Michael2.0

Hey Sole,
Thank you for sharing and for the encouragement and support. I hope your journey continues to be so successful.

Thanks to everyone for the responses, encouragement and hope!

“Part of me (anyway) is reluctant to let go entirely of that dim outlook because 1) it’s an aspect of ongoing mental preparedness for bad news and 2) it is connected to that peculiar richness of life under the scythe. Urgency feels good still.”

It is strange to find comfort in not letting go of that urgent feeling. The first couple of weeks after dx were really hard. My whole life turned upside down. How to tell my 21 yo daughter who is away at college without throwing her world into a tailspin. When it all sunk in I felt I hit rock bottom. I feel if I dont keep up my realism of the situation mentally and all of the potential repercussions that I may have to go through that process again.
For me there have been two parts to this:
1. The medical side. Understanding the disease and learning how to navigate the system. As was mentioned accepting that frequent visits and testing and therapy are now part of your life. For me this has been the easy part.
2. Realizing you are at the center of an emotional storm that is engulfing all of your loved ones. That I am the cause of a lot of pain. That doesnt feel good. So you put on this armor suit for their benefit to show them everything will be ok even though inside that is probably the exact opposite of how you feel. Im not afraid of dying as much as I am leaving my daughter without a Dad or putting my family and friends through the ordeal of watching me suffer.
But….there have been lots of good things too. Truly realizing that people love and care about you and that you are valued and would be missed. Realizing the blessing that another day above ground is.
Thats the meaning behind my moniker Michael2.0. In two short months I have become a different person and the 2.0 version is frankly a much better person than the first version.
I work as a CT/Xray tech and just made it back to work this week. YAY! Last night I started my shift and an elderly gentleman was finishing his scan which was a chest abdomen pelvis to monitor his cancer. I asked the other tech if she needed help and introduced myself to the patient. We shook hands and he squeezed my hand and didnt let go. So I squeezed his hand back and had a short conversation and I wished him luck. Afterwards I found he had lost his wife and was alone on this visit. He just needed a little human contact and for the first time in my 27 year career I truly understood the power of my role in health care….like, truly understood it. Melanoma gave me that. Crazy.

Thank you so much for your reply!
I imagine all of us go through this initial stage of seeking information and people in a similar situation to hopefully find good news and some comfort. I searched and searched and found tons of vague and confusing statistics that often raised more questions than were answered. I just want to say how comforting it is to find a group of people that find themselves in identical or similar situations.
I am past the initial “freak out” stage and now have my rationality back to where I think I can process the informational load of a cancer diagnosis. Aside from all of the B-cells and T-cells and monoclonal antibodies there is hope. Real hope. I appreciate you sharing that with me. I’m not sure i’m quite to the point getting back to living (as I was before) but now that it is in my brain I will try.
Again…thank you for the reply and the hope!

Hey Bob,
I got home from work and read your posting hx. Sounds like its been an incredibly difficult situation to be in. Sorry man.
It’s like a catch 22….if you dont have stage III, they cant seem to do anything besides surgery. If you are stage III then therapies are available but…you have a more dire prognosis.
I have only been at this a short time but I can see how it can beat you down. I have been to Honolulu so many times. The last two times my flight arrived at 7-8am and I flew back at 6-7pm because those were the only flights available. I spent 2 hours at appointments. Getting to know the downtown Honolulu area quite well as I wander around waiting for my flight.
I wish you luck next week. Let us know how it went. Yes, it seems likely our paths will cross. Lets keep in touch and Im sure we’ll both be at Queens at the same time eventually. The Gathering Place 🙂
Aloha!

Hey Bob!
Thank you for the reply! Yes I am on Molokai and also get my treatment at Queens. The inter-island travel is a bear to deal with sometimes as Im sure you know. My Oncologist is Dr. Melvin Palalay at POB 2. He seems to me a great doctor. I’m very happy with my care. (less happy I need this type of care)
When you say you are waiting for surgery for your 12th primary, does that mean you have had 11 prior surgeries? Please forgive my ignorance as I am kind of new to this even though I have been an xray tech for 25 years.
Where are you on the Big Isle? I lived there for 15 years prior to Molokai and sold my Kapaau house in 2018.
Again thank you for your reply and anything you could share about your treatment would be of great interest to me.
Aloha!