Bailey’s Story

Site created on January 22, 2022


Well, here we are. Everything has happened so fast - so bare with me as I try to write this as accurately as possible.  

Beginning January 14th, I wasn't quite feeling myself. I was feeling weak and was out of breath from everyday tasks like carrying Ezra. When it didn't go away after a few days, I knew something was off so I scheduled a virtual visit with my doctor on Wednesday (1/19). She seemed confident it could be a thyroid issue and ordered routine labs the next morning. By Thursday (1/20) afternoon I received a call from my doctor to head to the ER because my platelets were low and the hematologist saw something "concerning" under the microscope. 

My parents quickly came over to watch Ezra and our pup Marge and we headed to the ER at Abbott down the road. The ER was ready for me and I was able to go in right away - but because of COVID cases right now, I had to go in alone. (Get vaccinated, please.)

Alone and anxious I was bombarded with pokes and prods and tests and questions. It didn't take long for them to tell me I wouldn't be going home that night but I'd be moved to a hospital room instead and would need a bone marrow biopsy first thing in the morning. I was exhausted from the procedure and finally able to get a little bit of a nap. 

When I woke up, there were multiple people in my room and two of them were sitting in chairs close to my bedside and my heart sunk. No one sits down for good news. 

Acute Myeloid Leukemia (AML), blood cancer. 

In what is still a blur - I was told my diagnosis, that I would have more detailed results by Monday, but they'll be keeping me for a month and beginning chemo as soon as possible. Pending how 4 weeks of chemo go, I may also need a bone marrow transplant. Most overwhelming of all: because of COVID, they're unsure how often I'll be able to see Joe, Ezra, or my parents. So for the love of me, please get vaccinated. 

It's Saturday morning (1/22) and my nurses fought hard to allow Joe a quick 2 hour visit, but Ezra wasn't allowed. I have no idea when I'll be able to hold my boy again or hug my parents. Navigating this is going to be difficult - but not being able to see my family is making it so much harder. I know I have an amazing support system out there and thank you to all of you who have already begun stepping up. 

I've got a hell of a fight ahead of me, and we will use this page to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement! 

Newest Update

Journal entry by Bailey Zimmermann

Wow, today marks 550 days since transplant! So much has been happening. Here are some highlights:

Health
- Still cancer-free, YAY!
- Had a very rough Feb/March due to the final taper of my tacrolimus, but it's finally done! I'm no longer on an immunosuppressant 😁  
- Still struggling a bit with the hormones I've been put on, mood swings, appetite issues, etc. 
- My numbers were great at my last appointment, and they even moved me from monthly labs to every 6 months 😊 
- After all of my treatments, I'm now at a significantly higher risk of developing breast cancer. This means I'll be getting annual mammograms and MRIs to keep an eye on anything. It gives me a bit of relief knowing we should catch it quick if it were to ever arise. 
- Strength is improving! My hand dexterity might be the most frustrating mobility issue I've had, but as of last week I can finally open the 'easy tear' Amazon packages - so I'm getting stronger. 
- Fatigue is still my biggest battle. It's tough because it's unpredictable. Some days I'm wiped after a short walk while others I can be moving throughout the day but then it hits like a ton of bricks at night. 
- I've had some recent skin issues pop up, that we're hoping will start to go away now that I'm off one of my meds. I'm hoping it's just a side effect and not GVHD - but I've got some steroids to treat it for now, and if it doesn't improve soon we'll reevaluate. (Not so fun fact: GVHD can essentially show up at anytime post-transplant, and in a large variety of ways. This is something I'll have to be careful to watch for throughout the rest of my life 😕 ) 
- Eye sight is quite a pain. The cataract surgery helped, but now I essentially need trifocals based on my vision tests, but get by with reading glasses. Staring at a computer for work is tough but I've been taking more frequent breaks and I also got a handmade beaded glasses chain (thanks Steph!) to make the constant on/off of glasses a little less annoying. Living my true Golden Girls/Sophia fantasy 😂 
- Brain fog and memory issues are common after chemo, ask any cancer patient. It impacts me daily but I've been trying to give myself grace when I have those moments and remember all that my body has been through in such a short amount of time. 

Work 
I have been back to work since early last year, but am now in the office about three times per week. Having 'normal' human interactions with adults has been fun and exhausting. I'm happy to share that I received a promotion on April 1st to Senior Trainer 😀 I couldn't ask for better coworkers, or a more understanding and wonderful manager. 

Family + Life 
Since my last update, we got a kitty! His name is Luigi and we rescued him from the Tri-County humane society up in St. Cloud. He has been the best addition to our little fam. Him and Marge are like true siblings - playing tag and running around the house one minute, then snuggled up together by the window the next. Marge is in a much better mood, and Ezra loves his fur-siblings. 

Speaking of Ezra - he's great! He's 2.5 now, loves to go to tumbling class, loves jumping on his trampoline, and loves making everyone laugh. We've slowly started potty training and he will be attending preschool in September a few days each week. 

I've been participating in some more AYA Cancer groups recently. I was part of a pilot program with Gilda's Club where we did a 4 week workshop on transitions: life, medical, etc. It was a great experience and lovely to connect with other AYA Cancer Patients experiencing some of the same unique challenges that come with life after cancer. I have also been attending Tough Friends Art Club where AYAs meet and work on an art project together and play games. It's lead by one of the first people I connected with in the Cancer community, @ohyouresotough. Who, by the way, makes the most amazing cancer content (both online and physical merchandise). You can find her shop on Etsy and she has amazing cards, shirts, and other gifts that any cancer patient would appreciate. 

Looking Ahead
I've got quite a few exciting adventures planned this year: two trips to North Dakota, a camping trip in Wisconsin, 2 different weeks up at C.O.P., camping down in Iowa, and of course visits to Milwaukee. I'll have another bone marrow biopsy come October to confirm that the cancer is still gone - but until then it's staying on top of meds, continued appointments, and trying to stay as active and healthy as possible - but with plenty of rest. 

I'm looking to share another update in June after my next appointment. Hopefully it will be another post like this, with the all clear as far as my numbers go!

Until next time <3

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