Back to the Drawing Board.


it is with great sadness as well as a flood of other emotions, that I tell you the transplant failed. The way my doctor put it, my cancer has become very smart by now, since it’s been around for so long. It has no trouble recognizing healthy cells to take over. So what does that mean??

here is the plan:

  1. Liver biopsy ASAP (this will be the immediate response, and will be performed sometime in the next week)
  2. readily available trial medication
  3. Donor lymphocyte infusion
  4. clinical trials, various
  5. 2nd donor transplant

My docs seem optimistic, which makes me feel a little better, even if there is a hidden agenda is curing someone like me, and gaining a little publicity for it. Because I say, use me all you want in that case!!

there is a readily available drug that just came on the market recently (called NIVO something or other) which in theory could work for someone in stage IV with transformed diseases. The kicker here is that this drug has not yet been tried on someone post allo transplant like me. But trust, I’m totes be that lab rat.

There are a few other clinical trials for transformed disease in the liver, that I should be eligible for as well. These are designed to test the DNA of my liver, and to take a look to see if there is say a lung cancer treatment medication, that looks like it could potentially pair well with what my physical make-up shows.

There is also a procedure called a donor lymphocyte transplant. This is where just lymphocytes from the donor are injecting into my immune system. This is supposed to open my immune system up, so as to make it succeptable to accept these donor cells. The risk of that is gvhd (graft vs host disease) but at this point, I’ll take that any day over cancer.

My transplant doctor told me that we have some time, and I’m not going to die. You have no idea how powerful these words were to me, and I’m praying he is right. He said the last resort is a second allo, because he really believe that a combo or one of the other things listed above could be my savior.

Anyway, overall both derek and I are feeling both shocked and numb at the same time. Once again this happens during the holidays. Once again, our hopes of a cure are dashed. And once again, we didn’t see it coming. I really appreciate all of the positive vibes, prayers, etc from everyone (especially Mrs. Emily Quarrick’s class). It’s rather hard to talk on the phone right now until I can get things together mentally, so please don’t take offense if I don’t answer or it takes a while for me to call back.

I guess overall, things could be worse, and at least none of these drugs will make me lose my hair. So many perks.

dear God-I’m not ready yet.  believe me when I say that I’m strong enough now. Please move on.

Poopy Bubbles


This time of the year sucks for me. It used to be my favorite….getting ready for the holidays—warm sweaters—carving pumpkins—X mas shopping, et al. But after 3 years of relapsing right around this time, I just can’t wait to get through it all, and move on to spring. Hopefully it won’t always be like that, but maybe we will just adopt the whole Xmas in July thing. Why not?

It has been almost one year (Nov. 3, 2014), since I relapsed, and was basically given a death sentence. I can honestly say that this has been the most emotional, and hardest year of my entire life. Through it all, I have really tried to remain positive, focus on what’s in front of me, and pray that this donor transplant works. Luckily you all have been such a great sense of support for all of us. That being said, my scan is coming up in one week (the 27th), and I’m terrified. On my good days, it’s easy to forget that I have cancer. But then my timer goes off on my phone, and it’s time to take 15,000,000 drugs. And I remember that life is so much different for me now than it used to be. So any and all positive vibes are always welcome with open arms.

 

Here is what we’ve been up to these past few weeks:

 

Football is still in high gear in our family. Derek is gone a lot of the time coaching, but he really loves it, and Mack loves seeing him on the field. The kids he coaches are all very sweet, and have been very supportive of my illness and our family as well. They are also kicking ass. (GO WOLVERINES!) Mack and I have visited the pumpkin patch a few times now, and have spent time decorating the house for fall. He LOVESSSS being outdoors, which is often hard for me on my days where I’m really low energy, but we have been having lots of fun regardless.

 

This past weekend, we attended a wedding in Pittsburgh, and went to the Steelers game the next day. Now I am a Browns fan by default, since I was born and raised in Cleveland. But I will admit, it’s nice to go to a game where the team you’re rooting for actually wins! (By the by, I made the mistake of cheering for the Browns briefly when the score popped up on the jumbotron, which I have mentally noted, will never do again. If I could be killed by an evil glare, I’d be dead 100 times over right now). It was nice to get away for a weekend with just the hubby though, and I do have a funny story/YELP review to share:

 

