Kate’s Updates: May1: Last Radiation Treatment and Going Home

The bible says that the flood lasted 40 days, Moses stayed on Mount Sinai to receive the 10 commandments for 40days, Jesus fasted for 40 days and lent is 40 days…..seems about right that on May 1, after spending 40 days in MN, I was able to go home. Not only that but it was the feast day of Saint Peregrine, patron saint of people with cancer. Yes, that right May 1 three days earlier than we originally thought! During my second to last week of radiation the radiation oncologist was able to schedule me to have two treatments in one day so that we did not have to spend a weekend in MN just to finish treatment on a Monday. Oh my GOSH it feels so amazing to be home.

On Friday, May 1 I rang the bells! I completed radiation and had my moment of being “clapped out”! What a great feeling. After 46 “ZAPS” in 23 days- I was done! My appointment was early because of our afternoon flight out but I still had my usual “team” there with me. The rules of social distancing do not apply when you say goodbye to the group of techs that put you in position for almost every treatment. They were my local support team. They literally saw me at my worst (the no chairs in the waiting room)! They always managed to put a smile on my face no matter how bad the day. It was weird knowing I will never (God Willing) see them again.

The week leading up to returning home I had so many emotions, I am not sure I will ever be able to truly express what this has been like. The days preceding our departure I felt like I was finally able to let my guard down. I no longer had 6 weeks of being away from home ahead of me, 23 days of radiation were coming to an end, 2 cycles of chemo were over and I could count the days until I was home on one hand. Everything I had known about undergoing cancer treatments revolved around being isolated. My days were no longer going to be filled with just coloring, walks, naps and radiation! A part of me became a little anxious, what was it going to be like at home? And by “it” I mean everything! Cancer treatments, new oncologist, Covid restrictions, expectations (mine and others of me)? I finally allowed myself to feel some of the emotions about two days before leaving, but I was not home yet and still had to man up and push on until May 1 at 2pm.
Packing up was funny….Eric just stood there shaking his head at me as I figured out a way to get all the goodies my amazing support system at home had sent me! He could not believe how much stuff I had accrued while we were there. It was pretty spectacular to look at the pile of gifts and "fan mail" that had been sent my way. I am pretty sure I thanked every person individually for the letters, cards, gifts and messages but let me just say it one more time THANK YOU. You have no idea how much your love and support helped me while I was in MN.

Now.....on to our flight home!! Naturally getting out of MN did not come easy…..Our flight out of Rochester was cancelled twice so we had to fly out of Minneapolis Airport. After an early morning radiation treatment, we rented a car and drove and hour and a half to the twin cities to catch our flight. Minneapolis to Charlotte was easy. MSP airport was not crowded at all and the flight was only about half full. The “fun” started when we arrived in Charlotte. That airport was crowded! Like really crowded and less than half the people were wearing masks. The airport had more travelers than Chicago O’Hare on our flight out to MN and there was not even a stay at home order in place at that point. And the flight….. it was FULL! Every seat in coach was taken. I almost had a panic attack, what on earth were so many people doing traveling? Eric and I were so mad. When we booked the flight (the week prior because of all the changes after cancelations) American Airlines was not even able to assign seats on the Charlotte to Norfolk flight because of social distancing and regulations that were in place. They told us that seats would be assigned at the gate. FALSE, there certainly was no social distancing on that plane. After pleading with a flight attendant, I was able to move up to first class where no one was sitting next to me- not even Eric (I left him in coach). We landed and got home just around 10:30pm and the kids were shocked!!!! It took all I had not to just grab them both and hug them as tight as I could. However, because of all the exposure traveling Eric and I decided (ok ok Eric decided I just had to agree) it would be best to make sure I showered before embracing the kids and my parents. That was one of the hardest things I had to do through all this. I mean come on I had not hugged my kids in 6 weeks! I did not think I could wait another 5 minutes but I did and then we hugged each other so tight, I did not want to let go!

Its been nice to be home and be close to the beach. The ocean has always been a place of healing for me so my soul feels rejuvenated. And my goodness It is amazing what a difference sleeping in your own bed makes, I have not slept this good in a months. Having all the luxuries of being in my own home has been wonderful. I am trying to navigate the routine of "home school" and attempting to find a balance between resting/recovering and being present with the kids.

I finally got to participate in the court pledge of allegiance which was super cute (see picture below). While we were gone D and Ry started doing the pledge at noon for all the kids on our court, they bring the flag to the middle of the street and all the little kids gather around- its adorable.

I am doing my best at restoring some normalcy in the kids life too. D and Ry have not only not had me around for 6 weeks, they have not seen me healthy in 4.5 months. I want to do things with them that we have not been able to do. We have been down to the ocean front to walk the boardwalk, walked the beach at Sandbridge and even masked up and walked the trails at First Landing State park. Hopefully the surf will improve and I will be able to get D out there to catch some waves soon. I have probably been doing a little too much and not resting enough because come 8pm I am done! I am unsure if I sometimes forget or simply chose not to settle down and rest. I think a part of me feels like now that I am home, I am not “going through” everything anymore. How do I go from a situation so completely bizarre to being home and carry on like nothing happened? I know its something that I must process and deal with but again, I am not sure I am ready to do that until chemo is done. Eric tries to remind me that I need to slow down and relax, allow myself the opportunity to heal and process everything. He reminds me that my body has been through hell since December, I between fighting hyponatremia, being hospitalized twice, surgery, undergoing daily radiation, and I am in the middle of chemotherapy. I guess I should start listening to him.

My parents went home this week. My mother, my saving grace, has been at my house since January 7! She told me that day she was not leaving until she felt like I was better. I am not sure, actually I take that back, I know there is no way on earth we would have been able to get through all this without them. I can only imagine how difficult it must have been to walk away from their home and life to come help me and my family for almost 4 months. I am sure they are enjoying the peace and quiet...or are they??? LOL

This week we met my new oncologist who is great. Eric and I really liked him. It was a seamless transition of care. Dr Franzman, new oncologist) had spoken to Mayo clinic and knew everything about me. Without even looking at my chart he knew the dates of my surgery, first and most recent round of chemo, my allergic reaction, the changes to medication dosages that were made, the start and completion date of radiation and everything in between. Super refreshing not to hash out all the details! He ordered a bunch of labs just to see where I was with all my counts and my CBC looked good. Yes, everything was low as expected but neutrophils were at least 1.4! Dr Franzman hopes to increase the etoposide at least up to 5 pills for 3 days now that radiation is complete and my neutrophils should be a little less affected. As of now we are on track to resume chemo May 15-17 and then finish June 5-7. The office is different then Mayo, apparently there is only one infusion room where every patient sits together. At Mayo everyone had a private cubby like room with a TV, heated, massaging recliner and a curtain for privacy. Also, no visitors here! It blew my mind when I heard that no one can be with me during treatment. Sure will make for a long boring day! At least I only have two cycles left.

My hair is still shedding like crazy, it is still messy and annoying, and now has patches of bald spots...super attractive. I have been wearing a hat and doing a comb over pony as best as I can. Because of having to take the Etoposide orally the hair loss has not been as rapid as they suggested. I never in a million years would have thought I would have to "decide" when to shave my head. I assumed it would be obvious and that would be that. Thanks stupid cancer! The oncologist highly suggested we cut it much shorter but doing that would make my new come over style a little more difficult. My headcovers arrived the other day so I think this weekend we will do it- Happy Mothers Day to me.