ED, LD, and the shape of things to come.

June 29, 2013

E.D.

Electronics Down

For hours yesterday I did not have internet. I kept rebooting on my end, no dice. I was not about to call a hematologist and complain about the lack of access, so I thought I would go look around to see what I could find. Sure enough, the router was sitting on the desk at their station, black, no flashing lights…a sad sight. The nurses had unplugged it to charge their phones. But, ah ha, I had packed a spare power bar and adapter, it was now a gift and dedicated to their personal phone use. Problem solved!

L.D.

Lisa Down   (Pronounced Lee-ZA  vniz!)

I took my usual and much looked forward to evening walk, short as you know, a 2 block maximum total with cane in hand and on the spy for park benches should they be needed as a respite. It was a bad idea. I made it out of the gate and 1/2 block down to a little store for peaches, brown sugar cubes, water and a box of cookies for the nurses. Stood in line, oh did I stand in line, then leaned in line, then slid to the floor in line. Lisa Down. I was helped up, paid, and I don’t know how, don’t even remember, but struggled my way 1/2 block to the guard gate and into the main hospital building. This is not “my” building, it is across the courtyard. But a heavenly angel appeared in the form of one of my nurses. I don’t know the reason she was there, but know deep inside I know. She got my sack, my arm, a wheelchair and took me through the tunnels and back to my private little condo, #215. She got me in bed, changed me out of the walking clothes into my huge (Men’s XL) Thunder T-shirt I love, and unpacked my groceries. She left giving me a big, tender hug…

I don’t know her name (I’ll check her name tag tonight), but in those minutes  a new and special relationship was formed. No words were exchanged that neither she or I understood. But emotions, touch, and hearts reached out communicated more than words ever could.

An hour or so later, the extreme pain, burning, “glass cutting my feet and legs” feelings began. And I reached out – to my  sisters who have walked this path before in the previous few months. I am the 5th American to have this procedure in Moscow, but numbers 1-4 are always standing by to help in any way. We have a forum established for those who have undergone HSCT in Moscow, and for those in the wings, awaiting their admission date.

We call ourselves the Sisterhood of the Fedorenko Alliance. SOFA for short!

Movie rights are available – we are quite a bunch, 9 all together now!

So, I get on the computer, with the happily glowing and blinking router around the corner, to reach out and ask…”What do I do?” The forum is abuzz with answers, some panic and always a calm person, but not this night. From Queensland, Australia to the west coats of Oregon, I was answered immediately –  buzz the nurses. Note to self: I need to go back and read the Mrs. Tuck blog. Hell, she would have rung the nurses – no questions asked, and so should I! On second thought, she would have probably grit her teeth or bitten a billet or something like that. It’s those east coast women, so strong.Damn!

BUT… Texas/Okie women (I’m hybrid) are as well, and I’m giving the world a run for the money on “determined” and “strong” the next few weeks! I’ll think I’ll add “fearless” as well. I’ve seen the Hickman pictures…

Back to my story -Well! You would have thought I was having a heart attack. The attention and devotion of the staff was tremendous. A phone call to Dr. Fedorenko on their cell phone while they stood looking at me in my room, I spoke with him (mind you it was 11:30 pm here) and a shot was administered – all within 3 minutes time.

Photos of just of few of those providing excellent care:

Miss Bon Appetit, she speaks french..woo hoo…I can communicate!

Brooke from Pennsylvania, a SOFA sister who was #4 for treatment from the U.S.

The nurses and Dr. Fedorenko – the router is happily blinking behind him  😉

The cute and thorough nurse administering the steroid IV.

My schedule for the next five weeks.  This is just a rough draft with very probable changes, due to the nature of the procedure and how my body will react.  This gives you a pretty good schedule and will highlight things to come.

Baby Steps … Primary School

Note – ALL dates are approximate due to the nature of the procedure and how my body will react.

