Saturday, November 5, 2016

Normal Wishes

“I felt very still and empty, the way the eye of a tornado must feel, moving dully along in the middle of the surrounding hullabaloo.” 
― Sylvia PlathThe Bell Jar


We're 74 days into our 100 day wait and see game. So far Brian has been doing well, surpassing the expectations of his medical team. His blood work for the most part looks good. He's not facing any major GvHD, and he's here with us. 

I know I should be celebrating...but I can't.

There aren't really any words that adequately describe this experience. You'd have to experience it yourself to understand, and I would NEVER wish that on you. Ever.

As mundane as our days are, you would think I would be at peace...

I'm not.

There is always a little voice in my head whispering "what if" "when" "what's next" and as many times as people have told me to stop worrying, you would think that I would, and I assure you I would like nothing better than to just STOP.

I can't. 

I'd give anything to just be worried about "regular" stuff. 

Don't get me wrong, I am so thankful that Brian is doing well, that he still is still here, and that a 29 year old stranger donated stem cells to help my husband fight AML. I'd really like to hug that guy. I guess I kind of am, every time I hug Brian because they now share DNA.

I think part of my problem is I want Brian here with us forever and for always, and with this horrible disease there aren't any guarantees. Each day is like a cruel game of Russian roulette. I know there are no promises on the number of  our days, but most of us walk through life only vaguely aware of this reality. I'm keenly in tune with it,  obsessed with it. 

I wish I were not. 

I must be getting pretty good at disguising my continual state of unrest... at least on the outside. When I was questioning the doctor the other day and told him I was panicked he said... "That's what you look like when you are panicked?" Which made me laugh... and then cry.

When I see people they often tell me (after asking "How's Brian doing?") "Well you look good." 

I'm not sure if that's a compliment. I think it's supposed to be... but how am I supposed to look? Should I stop showering and brushing my teeth? Stop brushing my hair, and getting dressed? 

I'm certainly not going out of my way to "look good" and if people think I "look good" and are surprised, what the hell do I usually look like? You know.. pre-cancer? 

Nobody told me that before Brian got sick, and if you think about it that's kind of weird. I'm living on Halloween candy and Diet coke, I get about six hours of sleep a night on a good night, and I'm perpetually exhausted. 

I'm pretty sure I do NOT look "good"  I'm just trying not to look the way I feel, as I'm certain if that ever came to fruition I would send small kids screaming and adults would run away as if the zombie apocolype  had just begun. Some days I just have to remind myself what Miranda Lamber would say, "It don't matter how you feel it only matters how you look."

I think I might be losing it.

I'm so thankful for those who have stuck by us or stepped up during all of this. It feels so strange to know you are surrounded by loving good people but still feel so alone. I think part of my problem is not being able to talk about my worries and fears without being told to stop worrying and being afraid. If only it were that easy... just stop it... 

I know I'm not much fun to be around right now. I'm scattered (Even more than usual if that is even possible...scary I know) 

I wish I could be fun. 

I wish I could stop worrying. 

I wish I could enjoy fleeting moments of normal without my heart trying desperately to memorize every single detail, just in case.

I wish I could fix this.

I wish I could end this on a more positive note.

I know that everything will be as it is intended. I know that we will be carried through by the Grace of God, and I know that despite all I am dealing with right now, 

God is good. All the time. 


Saturday, September 17, 2016

The Little Things

"Walking with a friend in the dark is better than walking alone in the light."
-Helen Keller

I'm not even sure where to begin this post, and it's long overdue. There are so many people who have helped us out without fail, without expectation, without being asked, without proper thank you notes, and without judgement. 

I don't know how I can ever repay the kindness, generosity, and compassion displayed by so many, but I hope if you are reading this you know how much of a difference you have made in our lives. From financial support, to graduation parties, school clothes, fundraising, phone calls, friendship, meals, cards, texts, and prayers...the list is never ending and I am SO thankful it's overwhelming. I know that leukemia and all we are so truly blessed even when the world around us is chaotic and uncertain. 

