It’s my favorite month of the year – mostly because it’s warm and sunny and summer; also because my birthday is the 26th. This year I’ve decided to celebrate all month, I deserve it! (Heck, we all deserve it!) I will be 55 this year. Next month is my 5 year anniversary of living with Metastatic Breast Cancer (MBC). 5 of 55 years with cancer. That doesn’t count the 6 months I dealt with it back in 2009.
Anyway, yay! The cancer is stable.
I have had 6 infusions of Enhertu and it seems to be keeping the cancer quiet. I’ve noticed that my hair is falling out a bit more, it’s quite thin. I’m also taking a fair number of medications to keep other side effects at bay.
I discovered that the steroid I get as a pre-treatment actually helps with the pain in my hip. So, for the time being I’m taking additional steroids daily to make moving about easier. It’s helped tremendously. My physical therapist says I’ve made great progress over the past month. Here’s to hoping that continues!
I have an appointment mid-month with my orthopedic oncologist to see if he can help with eliminating the hip pain. More on that later.
My CA 27-29 tumor marker is a way we monitor for progression. I get tested via blood that gets sent to the Mayo Clinic in Minnesota, every three weeks when I have my treatment. My numbers are still hovering around 100 which is not great but I’ll take it. If it is below 38 then the cancer is quiet and not active. I’m still doing wonderful overall though so I’m not too disappointed.
I’m still working full time with a very flexible schedule. My remote work makes for lonely days but a few wonderful friends make time to come by for tea or lunch which makes a big difference. Later in the summer we’ll do some traveling as a family. This month will be fun at home.
Summer flowersThis crazy cat makes me nervousAppreciating that I have enough hair for it to blow in the wind
Hello everyone and happy May! I feel like I can’t pass on saying May the Fourth Be with You, even though I’m not big into Star Wars.
I do feel like this is a good news post. I have information from both a PET/CT scan of my entire body and an MRI scan of my lower back.
I have a fracture in my hip that was not caused by a fall or any kind of trauma. It just developed because my bones are weak. The fracture is right in the ball of the hip joint (the acetabulum) where the femur connects. Every time I stand up the femur pushes on the acetabulum where the fracture is, causing pain.
So, my cranky hip is not progression from cancer. Yay!
My tumor marker numbers look good. Last month was 94, last week it was 102. I’ll take it, it’s much lower than the 800 I had in January! 38 and lower means no active cancer. For now, I’d like lower but will be patient!
All smiles because the cancer is under control, for now!
Now the longer version. Stop reading here if you only wanted the basics.
My main oncologist is calling the orthopedic oncologist that did my hip stabilization procedure back in December 2022 to ask if there might be anything he can do. Still waiting on that.
I had my 5th infusion of Enhertu, which is an IV chemo. At this point my side effects are mild and manageable with a combination of my being kind to myself and medication. I don’t have major hair loss, just some shedding. I have some numbness in my fingers now and again (neuropathy). I get the hiccups a lot. Sometimes so loud and violently that they wake me up; sometimes Glen has to go sleep elsewhere because they just don’t stop. The biggest issue has been nausea and vomiting. I think I have that managed by medications, we shall see.
I am feeling very, very grateful as many people do not tolerate these drugs as well as I have.
Back to my hip. I’ll be mainly working with my physical therapist now to get me stronger and get some cardio going. He explained today that unless we can do something with the hip fracture, I probably need to accept that an assistive walking device, like my cane, is a part of my future.
I’ve got a home exercise plan for weight training and other exercises to improve my balance and all that fun stuff. I need to get cardio into the mix so I’ll start with our home treadmill. Ultimately, I’d like to get to the pool to do some walking and other exercises in a non-stress environment.
My goal is to be able to walk outside on the trails by July. I’ll need more strength and stamina and I’m really excited about working to reach this goal. I’ve really missed getting out of the house.
I’m still on a ton of pain medication, including the fentanyl patch. It helps tremendously and I don’t notice any impairment from it, yet I’ve avoided driving as much as possible. That makes life rather difficult but not impossible.
In non-cancer updates – Evelyn is finishing up her semester exams of her sophomore year at CU Boulder. She will live at home this summer because she got an internship (in mechanical engineering) at a company across the street from our neighborhood!
Maddy is wrapping up Junior year and some IB (International Baccalaureate) testing. She just had her last dance competition of this year, now auditions for next year and the spring recital. If you are local and want to join me at any of her recitals let me know.
Glen is busy with work and enjoying the warmer weather. He’s back to running in the foothills, especially on the weekend. He is currently outside working on the gardens. Glen and Maddy did some campus tours in the LA region earlier this spring.
I’m keeping myself busy with work and working on strengthening the local MBC network that I started. Overall I’m feeling better so it’s been a blessing and a curse that I want to do more and need to not overdo it, which I have a tendency to do.
I’m hoping to make a trip to Wisconsin in the early part of summer and of course would love to connect with many of you. I’ll share plans once they are made.
Be well my friends. Get out there and live every day as if it were your last.
Onward!
