Wednesday, October 27, 2010

Days -4, -3, -2, and -1

This is what the countdown is like for a stem cell patient. You start out in negative numbers from the time you are admitted and the amount of negative numbers depends on the amount of days the chemo in fusions are set for. For me this was -6 days.

It is day -6 now which means that tomorrow is day "0" for me or my new "birthday"! I will have these cells put back into my body tomorrow (who knows what time!) So, tomorrow is the day that I actually get those stem cells back and they have to get to workin' really hard for me.

On the day of stem cell "harvest" they were able to collect mine in just one day. Their goal is to gather between 2 million and 5 million. Well in that six or seven house span with me hooked up to the machine, they were able to gather 4.7 million!! This was a good day for us.

The Harvest (Stem Cell Collector Machine!)
You can see some blood starting to move through the tubes.

In and Out of my Neo-Star Catheter Line

In and out of the tubes.

The beginning of my little stem cell babies! Much more to go!

Hangin' with the machine (cause I can not do anything otherwise!) I really only got up ONCE in those 6 hours to pee!!! Now if you know me well, that never happens!

Mom waiting and working.

Stem Cell Babies. These were it. You don't know when you leave if you have gathered them all. If I had not I would have had to come back the whole next day and do it all over again to add to them. SO happy I did not have to do that!!

Admitted to the hospital (the next morning when Mom and Zane came to visit)
Checking out my pretty lame view from the window.

Zane testing out some equipment in my room.

Zane jumpin' on the guest bed and Mom clearly needing some exercise. :)

One thing I decided to get for Zane during my trip away for him to have is his very own camera. Just so he can take some pictures of anything he wants while I am not with him or home. This started at a Auntie Lala camera that he sent but we kept having difficulty getting all the parts together and I still felt like it had too many buttons for his little fingers. So I ordered this one and he loves it. It has rubber padding all over it too so it can take a fall.


Monday, October 25, 2010


Many of you want to know an address to send things to. Please keep in mind that I can not have any flowers or plants or anything with moss attached, etc. sent to me. Nothing alive as well as no fake plants. Also, you can not bake anything and send it.

These precautions are because of germs and bacteria that are at this point life threatening to me.

So, the address is:

Moffitt Cancer Center
12902 Magnolia Drive
Tampa, FL 33612
Room 4731 - 4 West
Attn: Danielle Holimon

Saturday, October 23, 2010

Day -6 and Day -5

Checked in to the hospital yesterday, but late. My bed was not ready for me till about 4:30pm so we got here around 5pm. It was all very weird. It was like "come on it and get set up, but we are not going to show you around or anything." So it was uncomfortable. We had to ask our way through it. Supposedly this morning they told us that is not how it should have been. Not sure I totally believe them yet. I didn't start my chemo till about 11pm last night for a 3 hour infusion of Carmustine (BCNU) (the "B' of my regimen called "BEAM").

I was awake through most of it and fell asleep at the end. Paul is staying with me last night and tonight. I got to see my Zane-Man last night!!! He is just the most adorable thing in the world to me!!! It was so good to hug him, kiss him, touch his hair and look into his eyes. Looking into that kid's eyes makes my goals get even more focused.

Checking in last night was hard. It was hard to unload the car and then walk into a building and know that you will not step back out for 3 weeks! Paul was helping me move in and as soon as I stepped foot in the lobby I had to turn around and walk right back out. It was hard to breathe and I started crying which I have surprisingly been staying pretty calm through the rest of this last week, but walking in here for this was a different story. Pretty understandable, I know. I finally got my ass through those doors and then was just overwhelmed, frustrated and weepy through the check-in and settling into our room. I just didn't know what to do. It was weird. They showed us to our room and pretty much left us there for 30 - 40 minutes without anyone coming in.

Then, "POW!!!" met with:
Physician's Assistant
Oncologist on call
Oncology Nurse
Was wheeled down for a in depth chest x-ray.

But the first night was ok. I was up late but once I slept I slept till about 8am. Pretty good for a hospital. Of course I had to pee about 3 times but I never count that.

Zane and Mom are about to come up here for a visit. Then they are heading back to Naples. She will come back on Sunday night to spend the week with me and Paul will be heading back to Naples Sunday night.

