Saturday, May 17, 2008

Aphereisis Day ONE and Day TWO and Day THREE

So today is Thursday, May 5th the day for the collection of my baby stem cells!! Wow...this day used to be so far away.....and now it's actually here! I was brought back into the section of the BMT unit where there are the traditional type hospital beds, separated by curtains and surrounded by this high tech/new age gadgets that are to collect my stem cells through one line in my chest and whatever is not needed will be returned to me through the other line in my chest. I'm imagining it's a very similar technique as dialysis for kidney patients. I'm still playing "catch up" with this journal as I came across some difficulty last week and haven't been able to get to writing till now. But I promise all gory details :) and some new photos to follow. So, not to say that the medical staff "lie"....mind you.... LOL but 99.9% of them said....."Oh, you're so little I'll bet you "collect" in one day". Which means they expected me to collect the amount of cells I would need for the entire transplant in one day. That means that I would collect anywhere between 2 and 3 Million cells in one day. Well, needless to say I spent 3 solid 6 -8 hour days collecting so it took me the entire 3 days! The first day I collected 800,000 cells and the 2nd day I collected 1.2 million cells and finally the 3rd day I was finally put over the edge that was acceptable! I finished collection on the afternoon of May 7th, but we were too beat to drive home from Tampa, so we spent the night at the apartment, and left for home on May 8th. We were home a grand total of Thur the 8th, Fri the 9th, Sat. the 10th and then left for Tampa again on Mother's Day Sunday the begin CHEMO DAYS on the 12th and 13th..........I promise to catch up soon. I just don't want to leave anything out!

Wednesday, May 14, 2008

What is Stem Cell Collection, Anyway???.........

Today is Sunday, May 4th, 2008, and it was a typical day of back and forth to Moffitt for my 10:00 am shot and my 4:00 pm shot of Neupogen. Our new "home" is about 3 miles to the hospital and a straight shot down one main road, so it literally takes only minutes to get there. We spent our first night at our "new house" last night and it was oh so very comfortable and just like a home for us....we really are happy here .......much more conducive to the healing process, than to be in a hospital atmosphere. It's also convenient for us and a comfort also knowing we are so close to the hospital. I think it's about time though, for me to fill you in on what all these entries mentioning Neupogen mean, especially because I'll be "collecting" my stem cells tomorrow and they are tied into each other!
The Neupogen shots I have been receiving for the last 5 days both morning and afternoon, are shots to increase the production of white blood cells in my body. Now, the bone marrow is the body part that manufactures and stores our blood cells. The Neupogen shots though, increases the production of these blood cells to such high levels that my bone marrow can no longer contain them so they begin spilling out openly and freely into my blood stream, making them more available for "Collection" tomorrow. Well, we're shooting for going to bed early tonite as we have to be at the Moffitt BMT Clinic at 7:30 am for a blood draw, then we meet with the PA for a bit and then it's Officially Collection Day One.

Moving Day....

Today is Saturday May 3rd, and Linz and I were needed at the BMT clinic by 10:00 am for my first Neupogen shot of the day and to receive care for my Central Line. While we were doing that my Mom and Sis moved all of our stuff from the Extended Stay Hotel to our 3b/2b "Home Sweet Home" apartment we will be living in for the next month. Entering Moffitt on the weekend is so different than during the weekdays. It's like a ghost town on the weekends so it really was and in and out deal this morning. Always..... first is weight, blood pressure, pulse and breathing.......and taking a vial of blood. I checked out well in all areas so they released me after all the blood counts came back normal. So now Linz and I made the inaugural trip from Moffitt Hospital to "Home" . Mom and Kate, of course had all our the things brought in from the cars and put in their respective rooms of the house, so we basically just put things up and organized our own things in our own rooms. Then back to Moffitt for my 4:00 pm Neupogen shot.......Gotta keep those baby cells growing for the Big Day!!

Saturday, May 10, 2008

Neupogen and More Neupogen.....

Today is Friday May 2nd. Had to be at the hospital by 10:00 am for my central line care and my first Neupogen shot of the day. The line looks really good (if incisions and tubes sticking out of your chest CAN look good!! LOL) Kate had to change the dressing on it last night at the hotel, as it became kinda bloody and yucky, but not too bad. Nurse Kate did a great job!! I didn't have a hard time sleeping with it either, which was quite surprising. I do sleep curled up in the fetal position on my right side, so I'm thinking it kinda protected it and I'm not a big mover either when I sleep so that turned out well. After having the dressing changed on the central line by the nurse and the shot, we grabbed lunch at Panera's and then went back to the hospital because we had a "Caretaker Meeting" to attend and we wanted to also talk to my Social Worker who was arranging "housing" for us during the entire stay at Moffitt. One thing I forgot to tell you........ It's very unusual that people are allowed to go "outpatient" for a Bone Marrow Transplant, however because I am in tippy tippy top shape and have wonderful caregivers (Mom and Kate), I am being allowed to do this Outpatient rather than Inpatient. Isn't that ironic? Here I am with Cancer, and yet I had to go through 2 days of intensive testing to be sure I could tolerate a BMT (ie...survive it) and they could find nothing else wrong with me!! My heart, lungs, liver, kidneys and every other body part is in great shape, thank you very much! And for that I am what's with this cancer shit? Anyways....... The H. Lee Moffitt Cancer Center owns apartments and for a nominal fee, patients who have to stay there for any length of time will rent these apartments from them. Most of the apartments Moffitt has are of course, 2 bedroom and 2 bath, one for patient and one for caregiver. Moffitt does have 2 apartments that are 3 bedroom/2bath but those are hard to come by and cannot be guaranteed. When we met with the Social Worker to see if we could get the keys to the apartment early so we wouldn't have to go around finding someone on Sunday the 11th when we returned to let us in, lo and behold (this is where my little miracles happen) she told us that a 3/2 was available that day for us to move into!! Exactly what we were hoping for, so each of us could have our own bedroom. YAY............we met the lady from "Housing" and signed the papers and got the keys, to what will be our "home" for the next months or so. We then went to our Caregiver Meeting, and then went back up to the BMT Clinic to receive my 2nd Neupogen shot of the day. We left the hospital and made a bee line to the apartment to check it out and it's just perfect!! It's as large as a home really, with 3 nice sized bedrooms and 2 nice sized baths as well as an eat-in kitchen, separate dining room and a nice sized family room......and it's even decorated cute with nice furniture and of course, nice and clean! Besides the Family Room having a TV, the Master Bedroom (ME!!) also has a TV.'s my F'n Party...........LOL. After checking out the apartment we went back to the hotel and decided to stay there one last night and that Lindsay would take me to the Hospital for my Neupogen shot in the morning while Kate and Mom moved us over to the apartment. We got a pizza for dinner......a dang good one too for not knowing where to go.......packed our things for the Big Move and chilled for the night.

