;)
Continued decline in motor capabilities and increased paralysis
Friday, April 14, 2017 at 1:42PM Just thought I would write a quick update on how things have progressed since we officially started hospice care.
The paralysis from my waist down is all but complete. I can wiggle my large toes a very small bit with much effort, but for the most part, my legs are completely dead weight. I can still feel touches on my legs, but with greatly reduced sensitivity.
For me, this means I have very rapidly moved from fully functioning with a slight limp about 12 days ago to completely non-functional from the waist down today. As my paralysis includes my internal organs and digestive system, I am also in the unfortunate position of now needing a catheter and diapers. It's been a fairly rapid descent, and so far I'm able to occasionally still see the humor in these events, but day-to-day life is radically different now than it was just a few days ago.
Hospice brought a great deal of medical equipment to my home to make things easier for my family and the hospice nurses as they care for me. One such piece of equipment was a Hoyer lift, which is basically a hydraulic lift with an attached hammock-like sling that allows caregivers to easily move and lift an individual who is completely or partially paralyzed. Unfortunately, the lift proved useless to me due to the rapid growth of the tumors in my psoas (large back) muscles.
In order to make use of the lift, the patient must be placed into the hammock/sling, and then connected to the arms of the lift in order to move them from one place to the other. Unfortunately for me, this means someone (or several individuals) must lift me from my chair and place me on the hammock. When we attempted to do this with the assistance of the hospice nurse, the stretching of my tumor-ridden back muscles in the process took me to a level 10 pain state for at least 15 minutes - and this was after being pre-medicated with an unusually high dose of several different narcotic pain killers prior to the attempted move.
So, for now, I remain in my recliner within a fairly narrow range of acceptable angles that are tolerable to my back muscles. This makes caring for my needs much more difficult for my family, since processes that require moving me must be done very carefully to avoid the excruciating pain that comes when my back or abdominal muscles are stretched. It also means that all of this movement must be done manually, since the hydraulic assistance is unable to be used. Truly, the efforts that my wife and parents are exerting to care for me are nothing short of heroic.
Our bedtime family photo
Although I can't really leave my chair or my room anymore, I relish the time I get to spend with my children, my beautiful wife, and my parents, who are also here helping with my care. I continue to notice significant declines in my upper extremity strength and dexterity. I have lost even the strength required to lift my hands all the way above my head, so I expect that the tumors are quickly working through my spine and will eventually paralyze something more important. For me, this will be a blessing, as my quality of life has dropped so quickly and so dramatically. I am confident of my eternal destination, and am excited to meet my Savior.
Today, as we celebrated the resurrection of Jesus on this Easter Sunday, I had the privilege of spending the morning with one of my oldest friends and mentors who came to stay with me while my family attended church. He was kind enough to change his family's Easter plans to be here in Dallas rather than at home in Nashville so he could see me once more. It was a sweet time of remembering old memories together, reflecting on the Easter story from the Gospel of Luke, and reading through Paul's exhortations about the central importance of the resurrection to the Christian faith from 1 Corinthians 15. There really have been so many wonderful moments of joy over the past week as I've been able to talk with good friends from various stages of my life.
As you pray, please remember these requests:
- Strength, peace, and endurance for Melissa and my parents as they care for me
- For a merciful transition and no prolonged suffering in these final days
- For my children, as they process the loss of a parent
- For the ability to continue to experience true joy in spite of life's circumstances
Reader Comments (45)
Hello Robert and Melissa,
We have never met, but I am married to Jakob Jensen's Uncle. You have been in my prayers as Melissa and I have walked similar paths. I lost my husband to a malignant brain tumor 18 1/2 years ago. I was 34 with three little kids. I don't understand many things in life, but I do know that Jesus Christ is faithful and can be trusted in all situations!! The greatest gift you have given your family is them knowing where you will spend eternity. Not because you are a good guy, or have a great education, etc., but becuase you have accepted Christ as your Saviour!! If we believe the Word of God is inerrent (sp) it is the Rock we stood on and your family will too in the days to come. Praying for God's grace and mercy on each of you. God Bless, Ellen Jensen
Sending peace and love to you and family.
You're an inspiration. Thank you for sharing your journey with us. Praying for you and your family.
I've followed your posts for the last many months and just wanted to thank you for sharing your journey. My husband was treated for colon cancer last year and your description of chemo being like the The Machine in The Princess Bride was so helpful in understanding what he was going through. Thank you for your honesty, joy in the face of adversity, and hope in the promises of new life. Prayers for peace and comfort for you and your family today.
Dr. Yale,
You and your family remain in my heart and in my prayers.
Randy
Bless you all! and Peace to everyone in the days ahead.
I am a friend of Mandy and Chris Hatton. You are an amazing person. JRS
Praying for you and your family. I have known you since you were a young boy. I praise God who has given you and your family the strength and conviction for such a great testimony.
Rob,
I've watched you grow since the 1980s when your Grandpa became the Pastor of Chuckanut Community Church in Bellingham. It always thrilled my soul when you would witness to anyone and everyone, no matter how much older they were than you. And the thing is, that they really listened. God has had a hand on you since so long ago. I can't imagine what He's got in store for you soon. In a way I envy you -- to be able to be going home soon, but can't imagine how you are making it through the day, except that it is day by day with God's help. Thank you for you wonderful witness through your Blog and how positive you are through all of this. I must admit, it's been very hard to read how your health has been declining, but I just have to keep reminding myself that you are in God's hands, and He knows what is best for you. I will continue to pray for an easy transition, and that the Lord will truly keep Melissa and your children "under His wings."
