Reality Check and Rebound

I failed to actually publish this post back in March. I have moved my health updates to: CaringBridge

So, it's been a couple of weeks since my surgical oncology appointment.  I meet with the medical oncologist online and with my surgical oncologist in-person after every scan, every 3-4 months.  I had been feeling the best I've felt since my first cancer diagnosis in 2021...and my bloodwork reflected the same.  I was approaching my oncology visit with a fairly "happy-go-lucky" attitude, given all the recent good news as of late.  My understanding had been that the most likely event that would trigger the need for surgery would be an obstruction in my intestine as the latest scan, though growth has slowed, does indicate a "possible mass impact" on my colon.  The surgical oncologist clarified that it would not be good to wait for an obstruction and that surgery under those conditions would not be optimal.  Additionally, it was reemphasized to me that surgery would be like "cutting an egg out of cement" given the scar tissue from previous surgeries. Along side this statement, the doctor's perspective is that it is not a matter of "if" but of "when" I will need surgery - and depending on my upcoming scans, we should begin planning on surgery, possibly even this year. 

So, those are the facts. The facts most certainly put me in a bit of a funk for about a week. (A 2 hour conversation with my son at the end of that week really helped to pull me out of it.  🥰) I really DON'T want to go through another surgery. It seems like it has taken me three years just to recover from the first surgery.

But facts are overrated.  The TRUTH is that I still believe God is healing me. I need your specific prayers that God STOP the growth of the tumor and even that the tumor would begin to shrink.  We are in a good place with our Waypoint Ministry, moving toward 501(c)(3) non-profit status.  Taking another break for surgery is not really in our plans at the moment. 

However, IF the need for surgery does become evident, I do trust that God will carry us and do His work through it.  I continue to swim twice per week, take care of what I eat, and even have taken up intermittent fasting once again.  I do these things with a mind toward preventing another surgery...and the doctor's affirm that all of this is good (in their mind to keep my body strong and be in the best shape possible for my body to recover from surgery).  

Either way,  the facts and the truth can often seem at odds.  But I'm back to living life and enjoying God's blessings and especially the fruit of our labor here in Rail Road Flat.  

Thanks for following my journey - mostly THANK YOU for your prayers.  

In the bold confidence of God's care and the joy of God's good gifts, 

Dawn Noelle

Trial Run

 I have some good news!  As I work with my new GI doctor to monitor my liver while adding supplements back into my diet and health regimen, my first batch of labs came back with the most positive results I have had since my cancer diagnosis in 2021.  The only levels that are high are "monocytes" which basically means my body is fighting something.  I am also feeling the best I have in a long time.  I thought I'd go ahead and take this opportunity to see if my updates on this platform will get to you!  Let me know in the comments.  If this doesn't work, I may just continue my updates in our Waypoint newsletter. 

Cancer is just a thing. (Last Migration from PostHope)

 Has it really been since February since I last wrote an update?  PostHope has gone through some hiccups since that time and it would seem that all my previous posted photos were lost. It looks like the journal entries are in tact, however, and for that I am grateful.  So, let me update you:  Tumor growth really accelerated between February and May in 2024, triggering a referral to the surgeon. He gave an incredibly visceral description of what surgery would be like given my 2 past abdominal surgeries (a c-section in 2000 giving birth to my twin sons, and the removal of my tumor, spleen, and left kidney exactly three years ago today in 2022).  Cutting through the "obliterated tissue fields" would be like "cutting through cement" he said.  Yikes!  Not really something he is eager to repeat given that my particular type of tumor (liposarcoma) has a tendency to grow back.  Of course,  if it were to grow too quickly, he might recommend surgery, but the trick is not operating too soon and not waiting too long. You may remember that there are not any good chemo or drug therapies that have proven effective for this rare type of cancer, though there are some studies being done utilizing drugs that have been approved for breast cancer. Having met a woman who had experienced some success with her own breast cancer using an alternative treatment (Rick Simpson Oil, or RSO for short), I discussed with my doctor the 90-day protocol and she wasn't strongly opposed so I gave it a go, wanting to do everything within my power to prevent, or at least delay, another surgery for as long as possible.  Along side this treatment, I tried some new supplements, continued with my "targeted prayer therapy", in particular a little book of scripture based prayers called God's Creative Power for Healing by Charles Capp and adopted 3 "battle songs" which I played and sang regularly. There is something about the vibration of the guitar so close to my abdomen that I really am convinced have a healing effect. By the end of August, I had lost 30 pounds and was experiencing acute liver injury (ALI). My oncologist advised me to stop ALL supplements at that point, including the RSO. The good news was that the tumor growth had slowed down, and my liver enzymes came back down to normal levels fairly quickly after stopping treatments and supplements. My weight loss didn't plateau until November but my energy levels have continued to increase since that time.  In the absence of even a multi-vitamin, I began juicing to be sure to get as much vitamins in my body as I possibly could and have continued swimming regularly and even manage to squeeze in a floor exercise routine now and then.  In October I met with a rheumatologist given that NSAIDs are no longer an option for a person with only one kidney and now with a liver injury acetaminophen is ruled out as well. Dr. Shibuya (he has a YouTube channel if you want to look him up) was a breath of fresh air.  He is very affirming of lifestyle changes I have made to keep arthritis pain at bay in the absence of meds and he had hope to offer even if he couldn't prescribe, cut, zap, or inject me with anything to make me all better.  In late December I finally got in to see a GI specialist who is overseeing my return to supplements (one per month starting back on my multi-vitamin first) and will order regular liver labs to be sure my levels stay normal.  There are some supplements that I probably won't return too.  Anything with green tea extract, for example, is not recommended due to my ALI.  The best news is that my latest scan (December) shows that tumor growth has slowed EVEN MORE.  This doesn't mean that it's shrinking (yet 😉) even though that is what wishful thinkers sometimes here when I say that "growth has slowed".  In retrospect, even though the RSO is most likely what triggered the ALI - though it could have been a combination of the supplements I was on, the experience seemed to "re-boot" my body and has given me renewed strength to fight the cancer, which really is "just a thing" I live with now.  One new thing I learned from my last oncology appointment is that some of my gastro-intestinal difficulties could be caused by a possible "mass effect" on my sigmoid colon.  This just means that I need to keep eating well (specifically to keep things flowing) and that the most likely event that would trigger surgery would be if the tumor were to press into my colon and cause an obstruction.  Those are the facts but the TRUTH is that YOUR targeted prayers can help to keep that at bay.  In fact, my oncologist even wrote that I am "maintaining a healthy lifestyle through diet, exercise, and prayer".  

