Monday, July 27, 2009

Hospice

It has been quite some time since I last updated my blog. Time seems to move quickly even when you are restricted by a terminal illness in what you can do and where you can go.

Shortly after Father's day, I was admitted back to Karmanos with severe abdominal pain and nausea which mysteriously resolved itself after a couple days in the hospital. After I returned home, my pain control doctor finally found the right combination of pain medication for handling my abdomen pain, which was a great relief. Although my level of pain had decreased, I was having a more difficult time with mobility and sitting/standing. Trips to the clinic were becoming more difficult each time, draining my energy for up to 24 hours afterward.

I met with my clinical trial oncologist to discuss options for future treatment and we were informed that, due to my reduced physical capabilities, I would not be eligible for additional phase I treatment at this time. Deb and I had anticipated this beforehand and had agreed that it was time for me think more about handling the side effects of my cancer rather than treating it systemically. As you can imagine, this was not a decision that we took lightly, but we came to the conclusion that hospice care made the most sense for me.

I didn't know much about hospice before a representative from a local provider met with Deb and me in my home. Hospice essentially takes over my medical care (with a few rare exceptions). I have a doctor, physicians assistant, nurse, and social worker assigned to me. Thus far they have been very responsive to my medical and other needs. Fortunately I was able to keep my wonderful pain team from Karmanos who has been so proactive in addressing my pain. Hospice has provided me medical equipment such as an adjustable hospital bed and wheelchair that make life more comfortable for me.

I haven't had a re-occurrence of the headaches that led to my brain surgery a couple months ago. Hospice has proactively put me back on steroids (which I was on during my stay in Karmanos before and after surgery) to reduce the chance that the headaches will return. I haven't had a MRI since my surgery, so we don't know if the tumor above my left eye has increased in size. We had originally planned to do radiation on this site, but since I have gone on hospice this is no longer in the plan. In doesn't really matter since radiation will not treat my disease systemically. One of the positive effects of the steroids has been an increase in my appetite. This has been nice, especially after dealing with the recent bouts of nausea.

Deb and the kids are handling this whole situation so well; they amaze me every day. Morgan and Landon obviously don't understand my illness but, like so many of you out there, they pray for "daddy to get better." Deb and I are so thankful for all of the cards, letters, emails, etc. that have been such an encouragement to both of us. We are thankful for each and every day we have together.

God Bless,
Nate

33 comments:

Anonymous said...

You are an incredible and amazing man, Nate. Your family rests in the shelter of His wings. Thank you for your testimony. No one knows what the future holds, but you have blessed me today.
Kathy Bardolph

Carol said...

You don't know me, but like so many others, you have touched my life by your Godly attitude and surrender to the One who made you. I am a nurse so I have a deep sense of empathy of what you are going through. I've been praying for you and your family and will continue to do so in the future. Lin Siddon and I have been best of friends for more years than either of us like to count. Your life is precious to Him, to those that know you and even to those of us who do not.

Kristine said...

Thank you for the update, it was so nice to see in my "reader" today! I wish there was something I could do for your family. Prayers are being said and my thoughts are with you all.

Anonymous said...

Thanks for taking the time to update your blog even when it must be a struggle. Your strength and courage certainly are a testimony to your faith and God's power. May you, Deb and the children continue to be upheld by prayers near and far. And may that pain subside!

We've been taking our afternoon swims and think of you. Grandfather is very proud of himself because he can get in the kayak unassisted. It isn't pretty, but it gets him over and back from the beach. The water is very therapeutic and getting warmer by the day.
Hugs and kisses,
Leslie

Dottie said...

Dear Nate and Deb, Thank you for sharing your lives with us..may the Lord whom you love and serve, continue to uphold you both and my prayer continues to be that you will experience His love surrounding you both each and every day. We pray for you both and the children and your family during these days..love, Dottie (and Roger)

Anonymous said...

Hi Nate~
We too have been reading your accounts and have been blessed by knowing you and your family. Through you and your words, God has become more personal to us.

thank you, anonymous

crane-linda said...

Thank you for sharing all that you do. You have such strength and show such an incredible faith. We send words of comfort to you and you end up making us feel comforted. I have truly learned from you. May God continue to hold you and Deb and the children in the palm of His hand. Bless all of you.
Linda Crane

Anonymous said...

