Author: Heather James

It’s been a long couple weeks with all the expected highs and lows. With significant uncertainty about the best next step, it’s been hard to know what to communicate with others. Thank you for your continued prayers, words of encouragement, and support. It means so much in the ups and downs of this time.

Wanting to share some sort of update with you, I’ve been reflecting on what has happened over the past two weeks and what we do know about what is next. No trigger warning needed as I will spare you the details, but everything seems to revolve around needles.

💉 The thyroid molecular test returned with a low cancer threat, so I am grateful to be able to lay that concern aside. The molecular test was done about six weeks ago with several large biopsy needles. The material removed was sent to a lab and the report came back a few days ago. My ENT surgeon will continue to monitor my thyroid health yearly with ultrasounds, and no further intervention will be necessary as long as everything stays the same.

💉 I went through my radiation simulation a few days ago, and was given tattooed marks that will help the radiation doctor and technicians line me up in the machine for treatment. Right now, I’m scheduled to begin radiation treatment at the end of September, and will go five days a week for four weeks.

💉 The start date for treatment is unknown as I am still being treated for a seroma—fluid that is collecting in the space left when the tumor was removed. Usually, seromas are emptied and addressed in reconstruction surgery. Because my reconstruction turned into an abscess management surgery, the seroma went untouched. The surgical team began to address the issue a few weeks later as it became clear I was no longer a candidate for reconstruction.

Initially, aspirating 💉 the seroma yielded about 160ml of fluid (almost two specimen vials full). We are down to about 70ml per time, and are stepping up the aspiration schedule to every other day. In a perfect world, the seroma would be healed (no longer filling with fluid) before radiation begins. As radiation progresses, the tissue is no longer able to absorb fluid and the seroma would be come a chronic condition where the discomfort it causes would be permanent. However, we are nearing the end of the time frame when starting radiation would still be considered an effective treatment option. The ongoing management of the tumor site and abscess has really upset the normal sequence of events.

It’s been difficult to navigate the different care teams and seeking answers to my question about the effectiveness, safety, and timing of radiation treatment. My frustration level has been high as the different teams seem to have different opinions. Yesterday I was able to talk with my cancer surgeon about my concerns and was grateful for her assurance that she would make the connections needed to get the answers I am seeking.

I’m tired. But trusting that what is murky will come clear. What is sharp will soften over time. And that at some point, there will be an end to this part of my life. I’m ready to shift my energy to something more life-giving (I recognize the irony in that statement) but for now I will continue to put my energy into healing and holding on to hope.

On another note, Hana is glad to be an eight grader and back in school with her friends! It’s volleyball season and our next several weeks are filled with games and tournaments. Unfortunately, she’s caught the obligatory beginning-of-school illness and recovery has been slow. She is looking forward to being back to full strength and her full schedule soon.

Hope With Me:

• For the seroma to be resolved and healed.
• For that healing and resolution to happen before radiation begins, AND in time for radiation to still be an effective treatment option.
• For my own energy and outlook as I navigate between doctors, opinions, personal conviction, and treatments.
• For Hana’s return to health, and that I would stay healthy during this back-to-school season.
• Giving thanks for the good thyroid report and taking that treatment plan off my plate.

It’s been an intense week of ups and downs. Grateful for the care of this community and your willingness to cheer me on through these challenging days.

I’m grateful to report a couple things today.

First, the wound is showing signs of healthy closure, and the nurse verified that the antibiotics are working. She anticipates that we will wrap up this management phase next week and then just need to monitor for healthy signs of healing.

In addition, the surgeon’s office has arranged for me to see another plastic surgeon and get a second opinion regarding the reconstruction. This seems complicated as there are technical moving parts trying to get the wound healed, and move into the next cancer treatment phase. It may be that the window is truly closed, but it seems wise to gather more information and find out all my options.

Last but not least, my tumor’s Oncotype DX score was low (20 out of 100) which means no chemo. I’m moving straight to radiation and medication to help reduce the risk of recurrence.

At the end of a hard week, this morning was refreshing to body, mind, and spirit. It still feels like a technical climb, but without quite so much scree.

Hope With Me:

• Gratitude for today’s good news all the way around.
• For good rest in the midst of wound care, medical decisions, and anticipation of what is to come.
• For our family as school starts up. For new good habits, healthy choices, and the joy of renewed friendship.For our family as school starts up. For new good habits, healthy choices, and the joy of renewed friendship.
• For healing for this wound and patience with the process.

Back when I was posting on the previous platform, I said that I would prefer not to call this experience a season, a journey, or an adventure. Instead, I used the word navigate. Somehow I need to navigate this experience. Some days it feels like an obstacle. Other days it’s more of a stalled engine. Today, it feels like mountain climbing. On scree. With no ropes.

The infection continues to need attention – I was given ten additional days of the stronger antibiotic with hope that the greater dose would do the trick. I continue to have the wound management protocols, although yesterday the nurse came up with an alternative method that is far less invasive and requires less intervention. Let’s call that a win.

