Life with AL Amyloidosis and Multiple Myeloma

I am grateful beyond measure!

It was Memorial Day weekend 2023 and our annual family vacation in Myrtle Beach, SC. The perfect time to hit the beach, play in the waves and pools, build sandcastles, and reunite with my children, their spouses, and my grandchildren. I wasn’t feeling 100%, but thought the fatigue was due to seasonal allergies.  The shortness of breath had been something I noticed for some time but chalked it up to being out of shape. My stomach had also been a little wonky and I never quite knew how food would sit, but having an empty stomach made me feel even more nauseous.  I was on vacation, and it was time to have fun and forget about all of that. I had also developed a dry cough that was keeping my family up at night. Again, my thoughts were allergies. Cough drops and sips of water didn’t work. I had heaviness in my chest. Then things worsened. I found myself unable to catch my breath walking at a normal pace down to the beach. My heart felt like it was going to explode from within my chest and the fatigue was like none I had ever experienced. At that time, my daughter insisted I go to urgent care, and I was diagnosed with an allergy-induced asthma flare-up and I was given nebulizer treatments and put on a methyl/prednisolone pack. The problem was I felt a little better but honestly not good. We flew home to Minnesota and then drove back to Wisconsin the next day.

Once settled at home, I couldn’t sleep and had a nasty cough, chest tightness, and shortness of breath. I woke up early morning experiencing shortness of breath and noticed my ankles were swollen. I went to the E.R. and my oxygen was 90%, and my blood pressure was very high. They ran tests and my lab work was not normal. The E.R. physician recommended I see a cardiologist. Dr. Glenn Nickele, a cardiologist at St. Croix Health ordered several tests and scans, and he mentioned the diagnosis of amyloidosis. After many tests, scans, ultrasounds, and biopsies I was referred to Dr. Valmiki Maharaj at the University of Minnesota Clinic and Hospital, who then connected me with my hematologist/oncologist Dr. Sean Tracy. I also consulted with a bone marrow transplant physician, Dr. Daniel O’Leary, after many weeks of tests/scans.

A fat pad biopsy and bone marrow biopsy were done and sent to the Mayo Clinic in Rochester, MN for analysis and staging. The results were confirmed, I have AL Amyloidosis, Stage 2, and Multiple Myeloma. The AL Amyloidosis is in my heart, liver, kidneys, and GI tract. I have just completed Cycle 3 day 15 of weekly chemotherapy treatments and lab tests have shown that chemotherapy is reducing the production of the amyloid and multiple myeloma. The plan is for me to complete a full 6 cycles of chemotherapy and then run tests to determine the level of production of amyloid and multiple myeloma at that point. I am scheduled for a PET Scan next week and have follow-up appointments with my hematologist/oncologist, cardiologist, and bone marrow transplant physicians. We will all reconvene to discuss whether I am a viable candidate for a stem cell transplant after I have completed cycle 6 and the test results have been evaluated. The alternate plan would be 24 months of chemotherapy to put the two diagnoses in remission/complete response and allow me to lead a less painful and constrictive life.

The chemotherapy is painful, and the side effects are nasty, but I am thankful I was diagnosed within 2 months of my symptoms. That is truly remarkable since it is often missed or misdiagnosed. My hematologist/oncologist, cardiologist, and bone marrow transplant physicians are amazing, and their coordination of my care is outstanding. I can’t say enough good things about the care I am receiving at the University of Minnesota and St. Croix Health where I get chemotherapy. My St. Croix Health hematologist/oncologist is Dr. Yang Ji and she is an excellent provider. My only other option for treatment nearby was Mayo Clinic, which is a top-notch provider, however, I wanted to be treated closer to my home in Wisconsin and the cost was prohibitive, so I chose the U of MN. They work closely with Mayo Clinic on amyloidosis diagnosis and staging.

I’m adapting to my new life as Denell with AL Amyloidosis and Multiple Myeloma. My wish to take long walks is unrealistic, but I get out and take short walks as I am able. I enjoy time with family and friends on a much more cautious and limited schedule and avoid crowds all due to my compromised immune system from the chemotherapy. My family and friends have been amazingly supportive and even people that I was never close to in the past have reached out and supported me with cards, gift cards, prayers, helped with errands, etc. Living alone means I need to stay strong and continue to be independent – some days after chemo are more challenging than others. I can go from having a decent day to extreme nausea and fatigue very quickly. I think that one of the most difficult things to navigate is not knowing how I will feel at any given time. Due to GI issues and other complications from chemotherapy, I’m unable to work. I remind myself “Faith over Fear” and chin up - keep moving forward!

I can’t make sense of why I must live with this incurable diagnosis, but I can say I would rather it be me than my children or grandchildren. I’ve lived 65 years and hope to live another 10+, with the help of my wonderful professional team. God has a plan and I’ll follow his lead in treatments and do the best I can. Sometimes the simplest gesture touches one’s heart. I had to ship some legal documents and the woman at the counter asked how I was doing. She heard I was having some health issues from my friend who brought some documents there for me recently. She grasped my hand, looked into my eyes, and said, “Know we are here for you and praying for you”. Wow! These are the remarkable things that remind me of how fragile life is and how good people are!

I look forward to joining the Amyloidosis Foundation and bringing awareness of this blood disorder to others. I proudly wear the shirts/sweatshirts and wristband and I send out the cards sold on the amyloidosis.org website. Learning from others who are dealing with this disorder is important to me.  One of my goals would be to get AL Amyloidosis added to the list of eligible diagnoses to receive Social Security Disability benefits. 

Our June family Myrtle Beach, SC vacation is coming up in 2024 and I don’t know what the status of my health will be at that time. I do know that with more research being done new medications being developed, and the great work being done by the Amyloidosis Foundation, there is hope and for that I am thankful!