Day + 83 – Goodbye Room 300

This evening Jennifer and I are spending out last night in room 300 at the Staybridge Hotel on Olentangy…aka Homestead South. Over the last couple weeks, I have brought home most of the things we had here. When we came back in May, we were wearing pants and long sleeves, now it is warm enough for shorts and a tshirt. The first days, she was still coughing,  so  drawers were filled with cough meds and breathing treatments.  We no longer use those things. She was too weak to get herself into the large king size bed, now she wishes she could take with her the very comfortable mattress we have slept on.

Although the last few months have been hard, Jen and I have been through it together. We found ways to live in the city  on our own. We have spent a lot of time crying. We have spent a lot of time praying. But we are ready to go back full time to being a complete family under one roof.

We still will be coming to Columbus at least once a week for clinic appointments,  and still possibly having extended stays here at times. There is still so much to heal. Jen has not yet grown back platelets completely and her white count still needing injections to keep up. We still worry about infections, GVHD, bleeding, fatique, side effects of chemo and radiations and the many meds Jen takes daily. And hopefully the fears of the cancer returning will be replaced with new thoughts of what great things lay ahead for both Jen and I. 

As we push closer towards day +100, we are preparing for Jen’s survivor party on July 22. It is our hope, she sees so many who shared moments with us and those who have prayed for her. We are so blessed with Jen getting better, to have had room 300 where we have created memories, and for all of you who have loved Jen. 

Day + 80 – Words Linger 

With the news Jennifer is only needed to be at the clinic once this week, I was excited to have more time at home. Over the last several months, so much has been left undone and untouched. 

The spare room has been where all boxes and tubs full of supplies, cards, and various other things have collected. Clothes I had bagged up for the thrift store still waiting for me to deliver and random winter decorations in a box sit waiting to be put away. And although I knew it will take me quite some time to get to it all, I hoped I would start to tackle it this week. 
Unfortunately,  none of this got done. I tried to start on it , but it felt overwhelming.  Every little thing made me feel angry and defeated. I fought tears starting early Wednesday morning and they continued to stream well into Thursday. 

When you are feeling low, any words spoken to you, that don’t lift you up, hit harder than they may have otherwise. Wednesday afternoon, I found myself wrapped up in self pity when I came upon some harsh words spoken to me. And even though an apology followed, the words still linger in my head and heart.

I tell myself to not give in to self doubt.  I tell myself to remember those who say hurtful things to others, only reveal their own character and not mine.  And why I fight this incrediblly sad feeling inside, I realize this is not helping Jen get better.

So tonight I decided to give myself the evening off. Jessica has come over to hang out with Jen, and Randy and I decided to drive to Columbus to pack up the rest of the stuff still needing brought home. I hope while I’m away, I find back my drive and my ability to be strong.  I need to find back that strength that keeps Jen moving forward. 

I close this with a bit of advice to those who care to listen.  Often we have others relying on us, and when someone shouts in anger at another, it not only hurts the one whom the words were shared with but also those who depend on that person. Jen has lost the most by my inability to put on a happy face.

Day +76 – Seven Month  Mark 

Here we are seven months into being diagnosed and a day shy of eleven weeks post transplant and we are still figuring out what works and what doesnt. Thankfully, Jen hasn’t been admitted to the hospital now for almost two weeks. But she has been struggling with having her steroids decreased.  But we have found between a bendryl and a pain med, she is able to get relief. 

Now on to something I must share. On our drive back, Jen shared a few of her fears. She spoke of her high school graduation party and her disapointment in not having any classmates attend. She said she fears her party in July will be a huge disapointment and few will go.  Please do not disapoint her! 

Everyone is welcome. Meals will be from 4-6pm but if you don’t want to purchase a meal, there will be activities following. The event is being ran as a fundraiser for her (as she will not be able to work for a very long time) but also will have Be The Match on hand, the corn hole tournament is to benefit the James and we also will be doing a karoke contest to help two other families in Putnam County who are battling blood cancers.  This is very important to Jen and I don’t want her to be disapointed. She has had so much disapointment in the last several months, surely she deserves to feel some joy and love.
For more about her party on July 22, please email me at . I will be happy to send you information. 