Crown Plaza Pittsburgh. ZERO STARS…..We arrived at the hotel only a half hour before the wedding, so we had to get to the room, and quickly change. Of COURSE, (Luckily he stopped reading my blog because I always post about him, or he would kill me for this next part), Derek HAD to poop before we left. I mean could his timing be any better?! I swear to God it’s only when we are running late for something that he decides suddenly he HAS to either 1) go to the bathroom 2) organize something 3) fix something. *SIGH* men. Anyway, he goes to the bathroom….flushes the toilet. No sooner does the water stop running after the flush when I heard a loud gurgling noise coming from the toilet. GULP…then GULP GULP GULP! Have you ever seen Ghostbusters II, where the pink slime comes out of the bath tub faucet, and it looks like an arm trying to grab you in the air? If not, you are missing out, and if so, it looked just like that! Then all of a sudden came an ERUPTION of BUBBLES!!!!!!!!!!!!!!!!!! I’m talking bubbles fucking every.where. First, the gross toilet water shot into the air, and all over the floor, then bubbles galore, like we were throwing a God Damn foam party!!!! I mean could you imagine if Derek had stayed on the toilet like one second longer?! Talk about a clean ass! So I called down to the front desk totally freaking out. They send up a 95 year old maintenance man to fix the toilet. (We were late for the wedding, so I didn’t have time to deal with getting a new room or anything). So I let him in, and we leave. After the wedding, I came back, went to the front desk, and asked about the status of our room/toilet explosion. The Asst manager tells me the problem is resolved, and the maintenance man mopped up the floor, so our room is fine now. I asked her if it was going to happen again, to which she replied “probably not”….er….that’s totally reassuring. (Apparently, the washing machine line got backed up, and tied into the toilet lines! I don’t even want to begin to think about whether or not that meant people were sleeping on poopy sheets). I kindly explained that I witnessed poo water fly into the air, and if housekeeping didn’t bring a Goddamn UV light to sanitize the whole area, I wasn’t going to stay in that room. She again, assured me the room was fine. It wasn’t until I actually pulled the “C” card, and said “Here’s the deal. I have CANCER. I have had C diff twice in the past month, and I cannot and WILL not stay in that room”, that her eyes widened (like she was in fear of my life), and she set us up with a new room. Her closing remarks “I know for sure this room is extra clean”.

 

So FYI people, if you ever stay at the Crown Plaza in Pittsburgh, be sure to ask for the “extra clean” rooms with “non poopy water sheets”, because apparently it makes a difference. Anyway, that is my funny story about the weekend. Shit like that only happens to us.

 

Health wise I’ve been feeling ok. I can tell now when I am in need of blood, or when I’m dehydrated though, which I guess is good. On Friday, I turned on my computer to work, and was super dizzy staring at the screen. I looked in the mirror and my skin was gray. I knew for sure I needed fluids, so I called the PA, and spent the whole day in infusion. I’ve had insanely itchy skin lately—(which terrifies me, since that was the only symptom I had when I relapsed last year)—but hopefully it’s just because my skin is also very dry from the weather, and my meds—So I had some Benadryl. My mom ended up having to take me home because I was totally out of it, after all that. It was a long day to say the least. But, feeling in tip top shape now!! I will be going into the office for a few hours on Weds., and I’m looking forward to seeing my coworkers.

 

Mack is going to be a fisherman this year for Halloween, which is a lot more exciting than his rendition of “bow tie” man (aka wearing dress clothes) last year. Pics to come, along with an update on my scan. I normally don’t ask, but I could really use some prayers/positive vibes. I’m really scared of relapsing, and no amount of drugs can make that fear go away.

 

Additionally, A very close friend of mine recently suffered the loss of her child. October is pregnancy and infant loss awareness month, so if you could just keep my dear friend in your thoughts, along with all of the others who have unfortunately suffered along with her, I would really appreciate it.

 

Finally, after reflecting upon this year, coming up on my one year of relapse date and scan, here are my words of “wisdom” for whatever it’s worth: If you have been thinking about doing something that you’ve always wanted to do, but keep saying to yourself that the timing isn’t right……The timing will never be right. The only time you have for sure, is right now. Don’t wait. Like Nike says, “Just do it.” Time just ticks away, and I would give anything for more of it.

 

Peace, love and toilet bubbles-

Meb

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Sadie..getting huge.

Sadie..getting huge.

West G game

West G game

Oh you know, just using my type A personality to its fullest potential

Oh you know, just using my type A personality to its fullest potential

Melted crayon pumpkin

Melted crayon pumpkin

Our kid is a sleepwalker. This small space between the coffee table and coach was an interesting place.

