Thursday, October 22, 2020

25% Done

3 rounds down....9 to go. I’m 25% of the way done with my infusions. I like looking at it that way (thanks for the tip Mom!)

This last round in the chair was super emotional for me. I caught a glimpse of myself in the mirror with my pole on one of my many bathroom trips (thanks extra hydration) and it just hit me. This is my life- how in the world am I getting chemo? Did this actually happen? It felt surreal. 

After I sat back in my chair the tears rolled down behind my mask and I had to pull myself together and then text Trevor. Who sent me this:

Our pride and your courage is about YOU and how you are real, and vulnerable, and compassionate - and that this season is just one more way (sucky way) that God shows you who you are. you are his. you are mine. you are an amazing mom. you are a warrior!!”
He’s the best. 
And then I fell asleep (thank you IV Benny and AirPods). 

This is a roller coaster experience and some days are fun and fine and other days I want off or I want to puke or both. Most days I experience every feeling at some point in the day. 

I am looking forward to my 12 day break and hoping my roughest days are manageable (Sunday-Tuesday) especially since Trevor will be back working on Sunday mornings.

Waiting for my Uber (Trevor and the boys!) 

Sunday, October 18, 2020

Excited about Chemo, Preaching and Pumpkins.

As the days draw closer to my next round I find myself almost excited?!?!  Is that just the weirdest thing? I know what to expect now when I go, I have the BEST support system and I know it means one more round down and one more day closer to being done with all of this.

Don’t get me wrong, I enjoy my week break in between, but I don’t feel anxious going in. I feel hope. Something I thought was going to be allusive this entire process. 
(PS: I reserve the right to change my mind about this at any point along the way!!)

Tomorrow brings a blood draw, appointment with my oncologist (okay that always makes me nervous- I like the PA better) and then another Pre-Chemo Movie Night with friends and family.
If Cinemark stops this before I’m done with chemo I’m going to have an issue!!! Oh and I get my hair cut!! You know, even if I mostly only go to doctors appointments you gotta keep the hairs lookin good.

Tonight I got to teach/preach for the first time since March. I had a lot of anxiety going into it because 1) it’s been so long 2) I haven’t really been around many people and was feeling social anxiety for the first time in my life 3) They are preteens #enoughsaid 

It was awesome. I had no anxiety about being around people (all were masked and did a great job distancing and we sanitized before and after) and as soon as I began speaking my nerves were calm. I loved seeing faces (eyes) of people I hadn’t seen since March and watching my oldest laugh and be around friends (he’s really really really struggling). 

I say teach/preach because with this age group and the content I was definitely able to approach it more like preaching which is something you don’t get to do with the younger kids as much. I came home tonight feeling like myself for the first time in months and months. Feeling that affirmation that I am doing what God has called me to do- which is to preach and teach the Word so others can find and follow Jesus. 
I cried with joy when I came home and told Trevor “I’m exhausted - but all my cup is so very full” 

Here are some pics from the last week and the “good days” 

Preteen Group
How is he in 6th Grade?!
Carving Pumpkins followed by a fire and s’mores
Pumpkin Patch!
We like to go- get the pumpkins and leave. We aren’t really into the “festival” side of it- even before the CC Double just felt like too much! 

Friday, October 16, 2020

Celebrating Every Win

When my Mom was going through treatment for breast cancer, we celebrated every win. We had  a party any chance we got. From surgery parties tto finishing parts of the treatment plan parties and so on. Because it was so long ago (yay!) and COVID wasn’t around we got to have little mini parties in hospital waiting rooms too. I remember showing up to one of her surgeries in pink fuzzy flip flops along with others just because it made her smile. 

My Mom and I are a lot alike, but in this scenario after my diagnosis, I wasn’t feeling the same. I didn’t want any sort of parties, I didn’t want to celebrate anything. I was so angry I couldn’t imagine finding anything to be happy about. I didn’t want to feel like I even had to pretend to be joyous. I’m authentic and genuine and I can’t fake it. I couldn’t post a smiling “I’m gonna beat this!” pic for the life of me. She reminded me that it was okay and it was my own journey and I didn’t have to do it the same as she did. I needed to be me, and get through this whatever way worked for me. I didn’t even want to see a stupid blue ribbon for “my cancer”. I didn’t want to talk about ribbons. I was not in a space where I was able to  find  anything good anywhere. 

But, truth be told, my family likes to party. We like to celebrate little wins and big wins ALL YEAR LONG. Made it through a hard week? Let’s rent a movie! It’s fall?! The best season ever?! Let’s have a fall celebration and walk around Jacksonville in the leaves and get apple cider and a pumpkin candle. It’s your birthday this month? Let’s find little ways to celebrate you ALL MONTH LONG!
What can I say, we get excited about all the things. It brings us joy. Like I said, at first I didn’t think I could find any joy in this situation but God has been faithful to bring me joy in so many ways. Slowly I warmed up to the idea of embracing parts of my new story and then looking for ways to make them bearable, to make them attainable and then to celebrate the heck out of getting through them. 