Thank you for loving us, for supporting us, for your prayers, kind words, actions and deeds. I can only hope that one day I can repay you all through my own acts of kindness. Without all of you I don't know where we would be. From the bottom of my humble heart and on behalf of my family I thank you. Words are simply not enough, but right now they are all I have to give.

Brian is home now. Today is day +24. To most this will mean nothing, and if I'm honest I'll tell you that pre-cancer day +24 would mean nothing to me either. I wouldn't get it, and I hope that nobody reading this ever has to "get it" like we do right now.  He is doing very well but with his type of leukemia each day is a gift. His transplant has been successful so far but he still has a very long way to go even before we reach what will be our "new normal". 

Our days are filled with watching and waiting, for fevers, new aches or pains for things to appear or disappear, blood tests, IV transfusions, medications, and for me...running the kids to their activities. I've learned to appreciate the little things like my daughter wanting me to brush her hair, watching a baseball game without looking at my phone, the laugher of my children, snuggling, holding hands, and looking through picture albums. 

I took my husband to Home Depot the other day at his request and had to fight back tears (not because I hate going to Home Depot and I do hate going to Home Depot... Menards is way better) as I watched him walking up and down the aisles. It was so "normal" and I realized that I had to savor every moment of this normal because we now know all to well how quickly things can change. I wanted to race back in time and make the most of all the moments I so carelessly lived without truly appreciating the miracles that happen every day. 

Have you ever realized that you love somebody so much that it hurts? If cancer has done anything positive in my life it is that it's made me slow down and savor life... aside from that it can bite me, because I still hate it.

So as inadequate as this feels this is my rambling way of trying to express my gratitude, my hope is that you know how much I appreciate each and every one of you. 

God is good. All the time. 

Sunday, July 17, 2016

I Hate Running.

"Courage is grace under pressure"
-Ernest Hemingway 

Sometimes I see people jogging on the side of the road, and they either look serene and blissful, or they cause snarky comments to run wildly through my head.

It's not very nice of me, I know but I feel like it's ok because I did try Couch to 5K once and anyone who was unfortunate enough to witness that event certainly had those same thoughts about me. 

I did not look graceful, or serene. I "shlogged". I often felt like I was running in slow motion or the way you do in a nightmare.  I'm certain I could hear people thinking "Oh bless her heart, look at her trying to run... wait... is she running... or did she just get hit with a tranquilizer dart? Harold, maybe we should call 9-1-1" 

I'm not here to apologize to those I secretly make fun of in my head, nor am I here to apologize to those who just can't get the picture of me trying to run out of their heads. (But to you I should seriously apologize) 

I'm here because people keep telling me this about leukemia: 



Here's the problem:  I never really liked running. In fact I HATE RUNNING.  

I hate leukemia too, so equating it to running is not doing it any favors. We need to think of a better metaphor. Quickly.

We had an unexpected trip to the hospital last week. My poor husband said his bones felt as if they were going to "snap in half and burst out of his skin"and he couldn't walk without crying out in pain. It was terrifying to watch and to add insult to injury he initially didn't want to go to the hospital. In fact he threw a major tantrum about having to go... in front of my neighbor.  My angels were watching over me though and sent him JUST ENOUGH of a fever (and maybe a case of pink eye to hedge my bet) that forced him to go to the hospital. He wound up staying for six days.

When they discharged him yesterday there was a note in his chart that said the BMT had located a 7/8 match for him (I'd feel a lot better with a 10/10 and am still praying for that) and were trying to get insurance approval to proceed with the transplant by no later than mid August. This is both amazing and TERRIFYING all at the same time. Much like my attempt at running, I often feel like I'm a total failure at this whole dealing with leukemia thing. This is the hardest thing I have ever had to do and sometimes I just get overwhelmed with emotions. 

I'm pissed.

This is not fair, and before you say it, I know .....
Life's not Fair.

I know it better than a lot of people, if you don't know me and have just stumbled upon this rant feel free to go back through my posts and you will understand. I'm also sure I don't know how unfair it as nearly as well as many others do. I just don't get it some days. Scratch that.  I just don't get it period. 

