Day +140 Praise Jesus

Today, Jen had an appt at the hematology clinic in Columbus. She hadn’t been to a clinic appt. for three weeks so we were excited to see what changes we would see. To start, Jen will once again be decreasing the amount of meds that protect her from developing GVHD. As this medicine is decreased, Jen will experience less tremors and hopefully will be able to drive again. At the rate of current decrease, we can expect to be completely off of the medication in about two months.

Also since Jen’s platelets have come up, she will start taking a blood thinner. She needs to do this because she had blood clots and a pulmonary embolism. Although it is not expected she will develop more, this is protocol for anyone who has had one. Hopefully in a few months, she can stop taking tbis medication.

Jen also starts aquatic therapy tomorrow.  She has had a great deal of muscle loss and has been having a great deal of back pain. Hopefully the therapy will help her get stronger and the pain will subside.  She will have an mri of her back to be sure there isn’t something they are missing so we will make a trip to Columbus for that sometime in the next couple weeks

Now for the best news!

Praise Jesus! We prayed and He has answered our prayers.  At this time,  the doctors have told us Jen’s counts (other then her platelets being slightly low) have rebounded. Her white Count, ANC,  and hemoglobin are all normal.  This means the transplant has worked and means even less blood draws. Dr Minns also told us they do not see any reason to have any more biopsies as long as Jen shows no symptoms of low counts or her counts fall.

As Jen moves forward, the focus will be on continue decrease of medications, increasing her strength,  and emotional support. Jen currently appears to be suffering from some PTSD. This is quite common for AML patients, especially when they have had a ton of complications along the way like Jen. But we hope as time passes, Jen will also begin to feel strong emotionally once again. For now, we can support her by listening and by letting her know we are here for her. It was also suggested she spend time doing things she enjoys so be sure to invite her to the movies, to dinner,  to paint, etc. She may take time to feel well enough to go for long periods but in time,  God willing, she will inprove here too.

 

Day +133

It has been awhile since I have updated on the blog, so this may be a long(er) post. Over the course of the last 20+ days life here has had slow changes.  Now that the benefit is over, things are a bit more relaxed and the the piles of things for the it diminished. There were however some prizes that were not selected on the prize wall, so sometime in the coming weeks the prize wall will make a reappearance.  With so many businesses so generous, we want to make sure we gift them to give Jen the most reward. But for now, we are enjoying a little down time from world of benefits.

Jen had a local hematology appointment yesterday to check her counts.  Her counts have been on the up swing for a couple of weeks and yesterday her numbers were the best they have been since she got sick last fall.  I don’t think Jen believes it yet, as she still feels very ill most days.  Fatigue, weakness, and pain are daily complaints and some days I feel frustrated in how to help.

Jen saw an orthopedic doctor last week to see if there is a source to her continued back pain.  Early results say she is suffering from substantial muscle loss due to no activity for so long.  The only thing she can do is to work through this pain through physical therapy.  They ordered aquatic therapy but it will be another week before she can get that started.  Along with pain comes nausea and fatigue. There is no magic pill or cure for all this. Time and prayer and pushing through it is all that can be done.  This makes me often feel helpless as endless tears are shed daily.

If there ever has been a time I have felt ill-equipped  for the job I am to perform, it is now.  The smiles Jen was able to share at the beginning, aren’t as frequent. And despite her positive numbers, the cancer has left behind a young lady who suffers daily both emotionally and physically. I have told her many times she will get there….but  at this time, she isn’t buying it. The PTSD from leukemia is far too real.

In addition to the stresses of leukemia, the stresses of our pet family has also been difficult. A couple weeks ago, Jen had to put down her cat of sixteen years. He was in renal failure and could no longer keep food down. In addition to losing Kodak, my dear dog Molly has had no improvement. Later today, she has a vet appointment in which I expect will be coming home without her.  She no longer can lift her back end and she spends her days laying on her side on a cushion. I bring food and water to her and after I sit her up, she takes a long drink and a few bites and goes back to laying down. My heart is broken but I don’t want her to suffer any longer.

Rally Together With Jennifer and Be The Match was a beautiful day.  There were 15 people who signed up to be on the donor list, which means 15 more options for registry to look at when someone is needing bone marrow. Hopefully, when we are able to do another event with Be The Match we can sign up twice as many!  We also were blessed with nearly 200 guest to help celebrate Jen’s remission.  Jen spent much of the day outdoors and enjoyed visiting with people she hasn’t seen much of lately.  Thank you to all who came.  Also we raffled off the $3000 Disney Cash.  My dear high school friend Beth Kortokrax won!   Beth’s older brother Rob died from leukemia a few years back so it felt so perfect that she won.  Her two youngest children had saved money up to buy the tickets.  Congrats to Beth and her family!

We had so many generous businesses help us and I will be making a list of all those in a future blog.  It all would not have been possible without their help.  I hope for life to get less complicated, less trips to Columbus, and Jen to get strong enough so she and I can return back to our normal lives soon.  And when we do, I have a ton of paying it forward to do.

Day +110 The Other Side of Cancer

The ugly word of cancer many have experienced.  Some fights long,  some short. Some with positive outcomes,  some not. Cancer  has changed our entire lives,   and it has become easy to feel alone. We are now on the other side of cancer. 

We start days slow now. The rush is not tolerated well by Jen. If the day has an early start, the afternoon becomes slowed down. We seldom can plan anything too far in advance because likelyhood of canceling is high. The moment we think we have a completely free day, we are often met with a complication that changes that. Runs to the doctors, ER, or pharmacy happen several times a week. And plans to the store, to get laundry done, or maybe a church social change on a dime.

