It's been a while and a lot of life has happened!

 I had to go back and skim my last post to remember what it was about. And well...a whole lot of life has happened since June7...almost 2 whole weeks. 

I work really hard to not look how I feel. Sunday, June 8, I think I failed. I parked off site and almost couldn't walk up the steps to get on the shuttle bus. I almost texted to see if it was ok for me to park on site, but I refuse to let cancer and treatment win. Some think it is pride, I think it is determination. I was having so many problems walking and I had ZERO energy.  I was able to turn it up some before I had to greet children. In my head...after other wonderful caring leaders passed me, I was smiling and somewhat energetic. I do not know the reality of what I looked like. Wait! Maybe I do! My boss saw my daughter standing near me and thought our colors complemented each other, so he took a picture. Let me go find it...

I guess if you don't know me, then you might not be able to see how I feel. What I see if a puffy face and lots of wrinkles. My eyes are tired. What you don't see in the photo is me leaning on the table, because not leaning on the table is hard. Everyone who knows about all that is going on kept telling me to sit down in the stool that was right there, but I need to greet children and families standing up. In my mind sitting down makes it seem like I am just there saying "hi" as an after thought. Aside from my own personal critique of my appearance, I don't think that I look too bad and I surely don't look how I felt that day. 

I did feel a little better as each day passed, but not much. The neuropathy in my feet persisted and at times was painful. I still have it. The fatigue never really let up. I am thankful for the extra week between chemo sessions, but I sure didn't bounce back much this time. 

Let me just say...I didn't have time to feel bad! Vacation Bible School was coming and I had way too much to do! My counselor said to be upfront with  my coworkers to let them know that there will be things that I won't physically be able to do and that I would have quite a bit of limitations over previous years. Yeah...I didn't do that. I was also told that I needed to be realistic with myself. I didn't do that either. I am not exactly the easiest person to counsel. I am stubborn and determined and refuse to be limited. 

So, we had another Sunday. It was the Sunday before Vacation Bible School. It was that day that I was not confident I would make it through the week. Heck, I didn't even think I could make it through Monday. I was barely able to walk by the end of Sunday night. Everything in my body...bones, muscles, and all of the things, hurt so much. I woke up Monday still is so much pain, but pushed through. 

What do you say when people ask how you are doing, or how you are feeling, or how you are holding up. Everything in me wanted to say that I am not ok, I feel horrible, and I am not holding up. However, that is not what came out of my mouth. I would smile and say ok, give a thumbs up, or say that I am still standing. Even when I try to conserve my energy, I never know how much I actually have banked and that bank could run out whether I use it or not. 

I was working on numb feet, random times of dizziness, and insane fatigue. I went home each night in incredible pain and completely spent. I joked with someone that my expectations were way up here (picture my hand high). My reality was here (picture my hand mid thigh), but this reality was my own perceived reality. My true reality was even lower ( picture my hand below my knees). I think it was Wednesday night, when I finally admitted that I needed a chair. I also admitted that I could help clean up, but could not do anything that required stairs. I was a little upset when I was sent home before clean up, but also thankful. I needed to go home, but was not about to admit it. 

   

   What does the end of VBS week look like? Ok, maybe not...this was somewhat of a staged photo. I knew it was being taken. Thursday was crazy pajama day. I had on slippers, foam rollers in my hair, and a sleep mask. I started the day with a mask that said, "Sleeping Beauty." At dismissal I changed it to "Do not Disturb." At the end of the day after clean up and getting Sunday ready...I feel bad about not doing the physical things, but I did get all of my numbers and data taken care of. This mask, actually there were two, one said "Leave me alone" and the other one that you can see says, "Good Night."