Love in Christ,
Joan Riddick (Rebecca Laughlin's Mom)
Rob,
Thank you for continuing to update all those whose love and know you from afar. As I read your posts, I am continually amazed at the impact you are having by sharing your journey so transparently and faithfully. How many times has someone's post started as "I don't know you, but my friend..."? When you began this fight against cancer, you said "God won't waste my cancer." Surely He has not! God never wastes a hurt. I don't think anyone will ever know the extent to which you have impacted, influenced, and inspired people! And while we can't understand the difficult ways in which He often works and the pain that is allowed, the truth of God's Sovereingty above suffering is there. And you have testified to that so faithfully over these last 13 months. I will continue to pray for Melissa, your parents, asnd your children. I pray for you, dear friend, as you finish the race you've run so well. I'm proud to call you my friend. Thank you for lighting up this world with laughter, good humor, and a love of God, life, friendship, food, and facial peel masks (sorry- can't ever forget that!) <3 Colleen
I pray for you and your family, Rob. G-d bless you all!
Rob:
We have never met before, and do not know each other at all. I learned of you when your most recent blog post miraculously appeared on my Facebook feed.
I've just sat here, still and engaged, for the last hour+, reading through your updates across this last year- and at times, having to take breaks to wipe away the tears and stop from sobbing so I could re-focus my eyes onto the monitor to continue. Your story has struck a chord with me- as we are just a few years apart in age, but share in the fact that we have wonderful, caring wives and small children who look at us as and for their everything.
Your resolve and your faith are tremendously admirable. The Lord is doing his work by spreading your story to strangers so that others can take pause to reflect on how precious life is, to re-focus on the things that truly matter, and re-calibrate toward walking more closely with Him.
Your love of your children can be seen reflected on their faces in the photos you've shared. No matter what, nothing can ever break that.
I'm not certain that kind words from a stranger can do much to help, but I felt compelled to leave you a message to let you know that this stranger is praying for you, your wife, your children, and your family. Your life has touched mine; thank you for helping me.
With love and prayer,
Bryan Halulko
Pittsburgh PA
"To know even one life has breathed easier because you have lived. This is to have succeeded." - Ralph Waldo Emerson
Rob - By Emerson's measure, and validated by the many testimonials here, you are the epitome of success.
Thinking back to how our paths crossed, my last minute decision to take MARK 6305 proved to be a blessing in disguise. Though there were many challenges then, how you handled them is no different then how you are handling them now: with grace, dignity and humor.
Our chance encounter has afforded me the opportunity to meet one of the most humble and kind person I know, and that, I do believe is the working of our Lord. Thank you for being a living example of leading the Christian life. Take comfort in knowing that the legacy you leave for your family and especially your children, is one that will stay with them long after your return to our Heavenly Father.
Please know you will be in my prayers, and hold steadfast in the knowledge that you have been the source of oxygen to those whose lives you touched, including my own.
I apologize in advance for my directness, but if there is a gofundme account for MG and Raegann, please let me know.
With Blessings to You and Yours,
Janel
Dear Rob, I am so sorry to hear of your updated condition and will continue to pray for release from your pain as God holds you in the palm of His hand. Also for Melissa and the children also your parents as they see someone they love so much suffer. May the Lord draw ever closer to you and may you feel His peace.
Rob,
It's been a while since the 'ville. I've caught bits and pieces of your situation on Facebook and recently saw things have taken a serious turn. It is a blessed assurance we have - a sure and certain hope filled with great expectation. I thank God that He has given you the strength, discernment and fortitude to navigate the last year+ with immense grace and humor in the midst of a situation I can only imagine is filled with challenges that must seem insurmountable. Your testimony is reaching many people and I just want to cheer you on as you continue to push forward.
Life is precious, and how much more do we recognize that when our time is running short. The things we choose to share when we know our transition from life to LIFE is approaching often leave profound ripples in the lives of those we share them with. Make every day count. You are impacting more people than you realize.
I preached out of 1 Corinthians 15 this weekend... sow the perishable, let Him raise the imperishable; sow the broken, let Him raise the glorious; sow in weakness, and behold His power. Hallelujah, what a Savior!
I will be praying for you and your family daily and try to keep up with any requests I see either here or on FB.
Set your mind on things above and keep fighting the good fight for His glory.
I have been honored to read your blog. You are an incredible person and will leave a legacy of love for your children.
Love the family bedtime photo! Saying prayers for all of you again tonight, including your specific requests.
Rob, I think of you and your family every day and pray for you. I feel sad for all of the UD students who will not have the chance to learn from you. We should write your words of wisdom on a wall on campus for future generations of sudents. And when Matthew and Reagann are students, they can proudly say, That's my Dad. Take care, Rob.
Continued prayers from Shweta, Prashant and Aisha.
Hi Rob and Melissa,
Your family remains in our thoughts and we pray with, and for you each day..
Best,
Prashant
Thank you for your very honest sharing about the situation. What a godly example you are to your children about how to face unexpected crisis and still have faith and confidence he will take care of you all.