Day +71 – Attempts To Juggle

I’ve spent the better part of my adult life juggling and at times I believe I mastered the art of it. No, I don’t throw balls and other objects in the air all at once, but what I do juggle is my nonstop brain.

It comes as no surprise to me, or probably anyone else, I’ve explored many kinds of careers and taken college courses for several degrees. I also have explored many self owned businesses with the longest running one being photography.  But my unsettled mind still looks constantly at more things to juggle. My life is in constant chaos. So when Jen was diagnosed with leukemia, I had to question my ability to manage the enormity of it and why God would think I am capable of such huge obstacle.

Most days, I finally feel I’ve learned to use cruise control and am able to keep life in balance. I get excited to find a few hours where Jen feels well and we can enjoy life. And I get my hopes up that we are on our way to her being healed.  I think to myself, finally at +71, we are over the hump. I start to plan the hour, the day, the week.  

But then this life I had once juggled so well, comes crashing down and I don’t know if I turn around or push forward  with the plan. Last night, Jen had a great evening. We got dinner together and I enjoyed seeing her be my Jen again. I went to bed with a smile on my face thinking today’s drive back to home will go well. 

About 30 minutes into the drive,  Jen becomes very quiet, 30 minutes later her expression changes and by the time we get to Lima, I wonder if I need to turn back around. But then all the balls I had tossed into the air and placed ever so carefully would need to be repositioned. I start going through all the balls I need to juggle and how I can keep them in the air. Today it went like this….”Randy is on nights, the last paycheck missing hours from missed work. Matt is leaving for his two week summer drill tomorrow. And Jess is giving blood after work and needs to be home to catch up on her housework and life.  I have no options for who will stay with the dogs over night so hopefully this will pass.”

But what if it doesnt. What if we get home and things get worse. What if my choice to continue driving home ends up being the wrong one.  The truth is, I have lost control. The balls I have been trying to juggle has become once again too much. I can only wonder if tomorrow will be better, or next week, or next year.  Some never get better but fight through pain and set backs 90% of the time.  Is this what our life will be? A few hours of peace, followed by a constant cancer dance?  

Day +70 – 10 Weeks of Tweeking 

Leukemia,  with unfavorable chromosome translocation is definitely a test of patience,  resilience,  and faith in God. About the time I feel we have passed the test, we encounter a new problem to work out. Day +70, weeks ago, seemed like a day where maybe life would feel normal again, and it does at times but it is still very much a struggle.

Between clinic appointments,  Jen and I have traveled back home to spend time. But because she tires so quickly, we travel to and from usually on different days. Her next appointment is on Friday afternoon and the current plan is to drive home tomorrow morning  and return on Friday morning to Columbus. Then sleep here in Columbus before traveling back on Saturday morning.  We then stay until Monday evening and drive back to Columbus for a Tuesday morning appointment.  This makes for a busy week of coming and going and resting in between.

Last weekend, we had planned to go  home on Thursday evening but Jen wasn’t sure she wanted to go because she had developed some pain over the course of the last couple weeks. They gave her a steroid shot in the clinic on Thursday morning and it took until later Thursday evening before she was feeling better. 

She slept most of Friday away and much of Saturday. She had planned to go to a friend’s wedding for awhile on Saturday but never felt like she would be able to make the drive into Lima, go to reception for a short while, and drive back. Instead she was able to go to her cousin’s graduation party outside Ottoville for a short time before coming home to collapse in bed. 

Jess spent most of the weekend with us and then on Sunday, Matt came home and we all were home under the same roof at the same time for the first time since early March. It was the best!

But on Monday by the time we got back to Columbus,  Jen was feeling fatigued and an increase of blood in her nose took us to ER early evening. Of course nothing happens fast at the ER, and by 3am, they decided a high potassium level and a racing heart episode,  they were going to admit her.  So I came back to hotel and slept for about 7 hours. Jen messaged me at 11am and said they were sending her home, so I went back. She was still in the ER, had received fluids and platelets,  and decided to release her. We sat for the next 3 hours waiting, watching her nose bleed (for some unknown reason), and finally pulling out of parking garage mid afternoon.

