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.

BREAST CANCER UPDATE: Xeloda Round #3

DAY 1 OF ROUND 3 OUT 6 OF TAKING XELODA

The pattern to taking Xeloda has been taking four 500mg pills twice a day for 14 days, then 7 days off. So I just finished my “week off” and am starting on Round 3 of this pattern with one exception. My dose is now three 500mg pills twice a day instead of four.

One of the most common side effects of Xeloda is something called “hand/foot syndrome.” Hand-foot syndrome causes redness, swelling, and pain on the palms of the hands and/or the soles of the feet. Blisters are possible Just to be clear, this is not the same as peripheral neuropathy which is damage to the nerves of your hands and feet.

I already had neuropathy from having Taxol infusions last year. That neuropathy has not gone away and is aggravated by this new side effect of hand/foot syndrome. So now I have a combination of numbness, tingling, redness, and pain on both the soles of my feet and my fingers. In one case I did get blister on my foot. By the end of the second two weeks of taking the Xeloda my hands and feet were pretty sore.

Tylenol takes some of the edge off. I use a lot of lotions and ointments and wear socks and gloves to protect them. My body has clearly liked this last “week off.” Both my feet and hands recovered some. It is a strange thing to experience this.  It is very hard to describe the sensations when there is a combination of numbness and pain. I have moments when I despair and grieve for the loss of my amazing healthy feet. Other times I find myself wallowing in deep gratitude for being able to still walk, to still type, however clumsily, to still be able to sing, to still be connected to friends and a delicious family. And I continue to be in awe of how magnificently our bodies are made, that even with all this stress, all these chemicals, the body continues to work on healing and making way for the sun and moon to shine within, the joy and sorrow to bring their colors. What a magnificent body it is; even as it is struggling or even more so as it struggles. Wow!

So, after letting my doctor know how things were going, she lowered my dosage for this next round. I pray that the side effects will be less severe this time around. If all goes well and I can hang in there for all 6 rounds of this, my last dose will be June 25, exactly a year after my first chemotherapy infusion in 2020. Please pray with me that this is the end of treatments and the end of any and all cancer in my body.

OTHER THINGS ARE HAPPENING

Meantime, other life is happening. Pete is project manager in replacing our old garage with a new one. The foundation for the new garage was poured on Good Friday which seems like a nice coincidence. In this Easter/Spring season, the garage will be coming to life also. Managing the project has taking a lot of Pete’s energy and I am extremely grateful I don’t need to do much. We have a friend of Pete’s sister Karen helping with the building of the shell. Pete & other Bonde members or friends will be putting on the siding and roof shingles and installing the electricity. I’m not sure how much Mr. Pete has time for his garden but I’m sure something will grow there anyway. Like our bodies, plants are also tenacious beings. 

Meantime, we also pray for our city (The Twin Cities), for our nation and the world, that healing may come to everyone’s body, to everyone’s heart and to everyone’s family and community. That love may come. That peace may grow out of gratitude and joy.

That kindness will be the habit that lines the streets and manages the space between us.

THANK YOU FOR ALL YOUR KINDNESS AND PRAYERS!

~love, Jules

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

PHASE TWO OF TREATMENT: SURGERY

Good Morning Dear Friends and Family,

Now that chemotherapy is done, it is time to plan for the next phase of treatment: surgery.

I had my breast MRI and chest CT scans last Friday. They showed that my tumor had shrunk from its original length of 4cm (which is quite large) to 1.7 cm. This is significant change. The chemo worked! The scans also continue to show that all of the cancer is contained in the one tumor. No other activity is showing up on the scans. 

Then we saw my surgeon on Tuesday. He was also impressed with the response of the tumor. I will be having a lumpectomy, which is the smallest surgery one could expect from breast cancer. I am grateful. The surgeon was very encouraging about the surgery, that it would much easier to handle than my chemotherapy.  He also was encouraging about the radiation that would follow,  saying that the risk of radiation is so small, it is worth doing.

HERE'S THE PLAN:

• November 18--I will begin my quarantine to prepare for surgery. this means no in-person company for Thanksgiving. Sorry guys!
• Surgery--December 2nd, 11:00 am--I am scheduled for my lumpectomy. He will remove what's left of my tumor and also take a lymph node out just to be sure there is no activity in the lymph system. This is an outpatient surgery.. I will NOT be staying at the hospital.
• Radiation--3 to 4 weeks after surgery, I will begin radation treatments. The treatments will last 4 to 6 weeks. I'll get more details on this later.

HOW I AM:

I am feeling pretty confident about this next phase. I am excited that surgery means the cancer will finally be gone and I can leave it behind in 2020, literally. I grateful that I will have less side effects to deal with. I look forward to continued healing and gaining of strength in the new year. 

I am noticing my energy returning in tiny increments but each little thing matters. Yesterday, I did some closet cleaning, even worked up a sweat. How cool is that!

Meantime, I have a long, long way to go on healing from the neuropathy. That may take six months or longer? 

Other days, I am sad, that this coming holiday season will not be people coming together. I am sad for myself and for all of us. I pray we find fun,  creative ways to deal this challenge. 

Some of the things that are helping me are regular Zoom meetings with friends. Each Thursday, I meet with my book group from church. Wonderful conversations! Each Tuesday, I meet with two of my writing friends. We give ourselves an assignment and then read to each other what we wrote for that assignment, as well as check in. Each month, I meet with my peer group and my Morningstar Singers choir as well. And I have a goal of reaching out to one person beyond these walls each day.  This may seem like a lot to some of you but when you compare it to how many people we used to see daily as we worked and played and lived, it is not a lot. But it is enough to keep me going.

