The First Day of the Rest of My Life

The Last Day

Yesterday was the last day. I took my last chemotherapy pill at dinner last night. No party, no fireworks, just one last swallow and then just after I set my glass down, I got a “Wahoo!” text my from my daughter-in-law. That encouraged a few calls and words of celebration and breathing with a few family and friends. Even in this, I am supported. Thank you!

It was a big day for me. It still seems a bit surreal. Really? Am I really done? There are no more scans and biopsies scheduled. I won’t see my oncologist again until September 15^th. (for the record, my particular kind of breast cancer does not have any blood markers…so the only way to tell if there is more cancer is scans and biopsies, of which I’ve had plenty). I’m still wrapping my brain around the idea that I might get to move on. Really? Meanwhile part of me is hopeful that I might actually get to make progress on my side effects as my body detoxes from the poison we know as chemo.

The First Day

Back in the day, it was a popular saying “today is the first day of the rest of your life.” Today that saying is just true for me. I feel like I’m starting over again, praying for guidance, for health, for presence of mind and heart to live fully and deeply. It is all that matters at this moment, to live fully and deeply and show up for myself and for others, the best I know how. There is still a lot of healing to do. There is a lot of work yet to do,  a LOT of work to do but starting today, I have been the gift of another day to do it in.

I look forward to leaning more into my passions again. I look forward to being with Pete and our kids and grandkids for a week up at a cabin up north later this month. I look forward to many more quiet mornings sitting on the patio, listening to the birds sing while I sip my tea or do a sudoku or the crossword puzzle. I love waking up early for a quiet morning! I look forward to singing again more, now that we can, with all the lovely voices I’ve come to adore in the groups I sing with. I look forward to connecting with friends, as we are able and enjoying those magical moments when we just know that we are connected, that we are one, that this world is one with us. I look forward to more deep conversations about love and God with book groups and in spiritual direction and with family/friends.

Today is the first day of the rest of my life. I’m going to start by giving thanks and listening for my heart. I’m going to start by saying Thank you! And then having a few tears to honor this moment when I get to move on.

Peace be with you dear friends! Love be with you dear family!

Love, Jules

Thanks to Rena Lindgren for the photo of me walking through the stone threshold from our trip in 2015 to Pipestone National Monument.

CANCER UPDATE: Scans and good news and daisies!

Hi sweeties, my dear ones,

I have had trouble writing a health update of late. As soon as I start to write, I get distracted and by the time I get back, I'm in a whole different place and need to start over. So I'm going to try in one sitting to give you an update as short as possible. (and that did not happen--it is now several days later already.)

Here is a "quick" summary of the last month or so.

April 26--after going to the ER I was diagnosed with cellulitis and put on 10 days of antibiotics. My main symptom was a swollen breast...with some pain but no fever or sickness. Initially the fluid and swelling in the breast went down.

May 7--In June of 2020, when I was being diagnosed with breast cancer they also saw a couple of nodules on my lung. So May 7th, I had a follow up Chest CT Scan. The nodules were "stable" so that was good but the radiologist some somthing "else" on my thoracic spine. They wondered if it might be cancer so they scheduled an MRI.

Tuesday, May 18--I was awakened at 5am with pain under my left arm and some in my breast. The fluid and swelling had gone up again. So I called my oncology nurse for help. She did 2 things--upgraded my virtual appointment to an in person appointment with my nurse practitioner and she referred me to a lymphedema therapist. I was so grateful I had called.

Wednesday, May 19--I had my blood levels checked. All were good. No indication there of any infection. All good news!

Thursday, May 20--I saw the nurse practiioner. After examing me, he said quite empahtically "I am quite sure this all from your surgery and radiation. sometimes people get the fluid even 3 years later." but just to be sure, he set me up with a diagnostic mammogram. I went home encouraged that someone (besides me) had examined me and concluded that my experience was within the normal range of experience. This was good news to me! 

Friday May 21--8:30 am. I had the MRI on my spine....they were looking for what they thought might be a cancer spot that had showed up in the previous CT scan. They found no evidence of cancer, just an old injury which made sense since I had fallen on the steps last july and landed on my tail bone. So nothing new to worry about there. GOOD NEWS!