We are still confused about higher potassium levels, and nose bleeds that got worse after receiving platelets but after a long nap, she felt much better. We treated ourselves to some cheesecake and called it a day. 

I’ve decided AML is disease that requires constant tweeking. If you think you can plan anything days in advance, you are mistaken. And if you think you are now over the hump,  think again. The good news in all this is her counts are holding for longer periods with transfusions coming less often and her white counts not dipping as fast as they were a week ago. She still needs a shot of neupengen to boost her WC every few days, but it feels ever so slightly we are headed in the right direction. Tweeking will be a common theme for most likely months to come. 

Day +62  – Good Days & Daydreamers 

I knew when I went this morning to the hospital it was going to be a good day. Not just a good day, a great day! Jennifer downed a bowl of cereal without much hesitation.  Eating is always a good sign of feeling better. Not too much before 10am, her doctors showed up with the news that Jen could leave the hospital. And by 11am, we were driving away from South Canon Garage.  

We weren’t at the hotel for more than an hour and already Jen was looking to do something.  Another good sign. We decided to go down to the Short North and enjoy this beautiful Memorial Day. We spent a good couple hours window shopping, as many shops were closed for the holiday.  I got my workout pushing a wheel chair. I had to learn how to avoid bumps in the sidewalk.  Luckily, Jen survived my wheelchair workout. It really isn’t an easy job when you stand 5 feet nothing and can’t see much over top the chair. 

After the Short North,  we drove down to German Village to enjoy the brick streets and picturesque houses. Jen became tired quickly and so we came back to the hotel to watch the Indians on TV and relax.

The day was just what I have been missing terribly. Nearly every outing thus far had left me worrying a great deal. The look on her face usually tells me she isn’t enjoying herself, but today that face didn’t show itself until after our drive through German. Village. For some this may not seem like much, but to us it was so uplifting.

Now as she rest,  I sit here day dreaming.  I haven’t given myself much permission to daydream. Especially not daydreams that include Jen. When I had, it had always left me feeling sad. But not today. Today, I’m daydreaming about the future, Jen’s future. Jen has such a passion for so many things.  And so I daydream about her doing the things she use to talk much about. 

The girl would love to travel. To Africa to see the elephants,  to Italy to see the art. She would love to spend days on the beach or near a mountain or a river, drawing or painting the day away. Or working in her quaint little shop, that has a loft,  painting or restoring a piece of furniture or maybe building a new piece with her dad. Or maybe sit by a big picture window  watching the rain as she designs something in photshop on her dream computer, a Microsoft Surface Studio. Or maybe head to Waco, Texas and work with Jo-Ann from Fixer Upper on HGTV.

Jennifer is definitely my daughter because she has so many paths she would love to pursue. And for the last several months, I quit thinking about those daydreams.  Until today. Today was a good day. A day for daydreams. 

Day +61 Give Blood – Receive Blood

So here we are at the James. Jen’s fourth readmission since receiving her transplant.  Readmissions are common but each time she has been able to stay out of the hospital longer. 

So far her doctors  have discovered she was dehydrated (most likely from getting sick) and she needed red blood cells (hemoglobin). Both can explain her fatique and overall weakness.  Her hemoglobin count was at 6.4 which under 7 gets her a transfusion. 

Again because someone took the time to give blood, Jennifer is able to receive it today. Maybe even someone at the Parish Hall in Ottoville last week. Whomever it was, thank you for giving. Blood transfusions have become vital for Jen to get well. 

Before Jennifer got sick, she gave blood many times. Now she is in need of blood and we are learning how important giving blood has become. I hope no one I love has to ever learn the way we have how vital it is. But please, give blood so someone can receive blood. 

Day +60 Counting Blessings

As I drove on 117 headed towards Columbus this evening, I found myself wanting to be angry. It seems so unfair that we only got two days at home before having to return to Columbus.  But then, I remembered the one thing I have told myself many times. If I  focus on all the things to complain about, that is all I would get done and it wouldn’t change anything, except making me even more angry. But if I focus on the blessings,  I will be able to face another day. 

