Monthly Archives: September 2014

Coming Home!

I can hear that song, “I’m Coming Home, Coming Home. Tell the world I’m coming home.”

WHAT a journey! Sitting in the Dr’s office last Thursday and telling the doctor (our primary and also the head of the group) all that had transpired while he was on vacation and which parts upset us the most… He validated it all. He said there was nothing more I could have done as Mark’s caregiver. (What a pickle it is to be trying to take the best care you can of people in two different spots-that can potentially be an hour or more apart from each other, in a situation that normally wouldn’t be so bad, because at least everyone would be in one place.)

Anyway, at the end of our visit, I ask, “So, can we put it on your radar that we would like to take Mark  home soon. Can we start thinking about that?”  “Yes”, he answers, “He can go home this weekend.” “WHAT? No, he can’t. My house is a wreck!” was my response. (Everything still needs to stay VERY clean and he still needs that 24/7 caregiver while he is inside that 100 day post transplant process.) “Ok,” he says, “Then he can go home as soon as you have the house ready.”

No pressure. You know that moment when you just finished the big project, or got done with basketball season or a tough semester of classes and you just all of a sudden have no energy and get sick? That’s how I felt. I thought, I am exhausted and I have no rest in sight if I want to get Mark home quickly.

I knew I needed to pace myself if I wanted to finish this race strong. So, I got some rest Thursday. By Friday, I had checked the mail and someone from Cleveland anonymously gave some cash (yes, they mailed cash from Cleveland- not check.) And then right about the same time, a sweet friend called and said she was having a lady who cleaned for her come and deep clean our main level. She told me I had been through enough, she wanted to help take something off my plate. AMAZING! God continues to meet our needs through wonderful people! Now, I am able to get the carpets professionally cleaned as well as the main living area of the house which leaves me and the girls, the bedrooms, bathrooms and some repair work.  Honestly, it doesn’t sound too bad as I write it- but you have to remember that I missed my usual two times a year of organizing and deep cleaning through this ordeal.

The journey is not over, but this next part seems so much easier than the past five months was. Mark will be home. He can be more social.I can be more social. We can both be more involved than we have in months with our daughters. Heck, I might actually be able to make it to the dance studio to teach a little again!

Day 76 today means that 100 days is 24 days away. Thankfully, my sister-in-law is here right now. She has a huge heart and has been so ready to pour herself into our situation. She is staying a little longer to help and she and my aunt (who called randomly one day to say my uncle thought God was telling him we needed her to come out) is overlapping her time and then will be here a few extra days which will bring us to day 92. (During the time when I have both of them here, I plan to rest as much as possible and take care of myself more than I have been able to the past five and a half months.) A dear friend who was originally going to come can’t because of her own personal health issues – but even so, we are being taken care of, completely. Again, AMAZING!!

The doctors will check on Mark twice a week still and then after 100 days we should be going to once a week and so on. They will still sample his bone marrow (the six he has already had are not enough) at 90 days and then potentially at 6 months and a year. The doctors say that when he gets to his 2 year mark, we can pretty much rest assured that the AML won’t return. We are counting on that!

Our prayers for now? That the AML won’t return and that his body will stay strong and unaffected by all the chemicals and drugs they have used and continue to use in an effort to kill cancer and all the stem cells to accept his body. All of these drugs have risks and harmful side effects and they will continue to watch his body closely concerning that. As well as continued monitoring for Graft V Host Disease.

Mark still won’t be driving for some time because of the medications he is taking. So, even after the 24/7 “Caregiver” time ends, I will still be needed as “Driver”. But, more and more freedoms for all of us are right around the corner! I feel like just breathing and relaxing and getting my workouts in a bit more regularly are finally in sight!

Personally, this has been the hardest road of my life and I see the end ahead. As I reflect back, I know some have asked where my family has been and I say to that-my family has been with me every step of the way!! Phone calls, texts, lots of prayers, cards, money. People should never judge something they know nothing about-but unfortunately some do. Also, I realized through this that although some people are truly able to set themselves aside to truly care for someone and allow someone to go through something like this, staying by their side, again, without passing judgment, is something not everyone is capable of.  I am thankful to have SO MANY in my life that I can be real with-at my worst AND at my best- and be loved regardless. THANK YOU!!!!!

