1. Wake up super early to be ready for the arrival of the construction crew.

2. Go to make coffee and discover the coffee maker is broken.

3. Text all coffee-loving friends about my tragedy.

4. Meet with crew to discuss changes to the plans due to its-a-really-really-old-house-so-lots-of-surprises.

5. Drive 35 miles to shop for different bathroom fixtures needed due to changes. See previous item for reason. (Bonus: lots of coffee shops in this city)

6. Get back home and realize I forgot something. Thank goodness for online ordering and my utterly amazing contractor who is willing to pick everything up and make all the returns.

7. Started feeling light-headed mid-afternoon and realized that ingesting something besides coffee would be helpful. (It was.)

8. Cleaned floors thanks to demo crew (some) and dogs (mostly).

9. Role play as an etymologist to identify a photo of a bug sent to me. Feel slightly scientific.

10. Receive call from my neurologist office that health insurance has approved all the pre-op scans to map the brain surgery, but not the brain surgery. My neurologist has a peer-to-peer meeting next week to plead my case to the pencil-pushers.

11. Rant and rave about my opinion of health insurance to anyone within ear shot. Have a good cry. Ask God if it is a sin to wish them all dead, since that is what they wish for me. ( I know, God. I’m still just ranting a little here.)

12. Learn that shower walls ordered on 3/28 and due to arrive 4/10 (yep – today) won’t ship until 4/25 due to “unusually high sales volume.” This means my bathroom will not be done before my surgery, if there even is a surgery. See previous 2 items for my snarkiness. Looks like I will be sharing a bathroom with the guys a bit longer than expected.

13. Evening telephone chat with my contractor about a few more questions and a reminder that they will arrive at 7:30 am tomorrow.

14, Set alarm on my phone to remember to text Dave my coffee order so he can get it on the way home from the overnight shift.

15. Madi inspects the day’s work. All electrical lines run today and light/heat/exhaust installed. Also some behind- the-scenes plumbing done. Refer again to item #4. She found a roll of electrical tape left behind. Fun! She also found a pile of lumber outside and showed me how quickly she could relocate that pile when I left her outside too long. My contractor does not have a Madi. He will learn what that means on this job.

I ended up driving myself to treatment 81 today. Driving TO is never the issue; I just do not enjoy driving FROM. It is a gorgeous day and I was happy to be driving in the opposite direction of the remaining eclipse traffic. Construction season is upon us and I learned the hard way the areas to avoid. Hopefully the drive home will be a bit quicker.

Since I left home my contractor has demoed the upstairs bathroom. No turning back now!

On March 25 I had a partially calcified cyst removed from between 2 lower spine joints. I’ve experienced many medical procedures now, but this one was not pleasant. The cyst was removed and sent to pathology along with a bone biopsy from those 2 vertebrae. I was told it would take some time before I would know it was success. I can definitely say it has lessened my back pain to an extraordinary extent AND everything was benign (non-cancerous). The cyst will grow back but we don’t know how fast. I hope it takes a long time.

In April I will make several trips to St Louis for medical appointments. On Tuesday, April 9 I will have Treatment #81. The following Tuesday, April 16, will be a long day of pre-op testing which includes another brain MRI. My brain surgery is scheduled for Friday, April 26. I have treatment #82 on Tuesday. April 30. Cancer is relentless but I’m keeping my head above water.

Problems within my family continue to cause more stress than cancer. There is no waiting for the other shoe to drop – those suckers are falling like rain. ☔️

I’m working to put some living in each day, although I miss a few here and there, My youngest and I have had some great Saturdays exploring farmers markets and vintage clothing events. I had dinner with two of my besties this week. I’ve scheduled weekly massages (along with infrared sauna wraps) weekly with my friend, Lindsay. A remodeling project on our 155-year-old farmhouse begins tomorrow and I am so exited to see the finished product. I’m meeting another bestie for a long overdue girls weekend in a few days and we will laugh so hard so much that it will hurt – goals!

I guess there really is a rainbow hanging over my head.

The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.  Deuteronomy 31:8

The hits keep coming and it shouldn’t surprise me given that I have Metastatic Breast Cancer, yet they still do. I have been through difficult times in my life. I am going through difficulties now and I am heading at an accelerated rate toward more difficult times. It is heavy; in between all the joy and love and laughter and fun it is really, really heavy. The emotional highs and lows I experience every day are utterly exhausting. At night, as I am reflecting on a particularly good day, I will suddenly break down, sobbing , wishing this cancer would disappear.

Dave and I will make quite a few trips to Barnes in April. We were there so much in March. I was hoping for a respite. I will have treatments 81 and 82 during April. I will spend another day meeting with anesthesia, getting pre-surgical lab work and getting a head CT and another brain MRI so my neurologist can map out the surgery. My surgery is scheduled for April 26, pending insurance approval and I will spend at least one day in the hospital. Recovery will take several weeks.

My parents were part of The Silent Generation. They were children during The Great Depression and World War II. They also both had at least one grandparent who was an immigrant. The Silent Generation worked hard and kept quiet; there was never any discussion of feelings. Children were to be seen but not heard. Emotions were something to be avoided at all costs. A positive mindset was highly valued. My house growing up was filled with books and newsletters about The Power of Positive Thinking. There is nothing wrong with that unless you are using that as an excuse to avoid dealing with emotions, and many people I loved refused to think or speak about emotions. I believe that is a ticking time bomb. 

