Today started really extra early after a really extra long night.
All basic things were really hard. Driving was really hard. I dropped Kelsianne off for a playdate because we knew today would be rough. I could not remember how to get to our friend's house, even though I have been there tons of times. I got lost before I was able to find the right street and drop her off. I had to be extra aware on the drive down to my appts, with ceana calling to offer to drive because she was so worried about me being safe.
I did finally make it down to appts. Lab tech is really great. We just chat while she is doing my blood draw for my labs. She is very young, but very wise in her experience and in her suggestions for helping me think of things to help me be better.
There is a cafe in the new cancer center, which I was grateful for today. I was able to get a light breakfast before all of my big appts. It helped a ton.
1st appt was in the infusion office. New nurse and nurse from before. Injections went smoothly and so far no increased joint pain. 2nd appt was seeing dr and PA. That was a really long appt. Lots of chatting and tweaking my appt scheduling. Bummer news today that is after just one round of chemo plus week "off" my total white count is down by half (# has to be over 1000, in window of 1200-1500 - mine was just barely over 500. I wont be starting chemo tomorrow, and with strongly suggested instructions, I also will be laying low and not going out and about or be in large crowds (including church) for the next week minimum. I have more labs scheduled for the end of next week, and labs and another appt the week after that. They are hoping that if I can "rest" that my #'s will come back up. Will be extra concerned with next round of chemo and possibly having labs done every week vs every 2-4 weeks. For now, I am to follow their instructions and rest and look to the labs next week to make a go forward plan.
I have to write about the whole oncology team. Lab tech is so thoughtful, quiet and kind. MA's are not afraid to share their advice, concerns and encouragement. Lesley kindly reminded me to let others help me, esp the kids if they offer. To remember this is hard for them too, and if they think of a way to help, to try to let them help.Today when #'s were so low, and knowing that meant the plan would change, Katie brought out a packet of "do/don't" items and sat and talked with me for nearly 30 min. She expressed concerns, gave instructions and the "why" to go with them. This list, for now, includes no fresh fruits/veggies/flowers. She was tender and kind and patient. She gave encouraging words and also reminded me about letting others help me. 2 nurses in 1 day, I better listen ;) I left the office feeling like i would cry for good reasons vs because over tired and overwhelmed. I know that they truly mean it when they say to call for any reason. I love their hugs that really strengthen and sustain me. They are truly a blessing and a shining light of love in the midst of all the dark, hard days.
My last appt for today was to meet with the nutritionist. It was a good and not good appt. Anthony was able to go over my journal entries with me and we chatted about what is working or not. We discussed and set some new goals - no sugar added foods, need to take out/reduce any carb based foods and replace with proteins and veggies. 1 C of milk/day - preference to have no milk/day.Whole/Natural PB if can tolerate it. Look for high fiber tortillas, or have measured amount of corn tortillas or chips. Eat 1C beans of some kind every day. Even on feeling crummy days eat 1/2C something healthy often, every few hours. Good input today - olives good, mayo ok sparingly, eggs of some kind are ok for every day. Bad part of today appt found out that Anthony is leaving his practice, leaving the state for family medical reasons. That was a big RATS because he has been a great add to the oncology team. There is another gal at the new cancer center who I am hoping to get in to see when I am there for appts. Will see how that goes.
I ended up with about 5 hours of appts today plus driving. So very thankful for Ceana taking her lunch break to run to the store and that she was able to pick up kels from our friend since I was running way behind from longer appts. I am also thankful for Kaeli who came home from work to put dinner together and care for Kels so that I could finally get some sleep. After a long nap, I am tired, but feeling a bit better.
There was one extra appt today. A home visit from our EQ Pres and our Stake Pres. I have to openly admit that I was terrified to have him come to our home, knowing they were both there to specifically check on me. And at the same time, so very touched that they both felt impressed to come and visit me right now. We had a nice visit. They didnt mind that I was feeling yucky, and they listened thoughtfully as I described today's events and my lab outcomes. They asked some ???? that I tried my best to answer. Not sure if I told them everything they were expecting to hear or that I expressed myself clearly enough. Even though I was so scared to have them here, I am truly grateful that they were both inspired to come to me, to express their love and concern for me and our family. Pres P handshakes are strong and filled with feeling, but his hugs are even better. I was so blessed tonight to have Bro N and Pres P here in my home, blessed that they prayed for me and our family, that they were here personally, just for me. It was a precious gift.
Will be sure to post again tomorrow with results from my dr appt and the labs that she ordered. I know there will be some concerns to be addressed, hopefully not too much. Stay tuned.
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