General Update 9.25.14

The news is good. Things are stable. Mostly boring right now. I like boring. Admitted yesterday, 9.24.14, for another round of RICE regimen #2. My visit with the oncologist was routine this week. Lab values came up nicely, we think the chemo is working (best we can tell). I am going to get a PET scan on Monday October 6th to verify no other “hot spots” are seen in the body. By this, I mean, we are going to see if the cancer has spread to other lymph nodes. The initial PET scan showed stage 2 involvement, where the “home/origin” node was the visible one on my neck. There was “regional” spreading to surrounding lymph glands in some capacity. We are going to verify all those “regional” nodes are now silent and there are no other new ones.

Quick comment on PET scans. It is a test designed to measure glucose uptake and usage. They attach a specific juicy yummy glucose molecule that cells love to use for energy to radioactive material. I eat a very specific diet the day before the test to minimize any glucose in my body. Then I eat nothing after midnight. This gets the body hungry for sugar. All cells need sugar for their energy. Then they inject me with “radioactive sugar” and have me stay very still for one hour or so. Then this impressive machine will silently watch as my body is using (metabolizing) the sugar.

Cancer multiplies fast. So does healing wounds, for example. Anything of that nature will be metabolizing quicker. This test can pick up on patterns, areas, lymph nodes, incisions that are healing, and so forth because the sugar usage is super fast (hyper metabolic).

The spot on my neck where the original tumor was is still a noticeable knot. The working theory is that it has change from active cancer cells to a fibrous knot. I like fibrous knot talk, sounds hopeful to me. The PET scan should help to distinguish the speed of activity in the knot. It will probably “glow hot” on the scan, but should show much less metabolic uptake of sugar when compared with the initial PET scan this summer. Point being, it isn’t highly active cancer as much as a “healing and sealing” fibroid spot where cancer used to be. Hope that makes some kind of sense.

I slept a lot since Sunday. Rested and slept. Lazy to be honest. The previous week was busy, with my 50th birthday and traveling out of town briefly. I went out of town on Friday and returned Saturday; I went to a memorial service. My birthday was amazing. The memorial service for my cousin broke my heart; completely sad. A week of strong emotional contrasts for me.

We have decided on UT Southwestern for the stem cell transplant. MD Anderson is a financial “no go” unless I want to pay a lot of money out of my pocket. Not their fault. My insurance is not that good (very limiting and restrictive). It is complicated and I don’t really feel like trying to explain it. Bottom line: MD Anderson is out of network (simplified explanation).

God decides my dates to be on this Earth. If He’s not ready for me yet, won’t matter which hospital I’m at. If He’s ready for me, will not matter which hospital I’m at. Just the way I see things. Yes I wanted to go to MD Anderson, but things don’t always turn out like we want. Oh well. As my oncologist has said to me repeatedly, UT Southwestern hasn’t killed one of her patients yet.

Lots of paperwork shuffling going on right now. Trying to get records from 3 hospitals and 3 doctors is a bit daunting. Once the paperwork is starting to pile up on their desk at UT Southwestern.  A date will be set for an initial consultation or however this works as soon as they have enough paperwork to review my medical condition.

I don’t really have any other news at the moment. Things are stable, routine, and almost (almost) boring right now. If my PET scan turns out ok, could we be looking at initial stages of remission possibly? That is what we have to have for the stem cell transplant.

Hanging out in room 728 at the hospital. Lots going on in my head and heart about the future, pondering many things.

I have a question I’ll throw out to all of you: “have you or anyone you know personally radically changed their work life after chemo and cancer?”

I have some qualifications and thoughts surrounding this question to provide context. I’m not thinking or asking about inside changes: emotional, spiritual, or mental. I think that is a given for most of us. What I am asking and pondering is external changes, specific to job, home, bills, responsibilities, and that kind of thing.

My long term focus is on changing my work life around to the degree possible so that I can have more free time with family and loved ones. That is at the heart of my question. Who do you know personally who came out of a life changing situation and decided to downscale, or otherwise make radical life changes so they could be “more free” from mundane repetitive responsibilities? What did they do? How did they rearrange their life?

An open window spanning across time. Symbolic of my life right now.

An open window spanning across time. Symbolic of my life right now. San Jose Mission, taken May 2014 during a short trip to South Texas. 

I want to reduce unnecessary bills, attachments, work a little less, spend less, and be able to have more time with family and friends. I want to travel to see family and friends. My mom, step mom, and step dad are all in their prime right now. I would like to be able to travel and see relatives, my brothers and sisters, uncles, cousins, and maybe even throw in an occasional low cost travel to somewhere I’ve not been in North America.

Get the idea? Have you or anyone you personally know restarted their life after chemo to focus on relationships more and outside the home responsibilities a little less?

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About Robert I Baxter

Greatest Commandment is #1. Follower of Jesus, husband, father, RN, love photography, cancer survivor of Burkitt's twice (2008 & 2014). Stem Cell transplant November 2014. Work in a neonatal ICU.
This entry was posted in burkitts, cancer, healing, hope and tagged , , , , , , , . Bookmark the permalink.

1 Response to General Update 9.25.14

  1. Frances Johnson says:

    Thanks Robert should see you soon. Frances

    Frances H. Johnson


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