Realistically, I think this was the most physically hard and mentally hard week that I have had. I want to say ever, but I am sure there have been hard times that my brain has forgotten. There were mental challenges. As someone who is always a go-go-go person, I had a problem coming to terms with not being 100%...heck, I don't even think I was at 50% or my normal. I feel like I was fighting with myself to make things happen. I also take it a little too personally when little things go wrong. There were no big issues that were caused by me and my work (that I know of), but I am a perfectionist and tend to take those few little things and over analyze them to make sure it doesn't happen again. Is that really so wrong? Then again, I have to remember that my brain is also not functioning at 100%. The brain fog is real and I have problems recalling things and even words sometimes. There were physical challenges and a lot of them. The neuropathy most definitely did not resolve. The numbness and tingling is still there. It makes it hard to walk and to stand at times. New thing this week...extreme pain in the top of my feet...both of them. I woke up  in a lot of pain Monday night. I looked at my feet and expected them to be hugely swollen, because it felt like that might be the reason, but they were not swollen at all. The other weird thing that has happened with my feet is strange pulses. It happens in both feet at the same time. It feels like a quick pulse kind of like a jolt. I kept thinking that it was a big enough pulse to be able to see it, but it doesn't happen when I am looking at my feet. It happens when I am driving, sitting at my desk and standing...never when I am looking at my feet. It for sure is a very odd and unnatural sensation. Enough of that...cancer sucks...chemo sucks...life goes on! Unfortunately, there were quite a few moments this past week where I had to pause and hold up a wall, or lean against a table to breathe or keep myself from falling over. Most of the time, I could do this unnoticed, but a few people saw my weakness...I do not like that!!!

Here I am the day after the end of VBS. There is really no rest for the weary. I had appointments today for blood work and oncology follow up. My dog was not thrilled with me. After a week of leaving shortly after 6 each morning and arriving back at home late, he must have been hoping for a lazy hang out with mom day. Well, when I sat on the edge of my bed to put on my shoes, he was having none of it. He backed up and put his booty in my lap. When that didn't work, he decided to plop his 84 pound body on me. Then kept plopping to reposition himself so I couldn't get to my feet. When that didn't work he trying digging into the bed to keep me there. This last attempt left me with a few scratches on my leg. My poor buddy must have really missed me. Prior to VBS I had been trying to get him a daily walk or run. Then I will play with him more in the house. I think he may have been depressed. He wouldn't even look at  his last Bark Box. He usually takes it from me and tears into it. He was finally coming around some and more back to his normal self. 

On to the appointments...No surprise...I needed the shot to boost my white blood cells. So, in addition to my tingling feet and the horrible pain in them, along with the body aches from this week, I now get to feel like I have the flu for the next few days with more body aches and pains and even bone pain. YAY me! I am praying it all works and I can proceed with round 9 on Monday. I also meet with the NP who ended up having to consult with my oncologist. We dropped the amount of oxaliplatin for the last round. It will be getting dropped again. I do not know how much, but it was dropped to 75% last time. This is why all of these symptoms took me by surprise. It feels like the pain and neuropathy increased by 1000% this last round. Even my face, arms and hands had issues, but they were not as detrimental as the legs and feet. The NP even said I shouldn't try to run while having the more severe symptoms. UGH She then asked what else I can do to clear my head. UGH I just want to run. I want it to feel good. I want the runners high again. I want to get my activity level back. 

Still no rest for the weary...I had to catch up on things today. I have to have Hannah at church by 8am for her Rush Week trip. Sunday is another long day. Then chemo....

Prayer requests for this upcoming round: 

• For my WBC numbers to be good enough to proceed with chemo
• For minimal side effects this time
• For the neuropathy to resolve
• For more energy...my helper, cook, walker...will be gone for a week. Hannah is a lot of help when I just can't function. 
• For the chemo to do its job!

Things I am thankful for: 

• I was able to make it through VBS. The best part is seeing the children leave happy and excited. I am more of a behind the scenes person. Most people don't know what I do or that I am even there. There are no fun photos of me singing, dancing, or teaching. My view of VBS can't be shared. I absolutely love the job I get to do. My prayer is that every child felt seen and loved. There was a. child that I initially struggled to place in a class. I saw him one day on the way out and he was so excited. He told me what he had learned. I had a brief moment of ministry with him and his mom. 
• I am thankful for the drop in Oxaliplatin.
• I am thankful that I am another week...day closer to what I hope is the end of this journey.
• I am thankful for medication that will help me sleep. My body is exhausted. My brain is exhausted, yet my brain is constantly firing. It is like I am exhausted and amped up at the same time. 
• I am thankful for people who care about me and how I am doing.