"Chemonesia - loss of memory as a result of...what was the question again???"
Chemo is kicking my butt this time around. I'm usually an early riser, but I stay in bed until a few minutes before I have to start working. I'm fortunate to work remotely for the American Cancer Society. This week I am home for 3 days and then I'm off to Nashville for the ACS Relay For Life National Leadership Summit. This is one of my favorite events of the year and I have every intention of getting on a plane to enjoy the experience with people across the world. There are only a few things that are making me wonder if I will make the trip...I was told not to fly during chemo, I'm not sure that I can handle the walking at the hotel, my body hurts everywhere, it is an emotional event, and my stamina has hit rock bottom. It is Monday, so I have a few days to decide on what I will do.
Monday is full of conference calls and catching up on work. Dad made is daily visit and stayed for a bit while I was on a call. I always have the phone on speaker and usually keep it on mute unless I am speaking...Frank LOVES "speaking" on conference calls, so I have to try to keep him from being vocal. When the call was complete, my Dad simply said, "You're on the phone a lot...they do a lot of talking." It was just a funny statement because he is correct. We spend a lot of time on calls to get stuff done. I can usually remember conversation on calls, but I had to write a lot of notes today. One of my biggest frustrations this past couple of weeks is that I am having a tough time thinking of words or completing strategic thoughts. This is not a part of my norm. I am frustrated with the fact that I cannot come up with simple words. I am sure that it is a part of the stress, but it reminds me that chemo brain may eventually set in. I have a mental cloudiness that I cannot explain. I feel like I am spending much of my time in a fog and when I do leave the house it appears that the world is moving around me and I'm not really a part of it. I'm not taking pain killers because I need to work and be product. Fortunately, I had some projects that I could dive into and keep busy. My lunch was spent taking a quick nap. I set my alarm for 35 minutes so that I could rest. I call my nurse after lunch to try to see what we can do to manage the pain. She then had Dr. Robinson call me. She thinks that I am in pain from the Neulasta and a combination of the Taxitere. Apparently, the Neulasta has a tough impact on young, healthy bone marrow. Did she just say "healthy"? I have cancer, but my bone marrow is healthy. We talked about some options for my next round of chemo. Stronger pain killers, skipping Neulasta, trying a different drug, etc. I guess we will figure it all out as we go along. Bed came around 6 PM. I'm not sleeping well, but my body is in pain and exhausted.
Tuesday is pretty close to a replay of Monday...pain, work, nap, work, bed early. When is the joint and bone pain going to stop. It has almost been a week since chemo. Why isn't it getting better?
Wednesday started with pain and work, but the pain was getting a little better. Not great, but better. If I had to leave for Nashville this morning I would not have gotten on the plane. I ran to pick up my wig after work. The pain, lack of sleep, and situation have me in a bad place today. I wanted to make sure that I have my wig for the trip to Nashville...just in case. The hair takes up to 14 days to start falling out, but I want to be prepared. I arrive at the wig shop and I am emotional walking in. I'm simply picking up Zara, I'm not trying her on or getting her trimmed. I'm just getting her as a safety net. I give my "cranial prosthesis" prescription to the lady at the counter and the I start filling out paperwork. They then want me to write my credit card information on one of the pages so they can bill me if my insurance does not cover the cost of the wig. This just didn't settle well with me. I'm not comfortable leaving my credit card number, expiration date, etc. on a piece of paper that will be put somewhere in their store. So, I asked if there were other options. The lady did not like my question and tried to convince me that "everyone" does it. I wasn't sold. So, she went to the back to get something and then I had three ladies in front of me telling me that I could not get my wig without writing the number down. My emotions were starting to bubble over and by "bubble over" I mean I am going to start sobbing any minute. I simply say "fine. take the number." and the owner just keeps talking and telling me stuff. I say "I get it. Just stop. You have the number." She keeps going...I'm ready to lose it. GO AWAY from me. You have what you need. Give me my wig so I can get the hell out of here and keep what is left of my dignity. No sooner do they leave the room that I start sobbing and I couldn't stop. Tissues in hand I paid for what I needed, apologizes profusely, and headed home. I cried most of the way because I acted poorly and because I picked up my wig...only a few more days with my hair...only a few more days until I can't hide that I am sick. When I got home I decided to walk to St. Joe's Park to see Stephanie's youngest play in the World Series Baseball Tournament. The ballpark is less than a mile away. I thought that the walk would help me stretch my joints and reduce the pain. I haven't workout since shortly after I was diagnosed, so I wanted a little exercise. It has been hot in IL, so I was dripping in sweat and exhausted by time I arrived at the baseball field. Pizza for dinner, a couple of bottles of water, and I watch the game. Well, I watched two innings. They were the longest two innings ever! The boys were playing well and the score was high. Stephanie and her mom were insisting on driving me home, but I insisted on walking. I was still in my fog while I was at the game, so it was difficult to pay attention. I needed it for me. Before I left Julie gave me a bag of goodies and Stephanie said she would drop them off at my house so I didn't have to carry it when I was walking. It was strange being there. Word had gotten out about my recurrence of breast cancer and I could tell that a few people were giving me the "look". I said my goodbyes and headed home. A storm was coming in and I wanted to make it quickly. I walked and text my friend Jeff most of the way. Finally, I made it. Then the storm came in. Stephanie and the boys dropped off my bag. The gifts and card were very thoughtful. My favorite part was the hat that Julie's mom knitted for me. Once I lose my hair I will need a cap to sleep in and I had asked if she would consider making a baby soft cap...it is perfect. Then the packing began.
I'm not 100% about going to Nashville. I know it is where I belong this weekend, but I'm not sure that my body or mind can take it. I figure I will pack and then make the call when I see how I feel in the morning. I then decided to post my battle with cancer on Facebook. It is so strange to have social media play a roll in my battle with cancer, but it is. I have turned my page on and off, but I decided that I would make my statement and share the blog. This would allow me to be in control of the situation. People were already talking, gossip was spreading around town, my friends were fielding a lot of questions...I needed to won it and make sure that everyone knows that I have a great support network, I have a solid plan in place, and I am going to be ok...well, I'm not 100% on the last part, but I am getting there.
Time for bed. It has been a long day and I have to get up early to decide if I am going to head to the airport. Sleep well.
XOXO,
S
Cancer & Cupcakes...well, maybe a little more cancer than cupcakes these days. My journey with cancer continues...
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