March 25-29 update **Radiation wk #5 + chemotherapy (cycle 6)
I pasted an update below from a friend who stayed with Stacy in Stanford about 3 weeks ago, but it has good insight into life in treatment from Jill’s perspective. Love that Jill! <3
Stacy was supposed to get chemo last week (March 18th) but her blood counts were too low, so she finished out week #4 of radiation enjoying a few unexpected days of rest and feeling ok! Stacy started her 6th cycle of chemo today and marches into her 5th week of radiation. She has a super badass sunburn from radiation and is exhausted but is wholeheartedly reaching to find the stamina to finish up her last 7 days of radiation and last 2 months of chemo. The tiny warrior is at work. This week labs look good and her body is fighting the good fight valiantly! We are hoping the Oncologist can change her last 2 chemo cycles from in-patient to out-patient, which Stacy really prefers. That means a few more weeks of unexpected housing expenses, but well worth avoiding the trauma of living 5 days in a loud, active fast paced institution not really equipped to support the emotional needs of a patient. There is only so much trauma one small person can take and she is trying very hard to be brave. I’ve never been a long distance runner but I can imagine this is the part of the marathon where you think you’re just not going to make it to the finish line. So much effort goes into every single step.
Your thoughts, prayers, hopes, cheerful words and gifts mean everything to Stacy Please keep it up! She needs it most right now.
with love & thanks,
Jill’s update from
This is Jill. I am a friend of Stacy’s. This message comes a little late, but I will update through her treatment starting this week (3/18/19).
Just a little background on our relationship. I met Stacy at a cancer conference in Sacramento 10 years ago. Ironically or not, we are the same age and were diagnosed with breast cancer just a few days apart in two different worlds - Stacy in Afghanistan and me in California. For those of you that know Stacy well, you know that she is full of some kind of beautiful magic. Her spirit is infectious. She befriended me in line for a cup of tea. We had both been longing for someone our age to connect with. As I sat next to her for the next 2 days at the conference, I couldn’t help but cry every time I thought about this stranger sitting next to me that I felt like I’d known for a lifetime. She was like an angel sent down from Heaven.
I had the honor and privilege of spending Week 2 of radiation with Stacy down at Stanford (March 4-8). In comparison to her prior week, Week 1 (chemo and radiation) - “The Week from HELL,” where she lost 7 pounds as she was too sick to eat, she had a pretty good week, but treatment is NEVER without struggles.
I have compiled a few updates I posted on Facebook and added some detail to her Week 2 of radiation at Stanford:
Regrowing bone marrow is HARD work!!! It’s exhausting and painful. Stacy slept most of the first two days waking up to eat in between. She has an appetite! That’s a good thing! She had labs before her radiation and received a call within an hour from her doctor letting her know she was neutropenic, which means her white blood cell count was really low leaving her with almost no ability to fight infection. This means wearing a mask in public places, wiping down all surfaces in her apartment, LOTS of hand washing and hand sanitizer! She caught a second wind after her 4 pm radiation and despite being neutropenic, she wanted to go for a walk and browse through the nearby Container Store. So, she masked up and armed herself with easily accessible hand sanitizer re-applying every time she touched something. She was like a kid in a candy store! She found lots of treasures for her new apartment back in Chico. We passed by a beautiful restaurant and she said to me, “Wouldn’t it be fun to go have a little glass of wine and appetizer at that restaurant?” I found myself going back and forth with the friend role vs. this very important caretaker role that I am not used to. I wanted to be sure she wasn’t pushing herself too much. Rest or a night out? It was clear she needed a night out. Boy…you know when things are meant to be, you just KNOW IT?! Our waiter was from Turkey. Stacy used to live in Turkey so struck up a conversation with him. I love watching her connect with people. It was so fun for her to be feeling good enough to be OUT. We had a great night!
Day 2 was a lot of sleeping, waking up to eat, followed by more sleep. She just couldn’t keep her eyes open as much as she wanted to. I’m not gonna lie. I thought maybe she overdid it the night before. I strongly encouraged her with lots of love to listen to her body and rest. She started having a lot of bone pain in her lower back and long bones. She knew it was from the shot she got the previous week after chemo to help her white blood cell production. The pain she was experiencing means the medicineis working. It’s her body trying to heal itself, but it hurts… A LOT! She would get shots of pain that would take her breath away making her twitch so we spent a lot of time walking arm in arm for stability.