Our kid is a sleepwalker. This small space between the coffee table and coach was an interesting place.

My hair is finally growing, but somehow my donor missed the message that I prefer blonde!

My hair is finally growing, but somehow my donor missed the message that I prefer blonde!

Steelers game

Steelers game

 

The Kissing Hand 


Has anyone ever read this emotionally draining, yet well written children’s book??! Well here is a strong suggestion….DO NOT READ THIS BOOK IF YOU HAVE CANCER, ARE DYING, ARE PREGNANT/MENAPAUSAL/IN ANY WAY HORMONAL, OR ARE ON YOUR PERIOD!

The premise of the story is about a little raccoon who was afraid to go to school. The mom responds like this:

“… ‘A very old secret’, said Mrs. Raccoon. ‘I learned it from my mother, and she learned it from hers. It’s called the kissing hand.’ ‘The kissing hand?’ asked Chester. ‘What’s that?’ ‘I’ll show you’. Mrs. Raccoon took Chester’s left hand and spread open his tiny fingers into a fan. Leaning forward, she kissed Chester right in the middle of his palm. Chester felt his mother’s kiss rush from his hand, up his arm, and into his heart. Even his silky, black mask tingled with a special warmth. Mrs. Raccoon smiled. ‘Now”, she told Chester, ‘whenever you feel lonely and need a little loving from home, just press your hand to your cheek and think, Mommy loves you. And that very kiss will jump to your face and fill you with toasty warm thoughts.’ She took Chester’s hand and carefully wrapped his fingers around the kiss. ‘Now, do be careful not to lose it’, she teased him. ‘But don’t worry, when you open your hand and wash your food, I promise the kiss will stick”. Chester loved the kissing hand. Now he knew his mother’s love would go with him wherever he went. Even to school. That night, Chester stood in front of his school and looked thoughtful. Suddenly, he turned to his mother and grinned. ‘Give me your hand’, he told her. Chester took his mother’s hand in his own and unfolded her large, familiar fingers into a fan. Next, he leaned forward and kissed the center of her hand. ‘Now you have a kissing hand too’, he told her. And with a gentle ‘good-bye’, and ‘I love you’, Chester turned and danced away. Mrs. Raccoon watched Chester scamper across a tree limb and enter school. And as the hoot owl rang in the new school year, she pressed her left hand to her cheek and smiled. The warmth of Chester’s kiss filled her heart with special words. ‘Chester loves you’, it sang. ‘Chester loves you.’” 

OK, so Mack for some reason was having a hard time wanting to go to school this morning, so I decided to open up this new book and read it to him. WHAT. A. MISTAKE. Sure it made him feel better, but then he says to me, “Mommy, can we do the kissing hands if you have to go to heaven?” COMPLETELY. LOST. IT. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 So I just want to say, DAMN YOU, Audrey Penn, and your fucking beautiful words!!!!! I will now be a mess all day, you asshole!!!

PSS…we both decided that the kissing hand would be a really good idea. So first I kissed his hand, and then he kissed mine. And I’m not sure about him, but my heart feels warm.

  
 

 

 

 

5K complete! 


I have lots of pics to post!! Have been playing catch-up for the past few weeks, in the wake of our fake family reunion. This is our one vacation of the year, every year, and we are already starting our countdown until next year!! It’s great now because Mack understands “Pennsylvania” and the “Fake Family” now, and keeps asking if 365 days is a “weally long time” to wait. Yes, bud, it sure is!

The potter Trot was this weekend, and I once again, really have to thank the Potter Family and their amazingly brave daughter, Erin, along with my friend Corrie who worked really hard to put the event together. The turnout was great! Lots of friends, family, and fake family (sadly, minus the Rempels and Balyeats who were there in spirit!), came out to celebrate the event, and I was honored. There were even quite a few people who I didn’t know—people who read my blog—who came, and introduced themselves to me. That was quite a shock, and so nice! I decided to try to run the 5K, which I ended up doing! Granted I had to stop a few times to dry heave, but ya know…baby steps! At least I finished! This was a huge accomplishment to me, really. I haven’t ran a race since the towpath ½ marathon, last October!! My nephew Mark actually finished 5th place overall! Oh to be 11 years old again! :/

 

In other news, Mack has been asking a lot of questions about heaven lately. When I will be going to heaven, If daddy will go with me, if he will be left alone and “all by he-self”….ugh. I’m not sure what brought this up, but it’s so hard to keep a straight positive face when he asks me stuff like this. I just always say, “hopefully not any time soon. But if it happens, you won’t be alone. I’ll always be with you, even if you can’t see me.” I’m not sure if I even believe that myself. I’d like to, but hopefully he does. In other Mack news however, he’s been super into fishing lately, and has really been loving this new school year and his new class. (Thank God the screaming/crying fits on drop-off are over)!

