We left the farm and 4:30 this morning for my 8:30 appointment at Siteman Cancer Center.
Dave and Madi played at Forest Park just down the road from Barnes. It is a gorgeous day in St Louis’s
The beauty of early appointments is driving toward home by 10:30 am. Madi Moo might sleep the whole drive.
After a day of rest, we come back down here on Thursday to meet with my cardiac oncologist. (Madi will stay home for that trip.) We are eager to find out what the plans are for my damaged heart.
This resonates with me. It begins to describe how I feel, almost 7 years into MBC. I almost feel healthier, happier and more whole than I did before cancer, but that is not quite accurate. Those particular words are not exactly right.
Healthier: This cannot be within a body with incurable stage 4 cancer, a body that is physically and mentally limited, a body plagued with digestive problems, fatigue and pain. Perhaps I mean that I am comfortable with this body I have. I like it. I may even love it. I marvel at its abilities, even when those are much more limited than before cancer. People my age seem so concerned about aging and I see aging as a wonderful privilege.
Happier: How can I be happier when there is gut-wrenching fear of dying young, before my kids are ready and without my fulfilling my biggest wish in life – to grow old alongside my husband? Surely I am not happier. Perhaps I mean more at peace, more comfortable in my own skin, more confident to practice self- compassion, much better at time management, much more skilled at setting priorities with my own time.
More Whole: How can this very broken body be more whole? Perhaps I mean that I know myself so much better than I did before cancer. I have experienced much trauma related to my cancer journey – chemotherapy, radiation, surgeries and so many scans. I had to quit working, throwing us into financial insecurity and uncertainty. Outside of cancer there have been so many problems. Surviving all this has made me stronger, like bones knitted together after a fracture. Knitting together fractured relationships makes them, in my opinion, stronger than they were before they broke – definitely built on a more solid foundation.
I started this cancer journey with the scary realization that I am in control of nothing – hence the title of the whole blog, “I am NOT in Control.” I have developed a closer relationship with God. I talk to God so much in the normal course of a day. I swear at God. What the eff, God? Seriously, God? God, give me the words. God help me put on my big-girl panties today. God, I just cannot. There is too much pain, anxiety and fear to say, smugly, that I am happier and healthier than I was 7 years ago. I see my cancer in the faces of my husband and our three children. I saw it in my mom. But, to use the selection from this poem, I am now learning to be both lighthouse and sinking ship, the beacon and the wreckage.
Yesterday started early but I was home in bed by 5 which was heavenly and slept better than I had in many days. I had a support group on zoom this morning. I decided to try walking at the gym and was able to go 20 min at a pace slower than usual. I felt smug. So I decided to walk Madi this evening. It was not a good choice to walk a 90 pound dog the day after treatment. A dog started running toward her and she took the bait. I was not prepared and ended up face planting in the ditch. She came running back immediately after hearing me swear loudly at her and laid down beside me as though she was a caregiver and not a troublemaker. Sometimes I think she recognizes her name as, “God Dammit Madi.” I have some abrasions and I know I will be sore tomorrow, but it could have been worse. Lesson learned.
I will let this photo tell you the results of today’s brain MRI. I so appreciate all the supportive messages today.
I’ve been purposefully busy in an attempt to distract myself from thinking about the upcoming scan. We saw the opera, “Little Women,” and the play, “Radium Girls,” in the last 2 weeks. Both were at the Krannert Center for Performing Arts on the University of Illinois campus. We planted 4 new trees on the farm and cleaned up a lot of landscaping. I discovered that the rhubarb and bleeding hearts that I thought were killed last year actually came back up again. The bleeding heart was accidentally mowed down and the rhubarb fell victim to over-aggressive farm chemical spraying. They were both dear to my mom so it hurt a lot to see them go. I’ve been visiting them daily to tell them how glad I am they are back. We have a freeze warning tonight so Madi and I went around and covered several things left here by my mom
Madi turned 4 on Friday, April 17 and we celebrated with an ice cream pup cup.
Despite the freeze warning tonight, it has actually been too hot for me to handle walking outside. (I have little body temperature control due to chemo along with a nasty rash when I am exposed to the sun. Cancer – the gift that keeps on giving.) I joined a local gym so I can walk on a treadmill in a lovely climate-controlled environment.
