“Our greatest glory is not in never falling, but in rising every time we fall.” – Confucius
I had to write a quick update and post it today so that no one would think this post was an April Fools joke. You know how a snow globe can look so pretty and perfect and then you shake it up and it looks different- maybe prettier maybe messier......Thats kinda where I am..... I was carrying on as normal as I could and then someone came and shook my globe. Terrible comparison, I know, but Its all that comes to mind- and seems better than a tsunami analogy.
Its been 3 weeks since I last updated and since then we have had some really good days and really bad ones. The best day has to have been March 20- Half Marathon day. Although I woke up not feeling too great nothing was going to get in the way of running and finishing the Shamrock Half! I had been running a lot since the summer and after completing a couple 10 mile runs easily I had it in the back of my head that a half would be a great way to give cancer a big FU! Especially since race day fell one week prior to the anniversary of chemotherapy starting. Obviously that was before the cancer came back and before a doctor said I would not be running it this year. SOOOOO clearly I was doing this and clearly it was going to be an ever bigger FU!!!!
Let's take one quick second and recall that when I actually registered for the event no one was interested in running it. Lol!!! Except my cousin from out of state and Nicole who ultimately registered for the run. Poor Nicole thought she got a free pass out of running when 6 weeks prior the cancer returned And 2 weeks prior I was still at Mayo. Not so quick Nicole! 😂 All of a sudden people were lined up willing to come run some or all of it with me. My cousin and his wife even ended up officially registering for the race despite it being sold out (they played the cancer card)and traveled from PA to run it with me. It was an incredible surprise. Before I knew it there were #8forkate running the half. Because of COVID, the course was not closed and participants could run at any point during the weekend along the course. There was a start and finish line with music and time chipped sensors (that didn't work well at all) so it was as close to a real event as we had seen all year- and it allowed for everyone not registered to just run with me anyway…..win win. I am so incredibly proud of everyone that ran with me and came to support me before, during and after. I am the luckiest person in the world to be surrounded by such amazing people.
I knew I was not going to come close to the long shot goal I had of completing the 13.1 miles under 2 hours so I was content with finishing in 2.5 hours or less. The temp was a perfect 50 something degrees but the wind was a little aggressive. Ok, very aggressive. I'm told it was blowing close to 30 MPH at the oceanfront at the time of our run. Luckily there was only about 2-3 miles of having to run into the wind, on the boardwalk, along the ocean with sand blasting our faces. It was great! HA! The seven others running with me created V formation and blocked some of the wind for a little. The support was incredible and I crossed the finish line beating my goal by 22 minutes. I finished in 2 hours and 8 minutes and felt great!!!! I kept waiting for the crash to come but I felt perfect all weekend and most of the following week. It was not until Thursday when the snow globe got shook up.
It didn't take much for me to notice that something was way off when 5 days after running 13 miles I could not get through 2. I felt swollen, fatigued, had nausea, and weight gain all the classic signs of sodium dropping, and it was. It had dropped - pretty bad too. 129! SNOW GLOBE! I had not been that low since starting Samsca in the hospital on February 9. Even when I weaned off the medication weeks ago I still only went to 132. This was not good news. Immediately following the lab results plans were in motion between myself, Rafe and Mayo. It was evident that a PET scan needed to be done and all thoughts were STAT. The sooner the better. But nothing, nothing, is ever as it seems with all this. Turns out that getting the PET scan prior to 28 days after the last injection of Sandostatin could counteract the Dotatate and create a false negative reading. See, the Injection and the dotatate bind to somatostatin receptors which they think (or “know”) the tumors produce sooooooo if the sandostatin is actively attacking the tumors then the dotatate won't have anything to light up. Or something like that. Anyway the scan was scheduled for home on April 1 but has since been rescheduled for next week at Mayo. We have talked to Dr Dimou and his approach is calming and reassuring. He reminds us that regardless of what we find on scans next week that we will learn something and with knowledge comes power. The power to proceed the best way we can. Currently I am on double the Samsca dose and my sodium is 136 and each day I seem to be improving. Next Labs will be at local oncology follow up this Friday before we head to Mayo on Tuesday.