 

Physically, I’ve been ok. I’ve been able to gain a little weight back, and have been a lot more active (or at least trying to be). My energy level is much better than it has been, and luckily (knock on wood), I’ve been C diff free for the past few weeks. Phew! Mentally, unfortunately I’ve been starting to think about my next scan coming up at the end of October. A little over a month away. Every time I feel itchy (in large part just due to dry skin), I completely freak out inside. I try not to show it though because Derek seems to scare easily about stuff like that. It’s a lot sometimes though. Mentally I could use a break. Sometimes just working full time (which I’ve been doing) helps. Sometimes it’s overwhelming. But either way, it takes my mind off of what is to come, and that’s a good thing.

 

My hair is coming back in. It’s a weird texture. Like super soft and fluffy like a stuffed unicorn. J But I’ll take about any hair at this point, because the nights sure are cold when you’re bald! And of course like all my fucking leg hair has come back in. Like at least that could have stayed away for a while. No such luck.

 

I’m going camping this weekend with some friends, and I’m pretty excited! I haven’t been camping since high school I think. …Which has been about 20 years L Knowing me, I will probably come back with a tick filled with lyme disease or something, but what the hell. It’ll be fun for a few hours!

 

Please keep the mother of one of Mack’s close friends in your prayers, along with my girl Jackie, who just grew her eyebrows back! Get it girl!

 

Peace and Unicrons-

MEB

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Punderson

Punderson

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Driveway painting

Driveway painting

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Carp!

Carp!

BFFs

BFFs

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My aunt and uncle who kicked my ass :/

My aunt and uncle who kicked my ass :/

My nephew mark-5th place!

My nephew mark-5th place!

My sister, also a cancer survivor, and her kids crossing the finish line!

My sister, also a cancer survivor, and her kids crossing the finish line!

Chesterland community preschool crew!

Chesterland community preschool crew!

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Erin and I

Erin and I

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C-Diff is C-Dumb


soooo hopefully I’m back on the mend in like 24 hours so as not to ruin the only vacation we have all year–the annual Fake Family Reunion! 

C-diff round 2 struck this past weekend, and up until today, I’ve barely been able to get out of bed, or keep down water food etc. I’m on antibiotics and have been able to rest which has helped a lot. I hate feeling like I can’t do anything. And I hate that Mack says things like “mommy you sick again? Ok I’ll just play by myself AGAIN.” Or “I’ll get more OWN Cereal (loud sigh).”oh well. At least I’m not contagious. 

Apparently I just never really got rid of it the first time, and required a bit more antibiotics. So I’m on all the drugs, all the days. 💊 working out has been non existent and if I’m being totally honest, I’m pretty sure I weigh as much as I did in like the 8th grade, coming in at a whopping unappealing 107. 

Thanks to my employer for allowing me the time off to get better, to my docs who are allowing me to come in daily for fluids/drugs rather than be admitted so I can attend our family reunion, and to my parents who have helped us out in a major way this past week. ❤️

Also another thank you to the Potter Family, and those of you who have expressed interest in the walk/run. The website has been updated to reflect the registration form for those who have asked. And thank you!!!

Sept 20 is also baby Clare’s first birthday! -for those of you who have been following my friend Erin and her journey on clarebearstrong.wordpress.com 

Cheers and happy pooping
Ps: Good luck West G!

 

Erin.


once upon a time, there was a little girl named Erin Potter. I remember reading posts about her struggles battling leukemia since she was a toddler. I remember distinctly sitting in the parking lot at 5 below in Mayfield Hts, Ohio, not wanting to go in because her mom, Jeni, was on the radio. Everyone was rallying to help her meet Justin Beiber, and to raise money. And I remember crying. Deep, horrible, can’t-catch-my-breath, ugly crying. I thought, what must that be like at such a young age? What is it like as a parent to have to go through what she was going through?

Well, now I know. Except what I don’t think Erin realizes is that she is, and has been, such an inspiration to me. Our stories and treatments are very similar. Whenever I think about dying, I always think I’m just too young. I just want to see Mack grow up…

But I’m 33. Twenty plus years older. At least I have a Mack! I have a husband, a house, my drivers license! I graduated from high school and college! I really have lived. It puts a lot into perspective when you see someone so much younger than you, be so incredibly brave. And when I start feeling sorry for myself, I think about people like Erin or like kris and I think “things could always be worse”.