Friday, May 21--1:15 pm I had my initial session with the lymphedema therapist. she gave me massage on my lymph nodes and exericises to do to help my lymph nodes keep working better.  I think it is helping some. I'm not good at regular exercise but I'm motivated. It is good news that I have something to do to help myself that isn't taking more drugs. YAY!

Massage: In addition, I am having a weekly massage with Janet Midthun. Cooincidentally she also knows how to do the lymphedema work and I think that helps me too. So grateful for Janet and her availability to me! more good news.

Chiropractor: I also see the chiropractor every 2 weeks to keep my spine aligned and neck too.

THURSDAY, MAY 27TH--AN ANNIVERSARY--last year on this day I found a lump in my breast, just two days after George Flloyd's murder. What a year! I'm happy to still be in it! still here!

May 27--  I had my diagnositc mammogram. It was 98% possitive. the radialogist was 98% sure that the little spot they did find was nothing but to be sure he scheduled me for a needle biopsy. Sigh! Another test and more looking for cancer.

June 1st--11am, I had my needle biopsy. The nurses and the radiologist were super nice to me and it only took a half hour! In spite of the test, this was a good day for me! I was so grateful for the people who keep doing this work and do it well.

June 2nd--2 pm, a nurse at the Breast Center called to tell me that my test results were in. NO CANCER! So I asked her about the fluid in my breast and she said it might take months for it to go away. Okay...good to have that clarified again. While I was still talking to her, Goran, the nurse practioner called to tell me the good news too. I got a kick out of how they both called me immediately after getting the report. Goran, said all that showed was dense breast tissue with some bits of calcification. He said I should keep doing the lymphedema and massage and that both of those things would help. GOOD NEWS! I shed some tears of gratitude and relief. Nothing new to worry about! 

Xeloda....June 25 is my last scheduled dose of this chemotherapy pill. Hopefully my oncologist doesn't have anything else to give me. My body and my heart are so ready to be done with chemo. Whew!

Daisies and songs...haha..this is basically an excuse to share my daisies with you. One of my deep joys in life has been daisies, their simplicity and their stunning beauty. Daisies are good news too, along with the fact that I had my lovely Morningstar Singers over on Tuesday night for our first in-person singing in over a year! Good news indeed!

It's been a long taxing year. Please keep praying that my neuropathy heals. I am ready to get my life back, even if it is a different life than before.

Thank you all for your deep support of me over this last year, for listening to me ramble, for allowing me to not always be the cancer girl, for loving me as I am.

I am so grateful and wouldn't have made it through the year without you.

Love you big,

You are good news!

Jules

LAMENTING A YEAR

PREFACE: A little history... March 13, 2020 Governor Walz shut down Minnesota in precaution of the spread of COVID-19. March 12, 2020, we cancelled our annual Dragonfly Project Celebration Event. A week before I had set up my 2nd photo gallery show. That too was shut down. May 27, 2020, two days after George Floyd was killed before our eyes, I found a lump in my breast and have been treating for breast cancer ever since. Now it is a year later. And this is my lament...

MY LAMENT A YEAR LATER---APRIL 27, 2020

Okay, so I get breast cancer.
Why should I be exempt?
I can think of no reason why.
It is not the worst but still it is serious.
And it’s still not fair.
My whole life is about cancer now.
CANCER RULES

But that’s not enough
George Floyd is murdered before our eyes
In a very violent way with no regret from the police officer who killed him.
A few days later violent crowds burned the city
VIOLENCE RULES

But that’s not enough
A virus, a teeny, tiny little bug
Takes over the world with the biggest pandemic ever

And it kills millions
COVID RULES

But that’s not enough
The pandemic separation is a pandemic itself

It separates us from our friends,
From our hopes and dreams
From our practices of community
From our lives, from our work
SEPARATION RULES

But that’s not enough
Our government, our democracy
Is barely surviving, living on Fear
Afraid of losing
Afraid of control, afraid of no control
Afraid of each other
Afraid of ourselves and the darkness
FEAR RULES

But that’s not enough
Black men keep getting murdered
Police keep getting blamed for what belongs to everyone
Always we are blaming the other

