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 

Day +14 – ANC 60 : DAMNIT

Yep, Day +14 – (ANC 60).   I KNOW. WHY?  Come on, white blood cells…  here white blood cells, here, here, white blood cells.

I don’t want to jinx it, but I hear I’m getting out on Friday. That’s the good word. But, knowing what I know and seeing what I’ve seen, they’re not going to let me leave with an ANC of 60. I’m boring the nurses…  I’ve only thrown up once. I haven’t fallen at all and I take a shower with the recommended sterilizing pink soap every day.

I will tell you that I’m going to be careful. If I see you out and about, I will not hug you. I will wear a mask. I may wear rubber gloves. However, I will fist bump the shit out of you.

Today was a little rough. I knew that my friend Kelly was coming by to deliver the tastiest  healthy cookies ever and some On Guard essential oil. But, I couldn’t hold my eyes open even by 11am. Then, a friend of mine who comes to this hospital every week to do amazing things for people with through the Dear Jack Foundation stopped by. She talked to me until I could hold my eyes long enough to see just one of her and then she had to run off and do some more amazing things.

Then, I was mostly awake for Kelly. She stayed to color… which I truly enjoyed. I colored a picture of a parakeet and she did an abstract picture of what looked like cells (to encourage my cells of course) and asked me if I could name the moments that most filled my heart. The answer was easy…  all of the little stuff. Like when Phil Palisoul brings me anything that my heart desires or simply writes egg-cellent messages on the hard boiled eggs he and Nora would bring. That Nora and Emily check on me daily, like that moment when Kelly came to bring me oils and color or Sabrina having sleepover parties with me.  Then there’s the bigger stuff where Phil and Nora sterilized a part of their house so that I could come over. Or, all of my co-workers donating their time off. I didn’t know for about a month that Comedy Works was collecting buckets to help me with my bills. And now, friends will be at a show and hear the emcee talk about the bucket and me, anonymously. My friends will ask whoever is holding the bucket for me if it is in fact for me and to hear that the comic smiles and winks. Or, to hear that a Lyft driver and Chuck Roy took a moment to pray with me when the driver mentioned me and Chuck updated them on my status. There are so, so many things. Cards…  I got a beautiful letter today from Justin’s Step-Aunt who I’ve only met twice (once while I was on way too many painkillers). Or that a woman who I left on terrible terms with, Marsha, an old boss and friend, sent me a book I’ll keep forever and we once again became friends. That my mom, who I haven’t always had a great relationship with, sat with me on my worst days. That Mindy, my brother, Brett and Mark, and Vicki all came out to do nothing else but take care of me. That my brother and his wife stayed with me for a week and saved my life with stem cells the first time. And now to get to where he gets to fight with these new cells to help save my life again.  There are too many… too many times that my heart felt a tickle of complete fullness.

The things I appreciate now, are not all that different from what I appreciated before. The thing I miss most is the ability to help others. I’m just in no state.  We threw a birthday party for Justin and I had to take a nap halfway through. I can’t wait to get out of this room so that I can get to a little bit more normalcy. If someone would’ve asked me if I’d ever need to use Long Term Disability, my answer would’ve been no. And now here I am, unable to work full time after a literal dead stop at the grind to find out my life had to change… for a little while.

My day ended with my acupressurist Rachel Rose, who came to me here at the hospital. I was barely able to get out of bed all day. Every inch of my body hurt. And now, I’m going to bed without my nighttime dose of Dilaudid because I don’t hurt and because she was willing to come to me, listen to my pain and help me in her way.  And help me to continue to open my heart with vulnerability and hope.

There’s so much more to come… I’m just a little bit ahead of my body.

 

 

 

 

 

 

 

 

Day +12 : (ANC 60)

Day +12 : (ANC 60) If you’re thinking what I’m thinking, “WHY ISNT MY ANC COMING UP!?” We have no idea…  But the doctors don’t seem worried. They usually let people out that have 500+ ANC for three days and no fever.  But, they say they’re setting this little birdie free on Friday!

I can’t wait to go home. They make me very comfortable here, but there’s nothing like your own bed where people don’t check your vitals every three hours. And, I’ll be able totake a shower without a stranger walking in while I’m changing. And no one is measuring my urine output. 

They give you a therapist while you’re going through this… And while I tell my besties and Justin pretty much everything, I’ve always been a fan of therapy. It gives me an unbiased ear that has seen a thousand people go through this. They help me sort out the things I internalize. They’re a big reason that I can stay positive when everything seems overwhelming or hopeless. Nothing is too stupid to talk about and I learn something every time.