Erin is currently cancer free, after one failed transplant, and a successful donor transplant. THIS. This is why she’s a total bad ass, and I want to be like her.

The entire Potter family has been very supportive and generous to us. So much, in fact, that the annual “Potter Trot” this year is in support of me and my family. I really can’t put into words how grateful/honored/flattered we are. thank you!

For more on Erin: http:Erin meets donor

For more on the Potter Trot (5k race/1 mile walk): Potter Trot info

Additionally thanks for all the well wishes! Feeling back to “normal” after my recent bout with C diff. Gross. Still sore and fatigued a lot, but chugging along, and getting back into a workout routine/running has made me feel semi human again. I am still going into the Hospital once weekly for lab checks and magnesium infusion, but whatever. I’ll do that for the rest of my life if it means I’m cancer free! My next scan will be end of October or early November. I’m going to try not to think about it, until like a week before.

My hair is growing a lot, but sporadically. It looks like male pattern baldness, except with pubic hair. I also have dandruff all over the place, because the skin on my head is so dry. I have used all kinds of lotions and creams etc., but it’s still really dry. Someone once told me that coconut oil or olive oil on your head opens up the hair cuticles, allowing your hair to come in more quickly and without the dryness. That’s great, but I don’t want to smell like sunscreen or an Italian meal all day long, nor do I want it all over my pillows at night. Pass. Sadie is officially one year old now, and had her check up at the vet earlier this week. We came home with anti anxiety/depression medications because apparently she’s nuts. So you know, that seems appropriate for our family.

next week is our annual Fake Family Reunion! Can’t wait! Until then-here are some pics from he last few weeks!

 

 

Steelers pre-season game. Don't judge me, I go for the beer.

Steelers pre-season game. Don’t judge me, I go for the beer.

 

 

 

 

 

 

 

 

 

Just reading about bugs and eating beans (normal?) with cousin Leah!

Just reading about bugs and eating beans (normal?) with cousin Leah!

 

 

 

 

 

 

 

 

 

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I said, ok you can try a little bit on a spoon...

I said, ok you can try a little bit on a spoon…

 

 

 

 

 

 

 

 

 

Mack and his GF, Quinn

Mack and his GF, Quinn

 

 

 

 

 

 

 

 

 

This was my throw back Thursday pic! My giant ass spleen!

This was my throw back Thursday pic! My giant ass spleen!

 

 

 

 

 

 

 

 

 

Alicia.


this is going to sound really weird, but here it goes. 

Last night, I couldn’t sleep well. (Shocker). Every time I was able to fall asleep though, I kept having the same reoccurring dream over and over again. I couldn’t see any faces, and didn’t know what it was about. But in my dream, I was told by someone to post a blog to someone named Alicia. And, if you’re name happens to be Alicia, here is the message you’re supposed to hear: “stop worrying about it. Everything is going to be ok”. 

So now I’m curious! If this somehow pertains to you, please fill me in on what this means! Also if this happens to be real, I’m going to buy a lotto ticket. 

TMI update


ok so just a friendly warning! TMI post. Here we go:

So as it turns out, no GVHD!!!! Nope, instead I have c diff which is essentially like infectious diarrhea, weight loss, random nausea, fatigue and lack of appetite. I could have had this for quite a while, considering I have had all the above symptoms, minus the poopy part until recently. The GI doctor I spoke with, said that with all the antibiotics that I’m on, combined with my frequent trips to the hospital is likely how I picked it up. AWESOME. Hospitals are so clean. Derek and Mack are fine because they aren’t as susceptible as I am, and have been exposed for weeks with no symptoms themselves. 

Feeling much better with fluids and meds-pretty hungry in fact. Even though I had 3 pointless enemas today, at least I don’t have to get a giant scope shoved up my ass.  I’m so beyond elated not to have gvhd, which means my German man is cooperating with me, and getting along great with my healthy cells 🙂 

Hopefully will be out of here tomorrow. I am ready to get better, be a better wife, mom,  and friend. In other words, I can’t wait to just be normal again. Thanks for all the encouragement and prayers! Never thought I would be so happy to have c diff! 💩💩

-please say a few extra prayers for my friend bob. He could really use some positive vibes.

  
Happy to have c diff. Please don’t mind my no makeup and chapped lips selfie.