Mary

Whelp, this sucks!

This is wrong.

This isn’t fair.

This cannot be real.

How could it possibly be real?  What the fuck kind of reality would that be – a reality sans the strongest, bravest, funniest, badass…iest (look it up), most beautiful inside and out person on the planet?  Surely if there is a person worth saving, that’s the one.  Right?  That’s the person who is meant to be here, to show us all that it can be done: you can be given insurmountable odds and not only overcome them but do so with two mighty middle fingers held high in the air, laughing as what was supposed to be your fate disappears beyond the horizon behind you.

And yet here I am, typing Mary’s final blog post for her.  Sucks BALLLLS.  I would do just about anything to be going about my merry life knowing that down the road, my cousin and best friend in the world is typing up her latest raw, venomous, hilarious blog post, inspiring thousands upon thousands of people doing what she has been for the last three and a half years: kicking cancer’s ass in.  Just about anything.  But that’s not how this world works, is it?  Nothing we can do.  Not much to say either, except…

This sucks.

Before I go any further, please allow me to bring you up to speed on the medical details in the two and a half weeks since Mary’s last blog post on February 25.  On Monday the 29th Mary went in to get the liver biopsy. She was admitted to Seidman, received lots of fluids, platelets, and drugs, and was feeling ok.  On Tuesday afternoon, she received the news from Dr. Caimi that the cancer was present throughout her liver, not in tumors but in free-floating cells, and the chemo was making her too sick to continue.  Over the next two days she met with palliative care doctors, radiation doctors, and hospice.  Her goal was to be home with Mack and Derek and to be comfortable.  She was able to go home Thursday afternoon armed with lots of pain meds and a plan to start radiation the following week, the hope being that it would help enough to give her some clearer days.

She spent Friday and Saturday with her family, and she got to see and talk to a lot of her friends. She was tired and confused some of the time, but she still had her trademark sense of humor and strength and was able to enjoy that time at home.  Sunday through Wednesday, Mary was comfortable, mostly sleeping, and pretty out of it when she was awake.  She was able to walk and talk and eat, but she tired easily and was very confused.

Thursday morning brought a drastic decline in her condition, and hospice believed she only had a few more days at best.  From that moment on, Mary was surrounded by family and friends 24 hours a day.  The hospice nurse stopped by regularly, and her medications were adjusted to keep her comfortable.  The incredible support system that has been with the Buell family from day one made sure everything was taken care of.

On Sunday morning, just before 8:00 a.m., she passed away, peacefully, with her husband by her side.

*deep breath* (Keep it together; you can do this…)

FFFFFFUUUUUUUUUUUCCCCCCKKKKKKKK!!!!!!!!!!!!!!!

(Nice job, dumbass,)

The day after she stopped treatment, Mary went to the bathroom – you know, like you do when you have to go to the bathroom.  When she came out, she said she wasn’t sure why she thought of this in the bathroom, but there were two things that came to her that she was really struggling with.  The first was that she wasn’t going to get to see Mack graduate Pre-K.  This was her near term goal, and it was out of reach.  The second was that Christmas 2015 was their last Christmas as a family, and she hated that she was sick and in the hospital.  My only response was, “This sucks,” because it did, and there really wasn’t anything else.  She responded, “I am glad you are here, because you will say that it sucks.”  And it does suck.  That’s it; it sucks.  There’s nothing that makes it any easier.  It sucks.  (She then reminded me that these were her thoughts while dropping a deuce, and the tears quickly turned into laughter.)

So, what to say now?  If nothing anyone can say makes it any easier, then what are we supposed to do with all these words?  Words can’t bring her back.  Words aren’t going to make Derek or Mack feel whole again.  Words can’t heal the unimaginable heartbreak that her parents John and Sue feel.  Words won’t neutralize her sister Jeanne’s anguish, a feeling only a big sister who has lost her little sister far too early can know.  Words can’t fix this.

Then why am I typing?  Yes, I’m typing because Mary asked me to.  But why else?  I think the answer lies in the heading at the top of this blog: “MY WAY OF DEALING.”  Mary wasn’t blogging because she thought it would fix the problem.  She was blogging to help herself deal with the problem.  And she did so in the only way she knew how: uninhibited, void of filters or shame, unrefined in the best way possible, and with a level of strength, bravery, and humor that made a lot of us wonder if she was indeed actually a real human being.  So maybe, just maybe, words can help us deal as they helped her.