I tend to withdraw from the world when the waves are crashing around me. I spent years thinking this was a weakness of mine – that I could not handle life as well as I should. Only in the past year have I learned to give myself grace. A recent post on www.tinybuddha.com reads:

Animals in the wild instinctively seek out quiet and safe places to rest when they are wounded and hurt. They stay there until they regain their strength, without feeling guilty or trying to push through the pain. Humans can learn a lot from nature’s wisdom by prioritizing rest, unapologetically, whenever they’re hurt, injured or unwell.

A poem by LE Bowman reads: 

Sometimes we need the protection

The armor. The walls.

Not all fortresses are prisons.

Some are cocoons.

I will be spending much time this spring resting and healing here on the farm. I strive to live each and every day I am afforded. I find refuge knowing that God goes behind, with, and before me. I am not alone and neither are you. Whatever your difficulties are – God is walking your journey right along with you, just as God is doing for me. God does not need you to think positively. That is the beauty of God’s wild and crazy love for us, without stipulations.

When the Tumor Board at Barnes/Wash U, consisting of all their very best oncologists and neurologists, review my entire medical history and all my scans on large screens and determine I need brain surgery to remove the lesion in my brain, but pencil-pushers at my health insurance company, who do not know me or my history, are going to deny at first and make my health care providers jump through all the hoops to remove this thing that is steadily growing in my brain, I feel defeated. 

I can choose the best medical team I can find and, still, my life expectancy depends on my health insurance company. 

I hope they all watch someone they love die a slow, painful death, as they fight health insurance to their grave. 

I’m writing this on the Amtrak train heading to Bloomington, IL. Dave and Madi will be waiting to take me the last 40 miles home via truck. (Madi and I both love truck rides.)

Scans ended up being fine but there was some initial concern and confusion due to how the radiologist wrote the summary. My oncologist made calls to make sure all was unchanged.

Next Monday (3/25) they will attempt to aspirate the cyst on my lower spine. There is a 50% chance it will work and I really really hope it does because if it doesn’t they have to remove it via surgery.

I have a telephone consult with my brain neurologist next Wednesday and brain surgery will be scheduled after that call. I had hoped to attend a metastatic breast cancer conference in April in Philadelphia but that will have to wait until next year. The Brain Tumor Nurse Navigator called me today with more information. I won’t be able to drive for a few weeks or lift anything over 10 pounds. She said I will be exhausted for 5-6 weeks and just want to be a couch potato. I hope I can take that opportunity to shorten my stack of books to be read.

I appreciate your prayers. Please include Dave and our three children.

It’s almost 6:00 pm and I’m still in the chemo pod. I’m on my last bag so I should be done by 7:00. This is my 80th treatment. It is hard to believe. Now on to the next 80.

I’m packing for an overnight stay in St Louis. My Tuesday begins with a port access, then injection of dye for the whole body bone scan, then a chest/ab/pelvic CT with contrast dye, then the actual bone scan, followed by an appointment with my oncologist and, finally, treatment 80. It will be a long day. Dave will take me down and stay through my oncology appointment and then he will head back home to work the night shift. I will stay for treatment and then shuffle across the skywalk to the attached hotel for, hopefully, many hours of uninterrupted sleep. I will take the train home Wednesday afternoon.

My bag is stuffed with so many presents it looks like I’m headed to a family Christmas. I am blessed with an amazing oncologist and her staff. They are always available for any questions that come up in between appointments and take their time with me. Their track record for keeping me alive is also pretty good! The nurses in the chemo pod are so skilled in their job along with the ability to keep the mood light-hearted. I am truly blessed to receive my care at Barnes.

It has been 4 years and 8 months since I was diagnosed with Metastatic Breast Cancer. Staying alive is my biggest task now and that involves numerous trips to Barnes Hospital/Washington University, a 3 hour and 30 min drive from home.

Some of my time fillers include:

79 treatments

3 gamma knife procedures

5 rounds of radiation to my adrenal gland

1 round of radiation to my shoulder

2 thoracentesis procedures to remover fluid from my lungs

1 breast MRI

3 complete spine MRIs

9 heart MRIs

7 echocardiograms

13 brain MRIs

11 whole body bone scans

16 chest/ab/pelvic CT scans

These numbers will go up in the next two weeks. (It’s a wonder I don’t glow in the dark from all the scans. )

Dave and I will make 4 trips to St Louis in 5 weeks. I am so grateful to have a life partner who holds steadfast to the “in sickness and in health” part of our wedding vows. I would not still be here without his support.

The brain MRI on Tuesday showed that the spot is still there and growing slowly. Once again my case is going to the Tumor Board for input. I will hear their assessment next week. Whatever it is, it will have to be removed eventually. The question is whether to do it now or continue to wait.

The CT scan in October showed something on my lower spine. I opted to not investigate it further at that time. I cannot ignore the pain any longer. An MRI shows that it is a benign cyst that is causing severe stenosis and impinging on the nerve root. We already knew there were metastatic lesions the entire length of my spine. This cyst is causing me a great deal of additional pain along with weakness in my right leg. My spine neurologist called me this morning to tell me that I am a candidate for needle aspiration. This will be performed by a radiologist using CT scan guidance. If this is successful, I will not need surgery, so I really really hope it is successful.

In less than 2 weeks I will have my neck-down scans and receive treatment 80. We will be making many trips to St Louis in the next few months and appreciate your prayers.