Round One…Tysabri

Finally, all the moving pieces required from the wonderful world of managed care, aka, Capital Blue, (required appointments, lab work, precertification for specific infusion center, and my medication) I was cleared for my first infusion of Tysabri!  

It’s been several months of uncertainty, doubt, fear, and yes, why me? Why do I have to endure this progressing?  Why do my everyday tasks, like showering, getting dressed, cooking, and household chores take forever? Is this ever going to get easier, Lord? I’m really so sick of being sick!

One of my biggest adjustments has been having my license revoked. I understand the why, but I needed to mourn and live with another loss of my independence. It was time to gracefully accept help from others. This was difficult for me.  I always enjoyed helping those in need, not reversed. As my BFF is quick to remind me, “Don’t take away the joy from those who want to help you.”  Ugh!  Does she have to be so right?!?

Hubby and I feel so very blessed with the overwhelming offers of help for transportation, meals, shopping or anything we might need. The love, support, and care we receive from our family, friends, and church members has been amazing.  I can see the peace overcome my hubby as well. He can go to work knowing I’m in good hands. Priceless for me!

Of course, the first date available to begin treatment, hubby had to attend a mandatory conference for work.  I really wanted to start treatment asap and hoped he didn’t mind not being there…he agreed!  Yes!!! Today was one of those days where my newfound friend from church, Allie, could take me for my first infusion.  

We arrived at the infusion center, checked in, and patiently waited for my turn.  I found myself nervously smiling as I glanced around the jam-packed waiting room. I struck up a conversation with Grammy and Grampy sitting next to me (imagine that).  “This is my husband’s first chemo visit,” Grammy shared with a smile.  “We’ll be “infusion buddies!” An instant bond was made!  They called my name.  I quickly told Grammy and Grampy, “I won’t say good-bye, rather see you later!”

I was taken back to the infusion area.  There I was greeted by my nurse, Pamela, who quickly seated me in a comfy La-Z-Boy type chair, complete with seats for my family, a TV, snacks and drinks of all kinds, and plenty of room for her equipment and meds. She made me feel comfortable and eased my nervousness!

Pamela inserted the IV into a vein and was ready to administer my first infusion of Tysabri. I quickly turned my head to look out the window.  She asked, “Are you okay?”  “Yes, just can’t watch!”  She chuckled and carried on sharing her routine information.  “The actual infusion would take one hour and we will keep you an additional hour to watch for adverse events or allergic reactions (skin irritations, heart issues, dizziness, migraines, to name a few.)”   

file_000-2Like any MSer, you can take a nap anywhere, anytime, and so I did. That’s when I heard a voice, “Excuse me?”  I promptly opened my eyes, and there he was, hubby!!!  Was I ever surprised!!!  He came to visit during his lunch break and brought me a bonus snack…a dark chocolate, sea salt candy bar!  As he knows oh so well, everything is better when chocolate’s involved! Love this man!

My medicine was infused, my hour of observation was complete, with no adverse events or allergies noted! Pamela removed the IV, scheduled my appointment, and provided discharge instructions all with a smile.  “You have no limitations…go home and enjoy your day!” “We’ll see you next month!”

I did it!!!  Really wasn’t that bad after all!  With a few more infusions, I should be able to see if Tysabri is working.  I keep a daily journal to record my physical status, accomplishments, and monitoring of my symptoms: are they stabilized, improved or worse? Paints a clear picture for my doctor and me through this treatment.

Counting my blessings for this option to try.  God remains oh so good!

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13 Comments

  1. Thank God for good friends! Sending you wishes for strength and happiness in this trying time, and beautiful thoughts on which to float.

    • Indeed! Thank you for your kind words and message! Enjoy your weekend!

  2. You go, girl! I’m sorry your license was revoked – I voluntarily gave up mine shortly after giving my car away – it was weird. God continues to bless his sick girls, and I’m so glad your church family has surrounded you, offering rides!

    The very best part of the blog was your wonderful surprise! That’s something my dad would have done for my mom! You’ve got a great guy there!

    • Susan, your message made me smile! We are blessed for sure…even with chocolate! Enjoy your weekend GF! xo

  3. Chris Spaeder

    Way to go Cath, I’m so glad things went well today😇😇

    • Thank you Chris! One day, one infusion at a time! Enjoy this beautiful weather!

  4. So glad you have something to try – praying for good results!

    • Thank you! Time will tell, it’s in His hands for sure! Hope you’re doing well!

  5. So glad to hear there were no adverse affects.. and that you have so much support. It would be hard to lose your licence but as you said there are many who are willing to help you. Take care Catherine… thinking of you and remembering you in prayer! Diane xx

    • Thank you Diane! You’re the best! xo

  6. Jil LaCroix

    Hi Cathy you are an amazing testimony. A testimony to Gods love , grace and peace that passes all understanding. My prayers are with you. Hey I think I have the privilege of knowing your bff. Would be nice to meet you sometime and share and pray. Love Gilda xo Brendas friend

  7. Jil LaCroix

    Praying for favorable results and a long lasting remission!

  8. Thank you Cath for sharing about your Treatment, none of us know what tomorrow will bring, not that we worry needlessly that we will have the same road to walk as others do but it’s good to be prepared, knowing takes the fear away when we do encounter the unknown.

    It’s is indeed wonderful Cath how God sends caring People to help us, yes sometimes we need to be humble and ask for help but He provides the Motivation for them, a Kind and compassionate heart is a Loving heart and yes like you feel, it wants to be the giver not the taker but Cath you gave to Grammy and Grampy, you offered your friendship and you have given to us by sharing honestly your feelings and the ups and downs that you experience and these have True value.

    I understand the loss of independence Cath with not being able to drive a Car, Ron took the Car keys away from me, it was a blessing for everyone including me but as a plus point, I was a very good Evangelist, even Atheists were praying for Mercy at the end of a ride with me -Lol

    But seriously Cath there are other options in our motorized world, I find my Mobility Scooter a real blessing which I Thank God for, without it I would be very limited, it has also given me the opportunity to reach out to others who are disabled and to witness about our God of Love to them and to others.

    Keeping you in Prayer – Christian Love – Anne.

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