By the way, let’s get one damn thing straight here: she was indeed actually a real human being.  Through all of this, she was herself.  She wasn’t strong and brave because this was thrown at her.  She’s always been brave and strong.  And stubborn, too.  She’s been stubborn as shit for as long as I’ve known her, and she was so all the way through the end.  She wasn’t going to let go unless it was on her own terms, taking everything as a challenge and determined to prove you wrong.  To be honest, that’s probably why she stuck around as long as she did.  There were a couple times when she was given some pretty bleak prognoses and could have given up her fight.  But she just said, “Nope!  Not ready,” lowered her shoulder, and barreled through another wall.  Sometimes, though, there’s only so much an actual real human being can do.

I really didn’t want to use this blog post to recap Mary’s journey (DRINK!) though.  There’s plenty of that in her previous posts.  And if you haven’t read all of them, you stop reading this sentence right now, navigate yourself to her January 4, 2013 post, and you don’t stop reading until you’ve gotten yourself back here.  What are you, some kind of sicko who reads the last page of a book first like Harry Burns from When Harry Met Sally?  Speaking of which, have you seen any recent pictures of Meg Ryan?  She looks like Joan Rivers… as in like Joan Rivers NOW.  It’s sad.  Anyway…

Mary was so much more than the last three and a half years of her life.  To those of you who knew her for longer than that, you probably could have surmised that if anyone could have dealt with the circumstances she endured in the manner in which she did, it was her.  She had always been amazing.  Her ability to reach out, touch, and inspire people didn’t start with her diagnosis.  Mary was always there when you needed her, with a card ready if necessary… usually one with a really good joke inside.  She loved taking care of people and knew exactly what everyone needed.

When Mary was a student at JCU, and I was just starting my freshman year, without hesitation, she immediately introduced me to all of her friends, made sure to include me at mealtimes and parties and campus events.  There wasn’t a single day I felt alone or homesick, and she was the number one reason for that.  I will never forget her getting up at the crack of dawn, still drunk from celebrating her 21st birthday, to come to church and be my confirmation sponsor. She may have left three times to vomit, but she was there.  And she was the best sponsor I could ask for.  On more than one occasion, Mary helped me deal with heartbreak.  Shitty thing is now my heart is more broken than ever, and she’s not here to make me mix CDs, send me cards and junk food, make fart jokes, and just be Mary.  SUCKS BIG, HAIRY, FREAKIN’ MAMMOTH BALLS!!!

Things I will forever miss doing with her: singing everything in four-part harmony; keyboard duets; choreography; rapping; yelling over her voice while trying to explain the rules to a new board game (though I’m sure everyone else will still talk during the explanation); making fun of younger versions of ourselves; campfires; drinking wine, drinking margaritas, drinking; picking out little gifts to give her that I know she’ll think are funny; making wildly inappropriate jokes; sarcasm; her hilarious phone calls and silly texts; flip cup; making crazy faces; making crazy home movies; being a total weirdo; eating her delicious food; play dates with our kids and how sincere she was with mine; hugging – Mary gave the best freaking hugs; watching The Bachelor; Mondays; Fake Family Reunions… honestly, I could keep going for a good ten pages, so I’ll stop here.

Speaking of the Fake Family, if you never heard her or me or any of us talk about the incomparable relationships that all of the members of our Fake Family have with each other, I’ll spare you the story of its inception, but just know that we are a group of incredibly, immensely, intimately bound friends whom we consider family, just as much as any of our own respective blood-related families.  To call Mary “cousin” or “friend” is completely inadequate to describe our relationship.  “Sister” feels closer, but there isn’t (or wasn’t) a word for what she was to me. Maybe “fuzzin,” a marriage of the words “fake” and “cousin,” was born out of the need for a word that couldn’t be found in any dictionary – that could capture all the things we were to each other.  (Side note) And although this blog post is written in the first person singular, just know that this is the voice of all of the fuzzins, collectively, as one.  Any one of us could have said exactly what you are reading right now.  We all loved her as much if not more than any of our natural family members, and the word “fake” does an absolute disservice to our relationship.

