Okay, so yesterday wasn’t the best day, but so far today is going much better!

Jonathan and I arrived at Vanderbilt at 7:30 am yesterday morning.  I had labs drawn, a thorough appointment with my Lymphoma specialist to go over the week’s plan, and then headed onto radiology for my PICC line placement – the IV needed for 5 days of chemo infusion.

After the PICC line, we were checked into our beautiful suite-like room. It is really state-of-the-art minus the telephone (see the picture.)  They had to check my heart before the chemo, so I was taken to the 1st floor for a MUGA scan – which checks heart function.  That was a long process, but it got even longer when it was time to head back to my room.  I was warned that “transport” was way behind on moving patients around, and then I was wheeled out into the hallway with a miniature-sized Sprite in hand.  It felt like I was out there for an hour. It was a busy hall and I saw many people passing by.  As each passerby approached, I had to choose whether to acknowledge them or stare at the very small can of Sprite.  I often tried to nod and smile, sometimes I said “hello”, but I can tell you all of the ingredients in Sprite, where it is canned, and what ingredient is responsible for the 2% of your daily allowance of sodium.  🙂 Finally, the kindest man rescued me to take me back to my room.

A little while after settling into my room, my Lymphoma specialist walked in.  She said she was here for a reason (her partner is supposed to be making rounds).  She told Jonathan and me that there is a nationwide shortage of one of the drugs I need, and I will be unable to have it. She had already ordered it twice that day for other patients, but when she ordered it for me – it was out! What? Does this happen? No. This is very very uncommon.  So we had three choices. Don’t start treating. Omit this drug from the prescribed regimen. Or substitute with a similar drug that’s never been tested in combination with the other ones we will be using – so we don’t know the side effects.

What? We were in shock.  Jonathan said, “I feel like we’re about to fly in a Jet and we have to choose which fuel will fly the plane.” Yeah, that’s what it felt like.  We were flabbergasted.

We took a deep breath, said a prayer and called my cousin who is a pharmacist (thank you, Jenise).  We knew we needed to get on with treatment – I literally see the daily growth on my face.  So to omit or replace?  The doctor can’t ultimately decide for us.  We had to sign a consent form for our choice (and the pharmacy needed our order by 5pm if we want to start treatment today). Between our doctor’s advice, my cousin’s advice and a peace within us, we decide to replace with a similar drug (it has been used for 30 years, just not in this combination.)

We finally began the infusion at midnight.  I did fine.  I had some severe restlessness and agitation from the pre-meds of high-dose prednisone and benadryl, but otherwise I can’t complain, and there are drugs to counteract those effects.

I couldn’t ask for kinder, more attentive staff.  Jonathan and my Dad independently asked me today if my eye was opening more – and indeed it is!  Jonathan and I, and my family have even wondered if this medicine substitution isn’t a “God Thing”?  What if this is the best treatment for me?  You never know!  Maybe it is! This whole thing has been covered in prayer by all of you – down to the last detail!

As I said, today is much better.  I’m handling the treatment well, the kids are getting great care from Jonathan’s mom, and our faith is unshaken.  As we drove to the hospital yesterday, the song below was playing which is one of my favorites.  Good motivation to get this going and begin the fight.