A few people I know have played the role I have and they KNOW what this takes and they have been one of the biggest blessings to me. This is how life works. You go through really bad stuff- so bad that you think no possible good could ever come of it until you realize that what you went through gives you exactly what it takes to have that extra dose of compassion, patience, courage and love to help another person get through their worst and most difficult time. THANK YOU to those who have been “the caregiver” and have helped me to be one. THANK YOU to those who have lost and suffered and have been there  as some of our biggest supports!

SOOOOOO many family and friends have stepped up in big and small ways with support and love in all shapes and sizes and all kinds of ways and it has been nothing short of REMARKABLE! THANK YOU!!!!!!!!!

If I were comparing this to hiking a mountain, this would have to be the road traveling back down, I think. Although, that’s actually the hardest part for me-it kills my knees! But, you have more oxygen and you are heading back toward more level ground…. hmmmm….

GOD BLESS YOU! Don’t leave, but please, breathe a little easier with us and watch those knees as you head back down the hill! 😉

 

 

 

 

“You Will Have Trouble”

One thing Jesus made abundantly clear is this: He actually told his disciples, “In this world you WILL have trouble.” He didn’t say could or might-he said WILL. Then he said, “But, take heart, I have overcome the world.”

He also said he was going to prepare a place for us and that the Holy Spirit would be with us-able to be with each person anywhere everywhere all the time. That was actually better than it had been before when God would go from place to place or person to person and when Jesus was with his disciples or the woman at the well… but wasn’t able to be everywhere with everyone all the time.

We are also told to “take your thoughts captive” and “focus on what is good, true, noble, right…”

This Biblical teaching goes hand in hand with something we recently discussed in my Holistic Health class as well as my Diversity in Health and Illness class and what Mark and I recently discussed with the psychologist at the hospital called Cognitive Therapy.

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The events that happen in life are full of highs and lows. This journey we are on is a series of events. The way we THINK – the meaning we assign the events-determines how we end  up responding. The perspective we take-choosing to focus on only the small little down episode or only on the high episodes, or the whole picture that has both highs and lows-will determine our ability to deal with things in a more healthy way.

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For years, I have done this and not had a name to give to it, really. Yes, I have bad days, especially when many negative things are being thrown my way at once, but I don’t stay there. Those negatives are not allowed to take that much time effort or energy in my mind. If I were unable to change that thought process on my own, I would indeed seek professional help.

I say all of this to tell you that-although last week was pretty miserable, we are having a good week this week! Mark has pain medicine and is back on the Beclothesamone for GVHD and is smiling a TON and walking around and eating and even using his therabands to rebuild muscle!

I am in a much better place as I have let go of the negatives and I know a lot of people reached out to me after reading my last blog and still are to make sure I am ok- and I am ok  and I’m back to my normal thought processes and that suit me just fine! 🙂 THANK YOU for loving me (and us) through the highs and lows and everything in between.

Things to pray about:

His Host v Graft Disease stays in check and improves, we find out the cause behind his extreme swelling in his abdomen and lower body, (They will do an echocardiogram or his heart and a Cat Scan of his abdomen again Monday and took blood today to test heart function.)

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Today, he had his 6th bone marrow biopsy and we should begin getting results from that in a bout one week and have the most thorough knowledge within two weeks. This was the first time that I actually sat and watched the entire process. WOW! It was truly amazing. They take something that looks like the end of a drill bit/screwdriver after numbing him with both a topical and a  liquid injection, and they screw it in manually as they ask him (yes, he stays awake) how things are feeling. They then pull out some blood. Next, they attach a machine portion to the tool sticking into his hip bone and they drill down (it takes seconds at most) into his hip bone with that. It pulls out of his bone and body and then they extract out of the middle of the drill bit/screw driver type attachment, his actual bone marrow. Crazy, but next time, I may take some pictures.

