It has been a whirlwind of a few days - as much as that's possible in this quasi-quarantine life of ours. Raj and I spent a few days at Jim & Sherry's (aka the parents) over the weekend, proving a nice easing in and easing out of a very emotional day as celebrated my brothers birthday on February 7th (the 2nd time without him here with us).
The 2-night overnight stay at my parents house marked the first nights away from Chateau Paradiso since we arrived in Wisconsin in mid-November. I'm sure that's the longest consecutive period I've slept in any one place (probably since my last bone marrow transplant!). The change of scenery was needed and appreciated.
HEALTH UPDATE:
This diabetes thing is NO JOKE! On the scale of nothing to something, it's definitely hovering in the something direction, but I think it will all become pretty routine as soon as the whole insulin dosage and timing thing gets figured out. Had my first insulin shot last yesterday, and it will take a little time to get everything working properly - and also figuring out what diet modifications to make. It still remains a complete mystery how this happened, but that's kind of inline with almost everything that's every happened to me from a medical perspective.
My white blood cell count continue to be on the rise, which is EXCELLENT, breaking 820 yesterday, and platelets seems to be improving as well. Still on track from a return to DC sometime early to Mid March...TBD whether I'll need to drive back or will get to actually get on a place (I'm guessing it will be driving to reduce exposure to germs and ensure there's a fun 12.5 car adventure to end this epic recovery period).
Today I received an email from the Bone Marrow Transplant coordinator here in Milwaukee starting to make arrangements to set up discussions with a new team of people to support my recovery in DC. This means I'll have 3 teams on my case...The folks as MSK in NYC, the amazing team and Froedtert, and now a new team at Johns Hopkins/Sibley. The more the merrier I suppose. The important element here, is they must actually believe I'm going back to DC if we are starting to make intros to new doctors!
I need a new piece of Jewelry. Yes this belongs the health update section. I need a medical alert bracelet STAT. Now, truthfully I should have had one for decades given all my medical fun, but the diabetes situation has added some urgency. I LOVE jewelry, so this is a silver lining. Any good recommendations for some really stylish ones you've seen? :)
What's Entertaining US:
The Oscar nominations came out this week, and I can say that I've never been this far in my quest to see all Oscar-nominated films before the oscars themselves. Just a few documentaries and the Shorts and I'll be good to go! I'll be sharing my predictions here in the coming weeks.
The Daily Dose - We found this juice place that seems like it belongs more in our neighborhood in Washington, DC than here in rural Wisconsin - but we are LOVING IT!!!
All things BEN. I've looked look through thousands of photos of Ben in these past few days...remembering the millions of happy memories we shared throughout his 37 years. I especially enjoyed watching videos of him and hearing his voice and his laugh, and listening to Ben's podcast as we drove all over Milwaukee on Monday eating all of Ben's favorite foods celebrating his birthday. I thought some of you not on Facebook might appreciate reading this post I shared on his birthday - I miss that guy so damn much.
Post from Facebook:
Dear Ben Tolkan
It's 12:01AM on February 7th - HAPPY BIRTHDAY LITTLE BROTHER!!!! Just like every year, I want to be the VERY first person to wish you a Happy Birthday. Today you should be turning 39 years old, but you are forever 37.
I am having a hard time processing that this is already the 2nd time we must celebrate your birthday without you here. Some days it feels like you’ve been gone so long, and other days I feel like we were debating where to go for dinner just yesterday. I dream about you all the time, sometimes you’re laughing at me, sometimes you’re yelling at me, lots of times I think for a split second that you’re still with us…
One thing is certain, there isn’t a day that goes by (or for that matter a moment) where you’re not present. We all talk about you ALL the time, to people you knew, and people you never met. As you know- you’re a fuckin’ legend, but you were already a living legend - and I sure as hell wish you still were a LIVING legend.
Let me tell you one thing. Mr. Ben - this grief journey is pretty damn brutal. Now I know that you are/were the toughest of the tough with just about everything life could throw at a person, but navigating losing your favorite person on the planet is kind of worse that anything I’ve ever endured. I blame you - I blame the fact that we were the best pair of siblings the world ever knew, and that’s why this is so hard. AND I blame CANCER for having the audacity to get in the way of what should have been at least 5 more decades of life we should have had to live together as brother and sister.
I just miss you like crazy, and it doesn’t seem to matter whether its a happy moment, or a sad moment, or a monumental moment - I miss you just the same - SO SO SO MUCH, cause moments aren’t the same not that I don’t get to share them with you.
1. I got engaged in November (Raj and I screamed from the top of our lungs in Rock Creek Park moments after I said, “I DO,” we yelled “BENNNNNNNN… We’re ENGAGED” could you hear us?
