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?)