Elders are dying alone

Half a million have died of COVID
Mother’s keep weeping in their sleep for lost children
Father’s keep gnashing their teeth in the night for lost opportunities
Brothers and sisters stare out into the empty sky looking for a star to wish on
Friends continue to be far away, each of us lost in our own loss
GRIEF RULES

But that’s not enough
I had to lose my feet and hands to neuropathy
Hand/foot syndrome
Numbness, and pain
And now cellulitis, swelling and pain
Really? Wasn’t it enough already?
CANCER STILL RULES even after it is gone

This is my lament
CANCER RULES
VIOLENCE RULES
COVID RULES
SEPARATION RULES
FEAR RULES
GRIEF RULES
 
How long or Lord how long?
How long?
How long until we let go of these lies?
How long until we see that it is LOVE, LOVE THAT PREVAILS?
That we begin with kindness and find light and love?
How long until we see through the mess to you?

How long until we see the SACRED in everything and everyone and are no longer SCARED?

~Jules Bonde, April 27, 2021

CANCER TREATMENT PHASE #4: PREVENTION plus some rambling about life

So--this package came in the mail on Friday, all the way from Memphis, TN. why Memphis? Because only certain pharmacies are allowed to make the drug. And what is in this ominous looking package? Xeloda. It is a chemotherapy in pill form. Xeloda is recommended as a follow up to help prevent recurrence in the particular kind of breast cancer I had which was invasive ductal carcinoma, triple negative. I will take it daily for 2 weeks then get a week off for 6 cycles over the course of 18 weeks. I began taking them Saturday, February 27th. If I manage to take it to the end of all the cycles, June 25th will be my last dose. I believe it is a good choice but I am nervous about the outcome, meaning the side effects. Although my doctor assures me this is "a lot milder" than the chemotherapy i had last year, there is a long list of possible side effects including numb feet which I already have. I truly don't want to have more taken away from my feet. So this is mainly a plea for more prayers of healing and protection. in particular, I pray for healing of my numb feet and fingertips. It can also deplete my immune system a bit and I am wondering if I will ever be able to get a COVID vaccine. I'm feeling rather tender as i enter this new phase of treatment. 

Meantime my energy, for the moment, has returned. I have been walking almost daily with Pete. Yesterday we walked down by the Mississippi and enjoyed watching the ice floating down. We've been busily and happily working on hosting the 19th Annual Dragonfly Celebration via Zoom from our house (March 13th). So we're stretching our brains and creativity to make that happen. There always seems to be something to do. I am grateful to have good work to do from home during this time, including helping teach others to be spiritual directors through distance learning via Tending the Holy program at Christos Center for Spiritual Formation. All of it good work. I hope my energy remains and that I don't have to go back to laying on the couch during this new phase. So prayers for energy as well.

We are not seeing our children and grandchildren as much now. Parts of Jacob's and Karl's families have returned to in-person school. It's an exciting and yet vulnerable time for them and for us. We continue to be very careful with each other. Luke is not as vulnerable but added an extra job, teaching a small group of high school students computer programming online. So everyone's life is full. even so we are grateful for the contact and connections we have with them. Solveig, in kindgergarten called us after school 4 times last week on Google Duo for some very animated video chatting. And we met Karl's kids outside a couple of times for some playing in the snow. This is life in the time of the pandemic. Even, Sophie, age 2/12, is used to wearing a mask.

I can't end without giving thanks again to all of you, for your support, your friendship, your prayers/wishes/songs. I pray that in your own times of suffering, you will know there is this deep treasure of friendship and love to lean on, if we just allow ourselves to do it.

sending you love,

Jules

End of Phase 3--BREATHING AND COMPASSION IN TREATMENT

 

The Sunrise of our New Life? I hope so.

February 3, 2021--my last day of radiation treatments

Today is my last day out of 20 radiation treatments! Wahoo! I can't believe it!

Four weeks of radiation has been way, way easier to handle than 5 months of chemotherapy or even surgery. Evenso, I've had to drive to the hospital every weekday for three weeks and get zapped. About a week ago I started getting the expected burn on my skin and an itchy rash. So it hasn't been without some discomfort and inconvenience. But it also hasn't been all bad.