So,  unless something big happens or I am struck with inspiration, I will likely default to yearly updates.  This "surgery anniversary" seems like a good date to aim for each year.  In the meantime, We will be looking into 501(c)(3) status for Waypoint in 2025, so stay tuned.  We haven't sent out a newsletter since Fall of 2023, so be watching as we hope to get one out by the end of February with updates on life at Waypoint.  

In the bold confidence of God's care and the the joy of God's good gifts, 

Dawn Noelle

The thing with feathers (Migrated from PostHope)

It was said to me recently that there are "no words" for what I am going through.  My immediate reply: "Oh, there ARE words." I was a little surprised at myself having just recently shared here about feeling "tongue-tied", having grown weary of the asking and the answering of the question "How are you doing?"

Though there are certainly unspeakable horrors in this world, often the words that do exist are just too hard to utter for fear of reinforcing their reality.  Sometimes, however, saying the scary part out loud actually dissipates the fear-invoking power of the reality we are facing. 

I realized last week that there is a word scarier than the "c-word" when it comes to cancer.  In reading through CT scan reports the words "no sign of metastatic disease" is always a huge relief.  The "m-word" in all of it's forms can be devastating as we learned with news of metastasized prostate cancer in a friend recently. There is more heaviness than hope as our friend faces into this next phase of his journey and treatments, and yet that is the very nature of hope. Is it not?  Hope is not heavy. Emily Dickinson writes:

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

When there are "no words," hope remains, like a birdsong. 

Hebrews tells us that faith is the SUBSTANCE of things HOPED for which brings me to another, more substancey "m-word" that God has given me to contemplate in this season. MANNA. The following is from a collection of Thought Seeds for Every Day of the Year, a book sent to me by friends from the Brüderhof and publishers of "Plough" magazine. 

"Manna - strength from above - is given us only for one day at a time. You only need faith for today. So don't allow yourself to worry about whether you'll have strength for what might come after that. No day is alike, and you yourself change from day to day. Joy in life and courage are not constant either, but come and go. Thank God, his mercy is new every morning, and his manna - the dew of the Holy Spirit - falls and refreshes our souls again and again."  - Walter Hümmer (co-founder of the Christusbruderschaft Community in Selbitz, Germany)

I've always thought of manna as a light and airy substance. As a little girl, I imagined manna to look exactly like the tiny little square communion bread offered once a month at our evangelical church.  CANCER and METASTASIS are indeed heavy words when weighed against "hope" and "manna". These latter words cannot outweigh the unspeakable horrors of this world as their very nature is not to "weigh in" but to lift up and to give us strength to rise above. HOPE and MANNA can lift us up and out and above our circumstances - like a rainbow in between the gales of the storm. The remainder of Dickinson's poem may resonate strongly with other Californians in light of recent storms we have experienced here on the west coast.  I've included the whole poem below, along with a picture (3 actually) of the rainbow God sent my way this week - truly the brightest I had ever seen. 

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

 

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

 

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

Living life...tongue tied (Migrated from PostHope)

ABEMACICLIB. Can you pronounce this word?  I find it difficult, even after repeatedly listening to the computer generated pronunciation provided by the National Cancer Institute website. My mouth is not used to making these particular sounds in this particular order. This is unchartered territory which leaves us a bit tongue-tied.

Perhaps this is a good metaphor for how we are sitting with the news of tumor growth that was more than what the doctor would have liked to see. We are not used to walking these particular steps in this particular order and have been less enthusiastic to share what feels like non-news (cat got your tongue?). There is a drug (see above) typically used for breast cancer that might help to slow the growth.  We are looking into this but have not yet made a decision.  