This morning I am getting an infusion of Cytarabine ("A" of the BEAM regimen) and the Etoposide ("E") over a three hour total infusion. Then this evening I will get that again. I will repeat this dose twice a day through Tuesday.

Other little side notes:
- They give me a new toothbrush every two days that is super soft bristles. This is do that my mouth does not get scratched up because Mucocytis is really common with this regimen. (mouth sores, infections, sores in your esophagus, etc.)
-They give me big bottles of saline rinse for my mouth to swish with every time I am in the bathroom to keep my mouth clean for the same reasons
-I have to pee in a plastic "hat" every single time. They measure my output so they know that the chemo is flushing out of my system and my bladder is handling it.
- If I poo, (yes, I know... but it is part of it) I have to put rubber gloves on to wipe because of my immune system will be so low I can not deal with possible bacteria from that.
- They do my vitals every 4 hours (day and night) (blood pressure, temp, oxygen levels, listen to my chest)

This is just the beginning. This will only get more yucky FIRST then of course... it will get better. In the meantime, this sucks. I have awesome support though and I love you all so very much.

Tuesday, October 19, 2010

Pain Management

Yesterday I went in for the catheter line placement. It turned into a long ass day for sure. My appt. was at 10:30am but the Physician's Assistant who places the lines was running late because the other PA called in sick. SO.... I ended up not in my surgery until 1:30pm!!!! Waiting is not where I am strongest for sure. I totally understand the whole being sick thing and I sure appreciate that someone would not come in sick but man, they should have called me too and not had me come in till 2 hours later or something!

Then we had some issues with deciding on placement. I still have my port on my right side which I guess is the side that is best for a catheter line because the line does not have to travel as far around my thyroid and such (I am not totally clear on the path that this catheter takes... I sort of tuned out sometimes). Also, I have had radiation to my left side so they felt that some scar tissue may get in the way of proper placement. They would not know till they got me on the table and under an ultrasound. So it was possible that during the surgery they would have to stop and call my doctor and then decide to take my port out. This was a shock and a panic for me because I use my port quite a bit so that they do not have to draw blood from my finicky veins in my arms and also, some of you may remember, but getting this port in and healing from that was quite a project for me.

So on to the surgery we went and I was getting what they generally call these "twilight" drugs. Well, that can mean many different things but the end result of that is that I was AWAKE THE WHOLE TIME and FEELING IT!!! They used lidocaine (sp?) to numb up the area but when they were putting the line in it really really hurt like crazy. It is absolutely totally F'd up to be awake for me during things like this. I was being pumped full of drugs the whole time but for some reason they were not making me fall asleep. F'D UP!!!

So, in the end they placed the catheter in my left side and did not have to remove the port. But, holy crap do I hurt. This thing is painful right now to say the least!

So, then I was all pumped up with drugs and HUNGRY!! I was not able to eat or drink the whole time because of the procedure. We quickly ate something in the cafeteria and then on to our "catheter line care training" and another two neopogen shots. We did not leave Moffitt till about 5:30pm and we were exhausted!

Mom has been taking care of me wonderfully. We got back to the hotel and then had to run out and get us some groceries and get my antibiotic prescription filled. She also picked up some Indian food which was so yummy and good! We needed some good food after that day!

Sleeping was difficult because I can not really move or even swallow without this thing hurting like crazy. I am managing on a lot of pain meds which really don't always make me feel good either in other ways. I would wake up though like clock-work every 4 hours which is exactly when I could take more pain meds.

Now today we are off soon to go back to Moffitt. They put all of their stem cell transplant patients through a 1.5 hour psych appointment. That should be lots of fun today. Then at 5pm... two more shots of the neupogen.

Tomorrow is the day of "harvest."

***Many of you are wanting the address to Moffitt for when I am in there which I will be looking up for you soon. Please know though that when I am in the hospital I can not receive any flowers or plants at all. They will not even let them on the floor. It is because I will not have an immune system at all and could not battle the bacteria that travels on plants and flowers. Also, I will be on an immuno-suppressed diet which I will explain more later but it may be hard to send me food and definitly nothing that is homemade. I know, such a bummer.