During my visits, I met a lovely man from Zimbabwe. What a sweet human he is! Each day he greets everyone in the office as he walks in the door and asks how they are. I am glad to have crossed his path, however briefly. And every person who works on me at radiology treats me with kindness and dignity and affirmation. I am grateful for the peole who work there.

During my drives to and from, I've been learning more about country and our world as I listen to NPR radio shows. I've also been listening to a lovely book, "An Altar in the World: A Geography of Faith" by Barbara Brown Taylor. This books focuses on all the ways in which we encounter God as we walk through our lives.

Alongside this time, I've been participating in a spiritual practices group via Zoom.  This group is sponsored by our church but not exclusive to members. Since October, four of us have been taking turns teaching a new prayer practice each month. Last month we learned about focusing on compassion. My favorite part was the practice of breathing in the pain, holding it for a moment and then breathing it out and releasing it. The idea is to focus on someone who needs compassion and breathing in their pain and then releasing it. Cooincidentally, part of my radiationt treatments is to "take a deep breath and hold" while the radiation is administered. "Now you can breath," the therapist says when each position of radiation is accomplished. Due to my prayer focus on compassion, I've been using my daily radiation treatments as a time to prayer for healing, to breathe in the illness and breath it out, making space for the healing. I've been praying for myself and for others. And maybe I'm encountering God in the radiology therapy machine. Hmmm. 

I never expected for this to happen, but it did. And as a result, I feel like my energy level has been good. Though I'm glad today is the end of it, I'm not worn out from it. I feel reassured and more confident that healing will come. Compassion is the beginning of healing right now for me and for my friends and neighbors and even those I disagree with. Perhaps as we make more room for compassion, we make more room for healing. I hope this is so.

Even as I end my treatments I am going to continue this practice: "Take a deep breath, breathe in the pain and hold it for a moment" then "Breathe out, releasing it all." 

Will this be the end? I don't think so. But I do hope it is the beginning of a stronger healing time. I hope this for all of us. I hope this is the sunrise of our our new life!

Finding Hope in the Trees during Challenging Times

January 9, 2021

Deep breath! What a week! Earlier this week, I went to radiology therapy for my pre-treatment dry run. At the exact same time, a group of insurrectionists gathered and with encouragement from our president and others, stormed the capitol. In addition, I have been getting messages from friends who have had major health issues or family deaths without a chance to gather for funerals. So many reasons to be discouraged. Enough said!

The next day I had my first of 20 radiation treatments to discourage my breast cancer from coming back. The treatments only take 10 minutes or so but it is a 15 to 20 minute drive each way. The treatments are every weekday until I have finished them all. It is not lost on me that there is a cancer of sorts in our culture too. I think we all feel it. Whether we know how to name it or how to cure it, we feel it in our bones or the shortness of our breath. It's been there a long time and only now got serious and big enough for us to really know that we need healing. We need to stop and allow healing to happen. 

One of the things that has worked for me in the past and is especially helpful to me this past ten months has been going for a daily walk. Because I have been very weak some of that time, I hold onto my husband's arm and we sometimes walk very slow and don't go far. It is just important to at least get out of my house and walk around the neighborhood. I haven't always been faithful at this in the past but lately it is part of what saves me. This practice is not just about exercise. It is about seeing the other part of the world, the other part of our reality, outside of our four walls and the screens that connect us now. 

The other thing that has worked for me is that I often take a camera with me or at least use my phone camera. The camera helps me really see what is there. The more I look, the more I am stunned at how abundant our world is. And by that I mean an abundance of beauty, of love, of glorious life! I look at the big and I look at the small details and the more I look, the more densely packed the world is with amazing life! 

This practice seeps into my relationships. I started noticing how incredible people are too. Although I'm less likely to take photos of them, I keep a heart picture of them inside of me. In the face of so many reasons to give up or lose hope, most people perservere and some even shine brighter than ever, making me wonder how I could let a little thing like spilled tea or lost keys or rush hour traffic bother me; making me think I can overcome this cancer and live on. And it makes me wonder how to invite that abunbance into the spotlight, so that we have hope of healing the community.

