When the rubber meets the road

This is the second night that I am going to bed feeling really miserable with body aches, swelling and pain in my feet, ankles, hands, wrists and other joints. In the middle of the night, I got up and had to deal with a pretty bad bloody nose. I still feel pressure in my sinuses intermittently and sometimes have a stabbing headache. It's been hard to sleep. It feels strange to be so up and down; I had a pretty good day yesterday with a surprise outside visit with the grand babies and their awesome mom and dad. It was like a breath of fresh air. We had an outside by the fire pit dinner with Nolan and Lexie last night that was so fun. I thanked God that I didn't have any pain when they were all here. In the past, my diet didn't seem to really impact how I felt. I am suspecting that I should get back on the Plant Paradox or the AIP Elimination diet to really see if my body is reacting to foods but, ugh - I am having trouble getting motivated to start all that again. My...

It's day 11, Thursday, since starting Belinostat. In general, I have been doing well. I'm taking apple cider vinegar, honey, and cinnamon "tea" 2 - 3 times a day to combat the general feeling of acidity in my esophagus and stomach, and because the anti-acid IV helped me so much the last day of Belinostat. I hate how I feel on the drug the doctor prescribed so I stopped taking it after 2 days. The idea of adding vinegar to the body to combat acid is so contrary to the common thoughts on the subject - in fact, the doctor told me to chew on tums. Years ago our son, Cameron, had a terrible infection causing painful sores in his esophagus. It was his research that first taught us about the dangers of taking antacids. I can't tell you how many times our children have led us to knowledge and I'm so grateful for it. The very strange new symptom took hold the evening of day 9; my ankles feel like I have sprained them. It's a very ugly feeling of inflammation. T...

I find myself waking up really early this last three days, feeling like I have food stuck in my esophagus, uncomfortable, and wide awake. I laid in my bed this morning, wanting to make it a landmark day. Could this be the "new start" day I have been yearning for and yet not having the mental or physical energy to start? I'm an all-or-nothing person in so many ways. I like to go full-bore into something, finish it, and move on. This last 3 years have taught me so much about needing to take things one thing at a time and dealing with uncertainty and even, inability. My faith has been key; if I didn't believe that I was worthy to walk on this earth without proving my worth through taking care of everyone and everything, like I once thought I did, I would have died by now. I have felt the kind but firm and loving hand of God holding me pretty still as I've dealt with having to give up my overly scheduled self-esteem propping productivity and prove-that-I've-go...

Hi there, Gosh, I woke up feeling good yesterday (day 2 of treatment). I had slept all night and actually felt rested with energy; I can't remember when I felt like that. It was sunny but cold so, after some breakfast and catching up on email and facebook, I bundled up and got outside. I need to not be afraid to get outside when it's cold. The weather app said it was 15 degrees so I put it all on. Once I got walking, the layers started loosening. Some fun while outside in the beautiful sun with my rather unnecessary snowshoes! I listened to a podcast we love called BEMA Discipleship, helping me understand scripture from an eastern/hebrew point of view. The first day was so hard with the nausea and headache and general feeling of malaise after treatment that I took the Zophran they suggested in the morning. I have another med at home if that doesn't work. I've learned these anti-nausea meds all hit different receptors which is why they have so many you can ...

About a week ago, I sort of panicked and contacted the oncologist in charge of my local care. Everything was swollen, my lymph nodes felt bigger everywhere, my hands, ankles, wrists hurt and my nails have shooting pains under them. I went to bed one night in abdominal pain - more like horrible cramps (which I am way past experiencing). The left side of my jaw hurt to chew and I couldn’t open it normally; the one oncologist said it was probably a swollen lymph node causing it. The hardest was trying to eat or sleep with my adenoids and tonsils so swollen then were touching. She responded immediately by sending in a prescription for prednisone and we scheduled to start the Belinostat, the targeted chemo drug, for today -Monday, 4/13/20. I have felt amazing on the prednisone and had it in my head that Belinostat was no big deal. I know it's much less toxic than CHOEP. I was actually kind of excited to get started. I need some structure. I want to consistently feel better as it promi...

I couldn't believe I had to go the hospital in the middle of a pandemic for a 90 minute meeting with a pharmacist to prepare for chemo, when I was choosing not to do chemo. I decided to document what I learned - both for myself and because at least a few people who read this blog will be as curious about it as I was. First of all, I am so grateful to feel good about the hospital and clinic/infusion center housed inside the hospital. Every person I've interacted with is friendly and professional. I trust them as they have proven to really do their homework and can talk intelligently about this rare cancer when I'm there. It's a newer, nice looking facility and its only 15 minutes from our home. It just feels good. Granted - it's a bit hard to get to know people through masks, but I have been really impressed by every single person I've interacted with. I met with Dr. Kate Jeffers. She's an in-house pharmacist. The purpose of the meeting is to make the...