It has been seven months now while on this journey called cancer. My husband’s lymphoma resurfaced this past late August. This stormed into our lives and took all that we were beginning to regain, as covid restrictions were being eased. I then, was placed in the drivers seat, and not the one we sit in for a lovely car ride.
What can I say, as this is not a choice. Thankfully, my DMT was changed from Tysabri to Ocrevus a year prior, and this made all the difference as Ocrevus has been a life changing medication for me. Through the demands of caring for all the parts of living that Cancer demands, I have been able to remain stable until recently.
Stem Cell Transplant is all consuming, as it requires a strong caretaker to step into many shoes in order to get through the process well. Our situation required moving temporarily to another city for several weeks, of which we are still here, but are being released home next week for one month. I am thankful that our hotel is just around the corner from the hospital, thereby making my during my husbands three week hospitalization easier. I lugged laundry to out hotel’s one small washer every two days, and hauled it back as my husbands clothes being clear were a vital priority to keep bacteria down to a minimum. I made drink runs and miscellaneous runs.This may not seem like a big deal to those who don’t have a physical challenge. For me, using a cane has become part of life, though on good days, I don’t use it, however, keep it nearby. Carrying anything with a cane is a challenge…Especially through the maze of a parking deck, then through to the hospital, elevators, steps, and down a corridor and into a hospital room. I certainly got some exercise.
Caretaking was greatly appreciated by hospital staff, so it was helpful, though not required, though suggested, to help with showering, daily full body wipe downs with antibacterial special wipes, sheet changes, encouraging liquids, advocating, assisted hall walks, counseling when spirits rose and fell, etc!!! For near three weeks. The enormity of a stem cell transplant can be educated, but we had no real idea until it all began…which from the start before hospital admission were daily appointments and procedures to prepare.
Then the discharge to hotel transitioning to daily outpatient appointments began. However, with no immune system, severe fatigue, and an uninvited lung infection complicated recovery. Now, we are preparing for our move back home. Now, I am feeling the affects of the last seven months of Chemo, tests, procedures, biopsies, family and friend advocate, running a home, an apartment property, and the care of my ill husband.
MS, took a back seat, as it had no choice. My symptoms have resurfaced, and there have only been a few who have even asked how I am, as my husband needed to be first. MS seems distant, but ever present, but has no voice and no place, and must remain in the shadows. How do I take care of myself?
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