End of Cycle 2!

I have had many thoughts running through my mind that I want to write about but, for some reason, I have been avoiding it. I do want to share about my last trip to MD Andy, when my precious son, Nate, joined me and an update about this coming week!

First coming this week! I am about to complete my 2nd cycle/month on the trial drug and make my 10th trip to Houston since April 18th! That means I will get to have a brain MRI and an PET Scan! There is a real thing called scanxiety. This for me is wrapped in nervousness AND hope. There is a weird tension between what could be and what I hope to be. Obviously, the hope is for proof that the drug is working! Possibilities include the tumors are gone, to anywhere in between, to there is growth or progression. Clearly, the hope and prayer is for disappearance and or shrinkage of tumors and for sure I do not want any new ones! If the tumors have disappeared, shrunk, stayed the same, or only increased by 20% then I stay on the trial. If there were to be more than 20% growth of the previously seen tumors or new tumors then I would move to different treatment option.

So, Monday, Jenni, Lydia, and I will drive to Houston. Tuesday, I will have imaging done. Wednesday, I will do lab work, Dr./clinic visit, and then have 2 treatment room visits. Thursday, I will have follow up appointment with the brain doctor. In the midst of all of that I hope to see some framily, eat some good food, and do some celebrating of my favorite firstborn’s 25th birthday! 🥳Side note: I really cannot believe it has been 25 years, since I became a mom. I have truly loved every season of parenting (excluding potty training), but this season of being mom of an adult is extra fun and special, but maybe, I have thought that with each season! Although, I have yet to get to the “easy” season of parenting. 🤷🏽‍♀️

Now A Long Story!

Okay, so almost 2 weeks ago I had lab work and a “fast track” clinic visit. Nate and I flew to Houston Tuesday evening to be there for early morning check-in Wednesday. Early morning as in 8am be at MD Andy.

Back up to earlier in that week and I just did not want to go. This was the 2nd time I had a full week of not going, but the first week I had not going AND not working! I really liked it. So, I was not thrilled about going, especially, because it was an appointment mainly for blood work and so the clinic can say they saw me. Because I am doing the trial this has created some appointments that are because I am on the trial and there are requirments for the study. I am not ungrateful and so, so happy, blessed, grateful, humbled to get to be on the trial and grateful to even have the opportunity to be on the trial…really! At the same time it has been a lot. You know how you do something really hard and then when you are finished you are like, wow, how did I do that?!?! Well, that is how the last 12 weeks have been, and it has gotten so much easier, but wow, how did/do I do that?!? (I know how, Holy Spirit, Father God in me)

So, I was not having the best attitude about going, but knew it would be quick trip AND Nate was going AND we were going to see some Houston framily! Then, when it was time to head to airport I got sick. Thankfully, my sweet Aunt Pam and sister quickly changed our flight. I rested. Felt better then left on later flight. However, that meant, we saw Wood girls late and had less time with them. But we still saw them, laughed with them, hugged them, and had ice cream!

Okay, so now, we are back to that early check in time. Nate was a trooper and was a big encouragement to me! Labs were quick and easy, so we headed up to “fast track” clinic. Fast track my @lm#n$op!!! Now, I had received a call the day before, when I was in bed trying to feel better to get on the plane, and warned that MD Andy had had some kind of computer mishap and to expect delays with lab results. Okay, no problem, I have an early morning “fast track” appointment and understand there may be a delay. Now what do you think of as a delay?!?

The clinic opens at 8:00 am. After visiting the lab I check in at clinic at 830, my appointment was 8:20, but no problem I was late, they knew I was in the lab. There is maybe one other person in waiting room. This office has 30 providers that see patients it is generally a very full office and waiting area. I greet my friends at the counter, they are happy to see me and my son. I ask if he has time to run and get breakfast before I am called back, oh, sure, he has time, if I am called back before he gets back they will tell him where to find me. Super, great!!! They explain there might be a delay because of what happened Monday, but it is good I am there so early, it will be fine. Probably, not more than 2 or 3 hours. 🫨 This is still okay, right?! This is what I am here for. I got my kindle. Our phones are charged up. Nate has food.