Today, my answer to that question is just to share some of my photos with you (see link at the end of this). The photos are all of trees and bushes in my neighborhood within a two-block radius of my house, that I took just this morning. We don't need to look far. We just need to look with eyes and hearts and ears open. There is hope. Here is some of my reason for being grateful and hopeful today. 

I pray that some day soon we'll know how to move through this time and find healing. I pray that my cancer will never come back. In the meantime, the trees and all of your hearts and all of your songs help keep me grounded in love and I hope this helps you too.

peace be with you, Jules

CLICK ON THIS LINK TO SEE THE WHOLE ALBUM

Breast Cancer Update--December 2020

It has been a while since my last breast cancer update. Until the holiday break, I was pretty busy catching up with work and friends and frankly just recovering. So I finally have a moment to sit down and catch you up a bit.

• SURGERY--December 2nd, I had a lumpectomy. They also took a lymph node. It has been 3 weeks and I am healing well. My energy level is good. My surgical wounds are healing, although not quite all the way yet. I met with my surgeon last week and he said all was healing well. I have some fluid in my breast at the sight of the lumpectomy but he said that will go away naturally and is rather normal for this type of surgery. My pain has gone way down, so I stopped taking the prescription pain meds.
• PATHOLOGY REPORT--the pathology report was good. The tissue they took from the margins around the lump was negative--no cancer. The lymph node they took out was negative--no cancer. The lump had shrunk considerably but not all the way. All of this was good news to me. I am excited to have it all out of me and leave that tumor behind in 2020.
• RADIATION TREATMENTS--even with all the good news, they are recommending radiation treatments because radiation can kill things they can't see. so I'll be doing those in January. I will be having 20 treatments, Monday through Friday, 5 days a week for 4 weeks. The radiologist says that the main side effect is fatigue with also some redness on the skin which can be treated with creams. Skin is pretty good a rejuvinating so that shouldn't be too bad. It will certainly be a lot less trouble than the chemotherapy has been.
• STILL RECOVERING FROM CHEMOTHERAPY--I continue to have a pretty bad case of neuropathy in both my feet (toes plus foot pads) and fingertips. So far it doesn't seem to be getting better but I am reassured that it sometimes takes up to a year for this to get better. Please pray for this healing. I would love to get my feeling back and have more control and not be so clutsy.

Meantime, I am so grateful for this holiday break without treatments and time to heal. Tomorrow, we will be foolish or brave and celebrate Christmas with our children and grandchildren, who happen to be our COVID bubble. I honestly haven't seen anyone else in person since I was diagnosed at the end of June and some people I haven't seen since February or March. 

I am also grateful for all the friends and family supporting me with prayer and phone calls or Zoom calls. I am so grateful for this support and wouldn't have survived this far without it. Thank you all for that!

I pray you have a healthy holiday celebration filled with PEACE and SURPRISES OF JOY! Merry Christmas! Happy New Year! 

with love and prayers,

Jules

RIDING THE WAVES

 
Sunday, August 23

It's Sunday morning, COVID-style plus cancer. Pete and I wake up slowly (there’s no hurry), then make some breakfast and watch Nativity's worship service online. While we watch we pass the peace to friends and family using our texting functions on our phones. We sing the songs, say the prayers and listen to the message for today. Today, we are not particularly inspired, but this routine is important to us. It's not what we long for but we cling to what we can these days. We cling to the community of faithful believers that we call Nativity, we cling to our faith, cling to our loved ones and to each other. Indeed, Pete and I have taken to holding hands while we listen, just to have that feeling of being truly connected to God's grace. This is the raft we are hanging on to as we ride the waves of my breast cancer, of the isolation of COVID-19 and the waves of political and racial unrest in our nation.

 Growing up next to the ocean, my experiences with waves were early and many. Some waves are gentle and you just let your body go with it. Some waves threaten to crush you. These are the ones you measure whether you can outswim or whether you will dive right under. Some waves invite the challenge of swimming fast enough to stay at the crest as long as possible. For me, having breast cancer is like riding waves. Most of my time is spent discerning how to ride the next wave out. The waves in this case, are the myriads of side effects of the chemotherapy that must be endured or managed.