In the midst of our trials, someone very near and dear to Mark is in trouble with their health and is needing to be taken to a hospital in Columbus as she is bleeding on her brain-his Aunt Joanna. She has been much like a second mom to Mark and his sister, so please pray as she and the family go through this.

There is another family I was just connected to in Columbus by my aunt. The young dad (26) was just diagnosed with Leukemia after thinking he had a herniated disc. His wife had just undergone an Illeostomy from Chron’s Disease and their baby daughter had been born with one kidney which had gone septic.

So, yes, in this life you WILL have trouble…. But we also have each other and we have a God who does not leave us through the trouble. <3

Thank you for all the love and reaching out in the struggles. It is appreciated more than you will ever know and much more than words can possibly describe!

 

The Struggle is SO Real

This past week was horrid. Lots of mix-ups, including miscommunications at the hospital and among the doctors of our clinic. I ended up on the phone with our Allo Nurse for about an hour and a half yesterday after I sent an email to our doctor (who read it on vacation and asked her to please call me) about how things had been unacceptable as of late.

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It has also proven to be the most taxing ride our bodies, minds and souls have ever taken. Literally, Mark got super sick on Monday April 14th… today is the 16th of September!!! If anyone asked me if I thought we could last this long when it all started, I would have guessed- no. This has been five solid months of uncertainty, pain, heartache, grieving, surrendering to a life completely different from your intentions and plans and trying the entire time to have some sort of acceptance and some sort of strong fight as well as the ability to continually go with the flow and not allow yourself to succumb to the negativity and the suckyness of the situation. At times, I have run hard or done some kickboxing to fight through my emotions. Many times, I close my eyes and remember how it felt to allow myself to float in the waters of Belize as we snorkeled. Most of the time, though, my body seems to be struggling just to get through a day, let alone add to it any type of real workout.

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Until you come up against this kind of battle yourself, a life and death situation that lingers, I feel like it’s impossible to imagine all that goes along with it.

It gets more and more difficult for me to take care of the everyday little things in life- laundry, changing light bulbs, cooking, cleaning… these are all demands that by the time I come home to spend time with my girls seem so meaningless…. unimportant…. I ask myself, is this really what I want to spend the little energy I have left on?  I have to remind myself that my girls need a home that is warm and inviting and letting them know that they are cared for. I do what I feel I need to do and then I feel like collapsing.

Sunday, I spent about 2 1/2 hours bawling in bed. I literally said, “I feel like I want to quit eating and die a slow death.”  If I had not had some friends reach out to me, I may have called the doctor yesterday and asked for some medication. (Y’all know I don’t take medication!) Yesterday I went to Denver and Mark fell apart in my arms twice. Ladies and gents, this has gotten to this point. We need held up. The psychologist has told us we need to be in this boat together riding the hard waves of this great storm. If our family separates and we each stay in our own boat, we are just going to drift apart and ride the waves alone. So, we are riding together. We are having difficult talks, we are being honest with each other about our emotions and what is happening as we go through this as individuals and as a family.

It’s weird, because we don’t at all expect people to get it unless they have lived it and to try to find words to explain it all just doesn’t work. There really are no words that can express the difficulty of this.  I wouldn’t wish anything like this on my worst enemy, I can tell you that. And I try to remind myself, that when this is over, we will be able to use what we have been through to help others. I look back and remember how God has provided all along and I remind myself to trust Him still and that He is always good and will take care of us.

This battle has been long and hard, and it’s not over my friends. I was raised not to make more work for other people and so it is hard to feel like that keeps happening. My family keeps needing…We got the good word that cancer was gone last Friday, only to face the worst week we have had so far. At least with the diagnosis in the beginning, although unexpected, we had a definite plan of attack and we knew what to expect in many ways…

At this point, no one really knows what to expect. The doctor’s analogy is that it’s like being in a war and going through a mine field. You never know what you will step on at this point….