I am blessed to be so rich in people resources! Thanks again to each of you for your love and care and encouragement and of course, your prayers and songs.

May you each have a blessed Thanksgiving!

with all my heart, Jules

and greetings from Pete as well

Jules' Cancer Update: CHEMO IS DONE!

YES! YES! YES!

 Good News!

I am officially done with chemotherapy! 

As of this moment (November 4, 2020), I will begin the detoxing and my body will have a chance to recover from all the poisons. I am so excited!

What's next? I will have my CT and MRI scans on Friday. I will meet with the surgeon next week to determine what happens next. 

YES! YES! YES! YES! YES! YES!

CHEMOTHERAPY: APPROACHING THE END

Breast Cancer Update—November 1, 2020

What a chaotic and miserable ride the year 2020 has been so far! With COVID and civil unrest and the chaotic election campaign and then for me, breast cancer! It’s all a big messy pile of tangled garbage to me! I found my cancer lump the week George Floyd was murdered and I’m ending my first phase of treatment the same week as election day! Ugh!

It’s been nearly 5 months since my breast cancer diagnosis, and I am almost done with the chemotherapy treatment phase. I have one more Taxol treatment on the calendar this week on Wednesday. I have an agreement with my oncologist that this last treatment is negotiable. I will meet with her online Wednesday morning before my treatment to make that final decision.

Throughout the treatment so far, I have been hit rather hard with side effects caused by the chemotherapy drugs. Even the doctors and nurses have said that I have had more than my fair share. Currently my feet are quite numb, especially my toes and foot pads. This causes me to be a bit unstable as my feet don’t really feel the ground. In addition, I have neuropathy damage in my fingertips as well. My fingers are also clumsy as a result. My fingernails are also extremely affected by this. There is some pain with this but mostly it is unnerving and makes me shaky. Throughout the treatment I have had lots of issues with digestion and intestines as well. In addition, I usually have a couple of days each weekly cycle when my bones in my legs just ache. Most recently, I’m having some episodes that cause my arms and legs to tremor for a bit.

And now, nearing the end, I am starting to have hope that as I detox from this, my body will find ways to recover and heal. At least that is what I pray for.

What’s next? This coming Friday I will have my follow up scans to see how well we did. I am praying for a good report. I won’t really know the answer until I have my consult with the surgeon the following week. And then we will see what’s next.

Meantime, I am and have been grateful to know that all of you are there holding me up in your hearts. Your prayers and friendship mean so much to me. I have even had the chance to have a couple of longer conversations with friends recently, conversations that remind me how precious each of you really are.  I can’t thank you enough. Truly! Your support means the world to me, even if you have not heard from me.

And now I pray for peace in our country, for God’s arms to wrap us in his abundant love and grace and fill us with wisdom for the next steps.

As I enter this next phase of my cancer treatment and the election comes to a close, I’d like to share this thought with you:

When all seems lost in the chaos, lean into the LOVE you know is real! Lean into the Holy One, lean into the trees, sun, and wind. Lean into the friendships and people you trust. The trees, the sun, the ground, your friends and the Holy One will never stop supporting you. Let that LOVE you KNOW fill you to fullness! Let that be the LOVE you breathe in today! 

This is going to be my new daily practice this week. I’m going to lean in to that LOVE! I invite you to do the same!

Peace be with you, Jules

SONGS & PRAYERS & PAPER HUGS

9/3/2020

 Hi all you beautiful people! I am so grateful to all of you!

 I started this breast cancer journey way back at the end of May. The end of June I started my AC Chemo treatments. Then on August 26^th, I started my Taxol chemo treatments and have had 3 so far. I have 9 weekly treatments left of Taxol. Following that, I will have scans and discover with the doctor, what, if any surgery is needed.

 Some of you know that I had a pretty rough go of it with the AC Chemo, with August being the worst month. In addition to multiple side effects, I had about 4 weeks where I just couldn’t shake a bladder infection. As of today, I have been without a bladder infection and antibiotics for a week! This helps immensely with my ability to eat and digest as the antibiotics caused a lot of diarrhea. Also, my taste buds are finally recovering so the food is starting to taste good again! And that means I have more energy for living. Pete & I have started going for daily walk again! I am actually quite excited about this progress and hopeful that the rest of the 9 weeks will be easier.

 Meantime, I’m acutely aware that I’ve been held by your prayers, your songs and your notes of encouragement. Some of those notes came in the form of cards or as I like to call them now, paper hugs. Some of those notes came through texts or emails. And some I got directly from phone calls and chats on Zoom or Facebook. This week on Monday evening, I got an extra dose of love and support from my beloved Morning Star Singers as they gathered on Zoom to sing to me and also to another member, Bill. What a sweet hour of encouragement and love that was. I cried tears of love and joy for the gift of these sweet people who have given so much of their voices to encourage healing in others. Thank you, Morning Star Singers! And thank you to each and everyone of you who have offered me prayers and notes of encouragement. I couldn’t do this without you!

 There is still a long way to go. So please keep praying that this chemotherapy process shrinks the tumor down to nothing. It’s a lot of fuss to go through so I am praying it works! And please keep praying for my husband, Pete, who offers me so much love and support and sometimes gets weary of my struggle.

 Thanks again to all you beautiful people!

Sending my love,

jules

Here are some photos of all the paper hugs I’ve gotten.