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Posted

I would like to hear how others deal with the ups and downs of this disease. Just about the time I have shoved it out of my mind and gotten on with the business of living a scan comes due and the scanxiety that comes with that then something shows up on the scan and the wait to see the doctor starts. How do you deal with these highs and lows?

Posted

Hey Cheryncp123,

I've been doing this cancer thing now for almost 10 years (I have another cancer life- Melanoma 3c, so I've been doing this for awhile) and it gets me every time. Scans, treatment decisions, transitions, yup all of them send me to crazy town.  So I pray and bleed my heart out to the One I know cares more than anyone.  I also intentionally plan fun things with friends.  My friends know I go crazy before scans or decisions or any transition time, so they're happy to provide a temporary distraction for awhile.  I remind myself that I have many people who I love and who love me.

I also use the "trip to crazy town" as my friends call it, it to help me figure out what I want.  Yes, I want to be healed, truly cancer free with my 23 year old body again (HAAA!), but often the crazy talk in my head is also telling me something else.  I think I'm just returning from crazy town.  Right now I'm trying to make treatment decisions and, while they're an educated guess at best, I'm complicated because of two active cancers, so figuring out the way to go is complicated (and of course seems to have taken a long long time to make this decision).  

But as I reflect on the decision making process, I've realized what I want in the treatment.  I've figured out my priorities and what I'm comfortable risking.  At the beginning of this I didn't know what priority I put on things.  I couldn't answer the question, "what do I want" with more than "to be healed".  This is a given. of course I want to be healed!  But how much quality of life am I willing to give?  If I am completely deafened (I am near deaf, now) is this ok?  If I can no longer walk because of inflammatory arthritis everywhere, is this ok.  What am I willing to trade?  

Wrestling with these questions and coming up with some kind of squishy answer has been huge.  The decision is still coming (we'll decide on Monday) but I have found peace with it.  Or at least for now, I'm not on the indefinite loop riding around crazy town in my head--off ramp found!  And this is huge.  

So I guess my strategy is to :

  1. Acknowledge God plus nothing is enough because I was loved before I was born! (I think of this as taking God to crazy town with me).
  2. Be good, kind, and gentle with myself.
  3. Lean into my friends
  4. Listen to hear if I'm telling myself anything in the crazy and learn from it.
  5. Be good, kind and gentle with myself and tell the committee in my head that I've heard them so "thank you , you can shut up, now".
  6. Continue being good, kind and gentle with myself and love others.

I wish you peace (and an appropriate off ramp)

Shalom,

Julie

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