"Arriving" in Port.........

Today is Thursday May 1st. Last night Linz offered to take me to the hospital early this morning to give Mom and Kate a break from having an "early" day. So the alarm went off at 5:30 am although we didn't need to be at the hospital till 7:00 am. I need that little extra time in the morning to get that heating pad on my back before I can move! I usually would sip on a cup of coffee at this point, but it was "nothing to eat or drink after midnight" routine, so I had to postpone my cup of Java until after surgery. We went up to Outpatient Surgery and did the usual "check in". They took me back to the pre-op room and Lindsay was allowed to go with me. I answered the bajillion questions from the nurse, anesthesia and surgeon and they went over the procedure and what to expect afterwards. The procedure I'm talking about is the placement of a Central Line in my right chest to that it can be used for aphereisis, blood draws, chemo and any other fluid or replacements I may need for the next month. It beats being bruised to death from constant needles going in and out and risking blowing out your veins at a critical time. I was then taken back to the surgery are those lights bright!! They need to pass out sunglasses! The surgeon then asked me what kind of music I wanted to hear while they were placing the line and of course I said "Classic Rock" and his response? "Will you marry me? Your my kinda girl." I thought about it......he was kinda cute :) That's all I remember my "bartender" (their words not mine LOL) administered my cocktail and I was OUT. Didn't even hear one chord of Lynrd Skynrd!! Next thing I know I'm in recovery, waking up to Lindsay video taping me passed out! The rest of the day was spent meeting with the nurse to check on and explain my line care, meeting with the dietitian and a meeting with the pharmacist who added a bunch more meds to my current regime. There are anti-virals, anti-fungals, anti-bacterials and any other "anti" you can think of. I was also told I'll be on Acyclovir (remember the miracle drug for my shingles?) for ONE YEAR after the transplant as the herpes virus is the easiest of all to contract. We also saw the PA for a brief meeting and I received my first Neupogen shot before going back to the hotel.

Wednesday, May 7, 2008

Pre "PORT DAY"........

Today is Wednesday April 30, 2008 and it's a pretty low key day. We all got to the hospital, me, Kate and Mom at 9:30 am because they needed to draw blood to be sure that all was well for the "procedure" tomorrow. We then had a meeting with the PA (Physician's Assistant) to go over what all to expect during the surgery to place the central line in my right chest. I call it a port for short. The Nurse in charge of the BMT clinic also came to this meeting where I signed all the consent forms as well as giving my permission to join 2 different studies about MM. They basically say they will be studying me for life and I had to give permission so that when they take blood or other tissue from me that I will allow them to take a bit more for the study. Hey.....while they're already in there getting stuff or somethings being drawn out, I may as well share the wealth and perhaps by doing this I'll be contributing to some genius scientist finding a cure for this damn disease. We were done at the Hospital by 1:00 pm and then went back to the hotel to wait for Lindsay who was driving down (and over) from Gainesville. She got there not too much after us and since I've been on a "breakfast" kick......eating anything you would normally eat for breakfast, I wanted to go to Bob Evans. Right now, I really need to eat when and what I like and as much as I can tolerate before I go back on the chemo. I love Bob Evans biscuits and gravy so that's why we went there. See, Cancer has it's advantages.....I got to pick the restaurant! LOL We came back to the hotel after dinner and just watched TV and chilled for the Big Day tomorrow. We all slept like babies until the alarm went off at 5:30 am.

Thursday, May 1, 2008

Headin' To Tampa........

We left home around 1:00 pm for our trip to the Hotel in Tampa because it's just a 2 hour drive and you can't check in until 3:00 pm anyway. It's a decent hotel, an "Extended Stay America", and I have never stayed in one before, so I didn't know what to expect. It's not Caesar's Palace or anything (I wish I was there!!), but it's very clean and all we would need for our 6 day stay, and it does have a full kitchen too in case we wanted to cook. Kate arrived about a 1/2 hour after us because she's coming from a different direction. We got unpacked and settled in and then took a "test drive" to see how far we were from the hospital and how long it would take (map quest lies sometimes!! LOL). Turns out we're about 15 the hospital, so we're good to go. We had packed stuff to make subs, so decided to stay in and eat that and chips for dinner. Now...... I don't know why but NONE of us slept that night. Not one out of all 3 of us!!! Is it because it's a new place? Different bed? Stress? We don't know, but at any given time when one of us would get up, we'd see the others awake and wide-eyed! At one point, I think it was around 3:00 AM, Mom says "Anyone want to play cards?" We all laughed and just waited till the alarm went off. At least we make each other laugh!!