Hospitals can actually deny people transplants if they don’t feel that you can get through it with their current mental health state. I’ve seen someone get denied, and it takes away all hope. It’s so incredibly sad when someone can’t get around a decision like that. They die. It’s that simple.

Mental Health is just as important, if not more than physical help. I’ve had a lot of friends kill themselves over the past few years, and while I sit here fighting, I still think that the mental state that one must be in to make that decision must be much more unbearable than this. 

Seeking counseling is a move of strength, not weakness. If you ever get to THAT point, reach out, find someone. There are loads of free clinics and people that do sliding scales. If you are reading and know one of these places, please post in the comments below.

My therapist sent me this when she got back to her desk. It may mean something totally different to you than me, but I feel like I can’t wait to learn from the birds…  The free people walking around outside of this room.  And, something that I always preach…  That you just never know what other people are going through. And if for just one moment, we could see the world through someone else’s eyes, it would change the world. 

Days 0-11 as told on Facebook

I know that many of my friends don’t have Facebook and the way that you get your updates is here. My apologies!  I do my best to copy everything over, but sometimes, I’m just too damn tired.

And, it’s good news that I’m tired. It means this stuff is working.

If you’re looking to give in some way, send a card and/or make me smile, there’s a ton of options.

I made an Amazon List which gets pretty funny depending on how much Dilaudid I’ve had to take to manage the pain. I assure you that this is monitored by the nurses and doctors. It’s just that I’m a huge lightweight. It also makes me talk in my sleep which makes the nurses happy. That’s why I’m here. To make the nurses happy. Anyhow, the link to my wishlist is here…  Disclaimer: Most of this stuff is “Wants” not “Needs”. PM me for the Address.

Heather’s Amazon Leukemia Wish List (Wants not needs… )

Or, through GoFundMe that Andrew Orvedahl graciously set up. It’s helping to get me a clean place to stay in Seattle for the month of October when I’ll be going through a groundbreaking clinical trial. I’ll still be without an immune system:

Go Fund Me: Snow in Seattle

Or, just to help me with whatever costs come up, I’m now on Long Term Disability… which takes a while to get paid for, so things are pretty tight.

Heather Snow’s Leukemia Fund

And now for a timeline so far…  Days 0-100

Day 0: Today we said goodbye to my neck and hello to the new stem cells and then slowly hello to my new neck again. Radiation is a fucking bitch. My face swelled so that there was no more neck. Just face and chest. We forged on with the transplant… And it wasn’t all balloons and cheers like with my brother’s cells, but it was special all the same.

Day 0. Tomorrow is 1.

On Day 1, my face was so swollen, I didn’t want to talk about it.

Day 2… Mom does water colors while I put in a few hours of work as I’m on part time Long Term Disability. I could go full on LTD, but I like my job and like my brain and feel like if I don’t continue to work, my brain won’t be up to snuff when it’s time to go back to work and I won’t know how to do my job. Also, my face is just about back to normal size.

Waiting for my cell counts to drop, and then come back and then I get to go home. Grateful for the ever so patient nurses when I have moments where my face and swell like a balloon and they put up with my bullshit. @blazing_a_new_trail @the_lifeofryan

Day 3 : Running out of wall space in here! See if you can find your face… My face is back to normal size.

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Day +4 – Walked a mile today by walking laps in the hallway. My legs were on fire, but I made it! Justin acts like my coach and yells at me to walk faster and touch the walls so that I finish the laps. He always thinks I can make it just a little bit further… I’m glad to have people that aren’t afraid to nudge. My doc asked me this morning how many miles I walked. I said “zero” and he said, “multiply that by one today.” And I said, “Done!” And we all laughed and laughed and questioned his IQ.

 

Day +5 : I just woke up. (6:00PM)

I’m so sleepy, y’all!

 

Day + 6 : Continue to be humbled by generosity. My buddy decided to donate his 8% maintenance fee for our NFL Suicide league to me and my cancer expenses!

If you’re interested in doing the least possible amount of work, but enjoy participating in fantasy football, hit up Anthony Bullano, ajb241@hotmail.com. A few years ago, I came in 2nd and won $600.

Day 7 : ANC 60. (Normal is 2,500)

Dad (Gregg) rolls into town and lectures me on how expensive Seattle is… Which I’ve been learning as I look for a place to stay. My original estimate of $4000 was way off. It’s probably more like $7k.