Mark is having what looked like Graft V. Host Disease from his endoscopies. His intestines are VERY fragile. He is in a TON of pain! Stem Cell transplants are different from other transplants in that they are not rejected by the body, rather, the stem cells reject the body and fight it as they adjust to their new home. It’s not all bad that this happens as it also means that they will attack cancer cells, but it is more than hard to be Mark Neu right now and have this new battle happening within your body, having not had much time with friends to speak of in months and missing your kids and your wife when they are away…and it is very hard to be me right now feeling torn as I live again (Still)  trying to take the best care I can of Mark in Denver and our daughters in Firestone. I can’t speak for my girls, but I just cry when I imagine their lives. So, if you are involved in our lives, I just want to prepare you, just about anything is possible right now if you are around us- but I think what all of us needs the very most is prayer, lots of hugs and unconditional love.

I hope you can continue to hang in there with us and be there with us. As I read in my studies, it is just as I suspected, PEOPLE NEED PEOPLE. It’s so much worse to go through something like this alone. You would much rather have someone look you in the eye with fear or tears and tell you the honest truth that this shit scares them, they feel helpless or don’t know what to do or that they don’t like to see you like this and wish you were healthy but be present, than to just disappear and have to go through all of this feeling isolated and alone.

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CANCER, I HATE YOU!!!!!!!!!! I ABSOLUTELY HATE YOU!!!!!!!!!!!!

 

The Long Haul….

This past Sunday was the beginning of a very difficult week. Mark took the higher dose of 2 Ambien instead of the one he had been taking and as a result when his UTI woke him up, he fell, not once but twice and was very disoriented and since he didn’t let me know about the fact that he took that extra Ambien, I thought something was majorly wrong and called the doctor, who had us go to ER.

In the process, I discovered some things I would not have known otherwise …. he had blood in his urine (apparently since Friday) and his lower extremities were very swollen. (could never see that as he had been wearing, socks and long pants a lot.) I indeed thought this was alarming (though the ER docs. didn’t) and called our Allo Nurse when we got home to let her know. She had him readmitted. Being readmitted to the hospital is very normal and a big reason they have transplant patients stay so close to the hospital.

Mark wasn’t happy and to make matters worse, the communication at the hospital and between the hospital and the clinic was terrible!!

In short, his UTI- though viral- is clearing up. He is very tired, but at least he is at the apartment and at his next Clinic appointment, we have plans to complain about several mishaps that occurred due to communication break downs this week.

We are waiting results of biopsies on his upper and lower GI tract. Hoping to find out exactly what is causing his stomach to swell and hopefully have a plan to get him back to normal. 🙂

It has been a true blessing the people who have come to stay with Mark and take part in his caregiving a week at a time! First, Carmela and her husband Brett- some of our best friends who just happen to live in Oklahoma! This was perfect as they came when I had to take Shyanna to college and this could have proven to be an incredibly difficult week for Mark, but having the two of them with their incredibly positive attitudes, encouragement and love pouring out, made it a bit easier on him. (Of course everything in him was wishing he could bring her to college- so it was an emotional time.) The perfect people for that time!

The next person to come was Andrea, Mark’s step mom. She is a nurse and her expertise was perfect as he had developed his urinary tract infection, had become somewhat dehydrated and had to be given extra fluids at clinic and his medications were changing up quite a bit. It made both of us rest easier to know that she knew a bit more about the medicines and had her nursing knowledge to care for him! Again, the perfect person for that time!

Currently, his mom is with him and that, too, is perfect!! Who doesn’t want their mom when they are having a rough time… and this has definitely been a difficult week! He hasn’t been feeling great, hasn’t been resting well with the UTI  and it’s been frustrating. There is no other love quite like a mother’s love….

In the mean time, I have been able to, after four and a half long months, get home, spend some real time with our girls (who are still kids, by the way, and need their parents) and take care of things around our home. Although, to be honest, I usually have a day or two each week I get to be home that all I want to do is lay around because I am utterly exhausted. I’ve followed Mark around the country and raised four kids who were all born within five years, and had various things happen in my life, but THIS has been the most that has ever been asked of my emotions, mind and body in my entire life day in and day out. I am so thankful for all the support I have. I believe I may just crash when this is over.

