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Helpful suggestions as we head into BMT?
We are headed to Rochester tomorrow to begin an of Autonomous Stem Cell transplant. My wife has lived with Myeloma for about a year now, and gone down a long road to confirmed diagnosis, surgery, radiation, and chemo -- but this is a new step. As a caregiver I am asking for any helpful suggestions from others who have been down this road.
"Precious Lord, take my hand,
Lead me on, help me stand..."
We have had wonderful support from local medical staff, the Mayo clinic team, family, friends, and many prayer warriors. As we head to the Gift of Life house we are very hopeful and positive.
"...I am tired, I am weak, I am worn..."
Five months of pain, uncertainty and many tests led to a confirmed myeloma diagnosis at Mayo, where we should have started. Surgery and radiation followed, not once, but twice. Then came seven rounds of chemo, many more tests, and the usual visits to the ER and doctors. God brought us through it all, but we are tired, and what looks to be the biggest hurdle is just ahead. How do we find the energy?
"...Thro' the storm, thro' the night,
Lead me on to the light..."
Yes, we have talked to enough people to know that better days lie ahead if we can just survive this procedure. Is it wrong to fear the storm?
"...Take my hand, precious Lord,
Lead me home."
We are thankful to have heard of the Gift of Life transplant house, and look forward to a homey environment for the weeks of the transplant and initial recovery. But it isn't home, and we will be far from those friends and family who have supported us through this process. How can we keep friends and family close, and that feeling of home when we are in isolation far away? Yes, we are always at home in Christ, and our faith is still strong, but sometimes we need people we can touch and hold.
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HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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@jiminmorris Welcome to Connect and Mayo Rochester. It’s my home away from home after an allogenic bone marrow transplant 4 years ago. Your wife cannot be in better care anywhere! The team in Station 9-4 will be a new family for you…and so will those of us in Connect who have had BMT.
We have several members who have had SCT for MM and other blood cancers. The autogenic stem cell transplant uses your wife’s own cells so she should have an easier time with recovery. Let me connect you with some of our members who have recently had this similar experience, some in Mayo-Rochester.
@jstpeachey had her transplant just 8 days ago and is doing really well. She understandable hasn’t shared her experience yet but having spoken with her today, she’s doing great!
@capthondo shares his story at Mayo Rochester in this link… https://connect.mayoclinic.org/comment/747475/
It can be found in this discussion group:
~Want to talk about Multiple Myeloma: Anyone else? https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
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@countrygirlusa also had an auto transplant in Rochester and shares her story: https://connect.mayoclinic.org/comment/716285/
Her story along with mine and many others are found in this discussion group about our bone marrow transplants:
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
As for being disconnected from friends and relatives, this time will go quickly for both you and your wife. My transplant required my husband and I to be gone for 4 months. We got along just fine with family back home via phone calls, computer chats, emails and texts. Plus you’ll be staying in the Gift of Hope transplant house where you’ll have people near you sharing the same experiences.
Do you have any specific questions for any of us?
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5 ReactionsHaving lost my father to cancer, we learned that cancer patients and caregivers *must* do their homework on both the disease and treatment options. So my wife and I have already looked at those stories and considered applicable lessons. We are just trying to avoid learning lessons the hard way, while keeping in mind the diversity of treatments and experiences.
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2 ReactionsAmen. Your trust in the Lord and the gifts of the healing arts He provides is encouraging and fruitful. Stay the course and persevere through these difficult trials. Peace be with you.
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3 ReactionsWe are settled in the Gift of Life transplant house after a wonderful orientation and a beautiful drive across Minnesota, purposely missing all of the interstates and big cities. A drive through the fields of corn and beans makes it somehow seem like we never left home.
How will we deal with ASCT after months of surgery, radiation and chemo? Thanks to those who reached out to us, and helped us get things in perspective: transplant is rebirth, revival, a second chance at life. It is like the images Isaiah uses in speaking of the revival of a nation.
"To give them beauty for ashes..."
When we are moaning about our lot in life, our tiredness, and the injustice of it all we are as useless as a heap of ashes. But as we are reborn spiritually, emotionally and even physically, those ugly ashes are replaced by a beauty and depth of purpose. It is not just that a dying, diseased part of my wife's body is being replaced with new, vibrant, living tissue. We are being remade with greater beauty than we ever had before.
"... The oil of joy for mourning ..."
We have so much to rejoice about, that through these medical procedures we have been spared much suffering, and avoided many pitfalls and potential negative outcomes. We can sincerely be joyful. Even in this place of refuge I found myself playing the piano, singing and rejoicing today!
"... The garment of praise for the spirit of heaviness ..."
We are clothed in a positive attitude, seeing the great things that have been accomplished and all that is yet to come. Without this perspective we are naked, ashamed and unable to relate to others.
"... That they may be called trees of righteousness,
The planting of the Lord, that He may be glorified..."
God is glorified and we are firmly established through this unsettling process of revival, through this very fearful process of transplant.
"...And they shall rebuild the old ruins,
They shall raise up the former desolations,
And they shall repair the ruined cities,
The desolations of many generations."
It is just like this: The newer will be better than the old, even though we may think to miss the old and not want to see it go away. Those dying parts are like desolate cities of a long forgotten civilization. The heaps of ruins need to be replaced with a bustling metropolis.
Thanks for all your help, and keep those practical insights coming. Surely all those hard fought battles count for something!
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2 ReactionsWe are finishing off our second day of pre-ASCT testing and have begun to settle into life in Rochester. As always, the potential cancer outcomes are always in the back of our minds, motivating us onward. I was reading Romans 5:1-2 while praying last night.
“ Therefore, having been justified by faith…”
When facing incurable cancer one feels driven to “make things right with God.” How do we accomplish that? Paradoxically, we can’t, but God can, which requires faith on our part. Faith is huge in any transplant. We trust that the medical staff can remove what is dead or dying and replace it with viable tissue, and all that without killing us. Ultimately after all the treatment is completed we must put faith in God to finish the healing work in us. By faith we lose our life (or a part of our body anyway) in order to gain life (lengthening or improving it).
“… we have peace with God through our Lord Jesus Christ …”
Through all the anticipation, expectation, hopes and fears we look for that ultimate peace, that feeling of being out of danger, and finished with the battle. Only one person can give that peace, the one who has been given all authority in heaven and on earth. God numbers our days, not the doctors.
“… through whom we also have obtained our introduction by faith into this grace in which we stand…”
We are so wonderfully blessed to receive treatment! We are so unworthy of these blessings. It is nothing we earned or deserved, but it is all of God’s grace. Humbled, we are able to show greater love and compassion for others who struggle and suffer as we do.
“… and we celebrate in hope of the glory of God.”
Is it possible to celebrate in the midst of great suffering? What is there to celebrate? There are those daily miracles, large and small, milestones along our path to health. The hope that we hang onto is that God is glorified in us, and that we are being remade in his glorious image. The ultimate transplant is when the resurrection power of Christ transforms all that is dead in us into something living, beautiful and glorious. Such a hope!