Our return to Mayo will be intense and a very real, very heavy, life altering (again) visit. I have six scans scheduled and will follow up with Dr Olivier, Dr Dimou and Dr Natt. We may get bad news but we pray to get good news. I am still grateful that these little fuckers produce the ADH and alter my sodium in a way that alerts me QUICKLY that something is not right which has enabled us to get scans earlier. By the time we get this next PET It will be around eight weeks since my last PET which puts us at the same amount of time between my December scans and when the cancer returned in February. It's scary. I am scared. I know everyone is praying. I know this is all going to turn out the way it's supposed to for a reason we may never know. And yet it is still scary. I am trying to replace fear with prayer and do all the things to stay positive.
Ironically, It popped up on my phone today that March 31 was Chemo day 1 last year. Just last year. I remember vividly saying to everyone who was wishing 2020 away, to be careful what you wish for! 2020 was bad for a lot of reasons but there were some really great moments. From Chemo day 1 to today I have been fortunate enough to watch D get his license, make his confirmation, bring home a girl, play baseball this summer, take up a new sport and get As in classes I can barely even figure out if they are math or science. I have watched Rylie find a new desire to be involved in church, join the youth group, drop time in all her swim events, excel in school and adapt seamlessly to high school life even if it is virtually. I was cancer free for 7 months, was able to return to work for a couple months, started swimming again, ran in 4 races and PR my recent half marathon. We spent time with family over the summer, went to Florida for Thanksgiving and was able to resume a little bit of normalcy. I know 2021 is starting off pretty shitty but I hope it ends as well as 2020 and that we can all have a little normalcy again. I will try and get an update out as soon as we have info next share next week.
Some people have asked about the prayer I wrote for last weeks prayer group, I have included it below.
Prayer 3/27
I had been gathering my thoughts all week, and had finally finished what I wanted to say last night. Today we got some disappointing news, my sodium has significantly dropped. I thought about not reading this prayer but realized that its still important to say what has been in my heart, despite the current set back.
Dear heavenly father thank you for bringing us together again in prayer. As Matthew 18:20 states, and like Monika mentioned the first week “where two or three are gathered in my name there am I with you“
So many have continued joining us on Friday night for prayer and I know many others have been praying in private, tirelessly every day. We have prayed for my family and team of doctors, for strength and peace and have begged for healing. The Bible says “let us not grow weary for in due season we will reap do not give up“
As we gather tonight, the Friday before the holiest week, I ask for the Lord our God To grant my prayer warriors and supporters the strength to endure and grow in faith and not give up on praying. Let them not worry about anything and instead pray about everything.
Dear God thank you for the countless blessings we have. Thank you for the friendships we have made, the ones rekindled and the one strengthened as a result of this path you have put us on. I am grateful for the people who walk alongside me, supporting me, loving me, and encouraging me. Shower your blessings upon those I call friends.
Thank you for every single day. The good ones and the bad ones and help us remember that we cannot have rainbows without the rain.
Thank you for everything you allow to happen in our lives. Even when times are difficult we trust that you are at work and will carry us through.
Thank you for Family. I pray they know that I am the person I am today because of them. I know this must be difficult, lift their chins hi, hold their hands, and reassure them that you walk with me always. Help them to not be afraid.
Thank you for hearing the prayers being offered each day. Let those who are praying rejoice in knowing that they are working. My anxiety is improving, my fear is decreasing and my faith is deepening. Keep Filling their hearts and minds with positive thoughts of miraculous healing.
I ask for you to hear me now as I pray for all those that are in need of their own healing. Comfort THEM, wrap THEM in your love, and help THEM find answers to the questions they have. May your healing grace be with them each day.
Heavenly father, we have quoted the Bible and kung fu panda! We have prayed through song, poem and silence and we have laughed and cried together please continue to wipe our tears away and fill our hearts with hope. we ask this as we ask all things through Christ our Lord Amen.