Thanks for the update, Nate. Don't know how you do it when I'm sure you are not feeling much energy but, as others have written, you do bless us with your frank writing and sharing of this tough time in your life. Deb, you are also a great blessing and seeing you recently was wonderful. Surely this is not the path any of us humanly would have chosen for you individually or as a family, but you have glorified God through it all and surely we have witnessed that you have kept your vows to each other of "in sickness and in health" far more concretely than most of us have experienced in many more years of marriage. Thanks for being who you both are. We love you and continue to pray for you. Glad for the help hospice is at this time.
Love, Ruth for David too....

Anonymous said...

Hey Nate - it breaks my heart to hear all that you have to struggle through - to be honest, I have asked God "WHY?" While I'm not sure it will ever make sense to me - I am proud to know you and your witness is OUTSTANDING!!! You are still in my prayers (and my Tuesday night Bible study also has you in their prayers) Keep strong and DON'T give up! The Lord isn't finished with you!!!

May God bless you and your family, Charles aka Chuck from Sarasota

Anonymous said...

Hi Nate & Debbie, Seems like either Charles or I check in on your blog every week so we can update our Bible Study Group on your condition for the week. In my job at Waterside Retirement I deal with the Hospice team almost daily. They are well trained for what they do. Just know that we are praying here in Sunny Sarasota often. You are in His Hands and we pray for comfort and peace for you and for Debbie too. Hugs, Janet Rissler

Anonymous said...

Nate and Deb,
Both of you have endured this most difficult situation with grace. May God continue to bless and keep you, Nate, as you walk through the valley of the shadow of death. We will pray for all of you.
Cal VR

Anonymous said...

You have been such an inspiration to me. I am in a Bible study with Lin in Maryland and have come to know you and your family through her.
You and your family remain in my prayers and have for over a year.
The video you made was soooo awesome and holy! I have sent it to many of my friends to give them hope and to see how God has truly worked in you to deliver His message to us.
God Bless you and thanks for the work you are doing for Our Lord and Savior!
Mary Cunningham

Anonymous said...

Nate, your amazing spirit touches us so deeply. We pray for God's loving arms to continue to enfold you and your wonderful family.
In His grip, Joy and Casey Stengel

Anonymous said...

You are in my thots and prayers. I applaud you and Deb for your ability to know what to do, we know that this comes from the Lord. I pray that Hospice will be able to help you and it looks like they already have with the bed and the W/C. Keep up the spirit and the Spirit will keep you up. God Bless, Sherrel L. Adams

Anonymous said...

Nate,
We continue to pray for you. May our God continue to comfort you and your family. There aren’t enough words to express how inspirational you have been to so many of us as you have gone through so many trials and tribulations.

You seem to be in less pain and for that we are thankful. AND it is always good to have your appetite back.

We had one experience with Hospice and we too thought they were very helpful and great people. We still are praying for your peace, and comfort.

Love, peace and prayer, Bill & Penny Wilbanks
(So you can place me, I am in Marge’s small group.)

Anonymous said...

Dear Nate and Deb,
Thank you for updating your blog and sharing your struggles with us all. Your strength and faith are amazing and a wonderful example of how we should live our lives. Know that you and your family remain in my thoughts and prayers.
God bless you all,
Mary Lou Creamer

Anonymous said...

Thank you for sharing even when it may be difficult to do so. You and Deb continue to show great courage and faith despite the circumstances. May God give you peace, keep you free from pain, and surround you with the love of your friends and family.
Rebecca (& Gustavo)

Barbara said...

Nate, you are an incredible husband and father with enormous strength and understanding regarding your condition. Needless to say, YOU are inspiring all of US. Thanks you for the update. Always know that you are in our prayers. Barb & Jerry Gosse

Anonymous said...

Nate- we, here at the Clement house, are not big computer people- but we have been getting regular printouts from Kathy's folks. You have been in our thoughts and prayers all along though!
I know we only see you guys twice a year, but I felt a special bond with you, Nate, from the git go. We both share an adventurous spirit. I will never forget taking you water skiing in gun lake. We went to the middle of the lake so you could start in the deep, you jumped out, stood up, and the water didn't even come up to your waist!
On a more serious note, it is obvious that you both know that this earth is not out home. We believe it too. I might get in a car crash this afternoon and meet Jesus face to face today, I might beat you there Nate, but I still live under the alusion that I have much time left in this life.
Reading yours and Debs comments is an inspiration to all! With Christ there is no such thing as death. Soon we will all be together, glorifying God in heaven with no sin, no pain, no sadness. Reading your blog testifies that you and Deb have grown much closer to Christ through this experience. We will continue to pray for all of you. I know I haven't talked to you for a couple of years now, but I want to tell you I am honored to know you, and I am looking forward to seeing you very soon!!!
Love Joe and Kathy Clement

Anonymous said...