Toulouse is officially a lap cat as this is a rare sighting with GlenLast Sunday was hard and Glen grabbed some flowers to life my spiritsMy dearest and longest friend Sara made time to stop on her cross country trip rescuing some pupsInfusion #5 with a great view of the mountainsGlen and Ev at the Engineering Expo Open HouseThe tough look of success at dance comp
Hello friends and family. We are well into March and you, like us, are experiencing the crazy weather that happens when Mother Nature is trying to change seasons. After a week of 60 degree temperatures, last week we got close to 17” of snow at our house and snow days from school (even the University closed for a day).
The view from our bedroom window just after the snow ended. We lost the little tree in the center of the photo and some of the larger bush branches by the fence.
Anyway, I’m looking at spring as a time for renewal and new beginnings. I started a new medication in February and it appears to be working based on the blood work. I’m getting IV chemo called Enhertu. It takes about 3 hours to get all the various meds dripped into me. Fortunately I’m not having much in the way of serious side effects: fatigue, some neuropathy in my hands, and gas. So, not great but overall not a big deal.
I’ve talked a lot about the tumor marker CA 27-29. It’s a way to get some data about how well a particular treatment might be working. Oncologists don’t make treatment decisions on tumor marker data alone but it’s a good proxy.
My blood is drawn and sent off to Mayo Clinic in Minnesota for analysis. The results show up in my medical portal a few days later.
A number below 38 indicates no active cancer.
When I was diagnosed in July 2019 my CA 27-29 was 122.
The number had been climbing the past year, yet my scans didn’t indicate any progression.
I peaked at almost 800.
My March number was 130! Yippee!
It’s clear from this chart of my tumor marker numbers that the cancer does not like the Enhertu chemo! Let’s hope that my scans in April confirm this.
A graph of my CA 27-29 tumor marker starting in July 2019 when I was diagnosed. Any value under the red line indicates no active cancer. I started taking Enhertu chemo right at the peak on the right side. The Enhertu seems to be knocking down the cancer activity. The numbers on the x-axis are days since diagnosis
Hi everyone. It’s mid-February, time slipped away from me. The main message to you all is hello, I’m still here 🙂 working to get back to 100% and staying positive.
Last month I had 10 days of radiation (20 rounds total). The lumbar spine and S1 showed cancer growth and the recommendation was to zap it. They zapped it all right. That radiation took me out of commission for quite some time. The radiation was from my L1 down to my S1 and from both my front to back and back to front. Anyway, it was a lot of radiation and I did not do well with it.
Nancy came out for a week when Glen was traveling and drove me back and forth. I’m super grateful for that. She also helped with so much stuff around the house I can’t begin to thank her properly.
Evelyn & Keiron came home to make potstickers and visit with Aunt NancyNancy took me to Lazy Boy to order this bad boy which should arrive in a few weeksI finally have handicap placards, mostly making my drivers very happy
The second week of radiation was hard. I became nauseous and could not keep anything down for over 24 hours. I got some extra IV fluids and switched my diet which helped some. I’m still not a fan of eating right now. The further I get from the radiation the better I’m feeling.
I turned right around from the radiation to start IV chemo. I have a new medication now (previously I was taking Xeloda oral pills). This will be every 3 weeks and an infusion so I have to go in to the cancer center.
The new medication is called Enhertu (Trastuzumab deruxtecan). The type of medication I get is based on my cancer sub-type. It turns out that this medication was just approved for my sub-type in summer 2022. Read that again. Prior to summer 2022 this medication would not have been an option. This is why research for new treatments is so critically important. Since I have been diagnosed there are at least 3 new medications approved to treat metastatic breast cancer. Please continue to spread the word about the importance of research for MBC.
Dance competition season has begun and Glen was taking Maddy to Colorado Springs for the weekend for dance. We felt like it would not be a good idea to have me stay home alone after this infusion. Ann came out and took me to my first infusion and then stayed through the weekend. Fortunately, I did not have much in the way of side effects – just fatigue. So, Ann and I had a lovely visit. She also helped with finishing up some errands and doing some shopping. We are grateful for her taking the time to come (even if all we did was work and sleep!).
Ann came with me to my first IV chemo infusionMy mom knows how to make me smileCompetition season! This is the “tough” look of me with the champ.
So, today I’m feeling “ok”. I don’t have to take any medication regularly. I do have a fentanyl patch for pain. I’m mainly trying to get my right hip back in shape. The good news there is that both my physical therapist and acupuncturist think the problem is a very tight hip flexor (not cancer). If that really is the case then hopefully I’ll be walking better soon.
I’m super appreciative of my neighbors who have driven me to appointments, ran to the pharmacy for prescription pick ups, brought food or coffee, and sent cards. It all means a lot to me and my family. We appreciate you.
Tomorrow I’ll be watching the big game 🏈 (hopefully feeling well enough to attend a watch party). Of course my beloved Packers are not in the running, the commercials should at least be entertaining.
Be well, be kind and get out there and move as best you can. Sending love to you all in this Valentine’s month and beyond.
Life As I Know It 