The second surgery, reconstruction, has been cancelled. Given the infection, and another ongoing issue with the lumpectomy site, the surgeon does not feel it is wise to do anything further. If everything went according to plan, we might be able to manage the timing of surgery and upcoming cancer treatments, but he is not willing to risk a complication that would delay the cancer care.

On Friday, I will meet with the oncologist for a review of the tumor’s oncotype score and find out his recommendation for necessary treatment. Having the second surgery cancelled will make this process a bit more straight forward, but for today it still feels like sliding back on scree.

Friday will bring its own challenges, but we will navigate them when they come. We brought our dog back home from the kennel today which brings joy and lots of furry snuggles. Hana has started volleyball practices for her school’s MS team and is delighted to be back on the court with her friends. This weekend will hold some fun time with both family and friends—an opportunity to rest and play a bit before dropping Hana off at school for the first day of 8th grade this week. All in all, we are doing well. And there are brighter days ahead.

Hope With Me:

• For good rest in the midst of wound care, medical decisions, and anticipation of what is to come.
• For our family as school starts up. For new good habits, healthy choices, and the joy of renewed friendship.
• For healing for this wound and patience with the process.

On Monday morning bright and early, I checked in for surgery #2. We thought we were on track, and the nurses and doctor working with me were optimistic about a successful procedure.

Once I was asleep and on the table, the doctor discovered an abscess deep in the lymph node incision from surgery #1. It was extensive, and problematic. While I was still under anesthesia, the doctor was able to clean out the infection and start a protocol for healing. I woke up to find out that things hadn’t gone according to plan.

While the set back is a small disappointment, my greater emotion was relief. I had been in great pain for about a week—I had been in three times to have it looked at, but the problem went undiagnosed. Wound management has proven to be painful and exhausting, but is considerably more tolerable that last week’s unexplained and debilitating pain.

We have a plan for treatment for the next couple weeks, and then I will go back to meet with the second surgeon and hopefully receive a go ahead for the surgery to be rescheduled.

I’m deeply grateful for family and friends who have stayed with me, provided much needed nursing care (wound care I am unable to do for myself), and cared for Hana’s needs while I’m unable to drive and manage basic household tasks. We feel incredibly loved and supported.

Hope With Me:

• For total healing of this infection
• For a rescheduled surgery #2 that won’t be in conflict with other ongoing oncology treatment plans
• For pain to continue to subside
• For laughter with friends and family as I seek to heal in body, mind, and spirit

Thank you for the many ways you have come around us with provisions, encouragement, help with heavy lifting, and other tangible assists. This morning I am particularly grateful to so many people who have engaged Hana in some new adventures as well as time with old friends. Thank you for helping us both navigate this summer with laughter and love.

Healing from surgery 1 has been a slow road. I am doing well, and still needing to manage pain and swelling as the tissue recovers.

The pathology report came back with good news. The tumor was a 6cm mass of ductal carcinoma (non-invasive form of breast cancer) with areas of invasive cancer within it. There was no cancer found in the margins of the tumor or within the lymph nodes biopsied. I will be meeting with my oncologist this coming week to discuss the treatment path from here.

My oncologist also sent me to an ENT specialist for further study of the masses in my thyroid. He was very helpful, and also slowed the process down a bit assuring me that we can take steps to understand what is happening in my thyroid without needing to do immediate surgery. I will be going in on Monday for a second thyroid biopsy that will be more extensive and also include molecular testing of the masses so that we know whether surgery will be needed.

My dance card is full this week as I move through these appointments along with beginning physical therapy and doing surgery pre-op appointments for the next surgery happening the week of August 12.

Hope With Me:

• For the biopsy of the thyroid to be effective in helping us understand next steps needed and for those masses to be benign.
• For continued rest and restoration of my energy.
• For continued healing of the swelling and management of pain from the first surgery.
• For laughter and joyful time with friends and family as we continue to make the most of the summer we’ve been given.

For those wanting other ideas about how to walk with us in this process, you can scroll down past the other updates and find a “Ways You Can Help” list below.

I woke up yesterday morning with the thought ‘Today’s going to be a good day.’

It was. The care team at the Regional Cancer Center was amazing. My surgeon was the right expert in the right place at the right time. The tumor has been removed, and I’m resting comfortably at my parents’ home, sleeping in a cozy arm chair that is full of fond memories.

The sleepiness and brain fog of the anesthesia are still with me. The surgical site is sore, but we’ve found a rhythm of meds that seem to be keeping the worst of it at bay. Going slow will be the theme for a while.

There were some lovely moments of robust laughter with surgeon and staff, the thoughtful care of the pre- and post- op teams, deep gratitude for my family’s support, and the way I could feel you all holding me up. Thank you for holding us in light, love, and hope.

Hope With Me:

• For an effective pathology report that will give us a clear path for treatment.
• As always, holding on to hope that the lymph nodes will be cancer free.
• For good rest and pain management.

