Sliding In Under the Wire

Wow!  What a ride this has already been!

Wednesday, my mom drove me to MD Anderson because it was going to be my short day, and I wanted her to get acquainted with the drive.  I was just going to sign my consent papers.  Should have been in and out.  However, a meeting snagged my doctor and the wait expanded.  Mother and I spent the time going over all that Paul and I had learned in our classes and thinking through a daily routine for once I’m admitted.  The time passed quickly.  When we were finally called back, the exam room wait was equally long.  Unsure of what was going on, we nibbled on cheese crackers that mother had thankfully packed in her purse.  When a frazzled Dr. Shah finally joined us, she apologized for the delay and told us what was happening.

My protocol is part of an international study.  We had actually researched and hoped to be a part of this study since last fall.  Since my situation has been so unique, we thought it would be useful to have it all documented.   One of the requirements was to have been off chemo for at least three weeks.  The timing of my conditioning chemo, the donor’s harvest, and my transplant had all been based on that.  However, Dr. Shah had just learned that the head of the study had recently changed the requirement to SIX weeks post chemo!  No one at MDA had that information.  It wasn’t on the web version either.  So she had to frantically start working to get an override.  But the head of the study was currently in Europe somewhere and asleep at the time we were busily awake!  She apologetically asked if we could come back early Thursday morning, before my scheduled 10:30 Rituxan appointment, to sign consent papers.  Certainly by then all of this would be worked out.

Shortly after 9am Thursday, Paul and I arrived at MDA and made our way back to Dr. Shah’s waiting area.  After a bit, her nurse, Cathy, came out and said that the doctor was still working on getting the signatures.  Everything was looking good, but it was going to take some time.  We were free to leave the waiting area knowing that she would call and let us know when to come back.  So we took the time to get to know more about the place that I was about to call home for the next month or so.  We discovered that the 24^th floor of the tower where my room will be is an observation area.  Huge windows looking out across the city in all directions surrounded the entire floor.  There were couches, chairs, and tables where folks could sit, relax, do crafts, etc. 

Next we went down to the 17^th and 11^th floors to see the transplant areas.  Half of the 17^th has recently been added because of the increase in transplants.  It’s newer and the rooms are a bit larger.  The 11^th floor is the original transplant area and where the exercise classes and music therapy takes place.  I learned that even if I were assigned to the 17^th, I would be allowed to go down to the 11^th for those activities.  A sweet nurse on the 11^th gave us a little tour and answered a few questions.  Amazing team of people!

We walked back over to B-8 (you get around MDA by elevator bays and floor #’s) to see if there was any word.  Cathy came out and said that things were moving along but we would have time to go get lunch.  So we trekked across the skybridge to the Mays Clinic where the café has an outdoor eating area.  The surroundings were very nice and relaxing, but you have to be careful on your food choices when eating at a hospital.  Some things are ok.  Others, not so much.  We’re learning.

After that, we toured the Duncan Bldg, where Paul’s orientation would begin shortly, and wandered through an excellent exhibit describing the history and purpose of MDA.  We then took the tram back across the skybridge (I was getting a little tired), and Paul left me in Dr. Shah’s waiting area while he went back for his orientation.  About 2:30, Cathy came out to update me on the situation.  Dr. Shah was still hunting down two more signatures.  She was concerned that it could take until 4pm.  While the wait wasn’t the problem, 4pm was the cut off for getting the Rituxan orders to the ATC (Ambulatory Treatment Center).  She couldn’t send the orders until she got the signatures.  If I missed getting Rituxan that day, it would negate my entire transplant timeline!  I immediately dropped in prayer…after texting Bethany and asking her to join me.  I saw later that she had also Facebooked the request as she was sending up her own.  Within TEN MINUTES (is God good or what?!), Dr. Shah was in the waiting area frantically searching for me.  Our eyes connected and she ran me back to the exam room, spit out the pros and cons, asked if I had any questions…no…and we signed the consent.  They took a little more blood, for another aspect of the study, while Dr. Shah handled the last snag.  Since I missed my 10:30 appointment at the ATC, they had to find a room for me that would be available throughout the evening.  By the time the blood was drawn, we had confirmation and they scooted me on my way.  I texted Paul, and he met me at E-6.

After a short wait there, we were taken to a scaled-down hospital room, vitals were taken, and I was started on the saline then Benedryl drip for the next 30 minutes.  They were still waiting to receive the Rituxan.  The orders had to be sent from the doctor to the pharmacy and then delivered to the ATC.  Just after 5pm, they started the Rituxan.  I emailed my research nurse to let her know that we were in business.  She then passed it along to Dr. Shah who later responded, “Yah!  Now I can have a beer!” :)  She earned one.  I don’t know what she normally does on Thursdays, but all she did yesterday was work to get me in.  I am grateful and blessed.

The first dose of Rituxan is started slowly and increased bit by bit to watch for side effects.  During the second increase, the roof of my mouth started to itch followed by my throat getting very sore.  I didn’t realize how sore until I bit into the sandwich that the food service folks had just brought in.  It felt like little razors all down my throat as I swallowed.  It didn’t help that it was the driest sandwich that I have ever had!  Next time I will order the soup!  Again, we have to learn what is best to order….  I couldn’t imagine how I had gotten this bad of a sore throat so fast, so I called the nurse.  She said that it was a side effect to the Rituxan.  So she gave me another hefty dose of Benedryl and hydrocortisone.  Wow!  That stuff worked fast!!  Within seconds, the pain was gone.  Amazing!  Of course, my already tired and relaxed from the first dose self felt the effects all over my body.  I was sleepy and heavy all the way down to my toes.  Because of the side effect, they had to stop the Rituxan for 30 minutes and then start back from the beginning, increasing the doses slowly.  The second run was fine. I dosed off and on throughout the rest of the evening, being startled back to consciousness every time the buzzer on my IV went off and my blood pressure cuff would automatically fill up.  My vitals were taken regularly, and by 10pm the Rituxan drip was complete.  I had to stay another hour for observation (and a nap).  Finally, at 11pm, fourteen hours after our morning arrival, Paul and I made our way back across the hospital to wait for valet to bring the truck around.  You’d think that after 11pm, the wait would be minimal.  However, the drivers were minimal as well, so the wait was usual.  By the time we crossed Houston's barren highways and made our way home, it was after midnight.  I was sure that the truck would soon turn into a pumpkin…or is it the pumpkin that turns into a horse and buggy?  But we made it home safe and sound, crawled under the covers, and thanked God that He had gotten us through the day successfully.

No one said that this journey would not have bumps in the road.  We just have to keep hanging on for the ride of our lives.