Just Breathe….

December has been a mixture of precious family time and making beautiful memories together and just sadness.

My most favorite moments this month have been in the calm, in the quiet, in the together.

God overwhelming blesses us. I can not and will not deny that absolute truth but I feel like I can’t catch a break, a true time to breath without something bad happening. I hate feeling like I’m in wait mode each day. It makes me truly sad. This makes me less patient with my children, less able to enjoy this season and all the joy within it.

Continued faithful prayer….and remembering to just breathe….is how each day looks.

We began December with a yummy, fun family cookie making Sunday afternoon.

That same Sunday morning I was awokened while moving in bed by pain in my right shoulder and chest area. There was a warm, red, painful area all around my portacath site. I had no fever and was already on antibiotics, my 4th round, for a UTI that will not go away. So I didn’t feel a trip to the overcrowded, germy ER was warranted. We continued on with cookies.

With the pain and redness definitely not subsiding on Monday, I gave my oncology nurse a call. My doctor wasn’t in but another was and agreed to see me. Blood was drawn, cultures done, thankfully. I was sent home with another antibiotic for a skin infection to add to my UTI one.

Life continued with school and our homeschool gingerbread house making day.

We are all beyond thankful for everything to be open to us this year, for a more “normal”. Our children have been so excited for all the special events.

But normal life stopped with a Thursday phone call to come into oncology, my infection needed to be seen, my doctor was in.

When my husband and I arrived my oncology nurse, whom is amazing, wonderful and goes above and beyond to take care of me, said she would call the lab to get blood drawn to see what was happening. I quickly remindeded her that the lab staff does not do blood draws on me, that oncology staff use my port. Her reminder that my port was infected and couldn’t be used brought a sudden rush of complete panic over me. I caught her completely off guard with my swift adamant refusal to have any attempt at drawing blood and the flood of tears that followed. She, thankfully, listened to me.

With all that I’ve been through, all the pain I’ve endured, some of you may be wondering why a simple blood draw would cause such a reaction. My portacath has been my life line for almost 2 years now. It has allowed pain free blood draws, chemotherapy, dye for my CT’s, anesthetic for tests, infushions of blood, iron, Zometa etc. This has been an indescribable blessing. Scleroderma not only causes my skin to harden, it causes all the blood vessels in those affected layers of skin to shrivel and shrink away, making them pretty much non-existent. This is what causes my inability to regulate my temperature. Also, even though hardening and decreased blood flow are happening to my skin, it is extremely sensitive. So searching and digging for a blood vessel is EXTREMELY painful. My last arm blood draw was in February 2022, it was extremely difficult then and I’ve had extreme progression in my skin since then. My body is so tired of pain, the sheer thought of digging for a blood vessel, is just too much to fathom.

Pseudomonas, a sticky, resistant to several antibiotics, life threatening if it travels to other major organs, bacteria is what was found in my portacath cultures. My port had to come out, that very day. My infection had ruptured my skin, opening it up so my port could being seen. Being exposed to air and never being able to ensure the bacteria was cleared from the port, it had to be removed.

I was heartbroken. A lifeline, that kept me pain free and easy to access was gone without any time to even mentally prepare. Thankful beyond words for the health care team God surrounds me with. Doctors and nurses that care so deeply for me. They talked to me and explained everything until the fear was calmed, I fully understood everything and could move forward in trust.

For God has not given us a spirit of fear, but of power and of love and of a sound mind.
II Timothy 1:7 NKJV

CAUTION : REAL PICS AHEAD!

This was not how December was supposed to look. At my last oncology appointment, at the end of November, I was so excited to be stable, taking my new meds, no side effects from them, next appointment early January. A whole month of relaxing and enjoying my family without something medical needing attention. Evidently this was not God’s plan. Taking strong antibiotics and daily VON visits became my norm each day.

A man’s heart plans his way, But the Lord directs his steps.
Proverbs 16:9 NKJV

Even though we’ve spent lots of time relaxing at home, watching lots of Christmas movies, I have still gotten to enjoy so many things this month…..and I am SO thankful!🥰❤️🎄

Our homeschool Christmas party (I didn’t get one picture taken 🤦‍♀️), 4-H Christmas party and our church’s nativity gingerbread party.

Christmas tree hunting, Frost Park and family pizza party.

Our 24th wedding anniversary, my 45th birthday and one of our children’s birthdays.

In person Christmas Eve candlelight service and Christmas Eve Brunch, when we do the highly looked forward too sibling gift exchange.

For with You is the fountain of life; In Your light we see light.
Psalms 36:9 NKJV

Christmas day and supper together.

It was just after Boxing Day 2020 that our friend and family doctor called my husband and I into his office to share my stage IV metastatic breast cancer diagnoses. We have no idea what year 3 will look like, what God’s plan for 2023 is for our family but we do know that no matter what, no matter how hard things get, how discouraged we may be that THROUGH IT ALL, our eyes continue to be fixed on HIM!

Each day is a gift, each year is a gift. May we all treat them as such!

Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.
James 1:17 NKJV

Thank you to those faithful prayer warriors that continue to keep us lifted. A PICC line is scheduled to be placed January 4th, please pray this goes smoothly with no infection and I’ll have a new easy access point. A new portacath is a very unlikely option in the future. Thank you to everyone that provided yummy meals and treats for us during the busiest of seasons. Your love and care for us is tangibly felt and appreciated.

Happy New Year to all!