I've had many friends tell me "God doesn't give you more than you can handle." I know they are trying to help, but I'm not worthy of all this trust God seems to have in me. I've failed in my words actions, and deeds many times.

I guess maybe I'm being asked this time to just let go and let God handle it, but my heart is perpetually on the verge of breaking and I really hate running. 

I'm scared.

I'm scared I'm going to mess this up. 
I'm scared I could lose my husband.
I'm scared my kids will become depressed, angry, or disappointed in me. 
I'm scared of watching my husband suffer.
I'm scared of feeling resentful that my life has been changed so much that sometimes I don't recognize myself.
I'm scared my husband will have complications that he doesn't even understand right now and will be upset with me for "letting" things happen.
I'm scared of all the uncertainty that makes up my daily life.
I'm scared people are judging the way I'm doing things. There's not a manual or a Leukemia for Dummy's guide for me to follow. Just some Facebook support groups and honestly those can either be a source of inspiration or a whole new way to worry about things I never even knew could happen.
I'm scared of dropping out of this marathon half way through because I just can't do it.
I hate running. 

I'm sad.

That my husband has cancer.
That my kids have a dad who has cancer.
That I can't do the things I used to do with my friends.
That I have to run. I hate running.

I'm Overwhelmed

With emotions.
With thanks.
With gratitude to my friends, family, and complete strangers who have stepped up, helped out, prayed, comforted, and supported us.
With hope for a future when we can look back and remember this and pay forward all the kindness and support that has been shown to our family.
With love.
With Faith that God will support us through our journey.

With the thought of putting on running shoes for a race I never wanted to sign up for. 
I hate running. I would never sign up for a marathon, but here I am somewhere near the starting line, with the finish line nowhere in sight, and I'm not sure how I even got here. 

I will run, or shlogg, and I'll likely cry out in pain many times along the way, but I'll get there. 

Thank you for cheering me on along the way.

God is good. All the time.












Wednesday, July 6, 2016

This Post is NOT about Cancer... But it's totally true!!!

"The truth is you don't know what is going to happen tomorrow. Life is a crazy ride, and nothing is guaranteed. "

-Eminem


Just when you think life can't get any crazier, it does. I know we all know this, but every once in awhile it jumps up and smacks you right between the eyes. Sometimes I think it even flips us the bird, or maybe that's just me.

This story is totally true, and actually kind of embarrassing, but I guess it also gives you an idea of how things are going in our house. I may appear to be keeping it all together, but sometimes things slip through the cracks!

Meet Ginny....

Ginny is our cat. She doesn't really like us all that much, but she lets us live with her. She doesn't ask for much either, aside from a warm place to sleep and cool water to drink from a running faucet, so never mind I take that back... she's actually a rather demanding cat. Her favorite hang out is our basement. I have told many people that she rules the house from our laundry room where she enjoys lounging on freshly laundered clothes still warm from the dryer. She spends about 90% of her time in the basement.

Meet Hazel

Hazel is one of our dogs. She also enjoys hanging out in our basement. There are three bedrooms down there, and a laundry room complete with a "catbox crunchy" buffet. Her favorite activities are being wherever people are, and chasing the cat.  She is  FREQUENTLY in the basement with Ginny. (Remember this part of the story, we have a CAT and a DOG in the basement daily!)  We also have another dog Delilah, but she is too scared to go down the stairs to the basement so she is usually hanging out in the kitchen hoping we drop stuff for her to eat.

So right before Brian went into the hospital we kept finding cat poo NOT in the litter box. Ginny has always been pretty good about using her litter box and we keep it scooped, but she is also very finicky so I told the kids to scoop more and put more litter in the box.  We kept finding "presents" around the laundry room and in the laundry sink. We wondered WHAT was wrong with Ginny. It didn't appear that she was sick based on her "gifts" so I didn't worry TOO much but instead wondered what my diva cat was irritated with us for. I know you are wondering where I am going with this, but trust me, I 'll get back to it....


