Kickin' MS with HSCT

Completion of Day 1 Chemo: Friday, Aug. 30, 2013

Made it through the three cycles. The first comes around 11-12, and runs several hours, I tried to read and then sleep through it. It really took all my energy, I didn’t really feel bad, just really weak. Kristy and I tried to take a walk in the afternoon, my legs were so weak, I just made it to a park bench and enjoyed the cool weather, and being out of the room. I always worry about falling, and tripping, so this was a big concern of mine at this point.

Made it back to the room for a break and a visit with Dr. F, he showed me the schedule for the next four days, and I would have a another small dose still today, and then another infusion late this evening, 11:00. The small dose was fine, but then I tried to stay up for the late dose and fell asleep. She woke me and hooked me up and left, shortly thereafter an alarm went off on the pump and it showed air in the line. I’m thinking this can’t be good, so I called the nurse. She promptly came and tried to bleed the line of the air, but after 30 min, it just wasn’t working. She got a new bottle and line and started all over again. So, this was a really late night and I slept again, then woke up to see it almost done and rang for her to disconnect it. Glad that was over. I then see a message from Kristy that the dose was MESNA, and I should drink a lot of water to flush it out, it can make you nauseated, which I was beginning to feel a bit already. So, I downed a liter of water, and proceeded to need to pee every hour on the hour. Guess it worked though, I did not have any nausea after that. Handy having an English speaking nurse as a friend just two doors down. 🙂

I woke a bit tired from the late night and frequent bathroom breaks, but starving. The dinner last night was not a favorite, maybe not of anyone. I went to jump in the shower and noticed my “Octopus”, let’s just call him “Marvin”, well Marvin was bleeding around the bandages, so I went and showed the nurse show she could change the bandages after my shower. No bleed out, just needed some cleaning up, good to go again.

Kristy wanted to get out for a walk early, before we are zapped after the chemo, so we took a stroll. The leaves are falling and the air is crisp, it felt wonderful to sit out for a while before hitting day two.

David Grey – Babylon Enjoy, while meeting more of my friends that helped me get here.

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Day 1 – Chemo:

Well today’s the day they start to kill off the bad stuff, and some of the good, that’s how chemo works.  You have to kill some of the good with the bad, and hope that they outcome is,

the good is strong enough to fight back and blossom.   I was a bit lightheaded this morning, probably from not eating enough yesterday, due to the pain.  But, I made it through the night and woke up just in time to see my Ole Miss Rebels defeat Vanderbilt 39-35, in a last minute win.  So, it made it all worth while. 🙂

I will have two rounds today, plus a mound of pills to choke down, before the day ends.

Short post today, a bit tired, but wanted to keep you in the loop.  I’m still here and kicking.

Van Morrison – Into the Mystic
http://www.youtube.com/watch?v=O0DJ8hWgNes<

These are the reason I'm here fighting, and many others of you I don't have photos of, but your in my heart and head. And my battery is dying, so you will get your 3 sec. of fame tomorrow. Thanks for your love and support!.

A little late posting today, sorry.

My day started off nice enough, woke up refreshed and ready to go. Amazing how fast you can get ready in the morning when you don’t have hair to deal with, so out the door in a flash for a nice walk. I went to the chapel this morning for some quiet time. Fall is in the air here, so I was loving the walk with the leaves drifting down around me. So, I get back to my room and take a rest, then it’s time for the “octopus” installation. They put in my new line in my jugular, (other side this time) for the chemo that will begin tomorrow, and that bugger hurt like the dickens.

Had me down for a while, it felt like my head would explode. I pressed the nurses button, which, by the way, when it chimes, sounds just like the ice cream truck is coming down the street. This may explain my unusual desire for ice cream since I’ve been here. Sorry I digress. She comes to see what is wrong and comes back and reapplies the bandages on my neck, I guess thinking they are too tight and cutting the blood off to my brain, not sure about that idea. Anyway, it didn’t help at all, and not too long later she came back and loaded me up with some good pain meds, and I’m feeling much better. What away to ruin such a beautiful day.

Anyway, it takes more than that to take me down.

Back at home it’s Football Time in the South and my beloved Ole Miss Rebels will start their season tonight vs. Vanderbilt University. Hopefully I can watch it on replay tomorrow, but if not, please don’t tell me the score.

Thought I’d give you the song first this morning, to play with the photos. Enjoy!

Here comes the Sun! VW

Well, a few days behind on posting, a lot has been going on.

Sunday:
Felt great! It was raining and cold outside, so decided to get my laundry done in preparation for moving up to the third floor. This is a chore since, it do it all my hand in my small bathroom sink and try hanging it all over the kitchen area to dry. I have a small heated towel bar, but the emphasizes is small. Took a nap, and then Kristy and I ventured out to the market in search of ice cream for me. What a treat, since I was on the Gluten Free, dairy free and egg free diet for over a year, Ice Cream and pizza I can’t get enough of. Luckily I’ve not gained any weight.