We watch on social media our friends and family take vacations, go to work, and celebrate holidays. We dream when we can do the same. Going out to eat and Jen feeling well from start to end is an accomplishment.  The drive to Lima seems long for her…. the drive to Columbus she dreads. 

As we plan Jen’s party, we have forgotten the world has not stopped. Plans for vacations, family weddings,  and other events have filled up the calendar of many of those we invited. And it’s hard to not feel alone or disapointed. But we are on the other side of cancer and we can’t expect those who arent here with us to understand.  It is why the words ‘cancer sucks’ is said daily here. 

I have promised myself to never forget what this side of cancer feels like.  And to remember those who  walk this after us, know they can count on me. I promise to do my best to ring their doorbell with dinner or to ask if I can help in any way. I promise frequent messages to let them know I think of them often. And when I close my eyes at night, I remind myself how blessed I am to be back on the easier side of cancer.  I wish for others to know, without ever having been on this side, they are blessed. Do not take for granted vacations, Monday mornings, and casual drives to Lima. Remember celebrations, church socials, and lazy summer days are fleeting. 

Day +106

Yesterday Jen had a clinic appointment in Columbus. For the last several months, Jen has had low white count,  low platelet counts, and stable but low red blood counts.  The reason for the low counts were not only because of radiation and chemotherapy,  but also medications that are needed to help ward off viruses and her rejecting the bone marrow. 

The low platelets have resulted in many transfusions and the low white counts means she needs injections of neupengen several times a week. The transfusions required many trips to the ER and the clinic. And injections often give her bone pain. This has been very exhausting over the last several weeks on her and on all of us.

Yesterday at her clinic appointment we learned they no longer detect the CMV virus in her and if the blood test yesterday still shows no virus, she will be able to quit taking the medication the lowers those levels.  They also are now in a safe place to have her quit taking one of the meds she needed to keep her fron rejecting the marrow.  Both of these medications are immune suppressents which means they drive down all her counts.  By stopping them, her marrow hopefully will be able to start growing and transfusions and injections can be stopped.  This hopefully will make her start feeling stronger and less tired and fatiqued. 

We also will be able to only go to columbus every two weeks for clinic appointments and have maintenance cbc blood test done in Lima on the off weeks. This gives us more time at home to get stronger. We are thrilled.

Jen’s Survivor party is now a week and a half away. A lot of planning and love has gone into planning this for Jen. And we are looking forward to sharing a day of love and celebration with her. We welcome everyone to join us and give Jen a very special day she will always remember.  She has been through so much in eight months. She faced cancer, pneumonia,  chemo, radiation,  blood clots, and so much more. She has shown us so much strength. And what better way to celebrate than to show her she has been in our thoughts and prayers through it all. 

And finally, today was a difficult day for the Honigford family, especially Jen. Today we put down Jen’s cat of 16 years. Kodak’s health had been failing for some time but Jen couldn’t bring herself to put him down when she was preparing for her transplant.  Today, she braved saying goodbye and cried as he passed. He was buried near her dog Grace back near Randy’s parents old house this evening. 

Day +100 Future Looking Bright

I haven’t updated the blog in several days but what better day than +100. In the post bone marrow transplant world,  +100 is a big milestone.  Mostly because many are starting to see some counts stabilize and first bone marrow biopsy is done at this point. Jen’s hemoglobin  (or red blood count) has been consistently close to normal for a couple weeks but she is still receiving transfusions of platelets almost weekly and neupengen shots two to three times a week to boost her white count. Low platelets causes her to bruise easily and gives her sinus bleeds and a low white count makes her at risk for infections, so we keep on top of these two things consistently. Jen had a biopsy many weeks ago and there was no sign of cancer so the doctors decided to wait until her counts have stabilized more before repeating.

  A  couple weeks back we made three ER trips in eight days. It was quite exhausting. Even if all she needed was a transfusion,  if we took her to Lima, she would be transported to the James and then soon after released.  This was nearly too much for all of us, so we requested she have her Lima hematologist check her counts later in the week with him being able to order a transfusion if needed. Her James doctors then see her at the beginning of each week and hopefully with the two working together,  we can make less ER trips.
Jen still fights lots of fatique, tremors, and frequent headaches. She also experiences bone pain almost daily. Much of this has to do with her body recovering but also some of the medications she takes causes many issues.  Today she will stop taking predizone,  which tends to increase her risk for the CMV virus. When the CMV levels elevate, she is put on a medication that drives her counts down. So in theory, no predizone means her counts should start to move up.

We asked her doctors a list of questions today, from her working on refinishing furniture again to swimming to sitting near a campfire.  Although she is not able to fully enjoy many of these things yet, the fact she is wanting to is a positive sign she is feeling better and is looking forward.

We also in planning for her party on July 22, decided we wanted to spread some hope to others at the James. Today we delivered paper flowers (the real things are forbidden at the James) to two patients including meteorologist Chris Bradley who was diagnosed with AML in March. He unfortunately has not been able to get to remission and move forward to transplant.  Our heart breaks for him and his family. The hope we have with Jen reaching day +100, we want to spread to those who may feel hopeless right now. 

+100 brings us to a place of thanks as we know this milestone isn’t always reached by others. As we move forward, day +200 we know is within reach and we are fighting to get Jen there. 

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 rallytogetherwithjen@gmail.com . 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.