I spent the last week processing the past 6 weeks.  It’s funny how you think the time goes so slow but now when you look back, how fast this went.  It feels like a big blur.   But as I was processing everything, I learned so much about myself.   As hard as the challenge was, there were little golden nuggets that make me who I am now - what I am trying to say is - if I didn’t go through this, I wouldn’t have learned new things, made mistakes that helped me grow and the darkest times showed me the courage and strength I have.  

As I was preparing to share this episode,  I struggled at first but I know you can benefit from some of my thoughts, experiences and lessons learned.  It feels a bit uncomfortable.  Some of these are hard to share, some feel braggy and some feel selfish.  But if caregivers don’t share these, we'll think caregiving is all unicorns and sunshine. 

We all walk into each caregiving experience with little, to no experience or practice.  No matter if you're a new caregiver or a veteran, each experience or struggle is different.  

As much as we do research, plan and prepare, we really don’t know what is coming, how we will react or perform. 

In November the pet scan revealed his cancer was back.  Both Non-Hodgkins and Hodgkins.  The 3 chemotherapies in the past didn’t stop the cancer and we had to move to the stem cell transplant.  The process started in December with two rounds of chemotherapy, then another pet scan and then to Froedert Hospital for the transplant journey.  Influenza A pushed back the transplant, but we arrived in Milwaukee on January 14.

Prior to leaving there was so much to do.  

• Preauthorizations
• Disability approvals
• My work changes
• Finding help for the dogs/ house
• Moving appointments around
• Planning and Packing 
• Research 
• Where were we going to stay
• Nutrition 

We had to plan for 6-10 weeks.  It wasn’t like the excitement of planning a vacation.   Although, I did a lot of googling about where’s the nearest grocery story, Target, gas stations, etc.

We were lucky enough to get into Kathy’s House which is a non-profit lodging facility.  So I connected with their web-site and did the virtual tour to get a visual and we received an email with more information from our guest coordinator. 

We also connected with the transplant coordinator. She mailed us this 2 inch binder which was extremely helpful but very overwhelming.   

As the day got closer, I started grieving the things I was going to miss. My fur babies, my mom, my kids, my grandchildren, my home, my bed and more.  I really didn’t enjoy the last few days since I was so sad.  

On the drive down there it felt like a  I was in a fog.  I thought: I don’t know what the next hour looks like, the next day looks like, the next month looks like.  It’s funny, we really don’t know that today either but it was all magnified.  I was nervous, fearful and didn’t have any control over the planning now.   

We drove into the driveway at Kathy’s house which was gated.   We found our parking spot and walked in. We had to bring in our covid test results, drivers licenses, and be fully masked when entering.  The door was also locked and needed a card and then the door opened to smiling faces and welcomes.  It felt like everything was going to be ok.   In next week’s episode,  I have Patty, the CEO and President as our guest on the podcast sharing more about this amazing home-away-from-home, Kathy’s House and how they provide support and help to families. 

We got checked in and moved into our room.   Kathy’s House was amazing with: 

• A beautiful room (stocked with tp, toweling, wipes, blankets, comforters, bag of goodies, refrigerator, soaps and sanitizers)
• Four kitchen areas and we had our own pantry locker, shelf in the big refrigerators and freezer. 
• A laundry room to wash our own clothes, towel and sheets with free detergent and dryer sheets.
• Work out area with treadmills, weights and stationary bikes

The location of Kathy’s House was great since Froedert Hospital and The Cancer Clinic were right across the street.   

Once we got to Milwaukee though, we weren’t prepared for the Clinic app.  All of a sudden, we started getting weeks of appointments pop up on this app as we're driving.   It told us what appointments he had, were we need to park, what elevators to use and what floors we had to go to.   Eventually I appreciated their organization and the app.  

Then you get to the clinic, centers and hospitals.  This small town girl was a bit overwhelmed with the large waiting rooms with tons of ppl (I would sit there thinking, all of these folks are sick, each of them have a story and caregivers).   Sometimes the waits were short, other times long.   Every visit required covid screening - even if you answered all the questions at the parking gate.  Some days nothing would bother me.  And then on other days I would get annoyed at the simple things, such as mask wearers or people talking on the phone with the speakers on.  

I am just going to come out and say it.  After 5 long years of this, I don’t like waiting rooms, doctor’s offices and clinics. I appreciate them but would just prefer sitting on the beach with a good book.  What do you do to make use of your time?  Journal? Read? Games on your phone?  I find waiting to be the most exhausting time.   I would always pack my food and water but sitting makes you so tired.  Sitting tells your body to slow down and take a nap or go to bed.  It’s called sitting syndrome.  Our bodies are designed to move every 20 minutes.  So I started walking every 15-20 minutes when possible.   

Denis did his entire transplant outpatient.  Which meant he had to be at the day hospital each day for 4 weeks straight (weekends too).   This required all other caregiving was at Kathy’s House and I had to take care of him.  Monitoring his fluid intake and vitals.  He had to stay isolated which means I had to cook his meals and bring them to the room.  I had to assist with his showers since he was weak and had a line in that needed to be wrapped each time.  Just to name a few.  

So after his stem cell infusion, his visits were labs, doctor and replenish whatever he needed.   Eventually I made the decision to drop him off and pick him up.  I had the app to give me the lab results, doctor notes and what fluids he needed that day.  I was right across the street so if there was anything he needed, I could jump in the car and be there in 5 minutes.   I also had to keep his room germ free which required thoroughly cleaning it each day.  I could do that while he was being seeing.   If I didn't drop him off that was 24/7 caregiving for me and I knew I would burn out. I also was working my job from the room so that gave me some quiet time to get things done.

Isolation meant staying in the same room with my spouse for 6 straight weeks.   We were in a 20x20 room with one tv, one bathroom and listening to him snore or get up throughout the night.  We joked that one of would not come out of this alive.  

The days brought me many emotions and challenges.  I worried about his healthy, my mom and fur babies.  I felt guilt for not being in his appointment but knew this was the right choice for me.  I already talked a bit about my frustration and anger.  Those would pop up more when I was tried or stresses.  I also felt like everything was about my spouse and missed feeling special.   I was so lonely at times for my family and friends and social interactions.  I also yearned for my own time and space.  I would sneak away to the grocery story or Target for a break to recharge.  

Self-care was my constant.  I knew that would keep me somewhat stable during this time.  I walked the hals and outside.  I journal each day and focused on gratitude.  I Facetimed my Mom and kids.  I had Zoom calls with my business coach and accountability partners.  I also tried to focus on eating healthy and staying hydrated to keep my energy level up. 

I struggled with be tired all the time.  Your stress, anxiety and lack of interaction can mess with your fatigue.  I became bored and stir crazy but found that coloring, knitting and streaming movies helped.   

At about 3 weeks in,  I grieved my home, my old life and started to become resentful.  I had to walk more, play more music and get outside as much as I could.   

As I close, I had to keep telling myself this wasn't permanent. I learned that I had to focus on what I could control which was my own self-care and attitude.   I had choices each day to be the best I could be.   So I chose gratitude and focused on that each day.  It's ok to have sucky days as long as you don't stay there.  Focusing on positivity and what's going well got me through those very dark days.