 During my 4 treatments of AC Chemo (each 2 weeks apart in June and July), my side effects included ruined taste buds, constipation, diarrhea, excessive gas including hiccupping, sore feet and hands, sun rash, yeast rash and a recurring bladder infection. I am pretty exhausted from the constant dealing with one or the other of these things. And just as I am recovering from those, I have already begun the Taxol treatments. Everyone keeps saying that the Taxol treatments are easier to handle but that clearly doesn't include the fact that I'm still on antibiotics for a bladder infection. And all the antibiotics cause diarrhea and/or nausea. So the waves keep coming in and I keep doing my best to discern the best course of action for comfort and ease. I still have 11 weekly Taxol treatments to go.

 Some of the waves come in the form of overwhelming emotion. I feel weary and sorry for myself at times. I'm immensely lonely and yet have no desire to risk more infection from gathering with friends. At the same time, I’m overwhelmed by deep, deep gratitude for the incredible friends and family I am blessed to have. Pete, in particular, has always been a miracle of love for me and now is no exception. He keeps things going, takes care of my needs, does all the shopping and somehow manages to stay excited about his garden. And because there is time and cause, I also worry about the state of our nation. It is hard not to notice the turmoil of the division and the coming election. All these emotions, come in waves too, some with tears of joy, some with tears of sorrow and occasionally a scream or two escapes my lips as I cry out to God for help for all of us.

 The thing about riding waves is that the water doesn't intend to drown you. In fact, the buoyancy of water generally carries me and my little raft, holding me gently as the energy of the waves rocks me. I think of this as the Holy Spirit, the love of the Holy One holding me, carrying me along even as I do my best to manage the waves. Deep below the surface God's grace is holding me, whether I am capable of knowing it in the moment or not. This truth sustains me even when I can't pray, even when I can't see what to do. And I know that you all are part of bringing God's uplifting grace to me. Your notes of encouragement, your prayers and songs on my behalf, and your love all help keep me going and centered. So thank you for that. Trust me, it matters even when there is only silence between us, just as it matters that the water will carry this raft, even when I can no longer paddle.

 So please keep the prayers coming because there are more waves to come.

The Storm is Passing Over: update

This is just a short update to let you all know I did make it home from the hospital on Saturday evening but not until I had a blood transfusion. This was a first for me and and interesting experience to see the bag full of  someone else's blood going in. It was a good thing and helped me a lot. My thanks to all those who give blood to help others. I am extremely grateful.

Sunday was still a day of struggle but without that hospital visit and blood transfusion, I wouldn't have made it through yesterday. After a morning of diarrhea and some additional bladder pain, the antibiotics finally kicked in and things settled down. Sunday night I slept 9 hours. It was good! There is nothing like a great night of sleep for healing. 

Today, Monday, has been much better day. I've had some energy to do things. I have had a better appetite and eaten better. My nurse reassured me in a call today that I would get better and that the next round would not be as hard. I am hopeful.

I go to bed tonight with hope, with prayers for continued healing, with gratitude for the hearts of so many who love and care for each other. 

Good night all,

Jules 8/17/2020

Is the Storm Passing Over?

Saturday Morning Sunrise

Friday Night Storm

These two photos were taken from my hospital room at Southdale 12 hours apart, on my second night here. I was unable to take other pictures but inbetween those two photos, my window showed me quite a storm with lightning and rain and thunder and some sun glow even. This morning as I woke the words of this old spiritual came to me, "The Storm is passing over, the storm is passing over, the storm is passing over, alleluia." So last night's storm has passed and I hope that my personal little health storm has passed as well. 

Wednesday, August 5th, I had my last(4th) AC Chemo treatment. I knew that the cumulative effect could make the days following harder then my other treatments. I was hopeful when Thursday, August 6th was a fabulous day for me. Then Friday, I started crashing, feeling exhausted. Saturday, Sunday and Monday were brutal days. Constipation, diarrhea, excessive hiccuping and burping, gas, poor appetite and neuropathy (fingertip pain) are among the side effects I was experiencing. I did slowly improve and thought I was going to be okay. But I wasn't. Wednesday was a hard day and Thursday I was still struggling. Thursday afternoon/evening, after another hard day, it was clear I had a fever and chills. We called the nurse and were told I needed to go in to the ER and be checked out. I went to the ER and was diagnosed with neutropenia, an extreme low white blood count. They started me on IV antibiotics right away and then ran tests to look for cause. I was admitted late that night to Southdale Hospital. 