Nate gets back, he eats. He attempts to share his biscuit, but you know they like me to not eat before my clinic appointment, so it is fine, everything is fine. An hour goes by, I keep getting, notifications on my MyChart app with some of my lab results. Okay, this is good. Two hours go by. My front desk friend checks on us sometime during this, apologizing, asking if we need anything. Waiting room fills up, empties out, some have been there almost as long as us. Three and a half hours I go up again and just check, new friend at front desk, oh, yea, no they are still waiting on one more lab report, she explains it has taken some up to 3 hours, yes, I have been waiting 3.5 hours, yea, I am sorry, it may be 4 to 5 hours. Uh, what, excuse me?! They feel bad, they know we have been there, they check with nurses, I hear them explaining the same things to others, our Houston friend is circling the area waiting to take us to lunch. I did not even want to come, except I was getting to see friends. Nate is a hero. He does not get annoyed, stays calm, sneaks to the back to get us some good ice, takes a walk, makes me take a walk, plays on his phone. I put phone on airplane mode to play my game ad free. Turn phone back on to text friend, yea, still waiting.

SIX HOURS LATER!!! Six hours later I am called back. I cheer when they call my name, like I am on the Price Is Right. I offer hope to those in the waiting room, they too might get called back today. As I go back I ask if they want to take my vitals again, it had almost been a day since they took my blood pressure and weighed me, I am sure I had lost weight by then. They did not. I quickly 🙄 was seen by one of the providers I like more than the others. You will not believe what she said?!? Well, I do not have the lab results back yet, but I thought I would just go ahead and see you, examine you, and call you with results and let you know if you should dose today. You know, none of that was bad, but you know, why not examine me 6 hours ago, or 5 or 4 or 3 hours earlier and say all of that?!? So, 6 hours in waiting room for an 8 minute exam/conversation followed by a phone call 10 minutes later saying, labs were good, go ahead and take today’s dose and you can eat. 😲

Our sweet friend, Amanda, quickly picked us up and took us to airport just in time for our “late” flight. At least we got to catch up with her on the car ride. We grabbed something to eat at airport. Big thanks to the Wood girls and Amanda for accommodating our unexpectedness. Our brief time with sweet friends made the trip worth it!

The best news>>> the side effects are minimal and treatable and easily tolerable. The shoulder pain has GREATLY decreased! Maybe it is new meds, maybe the tumors are smaller and not pushing on the nerves, maybe both?!? The biggest daily side effect is fatigue. Sometimes, I let it take over and do not do much, but mostly I really try to keep doing all the things I want, even if I do not feel like I have the energy. I am enjoying summer, being creative, reading, and spending time with family and friends.

So my wisdom gained? Keep doing the hard things. Everybody has hard stuff. No one is special in that department. Do your hard stuff and help other people through their hard stuff as you can. Let’s not be victims. Do what you can when you can. Own what is yours and do and give all you can when you can. I know what really helped during that 6 hours of waiting was how kind and apologetic and sympathetic my friends at the front desk were. “I am sorry”, really helps, does not fix it, but when sincere sure is soothing. I can only imagine how difficult their jobs were made by the glitch. All the people, they had to explain over and over to. I am glad when I return this week, they will not hide when they see me coming, because I was not rude to them when they were doing the best they could, hopefully they will be excited to see the wannabe Price Is Right contestant. 😂

Firstly, secondly, finally, and lastly, Father God is still good even when. I still trust Him. He is my strength, my confidence, my Hope, my Joy, my Peace. My faith continues to grow and is strengthened! He is good even when healing comes with weekly trips to Houston, even when fatigued, even when I am feeling all the nerves in my shoulder, even when there are 6 hour waits for 8 minute visits, even when people are stupid and hurtful and dumb, even when I do not understand Father God is good.