2019-2021 (A little bit of background info.):
"Is something wrong with me? Am I cursed?" I asked my mom's best friend, Sue, while we sat at the end of my long driveway on granite boulders while firemen hauled hoses and worked to put out the fire engulfing the garage and scorching centuries-old oak trees. Flames soared above our home and loud popping sounds echoed in the valley. Billows of thick black smoke were seen for miles. Crowds gathered from nearby homes and my neighbors rushed to help get the animals and items from the house. I sat barefoot and shook with my people around me. These people rushed across town when I needed them. Sue said there was nothing wrong with me and I am not cursed. I believe Sue so I let those thoughts go.
In the past three and half years, I became a widow with three teenagers (May of 2019), rebuilt half the home after a flood (August 2019 flood, December 2019 construction finished), and rebuilt the other half of the home after a fire (August of 2020 fire, June 2021 construction finished.)
I have had family and friends (I love you all so much!!!) with me EVERY step of the way. I have not felt empty since the early days. Oh, I have my moments but my pity parties are short and I work really hard to not sink into a deep hole.
My sister has helped me plan and rebuild my home (twice now), my parents handled contractors while I was at work (again twice now), and so many friends brought thoughtful gifts and just shook their heads with me. Grief is complicated and other challenges sure don't help.
2022:
In June 2022, just five days before the end of the school year and a week and a half before my son's wedding, I got the news I'd be changing classrooms. Sweet parents and students helped clean out the classroom I was moving to, pack my current classroom, and move my supplies. I was overwhelmed with the last-minute classroom change and being the only parent for my son at his wedding. The parents of my students swooped in to help me out while the students were amazing. I love being a teacher and the parents and students are the BEST. My mom and sister helped me decorate my new classroom and former students came during the summer to help set things up. I love my people (which mostly includes my current and former students and their families.)
Our oldest son married a FABULOUS girl a few days after the end of the school year and it was a true celebration.
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| Kirsten and Tyler's wedding day! Our son, Cole, is a cardboard cutout because he is on a mission in Texas. We then had a fiesta at our home to celebrate some more. Of course, my sister and my mom jumped in to help plan every perfect detail. Friends helped with set up and clean up making it a breeze. (Some friends even took all of the trash afterward!) The best part was I got a daughter-in-law that is a perfect fit. Talk about a HUGE blessing (thank you, Shawn!)  |
August 2022:
Now, I'm ready to tell you about August 2022. In the summer, we teachers go to the dentist and get all of our yearly medical stuff done so I was working on this. My foot had hurt for a few months so I went to the doctor and had X-rays etc. I thought he'd tell me to wear old lady shoes and give me a magic shot. Turns out he sent me to an out-of-network specialist at UCSD. My issues were... unique. A bone in my foot was eroding away. The same day I got the news about my foot issues being serious, I had a mammogram.Many appointments, tests, some surgery, and biopsies later I learned I have three staph infections in my foot bone and breast cancer. I was on IV antibiotics through a PICC line for six weeks and had a home health nurse for my foot and have often had what I call "foot volcanoes." Yep, gross.
My oncologist had me stop working. I am the only parent with three teenage/ young adult children and I need to... stop working for now??? Ok, that was hard to swallow. I love my job too. It was so hard to hear and I balled while talking to my oncologist - not about the cancer but about the changes to my life.
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| I organized my IV supplies in pretty dishes on the table so they were pretty and easy to access. They have lids and they were a nice centerpiece. I gave myself four injections every eight hours. I had to lie down because I was overwhelmed when the nurse showed me what I had to do each time. After a while, it was no big deal. |
After more tests, I was shocked to hear I am not a stage one breast cancer patient. I have de novo MBC which is metastatic breast cancer. De novo which means you start at stage 4. Wham! This was crazy to me. The cancer in my breast was less than one cm! I have a mammogram every year. But the cancer was already spread throughout my bones. My ribs, back, pelvis, femurs.... all covered in cancer. This is not typical. It was hard news to hear and even harder to believe. My grandma had breast cancer that spread to her bones in the 1980s and it didn't go well but things have changed drastically.
I am in my 40's still. I feel good. I had surgery on my foot in Sept. and another surgery in December. My foot bone is still infected and I am still on several medications and may have more surgery this month.
I have been doing chemo for a while now. My chemo port has had some complications and caused a blood clot in my neck. (That was not fun to go straight from chemo to the emergency room on a Tuesday in November.) If there is a complication, I seem to find it. My doctors and I are friends now. Buddies. Who knows, we might go to lunch someday.