2. The Packers blew it in the playoffs, Dad was a typical deeply pessimistic sports fan from the first kick-off, despite the Packers dominance for most of the game - I missed making fun of Dad with you. (Side note: every time the Packers made a good play, your friends and I texted and attribute that to your divine intervention.”
3. I’m 77 days into Bone Marrow Transplant #3 and the number of times I wanted to call you are too many to count! I play out in my head what you would say, how you’d be the voice of reason, you’d lighten the mood, you’d remind me that we’ve been through this before, that it will all be OKAY…but guessing what you’d say just isn’t the same as having you here. I'm going to be okay btw, I'm healing, and it seems to have worked. Its because of you - that I won't dare take any of this for granted, not even for a second.
4. I moved out of the DUMBO apartment where we spent the last months of your life..., and I moved back to DC and in with Raj. I live in DC, but you’re not there, and that means that DC hardly makes sense…(Now I’ve been in Wisconsin recovering since Thanksgiving), but when I return how will I know where to eat or drink? Will it even be worth walking down 14th street knowing I won’t run into you? I live in Mt Pleasant, and I walk past the places you called home in your favorite DC neighborhood and want to believe you’d approve of this new DC chapter, even though I only know this city with you living in it.
5. Michael and Ian got married and it was the best wedding I’ve ever been to - you would have loved it, you should have been there dancing up a storm and partying the night away, and you certainly were there in spirit.
6. Its almost the 1 year anniversary of Chateau Paradiso (the lake house I bought last February, that we named after Pizzeria Paradiso in tribute to YOU!). Its a dream spot, and I will never quite get over the fact that you’ll never be there to play in the lake or get drunk on the deck, or to celebrate another holiday. It’s been a wonderful place to recover and hideout from this pandemic that will never end, and to let the new bone marrow kick in. There’s an AMAZING neon ORANGE sign hanging in the living room that says “Living the Dream,” designed by Michael Kravit. It lights up the whole house, and in doing so, your awesomeness fills the house the best It can without you being physically with us.
7. Your wife, OMG, Abby Tolkan is one hell of an amazing woman, which of course you knew from the day you met her - but her strength, her poise, her friendship and support, her ongoing engagement with all of us...She's one amazing sister-in-law, and her awesomeness makes me miss you lots, and also leaves me so thankful to know you had the VERY best partner in her! So much Raj and I can learn from the two of you!
I love you. I miss you. I will celebrate the hell out of you all day today and for the rest of your life. Mom, Dad, and I are going to eat all your favorite foods from all your favorite Milwaukee spots today, we’re going to ugly cry, and we’re going to laugh, and we are going to continue to look at each other and wonder how it will ever make sense without you - IT WON’T! We’ll go to the cemetery and put rocks on your headstone and wonder how it’s possible we buried you there 16 months ago already. We will be angry at CANCER and at a world that lets people we love leave us way too soon. We will listen to ZOOM sing you happy birthday from the moon, and we’ll replay your moving podcast, and we will look through the endless photos are your adorable face.
I LOVE YOU MORE THAN EVER, MISS YOU MORE THAN EVER, HAPPY BIRTHDAY BABY BRO!!!!!!!!!!!!!!!!! #fuckcancer #mybroisthebest #happybirthdaybentolkan
Love Always & Forever and Forever, Jess happybirthdayben.org/39
Ben gave us all so much in his 37 years - and he should and will be celebrated forever. Here are some ways to celebrate, remember, and honor Ben today, and please share it with the world! Use #Happybirthdaybentolkan
1. Make a well-done Tombstone Pepperoni Pizza 2. Buy yourself a very cool pair of new NIKES, or at least spend hours debating whether to buy a pair as Ben would have done… 3. Share a favorite memory or photo of Ben - 16 months have passed since we lost our guy, and its hard to realize there will never be new memories or photos to see..Let's help each other keep that beautiful face in our memories. #Happybirthdaybentolkan 4. Call your sibling, tell them how much you love them, make plans to hang out with them, and squeeze them tight. 5. Have a glass of bourbon 6. Drink a beer 7. Consider donating $39.00 in honor of Ben’s 39th Birthday to CURE EWINGS SARCOMA! happybirthdayben.org/39
Here are some pictures and the itinerary from Ben Curbside Food Tour around Milwaukee...
What I’m grateful for:
Being Ben's Sister
The strength and humility and confusion and ability to grapple with the very hard reality of being the one to survive cancer, when my brother didn’t have that same chance
These amazing guys pictured below...The boys he grew up with, who have grown up to become such amazing guys - and who I feel so lucky to have in my life now, and will keep close forever. So thankful to have been able to remember Ben with them on Monday evening.
Quite the day and you got Ben a goody box! Well done.