Wow! Boy is an update REALLY needed. I am so sorry I have been off the planet for a while.
I finished up my 2nd I.C.E. chemo treatment and spent quite some time recovering. This treatment was for sure a bit tougher than the last. Cumulative effect I guess. I spent a good week pretty on and off nauseous even with medication, very achy and REALLY exhausted. I would get up and start a load of laundry, for example, then have to lay down for an hour and so on. Yes, I still did things like laundry because really, that made me feel good to get SOMETHING done! Even the little things!
So after that it has been progressively better each day. Still enormously tired quite often but the rest of the side effects have gotten under control. All except for the "chemo brain" which is really quite something for me this time around. I forget things VERY fast. I even left the other day and went through my normal routine of leaving the house. Closed up Dylan's crate... only to find her not actually IN the crate when I got home. What??!!!?? Fun stuff.
So now it has been a whirlwind of Moffitt Cancer Center Planning. I don't really know what I have or have not included but yes, I am getting a STEM CELL TRANSPLANT. These two chemo treatments that I have received in Naples has been in preparation for the AUTOLOGOUS STEM CELL TRANSPLANT (my own stem cells are being used as opposed to using a donor). I have done those and have been re-scanned last Friday and that scan has shown TOTALLY CLEAR!!! This was expected in some ways because originally only one lymph node was showing up on my scans and that is the one that they have removed during the biopsy surgery that I had which re-diagnosed me. But this good stuff to go into all of this with... this is not normally the case for people in my position.
My Mom and I went up on the 4th and 5th (this last Monday and Tuesday) and spent two full days at Moffitt doing my "work-up." What do they do in a work-up for this transplant?
- Pulmonary Function Test (which I might add included a blood draw directly from and ARTERY instead of a vein!!! This was not flippin' fun at all! It was a surprise to me. I have done PLENTY of these pulmonary tests and never did they include this step. The reason they do it is so they can test the oxygen levels in your system. So, they stuck a big needle in the underside of my wrist to do the draw. It hurt and burned like hell! I think they went through a million nerves before getting to that damn artery!)
- Chest X-Ray
- MUGA Scan (see the link for more description but in summery it is when they do a blood draw... this time through my port... then they mix it with what they call a "tracer" and let it sit for 15 minutes. Then they re-inject you with your blood mixed with this "tracer" and then put you under a machine with basically a plate that looks like an x-ray plate. This machine then watches the functioning of your heart for the next 10 minutes. That is my basic, some-what educated overview.)
- MEGA Labs (Oh, this part was fun. When they say "mega" it means MEGA. They filled 16 vials of blood through my port and then had to fill one directly through my vein which ended up requiring the lady who did it to stick me twice before she got it!)
- Meet with a Social Worker (They talk to you about everything! How you feel, how your family feels, financial situation, lodging and some more in between! They cover everything and I still can not believe their job range!)
THE ABOVE WAS ALL IN THE FIRST DAY. YES, ALL IN ONE DAY!
- Meet with your Physicians Assistant (Go over everything! Brief physical exam. Ask lots of questions)
- Meet with your RN (She ended up canceling with us because of two nurses being out and she was covering but came out to say hello and gave me about 15 pages of release forms to review/read till the next time. Basically a bunch of forms to sign you flippin' life away!)
- Take a 2 HOUR class on Autologous Stem Cell Transplants. YES a 2 hour class basically reviewing all of the things that they previously sent me home with a one hundred page binder to read and review.
Then we came home. We stayed in a hotel in Tampa during this stay and it was great to have my Mom along. She is going to be my primary "caregiver" while I am in Tampa along with Paul. They have split the week up between the two which seems like it will work well but we have to be open to changes all the time! It changes everyday (part of why this post has been so darn hard to sit down and write!).
Now all of my test and labs looked good according to all the folks at Moffitt that read them. This is awesome because anything could tip the scale as to whether I can even GET this transplant. So far I am good and I will stay that way! I am in.
Now, the big games begin starting on Oct. 15th!
STEM CELL HARVEST (They "take" or "collect" my stem cells from me)
Oct. 15th (Friday): Drive to Clearwater with Paul and Zane. Hopefully Zane will be game to stay with Sara, Sam, Maya and Oliver. I don't see this being too big of a push since we are going to stick him in the car for three hours in the morning. I think he will be happy to get some vigorous Maya play time! Paul and I will then drive from Clearwater to Tampa for a 2:00 appt with my doctor, Dr. Lia Perez. (Click on link if you want to see her resume)
Stay weekend with Sara and Sam but go in for appts over the weekend.
Oct. 16th (Sat.): 5pm Neupogen shot (They give you this shot to boost your cell production. After about 24hrs following this shot you experience quite a bit of bone pain. The production of your cells actually makes your bones swell. Strong pain meds will be used!)
Sunday night go to hotel to meet up with Mom who will be there the remainder of the collection time with me.
Oct. 17th (Sun.): 5pm Neupogen shot
Oct. 18th (Mon.): Surgical procedure of putting in my Neo-Star double lumen catheter. This will be used for my stem cell collection, administration of more chemo, medication, blood draws and whatever they decide! I am not at all excited about having this thing hang out of me. I still have my double port from the first round of chemo but they want more access and they say that the wide tube access that the catheter provides will not break down my cells when they collect them.
Also on this day, back at 5pm for a Neupogen shot.
Oct. 19th (Tues.): Meet with the Psychologist (they do this with everyone as part of their work-up procedure but they could not fit it in when I was just there for the 2 day marathon work-up.)
Back again for a 5pm Neupogen shot (probably by now I will be in quite a bit of pain. 4 days in a row of double dose Neupogen shots and a new catheter line placement hanging out of my chest trying to heal! Let's just say I imagine myself not being so chatty and comfy.
Oct. 20th (Wed.): COLLECTION DAY!!!! (Apheresis) Check out link for more details.
This is when they "collect" my stem cells. I go in and get hooked up to a machine that I have been told looks like a big washing machine. This machine takes my blood and separates all the cells into layers, removes my stem cells, and then the rest of the cells/blood gets put back into me. They then store those collected stem cells in the freezer (they add DMSO to them for preservation) for me when it comes time for transplant. I will be sitting still and not able to move for 6-8 hours. Yes, not able to move... this means that they tell me to not drink too much the night before and the day of and that they will have a bed pan for me if need be. I see that possibility being very high... yeah for me.
Then 5pm Neupogen shot! (Gotta boost up what they just took from me, I guess)
Oct. 21st: Possible 2nd day of collection in case they do not get enough the first day. Possibility of this being the case is rather high.
5pm Neupogen shot!
This concludes the chapter of this story entitled Stem Cell Harvest (Collection) Education.
I know, so many more questions, I am sure. Really this has been a whirlwind. Everyday something is added and changed and new to the schedule and plan. We just keep trying really hard to keep up and go with the flow.
Next chapter: Stem Cell Transplant
Scheduled admittance to the hospital (just got the call today!) Oct. 22nd (that next Friday). So, I will not even be coming home. I will go right from the hotel into the hospital. More details on what I know so far on that next time. This has been enough (really, too much) to take in. Imagine what my head does!
P.S. You can use this post to comment with questions if you have them. Please know that I will try and keep you updated and somewhat educated on the Transplant part later. But, if you have some questions on this stuff now, post them and I will do my best.