We are praying that your pain is kept under control so you are able to enjoy your time together as a family. Actually, we are praying very many things for you. You are very brave. Thank you for sharing your thoughts with us. There are so many things we would like to do for you, but knowing what specifically to pray for is wonderful. May Christ bless you and your family.

Bryant Brooks said...

Your website is a wonderful living testament to the abiding presence of God. Thanks, Nate. Bryant Brooks

sstraffon said...

My prayers continue to be with you and your family. You are an amazing, inspirational man.

Aubrey said...

Deb,
It was so great to see you at the wedding this month. Courtney was so happy you came to see her big day! Nate, you are handling this difficult time with a calm understanding in a very realistic manner. Be assurred that it is really opening up the eyes of those who take their life for granted.. after reading all the posts, I can see how many people you have touched and it is amazing! I will be in Detroit next month and plan to visit :) Stay Strong, as we know you have been all along. Keep that(Memorial Day) "Home Runner hitter" mentality....

Love Aubrey

Anonymous said...

Nate and Deb,
Sometimes we are at a loss for words.
We love you guys and your precious children and pray for you daily.
May God bless you as you enjoy this time together and continue to live in the knowledge of His guiding hand.
As I think of your mom, Deb, I am amazes at what a blessing she is to the family as she celebrates her birthday today.
Also, let us know if there is anything you need.
Love, John, Rosemary, Rob and Janna

Lisa said...

Nate, Deb and Family:
From all of us in McCook on Apache Drive - God Bless You! You are a powerful example for each of us. Thank you for sharing your life with us. Our prayers of comfort are with you and your family.

Lisa Dusatko Mroczek and all the Dusatko's

Dee F. said...

Hello Nate,
These notes from people...some you know and some you don't are truly a testimony to your strength and courage throughout this battle. You have touched so many. I have always thought you were such a very special young man....with so many gifts, such a genuine interest in others, always sincere and kind, and possessing such a gentle spirit. Your wife and children are so blessed to have such a Godly man in their lives.
I am always praying for you and your beautiful family.
Dee

Laura said...

Our thoughts and prayers are with you and your beautiful family - I want you to know how much I have appreciated your spirit and strength through your reflections in this blog.
Laura Draper

Anonymous said...

Nate and Deb,
I am glad you are surrounded by family and friends and we pray that
you are aware of the love of many who are unable to visit in person.
May you be blessed by their presence and a blessing to them as well with your testimony of God's unfailing love.
Our thoughts and prayers are with you and your family.
Love, Rosemary Strodtman and family

Anonymous said...

Nate and Deb,
You do not know me, but you may remember my husband from your school days here in McCook. His name is Nate Schneider. I met Nate in 2003. I was married to a fine man by the name of Karl Kjendal, before I met Nate. (If you google his name, you will find many newspaper articles about him.) Karl was about the same age as you. He was diagnosed with stage four colon cancer at the age of 28. At the time we had a three year old daughter and I was six months pregnant with our second daughter. Karl received treatment from Memorial Sloan Kettering. He died at the age of 29. I learned so much during the last year of his life and try to share it with others. God has a purpose for everyone and we may not know what it is, but knowing the sacrifices He made for us is a comfort. God bless you and your family. Make sure you enjoy each other. I truly believe that your children will help Deb and be a great comfort to the both of you. I do not know what I would do if I didn't have my girls.
Blessings,
Sarah Schneider

Anonymous said...

Your family is in my thoughts and prayers. With love, Dara Young (COLE's Prayer Team)

www.colesfoundation.com

Anonymous said...

Deb,

I wanted to let you know that Nate and your whole family are in my prayers today. I pray that Nate is comfortable and at peace. I will be praying for the love of God to surround you as you face these very difficult days. I pray the He will give you strength and peace.

Love in Christ,
Cole’s (Caring Openly, Loving Eternally) prayer team
www.colesfoundation.com
Sandy Daron

Chrisi said...

I read an update today on Colesfoundation.com that mentioned Nate is going to be going home soon. I'm so sorry that this has happened to your family. May God hold you close during this difficult time and give Nate comfort and peace as he prepares to receive his eternal reward. I will keep you in my prayers.

C.O.L.E Prayer Team
www.colesfoundation.com

Chrisi Hobbs

Anonymous said...

We are sending prayers.

COLE Prayer Team - www.colesfoundation.com

www.caringbridge.org/visit/rileycook

Hugs of love, Andrea