My LMS adventure

When I went to Moffitt last Monday, things didn't go as expected.  I was scheduled for labwork, then my oncologist, then round #7 of Yondelis (aka Trebectadin). That's not what happened.  The labs and oncologist visit went as planned.  Then I was sent to get a CT exam to see how the chemo is working. No food.... because it's a test.  (I was soooo grateful for the yogurt I grabbed that morning for breakfast). The test was scheduled late, I got lots of knitting done.  Then we saw the doctor for the results. The lung lesions are growing.  The Yondelis is not working. Chemo was canceled.  My oncologist works through the GYN clinic.  She has reached beyond her experience (I was her first patient on Yondelis).  She's referring me to the Sarcoma Clinic because they are more experienced in dealing with lung mets.   I have a first appointment with my new doctor on Friday. I've had a rash for the past two weeks, so my skin is breaking down more than expected.  Meanw

Gilda Radner was right.... It's always something. Tonight I coughed... and spit up blood.  I'll call if it gets worse.  I'm leaving a message to let my oncologist know.  I choose to believe that it is a good thing.   That the chemo is killing the lung lesions, and they are exiting this way. There's probably a negative way to view this. UPDATE: 6/4/2017 It happened again.  I think I know what triggered it.  I generally am sitting/standing straight.  When I bent over for several minutes to lean into a friend's car window to talk, I started with the blood again. Per the doctor on call at Moffitt.  This is not an unusual side effect.  If it gets worse, call and come into the hospital.  So far, it stops after about an hour.  But that's a strange, scary hour.  It gets my attention. My next scan will be in a few weeks.  We'll find out then if a lesion is "missing."  Hopefully, I have coughed one up....

I never met Amy Reed.  She was diagnosed with the same sarcoma I had, a couple years before I was diagnosed. http://www.philly.com/philly/health/Philly-patient-safety-advocate-physician-Amy-Reed-dies-leiomyosarcoma-morcellator-Penn-FDA.html She's my hero.  Rest in Peace.

Yesterday was Cycle #6 with Yondelis aka Trabectadin.  I love this drug.  I know it is expensive, and new.  I live near Moffitt Cancer Center in Tampa, so the Monday and Tuesday visit every three weeks is not bad.  They've got me on OnBoard to keep my red blood cells up.  This is not the first drug for me, I've listed my previous treatments at the end of this post. Here's how my treatment goes: Monday morning, I go to Moffitt Cancer Center, report to the lab, get blood drawn, and the port accessed.  Next stop, Gyno Oncology, where I check in with the Medical Assistant (weight, Blood pressure, pulse, temperature,)  Then I visit with an advance practice nurse, who reviews medications, allergies, current complaints, symptoms, questions for the oncologist).  Then I see the oncologist.  Questions asked and answered, next steps for treatment discussed.  Yesterday, we discussed when the next scan would be.  Ordinarily she gets scans after 3 rounds, but with my interruption d

Two weeks ago, my roommate brought home an 8 week old puppy.  She was the runt of a litter with four boys... so she became known as "Sister" aka Sissy. The timing is good.  I'm recovering from the broken ankle, and now have permission to put full weight on both feet.  So I can walk the dog. Her breed (Australian Sheep dog aka Blue Heeler) requires an active family.  But I'm just getting used to having a puppy (my last puppy was 25 years ago).  Sissy is bringing back wonderful memories of my old dog. I still miss my cat, but this dog has been delightful.  Roommate is already on board with keeping her when I'm gone.  That was one of my fears, I'd abandon a little furry beast who didn't understand why I was gone.

I'm skeptical when someone claims they have the "truth."  Frequently, they are just reflecting their belief in their universe. Here's what my universe looks like. People are basically good and lazy.  We are formed by our genetics and habits.  We tend to think everyone is like us and our friends.  We are both right and wrong. We've learned to trust people like us, and fail to double check what they do and say. Politically, I hate the current name calling.  It takes more than a sound bite, or FB comment to make someone change their mind.  But we still need to listen. What I hear when the current president speaks.... FEAR and EGO.  He's afraid of anyone different than him, and fails to realize the USA is made of many different people and cultures.  That is what makes us strong... pulling from the strengths of many, and learning from the history of all. Truth is just a word.  Saying it doesn't make it so.  Please let me see your reasoning.  Or tell