Kathy’s Story

Site created on January 4, 2020

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Newest Update

Journal entry by Kathy Urevig

This message is long overdue!  My Day 100 of my stem cell transplant was April 29th when I returned to Rochester Mayo for post assessment of my transplant.  Upon our early arrival, everyone was wearing masks, temperatures were taken, questions asked pertaining to coronavirus, and seating marked off 6 ft. apart.  It was a quiet, erie environment compared to the usual busyness and people's voices.  My first tests were multiple blood labs taken followed by a bone marrow biopsy. My doctor consultation wasn't scheduled until the afternoon. We walked to the building where Dr. Kourelis, my oncologist/hematologist, was located and asked if I could see the doctor earlier since my tests were completed early. There were very few patients waiting in the large waiting room because most doctor/patient consultations were being held by virtual phone calls. I requested a personal face-to-face consultation with my doctor since this was my post assessment following my stem cell transplant in January.  The doctor agreed to see me at 9 AM in his office for our consultation. The lab and biopsy results were not going to be ready that day because of the busy backlog of many patients' tests.  We visited and discussed questions regarding the stem cell transplant and how I was feeling. We discussed some issues I was having, my future direction, and follow-up plan. It wasn't until May 5th, Dr. Kourelis called me with test results.  He informed me I was not in remission, but my  light chain numbers were much lower than before the stem cell transplant.  My light chain number of 21 was now lowered to 8.5 . The question now is how long will I remain at this number before it begins to rise?  My bone marrow biopsy showed less than 5 percent Multiple Myeloma cells which the doctor said was good. I am to have blood drawn monthly at Madelia Clinic to check my MM light chain.  If the light chain numbers start increasing, I will be placed on maintenance chemo.  I will also begin having my immunization vaccine shots given to me the end of July since all my previous vaccinations were wiped out of my system with the stem cell transplant.  I am feeling stronger, beginning to have more energy, my appetite is returning, and so is my hair!  A major issue for me has been the increase burning pain of peripheral neuropathy in my hands, feet, and now my body core. Peripheral neuropathy (nerve pain damage) is a permanent side effect of chemotherapy, and unfortunately, my body system is susceptible to the negative  chemo effects, no matter what kind of chemotherapy is tried. I have tried numerous treatments to manage this nerve pain, but nothing has been successful.  I have been prescribed pain pills to help manage the nerve pain when the pain becomes unbearable. I don't like taking pain meds, but I don't like to be in constant pain either to live a quality life. I have a virtual medical appt. consultation with my neurologist this week to discuss my nerve  condition called CIDP (Chronic Inflammatory Dimilating Peripheral Neuropathy) which causes nerve damage/deterioration to the milan sheath covering of the nerves. Previously to the stem cell transplant, I had been taking monthly 4 hr. IVIG infusions at the cancer center to help control/improve this condition since 2014.  The neurologist and oncologists may have me begin these monthly infusions again to see if my condition improves. Needless to say, my doctors tell me I am a complicated case as a patient with mutiple health issues. God willing, my health journey will be on a smoother road for a longer duration of time.  I appreciate and thank each of you for your continued prayers and various ways of support during my transplant journey.  Being quarantined 4 months indoors with my spouse has been challenging, but we made it!  Now the coronavirus has arrived changing our entire country's living style.  We are back living semi- quarantined, but at least we can be outdoors in our yard! 😷😷 
Hopefully and prayfully, the coronavirus will end in our country soon if everyone would cooperate, follow the recommended health rules, wear masks for protection, and use common sense to stay safe and healthy!  
Looking forward to placing our WELCOME mat out again and to be able to gather face- to -face with my family and friends soon! 😘
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