Gratitude One Day at a Time (Migrated from PostHope)

I know I have said the healing is hard work - which it is.  Though the healing process is not yet finished, I have made much progress.  This past Friday we celebrated one month since I was discharged from the hospital with a drive (myself at the wheel) to see a friend. Jason drove us home afterward.  Saturday morning we continued our celebration with some waffles topped with strawberries and whipped cream.   All "restrictions" are now lifted so I am only limited now by what my energy will allow which tends to wane in the afternoon. Mostly the pain I experience is in the evening leading up to bedtime. Something, perhaps, of the weight of the day and gravity pulling on the still-healing muscle and tissues inside may be what causes this. All my reservations regarding the evils of "Big Pharma" aside, I am grateful for the nerve-pain helper I take each night so I can sleep and feel rested for the next day. Other than that, regular acetaminophen and the occasional dose of naproxen keep me functioning at incrementally higher levels each day. I can occasionally throw a fetch-toy or a stick for Samwise to chase on our walks. I'm sitting at my desk to write this instead of in the recliner with my laptop. I have NOT lost any more weight - which I suppose is a good sign.  The surgeon had told me to expect further weight loss as the swelling subsided - so I am happy to interpret this as a sign that my strength is returning, slowly but surely.  

Though my appointment with the sarcoma specialist is still one week away - I will slowly be getting back to some remote work as my energy allows.  I continue to be grateful for the flexibility of Good Samaritan Family Resource Center in welcoming the services that I am slowly able to provide as I navigate my health.  I'm excited and encouraged to be connecting with my colleagues in this way as well. I feel both ready and hesitant to make plans for the future - both immediate and longer term - at the moment.  I can give a tentative "yes" to workshop programming for April/May.  I will likely go ahead and book a flight to be in attendance and celebrate with my son, Mateo, as he graduates for college in May.  I'm eager to set a date for our next advisory board meeting and to continue with preparations for launching our Waypoint ministry (do let me know via email if you'd like further updates on that and are not yet on our mailing list:  dawnoelle@gmail.com). Thinking about the wedding feast celebration in August still feels a tad overwhelming at the moment. 

So, today...I have watered my plants, made some banana bread, and gathered some pine cones. Tomorrow I'll probably drive to the post office. I am grateful in a new way for the strength to engage in each of these simple tasks.  

I'll end with a little joy here, something that I just stumbled across. Since the songs in my last post seemed to be a blessing to more than just me, I'll offer this one as well. It continues to bless my heart - all the way from Nigeria. 

Elshadai Music - Covenant Keeping God | Victoria Orenze

In the bold confidence of God's care. 

-Dawn Noelle

ALL MY SENSES (Migrated from PostHope)

Quick detail for those of you who aren't really keen on reading all my reflections.  My video visit with the doctor at UCSF who specializes in liposarcoma (or at least sarcoma - I'm fuzzy on how these specialties work) has been scheduled for March 7.  At first glance it feels like a long time to wait but I'm actually grateful for some room to breathe, heal, and reflect in the meantime. "Spaciousness" was a timely word sent to me as I settled into this sentiment.  

It's been a month since surgery and I'm slowly gaining focus (a little like the image coming into focus on the puzzle), returning to life giving rhythms of reading and writing.  I finally opened up a book I have been wanting to read again.  Hannah Coulter by Wendell Berry held special meaning for me in processing my mother's journey with thyroid cancer.  At the end of the first chapter, the voice of the title's namesake states:

"This is the story of my life, that while I lived it weighed upon me and pressed against me and filled all my senses to overflowing and now is like a dream dreamed . . .This is my story, my giving of thanks."

This statement at the end of chapter one, coupled with an episode of "The Chosen" (in which Jesus,Y'shua, is exhausted at the end of a day dedicated to healing the masses who sought him out in the desert) gave inspiration to the following poem - the reflection that I so relish in these days of preparation. 

As muscles tighten and sustenance flows

Discomfort, pain, joy, exhilaration, contemplation and digestion

I have never been so aware of the movement of my bowels

Breathe deep, but not too fast, lest the diphragmatic jolt radiate like lightening into my shoulders

Breathe deep, nonetheless, slowly, surely, take it all in

The sun on my face, the glint in my eyes, the light on the page, allowing me sight to write

The crackle of the fire and the whine of the cello, each delivered to a different ear

The cold of the window and the warmth of the pillow

The smell of my morning coffee lingering with the aroma of yesterday's burger

The mundane and the divine swirl around me and press into my body and my spirit.

The ache in my core both a sign of healing and foreboding of what is to come

This time of preparation belongs only to You - the God who sees, hears, smells, tastes, and feels

Exhausted and ready for rest at the end of a full day of healing.