It’s been a great two weeks of time with friends, mountains, water, and rest. I’m on my fourth Inspector Gamache novel and well into Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. I’ve hiked, napped, and enjoyed long conversations with dear friends in beautiful settings.

During my time at Holden Village, a friend asked what goals or hopes we had for our time there. It was a great question and helped me focus my time on the things that really mattered – deep connection with others, laughter, and being grounded in creation (or earthing). I spent time everyday barefoot in the grass, looking up at the mountains, and cold dipping in the river. I sat on the porch with friends, enjoying good coffee and conversation or playing improv games and celebrating space monkeys.

The week at Holden followed a few nights of camping with a dear friend out at the coast. It gave us a chance to escape the heat, play Triominos, and enjoy the sound of the ocean in the dark of night.

My heart is full. I’m rested. I’m ready.

The first cancer surgery happens this week. Step one is a lumpectomy where they will remove the tumor and surrounding tissue, as well as 6-8 lymph nodes on my left side. There’s a wildly amazing process by which they inject an agent that will travel from the tumor site up through the lymph system. The surgeon will remove the first (sentinel) node and several of the next tier nodes. The pathology of the tumor and the lymph nodes will be what determines the treatment moving forward: chemo, radiation, and/or medication.

I will have about 2 weeks to recover from the lumpectomy and then if all goes as planned, I will have the second surgery (reconstruction) the week of August 12.

In addition, I have an appointment this Friday with the ENT surgeon who will be helping me understand my options for addressing the suspicious masses they discovered in my thyroid.

Thank you to so many who have offered us help, sent words of encouragement, provided gift cards for food delivery, donated to help cover medical costs, showed up to mow my lawn and weed the flower beds… the list goes on. Hana and I are so very grateful for your care and support in both words and deeds. Thank you for being the community that is holding us in this different sort of time.

Hope With Me:

• For an effective and successful surgery this week to remove the cancer and figure out the best next steps for treatment.
• Peace for myself and my family as we walk through the days ahead.
• For the willingness to learn how to “do very little slowly” as I give my body time to heal and recover. (Credit to Lionel Hardcastle in As Time Goes By for that helpful description.)

I loved being in worship with my congregation at Japanese Presbyterian this morning. The songs and spoken word resonated with themes of being loved and held in the midst of difficult things. It was an encouraging way to transition from work to medical leave and a time of healing.

The next few weeks are full, but also intentionally planned to be restful and peaceful. Ocean and mountains. People and solitude. Movement and stillness. With a few pre-op appointments thrown in for good measure.

Thank you for wanting to follow along and stand with me in hope as we navigate this next step of surgeries, treatment, and intervention. I’m grateful to have you by my side.

Hope With Me:

• For deep rest, lots of laughter, and thoughtful conversations over the next few weeks.

• For the first surgery (lumpectomy and lymph node biopsy) to be successful in removing all the breast cancer with clear margins. (I am hoping for cancer-free lymph nodes as well!)

• For peace during the waiting times—waiting for surgery, waiting for pathology reports, waiting for follow up appointments.

Welcome to the new place to find updates about Heather’s cancer treatment and recovery. 

First, a couple notes: The previous platform (posthope.org) was permanently shut down. Those updates are lost to cyberspace, but I believe all the donations made through the site were deposited into my account prior to the closure. If you have questions about this, please email me for clarification. 

Many of you have asked how to support Hana and I during this time. I’ve created a short list of links under the heading “Ways You Can Help” and hope that gives you some tangible ideas. 

If you want to subscribe and receive an email when I post an update, sign up for the personal update mailing list. 

I will also end each post with a “Hope with Me” list. I am so grateful to be surrounded by a diverse and thoughtful community. Some of us pray, some send good mojo, some hold others in light, others know just the right words, or can offer a good laugh. One of the best ways to support us right now is to hold onto hope with us – in whatever way is authentic for you. I’m deeply grateful you are here, and walking with us. 

Finally, a quick re-cap and health update: 

On May 10th, I was diagnosed with ER/PR+, HER2- breast cancer. There’s a longer story to the cancer’s discovery that I will save for another post. In the days following the diagnosis, I received a myriad of scans and tests to figure out the nature of the tumor and the effect on my body’s wellbeing. In that process, they discovered three unfriendly masses in my thyroid. Two of them were biopsied, and one was determined to be highly suspicious. 

The current treatment plan is for a lumpectomy with lymph node removal in July, reconstructive surgery in August, to be followed by thyroid surgery in late August or early September. The pathology of the tumor and lymph nodes will determine whether the next steps will involve both chemo and radiation. The oncologist will be designing treatment based on both the breast cancer and the final thyroid pathology.

Hope with Me: 

• This health challenge is renovating my life in some significant ways, starting with the need to slow down, rest, and learn to heal. Hope with me for an open heart to receive these lessons and let slower days be enough. 

• That Hana and I would find ways to connect and play.

• For this final week of work at my church before I begin medical leave – for good connections, and the wisdom to finish what needs to be done and let the rest go.