But this isn’t about me.  This is about Mary and who she was.  And that’s why we need to talk about Mack & Derek:

More than anything, Mary wanted to be a wife and a mother.  Derek was the best thing that ever happened to her.  They fell in love quickly and fiercely.  They were best friends and true partners.  When Mack was born, Mary was complete.  Mack was Mary’s heart and soul.  He’s so much like her – scarily so – and knowing that I will get to watch him grow up is a privilege I do not take for granted.  It means I will have a piece of Mary with me always, and it also feels so gut-wrenching and completely fucking unfair because she’s not here to watch him grow, too.  But Mack will never not know who his Mommy was because he is surrounded by people who loved her.  I am grateful for the extra three years I got with Mary – it feels like stolen time – but I am most grateful for the extra three years Mack and Derek got to spend with Mary.  And she with them.

So, to wrap up this festering, seeping, steaming turd burrito with a nice bow and somehow make it look pretty…

Some thank-yous.  To start thanking people is to forget someone. So many people love Mary and will forever have her in their hearts. With that being said, there are some groups she herself wanted to address.

Family and Friends—

To everyone who visited, called, texted, sent cards and letters, donated, and sent food, thank you.  Mary loved to entertain and be surrounded by the people she loved.  You all were and continue to be amazing.  Keep it coming!  Derek and Mack will always know that support system is not going anywhere.

Seidman Cancer Center Staff—

Many of you are covered in the friends and family because that is truly what you became.  From those that have been there from the beginning to those that were there to send her home comfortably, you are all incredible.  She fought with you, and your knowledge and kindness gave her the tools she needed to kick cancer’s ass for three and a half years.  Thank you.

Hospice of the Western Reserve Staff—

Because of you, Mary was able to be home and comfortable, and that is what she wanted. In the short time that you knew Mary, she was barely herself anymore.  Still you found a way to understand her, and you brought peace and comfort to her and the army of friends and family who were there with her in her last days.  Thank you.

Strangers—

This blog has amassed readers from all corners.  Many of you never got to meet Mary, but still you supported her with your thoughts, prayers, and lots of other good things.  Please know that she appreciated each and every one of you.  Thank you.

And from all of us, Mary—

The words it would take to thank you for everything you did in life haven’t been invented yet.  Attempting to do so would be futile.  Just thank you for being part of our lives.  We love you.  We’ll miss you.  We will live for you as you live through us.  Thank you.

We’ll see you on the other side.

LIVERS ARE DUMB.

I received my final results back from my doctor on Tuesday. Essentially the results were inconclusive. –which is something that we knew would likely happen, seeing as though the NIVO drug would show inflammation. The somewhat good news was that it didn’t look like there was any cancer outside of my liver, which is a huge sigh of relief. However, after radiologists and both my oncologists read the results, here are the scenarios they gave me:

1. either I have a bunch of new lymphoma growing in my liver, and the hemolysis or other weird liver condition is being masked by that, or…
2. the “stuff” shown in my liver are dead hemoglobin cells from the hemolysis,or some other autoimmune disease, which could be treatable/treatable.

Obviously only a treatable #2 would be the best case scenario, but we won’t know anything until I meet with the liver oncologist to schedule another needle biopsy of my liver–(we meet Friday for consult, so I’m guessing surgery will probably be early next week). My oncologist told me that every single thing they are doing now is a 100% guessing game. both my regular oncologist and BMT doc, can’t provide a prognosis of any kind, which to be honest, I’ve stopped asking for. I know my cancer and my liver have acted way different than its supposed to, and I know I have a 50/50 shot.

And for the first time, I’m not quite as afraid anymore. Ever since what I will dub “the incident”, I have been making small goals. Shorter goals. Goals I’d love to reach just within a month or so. Next up, my birthday. March 19th. But let’s just take it one day at a time.

In other news, I’m suffering from muscle atrophy and muscle wasting in my legs, which is making it pretty hard to walk. I feel really weak because I’m only 93 lbs. (but don’t worry I have been eating, and I am determined!) My trainer Bob has been awesome in helping me get my shit together.

