Ned Henry January 22, 2021 · nedhenry.medium.com

Midnight — When you watch opera, you must remember to close your eyes occasionally and just listen to the orchestra.

Full day today. I have to be at the cancer at 7 AM and will be there most of the day. Not sure how much I will write when I get home. Maybe nothing more. I need to sleep. I’m tired.

ACIM — Lesson 21 — I am determined to see things differently.

8:45 PM. Been a long day. Just got up from a couple hour nap. Was tired — still am. But decided to take my mind off the nausea by doing some writing. I didn’t have much nausea after the first round of chemo. So I took some more nausea drugs and am waiting for them to kick in so I don’t throw up all my evening meds. Don’t feel like eating. Had to go slow again with Rituximat. Also had to stop again since I started to react to it. My body does not like that drug coming in there trying to disrupt what it thinks is normal cancer growth. It took from 10 or so to nearly 3 to get that one drug in me. And I had 4 more to go. Well, 3 more since the Prednisone is oral. Got done after 5 PM. The day started at 7 AM down there with labs. Then I met with the doctors. Well Dr. Allen right hand nurse practitioner, Priya and Dr. Tarabadkar, the lympnoma dermatologist. Got some questions answered. My labs look good. They gave me a copy and I’ll go over it some time with Sue. The sore on leg is healing and looks good. They do not want me to get my teeth cleaned yet but the good news is that the cancer has receded enough in my mouth that I can now brush my upper teeth on the outside side. If that makes sense. They gave me gabapentin for the cold feet circulation problem. We’ll see. I’ve taken that drug after my first knee replacement and well it’s OK. My feet are a little cold now. They told me I had to see the Palliative care people to get drugs for sleeping and they didn’t show up in the fusion room today as I had expected. So hopefully I can get someone from there on Monday. We’ll see how sleep goes this weekend. I have my ambien, and the anti anxiety “sleeping” drug they aleady gave me and benedryl and melatonin. By far my worst side effect has been sleeplessness. My watch told me I slept 2 and half hours last night. It keeps track. And they did confirm that there would be no consideration of moving me to Car-T chemotherapy after round 2 if the labs were more negative with R-Chop. Emory is not participating in that drug trial so it is not an option since the FDA has not quite yet approved it as an alternative course of action. So even though it was reported as very promising at the end of 2020, it’s off the table at this point. But R-Chop does appear to be working. That’s the good news. Probably won’t get much attention from Dr. Allen ( the head honcho oncologist) going forward anymore if I keep improving. I do notice that ALL the doctors and Nurse practitioners and nurses and people in the lab and everyone that does any hands on care is FEMALE. I have no men doctors in this fight for my life. Some of the people that did some of the tests in the first few weeks were men but other than that, men have been absent from the actual care giving. So I got Sara again in the infusion room for the long day there. I had her the first time and she wanted me again when she saw I was on the daily list. Such a sweet competent nurse. She lives in Candler Park. She watched over me and a few others with such gentle supervision. I asked her if she had kids since she is such a nurturing person. She said no. She said if she did have kids they would take all her energy and she wouldn’t focus her nurturing on her patients. Like there was a limit on her capacity. I don’t believe that but I didn’t tell her that. She called a few doctors over when I started to react again to the rituximat. She wanted me to tell me early if I started to itch so I did. I did not do that in Round one. I was just you know the strong silent type who would just weather the storm and not complain about a little itch — until it was everywhere and I was scratching like crazy. So this time we nipped it in the bud. Got more Benadryl and steroids in me and started back with the rituximat in 20 minutes. I listened to the Ride of the Valkyries as I invited and implored the rituximat to come into my body and do its job. I saw it coming to fight that cancer like the Valkyries come to fight evil and injustice. Pretty cool experience.