I could stay in an apartment building donated to the hospital, but I’d have to find a cleaning lady, and I’d likely be living in a building with some pretty sick people. And I won’t have an immune system… And I don’t want to be sick anymore. The gist? I will probably end up in a hotel with a kitchen where they clean every day and I can get back to some sort of normalcy and enjoy Seattle from somewhere that’s not a hospital.

I assured him I would be fine because my amazing friend Andrew Orvedahl had a fundraiser and already collected most of the what I would need… He graciously matched $2000 and my heart skipped a beat. So thoughtful and giving, so I’m really at almost 5k to cover a safe, clean place for me to live for a month. It’s still open for donations, and I have no doubt that I’ll be okay thanks to the generosity of you all, especially Andrew. My dad is convinced that you are Jesus. And Justin is Jesus too.

Day + 8 : (ANC 70) Have been pretty sick. No fever, slept most of the day… In a lot of pain, so on a lot of pain medication. And now I’m on a lot of drugs and updating my Amazon wish list. PM me for an address. Believe it or not, I actually had a restraining order against someone a year ago, which is one of the many reasons I’m adverse to posting my address online.

Have never been good at asking people to leave when I’m about to be sick, and try to hold it in instead of telling people that I love and I miss and want to be around to give me some privacy. Or cancelling someone who’s coming including my Dad who just drove 1200 miles to see me. I don’t want to ever hurt anyone’s feelings. I had to do that today. Which sucked, but I’ll see them again tomorrow or soon. Just balled my eyeballs out to my nurse about it. I’ll talk to these wonderful friends daily because they don’t take it personally and totally understand. And Troy Baxley has had to pull over to let me throw up out of his car more than once. They wouldn’t want me to be polite.

Thanks to all that have sent me things from my Amazon list… It’s keeping me from ordering several cases of salt and vinegar chips to come home to, which I donated to LHS for their team and volunteers.

People don’t realize until they’re going through this how important a support system is and how hard it is on Caregivers. That’s why I have things for Justin on my list. He’s sacrificed more than he’ll ever admit to.

Just received some darts and a f*ck cancer coloring book from my old boss and now friend, Ellis. Thanks,buddy. Justin and I feel the love.

Day +9 : (ANC 70) Sleepy. My Dad is sitting next to me… He drove from Sandusky so that he could bring his dog, Jack. My best bud Emily is also at my side and we’re trying to figure out my 100 days post transplant where I’m never supposed to be alone.

The last round of 100 days worked, but likely to the detriment of my health and mental stability. Round 2 of the 100 days is going to look a lot different and then we’re going to write a book about it. I’ve ordered an Apple Watch so that my caregivers know where I am at all times. It has lots of health features including one that sends an alert when I fall. It will also sync with a blood pressure monitor. And we’re brainstorming how to make this easier for everyone and keep me as healthy as possible and not be such a burden on my friends.

Question?
What would you do if you were unmarried, had a bone marrow transplant, lived thousands of miles away from your parents and had to stay within 30 minutes of the hospital where you had the transplant and you’re not allowed to be alone for 100 days? I’ve been very lucky because of all of you, but the 100 days of not being alone in a 750sq ft apartment was probably one of the hardest things in this whole debacle. Everyone needs moments to themselves. It was hard. Really hard.

Day + 10 (ANC 97) Got an amazing massage from Abby and I’m in a bit less pain today. My dad threw up, but I didn’t! So he couldn’t come to visit just in case… Now thinking that trusting my mom’s leftovers from two weeks ago may have been a mistake.

Word is, so long as my new blood cells don’t attack me and/or a nasty virus doesn’t get me in the next few days, I’ll be heading home next week! I’ll be mostly in isolation at Justin’s house because I won’t have an immune system again.

Yaaaay! So, if you’re planning on sending anything my way, I’ll be at the hospital three times a week, so you can send it to:

Heather Snow
c/o CBCI
1721 E 19th Ave #200,
Denver, CO 80218

Or PM me for my address. And thanks so much for all of your Amazon gifts. I’ve been smiling my ass off. Smiles must help grow bone marrow!

 

Day + 11: (ANC 70) Had a well paced day of friends and ice cream. Cried a little for no reason. Must go for a walk tomorrow as I’ve been in too much pain to do much of anything. Strategy will be Ativan and Dilaudid wait 20 mins for it to kick in and a long walk.

Got a book on Justin’s doorstep from someone named Jordan… Asked two Jordans of the Jordans I know and it wasn’t them. Mystery Jordan. Thank you, mystery Jordan.