And so yet again, I will have to keep you posted. Praying the results of my biopsy show a cureable scenario #2, but either way, I was happy to wake up this morning. Where some might hear “ooooh your chances are pretty limited”, I hear, “so you’re tellin me there’s a chance!” Dumb and Dumber is actually pretty deep.

A special thank you again for everyone who donated to the fundraiser for my family. We are opening a college fund for Mack, and an interest bearing savings account. I’m so lucky to have such an amazing support system. ❤️🙌🏻

 

BOOM! Made it Sucka!!!

WHOA. It’s been at least a month from my last update. I 100% blame the fact that I’m at the hospital 2 days per week for infusion, and the Internet there is too slow for my blog site, so I can’t type anything. I mean it couldn’t possibly be for my complete schleppy self, wearing Pjs all day (and sometimes the next. Ok. All the time)showering every 3 days (if I’m lucky and not too dizzy to take one), you know…..just overall being a schleppy mcschlepster.

First of all, I want to address the fundraiser. I was super surprised ( and very humbled) that the tickets sold out so quickly. Thank you so much for all of the support, along with The venue, auction baskets, money, decorations, door prizes, food/alcohol, et al. I know we can’t ever repay you, but we also just can’t thank you enough. For those of you who have sent gifts, money, meals, and gift cards, thank you SOOOOO much. Unfortunately I have not gotten around to sending thank you cards, and I have to be completely honest when I say that I’m not sure when I ever will. Hopefully you understand how overwhelming our lives are right now, and can forgive me! Also, I was asked to relay that space is pretty limited, so please utilize the coat check upon entry, and please do not reserve seats at tables. Seating is not assigned. Thanks! So far white cells are still doing ok, so I am really looking forward to seeing my friends and family together in one space 🙂

I was waiting to post a blog until I knew some definitive answers about things. Shockingly, I do not have those answers, but I’ll update with what I’ve got!

WARNING: THIS POST IS KIND OF DRAWN OUT, AND QUITE SCIENTIFIC-Y! READ WHEN YOU’RE TIRED IF YOU HAVE HAD TROUBLE SLEEPING.

The main problem is that my Billie Rubin (an enzyme found in the liver, which turns out to be pretty important), is super high. Normal range is 0.0-1.2. I’m at nearly 19. Here are some fun facts about Billie Rubin:

A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. 💩 It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal color.

Bilirubin circulates in the bloodstream in two forms:

Indirect (or unconjugated) bilirubin. This form of bilirubin does not dissolve in water (it is insoluble). Indirect bilirubin travels through the bloodstream to the liver, where it is changed into a soluble form (direct or conjugated).
Direct (or conjugated) bilirubin. Direct bilirubin dissolves in water (it is soluble) and is made by the liver from indirect bilirubin.
Total bilirubin and direct bilirubin levels are measured directly in the blood, whereas indirect bilirubin levels are derived from the total and direct bilirubin measurements.

When bilirubin levels are high, the skin and whites of the eyes may appear yellow (jaundice). Jaundice may be caused by liver disease (hepatitis), blood disorders (hemolytic anemia), or blockage of the tubes (bile ducts) that allow bile to pass from the liver to the small intestine.

*********************************************************************************

I am suffering from pretty severe jaundice. The whites of my eyes have Been yellow for a we while now, but obviously since my Billie is getting higher, they have been getting worse. TBH, it’s a pretty sexpot look. In addition, my nails have turned dark brown, and are starting to fall out (God, I can almost FEEL your jealousy!) My pee is the color of Coke, and my skin looks like a spray tan from the jersey Shore gone wrong.

Among all of this, I am exceptionally tired all the time, and my legs/feet are weak, unsteady, and bruise easily. But, nonetheless I have some good days where I have a boost of energy, am pretty productive for once, and am able to meet with my trainer, Bob. I can also clean the house, and can get out to buy groceries. Sounds pretty mundane to the average person, but it feels like such an accomplishment to me. Unfortunately, I’m completely tapped out after about 3 hours! Lame.

