Today is a huge milestone for me. Today marks 100 days post transplant. I can’t believe I’ve made it to 100 days. There are so many who don’t and many who don’t get the chance to try.
Please if you haven’t already become a donor with http://www.bethematch.org You will save a life. Also make sure to donate blood, platelets, or plasma for those are really needed too.
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.
On Saturday, July 22 we will be celebrating Jennifer being cancer free. We are looking for local talent to participate in a karaoke contest. If you or someone you know think you have what it takes to win, please contact us at rallytogetherwithjen@gmail.com
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.
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.
For more about her party on July 22, please email me at rallytogetherwithjen@gmail.com . I will be happy to send you information.
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?
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.
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.
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.
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.
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.
Rally Together With Jennifer 