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.

 

 

 

 

 

 

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