Added colorful wigs to my wishlist because I’m in the weird in between stage of growing my hair and think it might be fun to pretend I’m a comic book character.

The thing about the pain… It’s a good sign. I have it in my longest bones (which of course are my lanky ass legs). It’s a sign of marrow grafting to my bones. So, we want that pain… And growing bone marrow is exhausting, so of course I’m tired. But not too tired to shop for ridiculous wigs!!

Also finished watching Stranger Things with Sarah… And now I’m going to have to watch a Disney movie so that I don’t have nightmares. Goodnight, and pray for my counts to come up so that I can come home.

WIGS!

Day + 12 (ANC 60) although my absolute Nutrofil Count is bobbling, I believe that it’s going to come up fast in the next few days. Why so important, you ask? I have to have an ANC over 500 for three days before they’ll let me go home. Where I still have all of the same risks, but I get to sleep in the same bed as my boyfriend, and see my pets, and smell fresh air. I haven’t left this floor since Sept. 27th.

So, that’s why I’m over this shit… This is my fourth time spending near a month in the hospital. I’ve had a few stints of one week visits, but these long stays are tough! The good news is that I’m sleeping a ton, which normally doesn’t happen in the hospital, but since I’m a regular, they make some exceptions.

I’ve been with my boyfriend for a year and a half and I’ve spent 120+ days in this room. I so appreciate all of the love that you all and others have shown me for whatever reason. I want to get back to giving my time to others, having fun outside of my illness and not letting Leukemia define me. I’m looking forward to no longer being so dependent on everyone around me and back to being the person people depend on. Justin deserves the healthy girlfriend, and I want to be the healthy sister, daughter and friend I was before. I can’t wait… So, maybe I’m impatient, but I’m also grateful. So many things have been lucky in my way. Including the generosity of others and luck with chromosomes.

Sure, I’m me. But, I’m the best “me” when I’m free to roam around.

Really looking forward to Seattle and thinking that it’ll be all of October give or take a week or two. There are a lot of guidelines around the clinical trial which I have to meet with my blood counts and and infections before I can go. Seattle is a bit more expensive than I originally thought, but thanks to this, it’s going to be a lot easier.

 

 

 

 

 

 

Migraines, Pain Killers and Chemo

Just a little update on what’s happening here in Snow’s Cancer land…

This last Wednesday, I had a new Trifusion Catheter put into the right side of my chest. This procedure is very painful and it took a couple of nights of a lot of painkillers to get through it. It’s entirely possible that I am a wimp… I was sleeping with a bag of ice on it and last time I got one, it took 4 days for the pain to go away. Other people get these and have no problem at all… I’m not one of those people, apparently.

Same day, they started my 7 days of Fludarabine, a less powerful chemo than the last bone marrow transplant, but enough to prepare my body to accept the donor cells. On Monday, I’ll get Total Body Irradiation and then the donor cells. Woot! Transplant Complete.

Then, I enter into ANOTHER 100 days of isolation where I have to be supervised at all times. If you’re interested in helping me out by sitting with me and doing a couple of chores or giving me a ride to the clinic occasionally during those 100 days, please contact me or Emily Chaney and we’ll describe what it’s like.

Somewhere in the range of 40-80 days after I get my cells, I’ll be heading to Seattle to participate in a clinical trial to hopefully guarantee that I will not relapse (of course there i never a guarantee, but this study is pretty awesome.)  If you want to look at the details of the study, It’s at Fred Hutch in Seattle and it’s detailed information is here.

Wanna help, or just provide entertainment?

Caregivers are needed… We’ll probably have two people come at a time and sit with me and drive me to the hospital if I exhibit signs of infection or delirium. If you have my phone number, you qualify.  Only good friends need apply. 

Moving to Seattle for a month costs money. To Contribute, my friend and hilarious comedian and writer, Andrew Orvedahl not only started a fundraiser to cover the costs of my say in Seattle, but matched $2000 of it with his own cash. My friends don’t suck and this guy is super generous and amazing. I’m so incredibly grateful to everyone that pitched in and to Andrew for his efforts.

To help with the costs of my trip to Seattle for the innovative clinical study that will hopefully provide her and many others with long lives despite a high risk form of Leukemia,

 Donate at Snow in Seattle  (https://www.gofundme.com/snowinseattle)

I’ve been unable to work full time for almost 9 months. Luckily, my company is amazing and provides short term disability for descending periods of 100% salary, 60% salary and now 50% salary.  Luckily I’ve been able to supplement this with PTO (vacation time) that I didn’t use and my coworkers have been able to donate. Also, Comedy Works has been collecting buckets after the shows and have been incredibly generous as well.

