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CoolBreeze · 11-01-2013, 07:02 PM

It's kind of hard, when we are naturally positive, hopeful yet realistic, to start to feel down because of pain and heath problems. I completely understand. Pain is increasing, I'm exhausted all the time, I sleep WAY too much and hate it, and I'm finding it harder and harder to find things to feel good about on a daily basis.

I'm not depressed like I was post C-Diff but I am in pain and having trouble doing anything. As the "funny cancer blogger" I'm having a much harder time coming up with humor in this situation to write about.

I think that's okay but it doesn't make us feel normal, does it? I'm sorry. I hope it's the dex and the wean will get you back to your old self. Maybe your symptoms are some sort of neuropathy or something?

Don't feel like you have to be positive all the time here. This is the place where we all should understand how hard this is - to be Stage IV, in treatment forever, all the pain and side effects - it's terrible and who else can understand but those who are living it?

Yesterday, I had a bit of energy. Very rare. I cleaned the living room, so trick-or-treaters would not look in and see dog toys everywhere and a dirty carpet. I had enough energy to dust, vacuum, mop. Which I haven't done in weeks. But then I fell down - tripped on a vacuum cord. And, I'm in horrible pain today like a 90 year old would be. Bruised, achy, bones hurt.....I'm in my 50s, this is ridiculous that a fall i my house onto a carpet could do this. But it just made me think - THIS is my life? I'm young, I am still mentally healthy.....but I'm frail like an old person. It's hard to match the reality with what we think should be the reality.

11-01-2013, 07:02 PM	#42
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: NEDenise Downer Alert! It's kind of hard, when we are naturally positive, hopeful yet realistic, to start to feel down because of pain and heath problems. I completely understand. Pain is increasing, I'm exhausted all the time, I sleep WAY too much and hate it, and I'm finding it harder and harder to find things to feel good about on a daily basis. I'm not depressed like I was post C-Diff but I am in pain and having trouble doing anything. As the "funny cancer blogger" I'm having a much harder time coming up with humor in this situation to write about. I think that's okay but it doesn't make us feel normal, does it? I'm sorry. I hope it's the dex and the wean will get you back to your old self. Maybe your symptoms are some sort of neuropathy or something? Don't feel like you have to be positive all the time here. This is the place where we all should understand how hard this is - to be Stage IV, in treatment forever, all the pain and side effects - it's terrible and who else can understand but those who are living it? Yesterday, I had a bit of energy. Very rare. I cleaned the living room, so trick-or-treaters would not look in and see dog toys everywhere and a dirty carpet. I had enough energy to dust, vacuum, mop. Which I haven't done in weeks. But then I fell down - tripped on a vacuum cord. And, I'm in horrible pain today like a 90 year old would be. Bruised, achy, bones hurt.....I'm in my 50s, this is ridiculous that a fall i my house onto a carpet could do this. But it just made me think - THIS is my life? I'm young, I am still mentally healthy.....but I'm frail like an old person. It's hard to match the reality with what we think should be the reality. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.