A new adventure

First I want to say thanks to my wonderful husband and family and friends who have supported me through these turbulent times of switching therapy.  My doctor completely agreed with my desire to start TDM1/Kadcyla last Tuesday, and as of today I have been on it for 5 days, without too many problems.  It was a very long first infusion, wait for the doctor's room, then wait for the doctor, then talk with the nurse, then talk with the doctor, then schedule next appointments, then wait for a chair in chemo, then start an i.v. and wait for the pharmacist to mix the drug, then hook me up...... and finally infuse for 90 min and monitor for another 90 min to make sure I don't have any adverse reactions. 
Phew..... long day.  But next time (in 3 weeks) it will take probably half that time as they will infuse the med faster and observe shorter.

No immediate reactions at the clinic.  At home I've noticed my nose has been running more, my pain is fairly constant (but I alternate tylenol and ibuprofen which keeps it in check), and I have some burning gastritis like pain in my epigastric (inferior to the sternum) region, which could be an ulcer, irritation from the pain meds, or a mild reaction to the chemo.  Called the on-call oncologist just in case and increased my acid-reflux blocker.  At first I worried that it was my liver, as liver toxicity has been reported with this drug.  Unlikely.

I have been fortunate to start meeting some survivors as of lately who've inspired me to let go of my fear further.  I am astounded at their resilience and I hope I can inspire others with my many years of survival story too. Through Relay for Life at my church, I met a man who'd had testicular cancer and lymphoma (stage IV) 19 years ago!  I'd have never guessed- I love hearing from people like this, even if it is just a few years, it inspires me so much.  So if you too are a survivor, please post a note saying how long you've dealt with your disease and how you've defied the odds. 

As Mother's day rolls around I am reminded of my own mother who defied the odds with a similarly horrible disease, amyloidosis.  And how she overcame all the negative emotions and established a new normal which was unpresidented and lived a full ten years with the beast.  This is a disease that is often caught late, and patients usually die within a year of diagnosis.  Her diagnosis was not early, but her will was unrelenting, and she endured a bone marrow transplant, multiple chemotherapy cocktails, put up with pulmonary edema, congestive heart failure and ultimately complete kidney failure and finally dialysis.  She passed away very peacefully at home two years ago on May 4th.  She was well loved, and she and I had many in-depth conversations about live, death and our shared faith prior to all that.  We had a great relationship, and she taught me alot about living with a terminal illness.  Thanks Mom and Happy early Mother's Day.

4 generations of Buck-Schwickerath-Ness's

 

Doctors Ness and Ness beside the "Ness" conference room in 

honor of Mom's service to the clinic