Monday:
Big day, I have my last steroid infusion, YEA! And I’m preparing to move up to the third floor. So, I’m packing up my room and then waiting for my new room to be sanitized for me. Then Dr. Fedorenko comes down and says it’s time for me to go have my line in my Jugular inserted, so I will be ready for removing the stem cells on Tuesday. So, I’m waiting out in the hall and hear Kristy not too happy having hers put in, this is a little un-nerving, especially when she comes out crying. OK, now my turn, GULP! I lay down and they turn my neck and begin the process, it is painful, but I live. It becomes more painful as the day progresses though and just trying to turn your head is impossible.

I go lay down in my old room and then they come to move me up to the isolation floor, 3rd floor. I get settled and eat a bit, and then Kristy and I done our best lunch lady nets and go find ice cream again. Well deserved I’d say. We get back to our rooms and call it a night, knowing the last of our stimulation shots will come at 11:00 pm and 3:00 am, and luckily they gave me some pain meds then too, and I was able to sleep a few hours. Try sleeping with an octopus attached to you neck, just try it sometime, not too comfy.

Tuesday: (ok, still a time traveler so I can bring you up to your future, my real time again).
I woke up early to shower and be ready for them to arrive at 7:30 to start gathering the stem cells. Put on the big Girl Pull Ups, and have all my toys on my bed to amuse me for the 4-5 hours this will take. So, that’s where we are now.

Until tomorrow, or today, who knows, VW

Well, yesterday, Saturday, was a pretty quiet day. It was a bit cold and rainy all day, so I didn’t get to get out an do my walks, just did some stairs, and those aren’t what I do best at all, just trying not to fall is a more accurate description while, holding tightly to the handrail. Anyway, I did them.

My injections at 11:00 pm, and 3:00 am went well, the nurse didn’t scare me too much. I’d tried to warn her I have horrible nightmares, and not to startle me, so she was gentle. I’m a light sleeper anyway, so woke up without an issue or blood shed. The Solumedrol drip was at noon, it takes about 30 min, and you just lay there, so you’re seeing how my day is going, pretty slow. The big stuff will start happening on Monday when I move up stairs to the “clean floor”, where Kristy is. They said our rooms will be next to each other’s. I’m going to have her take photos of my head shave, with her supervising the Mohawk Haircut. So, thought I’d throw out some ideas I was mulling around. Let me know what you think?

So, you’ll have to wait until next week to see what we come up with. I know you are sitting on the edge of your seat waiting. I had to give you some suspense, this can get pretty boring otherwise.

Enjoy your Sunday, where ever you are. I’m sure there will be some football being watched somewhere, even if it’s still pre-season. It’s football, you HAVE to watch it!! I can’t wait to get back for the Ole Miss season, I will have only missed three games.
VW

Good Morning, I’ve wrapped up Friday, and am well into Saturday, but I like doing one day at a time, so today you will read what happened yesterday. Confused yet? I am a time traveler, so just get used to it.

FRIDAY: August 23, 2013
They came in and took my temperature at 7:00, all normal, then Dr. Fedorenko comes in and checks my BP and pulse as all is good, and then he proceeds to layout out the game plan to get this party started. At 11:00 pm and 3:00 am I will have my first injection to stimulate the my bone marrow to start to over produce, this will be everyday until Monday, I believe. (Those aren’t the best times for my sleeping, but we’ll work with it) Then will take two pills, one to take 30 min before dinner and one to take 30 min before breakfast the following morning. These will help protect my gastrointestinal from all the stuff that’s about to go through me. I don’t know, but maybe they should have started those when they started serving tongue?? I’m just saying. At noon a nurse will come down and insert a peripheral cannula, that will stay in my arm for the daily steroid infusions, this way they don’t have to keep using me as a human pin cushion.

It doesn’t hurt, I just can’t get it wet in the shower. This is where those shower shields I brought will start to come in handy. Maybe should have ordered one more weeks supply of those, now that I have this to cover too, oh well, it will work out. So, then I laid there for 30 min while the steroid infusion dripped into me.
I’ve had people ask about the translation sheet for symptoms, we were given it yesterday, now that they are actually doing stuff to us that we might re-act to.

Then done for the day, free time!!

So, Kristy and I decided to venture out of the gates, the first time since I’ve been here, so really excited., and I really would like an ice cream. YUMMY! I’ve really been craving Ice Cream lately, I don’t know, not eating any for over year might do that to you, so now I want it any chance I can have it. We have a nice walk to the market, which is just a couple of blocks away. Great to get out, we know in a week, we will be stuck on the third floor for pretty much the rest of the time so get out now.

Another lovely dinner arrived, and I choked it down and then went on another walk around the grounds with Kristy. It is nice to have someone that speaks English around, even though it’s Aussie English. (I can totally say that, she totally picks on my Southern accent). Anyway we had some photos taken by the chapel and then headed back to our rooms. I had some laundry to do and was trying to stay up until 11:00 waiting for my first injection, it’s not too bad and I try to go to sleep, knowing that I’ll be woken up in 4 short hours. My legs spasticity is going in overdrive and I’m totally uncomfortable. I wasn’t planning on taking a sleeping pill tonight, but I had planned on getting some sleep, so I take it, and remind myself to talk to Dr. Fedorenko tomorrow to see if I can take my Magnesium pills I brought for the spasticity. I hate taking sleeping pills if I don’t have to.

