Anne started out the year with new energy and enthusiasm. She went on lunch dates, visited friends, and started the application process for the trials. She quickly learned she had not been accepted. With the pleural drain now in place, she has had too many medical interventions. This means Anne will do the third line of FDA approved chemotherapy for LMS, trabectedin.
In the following weeks, Anne said goodbye to her favorite surgical oncologist, who has been with her every step of the way since her diagnosis. He is off to moving closer to his grandbabies, and no one can blame him for that. Anne attended chemo class—something she has done with each new regimen. She learns what to expect, asks questions, and schedules her appointments.
Trabectedin is different than the others because it is administered over a 24 hour period once every three weeks. Anne will be connected to a pump that holds the medication, go home, return the next day to be disconnected and receive a Neulasta shot. (Neulasta helps boost white blood cell production to ward off infection.)
For Anne’s first dose, she stayed in the hospital in case there were any complications. Everything went smoothly. Days later, Anne was back at the hospital for a stent exchange. Anne has had stents in her ureters (tubes from kidneys) for the past year. This is a preventative measure in the event she needs surgery again. Because the ones removed were still in good condition, she will not have to have this done again for one year.
Throughout February, Anne continued her new chemo regimen, going to the clinic every three weeks to get attached to the pump, which she named “Fred.” I joined her the following day when it was disconnected. I met Anne’s neighbor who has volunteered to drive Anne to all of her appointments. She tells Anne often, “You are my only responsibility.” Anne has asked another friend to “bling” Fred’s home, a carrying pouch. Anne also now needs to care an emergency kit in case Fred ever becomes disconnected. We joked she needed to wrap the tubing with a feather boa.
While taking care of Anne, her husband and son also did what they could to help her father. He fell, injuring his leg, and requiring hospitalization and rehab. A week of snow and cancellations threw a wrench in everyone’s schedule. Anne and her family enjoyed the unexpected together time.
“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” As Anne has said since the beginning, this a journey of one step at a time. It is taking life day by day, appointment by appointment, reevaluating and redirecting with each new piece of information. Anne continues to readjust her thoughts and expectations to continue the journey as long as possible.
Follow Anne’s Journey with LMS
Review: Anne did not qualify for clinical trials and started the third line of FDA approved chemotherapy for leiomyosarcoma. March 2019 I took Anne out to lunch. Moving around took great effort and focus. At the restaurant, Anne barely touched her food and...
Review: Anne has been dealing with the ongoing side effect of pleural effusion (fluid around her lungs). After her second admission to the hospital, the doctors decided to give Anne a chemo break through the holidays. Two admissions later, a more long-term solution...
Review: After repeated hospitalizations for pleural effusion (fluid around the lungs), Anne’s doctors have agreed to a chemo break. This will give her body a much needed rest and give her a chance to enjoy the holidays as much as possible. November 28 Despite not...