well, maybe not the zoo

we pulled up to the zoo and saw about 50 buses and just masses of germ filled kids standing around in matching t-shirts. Decided that maybe this wasn't the best day to do the zoo. We ended up at the art museum. Air conditioned, quiet, very few snotty kids and they have wheel chairs so Bryan got to push me around. I am amazed at how little walking I can actually do without needing a rest.

Not sure about the weekend off idea. Afraid that between the diarrhea and random vomiting I can't keep my good levels of potassium and magnesium, electrolytes up.

We're going to the zoo!

After being promised a day off for about a week now I finally get a no clinic day! My numbers are holding steady and I'm not sick as a dog constantly..... it's kinda a trial run of how I'd do on my own I think. There aren't many things to do when you have as many restrictions as I do. The zoo seems like a good choice, open air, I can stay away from groups of kids, and they even rent those motorized wheelchairs! Which is a blessing because I can walk about 20 steps before I am completely winded, and I will try my best not to run into any small children that are whining.

No definite word on when I can come home. I may be able to have the weekend off but that isn't set in stone. Still day by day here.

Now were was I at.....

Not sure what my last post was about or where I left off, so I'll just start rambling.

Here goes, from top to bottom-

I am having migraines for some odd reason now. Might just be meds or something off balance in my system. A few vicadin before bed head off the worst and during the day can usually get away with just Tylenol.

No mouth sores and my throat is much better. Foods are still tough to pick out, but it's getting better. My serving size for a meal right now is about 1/2 an english muffin.

I just have general aches and pains. Even buying a new pillow and a foam bed topper can only go so far on a hard as a rock hotel bed. I sleep a lot, some napping at the clinic then another nap when we get home. I have more awake time now then before but I still can feel my energy drain out of my body.

Kinda gross but...... going on 3 weeks of watery diarrhea here. I am ALWAYS close to a bathroom and carry spare pants and underpants in my bag. Just part of the GI system getting totally trashed by the chemo and fighting it's way back.

We are done doing iv's in the room. I am off all extra antibiotics and just have 3-4 types of meds to take a day. No more nosebleeds either!

Ended up with 2 blood transfusions and 6 days of platelets. I am so thankful that people donate, you really are saving lives.

If my numbers even out a bit I can have a day off from the clinic, hopeful but my counting on that. Not really sure when I'll be set free either. So much of this is a wait and see what your blood tells us everyday, just live in the moment.

I have gotten some of the neatest gifts in my gift cake! Lindy gave me some inspirational cards, that aren't too sappy, that i love. I realized that they really don't fit right now but will be the boost I need making this uphill journey to get healthy again. I am going to assume that the person that gave me hair bands is making a joke :) The music I have gotten Bryan has downloaded and put on my I-pod, nice to have something new to me. The note pads are well used, since I can't remember I write down all my questions and stuff I want from the store and even If I take a pill at night I write it down so Bryan can log it.

Ok... nap time again for me. If you have a chance check out my friend Pateeta's blog. She has a great way of telling ya like it is.

http://pateeta-shadesofblue.blogspot.com/

deb

A week since transplant

what a week it's been. Today's aches and pains are getting better, just random and not so pleasant. I haven't gotten any mouth sores, but have gotten mucusitis in my throat which feels like really bad strep. My nose bleed had lasted for three day, hopeful that today's platelets are the golden ticket to stopping the bleeding. I am losing my hair again. I think that it is totally unfair to have to lose your hair 3 times. Soft toilet paper is my best friend right now..... I am never more then about 5 steps from a bathroom.

I am able to eat more then ice pops and juice bars again. Lots of soft, cold food and not much with texture.

ok... busy day is catching up with me so I better nap.

So you know those meth ads that show the before and like 20 taking meth and how nasty the people look....... I feel exactly how those people look. I had no idea it would be this way.

I still go to clinic every day for fluids and to see the doc. I can't swallow pills any more so I get as much meds through IV as possible. Bryan has even learned how to set up a drip here at home/hotel.

I got blood Thursday and platelets today. I have a slight nose bleed that won't stop. My white blood cell count is .2 and normal is 3.0 to 10.0. My platelets are 11 and normal is 150-400. Bleeding is a bad idea right about now.

Hey! well, I am here. hanging on. all the chemo is done and I hope I NEVER EVER have to do any of that again, still feeling all the bad side effects though. Transplant went ok, very boring and just worn out by that point. I ended up having 5 bags of cells pushed back in, a good average number. So now I am taking 10 + pills a day purely as preventative plus whatever they IV into me each day at the clinic.

Today I hit the neutropenic point which means my white blood cells are extremely, dangerously low. I don't touch anything, I wear a mask outside my door and am just super careful. My nurse said this is a low point but could continue to go down hill. I could have another week of counts dropping and transfusions needed but also just feeling like I can't go on another moment. It is a chore just to get to the bathroom and then back to bed without a rest. I hurt, I am nauseous, my lips are shredding, I am tired all the time and I alternate between sleeping and dozing.

So far now we are just doing day by day and really just getting through each step in the day is all I can focus on. I think I want to write or call but as soon as I have the thought it is too much and I am exhausted. and sad but true.... I don't even miss much from home. I want to miss my kids but I can't even get that far. makes me sad.

Chemo sucks. Just plain flat out sucks. Finished the last one saturday and I am still feeling all the nasty side effects. pretty much can not move, breathe or open my eyes without an anti nausea drug or one kind or another in my system. The balancing point is being awake enough to walk a straight line without urping.

Transplant day has come and gone! After all the prep it's pretty antichlimatic. I ended up with 5 bags of cells being put back into me and it seems ok so far. They keep telling be it'll keep getting worse this week but pick up later...... just wake me up when the better starts.

friday already

Wow has this week flown by. The chemo has been pretty rough, I am tired, worn out nauscious and have a tough time connecting thoughts. The schedule has been got to the office about 7:30 and then first round of chemo until 10. Then we get a break and return for a 2:30-4:30 chemo. Lots of anti-nausea drugs that just put me to sleep and make me loopy. I have the want to go on a walk or eat out or even shop at Target, but once I get there I just can't do much of anything. Very frustrating.

some good things.... the gifts are wonderful. Just right at the right time.

I have my own bathroom.

Bryan is driving me to and from and keeps track of all my meds.

bad stuff... no foods sound good.

there is no tivo and the hotel and clinic have different cable channels

i live in a hotel

this week of chemo feels like the first round of six months of chemo shoved into 5 days

I miss my kids, my dog and my bed

Back in the saddle again

We are back in Denver, ready for a month long stay. The first day of chemo wasn't so bad, but I know that that stuff is sneaky and will hit me later. We ended up getting a 2 bedroom/2 bath suite so it is nice to have a bit of breathing room.
So far I have-
gone grocery shopping and tried to guess what foods will actually taste good to me
gotten a bunch of new prescriptions for all the side effects
decided doctors need to have a class in personality and at least trying to act human

We also have a few emergency kits we got sent home with. Just in case I get a fever or infection we can treat it asap. I even have my own IV pole! makes it seem kinda serious, hopefully we never have to open or use any of that stuff. We have a temperature log and have to take my temp every 6 hours, food log and even a poo log that encourages the caregiver to use descriptive language... poor Bryan.


So I got a really wonderful and amazing gift over the weekend. It is called and Amish something or other, can't remember exactly so I'll call it and Amish circle of love. A group of friends created a giant cake type thing with each wedge of the cake a small package with a gift inside. There are 30 wedges, one for each day of my stay and a few extras that weren't wedge friendly. I still am completely overwhelmed and amazed.

Not sure who all contributed to it yet, but THANK YOU!!!!