Sunday, October 17, 2010

Love Me Two Times

So it is sad the weekend is over. It was fun to start into this by hanging out with friends in a familiar place. Going to Sara and Sam's house is like going to a second home and so it has not all felt "real" until tonight. Well, maybe I should say when I had to stand in their driveway and wave goodbye to Paul and Zane as they left to return to Naples.

Friday was a doctor's appointment but really all it was for was for me to sign about 20 pages of consent forms. They had given me copies previously to read on my own which I did... mostly. Really it is a bunch of stuff that you really don't want to know. All of the terrible terrible things that could go wrong and all of the awful things that these drugs can cause... don't want to hear it! Because really, what am I going to do? Change my mind? So I inked my signature on those babies really quickly and handed them back.

Saturday we woke up slow and then me, Paul and Sara took Maya and Zane to the new Glazer Children's Museum in downtown Tampa. It was pretty cool but REALLY super packed. This is really the kind of place that Sara and I are used to doing with our kids during the week because it is never as busy but when we all get together we end up doing these things on a weekend and boy oh boy was it crazy crowded with totally hyped up kids! It was good to take them there and have an adventure but it was a overly stimulating experience.

Then we loaded the kids up in the van and we all trekked to Moffitt for my first Neupogen shot. Sara hung out with Maya and Zane in this cool garden that they have there while Paul and I went up to get my shot. The shot turned into two shots. Wonderful stuff. I knew that I was getting double the amount of Neupogen that I was normally prescribed after my previous chemo BUT I did not realize that that actually meant that I get two shots of it. They can not actually fit the amount of Nuopogen that I need into one syringe. THEN they tried to tell me that they needed me to sit there for an hour to make sure that I did not have any reactions to the drug which really pissed me off. First of all, they did not tell me this in my schedule... Second of all, because of that we did not plan for that. Now we had two very tired and worn out kids hanging out outside waiting for us and quite frankly I was so darn worn out that I could not imagine mustering the patience to sit there. So I told her that we had two kids waiting for us and that that was not possible. I think she saw the exhaustion in my eyes and so knowing also that I have successfully had this drug before, she let me go after 15 minutes. Whew! I kind of felt bad but I really did not want to sit there for that, especially knowing full well that I was not allergic! At this point in my lifetime I have probably had 30 to 40 of these shots!

So today we woke slowly and hung out. I did wake up with the beginning of the bone pain that the drug causes. I get it quite a lot in my hips. Also my neck and even my cheek bones. It also give me quick a kicker of a headache. So Zane and Paul took off to get back to Naples and Sara drove me to my Moffitt appointment for my next shot (which are at 5pm each day). Then we met my Mom at the hotel we are staying at until I get admitted to the hospital this coming Friday. The three of us went out to a cozy Vietnamese dinner and now Mom and I are crashing out. So tired.

Tomorrow I get to wake up and not eat or have a drop of water. I will arrive at Moffitt at 10:30 and have the catheter line put in. They give me "twilight" sedation. Then we will learn how to care for the catheter, come back to the hotel and rest off the sedation and then back to Moffitt again for a 5pm Nuopogen shot.

I miss my boys tremendously already. Tomorrow we have a potential skype date and that will be good.

Love to all of you out there and love those kind words, thoughts and focus. This ball is rolling forward and it really didn't sink in till today. It was a hard evening.

Here is a picture I took with my phone at the museum. They had a pretend veterinarian's office and Zane really though it was cool. Eventually he put on a lab coat and took this little kitty's vitals. It was just so damn cute!!!!

Friday, October 15, 2010

Ready, Set, GO!!

We spent last night at my Grandad's house having a wonderful dinner and a quick swim. My last night at home with everyone for awhile. I am glad we got to chill and relax a bit. I was really mostly packed at that point yesterday so it felt good to be able to do that without worrying anymore about packing!
We are off today for the first day of a long adventure. Paul and I are packing up the car while Zane still snoozes away. We are off so early because we need to make it to Clearwater and drop Zane off with Sara and Sam before my doctor's appt. today at Moffitt at 2pm. Zane is SO EXCITED to see Maya and Oliver!!!

Paul and I will be spending quite a bit of time in the car today. Not really my favorite. Bleck!

Thursday, October 07, 2010

Work-Up & Stem Cell Harvest

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!)
- 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.