Amber’s Story

Site created on October 20, 2019


Hello All!  Amy found this great site for stories like mine and my hope is that I can keep everyone in my circle updated with the latest in what's  going on.  Let me start with how this whole thing began:


During the month of September in 2019 my back began giving me trouble.  I had a tight spot under my right scapula and it seemed that after some rest and stretching it would go away.  I spent about a week and a half trying to take care of it but with my daily chores I felt like I kept re-tweaking it.  I went to have a wonderful massage on Friday the 27th and it seemed to be better as I was taking it pretty easy the rest of that night.  Jon and I watched a movie and I fell asleep like normal still babying that side a bit.  On Saturday morning,9/28 I woke up to pretty intense pain on my right side under my scapula and across my rib cage.  I couldn't raise the coffee pot to pour coffee!  Jon mentioned maybe I had broken ribs but I knew I hadn't done anything traumatic enough to break them.  After looking up the symptoms of broken ribs I started to think maybe that was it.  The pain was enough that I couldn't ignore it or go on with my daily life so I decided to go to the Legacy ER/Urgent Care at El Dorado and Custer as they are covered by our insurance.  When I checked in at 9:00 they took me back and asked if I had chest pain to which I said yes.  Of course, they hooked me up to the EKG and performed the protocol for heart issues and after all that was over, the  doctor (who was EXCELLENT by the way) started to focus on my pain and where it was.  She was concerned that I was having the kind of pain I was having with out trauma of any sort.  She ordered an X-ray and when that came back she came in to discuss the findings of a confirmed broken rib #7 in my back.  She also found a hazy area in the upper right lobe of my lungs she said she was concerned about.  She wanted to do a CT scan with contrast to see the area more clearly and damned if they didn't have a CT machine on site!!  So after having that done I sat for quite a while waiting for the results.  At that point I was in a private room with out distraction so I tried very hard not to jump ahead and get lost in the future.  I used Facebook to kill time as hours went by.  The CT scan had to be sent off site for another Dr. to interpret and write a report.  And then around noon the report came back and my life changed in an instant.  
            She told of 5 significant findings.  First, there were 2 broken ribs, #6 & #7 on my back right side.  Second, there were lesions on the broken ribs indicating pathological fractures,  Third, I had enlarged lymph nodes under my clavicle bone on my right side.  Fourth, there was a possible blood clot in my right lung.  And Fifth, I had a large mass in my right upper lung lobe.  I can't tell you how caring and empathetic the doctor was in such a shocking situation.  She indicated that I would need to be transferred to a hospital directly to do further testing.  The doctor gave me time to my self to absorb the information and make some calls.  Jon had taken Channing to her cheer game and I didn't want to cause a panic with the kids so I called my close friend Jennie who came at once to sit with me while we waited for the transfer.  I also called mom in Lubbock and she got on the road right away.   I was still at the ER when Jon got home with Channing so I asked him to come up alone so I could tell him the news.  I was then transferred to Baylor Scott and White in McKinney on 380 followed by Jennie and Jon (mom met us soon after I checked in) and was tested first for the blood clot and a CT scan of my head as I had a constant headache during the summer for about 2 months.  That came back clear thank goodness as well as the sonogram of my legs.  The next day was 9/27 Sunday and they were able to do their own CT scan with contrast on my lungs, specifically to rule out the blood clot as that was the most pressing issue.  It came back clear, yay!  Small victories:).  After that I had to wait until Monday to do a biopsy on the mass in my lung; the CT with contrast can only be performed on an individual once per day.  So Monday I had the biopsy with CT contrast (to see where the needle should go), easy peasy and they finally released me from the hospital that evening.   It was a long and life changing 3 days and I'm probably still in shock of it all.  I'll list a timeline of events to catch up to now and start updating through the journal entries.  Thanks for visiting and especially for  everybody's help in taking care of us this month  of October especially;  it's been such a crazy, tumultuous time for all of us.  We've gone in and out of shock and denial trying to hang onto little scraps of normalcy where we can find it.  Thank you all for the meals, the prayers and food vibes and the love you send our way.

