Thursday, November 18, 2010

Bye-Bye to External Tubing

I am getting the catheter out today. I can not express how anxious I am to be rid of this.
It has served me well. But... bye-bye.

They do it only under local. Just the lidocaine shots in my chest. Then they yank the thing out.
I have to say... I am nervous. But it will (hopefully) be quick and go without a hitch.
My luck with these things has not shown in my favor in the past. Today WILL be different.

My appt. on Tuesday... my P.A., Aaron, said that he sees absolutly NO REASONS they will not give me the green light at my appt. on Friday that I can go home. My brother comes in tonight and stays till Sunday. So, Mom and I plan on heading straight for Naples after we drop him off on Sunday morning for his 11am flight.

Homeward bound...

Wednesday, November 10, 2010

Me Now

For any left who still want to know the address to the apartment...

10420 N. McKinley Dr., Unit 8101
Tampa, FL 33612

I don't know how much longer I will be here. BUT the big news is that I have engrafted which means that my lab numbers are showing that my cells are starting to reproduce on their own. This means that the transplant has taken hold!

I have not posted in quite awhile even though I really wanted to keep this up through all this, I have not felt inspired to sit down at my computer much at all. I have been in and out of the hospital for various reasons but I have now been in the apartment for quite awhile. Although being in and out of the hospital was a hassle... I would not have changed it. I do think they let me out a tad early but mentally getting out of there was a GOOD thing. Even if it may have been a short break in between visits... it helped. I have gotten blood, platelets and fluid infusions along the way.

They are now giving me two days in between clinic visits since my lab work is looking so good. I have a clinic appointment tomorrow but on Friday I have an appointment with my doctor which will decide on that day if I get to go HOME and be home for Thanksgiving. No matter what I will have to come back on the 29th for a PET Scan (my +30 day out of transplant scan) but I would rather head back up here and get a little taste for my home and my boys.

You can't imagine how deeply I miss being home and all that home is. I am so homesick. I have never fully experienced this feeling. Not to this level.

Paul and Zane came up this weekend and it was the best feeling ever. They arrived on Thursday and left on Sunday and I just could not drink up enough of them.

I am tired pretty much all the time and I still get random waves of nausea. This recovery is not at all like the last chemo treatments where every day I could really internally see day to day improvements. It is not that I am not improving... it is just not quite at the pace I am used to. But really... who should ever be "used" to that?

I have gotten cards and gifts and so many wonderful "love" packages. Thank you to all of you. I have not had the energy to personally thank you but know that I am soaking it up and love it and you!

This week I have a big visit to look forward to! My brother is coming to visit! He is arriving on Thursday and not leaving until Sunday! Yeah!! He will get to come to Moffitt with me and hear whether or not I get to go home and leave this too quiet and boring life here. We will hang for the weekend and maybe... just maybe my Mom and I will be heading home on Sunday after Ben leaves. Oh please!!!

OH!! and also know that maybe sending something to this apartment is not a good idea at this point. I can not forward my mail from here so when I leave I leave whatever mail comes after my departure. You can always send it to my home though. If you don't know that address than I can personally send you that one!

Love to all.

Thursday, November 04, 2010

Day +7

Back to the clinic today. We were here for about six hours yesterday.
Today I am getting fluids as well as some more platlets. They are back down to 10. They are also starting me on my neupogen shots today which is sort of a love/hate relationship. They make my bones hurt but that stuff is going to kick in and start helping my produce cells which... In turn will make me feel better. So GO neupogen!

This morning I woke up feeling not so bad. Was doing well keeping all my meds down, but as we went to leave the apartment I started getting incredibly light headed. Then as we got to the car I ended up yacking all over the parking lot.

So we are told... This is all part of it. Yuck.

Today Paul and Z are coming. Zane will stay one night and then he and my Mom will head back to Naples. Paul will stay till Sunday which will be awesome. We need some good quiet time together. Probably we will do nothing to exciting given how I feel and also, whenever I walk out of that apartment to go ANYWHERE I have to wear a pretty darn uncomfortable mask.

So I have done this whole post on my Mom's I-pad and this is just too cool. One of these babies could make blogging a more frequent thing. That would be cool. I think I will put one of these babies on my wish list and just dream. Heeeee!

Mom has had quite a job to do taking care of me. She is totally in charge of all my medications which I might add is a gigantic ziplock bag full! She made us a wonderful dinner last night that really hit the spot for me. She broiled some salmon and black beans and rice. So good and everything that I had felt like I was missing in my diet... Especially protein.

The biggest problem now is the mucositis or the break down of your mouth, esophogus and g.I. Tract. This is all side effects from chemo drugs. I am lucky that I don't have any in my mouth but I have a large soar or many of them in my esophogus. This makes anything really hard too swallow. Basically to eat, I have to force myself and every bite right now results in sharp pain. They have given me some pain meds to help which they do help but still, when I swallow anything it is still there. Ughhh.

Excited to hug my boys tonight that's for sure.

Tuesday, November 02, 2010

Day + i don't remember anymore

I was released from the hospital on Friday and then re-admitted less than 24 hours later. I could not keep anything in my stomach including the pills that I need. I would just throw it all up.

BUT... Friday night we were able to celebrate Zane's birthday together as a family. Paul and Zane spent the night Friday and then went back home on Saturday. It was nice to be able to not be in the hospital around Zane for a bit. Even though I felt incredibly rotten.

So, I have been back in the hospital and it has been a baby step process for me to transition from IV antibiotics to oral antibiotics. Over the last couple of days we just try one at a time. My last one to try oral again was this morning. So far so good although I feel a bit nauseous.

My mucositis has kicked in big time although not actual soars (which is huge)! But my mouth constantly feels like a really dry port-o-let. No matter what I do, drink, eat or brush it always stays the same. This dry and yuck feeling flows all the way down to my stomach. My stomach can best be described as feeling like I have a small fire in there.

It seems to be a constant battle with my brain and stomach lately. This will last a while longer until my counts go up.

Today my platelets dropped to 10 so I had to have an infusion of blood platelets only. The other day I had had a blood transfusion of red blood cells. From what I hear, these will not be the only ones I will need till this is over.

So, we are heading back to the apartment today since I have kept all my meds down. This is a confusing decision really. A big part of me is nervous cause it didn't work out very well this last time. But on the other hand it will be nice to just veg out and not have someone taking my vitals every 4 hours.

Mom has been great!! A lot of pressure is on her to take care of me once at the apartment. It is crazy but she is not allowed to leave me. Which means that, for example, if we need some groceries she has to run and get them during my daily clinic hours or I have to go with her. Yes, they will let me go with her but as long as I wear a duck-bill mask. I have to wear one of those anytime I leave the hospital or apartment. She has to make sure the place is constantly wiped down. I have to have my own bathroom that no one else can use. Cooking meals is a lot of pressure when you are feeding someone with an immuno-suppressed diet. She also has to be always at the ready with a "clamp" of sorts JUST IN CASE something should happen or snag my catheter lines. Whew!

So between the two of us I think we are a bowl of bubbling nerves.
But we are doing it.