So my guys made a paper chain for every day of radiation, with encouraging words inside and at the end of each week (5 in total) we did something to celebrate. Maybe it was ice cream or maybe it was a movie night but we did something. And our boys got $10 Amazon cards at the end of each week too (thanks to my Amazon Wishlist Buyers!) 
When I finished radiation and oral chemo we went to the coast for two nights. Best. Ever. 

When my guys pick me up after I get Poison Ivy removed (the name I gave my chemo pump) we go get a fun drink from a coffee drive thru. It’s something we can all look forward to and say “Hey! We made it through another awful no fun thing and we did it together and we are alive and let’s choose joy”.

I had my first follow-up with my Radiation Oncologist yesterday. I can hardly believe it, but it’s been 7 weeks since I wrapped up that phase and the appointment snuck up on me. 

I was given a full physical in addition to the standard post-radiation questions and at every one of my answers or checks he said “Wow! This is awesome! This is amazing, you’re doing so well!” 
I have no lingering side effects from 5 weeks of pelvic radiation. That apparently is quite amazing. Everything looks great as far as that part of the treatment goes and he and his nurse both said I’d made their day! Talk about a shot of encouragement and joy! 

So, I took a smiling selfie....
 (Can I just pause here and ask, why do people apologize for selfies? I want to see my friends faces online and usually the only way that works is by taking a selfie! Why can’t you say, I feel great or I’m happy or this is me and take a picture of yourself? Stop apologizing for selfies. Take more.) 

ANYWAY- I took my masked selfie in the room and then I walked out of there with a little bounce in my step (which felt great after four really rough post-chemo days) and took myself to Hobby Lobby. 

I have been in a grand total of I think three or four stores since COVID hit- and two of them have been in the last two weeks. When your oncologists and doctors and nurses tell you to stay away from people and places because your immune system is shot due to chemo and there is a (not fake) pandemic that preys on weak immune systems- you listen. But also, I have to find ways to take care of my mental health, so it’s been a balance in doing some things cautiously like: private showings at the theatre with friends and masked socially distanced coffee dates in my backyard. And not doing other things at all like, not going into work because I don’t have an office I can be self-contained in to do my work. Or doing most meetings from ZOOM because they are often held in smaller rooms where exposure is greater. And also not frequenting stores where people are touching everything and not wearing their masks over their dang noses!!!! 

I digress. 

So I went to Hobby Lobby and walked up and down nearly every aisle just for pleasure. And then on my way home I grabbed a peanut butter milkshake from one of my favorite coffee places. To celebrate. To celebrate a doctors appointment that didn’t make me feel anxious after I left. To celebrate good news and happy doctors and another win in this stupid cancer fight. Next month I have chemo ON my Birthday and you better believe I’m already planning on how to celebrate.
(I’m sorry, but you CAN still tell when people are smiling with a mask on. Real smiles always show in the eyes anyway) 

Tuesday, October 13, 2020

On Elephants and Bitterness and Not Being Wonder Woman

Instead, call me Mara, for the Almighty has made life very bitter for me. I went away full, but the LORD has brought me home empty." 

I decided after my diagnosis this was my new life verse. I was angry, I felt abandoned by God, I felt forgotten. I felt like prayer didn't matter...prayer was a shot in the dark. I'd seen faithful people pray for healing and their loved ones die and others lived. Why? I don't believe it was because someone prayed more than someone where does the answer lie? Is there a point to prayer other than getting close to God, and if that is the only point then why are we praying specific prayers? 

I could not open my Bible. My ground was shook and I did not know how to recover. Was my faith so brittle and weak I could not withstand this? Had I been fooling myself this whole time? How am I a Pastor if I can't even imagine moving forward from this still trusting in God?

I wept. I wept harder than when we lost our baby, when my husband's best friend died, when my Grandpa died, when we said goodbye to our foster daughter.... I could not breathe. I screamed and yelled. My doctor called me in two anxiety medications that I began taking immediately and I started seeing a therapist consistently for the first time in my life. I didn't leave my bed for days. I didn't eat for days. I did not return calls, texts or post anything on social media. I didn't want to talk about it. I just needed to be angry. 

I yelled a lot at God. My Mom always told me it was okay to because at least I was still talking to God. That's the only line of communication I kept open for quite awhile. I let others pray for me, letting them know it was fine if they chose to but I wouldn't be participating. I did ask them to pray for specific things I just could not find the words to pray for myself. I couldn't sleep. I had flashbacks from my traumatic surgery and hospital stay and hearing the words from a doctor with terrible bedside manner. It all replayed over and over and over and I got angrier and angrier. 