I will always be going to my oncologist. My cancer will always need to be treated with chemo at least twice a month. She is a tiger (I love tigers and all cat species!) working to get me treatment when my insurance denies my chemo or blood clot meds. She is awesome. The bone infection in my foot has complicated things. Bone infections are boogers.
I will always have chemo. Always. My treatment has a start but there isn't an end. (Well, not like how when others get to finish a round of chemo, my round of chemo doesn't end.)
Here is a great article from breastcancer.org called What I Wish My Friends Knew: Insights From Our Stage IV Community Forum. The only part that is different for me is the section My Partner Needs Support Too. Well, he's dead. (I'm feeling blunt right now.) But my kids and parents do need the support. They have been through the wringer. My mom has been with me to everything. We are talking about three to five appointments a week all over the county, overnights in the hospital, and spending the night at my house when I have surgery. (I've had a lot of surgery in the last few months.)
Let's talk about the upside. I really feel hopeful. I'm not joking here.
- MBC is different now. They have treatments that are amazing and targets the cancer. My chemo is called immunotherapy and includes 5 drugs.
- I have a favorite spot at chemo and a backup spot and I have noise-canceling headphones now because all of the people talking drive me crazy and I'm there for hours and hours.
- The side effects aren't too bad. I get tired and my stomach hurts but it is manageable and I preload with meds at home and at chemo. I won't lose my hair at this time.
- My port is this thing between my neck and shoulder that they poke into for chemo and there isn't anything open. I can go swimming (when my foot stops being a foot volcano.)
- There are integrative therapies that oncologists help you access.
- I have a team of great doctors and nurses. I see a lot of doctors right now. I like to think I am popular. I see an orthopedic surgeon/ oncologist, radiation oncologist, infectious disease doctor, and oncologist right now.
- I can pay all of my bills. I am hoping to be back at work in early 2023 (no specifics yet and I need some issues to clear up.) Cancer treatment includes a lot of out-of-pocket expenses and copays. I feel so grateful I can cover this. In the beginning, this was a huge concern but I'm feeling okay about it now.
- I feel loved and cared for.
- My students from last year worked to create 1,000 paper cranes and strung them in beautiful garlands. (Actually, 1,100 cranes! So I should be extra good!)
- My kids are doing well.
- I am learning to not sweat the medium-sized stuff (small stuff wasn't a concern already.) I'm not going to cry very long when insurance denies important treatment. I'll just think, "Oh this again" and get working on it.
- I have worked really hard on my stress level and being okay with the unknown.
Long-term Disability - A Must-Have for Teachers:
Teachers... be sure to have separate disability insurance you pay for. Your district probably has a company that comes in the fall and offers disability. Sign up. Learn about what is offered.
With long-term disability, the substitute teacher pay is taken from OUR paycheck. We get ten sick days a year with pay. They can accrue so if you have leftover days from previous years you can use those as well. Once the sick days are gone, you move to differential pay which subtracts sub-pay from your paycheck. Teachers aren't eligible for state disability so be SURE you have a separate disability policy. A disability policy will help with this discrepancy in pay and is a must-have. Cancer treatment is very expensive and copays add up quickly so having a reduced salary can be an added stress.
I was very stressed about my diagnosis and what it meant for me financially. I am not one of the Real Housewives so I need to work and I especially need medical insurance. Once I realized I could pay my bills while being on long-term disability, I could focus on my health and I felt less emotionally paralyzed. Being a widow and not having my husband handle the added financial burden was a stressor among stressors. Disability insurance is a must.
***Update January 15, 2023
Waiting for scan results is something I've worked on getting used to, but it is tough. It is this space where you steel yourself for whatever difficult news might come but try to remain hopeful. Deep breaths, distractions, and sometimes serious worry about "what if?"
I prepared to meet my oncologist the afternoon after sending Addy on the plane back to college. It was the day after what would've been Shawn's 50th birthday. Good news? Difficult news? Holding steady? A bit of improvement was my biggest hope. But, I received AMAZING news this week from my oncologist as she reviewed my scan. The chemo is working its magic! I have no active mets (cancer term for metastases)! The two doctors I met with this week were stunned. My scans were compared and viewed multiple times because the improvement is so drastic. I will always be on chemo twice a month and have continued treatment but it is working! I had chemo on Friday and the NP brought me a copy of the scan results to be sure I had the good news in writing.
There is was in black and white. Thank you for the continued prayers and kindness. I am grateful.