Review: In early October, Anne developed pneumonia and intestinal infections resulting in a week-long hospital stay with very limited visitors.  After a short break in chemo, she completed cycle 8 of 9 of her chemo treatment. October 24 Anne had scheduled an appointment with the Seattle Cancer Care Alliance (SCCA) for a second opinion on her treatment.  She completely trusts her doctors but knows uterine leiomyosarcoma is rare.  With the mounting side effects, she wanted to meet with a sarcoma specialist to see if there were any other treatment plans available. I arrived at Anne’s home to discover a new small step had been put in at their front door and garage door to make it easier for her to get in and out.  Anne also started walking with a cane and developed what I can best describe as a smoker’s cough (though she stopped smoking years ago).  Simply tying her shoes and getting in and out of a chair required great concentration and effort.  As we loaded in Ray’s (Anne’s husband) truck, I was given multiple warnings of riding with the “Jersey Driver.”  The warnings were warranted.  I silently said my prayers as the Jersey Driver liberally used the brakes, muttered obscenities and driving tips to those on the road with us, and reassured me he had never been in an accident.
man comforts cancer patient in clinic

Ray is never far from Anne’s side to support in any way, even if it is just to let her know he is there.

Making our way through SCCA to check in to Anne’s appointment, we stopped several times for Anne to catch her breath and rest her legs.  The view from the waiting room was gorgeous as we watched hydroplanes take off and land in Lake Union.  The exam room was a stark contrast as we overlooked a narrow alley with an uninspiring white wall out the window.  As the nurse took her vitals, she was concerned with Anne’s oxygen level.  It was at 89; an acceptable level is 92.  Anne explained it as lingering pneumonia.  Her nurse disagreed, however, saying it should be cleared by now. The doctor was concerned about the oxygen as well.  He explained Anne was on an unusually high dose of her chemo medications (Gemcitabine and Docetaxel). Most patients are only able to tolerate six cycles; Anne just completed eight.  A side effect of the Docetaxel is pleural effusion, or a buildup of fluid around the lungs making it difficult to take a full, deep breath.  This what the doctor believes is happening.
cancer patient completes paperwork at doctor's office.

The paperwork never ends. Anne completes an intake survey.

Because Anne’s last scan, taken after cycle 6, showed some shrinkage, it would be unethical to take her off the treatment plan at this time.  Ray is a man of few words and lets Anne make the decisions regarding her care.  It was very subtle, but as the doctor said this, I saw Ray’s whole appearance relax.  I asked him about it later, and he said that he will always support Anne’s decisions but yes, he was relieved the doctor did not want to change what seemed to be working. The doctor said they could try lowering the dosage to see if that would help manage the side effects.  He continued to explain leiomyosarcoma does become resistant to treatment.  The timing is different for everyone.   At that point, they could see if she qualifies for any of the clinical trials conducted at SCCA.  Immunotherapy is another possibility to explore.  It has not had high success rates with leiomyosarcoma, but because it is such a rare cancer, there is little data. Lastly, he suggested starting the process of getting a DNA sample from Anne and a sample of the tumor (from Anne’s regular hospital) to help determine the best course of treatment.  The first priority, however, is getting her oxygen back to an acceptable level.
cancer patient reads informational booklet about DNA testing with Tempus

Anne reads an informational booklet about DNA testing.

Anne agreed with the doctor: stay the course, adjust the dosage to manage the side effects, and start the process of getting a DNA sample.  Another nurse came in to explain the process and take the sample which required Anne to spit into a vial.  Because dry mouth is a side effect of chemo, that task proved to be more difficult than it seems. As Ray wove in and out of Seattle rush hour traffic toward home, Anne rested her head against the window, exhausted from the outing. I would say it was a productive trip.  Anne and Ray got answers to questions, assurance she is on the right track, and knowledge of more options to explore.  Her fight is not over yet. For that day, there was a sense of certainty, a second opinion her treatment is the best choice for now.  And sometimes, that is all one needs to keep going.  

Follow Anne’s Journey

Anne’s Story: Every Day is a Gift

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...

Anne’s Story: Meet Fred

Review: Anne’ chemo treatment was no longer working and the side effect pleural effusion had become unmanageable resulting in a pleural drain being placed in her lung sac.  The doctors decided to give Anne a chemo break over the holidays to give her body a rest and to...

Anne’s Story: Chemo Break & Decisions

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...

Sparkson Photography

Jennifer Jones of Sparkson Photography is a documentary style family photographer specializing in family, newborn, and school portraits. Serving Kitsap County, WA and surrounding area.

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