So I have this friend from the choir who works at Emory. Her name is like a little bird that you all know. I won’t say it here now since someone from Emory might read this someday and well I wouldn’t want to get her in trouble. She is a dear sweet friend and the one who visited me the MOST during my 3 week stay in the horrible rehab facility after my first knee replacment. We became fast friends after she showed me that kind of compassion. We got to know each other so much better. I have spent a couple of Thanksgivings with her family. Emory’s patient portal for WIFI sucks. It is open and does not have the bandwidth to handle all the traffic trying to get through. I used to work on this ethernet crap so I kind of understand bandwidth and how to boost it using software. And the priority at Emory has NOT been the patient portal and frankly it shouldn’t be. Patients are trying to entertain themselves and stay in touch and watch movies and shit. Like me. I’d rather the “good” networks be used by the professionals doing a job. But those networks are not available to patients without a password. Well this little birdie shared her password with me so I could get on a good network. She also did that when I was in that damn rehab hospital also an Emory facility. It makes all the difference in the world. It’s as good or better that what I have at home which means that I don’t use up bandwidth. I’m not a gamer at all so what I do is watch videos, YouTubes and send emails and stuff. Just a normal user not a power user by any means. But with a password, I could get on and watch a movie without getting that little circle that goes around and around spinning as it tries to build cache so it can keep showing video. And all it does is just spin around and around. So I’m on a good network. I started to watch Django Unchained again last night and got about an hour in before I went to bed so I thought I’ll finish that movie. Not. Watching a movie on a phone just plain doesn’t cut it. So what next — Ah… La Traviata is ON DEMAND for free. Now I had made the mistake of logging on the Met many months ago this summer and just listening to an opera while I was walking but didn’t watch it and well I got a bill that was let’s just say WAY bigger than my normal phone bill is. Turns out I am paying for all that data to drive an HD video just to LISTEN to an opera. BUT Now I know I am on a good WIFI network and don’t have to use cellular data. I can use WIFI instead. So I call up La Traviata and just listen to that music for hours. So much fun. So peaceful as I sat there and just took the chemo in with my mind lost in music. Opera is so rich — too rich really for one art form since it encompasses many arts forms and brings them together. You have to absorb amazing orchestral music, and interesting plot with twists and turns, complicated and flawed characters, incredible costumes and sets and like last night very creative visions the Director brings to their interpretation of the work written centuries ago. Throw in some ballet and dance and the most accurate and technically perfect voices you can find. It’s just too much to absorb. So last night I drank in the video and watched it again. I can’t tell you how many times I have seen La Traviata but I don’t miss it if I have a chance to see it again. So today, I just listened to it. Of course I knew what was going on and what they were singing about to each other. It was just a reception of creativity.

Did not crack a book all day and I had 3 with me including the one Jack and Carey sent me. And I had my kindle with more stuff to read. I did go over the lesson several times during the day. I am determined to see things differently.

So that’s my very full 10 hour day at the Winship Cancer center at Emory. Not bad at all. Just put on Billie Eilish Essentials. I texted Liz today and told her I was listening to the Ride of the Valkyries. She texted back that she was listening to Mantra for Healing by the Scared Sound Choir. Her link did not work but I found it finally on Apple music and listened to it for a little while. But then decided to get into La Traviata again. The mood will come to listen to Mantra for Healing. This is a long fight. One that will literally take the rest of my life.

Oh I did have a great visit today with the nutrition person — another woman -Stephanie. We went over my supplements and what I should continue and what I should not continue since it might interefere with chemo. That was very helpful. Most of what I have been doing is fine. But not all. She did not think I should take iron suplements with Vitamin C to help absorption. She did think I should continue Vitamin D and Collagen for protein and Psyllium hull powder to help with constipation. She said to boost my protein intake which is kind of what I’ve been doing. Eating a lot of smoked salmon. I mostly have been eating what I feel like eating at the time. Sometimes it’s fish eyes (tapioca) or yogurt with maple syrup or cereal or chicken soup or eggs. Or the wonderful meals people have been cringing over. Pete, my republican friend, is bringing me more meals this weekend. He’s become like a personal chef. Which is great for me since he is very good at the art of cooking.

It’s 10 PM and I’m gonna stop typing for a little while. We’ll see if I make it back or let this fly a little later. BAD GUY is playing. I love this song.

10:40 I lOVE YOU is playing.

It’s not true
Tell me I’ve been lied to
Cryin’ isn’t like you
Ooh
What the hell did I do?
Never been the type to
Let someone see right through
Ooh

Maybe won’t you take it back?
Say you were tryna make me laugh
And nothin’ has to change today
You didn’t mean to say, “I love you”
I love you and I don’t want to
Ooh

Up all night on another red eye
I wish we never learned to fly
I
Maybe we should just try
To tell ourselves a good lie
I didn’t mean to make you cry
I

Maybe won’t you take it back?
Say you were tryna make me laugh
And nothin’ has to change today
You didn’t mean to say, “I love you”
I love you and I don’t want to
Ooh

The smile that you gave me
Even when you felt like dyin’

We fall apart as it gets dark
I’m in your arms in Central Park
There’s nothin’ you could do or say
I can’t escape the way I love you
I don’t want to, but I love you
Ooh
Ooh
Ooh
Ooh
Ooh