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Old 07-09-2013, 01:38 PM   #37
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: And The Winner Is...

Friends,
Thanks for your all your thoughts. Concerns. Interest. Calls. PMs.
I found out, too, via discharge nurse, that I had a collapsed lung and a hematoma removed from the right one. I have no feeling in the right side of my abdomen. They say it will return.
Each day, I am stronger. My upper body took a huge unexpected hit: chest tube, lung collapse, emergency thoracotomy (that comes with a five-inch scar and a smaller one where tube was), and then another small incision in abdomen for the ablation. So I do upper body yoga exercises, reaching to get out of this place, letting my body tell me my limits. However, I am no stranger to PTSD, that is post traumatic stress disorder, and I have it AGAIN. I remember being wheeled into surgery, so calm, so reassured, so READY with such confidence. In a split second my world was hijacked again. More work to be done on that front. I will get to the bottom of it: how it happened, who was at the controls, etc.
It is a given. We are here to learn from each other: no procedures around July 4. Not a doctor to be found, except some mature ones well into their fellowships have seen me since I nearly died. Right after I was put in a room, every doctor was gone, gone, gone.
Every day I push a little more. Intubation area still painful as I have that chemo thin-skin. All this and I was still recovering from the liver biopsy between the ribs, done ten days earlier.
As I've learned, the blood, from many sources, will become my own. I never had a position on transfusing, but glad someone was there to make the decision for me. It was one of those items I could never really commit to--whether to accept blood or not. When I get the final report, I will know how many pints I received.

I am walking, doing breathing exercises, but missing the pool and ocean and will for two more weeks, at least. I am very active and this really stole a chunk of my summer.

I keep listening to Pink's GREAT ESCAPE. I really feel like the King Of The Great Escape, at times. Then I listen to it because I need to know I CAN BE the King Of The Great Escape. We get our inspiration where we can, right?

Listen if you'd like, it may be your inspiration, too--
http://www.youtube.com/watch?v=_Wl5-audkPY

Added: When my daughter was three, she had heart surgery and her thoracotomy scar curves around her left shoulder. It looks like an exclamation point. The surgeons worked from her back so she would be saved an unsightly scar in or around the breast. Now we match, but mine is on the bra strap curve. Just spoke to my dermatologist, and she is going to erase as much as possible. I LOVE HER.

Love
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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