Soon after my diagnosis my friend, Taryn, crocheted a bunch of hats for me. She asked what some of my favorite colors are and went to work. I’m still wearing them today, one because they are adorable and two because my hair has not grown back like “normal” hair yet. When I reach into my hat drawer and choose one, I think of Taryn. I think of all the time she put into these hats. I feel loved and supported.
Taryn has an Etsy store. It’s name is the title of this post. Check out her work.
My third gamma knife procedure is behind me. The latest brain MRI showed only one new spot. The other spot was previously treated and does not need any more. I’m staying on my first line of treatment. Neck-down scans are scheduled for Halloween. My next chemo treatment is in two-and-a-half weeks. I am anxious to get home to the farm and my pups.
Thank you for all the messages and prayers. I am surrounded by God’s love.
A friend asked me today how I was feeling. I paused and then broke out in laughter. I wouldn’t know how I’m feeling because there has been no time to focus on me or my feelings or my emotional state. The last few days have been a whirlwind of caring for my mom and figuring out how to move forward with some help for her. I’ve mentioned that I’m not good at asking for help. My life has been out of balance in the giving and receiving of help. I’ve been a caregiver most of my life. Thank goodness for my friends who have stepped up with food and messages of encouragement and a ramp for a handicapped dog (yep – my life is insane). Thank goodness for my daughter who spent time with her Gran so I could rest and also watched a couple Hallmark movies with me last night so we could laugh. Thank goodness for my sons who show up when I need them and give the very best hugs in the world. Thank goodness for Dave who, like always, manages everything at home when I need to spend time caregiving away from home. Thank goodness for my two dogs who welcome me like the prodigal son when I am able to come home for a time.
Just because life events have forced me to act as though I didn’t have a chemo treatment and 2 brain tumors discovered last week doesn’t mean I’m not feeling it. Those people close to me who see through the steel armor and see my pain and fear are my angels. Thank you for helping me carry it.
It’s been a challenging week. I had chemo on Tuesday. They found 2 brain tumors so I’m waiting to hear when gamma knife is scheduled to eliminate them (numbers 12 and 13 if you are keeping score at home). My mom had a bad fall at her home Thursday. We are looking for home help and help with her handicapped dog.
I assure you that isn’t all bad news. The new brain tumors are small and the Tumor Board at Barnes/Wash U decided I can remain on my same chemo treatment. That means I’m still on my first line of treatment and that is excellent news for cancer patients. My mom is strong and just needs a little help at home. She is utterly amazing for 87 and has lived alone for around 14 years. This fall won’t change that . On top of it all, I am blessed with a husband and 3 kids who are so helpful to me. And I come home to Indie and Madi, my labs who are my companions, buddies, besties, and nurses.
I realized I haven’t been specifically asking all of you, my prayer warriors, for specific prayers. I meet so many people who tell me they are praying for me and I am so grateful for that. Please add some for my mom. I also want to thank all of you who donated to the fund at the Bank of Gibson City that was started by my friend, Leanne, and those who donated privately. I had left some funds in for a rainy day and, well, it rained down this week. So you are all still helping me!
Through all this I can feel God’s presence so strongly. I hope you can, too.
Scanxiety is a bitch. I am generally calm, cool and collected – right up to the day before cancer scans. Then my alter ego appears and she is a hot mess. Dave and I are on the way to Barnes. I will have a brain MRI this morning (perhaps my 12th but I start to lose count). It’s been 20 months since I had brain tumors and I would like to keep that trend going. This afternoon I will have treatment.
I live my life in 3 week cycles first (treatments) followed by 3 month cycles (brain scans) followed by 4 month cycles (body scans). Time flies when you are focused on living every day.
I am so grateful for my close network who have met my alter ego, usually very very late at night. Dave quietly nudges her to try to sleep and reminds her we’ve handled everything together. Malinda and Kathy shower her with Marco Polo messages and texts. My brother reminds her that she is an FW (if you know, you know). Thankfully my alter ego will crawl back into her hole in a few hours and wait.
My treatment days begin with my port being accessed and several vials of blood being drawn for a host of blood tests. When I had treatment last week, one of my tests was highly abnormal – so high they actually drew another vial to run the test again to make sure there wasn’t an error. The result was even higher. My team decided to proceed with treatment and run the blood tests again the next week. They arranged for those tests to be done locally so I didn’t have to go back to St Louis.
Anxiety associated with cancer tests (scanxiety) is draining. I tell myself it is unproductive to worry. I try to keep myself distracted. I thought I was doing a great job of that over the weekend. Today I received a message that the new tests showed no issues so they have decided last week was a fluke. I suddenly felt like a hundred-pound weight was lifted from me.
It is a gorgeous evening and my girls and I are celebrating the fluke on the deck with extra dog treats. Live and love every day.
Yesterday I visited my podiatrist. The assistant asked about my cancer diagnosis. I shared only that it was breast cancer that had spread and was stage IV. She followed by telling me she has extremely dense breast tissue and they are currently “watching” and area to see if more needs to be done. I jumped on that with all guns blazing. I explained breast density and why it matters. I told her she is at a much higher rate of breast cancer because of it. I told her of my de novo diagnosis and my years of “not positive for cancer” mammograms. I told her that she must get a breast MRI or ultrasound as fast as she can and that insurance will cover it ( in our state, IL). I told her to get an MRI or ultrasound every six months. She left the room to make the call.
Why don’t women know this critical information about their own bodies? Why didn’t I know?
My life has been severely disordered lately – a thing a control freak despises. Last month I took my 21 year-old on a trip to Seattle. On my bucket list is a solo trip with each of my children; this was the first. It was incredible for so many reasons, but mostly because I was able to have so much time alone with him. Crossing off bucket list items is equal parts joyous and heart-breaking. I am working hard to put as much of me as I can into my kids while I am here so that they will always feel me with them when I am not.
Right before our trip someone for whom I am a caregiver had an accident but my husband and other children stepped up to help while I was gone. I returned home to a house with a puppy who wasn’t ready for her mom to be gone on a trip (again, blessings to my husband and other children for stepping up). Order was restored to life for one day and then Covid hit me – on my birthday and also the day I was supposed to receive treatment. My treatment was delayed two weeks, which terrifies me. In three years this is the only the second time treatment was delayed. The other time was a delay of two weeks due to Covid quarantine and the cancer spread to my brain the following month. We will never know if the delay caused that, but my anxiety is running through the roof these days. There is nothing I can do but wait until my next round of scans.
While recovering from Covid, our air conditioner went on life support and finally died during the hottest part of the year. It was pretty miserable here and I couldn’t go anywhere else for fear of spreading Covid. There was so much disorder created living in a ninety degree house. We avoided running anything that might add heat to the house. We have a new unit installed and I am remembering to be thankful each day for cool air and I might be caught up on laundry now.
So now, recognizing that I am not in control of my life, I am still trying to restore some order. My amazing family has declared today a re-do of my birthday. We are celebrating at my favorite restaurant. I have treatment this week and will try to put faith over fear until my next scans. I am back home with my two black labs who bring me so much joy and companionship and never tire of licking away my tears. I am a caregiver when I am able and learning to be a care receiver when it is needed. There is so much beauty in the ordinary.