Our family and close friends, especially, have been a rock for us! It’s also been great to have the opportunity to strengthen relationships with some family that we haven’t had the opportunity with as much (for instance, Mark’s dad is so much like Mark, that it is amazing and it really brought me and the girls a calming feeling when he was around) and some people I didn’t know as well before all of this and have had the chance to get to know- and I thank God for them daily, now. The way God has kept us all safe and secure and provided for not just needs- but also some wants- has been incredible!

I would be lying, however, if I said that I CANNOT WAIT for the month of September to pass and my HOPE is that in October Mark can come home and we can all just live in one place again….”I can do 30-40 more days of this…. ” “I can do all things through Christ who gives me strength.” These are my mantras and I now compare myself to the little train that could…. Or Dori, the fish who said, “Just keep swimming.” I have to just keep believing!!!

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The Journey Continues…

Yesterday was day 52. Yesterday we got the results from the  FISH test they did on Mark’s bone marrow…. In case you haven’t heard….

That test showed that the translocation of chromosome #11 is not happening. The test showed no MLL and no signs of Leukemia AT ALL!!! (#11 was the one they were most worried about out of the three that were mutating.)

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Mark was pretty much as emotionless as he has seemed all along. He is a rock. I, on the other hand, cried on and off the rest of the day; typical. 🙂

This is EXACTLY what is hoped for when you hit a person with the big guns of chemo, wipe out their immune system and then introduce, new, healthy stem cells! Though we don’t yet have a percentage of how #21’s donor cells are taking over compared to what might be left of Mark’s, we know it must be heading in the right direction because….

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#21, in case you missed it before, is how we refer to our anonymous 21 year old male stem cell donor. We all TRULY hope we can meet him one day and let him know how much we appreciate him!

We are so thankful to God, for the way He has taken care of us this ENTIRE time! We are so thankful for the MANY people who have been like His hands and feet to us through this, taking care of our needs and even wants along the way. It has blessed us IMMENSELY! So much so, that words cannot even describe!

From here, we still need prayer. This journey is still just that, a journey. Mark and I are still living the city life and we still have people scheduled to come out and stay with him so that I can be home with our girls half of every week that he has to stay in Denver.  This was basically our first checkpoint post transplant. WE ARE ETERNALLY GRATEFUL for the results of this one, but, another bone marrow biopsy (Poor Mark- he’s had 4 or is it 5 already now.)will happen again around day 60, then around day 90, another around 6 months and then around 1 year.

Also, currently, with his immune system being suppressed, he has a virus which had been dormant, creep up called CMV. He has been taking anti-viral medication for it and keeping it in check- but it is there.

He also has a UTI- a viral UTI so we have to wait it out and just try to help the symptoms he is having- but we are praying that it passes quickly and without complication.

Lastly, he has had some tenderness and swelling in his abdominal region. They had tried to treat for GVHD and as said above, he is on medication for CMV (two things they think could be causing it) but it is not clearing up and the distention in his mid-section continues to grow to uncomfortable proportions, so, Tuesday this week he will have endoscopies done with biopsies taken to determine what the exact cause of this condition is so they can be sure to treat it correctly.

CMV info- http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

GVHD info- http://my.clevelandclinic.org/services/bone_marrow_transplantation/hic_graft_vs_host_disease_an_overview_in_bone_marrow_transplant.aspx

What a day! What a weekend! We are planning on continuing our celebration. Yesterday it was just the two of us, but today, we will see some friends and be with three of our girls AND we are having a sleep-over with them at the apartment tonight! (I LOVE, LOVE, LOVE it when we can all be in the same place together!)

We miss and love our Shyanna, but we are extremely happy (and not surprised to report) that she is doing FANTASTIC as a college student and basketball player! 🙂 AND, she is bringing home a few teammates next weekend for a visit ! 🙂

HAPPY TIMES and we are thankful we can share this part of the journey with you!

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