The tangible notes of love (stickers on an envelope transferred to my journal as well as the multiple text messages, emails, songs, and scriptures sent) fill my senses with the hope of each new day.  Here's a couple of songs for those still reading. May they lift your spirits as they have mine. 

Majo y Dan - Me Sostendrá

The More I Seek You - Kari Jobe

In the bold confidence of God's care, 

Dawn Noelle

Uncertainty is the domain of faith...(Migrated from PostHope)

 I took a walk yesterday. It was the longest walk I've taken since surgery. Slowly but surely following along after Jason and Samwise as sticks and pinecones were thrown, chased, and retrieved, I noticed some things:

• Not a patch of snow in sight.
• There are SO many pinecones on the ground.  I began to gather pinecones in the fall and gifted many of them to some of you - carefully washed, dried, and lightly scented with cinnamon and vanilla essential oils.  The broken ones make EXCELLENT fire starters (the whole ones too, but I'm thinking I could start a lucrative cottage industry selling those that are in-tact.  People pay good money, apparently, for a bag of scented pine-cones around the holiday season - I even saw some scented with pumpkin-spice this past fall 🤭).
• The temperature has dropped again. After a few 80°F days last week, it was only 50° by 11am this morning. Still no precipitation in sight, which is concerning as we seem to be slipping into drought conditions once again, and fire-season seems to be upon us already. 
• The walk was pleasant none-the-less as I needed some extra space to clear my head after hearing not exactly what I had hoped for from the doctor yesterday. I only started feeling just a little winded about 1/2 way back.

Some of you are on the edge of your seats waiting for the news from the tumor board, so I'll just get right to it. They believe that I am at high risk of recurrence due to the size of my tumor. Did I mention that  this "atypical lipomatous tumor" (a.k.a. "well differentiated liposarcoma") measured 40.3cm at it's longest point? It must have been doubled over somehow for that to be true, but it is right there in the report - along with the 30-40lb weight estimate.  They are concerned that a recurrence my not be "resectable" (removeable) and have recommended a specialist in liposarcoma at UCSF.  I should hear back within the next couple of days about scheduling an appointment to discuss my options.

This doesn't feel like the "one-and-done" miracle that we had hoped and prayed for, and yet I am confident that God is still healing me.  After latching on so tightly to the hesitant optimism of the surgeon and then the oncologist - both qualifying their outlook with the need for the tumor board to make a final recommendation- I do feel some disappointment/discouragement - and yet I was met with multiple encouraging messages this morning before I had even shared this latest news.

So here we are, still in the waiting period.  The initial description of standard treatment for liposarcoma sounded fairly brutal. Keeping in mind that liposarcoma is fairly rare, I am grateful for the opportunity to speak with a specialist about what options might be available in my particular case.  I am also caught in this limbo of trusting the magnitude of the miracle and the difficult decisions that may lay ahead about treating a cancer that is no longer there.  I don't completely understand this part...do I have cancer . . . or is it fair to say that I had a cancerous tumor that is now gone? When is one allowed to say that they are "cancer-free"?  Obviously, I have more questions than answers at this point and yet I am convinced that uncertainty is where faith abounds.  Trusting a miracle is a dangerous place to play - but trusting my creator, the lover of my soul - that is a safe place to land indeed.

"Let all that I am wait quietly before God, for my hope is in him." - Psalm 62:5

This verse became my daily meditation about 15 years ago - for at least a year, and I return to it from time to time, like today. This is not the first time I am held and will not be the last.  I am deeply grateful for the community of support that has been granted to me. In trimming the flowers brought by a new friend and fellow library volunteer this week, one bud fell off, and I am particularly fond of it as it sits in a repurposed spice jar on the windowsill above the kitchen sink.  As I walked alongside the house this morning - a pinecone fell from the sky, bounced and landed perfectly in this posed position.  It is, and always has been, the small gifts that warm my heart the most and allow me to feel known.  

Well, thanks for reading, for following, for praying, for encouraging me along in this journey - which apparently is not quite over. At this point, in addition to prayers for continued healing, I would ask for discernment as options for the next steps are presented. 

Continuing in the bold confidence of God's care, 

Dawn Noelle

Piece by piece...(Migrated from PostHope - minus the photos)

 As we enter the weekend, I thought I'd share some photos since I actually haven't heard from the doctors on the final recommendation from the tumor board. We remain hopeful that no further treatment will be needed. I've never been a puzzle fanatic, but this gift from a good friend - also dealing with her own medical issues with a prolonged recovery time - has been a helpful practice and metaphor for the slow progress, piece by piece, of healing in my body.  Getting the framework of the puzzle put together felt like such a milestone.  There are days when I look at all the possible pieces and just can't find the one I am looking for to complete a section - and then the next day I find it.  It was always there, but rushing a puzzle just doesn't seem to work.  There are similarities in healing - my outsides look fairly normal but inside there is still much healing taking place. These photos, which I had trouble sharing in my last post, represent the many gifts of friendship, acts of kindness, love, encouragement, and hope I have received from so many. 💕

Love to all of you,

Dawn Noelle

The Magnitude of a Miracle (Migrated from PostHope)

 I get this question a lot.  Up until recently my answers have centered on the physical sensations and energy levels I "feel" in my body. I was not expecting my emotions to be so incredibly muted during this first stage of my healing process. My new answer to this question is...