Yesterday I brought Brian home from the hospital. Life is way better when he is home with us. I woke up early to give him his medicine and went upstairs to fill out more paperwork and take care of last minute details for Noah's trip to Europe.

Brian came upstairs about an hour later and said, "There is an opossum in our basement."  Chemo does weird things to a person and his eyesight is not the best lately so I calmly asked him to repeat what he said. He looked at me and said, "THERE IS A OPOSSUM SITTING ON OUR WASHER!" I honestly thought he was kidding, but I went downstairs and sure enough there was a FLIPPING opossum sitting on our washer as if he (she?) were wondering what WE were doing in the laundry room. It didn't appear scared or angry... it was just SITTING THERE!  

Needless to say I lost my mind and ran upstairs. I may or may not have ran in circles like a ninny for a brief moment. I'm taking the fifth on that one. 

All I knew was that Brian my immune suppressed husband should probably NOT be messing with the opossum. I tried to call my father in law for some live traps (that was my great plan) but he wasn't answering his phone so I called his wife, and she didn't answer her phone either so I called like 84 more times and they still didn't answer. So I just called my friend Michelle. She can usually fix everything. Everybody should have a Michelle in their lives. 

While I was making phone calls my husband went outside and got fishing nets and welding gloves and was arranging rubbermaid tubs in the basement. In a momentary flash of clarity I woke up Ricky and told him to go help his dad catch the opossum in the basement... I'm not real sure what I thought he would do, but he woke up and went downstairs to help out.  Ruby, Clara, and Noah had all armed themselves with baseball bats and were ready for battle if needed.

Within minutes Noah ran upstairs and opened the back door and my husband came upstairs (moving pretty quickly for a guy with cancer I might add) with a net inside a tub and a opossum in the net! He set his "trap" in the backyard and sat down to catch his breath. I stopped hyperventilating and went to find my camera to take a picture of our intruder but by the time I found my phone our friend had disappeared.

So after we all calmed down we started thinking about things and realized that IT WAS NOT CAT POOP we were finding in our laundry room! It was opossum poop! 

Ginny's food bowl is in the laundry room and we had both wondered WHY after ten years she had started moving it all over the laundry room, but we just attributed it to the fact that she is a diva cat and was probably mad at us for not filling it enough, or filling it too much...she's just like that. We are constantly disappointing the poor cat.  

Which brings me to my question of the day...

HOW DO I HAVE A CAT WHO LIVES MOST OF HER LIFE IN THE BASEMENT YET SHE LETS A OPOSSUM MOVE INTO MY LAUNDRY ROOM?!??!!

I have been living in my house
and doing laundry
while my husband is in the hospital
and there was a opossum living in my laundry room.

Think on that for a minute.
This could ONLY happen to me.


Hazel isn't off the hook either. Don't dogs have a super keen sense of smell? Shouldn't she be trying to protect me from the opossum that was living in our laundry room? Why didn't she GET the opossum? She should be ASHAMED of herself for failing to protect me from the laundry room opossum.  Feel the bad shame Hazel Grace. Feel the BAD SHAME!

I had a opossum living in my laundry room for quite possibly over a week.

I will not be getting over this any time soon. What if the opossum moved his (her?) whole family in there? I'm terrified to go downstairs now which is problematic because that is where my bedroom is. I may never sleep again.

Thank God Brian was home to handle it. He's always been my knight in dirty Carharts.

God is good. All the time. 
(Even if he lets opossums live in my laundry room) 





Monday, June 20, 2016

Hello from the Other Side...Or , YAY! We're not in the hospital!

"Home is the nicest word there is."
-Laura Ingalls Wilder 


We are home, for now, but most of you know that already. If feels so great to have my husband at HOME with us! It's nice not to have to rush to the hospital every morning (although we frequently go for blood tests and other appointments.) It's nice to be able to at least pretend that things are back to "normal" and it's nice to be able to see my husband happier. 

Being home however doesn't mean that he is cured.  Unfortunately AML is a marathon, not a sprint. How I wish that he were just "cured" and we were DONE with this chapter of our lives, but alas that is NOT the case even a little bit. We have a long ways to go still, and I frequently remind myself that I need to take things one day at a time.