AC Chemo is known for causing the white count to dip but I guess I dipped a bit too low. As of this writing, they didn't find any cause. No COVID and no known bacteria, that I have heard yet. Evenso, my white blood count needs to be at a safe level for them to send me home. I am hoping that happens today. I am feeling much better. My diet has improved. My overall feeling is peaceful now. I hoping my storm has passed and I can go home and rest with ease again. I am hoping today is that day, the day my white blood count is high enough to go home. Cross your fingers.

Meantime, we've got others storms brewing in our world. So while we both wait, perhaps you'd like to listen to the song: The STORM is PASSING OVER. Enjoy!

Chemo #4: The Healing Prayers Continue

Last week was supposed to be my off-week, my between week, with time to recover from my last chemo and focus on other things but alas it was not to be. I got a second bladder infection that lasted through the week as the docs tried to find the right antibiotic for me. I finally got some Bactrim on Friday afternoon and was on the mend quickly after that. I am fine now, though the yeast rash persists. 

Then yesterday, August 5^th, something cool happened. I had my last AC Chemo treatment! This is a good thing! (A for Adriamycin and C for Cyclophosphamide).  As usual, on the day of chemo treatment, I felt pretty good. I was finally feeling energetic and well on Tuesday and Wednesday this week. The treatment itself is not painful and I haven’t had any nausea issues. The treatment room is quiet and peaceful with nurses tending to their patients. I listen to music on my ear buds; usually Luke playing piano. I do some puzzles and some writing or answering emails and the two hours fly by. It’s weird to sit there and let someone inject toxins it your bloodstream but it’s not painful for me.

And yet I’m thrilled to be done with AC! Over the course 8 weeks it has worn me down. Each time, I have moved to a more vulnerable place. For me the side effects of AC were mostly fatigue and a compromised immune system. It’s weird though, I was expecting colds and flu and COVID-19. What I’ve had to deal with instead is constipation, bloating, a yeast infection, a bladder infection and more recently a sun rash as AC makes your skin really sensitive. In addition, I’ve had some unusual soreness on the pads of my feet and after walking barefoot much of my life, this has been very strange. With each physical annoyance, I’m learning again how very clever our bodies are at taking care of themselves and healing themselves, often when we are not even aware, that is, until that ability is taken away. And with each physical annoyance, I am learning to respect how vulnerable I am right now. I just need to leave room in my schedule for lots of rest between activity. Oh and I did lose my hair after Chemo Treatment #2. So I’m experimenting with varying headwear now.

I forgot to say, I saw my oncologist on Monday. She agreed with me that the tumor has begun to respond to the treatment and is shrinking. (they have not done another scan yet though) This is good news as I still have 3 months of treatment left to go.

I appreciate all the prayers and songs and love that are helping me to stay in the game and helping that tumor to shrink…sooooo grateful! Every prayer, every song, every kindness adds to the healing.

So now I get two weeks and then we start the Taxol treatment which be weekly for 12 weeks. That will be another learning curve, easier in some ways, harder in others. Theoretically, if all goes according to plan, Election Day is November 3^rd and the next day, November 4^th, will be my last chemotherapy treatment so I’m praying for good results in both cases and I’m asking you to keep praying with me for both. Please pray with me!

Oh Holy One, work your healing love, life and grace in us. Give us courage for what needs to be done to be part of that healing. Give us wisdom and practical insight that we might know how to work together, how to restore peace in our hearts, how to help others, how to do our own work. Help us to rest when needed, to let ourselves be filled with hope that we might wake ready to love through another day. Fill us with a forgiving spirit that the hard times may become compost for growth and peace instead of barriers. Protect us from being overwhelmed by loneliness and despair during this time of distancing and division. Instead fill us with the truth that we are never alone, ever. You are the source of all life and love. We place our hope in you always. Amen

 

Blessings on your days,

Jules

8/6/2020

Chemo #3: Giving Thanks for a Great Day

Chemo #3--July 22, 2020

Just a month ago, I was having surgery to place a port in my chest for chemotherapy treatments. Today, I had my 3rd AC (Adriamycin/Cytoxan) Chemo treatment and I had an amazing day. For that I am grateful and I am quite sure you all have been a part of that. 