"I am feeling hopeful."

I met with the surgeon this past Thursday for suture removal and follow-up.  Only 5 minutes before our appointment he had received the pathology report on my tumor and was eager to share some highlights.  He said the tumor was a grade 2 (slow growing) and "well-differentiated" (behaves like normal cells).  Basically this is good news and means that this tumor had likely been growing for "many" years. More on understanding the terminology here. He also said, with cautious optimism, that he thinks I may not need further treatment at this time.  The tumor board meets next Thursday and will make a determination at that time, but this feels very much like an answer to my prayers (and yours) that this would be a "one-and-done" process. 

Keeping in mind that Dr. Alseidi's initial report before surgery indicated that it was unlikely he would be able to remove ALL of the tumor, I am still processing the magnitude of this miracle. 

Measurement, calculation, numbers . . . are not the substance of my language most of the time, but in terms of understanding magnitude, I find the following helpful...

By the numbers:

7: roughly the number of hours I was under general anesthesia / in surgery

39: the number of staples (27) + sutures (12) that held my abdomen together after surgery - now removed (yay!) and replaced by steri-strips, to remain in place until they fall off.  

12: the length of my scar from the surgery incision in inches...stem to stern so to speak (more literally, it starts at the bottom of my sternum and extends down to well below my belly-button)

35-40:  "35-40 what?" I asked when he answered the question "Does the report list how much the tumor weighed?"  He said he couldn't find it in the report at first glance, but having carried it away on a tray, he estimated that it weighed 35-40 pounds. . . . "WHAT?!?!". Yes, that is what he said - and it feels impossible.  I have dropped about 20 lbs. since before the surgery - and according to Dr. Alseidi, patients often gain about 15 lbs. after surgery due fluids during the healing process . . . so I guess this makes sense - and I should prepare for further weight loss as I heal, which is why he encouraged me to push myself a bit on eating a little more.  I've only lost one pound this past week, so I suppose my efforts are paying off.  

2-3: number of months before I will start feeling normal again (though it could take as long as 9). Basically, I'm in for a long healing process. 

30: number of minutes that I can stand or walk before needing to rest. It's nice to be up and doing stuff . . . and don't worry, I am NOT overdoing it. Jason keeps a close eye on me and I have promised to ask for help if I need it.  My only official restrictions are no driving and no heavy lifting. 

The Road Ahead

I had begun to prepare myself, and even entered in to some degree, a grieving process in terms of my loss of function, accentuated by the uncertainty of what I might learn at my upcoming oncology appointment.  Forming a "NOT-to-do" list was affirmed by a post the very same day by Candace McCallister.  I highly recommend her reflections on Caregiving and Grief. With this hopeful news from Dr. Alseidi, however, I have felt a shift and a readiness to focus on healing and gratitude and accomplishing reasonable tasks in the coming days, weeks, and months. I am hopeful that I will, slowly but surely, regain my functioning.  My remaining kidney is strong.  Life without a spleen mostly means that I need to follow a schedule of meningococcal vaccinations and boosters.  My gastrointestinal tract was cut in three places, so eating does cause some discomfort but as I heal, eating should become more enjoyable. And I have learned that diaphragmatic pain does radiate into the shoulders.  The pressure on my diaphragm from the tumor was likely the cause of some significant pain I was experiencing in my right shoulder and bicep before surgery which is now gone.  Now that the diaphragm is healing from some cutting to remove the tumor, it is in my left shoulder where I will feel some sudden sharp pains at times.  The tightening of tissue in my abdomen causes new pains on occasion - but all of it is manageable and feels like signs of healing. 

I feel incredibly grateful for all the support I have received, from home visits to prepared meals to cards and text messages and phone calls and daily scriptures to keep me encouraged.  My father returned home yesterday and Mateo has been here for the weekend.  Tomorrow will be our first day on our own, just me and Jason.  I'm confident we will be just fine and he is caring for me and all that we have been given here at Waypoint well.  I have never felt as strongly as I do now that I can rest in the bold confidence of God's care.  Whatever you are facing, be encouraged.  God is up to something and will be faithful to complete the work that has begun in you. 

I will likely follow-up after I have more specific news from oncology next weekend. 

-Dawn Noelle