We went for ANOTHER bone marrow biopsy today. My poor husband has now endured FIVE of these in the last month and a half! The doctors told us that when we come on the 29th to meet with the doctor we should have a bag packed. If the bone marrow biopsy is GOOD he will be admitted to start his consolidation chemo which would be about a week in the hospital (to keep the cancer from coming back) if it's not good, he will have to be in for another long bout of chemo, so another month or so. I'm praying for good results!

The bone marrow transplant team said they are having "difficulty" finding a match for Brian. They didn't exactly say why, but one doctor said something to the effect of "you never know who hooked up with who a ways back" so I'm guessing that to mean that my strawberry blonde, blue eyed, freckled husband has some non-european lineage in his DNA somewhere. One nurse said he was "unique" I of course knew this already, and am not surprised he can't do things the "normal" way. Every step of this journey has thrown us a curve ball, but I refuse to lose hope!

The transplant team discussed other possible ways to get the transplant done in the event they couldn't find a match, either cord blood which would be an advantage in that the stem cells in cord blood are young and need less "matches" since they aren't fully developed or using a half match as in one of the kids. Brian doesn't want one of the kids to be his donor, but when he discussed it briefly with them they were arguing over who would "GET" to be the donor! They love their daddy, and would be honored to be the one to help save his life!

Speaking of donors, and searching, we will be hosting a Be the Match drive at Ypsilanti Community Schools high school on July 15th from 3-7.  I need volunteers to come an hour early and learn how to help with swabbing and registering people. 

If you read this and you are able, please shoot me an email or message to let me know, even better if you are famous or something and happen to read this (Hint Hint Ellen, Blake Shelton, Bachelor Franchise folks...) and want to show up to make MORE people come out and try to be the match for somebody PLEASE DO!!  You might not be the "unique" match for my husband, but we are not alone in this battle and there are many people also searching for their perfect life saving match. 

I am so thankful to all the family and friends who have helped us out through the Meal Train, and the Go Fund Me page, and helping to get our Be the Match drive going. 

If it were not for your kindness and generosity I don't know what we would be doing right now. Brian will get social security disability but they won't even send a check until November! (This by the way makes ZERO sense to me, but that is a whole OTHER topic for another post some day...) 

Thank you, from the bottom of our hearts for all of your help, may your kindness be repaid to you tenfold and then some.

Now that my update is complete I need to get a Diet Coke and get ready for The Bachelorette.  

God is good. All the time. 

Thursday, June 9, 2016

When Life Hands you Lemons...


"The most important thing is to enjoy your life - to be happy - it's all that matters."
-Audrey Hepburn



I'm almost scared to say it, but my love has been fever free for close to 48 hours. His rash is gone, and his smile is back. His blood counts are starting to look good too. They did a bone marrow biopsy yesterday and I'm praying that they say he just took a little longer to respond to the chemo.  If he DID respond he SHOULD be able to come home in a few days for a couple weeks before starting his next round of chemo. This would be a much nicer scenario than starting more chemo tomorrow.  Please keep those prayers coming! I feel them working and when I look at my husband I SEE them working!

Since he was feeling good today he took me on a date. Yes, a date in the hospital! I'm still feeling all hearts and rainbows and unicorns. I'm sure you are wondering what we did for our date so I'll tell you!  First, we went to an art gallery and looked at all sorts of beautiful artwork in a variety of different medias. There were several different artists on display! (Fine maybe it was the Gifts of Art display on the first floor of the hospital, but it is quite impressive!) Next he took me out for drinks. (At the vending machine, my husband is quite chivalrous!) We also went to a jazz concert on the lawn in the courtyard and I managed to convince him to dance with me outside! I should mention that he held my hand and guided his IV pole at the same time like a boss. Today he told me he's sick of chemo and only wants to look at pretty things now, he also said I'm his favorite thing to look at. ((Swoon)) I felt like a teenager in love. One of the techs that takes care of Brian calls us the "love birds." I imagine there are a lot worse names that we could be called!

