When the rubber meets the road

I remember when I was first diagnosed, I just HATED telling people. The look of sadness and fear would take over what was usually a happy face a moment before. I realized just how much I value being able to give people a cheerful interaction in life - I'm hooked on trying to make people happy. So...sharing sad things is hard. I have laid in bed for hours until finally getting up before dawn again, debating on this post. I am most honest here. I also fear I bend toward self-pity here. I am disappointed. I recorded how I was feeling before starting this targeted chemo regimen so I could remember how badly I felt and why I made this decision. Even reviewing that list of symptoms,   I'm questioning this decision. It's not just Belinostat, as the doctors presented it - it's also the anti-nausea (4) drugs, the protein pump inhibitor IV and oral meds, the steroids IV every day of treatment and Prednisone as needed, which I should probably be starting again but I am hes...

I hate when I can't sleep although I sometimes love how much reading and thinking and praying I get done. It's just that I usually lose the morning to a nap, although I am so grateful that I don't have to go to work right now as I've done for years after a night up. Treatments have had me feeling yucky (fluish, headache, general malaise) and I sometimes wake up with the feeling that I have food stuck in my esophagus at night. It can be pretty bad but the meds they gave me worry me, so I'm using natural remedies at home. When I actually take the chemo, I am taking an IV protein pump inhibitor that can bring on lupus and stomach fibroids, among other things, but is helping tremendously with pain I was having in my spleen/pancreas areas. I feel like taking it is making the treatments bearable, but it still worries me. My mind is consumed by the state of our world right now. I am a person who has benefited by taking the middle road all of my life. I am a middle chil...

Hi There, I pray you are having a good Tuesday. I had the 2nd day of this series of IVs today and I'm relieved to report that the 4th drug they've added for nausea and acid buildup in my body that was causing the pain in the spleen/pancreas area is much better. In fact, the pain is gone - I just feel yucky while getting the IVs and for the evening afterward. I did have the worst night sweats I've ever had last night, having to change my PJs twice in the middle of the night. It's the strangest feeling to wake up all wet - not under the arms or anything like sweating - it's just wet all over and cold. I ended up staying up from about 3:00am and reading, doing facebook, and I watched an intriguing sermon about how Bethal and Hillsong have some very disturbing practices in their churches and how we need to be careful about our influences. The pastor had some interesting things to say about how we can be supporting non-biblical things so passively - by buying their m...

Hi! It's been two weeks off of treatment. I started Prednisone again a few days ago because the swelling and joint/muscle pain had returned and especially because I was having trouble sleeping with throat swelling. It feels like my palate collapses when I lay down and relax so I can't really relax enough to sleep. I am so grateful for the system at University of Colorado Health where I am being treated. They have a portal system that houses my appointments, treatment history, drugs history...everything...and I can message my doctor. She got back to me within a couple hours, asked a couple questions, and put me back on Prednisone which helped pretty quickly. I met with her Thursday as I must do each time before starting the 5 days of treatment. She and I are watching to see what happens but it may be a thing that I take Prednisone as needed here and there. As with any drug, it has it's side effects that we must weigh against benefits. I've been feeling pretty goo...

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...