Day +197 – 11 months Since Diagnosis

FB_IMG_1507736326663Jennifer dressed  literally  from head to foot today in her Indians attire, ready for game five against the Yankees tonight. But first we had to get a couple pesky appointments in Columbus out of the way before game time.

We left before the sun was fully up to get to her eye doctor appointment at 945. Of course, as all appointments go, they were running behind. The beginning of the appointment was going well with very little eye dryness from GVHD and little, if any changes in vision. And then, the doctor found something that would change the course of our day.

Jen has swelling in both optical nerves and several hematomas behind the eyes. This can explain the spots in her eye sight (blood leaking into her vision) and her headaches. The eye doctor sent her immediately to the ER for further evaluation.

Upon arriving here, she has had an iv hooked up and recently came back from MRI. It  has been decided she will spend the night as they figure out the reason for these things.  Of course, some of the possible answers are frightening,  so the waiting is hard. But also, this place is so full of bad memories,  it is the last place we want to be.

I ask for a couple things as we sit and wait. 1. Prayers of course. We have felt the power of prayer. 2. To remember this is such a hard place to be for jen and myself. And for Randy, Jess, and Matt as they wait anxiously for answers back at home. It is a lonely and  a scary place to be. When someone reaches out to Jen or the rest of us, it often comes as we are feeling so helpless. And it is so appreciated.

Hopefully this is a short stay with positive outcomes. And hopefully the Indians win tonight and we can enjoy the rest of this post season from home.

Six Months – Day +182

I have been humbled in ways I never knew was possible.  When life took a turn for the worse nearly 11 months ago, I was not sure how possibly this could happen to Jen. Her gentle soul, her love for everyone was reason enough to not have to face the cancer that could end her life.

Why? I asked myself that many of times. I would be lying if I said I don’t still ask myself why. But some days, I see the why. God has brought Jen and myself down a path in which we would grow in so many ways.

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To begin with, we have learned how one can be so completely generous without needing a thank you. A wonderful, unselfish 24 year old man gave Jen the gift of life. He didn’t do it for praise. He didn’t do it for money. He gave his bone marrow to give someone a chance at life and never asked for anything in return. Although I have written a thank you to him, and I hope he has received it, he has not made any contact back. I don’t know if he wishes to stay anonymous, however tomorrow will be six months since Jen has received his marrow and was given the chance to heal and live.

*Public Service announcement – You too can give someone the gift of life by getting on the registry to become a bone marrow donor. Visit www.bethematch.org to find out more.*

I also have learned how much there is to be thankful for in life. We are so blessed by so much and often we can’t see it as we are too distracted by those things we choose to complain about. On Saturday, I photographed my first wedding of the season. It was very hot for September. I sweated through my clothes and I was completely soaked only a couple hours into the day. In the past, this would be cause for me to complain. But instead, I knew I was blessed as I was able to work, make some money, and spend the day without fear of leaving Jen at home. I heard many complain about the heat. I heard many complain about many things. And I so wish, they could find a way to see the blessings without ever having to go through what we have in the last eleven months.

I also am learning to not let others define me. Popularity and my name has never been spoke in the same sentence. And there are days, especially when attempting to run my own business, popularity was important to me. To have someone choose me, as a friend or as a photographer, meant I was accepted. And when I wasn’t chose as those, I felt rejected. Often, when harsh word or actions came my direction, I would allow that to define me. And although it is difficult some days, I am learning to tell myself that God and God alone can judge me.

There had been times over the last several months, even while I watched my dear daughter fight cancer,  we had been judged.  And as much I wish I could  have protected Jen from these comments and actions, I am so blessed these moments occurred. Through it, I have had to find how to rebuild myself up, build Jen up, and not allow those things determine who we are or how we feel about ourselves.

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The doctors had told us to expect to see some of Jen’s strength to return at the six month mark. And that has been the case. In the last couple weeks, Jen has been able to attend two Cleveland Indians baseball games, gone to a flea market, and has painted my coffee table and a portrait of her cat Kodak. Her infectious smile has returned and her love for life has been restored. And although the battle continues, and lasting side effects still have to be addressed, to see the part of Jen that has been missing for so long, is like winning the lottery.  I am walking on sunshine!

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.