Yes, Jennifer and I had to return to Columbus.  (She was feeling poor, with lots of nausea, stomach pain, and over all fatique. She also had an increase in blood in her nose which can point to needing some platelets. ) But although the weekend was cut short, here is a list of all the blessings we shared over the last 48 hours.

  1. We got to see Jessica, Randy, Jen’s grandparents, Rick and Lori, Jen Miller, neighbors Sparky and Doris Brinkman and The Heitmeyers who drew a beautiful Welcome Home message on the driveway.
  2. Jennifer and I got to spend time with the dogs 
  3. We had a meal cooked on the grill.
  4. I was able to get my hair cut thanks to Heather at The Gentry.
  5. Jennifer got a new mattress for her bed thanks to Ottoville Hardware.
  6. I had enough time to nearly finish all the invitations for Jennifer’s Welcome Home/ Survivor Party with Be The Match.
  7. I got to eat a couple pieces of the wonderful apple cake my mom baked and brought over.
  8. Jennifer and I both got to sleep in our own beds two nights in a row.

That’s a lot of blessings.  And although we hoped for more days at home, we know this is a process and it is going to be small steps forward for awhile. As much as we want life to be normal again, God has us on this path. There are still lessons to be learned. I told Jen, that maybe it isn’t our lesson to learn but someone else’s through us. Her response to that was “well they better ‘getter done’ because I’m exhausted.”  So if it is you who still needs their come to God moment, ‘getter done’ because Jen and I are ready to live life again. 

Day +58 – Home

This morning Jen had an appointment in the clinic. The visit was a great one for three reasons.

1. They no longer detect the CMV virus in Jen so she no longer has to take a med that drives down her counts.

2. Ever since they switched Jen’s anti fungal med, she has struggled with stomach pain and nausea. So she is switching back to the previous med. Although the other med caused her occasional hallucinations,  we decided that is easier tolerated than the latter.

3. Jen got permission to go home for a trial run. And so after a long nap, we packed up the car (packing for her is more complicated than packing for an infant) and headed home.

God is good! 

Day +57 –  You Have Made A Difference 

Like most evenings these days, tonight Jen and I are laying on the bed watching the Cleveland Indians.  She has been out of the hospital almost a full week but it hasn’t been easy. She has been back for  two clinic appointments and one transfusion.  Calls to clinic have been frequent and most days she spends much of her time curled up in bed. Not quite life in the city her and I had dreamed of. But this is what we expected but had hoped for more. 

Tomorrow morning,  she has another clinic appointment.  I plan to ask about one of the meds they recently started her on. Nearly every day since she started on this med, she has complained about body pain and stomach cramping. They had switched her to this drug because the other they believed was causing her to hallucinate from time to time. Currently,  she prefers the occasional hallucinations to this.

Since she has been spending so much time sleeping, I have had a lot of time to myself. Too much time. I have been reflecting a great deal about the last six plus months.  I still try to wrap my head around the diagnosis and how much has changed for her and the rest of us. I also have reflected on how much I’ve learned about leukemia,  about Jen, and about my faith.  I have witness so much generosity in many.  Even from people whom we have never met, including a young man who was willing to save Jen’s life with giving her life saving bone marrow. But also people who donate blood regularly.  I wonder if they know the difference they have made. 

But I also think about those I have become disappointed in. A long time ago, as our grandparents and  Randy’s parents passed away, Randy spoke about truely being tested in life. And in that test, you learn what you are capable of, who you can rely on, and who comes up short. Unfortunately there will be those that disapoint us. It’s funny how we can have hundreds of examples of generosity and thoughtfulness, but a few who lack are the ones we focus on.

With that in mind, I was talking to someone who is always offering up prayers for Jen and the rest of us. She asked me what prayer I felt needed answered.  I told her my ability to release the disapointment and sadness I carry with me daily. I want my heart to feel and my eyes to see only that which I am blessed with. Instead of praying to find something in someone there isnt, I want to focus on seeing the blessings I have found in others. Just as Jen must heal from her cancer, I must heal from the pain I have found in this journey. 

So I want to finish with this. Daily so many have given me hope. So many praying. So many in their thoughts daily. So many have rallied together with us. So many have been with us since day one. I have filled a shoe box with cards but also have received so many messages of love. I want you to know, you have made a difference.