Our marriage has been through a LOT, and according to statistics we should be divorced several times over, but somehow we always manage to get through. We are far from perfect, but we are perfect for each other.

Just had to share my pretty amazing day, it's one I want to remember forever.

God is good. All the time. 

Tuesday, June 7, 2016

Looking for Rainbows

“Just when you think it can't get any worse, it can. And just when you think it can't get any better, it can.” 
― Nicholas Sparks


They say a picture is worth a thousand words. I have no words for this picture. I can't even look at it without tearing up. Our cancer battle has continued. A week of fevers and rash, lots of tests, medicines, questions, and fears, but not a whole lot of answers.  

Here's what we DO know. The initial induction treatment didn't work like we had hoped. Going in, Brian had 87% blasts in his marrow. The bone marrow biopsy last week showed that he still has 40 - 50% blasts. Our doctor told us he would be meeting with other leukemia specialists to come up with a plan. We met with him today.

Tomorrow he is going to have his FOURTH bone marrow biopsy since April 29th. The team felt that since his platelets and white blood cell counts were beginning to go up this would be a good idea to make sure that his first round of chemo didn't work. The tests they sent to Utah showed that Brian has a very complex genetic thing going on. He doesn't fit neatly into any of the sub types. We were initially told he had biphenotypic leukemia. Our current doctor did not feel that was the case and in fact still says that is NOT what he has. However he does have a lot of genetic traits of ALL leukemia, along with traits of AML leukemia. I'm not sure how having traits of BOTH doesn't make this biphenotypic (both types) but the doctor says it is NOT that. Instead my poor husband's diagnosis is now "acute leukemia with ambiguous lineage." I couldn't make this up if I wanted to. Ambiguous Lineage.  Great.  What's that mean you ask? Hell if I know. I think it means we are in a league of our own. I tried to google it. I can't find much. While I always knew my husband was unique and special, I never imagined he'd have to be that way even when dealing with serious illness. Here's a picture just in case you don't believe me. 


So, pending the results of the bone marrow biopsy, Brian will be starting MORE chemo on Friday. They have to wait until Friday because he needs to get off one of the anti fungal medications for three days because it can't be mixed with one of the meds in the chemotherapy. They will be trying GCLAC + P + V. Basically it's a lot of chemo for both types of leukemia. We are looking at probably another month (at least) in the hospital.

On the bright side, his rash is almost gone and he was fever free most of the day. We had a REALLY GOOD visit. We talked, and laughed, and snuggled. I can't kiss him because well, germs plus no immune system means no kissing, so sometimes we just cuddle up in that stupid twin hospital bed and snuggle. We watch court tv, and sometimes he just sleeps but it feels good to be in his arms where I belong. Today we were snuggling and the deacon from our church came to visit us! I think it is against Catholic to snuggle in front of your deacon, although deacons can get married and have children so I may have to get back to you on that one. We stopped snuggling and chatted with him and prayed. He said going through all of this means less time in purgatory for us, Brian later said that is great and all but HOW MUCH TIME DOES THE DEACON THINK WE WILL BE IN PURGATORY?!?! This hospital visit already feels like forever! I guess if I need to spend a few extra days in purgatory for snuggling my husband, it was all worth it. 

The kids are holding up pretty well all things considered. I'm working on keeping their lives as "normal" as possible. It's really hard wanting to be two places at once. My heart is continually being pulled in two directions, and I still can't kick the guilt of not being able to be two places at once. I'm praying for strength and grace when I'm not praying for healing. 

Here are my positives for today.  We have a plan. We spent a nice day together, and I saw more smiles this afternoon than I had seen all week. If anything this sickness has showed me HOW MUCH I love my husband. I wish I could take this all away for him. I'd do anything to see him well. (Remind me of this when he's in remission and grumping about me forgetting to pick up dog poop.) 

To my sweet husband, I hope you know that in sickness and in health. I will love you forever and for always, because YOU are my dear one. 


God is good. All the time.