February 24

 

“The world ain’t all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t how hard you hit; it’s about how hard you can get hit, and keep moving forward.” – Rocky Balboa

February 24. Where is time going? It's surprising that as long as the days have seemed this year It has only been one year since surgery. Tomorrow marks one year since they removed my Thymus. I'm not going to lie- it was borderline kind of cool at the time that they found this crazy rare tumor they removed it and everything returned back to normal. No one expected all THIS.  

Let's start with good news, 

Good News...... my liver has rebounded back into the normal range! Which means we don't have to worry about stopping Samsca early. Annnnd I can drink wine with less reservation!

Good news......My spirit is healing. My anxiety is lessening.  I am sleeping better. A friend offered me some really great advice..... “Honoring wherever you’re at is 100% more than okay.”—— that advice has helped me accept what I am feeling every day! I am blanketed and comforted in love and support and prayers from so many. I am seeing all the messages, reading all the cards and listening to all the songs you have sent me for strength. If I haven’t said it enough- THANK YOU!

Good News...... Jenny came to visit! I got to show her all around The Mayo Clinic and the exciting city if Rochester! It was finally out of the negatives when she was here so she missed out on the bitter eye lash freezing cold. We did some shopping of course and We had a lot of good laughs, good wine and a lot of good tears. She is with the kids now as my parents returned to DE for their second COVID vaccine. With no return flight scheduled to Washington State Im hopping she will still be around when I get home.

Good News..... The beauty of technology has kept me feeling connected to everyone at home. Zoom prayer group, and FaceTime make it seem like I am not so far away. Seeing the kids, family, and friends daily just warms my heart.

Good News..... So many people had been inquiring about where to get a Zebra shirt so a friend of mine designed one! She is a VaBeach artist and man did she do a great job! (The zebra below is her awesome creation) It was a huge surprise. She incorporated the Italian mountain range we climbed three years ago in the mane of the zebra as well as the reflection of the ocean in the sun glasses. She thought it would be a great way to have something special out there for the people that asked. We can not believe that almost 320 people purchased one!!!!!! How amazing is that! Also, my work family jumped on the zebra train too and got zebra print scrub tops to wear on Mondays!!!! See pic below.

Here is the update..... it's boring here and its a waiting game. End of story. Just kidding. 

This is so mind blowingly confusing ---- currently we are Trying to decipher  when my brain will take back over the control of ADH production because right now its the cancer producing it so the brain is, well, shut down.  

Once the "tumors" are controlled then the brain will start doing its job again..... hopefully. Right now the sodium medication (Samsca)  is controlling the production of the hormone secreted by the "tumors'' so the brain is just straight chillin. The brain will only kick back on if the tumors get controlled by injection. And round and round we go.🤪

Dr Natt and her colleagues met last week prior to my appointment on Friday. Let it be known They had to break out a dry erase board and really work hard at coming up with a plan. She also met with Dr Dimou this past Monday about getting another PET in the next few weeks and when to start testing the efficacy of Sandostatin. She hopes to contact the SIADH specialist at Georgetown (the one she was going to try and get me to see last year) to run everything by him as well.  We have an appointment today (Wednesday) with Dr Natt and it sounds like she is planning on weaning of the Samsca this week BUT will want me on sodium tablets and urea powder as cushion. We will know more later. Stay tuned.

In the meantime.....Sodium update:

Initially my sodium shot up to 144 and on Friday dropped to 140 it has managed to stay there over the weekend and was 140 Yesterday. Although it is GREAT that the levels are not dropping it is a negligible sign because we do not know if its the Samsca or my brain but we also know its not getting worse, so there is that! 

I will see some of you at prayer service Friday..... It always gives me something to look forward to ☺️ Please pray that coming off the Samsca will be uneventful and that the Sandostatin injection is working. 

Also I ask we pray for my mind to be at peace. The body feels everything the mind thinks which has been a great struggle for me this time.