Mercifully those days grew farther and farther between. I did not think they would. There was breakthrough. There were specific answered prayers that others prayed for me. There was the patience of my husband and kids and my Mom who sat on my bed and cried with me, who brought me over a booklet of verses about joy because that is the one thing I was asking for. I needed to feel JOY again. I desired to feel HOPE and I could not find it. I discovered Scrabble on my phone was a great distraction and my therapist incorporated it into my plan. Slowly things began to level out but it isn't perfect. 

I still have questions and doubts and anger. I still don't know all the answers to my questions but the one thing that has changed in all of this is that God brought people to me.

 God brought them in like a thundering herd of elephants. 
Do you know how emotionally intelligent elephants are? They surround one another while one is grieving, they look after each other and don't leave one another alone. They stay in communication with one another. "They reveal a creature that weeps, revels, rages and grieves." My tribe came from nowhere and yet everywhere. They were quick and eager. They surrounded me and my family, they have done the praying and the caring and the loving and the trusting and they have been God's gift to me. Some I have never met. A pack of elephants if you will, raising up their trunks believing in things for me and raising the battle cry. Rise and look up and see the goodness before you- God is still at work. 

Do I know God is good? Yes I do. Do I forget that truth sometimes? Yes I do. 
But when I forget, when things get hazy and I lose sight, I force myself to look back at what has already happened. I look back and see what God has already brought me through and that is how I keep going. I have belief that God has never once abandoned me even if it felt like it for a moment. God has never once forgotten me even if in a moment I felt silence. Even if for a moment I felt my life bitter. 

I write all this very transparently because I want you to know this has been a struggle. I may smile though my chemo treatments and put on a brave face but it is because I don't really know how else to do it. I don't really have a choice. I do not feel tough, I just do not have a choice but to do it. I wear my Wonder Woman masks and shirts not because I feel like Wonder Woman but because I am willing some kind of Wonder Woman gusto to help me forge on. I want you to see that it is okay to fully love and trust God and still have questions and that sometimes those questions will not be answered and that it is okay to land in that tension. I want you to know that Pastors grieve and deal with anxiety and depression and need praying people for their battles too and I want you to know that you are not alone either.

Monday, October 12, 2020

How we COPE

When you and your caretaker are both working from home (him more than FT and me 30 hours) and you have three kids doing school online (2 different grades) and you’re going through chemo AND continuing to take courses to fulfill ordination requirements DURING freaking COVID.....

You find ways to make your life safer and easier if at all possible.
For us that’s looked like:
Masked up all the time around everyone but my parents. Even outside. Our boys do not push back at all.
Socially distant meetings or hangouts in our backyard with masks.
Nobody coming in our house by my parents.
Shoes off when inside.
Multiple times a day sanitizing high touch places.
I don’t go out often.
Trev does as much from home as he can and he is the one who goes into stores unless we can use Instacart which we do most often.
We bought a HEPA Air Filter (named Scourgify) for our home that does the full Shabang from allergens to dust to smoke.
We purchased a better robot vacuum (Locomotor the Roomba) because that’s one less thing my husband needs to do.
Our boys have chores they do daily that help keep the load off of Trevor and I (mostly)
We have had dozens of meal gift cards sent to us.
We have a meal train.
We don’t have our kids attend every Zoom for school. We just make sure they are doing their work and help them when they need help. Which is a lot right now but hopefully will settle as they adapt.
If I could get a robot lady like the one from The Jetson’s I would do that too.
My Mom takes me to my chemo and picks me up.
My Dad does store runs for us, bbq’s for the boys, basically will do anything we need (like checking to see if our washing machine is dead )
My guys take me to get my pump removed.
We celebrate pump removal with a special drink or some fun treat each time.
We are trying to go to the movies every Monday the night before my chemo with friends.
We never say no to drop-offs of any kind as long as you’re okay with most likely not seeing our faces
This is what it looks like to do what you have to do to get through a really crappy situation.
PS: can you tell I’m a HP fan?

Tuesday, October 6, 2020

Chemo Round 2

Finally home after a LONG day. Was not prepared to be gone all day- lots of delays due to emergencies with another patient (she is stable in ER now) In bed with my pump on for another two days.

My appointment was at 9:50am but I did not get hooked up until 11:15am. While it was a long wait, there was a sweet woman who was struggling with other things and all hands were on deck for her. I did love watching the care and concern and detail with which the department took care of her. I do hope she is okay. 

I also asked for an extra bag of hydration this round because of how hard it was for me to get fluids the first days after chemo due to the cold aversion. That takes longer and I did not realize that. I didn't come prepared with enough nutrition so that is a lesson learned. Pack more food than I think I will need! All in all it went well, although I didn't have a nice view out the window this time. 

Loving my new shirt from my Mom. I think I shall wear it every other Tuesday and then on my LAST chemo day, wear it under a sweatshirt and then bust it open as I run out of the building!