Taking it day by day...Romedepsin isn't an easy one

The drugs mount and my discomfort with that does too. Dr. Mellott has added an IV for nausea and will add an additional one this Friday. I am on 3 different oral drugs as needed to try to make me feel better. But...they really don't. I continue to try things that sound good - carbonated water, different foods...anything that sounds like it will calm my stomach and take away the malaise. Nothing really works. 

I met with her this week. We need to do 2 rounds of 3 IVs before we can determine if I can tolerate the drug and to see what we think about it working. My throat is better - Andy told me I am sleeping a lot quieter now. Some rashes I had seem better. I think the "Frankenstein" lymph nodes on the side of my neck are a little smaller. My leg and foot that get a very itchy red rash are completely clear. 

And so...it is a mental game of staying positive when I can't accomplish much. I used to be an accomplishment junkie. I am much better now about that but the questions about "carpe diem" creep in occasionally. I only totally relax when I am the only one in the house. Andy is great about accepting where I'm at, but I still feel like I need to be moving forward somehow... especially when people are around. 

Which leads me to something I've been thinking about. 

I went to an ND a long time ago and am considering revisiting her, Dr. Kirsten West from Naturemed in Boulder. She is a very skilled specialist in cancer. The problem is that she is supplement based and I just burned out on taking so much. And...she's all cash. I got so tired of going to doctors who essentially can only treat those with means. It just seems wrong. I'm considering getting her opinion on the cannabis I'm taking and the Romedepsin. 

When I first went to her, one of her biggest recommendations puzzled me. "Give a hug before you give a hug." 

I have read some of the research about "the Cancer Personality." Essentially it is a person who can not recognize or express their own needs and a person that puts others' needs first. It's sounds trite. But I had a circumstance awhile back that proved to me that I fit perfectly. I needed help from a particular person who makes me feel safe in a particular area of my cancer journey. She is a fantastic researcher and she is not afraid to put doctors on the spot with hard questions. I tend to softball everything. 

Anyhow, this person was directly asking me if I needed help and I found that I really COUNDN'T say it. She called me on it an we eventually got around to it and she came to my aide. But, wow, was it eye-opening that I simply couldn't say it.

Taking care of others can be a compulsion and can make me want to isolate so I don't have to fight that compulsion. Since the beginning of this journey, there are friends who really want to "come sit with me" during IVs and such. I absolutely don't want that. I would feel like I need to somehow take care of them while I need to be taking care of myself. It's easier to just do it solo. Besides, I bring a ton to read and listen to and stuff. 

I find myself thinking about people who have hurt me because they pulled away or whatever. I find myself wondering if they could be dealing with similar stuff. As I'm sure I've said before, my only life regret these days is that I wish I was a more curious person who paused conversations more to more fully understand and learn people, rather than assume that I already know what they mean by what they say or what they are dealing with. 

So ... can I get a hug before getting one? 

One area this has definitely happened in is with a group of precious people from our old church, Mount of Olives in Mission Viejo. There are a group of people (mostly in the choir) who pray for me, contact me, send me cards and thoughtful items - and I have done very little for them over this last 4+ years. Before that, I may have "earned" the respect and attention through what I would do for others or in leadership roles. I am often astounded that these people stick with me when I give so little back. I see the message in it - of grace - of being loved without earning it. And I am so grateful. I know I am a nice person and a considerate person - I'm just trying to learn to be a more authentic person and to learn the lessons I am needing to learn though this thing. And I hope I can somehow give back or pay forward the astounding love I receive. 

And...I am trying to feel better. I even got back to coffee enemas today - knowing that they can relieve pain and discomfort and remove toxins to help us feel better. I know I need to be cautious as sometimes while taking a chemo drug they can be dangerous. So...I'm not going overboard and don't do them close to the infusion day. Sorry for the TMI but it's part of this journey, for sure.