Newest Update

March 20, 2023

Journal entry by Amber Scott —

Oh Man, HELLO EVERYONE!!!  The old "No news is Good news" has held well over time for me and I am so glad things have been boring health-wise.  Not perfect, but pretty boring until recently...let me fill you in😉

My last post was in Dec of 2021 so I have over a  year to update!  When I left off I was receiving infusions of Alimta (Chemo) and Keytruda (immunotherapy) every 3-4 weeks and life took on a pretty good rhythm.  My energy would wax and wane with the infusions  but I learned to manage it and time things as best I could.  Very livable.  I even went on a sailing cruise with my friend Amy!  It was sooo awesome...10/10!  

Eventually we dropped the Alimta as it was starting to make my cheeks flush and my doc wanted to avoid other side effects that could've been oncoming.  It was a good call!  Being only on Keytruda relieved a lot of the fatigue Alimta caused.  I continued that most of 2022.  But in late October last year I started to have symptoms of colitis that worsened over November and December. Due to loss of appetite and digestion issues, I lost a lot of weight and Dr. Gerber paused treatment until we figured out exactly what was going on and how to treat it.  At the end of January I had a colonoscopy and endoscopy which led to a round of steroids.  February was glorious. 🤣🤣🤣. Energy like I haven't experienced since my 20's but MUCH better life choices. Ha!  I got so much done thanks to steroids, no treatment, no cancer and mom's help!  

I had a scan to see how I've been doing since being off treatment for about 5 months and Mom and I met with my doc to go over results on Feb 27th.  Dr. Gerber said we've got some decisions to make and that not everybody makes it this far.  This perked my ears up.  I've been doing so good sans treatment he suggested just staying the course and sticking to 3 month scans to keep an eye on things. I questioned him about scans and got some clarity about a misunderstanding I've had for some time.  Stable always meant, to me, that there was SOME activity going on which put me in the mindset of living WITH the cancer.  But he said there was NO ACTIVITY ANYWHERE on my scan.  I thought that just applied to the bones on my last MRI but it applied everywhere!  This was thrilling news!!  To me this means NED!  No Evidence of Disease!  So that has taken some time to sink in and I've been re-orienting how I view my cancer.  Do I want to be NED?  I've been living with cancer for so long I've grown accustomed to it being a part of my life as a reminder to live as well as I can in any given moment.  Do I want to lose sight of that?  Will going forward with the idea that the cancer is gone lessen my focus on such an important part of my outlook?  Lots of things are still going on in my head but I have held onto the joy of that day as much as I can.  I've not come out of these last few months without lessons.  All the symptoms of colitis and the suffering it caused lead me to understand how so many people with autoimmune and digestive disorders feel so much of their lives.  My compassion and empathy continues to grow.  

Now that I'm done with the steroids I have average energy but I feel fine and dandy, the colitis did not return thank goodness.  The first week of March we headed to Port Aransas to stay with Jon's sister and her family for a week at the beach and had a great time!  We're back and I'm now contemplating what life could look like and how long-term I'm willing to plan.  We celebrated Garen's 16th birthday and my mom's 70th and my 47th is coming up on Thursday.  Busy, Busy month!   There are lots of opportunities coming up that make life exciting so I think I'll just try to go with the flow and see what sprouts.  

I've been very involved in Healing Circles Global: Living with Cancer and have made beautiful connections with people across the nation and world.  I took the training and am now co-hosting 2 circles which has been so rich and fulfilling.  I've rooted in to other support groups and spiritual groups and feel really good with the connections I've made.  It gives me a solid foundation to handle life as it comes and it always comes, doesn't it?  We've had our fair share of catastrophes over the last couple of years even besides the cancer.  And we're all still here so that's a win in my book.  As long as I'm alive it can just keep on comin! ha!  I'm so grateful to have the time to explore how to relate to the world and those around me.  

Jon's job is starting to take off and the kids are growing like weeds.  Garen is taller than Jon and Chan is up to my eyes.  Spring energy is in the air and I've started seeds for a garden so I'll be planting what comes up.  

I hope joy and abundance touch your life this season and I hope I can continue to have "no news" for you.  

Take care of you and yours,

Amber🥰

 

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