Cycle Three Psych

I am a little behind on my updates since getting home, I have been soaking up my kids and enjoying the normalcy of being home. Last week was supposed to be Cycle three of chemo!  To be honest I was more nervous then I was for the first day chemo!  Here at home the Covid protocol is different than it was at Mayo.  Shoot everything is different.  In MN Eric was allowed everywhere with me. He was able to be at all my appointments and each chemo and radiation treatment. At home, I was told he could not be with me for treatment and that I would have to go “alone”. No one was allowed with me for the 6-8 hours of chemo treatment. I was worried about them messing up…. not giving me the same “line up” of meds, which was silly because we already went over all my meds and Dr Franzman said they were using the same meds as Mayo.  I worried about what to expect, would they have recliners, blankets, TV, and most importantly snacks??? It sure was different but it was not horrible. Instead of having a private room for treatment, the set up was a semi-circle of recliners around a nurse’s station. They did have warm blankets (my Fav) and offered me drinks and snacks. I was not able to assess the snack situation because I was not there long enough. Unfortunately, my bone marrow was even more suppressed than last time. My neutrophils were 0.7 and we had to delay treatment by one week. This time, however, since I was done with radiation, medication could be given to help boost neutrophils……nonetheless it was too late in the cycle to do it, It would have to wait until I rebound on my own and finish cycle three.  Naturally, there was a minor problem with the timing of that. I will have chemo Friday, Saturday and Sunday and the injection should be given 24 hours after the last dose of chemo…..which is Memorial Day and the office will be closed. There is a way that they can attach a device to me on Friday and program it to deliver medication on Monday but that method would not allow any dose adjustments. My oncologist would prefer to not give me the full amount because based on my weight it may be more than I need and the medication at the correct dose already causes significant bone pain since the medication penetrates the bone marrow. After some figuring he determined it will still fall in the window of efficacy if I go in on Tuesday for the injection. SO that is the plan, stay tuned! Here is hoping that the injection will work and I can get cycle four, my final cycle, done three weeks later.  All this neutropenia keeps setting my chemo completion date back!

Quick note on no patient visitors during treatment.....At my meet and greet with Oncology here the doctor mentioned that this policy may continue after Covid.  I think that when I am done with my treatments I will let him know my thoughts on that. I worry that doctors and business will continue with stupid protocols that were put in place because it is easier.  Sure it is more convenient to limit or restrict visitors but what does it do to the patient? How many hospitalized patients do you think died because "social distancing" guidelines?  Was there an increase in deaths because of loneliness?  Interpersonal relationships do so much more for patients then what meets the eye. Connecting with people increases oxytocin, the feel good hormone. Human touch and being surrounded by loved ones acts as a health benefit and that can not nor should not be ignored. 

On Saturday, May 9^{th (the day after my last post)} I pulled the trigger and had the kids and Eric shave my head. I can not believe how much strength I was able to draw from my children. My heart was in my throat and my eyes filled with tears as I heard the scissors cut through what was once my ponytail. Just when I felt the salt from my tears hit my cheek, I looked at Dylan and Rylie’s face and did not see fear or pity or sorrow- I saw smiles! Smiles! What the heck. If they can watch their mom lose her hair and laugh about it, then why should I fight back tears??? We ended up having a great time with it. I have to say, its been so nice since shaving it. As I mentioned before, it was shedding horribly and became annoying to deal with. The bald spots were getting harder to cover with my comb over pony. With my new "do" I no longer have a daily reminder of the chemo in my system and it is very liberating. It has not been liberating in the way I thought either. I initially assumed that shaving it would be like giving cancer the middle finger, but it is so much more. Shaving my head gave me myself back, does that make sense? How can looking completely different make you feel more like yourself??? But it did. We have a lot of good laughs about my bald head. Eric thinks now that I have no hair, I should get a cancer discount- 10% off. Lol.🤦🏻‍♀️ I mean we can not get AARP discount, we do not have AAA and neither of us are military so why not. He also has used my bald head as an excuse to shave his, so now we are twins.  The kids say I wear it best!

PS. Team Zebra (as we like to call my support system) has continued to amaze me. I think I am going to do a photo blog soon since a picture is worth a thousand words! My neighbors, who I barely have even had the opportunity to get to know,  have been terrific.  I have had dinner dropped off and gifts sent over since being home, not to mention all of them cheering me on everyday!

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.

Ringing the bell with My ROCK! 

Gift from Radiation oncology

My Radiation tech team

The kids gathering for the pledge