New Year's Day resolution should be to lose weight or to exercise more, not learn to walk again. This was the resolution my wife Amanda was forced to make New Year's Day when multiple myeloma was found compressing her spinal cord robbing her of the use of her legs and left arm. Six month newlyweds should plan to remodel their home to make room for a growing family, not because of cancer. These are two realities we are facing in 2018.
Treatment has begun. We elected to seek out the nationally renowned care of Mayo Clinic in Phoenix Arizona. The road will be a long one. Roughly four to six months of treatment will likely be followed by a bone marrow transplant using Amanda's own stem cells. The total course of treatment could be two to three years. However, Dr. Stewart, her oncologist, continually points to her young age and has said the plan is to completely cure her! Even more, he assured us that after the full course of treatment we will be able to start a family. Amanda's first cycle of treatment has included three different drugs.
Were it not for the neurological issues her cancer treatment would be done as an out patient. The tumor that was compressing her spinal cord has shrunk considerably. However it did cause damage to her spinal cord. The neurologist compared her condition to a spinal cord injury similar to one suffered in a car accident or football injury. To what extend and how long it will take for her to regain her mobility is still unknown. Her strength improves a every day with OT/PT. She has recently started to stand and even take her first steps with assistance. However her gait pattern is still uncoordinated as her joints try to figure out where they are in space.
The rehab team has set March 1st as her tentative discharge date. Dr. Humphries, Amanda's pain management and rehab doctor, is anticipating she will leave Arizona with the aid of a walker and wheelchair for longer distances. We will celebrate this day like baby birds leaving the nest. The care here at Mayo Clinic has lived up to their reputation. We are eager to set out to face a new world for us. However, we realize it will be a life full of new challenges to face. Occupational therapy has offered to review the floor plan of our small Cape Cod home and offer suggestions as to how we can accommodate the walker and wheelchair Amanda will need for mobility and independence. Modifications such as a wheel chair ramp, wider door ways, modified closet space, and walk in shower, are all possibilities.
Amanda's return to work is unknown. She has been on short term disability since November. It will run out in April. We are anticipating living on one income for an indefinite length of time. The unopened medical bills that are piling up on the dining room table make it hard to think about making the necessary updates to our home, let alone the monthly bills. Medical insurance help pay for MRIs, chemo and rehabilitation therapy. However it seems that the financial assistance insurance provides in the clinical setting does not extend to the home setting.
We truly believe the positive thoughts and prayers of family and friends have lit a path to a positive prognosis and recovery. For this we are so very grateful. Amanda’s favorite part of the day is mail time when she receives so many thoughtful and creative cards and care packages. They provide some of the comforts of home and a bright spot in her day. However, we are getting to a point that we need to consider some of the comforts of our home and we are going to need help. This fund has been created to help with some of the costs of a new kind of life we never imagined living. Donations are appreciated as well as continued thoughts and prayers. Please follow Amanda’s recovery story by visiting the link below.
Click here to follow Gene and Amanda's recovery story via CaringBridge
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