Regarding treatment, when I left you all last, we were still waiting to figure out if the NIVO drug was working or not. Because my Billie has continued to rise, they weren’t really sure….until one of my labs came back positive for hemolysis, and my doctor noticed a pattern in the timing that I needed a blood transfusion (getting some healthy blood, and being a total vampire), and my billierubin numbers going up. Put two and two together, and a new theory was born. As of now, the thought is that I have developed a condition where my toxic red cells are being killed too quickly for my liver to process out fast enough, causing them to build up in my system, thus causing my Billie numbers to increase. Which also means that the NIVO is working, since the donor’s immune system is producing so many healthy red cells to kill the bad ones! That’s great news! Bad news is that the NIVO is working! the NIVO is working so well, in fact, that it is what is causing the hemolythis! So the docs are working on figuring out a plan for this. Right now, they are going to lessen the amount of NIVO that I’m getting, and move up my PET scan to the 16th, which is next week. The scan will give a better picture as to what is going on exactly. I hope.

scary things: if the PET shows cancer elsewhere, there is no plan. At that point, it will likely be hospice. I have no prognosis at all, which is….good? I have no idea. I am almost numb to it all anymore.

I have been told I was going to die quite a few times now throughout this journey (DRINK!), and I’m kind of like, meh. Let me tell you something about me. If you tell me that I can’t do something, I will try my hardest to make you look like an asshole. You can take away my strength, my red blood cells, my internal organs….but sure as shit, you can’t take away my will to fight. So take that, dumb ass Doctor. You gave me 2 weeks to 2 months left to live, exactly 2 months ago. And I say, Boom! Made it Sucka!!!

Fundraiser

A lot of wonderful people over the past few years have helped us out so much. Monetary donations, benefits, fundraisers etc. 

You have no idea idea how much not worrying about paying the mortgage has meant to our family, Due to rising medical costs and time off of work. Everything will go to derek and Mack when I’m gone, which is one of the biggest worries I have right now. 

So, even more amazingly generous and wonderful people are throwing a fundraiser for us on Feb 6th. Please see flyer below. I hate to ask for anything, pretty much ever, but so many people have been working so hard on this, and it brings me to tears. A special shout out to my dear friend Kelly who started this whole thing, along with her whole family.   Also a special thank you to the Fornaro family. You are such selfless people. And everyone else who has donated time, services, food, raffle baskets etc. our hearts are full.

Finally thank you to Brittany Gidley. One of the most talented photographers I’ve ever met, who gave us a gift we can never repay her for. Memories.
Below is the ticket entry. Tickets must be purchased in advance. $50  per person and $95 per couple. Please contact Kelly for additional details:  klflesher@yahoo.com or 440-567-0976

*Please note: any reserved ticket must be purchased by Saturday the 9th of January.   
   

Current update

The past few weeks have been a whirlwind. But as you can see, still alive!!! 👍🏻 (has anyone seen the movie “the croods”? I was totally channeling the granny with that statement.)

I’ve been feeling like total shit. Mentally, completely out of it. Physically, I’m less than 100 lbs. I really need to gain weight. I’ve been so weak that it’s hard to walk. I am short of breath if I walk too much. 

Derek has been more than a caregiver for me. He forces me to eat, keeps track of all my meds, and makes sure I’m not alone. Even if I’m asleep, I hate being alone. He loves me so much and I love him for that. 

The somewhat good news is that my counts have slowly been getting a little better every day, and after getting some blood yesterday, I feel 1000% better. Still having labs drawn, fluids and magnesium twice weekly, and will have another round of the nivolimab drug on Monday. –which means that my counts will likely drop again, but you know….whatever it takes. 

It’s definitely easier to fight cancer when you’re feeling semi ok. I’ve made my goals a lot smaller now–make it to my birthday–see Mack graduate pre k. I mean hey, there’s always a chance I’ll live longer than everyone I know with my bionic body! But alas, there is certainly more of a chance that I won’t. I’m afraid of derek losing the house when I’m gone–another, (other than your own funeral), weird thing to discuss when you’re 33. I’m afraid of what happens next. 

My mind is going a million miles a minute every day. I feel overwhelmed all the time. But like I said before-still alive! So when you are sitting there, wondering how life could be so bad for you, please realize that it could always be worse. And as long as you are physically able to live, you always have a chance to turn things around. I would give anything for more time.

Mack-don’t forget-if you go to bed at night, and you aren’t proud of the person you were that day, you’ve done something wrong. Always be kind. Always be generous. Always be loyal. These are qualities of a good man.