 

I woke up early, which is normal for me. I felt rested and energetic so I went and weeded in Pete's garden a little before he even woke up. Then I made breakfast. We had a virtual visit with my oncologist which was short and sweet. I found out my blood counts are doing well which lifted my spirits considerably. Then Pete dropped me off at Southdale Hospital for my Chemo.

So far, for me, the chemo treatment room, which has other people gettting treated, is a very calm place, a peaceful place. And I am lucky to not have any nausea so I can just relax about that. The time, 2 hrs, just flies by and it's over before I hardly do anything on my computer.

Afterward, Pete got me my favorite take-out foods...Leann Chin sesame chicken and a stop at the bakery for a carmel roll. I can't eat much at once but what I did was delicious. 

Then I had a very rich conversation with an old friend who has been growing alongside me for 40 years! And after that, another friend made a song and sent it to me...what a gift! and I got to chat with her too. Meantime the mail came and in it another card encouraging me.

So then, I had energy to make Pete dinner and for that too, I am grateful. Tomorrow, I will likely be more tired as the chemo sinks into my body. I am learning that my body is more vulnerable than I had expected, that I can't just fight off everything or recover like normal from activity. And that vulnerability is teaching me to enjoy the energy days even more.

Meantime, I can't thank all of my friends enough, for the cards, the love, the support, the offers of help and prayer and song. I know we're supposed to be doing something to change the world now, to overcome racism and other things. What if we all flooded the world with kind thoughts, love, support, cards, kind deeds? what if we could change the world with intention and prayer and song? 

This card came today!

Tonight I'll sleep well and then....

Tomorrow will bring its own challenges and vulnerability.

Tomorrow I'll still have a beautiful community of friends and family.

Tomorrow I'll still have the trees in my back yard.

Tomorrow I'll have the option to surrender to rest and healing.

And I'll hope to have energy to share the love and kindness with my neighbor, that the kindness might change the world.

Good night! Sleep well.

Jules

THE THEME IS HEALING

Dear friends, family, random reader,

Oh what a journey and a challenge the chaos of 2020 is! As if the world and national chaos of COVID-19 and racial injustice is not enough, I now have some personal chaos to deal with. The theme is healing! Healing! Healing!

On May 28th, just 3 days after George Floyd was killed, I found a lump in my breast. Fast forward to Monday, June 22nd. After a whole bunch of tests, including a biopsy, I have been diagnosed with breast cancer. Monday morning I have a "port placement" surgery. Then Wednesday, June 24nd, I will begin the road to healing by having my first chemotherapy treatment. The rest of this year and into the next will be focused on doing what is needed to stop the cancer and get rid of it. Unfortunately, many of you already know the drill.

I appreciate all prayers and songs that are offered. I believe we always make a difference in the world when we offer compassion to each other, in whatever way we can. It works even at a distance. It's one of the miracles of life that we can do this for each other. We can be part of the healing in this way.

Please also put those same good thoughts and prayers and songs toward bringing healing to our state, our nation, our black neighbors, our indigineous neighbors, and all of us. If you don't have anything else, just offer this one intention into the world, "Healing! Healing! Healing!"

I mention all this because I imagine that this cancer journey will change the way I post on social media. It will alter the way I look at life. It may at times cause me to withdraw so I can rest and heal. It may at times discourage me. I may not feel like sharing every detail with the world.

I hope to use some of my chemotherapy hours to write more but who knows? It is an unknown path I take now. We'll just have to see how it goes. I know only this, that I trust my friends to hold me in their hearts and that I will be holding them in mine as well. I know only this, that no matter what happens, love wins.

From the bottom of my heart, I thank you for the gift of such dear friends and precious family. Thank you! Thank you! thank you!

And remember, the theme for 2020 is healing. Healing for our city, our state, our nation. Healing for our families, our elders, our young. Healing for our leadership, our systems. Healing for our black and indigineous neighbors. Healing for the world. The theme, the prayer, the hope is healing!

Pete & I --June 21, 2020