Well that wraps up another very exciting day here. It’s surprising how fast time is going, I know I’ll be home before I know it and just in time for the Ole Miss v Alabama Game, Hotty Toddy!!
VW

Testing is complete and… I’m moving on to the treatment stage!! What a relief. You can’t imagine how nerve racking not knowing if everything you’ve worked for was really going to happen. So, Dr. Fedorenko comes in this morning to check on me and said it would be 3:00 before they had the results of the blood work, that was all they were waiting for. We’ll, who pops in before lunch? Dr. F, with MRI and files in hand. He pulls up a chair and goes over everything and then says he would like to start me on the shots to stimulate my bone marrow to produce more stem cells. This will allow them to have what they need to harvest. I’m thrilled, to say the least. This is why I am here, to re-boot my system to kick MS. So, this will happen twice a day, 3:00 am and 11:00 pm, for four days. Ok, they didn’t ask for my input on the timing of the shots, but I AM curious. He also said I could stay in this room until Monday, when they will move me to the 3rd floor where the “clean” rooms are. This is fine with me, since he knows I like to go for walks and want to walk as much as I can before the put me in lock down. So, he gives me a day off, no more tests, just to relax and go outside a few times. It was nice. Then lunch arrived. This gives new meaning to “he slipped me the tongue”

Then another surprise this afternoon, Kristy Cruise pops in. She just arrived after a 30 hour plane flight from Australia. It was good to finally meet her face to face, she will be starting the treatment right along side me. She has already done the head shave so she could donate her hair for wigs for cancer patients, and to get her young boys prepared for the new look. Our rooms will be next to each other on the third floor.

Several have asked how I feel, I feel great! Just ready to get this underway. The nurses and Dr. F have been so kind and want to help, I am sure I’m where I need to me.
So, a pretty big day, all in all.

VW

Wednesday, I woke up after having to fast again. Yes, they brought me breakfast anyway, and yes, it was oatmeal. REALLY! So, there it sat for several hours again. They then took me over for an ultra sound, of the abdomen, etc… and then to a different department for an ultra sound of my legs, vascular. I was a little concerned with this, because before I knew it was MS slowing my legs down, I had some vascular surgery in hopes that would do the trick, it didn’t. It seemed like it went ok, so we’ll see. But, it’s a little like a dream or a movie to be laying on table people working on you and talking, but you have no way of knowing what they are saying. Very surreal. Anyway, made it though that, then off to my room for a nap and lunch.

Then they took me out for my MRI’s, brain, cervical, spine and lower spine. Non-contrasting and then contrasting. I was there about 2 hours. Laying that still made my legs very weak, luckily I had one of the good nurses to help me back. (they are all good and so kind, by the way) They know I’ve told them no wheelchairs, as long as I can walk on my own I will, stubborn that way. So I get back to the room check a few messages and it’s time for dinner, wait for it… wait for it… YES! Tongue!! AND fish soup, BONUS! (we had fish last night, so I’m thinking they made good use of those leftovers)

So, after, “dinner” I went out and did a lap around the complex, including taking the stairs instead of the elevator. I’m not sure how much exercise will be able to have after I go up stairs, so might as well do what I can now. Then back to the room and do a little laundry. Not too easy in an tiny sink with no drain plug, and only one towel to wring them with, but I got the job done. Thanks Pop and Mom for the Snickers 🙂

VW

We’ll day two under my belt. Today they had Me leave two urine samples first thing in the morning, then a nurse came in a swabbed several areas and then I went to x-rays, then I was able to eat breakfast. Which let me tell you after sitting out for 3 hours oatmeal is like cement, so took a pass on the oatmeal. I think she thought I’d eventually want it since she left out for me for lunch too. I felt like the kid that didn’t finish her meal, so they keep serving it to her every meal until she eats it, it rots, or the child dies. Well, dodged a bullet there, it was gone by dinner. Victory!!

My parents stopped by to say good-bye and loading me up with supplies. I may be able to open a black market commissary with the amount of facial tissue I have alone. I’m stocked up. The word will get out and I’ll see envelopes of money under my door. Secret handoffs in the hall way. I will be known as the lady that can get you anything. POWER IS MINE!!

So, after the parents headed off the last test of the day was a visit and I had lunch and two more test scheduled. Opthomologist exam and heart Ultrasound. Then Dr. Fedorenko let me know I was done for the day and I was free to walk outside, or even go outside the gates (with my hall pass of course). Considering my eyes had just been dilated and the sun was quite bright I opted for a short nap, then I’d head out after dinner. So, I did go explore the hospital grounds, and they are just beautiful. What a relaxing walk.

A little to get your toes tapping this morning. VW