Thank you to my employer for being amazing during this time. And thank you to everyone for all of your support. ❤️

Def wasn’t hoping to discuss this so soon.

I really wasn’t expecting to have to discuss this so soon, but it’s time.

last week I was admitted to the hospital due to liver and kidney failure. Essentially I was only given a few weeks/hospice left to live. Eventually, my kidney infection went away, and my white counts got a little better. After speaking with my regular oncologists, they believe there is still a chance that the nivolimab drug should work-although it takes 6-8 weeks to make that determination.

So im still fighting the good fight-not yet ready to go. I’m in pain, and I’ve had constant emotional battles with everything, to include finalizing my funeral details.

I don’t know where I’m headed or how long I have left on this earth. But I do know that I’m not ready just yet, and I want (need) more time with my husband and son.

Long sigh.

Still having random fevers, which is cool. Or hot. Whatever. It’s annoying, but worse than that is the pain. I finally saw pain management after putting it off for years, trying to be a tough guy. But after weeks without sleep, I had no other choice. They put me on a long acting pain medicine which has actually seemed to help a bit. It’s a start.

But here’s the best part. This whole time, as I typically do, I’ve been weighing out the pros and cons of my situation. One thing that was always tipping the scale in my favor was that I wasn’t going to lose my hair. Well as it turns out, 10% of people will lose their hair on this drug, and lucky me, I’m part of that 10%. I woke up the other day with hair on my pillow and bald patches on my head. I haven’t shaved it yet, but I will probably have to soon. I keep clogging the drain in the bathtub because so much hair falls out when I shower. *long sigh*. It would be nice to not look like I have cancer for one year at least! Cancer, you asshole.

in other news, thanksgiving was great. Made lots of food. Spent time with the in-laws. We put up our Christmas decorations, and I didn’t even have a panic attack! That’s one step  in the right direction I suppose!

i have some treatment and blood work on Tuesday, then have my second dose of brentuximab vendotin on the 1st. Will keep you updated! Thank you for all the thoughts and prayers this week!

Passed right out watching dancing with the stars!

Treatment

So here is a quick update. I received some really good news on Friday—my biopsy results came back showing a specific protein in my liver, which allows for more treatment options. Additionally, my insurance company approved the non FDA approved drugs, so I can finally start treatment! Specifically, Brentuximab vedotin. (Click here for info on this drug: https://en.wikipedia.org/wiki/Brentuximab_vedotin). There have been more successful trials using this drug with advanced stage disease than the Nivolumab drug

(click here for more info on this drug: https://en.wikipedia.org/wiki/Nivolumab)
-so my doctors wanted to start with this one. Memtally, I’m way more hopeful. In a perfect world, this drug could totally work for me, and I could just live the rest of my life having this drug every 3 weeks. I was set to have 2 rounds of this drug, then scan to see where we were at. After the scan, if the tumors were still there or they were worse, we would switch to the Nivolumab drug. Unfortunately, today’s lab visit put a kink in that plan…
 

My liver enzymes, which were close to normal on Friday when I received the drug, were all elevated today. No good. It doesn’t necessarily mean that the Brentuximab treatment isn’t working, just that it’s not working quickly enough. So, beginning this Thursday and Friday, I will be getting one chemo drug, cytrabine, (click here for more info on this drug: https://en.wikipedia.org/wiki/Cytarabine), with the hope that it will jumpstart the Brentuximab into working. This drug will weaken my immune system, so please stay away if you’re sick, friends and family!

 

even though I received some not-so-good news today, overall, I’m feeling hopeful for the first time since my relapse, and am in a much better state of mind now that at least there is a plan in place!

 

Special thank you to everyone for the kind words, dinners, cards etc. Additionally thank you a million times over for those of you who have donated money on our giveforward website. It takes a lot of the stress away for us. We so appreciate it. This time of the year sucks ass for us, but I think there will be some good things on the horizon!!

 

 

 

 

 

Found.

Status/post surgery has been fine. Still waiting for insurance approval. Physically, bone and liver pain, and mentally? Well mentally, I’ve never felt worse since this whole thing began in 2012. 