Now I find myself alone on a cold Sunday night spiraling with scanxiety. I’ve run out of distractions.
On Tuesday (April 21) I have to be in St. Louis by 6:30 am for another brain MRI which means we will leave the farm by 2:30 am. We will meet with my radiation oncologist a few hours later for preliminary results followed by treatment 116 mid-morning. I hope to be home in bed by 5:00 pm. The scanxiety is horrendous. The last two tests have produced bad results so I wonder if the streak will continue. New brain tumors would explain the results of the CT scan. I cannot see my new cardiac oncologist until mid-May. I’m not good at waiting to hear the next steps. My brain tells me that worry does not change anything and that I want the scan to show any new tumors so they can be treated. My heart refuses to listen. I’m tired of – gestures wildly – all of this.
Eff.
On July 24, 2019 I was diagnosed with Metastatic Breast Cancer, stage 4. Only 9 months after a “clean” mammogram, I felt a lump that ended up being a large tumor that had already spread to my liver, bones and adrenal gland. Since then it has spread to my brain. I learned after my diagnosis that I have extremely dense breast tissue. I am an advocate for My Density Matters, an organization on a mission to empower women to learn their breast density and take control of their breast screening.
Come join us for a walk around the Main Quad on the University of Illinois campus. It is a short walk – just three laps. There will be speakers and information to learn more about breast health. There will also be educational resources, guest speakers, and raffle prizes. Registration is $5 and all proceeds benefit My Density Matters.
Mark your calendar and come join me for our first walk in Champaign!
Please help me share this information on your social media.
How are you?
We ask and answer this on autopilot.
FINE.
What if FINE is a lie? Can telling the truth be a lifesaver? I wish. But I have not met many people who are equipped to handle truth. Most people crumple into a big wad of awkwardness when looking into the face of truth.
FINE can be a brick wall between me and help, between me and the people who love me. But that brick wall can be a safety barrier to protect my heart from seeing the awkwardness in someone’s face who asks me how I am as a social informality and I think they want the truth. I think of Jack Nicholson”s character in the 1992 movie, “A Few Good Men.” “You can’t handle the truth.”
This is one of the reasons I blog. Those who really want to know show me by following my blog. And the people who do that do not have to ask me how I’m doing; they already know.
Small talk has its place. But maybe we should try harder with people who matter.
The results of my echocardiogram were not what we wanted. I have been referred to a cardio oncologist. Treatment for metastatic breast cancer seems to be a balancing act to find the appropriate level of poison to kill the cancer but not quite kill the patient. At least we now have a better explanation of the findings on the CT scan 3 weeks ago, but not the explanation for which we hoped. I’m home in bed listening to thunder and rain – the very best sleep environment for me.
Dave, Madi and I left the farm at 4:30 this morning. Madi and I slept during most of the drive. It is rainy and stormy at home but sunny here in St Louis. Things are moving very slowly today at Siteman Cancer Center. My chemo appointment was at 8:30 but I didn’t get my bag of poison connected until 11:00. After this I will get an echocardiogram and then I’m out of here. I get echocardiograms regularly because the drugs I am on for cancer treatment are known to cause heart damage
I have many skin issues due to cancer treatment. I have a prescription ointment to keep the hand foot syndrome controlled. I have a prescription cream to treat a rash I get on my arms during the second week of the treatment cycle. My nails are ridged and chalky. They don’t break – they just disintegrate. Last week something new popped up – a rosacea-type rash on my face I didn’t think of myself as a vain person until my entire face turned red and bumpy. Good times. My medical team and I are doing what we can to get some relief.
Dave and Madi are hanging out in Forrest Park while I’m at my appointments. Since my day is running a little long, she already wore herself out and needed another nap!
My long medical day is over and we are driving home. They had cushion in the schedule and every stop was able to work me in when I arrived. Sweet! With a couple stops along the way we should arrive home around 9 pm.
If you’ve followed this blog for a while you know the goal is for my scans to be unremarkable. That was not the outcome of the day but it is something we are going to watch for now and repeat neck-down scans in 3 months instead of 6 months and monitor symptoms. I’m not happy about it but I’m also too seasoned at this to be devastated. Today ended with treatment 114.
In 3 weeks I have treatment 115 plus an echocardiogram because my cancer treatment is known to cause heart damage. They monitor my heart closely.
I am not in control. 