t go narcoleptic on stage. 

May not see you guys tonight, but excited for every piece of you I see. Kyle Kinane’s Navy Seal Tickle joke made my day. And Jordan Doll, as usual, made me spit out my drink. Because I was wearing a mask, it was extra hilarious because it ended up all over my face. 
I’m on the Denver Up and Comer’s show at Mutiny Cafe Saturday Night @ 7… Because I haven’t been on stage for quite a while. It’s a new me. I hope you like it… If not, worse things have happened. Heehee. 

Get your tickets here!

Baby Steps…  Or Leaps. I’m more into leaps. Leaps with safety harnesses, masks and Antibacterial Soap. 

Spent a majority of the day trying to get rid of a headache that was caused by low magnesium because I connected my take home magnesium IV too late. Once it was about halfway through, the headache slipped away. Have I mentioned that I think haves 3 port central cathedar line coming out of my chest? It’s much easier for them to draw blood every other day. However, I call them udders. Was so glad because I was able to rally and pick up my performer’s pass for High Plains Comedy Festival
A little nervous because it’s been a while since I’ve been on Stage, but the kindness and love I received from my fellow comics put me at ease. Come hang with me on Saturday. It’ll be a hoot.

Remember, No Hugs. Fist bumps for health!

High Plains Comedy Festival – Denver Up & Comers