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