Daily Archives: May 10, 2013

Hold on to Me as We Go…

Hold on to Me as We Go…

As we roll down this unfamiliar road…

While this experience is new to me, I am so much at peace here, it’s almost eery.  Nahhhh…ethereal is more like it.  It’s as if I’m following orders that have no verbal directive, yet, I know exactly what to do next.  I suppose that’s what happens when you come to a place of complete trust and acceptance of your path.

What was next for today, was another day-long run of chemo/fluids/etc.  I got about two  hours sleep last night.  Not that I didn’t try to sleep, or that I was uncomfortable. I managed to wake up at 6:00 a.m., knowing that my first chemo run wouldn’t be until 11:00 a.m., so, I had plenty of time to just lounge around till breakfast (9:00ish), and get my shower in plenty of time for the chemo.  Surprisingly enough, I sat up in bed, and I felt really stellar.  Now, my version of stellar, may be your worst day, but, all things are relative when you have MS.  I felt a complete turnaround from 24 hours prior.  Given my newfound physical status, I thought I would jump (not really) into the shower to be ready before breakfast.  I did so, with ease (not so shaky/sore today), and just in time for my favorite nurse (nicknamed Bon Appetit by the 3MSketeers) to deliver my meal.  I had just taken my last bite at 9:30 a.m., when the IV nurse arrives all ready to go…1.5 hours early.  Of course, I didn’t question her, because I wouldn’t understand what she was saying, anyway, and figured the sooner we got started, the sooner it would be over.  Of course, Dr. Fedorenko arrived shortly after to explain that he wanted to run it earlier so that it wouldn’t interfere with my night-time schedule as much (thoughtful).  He ALWAYS wants you to know what, why, where, who, and when at every step along the way.

By the time all was said and done, I think I had six IV bottles of  meds, including chemo.  The infusion had made me sleepy, so I tried to nap for the last hour of it.  When the nurse arrived, I asked her if there would be more and what time.  She showed me on her watch in military time…5:30 p.m..  To date, I still have no side effects from the chemo, most likely attributable to the increase in meds (pic below), but the man at the helm says the chemo is cumulative and the effects will be as well.  My temperature currently stands at 97.5.

As I was lounging on the bed, one of the nurses, whom I’ve spoken with before, and knows a little English (she learned it in college), began to ask questions about where I lived…was it in the city or the country.  She described to me that she and her husband had an apartment in the city (she works 24-hour shifts), and a big house in the “village” where they have a garden and grow potatoes (she showed me the callouses on her hands).  As soon as she said that, I grabbed my phone and held my finger up as if to say “one minute” and I pulled up the pic below to show her where I lived.  The second I looked at the pic that is the view from our back patio (pic below), it was like a dagger through my heart, and I started to tear up.  That view is where I have found solace during my darkest days these past 9 years, and to see it, knowing that in the two weeks that I’ve been gone it is now blooming and more beautiful than ever, just hit me.  Yes, I’m that strong, warrior, where’s my machete, I’m gonna kick some MS butt woman, who thought nothing of venturing to Russia for a stem cell transplant, but I certainly don’t have a heart of stone, and this quick lapse melted mine.  We ended the conversation with me complimenting her and the staff on the wonderful job that they ALL do, and told her that other countries could learn a lot from them (I’ll be summarizing those observations in a post toward the end of my stay).  She thanked me, and went on her way with a smile.

Home...from my back patio.

Home…from my back patio.

At this point, I had about 45 minutes to take a walk outside (it’s 70+ and sunny).  I head downstairs, and realize that I had just been infused with six bottles of fluid and had only used the restroom once during that timeframe.  Suffice to say, it was a very short walk.

So, promptly at 5:30 p.m. the nurse arrives with two more bottles.  The bottles are smaller, but the drip is slower.  She makes an impromptu announcement that shel’ll be back at 10:30 pm. for one last round.  There goes that early date I had with my pillow.  These next two days of chemo serve as the perfect opportunity for me to just kick back, take naps, chill, and heal.  I don’t know, maybe if it wasn’t for the five days of high-dose steroids, two days of stem cell collection; surgery for catheter line placement, abdominal injections (Heparin), and two days of chemo that I wouldn’t have seen my emotional strength faltering today.  It’s like being in a car accident, and the day of the accident you feel fine, but the days following you feel like a huge bruise.  Speaking of which (pic below).

From first day of stem cell collection.  That's what happens when 800,000 stem cells course through your veins!!  :)

From first day of stem cell collection. That’s what happens when 800,000 stem cells course through your veins!! 🙂

All ramped up with protection!

All ramped up with protection!

Don’t let this post lead you to think that I’m drowining in my tears.  I just want to let you know that the tears I’m shedding are happy ones, not sad.  When I see that view, I see my future in it…and it is bright.  Hope is a powerful thing and I haven’t had any for so long, that it’s difficult to process.  NOW, WHERE IS THAT MACHETE OF MINE!!