I wake up with a tired and grateful heart.
A very tired and exhausted heart.
A heart that really wants to go home, was told I would probably be going home, then later night told may not go home for a few more days.
So I’m praying really hard that labs are good, rash is acceptable, and whoever is on rounds today says that I can get one more good IV push this morning of steroids and then can go home to begin an oral taper.
Yesterday was a mixed bag of news.
I started the day with another round of several oncology residents and interns and the head coming to see me. There was a hot discussion about how supplements could have caused this reaction, and I kept saying nooooooo, because number one, I havent been taking them for a few weeks because of the issues of swallowing, and number two, Donnie is brilliant and they all know what I’m doing. The doctor was adamant he wanted the list of supplements which meant more emails back and forth. As he walked out I hear him telling the young doctors how you can’t trust patients at times to be honest about what they are taking.
Which means that a whole new generation of doctors need to be re-educated when they finish medical school.
Which meant that when two of the young doctors came back to me last night I made sure to re-educate them.
I know that some of my best teachers have been my students. The same can be true in the medical field. Some of the doctors best teachers can be their patients if they have an open mind.
Unfortunately, after educating them, they said their doctor said I may not be allowed to leave until Sunday or Monday.
My doctor had come by at lunch at saw no reason to hold me past today. I looked better, I’ll rest better and eat better at home, and I’ve already weaned myself off pain meds. My lymphocytes took a big hit yesterday, which is not good as a cancer patient. I need those to fight cancer, and steroids are releasing them from where they are needed and into the bloodstream. So steroids are great short term but not great long term, and I’m a big picture long term kind of girl lately. We even agreed to do a 20 mg dose of chemo in two weeks with Benadryl push and no steroids, to see if we can try this dance again and not affect my micro biome.
The dermatologist came soon after my oncologist and was excited. Why? Because there is some super scary skin issue which can be a life threatening disease, called Stephen Johnson syndrome, which apparently they all thought was a possibility. Hence the biopsy. It was a core biopsy, which meant it went several layers down into my thigh. The good news is the rash was only on the top layer and on the upper part of the second layer. Which ruled out the SJS and pretty much verified it was a doxil reaction to too much chemo at one time.
The nice thing was the doctor told me how impressed he was by my ability to go toe to toe with doctors and speak the language. He said he recognized immediately I knew my stuff. We now have a mutual admiration society. He also spoke to us about Morgan and her alopecia which seems to be stress related. We will be watching her closely after this episode, as her hair has started to grow back and we pray it doesn’t fall out after this stress of the last month. It’s nice to have another doctor in our toolbox.
I was definitely on a high after my doctor and the dermatologist. I took some laps around the hospital wing.
My brother Scott came in the morning with my mom and we had some laughs. I now have more hair than him again and we compared.
My mom stayed all day, rob was by for a few hours mid day to make sure he was able to meet with doctors, my dad was driving really the kids around, scott and dad met Quinn off the bus, rob got Quinn to tennis and to his camp out this weekend, and my dad brought the girls to the hospital to see me and grab mom. It was good to see the girls and we had some good mom talk. I’m always amazed how petty some girls who can seem like friends can be. I’m glad I was able to be here to talk through a life lesson.
They all left and I was alone, and a little thrown off that the two doctors had just burst my bubble that I may not go home today.
That’s when my neighbors stopped by.
I had their son in first grade twenty two years ago. We moved onto their block years later, and the wife runs a bible study group on Facebook that I start my day with.
I knew God sent them to me at the right moment. We stood and held hands and prayed, she read psalm 91 and sang to me, and we hugged. It was what I needed at that moment.
God always provides.
Rob then came and stayed until 11:30.
I dont know what today will bring me.
I’m praying it brings me home.
I’m grateful I have access to good care, kind nurses, and a family that has been here for me and rob. We could not have been able to do this without their love and support. Rob and my family and kids have a texting thread and we all have been in constant contact. My kids have been so supported by all of them. So I’m thankful for cell phones too.
It was my niece brennan’s birthday yesterday and even though they are all states away now, they all texted and have been showing how much they love us.
I’ve had so much support through my blog and Facebook and instagram as well. I had a new friend stop by yesterday and my mom and scott saw a glimpse of why I share so much. We fill our own cups when we help others fill their own.
I’m praying for my roommate today. She had a very long day of tests and is scared, and prays out loud all night and day. I’ve been talking to her through the curtain as she is alone all day. 83 years old. God bless Joyce.
I’m praying for my friend Karen. Hip replacement is no joke. We were texting again at 1:00 am. I’m praying for sleep, pain relief, and the first of many strong steps towards a pain free and beautiful, peaceful life.
I’m praying for rob and my kids and my parents and siblings. I may look good in pictures, but in real life this has been scary. This has not been easy. This has been a little too real about what a terminal illness is. This has been hard physically and mentally and emotionally on us all. We have our tribe and are grateful for everyone.
I’m praying that whoever is on rounds agrees with my oncologist and the dermatologist and agrees to let me go home to continue to heal.
And I’m praying for healing.
Complete and total healing to last for years and years and decades.
In Jesus’s name, amen.