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Jul 17, 2018 Latest post:
Jul 29, 2018
Hello Family and Friends! If you are here, it is because you know and love my Mom. What you may not have known is that she has been a cancer survivor for 10 years. She was diagnosed in 2008 with chronic lymphocytic leukemia (CLL) - which is a type of cancer of the blood and bone marrow (the spongy tissue inside bones where blood cells are made).
She went through chemotherapy in 2008, which put the cancer into remission for 6 wonderful years. In 2014, after returning to MN for a summer break from all the sun and fun in AZ, she learned that her cancer had returned. Once again, she was able to put it at bay with chemotherapy.
Last summer, during a routine PET scan, she learned that the cancer was back. By Aug it had increased the size of many lymph nodes throughout her body, and she was experiencing extreme shortness of breath. A new aggressive chemo drug was used, and within 4 days the lymph nodes shrunk back to normal, but by then her bone marrow had stopped working properly. She transferred care to the U of MN Hematology team (and Dr. Uston). Under Uston’s care another chemo was administered, but her body would not tolerate it. Finally, he found the answer… the 3rd chemo drug started working. Last fall involved many weeks in and out of the hospital. When she was out of the hospital she often had to take daily trips to the cities for platelets, red blood, or other things to help her body function. There were many ups and downs, and she was strong and sassy through it all. When her body finally started producing platelets and blood cells on its own, it was such a relief. In Jan 2018, Dr. Uston gave her the O.K. to go to AZ so she could see her sunny friends and enjoy the warm weather she craved.
This wonderful window of time was not wasted. Mom visited with friends and even tried to play some tennis. After about 6 weeks, however the symptoms of her cancer started to reappear. She started having severe bone pain and infections. By March she was back in the hospital with a different team of doctors trying to figure out how to give her another window of time to enjoy life. Thankfully, they found a chemo cocktail (combination) that got her out of the hospital and back to MN for the summer…. Well…actually, she arrived during the April Blizzard, but arrived none the less. Good thing this year in MN we went right from the blizzard to summer! NICE 😊
This latest window of time has been more low-key and slower. Mom continued her 2 chemo drugs, which allowed her bone marrow to do its job. She has been gardening (my mom loves flowers), visiting with lots of friends (my mom loves talking to people, anyone really- she is a “Chatty Kathy”), and enjoying cruises on Forest Lake. Driving was forbidden for some time, but she was determined, and with much work, she gained our approval… so off to the local Walmart or Target she went (more people to talk to 😊).
For CLL, the progress of the disease is measured mostly through a bone marrow biopsy. My Mom has had many of these painful tests. Last fall and again in March, the results were 90+% CLL cells, which means there is not much bone marrow left to do the important blood-making work. In May, after being on the new chemo cocktail for only a few months, the percent of CLL in her bone marrow was reduced to 5! Incredible! Keep in mind that bone marrow that was once riddled with CLL will never be fully functional again…but it was an excellent sign that this window of time would be good.
So here we are in July – and unfortunately, her bone pain has returned and she came down with a nasty bacterial stomach infection that landed her in the hospital last week. Once again, they did a bone marrow biopsy, only this one showed her CLL cells have changed. They progressed into larger more aggressive cancer cells, and there is no therapy left for them to fight the cancer. that was not how we thought last week would end.
Thank you for reading this long review of the past 10 years - glad we are all up to date now. Today we started hospice care in my parent’s home in Forest Lake, MN. I will try to post a journal entry daily, and I hope to share some stories of my mother’s wonderful life.