June 29 – July 2 – Today the baby steps of a new life begin. I was given a dose of IV steroids at noon, and a few pills, to, in the words of Dr. F, “Protect the gut”. At 11:00 pm and 3:00 am over the next four days I will receive injections of neupogen which increases the number of hematopoietic stem cells in the blood before collection by apheresis for use in hematopoietic stem cell transplantation. Side effects: the stimulation of the bone  marrow causes extreme pain in the bones, as if they were busting apart. I will not hesitate to hit the buzzer for my angel nurses to dash down the hall (it’s only 15 ‘, I’m the room next to the desk) with pain shots!    Note: Check Wikipedia for the big medical words, I have been educating myself about the treatment for one year and I still have to research and re-learn.

Lower School

July 1st – Happy Birthday July! Surgical implantation of a Hickmam line for stem cell collection and blood re-circulation will be implanted. The next day at 3:00 am is the last injection.

July 2 – Apheresis, or the procedure in which blood is drawn through the Hickman line and the cells are separated and immediately cryo-preserved until my body is ready for their re-infusion. The remainder of the blood which has been withdrawn is returned to me by the machine. Close to two million cells are needed and the procedure can only be done for a few hours before it’s time to rest. If enough are not collected on the first day, the procedure is repeated day two.

July 3 – if only one day is needed to collect the cells, this will be my day off and the Hickman line will be removed!

Middle School

July 4 – A biggie today – this is the Central Venous Catheter day.  Feared by many, including me. I have been told if you curse a few times, all the while holding completely still with your head turned to the left (no anesthesia by the way) while on a hard table, that it’s just great. I’ve been searching in: translate.google for awesome cuss words already. Pronunciations included, thank you! And you think you’ll be the only ones shooting up fireworks at the end of the day??? I think not!

I’m really thinking if I do this well, I’ll just skip a few grades and go straight to Yale, or Dartmouth or Harvard. Princeton? oooohhhh, Berkeley! Maybe!

July 5 – I will be moved to the third floor into a compartmentalized room which will, at a later date, be me isolation room.

July 6th – 9th – Conditioning begins, with very high dose chemotherapy to eradicate the immune system, all T and B Lymphocyte cells will be banned from my body and waved good-bye to. A “No Vacancy”  sign may go up at the door of my house as well. Neon….and flashing!

Continual IV’s of anti-biotics are administered in one of the three lumens emerging from the Central Line. These will continue until my discharge date.

July 9 – the last day of chemo if all goes well, and a haircut! The nurse will arrive with scissors – big scissors – to cut as much off as possible to make the total hair loss in isolation much easier.

Upper School

July 10 – is my birthday. No really, it’s what the medical community calls the day one is re-infued with their own stem cells. A new birthday. It’s a big, yet very serious day. I’ll see if I can have a nurse photograph through the isolation glass wall divider.

July 11 – 15 – I rest and blood is checked daily, watching counts lower and progressing to the point of no immunity. Just before that time, my room is swept clean of all but my phone, laptop and iPad (they can be wiped with a sterile solution). I will wear a hospital gown, and my beautiful Crocs as they can be wiped down as well.

July 16 – 28 – complete isolation. Nurses and Doctors scrub up, and I bathe in Vodka – yep! I’ll for sure get some pictures of that. The Vodka, not the bathing.

Ivy League University

July 28 – 29 – isolation period ends meaning the engraftment of the cells into my body has taken place. And, the immune system has no record of MS in it’s memory. WOW!

July 39 – August 5 – Moved back to the second floor and my angels (although I know there will have been others on 3).

Masters Degree

August 5 – probable discharge date

August 8 or 9 – fly back to Houston, and head to the house in south Texas for a respite.

Doctorate

In the months to come, I will experience highs and lows physically. Cytoxan or Rituxan will be administered monthly for three to six months. Then…at the ten to eighteen month period, I will be free. Free to run beaches, raft rivers, climb on rooftops, hike Mt. Rainier, snorkel in the BVI. I want to make a difference, and leave a tiny little imprint on the world of who I am, and what I was able to accomplish…for others. These are just a of few of the reasons I want to love life out loud, not from the confines of a bed in a nursing home.

May God’s grace and goodness shine on you and me this night. His hand of love is evident in this world by the love you have all shown me…

Goodnight Moon,

Lisa