Go see the incredible comedians at the best venue in the country and support the club that has provided so much love and support to me. Their schedule is at https://www.comedyworks.com/shows/calendar

Finally, I’ve been staying in the hospital for another 30 days (my 4th time of 30 days) where I’m not allowed to leave the floor and section of the hospital. This can drive even the most creative people insane. But, I’m doing alright. Luckily the staff at PSL has an exceptional sense of humor.   But, heavy medication and boredom will strike. One of the 30 day periods, I came home to two cases of salt and vinegar chips that I ordered online while I was heavily medicated on pain killers. I’m surprised that I didn’t find a puppy there. Luckily, I found the salt and vinegar chips a home. I’ve also received a lot of great gifts during my hospital stays, many of which I had to give away or passed along to friends because I didn’t need them and didn’t want anything to go to waste.

I can’t get flowers because I once again have no immunity… and I can’t have very many visitors because I’m so at risk of getting sick.  So, I’ve made a wish list while I’m sitting here (it’s really a work in progress) on Amazon of silly things and important things that come to mind while I’m often in pain, often sick, and often bored.

Should you want to send me an uplifting card, picture for my walls, or something from my amazon wish list (https://amzn.com/w/2ZKPH15ZEJ4MX), you can send them to:

Heather Snow
c/o Presbyterian St Lukes
BMT Floor/CBCI
1719 E 19th Ave
Denver, CO 80218

You also have permission to just laugh at the list… it’s everything from gift cards to banjos. A girl can dream.

Thank you all for your love and support. Please keep me in your thoughts and prayers. I’m not out of the woods yet.

Love,

Heather Snow

 

Hope at Hutch in Seattle

We have a plan, and we were waiting to post until we were sure…

Next week, I head back to PSL to get my second bone marrow transplant. It was important to me to stay in Denver for transplant because of my wonderful support network here.  Same drill…  I’ll again be taken down to zero on my absolute nutrofil count, making my immune system total shit and able to catch any cold or bug that crosses my path. So, I’ll be there for another 30 days-ish starting the July 25th. You can send anything to:

Heather Snow
c/o Presbyterian St Lukes
Bone Marrow Transplant Floor
1719 E 19th Ave
Denver, CO 80218

And in big new news, I’m headed to Seattle tomorrow, for the day, with Justin and Emily, the two people who held my hand on my first trip to the ER to officially sign up for a clinical trial at Fred Hutch. Pending a few more tests (if my veins allow… They may have to go to my toes.), and hoping for a continued relapse status and minimal GVHD after my transplant next week. Hoping that we keep moving forward to a positive outcome. 

What is this clinical trial? Around 40 days after my transplant, the plan is to head up to Fred Hutch for two to three weeks to get a fresh batch of genetically modified donor cells. This should be sometime in September. We jumped through so many hoops to get accepted, that we’ve kept it on the down low just in case it didn’t work out. We had to have all of the right blood markers for me and the donor, get the anonymous donor’s acceptance, in addition to maintaining continued relapse and getting an extra biopsy (which we’re waiting for results on.)

The idea is that they take a batch of T-Cells from the donor and modify them to attack residual leukemia cells. Of the twelve people that have done this in similar circumstances, all are still in remission. Thanks to a nurse navigator from LLS.org and Justin for tracking down every possible clinical study to give me the best possible chances of staying alive.  

Don’t worry about us getting sick, we’re borrowing a plane again from another incredibly generous individual. The love and light that I have felt this year from everyone is going to carry me through this. I just know it. Transplant #2 begins next week. 

If you’re looking for ways to help…

Go see a comedy show at Comedy Works… Laugh and clap.

Email me gift cards so I can send my caregivers with money for stuff… Whole Foods, Sprouts, Trader Joes, Safeway, Walgreens, Starbucks, whatever else you may think we’d enjoy. 

Venmo me… (Whether I owe you money or you owe me.)

Give blood or platelets wherever you are. FYI, You have to make an appointment at Presbyterian St. Lukes. 

Sign up for the list @ deletebloodcancer.org

Hug a stranger.

Volunteer or donate to Dear Jack Foundation or Love Hope Strength

Buy tickets to High Plains Comedy Festival.  A little birdy says I may show up there. And, even if I don’t, it’s going to be an amazing bunch of shows. 

#fuckcancer #lovePrevails over #leukemia