Starting the new cycle of chemotherapy drugs means starting over with new possible side effects and new possible limits.

On treatment day and the next day [Friday], I felt amazing. I could participate in meals and family activities fully, which was incredible! The fogginess that I experienced with the previous medications manifested itself in a far less way with this new one and it was mostly cleared by the time we got home Thursday afternoon. The next morning, I was thrilled to be able to go to Wyatt’s Parent and Me Field Day and not only was I able to go but I felt well enough to participate in the golf ball relay with him.

Saturday morning, I woke up with a minor amount of bone pain – thanks to the blood count increasing shot that I continue to get after each treatment – and an achy shoulder that I played off as having slept wrong. We headed out to the cold, damp and super windy soccer fields around noon where I coached a team full of five year olds. I felt decent through the game though I was beginning to notice a few more aches in my joints. Figuring I was just cold, I headed to the car to warm up between Wyatt’s game and Keenan’s game. Being in the car helped some but there was an annoying with a lower case a feeling in my shoulders, elbows, hips and knees that just wouldn’t go away. It wasn’t the pain in my bones, the kind you feel inside your bones, that I was used to. It was different. It was in my joints. It wasn’t enough of a feeling to do anything about or really even say anything to anyone so I just let it go. I watched Keenan’s game in relative comfort knowing that after it was over I was headed somewhere to get a hot tea while I waited for the older two boys game to start because no one wants to just hang out at a cold, wet, windy soccer field all day. I got back to the field just in time for the oldest two to start their game. About halftime, I started to notice that I needed to keep my knees moving to stay comfortable but it wasn’t anything that was too bad. By the end of the game, I hurt but just a little bit.

When we got home 20 minutes later, I couldn’t move. My joints were killing me. The only thing I knew to do was to curl up on the couch and pray for relief. Thankfully, Andy just took over all the parenting and adulting things and let me do what I felt I needed to do. When it came time for me to head upstairs to bed, I couldn’t confidently climb our stairs alone. Andy, every doting, walked up behind me offering any support I wanted but forcing nothing more than I asked for knowing that I needed to try to do it by myself. Sleep came easily and I was mostly able to sleep through the night – a blessing we didn’t expect considering how much I hurt while I was awake.

Sunday morning brought less pain than the night before but I still was only able to shuffle along slowly, very slowly because my knees didn’t really function. I went to church anyway. I needed something normal. The pain continued through the day and waves of it were quite uncomfortable but overall it was manageable until about 5PM when I once again was rendered immobile. I had been struggling all day with whether or not to call the on call doctor and finally at about 6, Andy convinced me that I should. That I shouldn’t be having to deal with all of this pain if there was something they could tell me to do or take to relieve it. Side note, you don’t take anything, not Tylenol, Advil, cold meds, etc without checking with a doctor when you’re on chemo because so many things interact with it or cancel out its effectiveness. The on call doctor told me I was likely experiencing nerve pain in my joints and that I could take 1000mg of Tylenol every 6 hours as along as I didn’t exceed 3000mg each day. He also said he’d have my doctor call me in the morning. Immediately, I took half of the dose he recommended – medications always seem to work more strongly for me than for others. Twenty minutes later I had no relief. Thirty minutes went by, no relief. Nearly an hour later just as I was about to take the other half dose, relief came. The pain reduced. I could walk.

Monday morning I felt great. I got up and was able to get the boys started with breakfast and school work. I cleaned up from what had been a busy weekend, did dishes and laundry, swept the hardwood and tile floors all the normal things. At one point, I noticed that the medication would have worn off and I only felt a little stiff, no pain. I continued to be pain free until early evening when all the sudden the pain returned and with intensity. This time armed with pain reliever, we headed it off much more quickly and I was able to participate in our evening.

Today has started much like yesterday. Will the pain stay away? Who knows. We’re praying it will. But as we learn these new side effects, we are learning new limits and new patterns. It is different. It is humbling. It is overwhelming. We’re doing okay and don’t really need anything new or more as of yet, but we’re well aware how quickly that may change.

*** For those of you who may wonder if this is my body saying it can’t do the larger doses of this medication all at once, from what we have read, it wouldn’t matter if I had the larger doses or the smaller doses my body would have likely still responded this way. We have also read that just because I reacted this way this time does not mean that I will do so again after the next dose. My doctors and I are talking through all of my reactions to things so we can make the best choices possible for my treatment plan. There are a lot of things to weigh as we decide how to move forward and we are considering them all as best we can.