I feel lost lately. So so lost. I find myself wandering around the house, forgetting what to do next-suddenly getting pings of sheer terror, especially while Mack is at school and derek is at work. I start to freak out-like what if this is it? What if this is my last hour? I need to be with my family. I HAVE to be with my family. Sometimes it takes me hours to calm down. I feel crazy. I feel empty. I look at things-like a letter I sent-will this be the last letter I ever send? It’s silly. It really is. But I am really having a difficult time moving past it. I sneak into Mack’s bed at night, just so I can smell him. When Derek’s asleep, I kiss his head so many times, he should have a hole there. Neither of them know, but it’s something I need. I can’t stop crying. I’ve had great friends who have been sending over meals all week, and I cry when they leave, secretly thanking the world for good people, and secretly praying that Mack grows to be kind like that. That he gets a new mom one day who will teach him to be like that.

I don’t like to talk about dying. I try not to talk about it at all. I often try to hide how I feel from my friends and family, because it’s often more hurtful for me to see them uncomfortable. But sometimes-like this week-(which in large part comes from the fact that I’m just sitting here, growing cancer cells, not getting treatment which shakes me to the core, and is also partially because we ran out of “fall” air fresheners, so I switched to “winter” ones, and it’s bringing horrible flashbacks from our last winter spent in Houston, where I was given a death sentence)-I just need some time to gather my thoughts and get myself together.

This is a rare time where I’m actually discussing how I really feel about this. But for those of you who wonder-those who ask-this. This is what it feels like to have cancer. To not know. To question everything. And say what you will, but having faith in something? That is a hell of a lot harder when you actually need your faith to stay sane. When you’re closer than ever to needing to believe that there is something more for you. Theories are great. Testing them is the hard part. I wish there was something that someone could just say to help me believe and not be afraid. But there’s not. It’s something that I have to learn on my own. I have been wandering for a long time now, and I’m really just hoping to be found.

Ps Go Wolverines!

PSS-here is one thing about my son that I know Ive left him with…he will NEVER leave an empty roll of toilet paper in the bathroom ❤️

ADDENDUM: Ok so since I originally posted this blog, I feel I need to add an addendum!! Thank you so much for all of the caring words, but please know: 1) I’m not going to kill myself lol. 2) I’m not giving up…like…AT ALL. 3) part of the reason that I have the blog is because it’s therapy for me sometimes to write about how I’m feeling. I still have a hard time talking about any of this out loud or in person, so please please don’t take offense if I text or email rather than calling on the phone. At least until I’m able to collect my thoughts! 4) I am really not like this all of the time. 95% of the time, I am totally with it, and ready to beat this bullshit. But sometimes a gal just needs that 5% ton have a pity party!

Biopsy

Just a quick update…

This morning I began another long battle of cancer fighting, by having my liver biopsy. It was a litle painful even under light sedation, but luckily I knew what to expect, having to have one about 9 months ago. I’m sore and tired now, but that’s about it. Results won’t be received for about 2 weeks.

In the meantime, my doctors are trying to obtain approval by my insurance company, to begin taking a new drug on the market (and not yet FDA approved), called nivolumab. The first attempt for approval was denied, so my team sent letters and clinical research articles to try to get them to change their minds. They should have a response by early next week, so fingers crossed. 

I’ve been having tumor fevers again, along with bone and liver pain. I’m starting to actually feel sick again, and I hate it. That being said I’m very anxious to start treatment. The side effects of the new drug appear to be pretty minimal in comparison to the treatments I’ve had in the past, so I’m definitely ready to go.

Thank you to everyone, especially the West Geauga Schools and football team. There is really something to be said about the kindness and generosity of the people in our small town. Additionally, The dinners, phone calls, cards, help with child care, and “forget all your troubles and let’s get a pedicure day”, of family and friends, 

have really helped me to take my mind off of the worst time of my life. Also thank you for your understanding of not wanting to talk some days, return phone calls, or go anywhere. Emotionally speaking, some days are just better than others. 

I’m not ready to go yet. I know it’s just not my time. So bring on the battle. I’m ready to fight. Thanks for remaining in my corner ❤️

GO WOLVERINES!!!

Ps. Happy 4 year anniversary to the most amazing, supportive, sensitive and loving man in the world. You have stood by my side always, constantly cheering me on from the sidelines. I promise to do the same for you-in this life, and after. I love you so much, Derek. I’m so lucky the you found me. ❤️