I will have another scan in 8 weeks.  It seems best to postpone surgery as long as possible. At the moment there are no organs in danger of being affected by the tumor and in general I am feeling fine. There are no signs of metastatic disease (spreading to other parts of the body). We can count these facts as 2 pieces of good news.

Another piece of good news is that we now have the opportunity and a time frame within which to focus those targeted prayers on shrinking this tumor away to nothing. I appreciate you, who continue to read, as this is a long-haul kind of prayer commitment. I have been particularly blessed by the offers of 2 friends to join me in a spiritual fast for my healing alongside my own intermittent fasting, giving my body some time each day for the work of healing without the distraction of food to be digested. 

I am mostly focused on living life between scans at this point as we stumble through this unchartered territory. I even stumbled upon a conversation with Jesus after asking Him if a particular household item might last for the rest of my life.  *Well, how long do you want to live?" came the response.  I was encouraged by the opportunity to tell Jesus that I would like to live long enough to see my grandchildren grow up, no matter how many household items need to be replaced in that time. To be honest, I'd never thought about articulating the desire of my heart in terms of life-span.  We don't necessarily get to choose, but we do get to ask. 

Thank you for your continued prayers as we cling to the miracle working, healing power of Jesus, living every day, not as if it were my last but because I have my whole life ahead of me. 

In the meantime, we have been so blessed to have Rubén, Mateo, and Kaleigh here for a visit, including a magical walk through "The Wardrobe" on our Narnia trail covered in a blanket of snow. 

In the bold confidence of God's care and the joy of God's good gifts, 

Dawn Noelle

Here with the power to heal now and the grace to forgive (Migrated from PostHope)

I believe that You're here now, standing in our midst, here with the power to heal now, and the grace to forgive. 

Maybe this stanza is familiar to you.  It was written by Marc Nelson in 1987 for Mercy/Vineyard Publishing.  You can listen to it here. 

As Jason led us in worship last night, the truth of God's power to heal and grace to forgive rang truer than ever for me in this time of waiting for CT scan results and follow-up oncology appointment on January 8.  

Since our time of rejoicing at the "no new growth" news in October, it is tempting to look back to evaluate my own efforts to stay the course:  intermittent fasting, sugar and simple carb restrictions, preparing healthy meals for myself with cancer-fighting ingredients, believing and proclaiming that God is shrinking this tumor, daily praise and worship with my own guitar.  

Some of the above I have done well with, some so-so, and some not so well.  So it is comforting to be praying for a positive outcome along with the reassurance of God's power to heal and grace to forgive where I have fallen short. 

So we did get the CT scan result this morning - which does show some growth but we won't know much more until my appointment on January 8.  The kids will all be with with us for a visit at that time. (I LOVE being able to say that I am a mother of 3 since Mateo got married last July!) 

In the meantime,  keep up the prayers.  They are much appreciated!  

In the bold confidence of God's care and the joy of God's good gifts.  

-Dawn Noelle

No New Growth (Migrated from PostHope)

In terms of cancer, "no new growth" is a very positive phrase to hear.  I am happy to report that those targeted prayers that so many of you have been praying on my behalf seem to be working!  The mass was measured at 4.2 X 7cm this time around, which is actually an overall mass SMALLER than the measurement from my August scan! The PET scan showed very little activity in and around the mass (less than my liver, in fact, whatever that means).  My oncologist believes that this is almost certainly a well-differentiated, slow growing liposarcoma (that's a clickable link for those of you are new to this journey).  This is what was removed from my abdomen back in January 2022 along with a faster growing, "dedifferentiated" portion that was encapsulated in the slower growing stuff. Given my history - a biopsy doesn't seem necessary.  We are also opting for observing this tumor rather than surgery at this time.  Often times these types of tumors just grow back and unless it is growing quickly or there are other health-risks or severe symptoms that are otherwise untreatable, the risk of surgery outweighs the benefits.  Currently my only real symptom is some pain in my side which is fairly well managed. With a twinkle in my eye I asked the doctor if she had ever seen a tumor like this shrink on its own (knowing that I have a pretty powerful prayer force in play).  She said that she has seen these tumors stay the same size for up to 10 years.  So, I'm excited to see if this mobilized prayer force can shrink this tumor even more! This continued "targeted prayer therapy" is especially coveted knowing that even if it begins to grow, the current drugs available only have a 10-15% success rate with this type of cancer.  At this point my doctor does not recommend any drug therapies. 

They did find some activity in my thyroid which they will follow-up with an ultrasound, but the doctor isn't too worried as thyroid nodules are fairly common.  Given my family history with thyroid cancer, however, I would appreciate prayers on this front as well and will keep folks posted here, but I'm not really worried about this for now. 

Other than the ultra-sound for my thyroid, we will follow-up with a CT scan in January.  I hope to post some reflections that have been brewing soon, but for now I wanted to get the good news out and to THANK YOU for all of your prayers, giving glory to God, my maker and my healer.

Also, to let you know that fall has set in here in Rail Road Flat.