On Wednesday, Stacy flew into radiation while her radiation tech, Josh, serenaded her. Literally, see photo. I was invited back and able to capture some pictures of what it’s like to go through radiation. She is still really TIRED. Her body requires lots of sleep, but still feels so much better than the previous chemo/rad week. I think she is playing a game of tug-o-war with herself (or me! lol) figuring out a balance of activity and allowing herself and her body to rest. It probably makes it harder when her friend is here. We are constantly negotiating. She had labs again to re-check her numbers. We waited all day for the results thinking she might need a blood transfusion or platelets due to her low energy level. She was thinking that no news was good news. The results finally came in late at night. The doctor recommended a couple pints of blood before she headed home to Chico for the weekend. After additional testing, she learned her iron level was too high to receive blood. This is a side effect of having multiple blood transfusions. She ended up needing a shot to boost her red blood cells, but we learned it would take insurance 3-5 business days to approve the administration and bottom line, payment, of the very expensive drug.
Thursday, Stacy had radiation followed by a visit with a new radiation doctor, Dr. Hiniker, as her doctor was out of the country. She was excited to meet this new doctor as she is a pediatric oncologist and knows a lot about Stacy’s rare cancer as it’s a pediatric cancer. She is experiencing a lot of pain in her arm where the tumor is and has limited use of it. The pain seems to have changed with radiation. Stacy made the following comment to the doctor, “It’s like the nerve is pissed off, so the neighbors down the block, (i.e. shoulder, forearm and hand) are not happy.” It’s good to have a sense of humor! Dr. Hiniker gave Stacy some helpful information about what is going on in her arm/tumor with the introduction of radiation. Stacy has seen many doctors for different opinions in the 5 months she has been at Stanford. Dr. Hiniker went into her chart and read all the doctor’s notes that Stacy had consulted with and assembled a comprehensive summary assuring Stacy that she was on the right path and made the right decision to not have surgery and go with radiation instead. She reiterated and gave Stacy continued good news about the prognosis of her cancer despite how aggressive the treatment is. She said Ewings Sarcoma is very radiation and chemo sensitive meaning it responds well and has a better long term prognosis. Also the fact that it is exo/extra skeletal is good. She said things like, “Everything about you is good. This should be something you can put behind you.” The only bad thing she said was that she was going to have a “rip roaring sunburn,” worse than the one she had with breast cancer.But we will take it!
She lost lots of eyelashes and eyebrows this week and had a little ceremony for them wishing them to RIP. It’s hard when you lose eyelashes and eyebrows. Without them, you really look and feel like a cancer patient. This is something that Stacy and I have shared with each other. The hair loss is way less important. Good news is hair grows back, but it’s still a bummer.
Stacy had radiation early on Friday morning. We were waiting around holding out hope the insurance would come through and she could get the shot to help boost her red blood cells and give her more energy, but we were assured the insurance would not approve the drug until the following week, so we hit the road. About 2 hours into our drive back to Chico, she received an email from her doctor with an appointment for that afternoon to get the shot. Apparently, this is just kind of par for the coursesometimes with certain offices. It’s a constant juggling act and requires a lot of time communicating and coordinating things. I am being polite. It’s frustrating.
Our week was full of a lot of down time, sleep, rest, normal moments outside of cancer life, mini adventures, heartfelt conversation, laughter, tears and lots of LOVE. So much LOVE for this “Bella.” This is what all the handsome waiters call her at our new favorite restaurant in Stanford.
Last week Stacy had a couple friends come down and stay with her for Week 3 of Radiation. I think her week went well. All I know is that she got to ride in a Tesla!
Today, March 18th, is the start of Week 4, which will be her second time she is having the dreaded chemo/radiation combo. She has a long day today. She had radiation this morning and has 2 chemo infusions later this afternoon and into this evening. We are hoping and praying for better results this time around! She plans to make a few changes and take some additional meds to help combat the nausea. The effects of her treatment are cumulative so Stacy will continue to get more tired as her treatment progresses. Please continue to keep her in your prayers and thank you for the LOVE and SUPPORT.