Here I am!

I've taken a little vacation from the blog.  It's been hard for me to come back to the blog because it reminds me of being stuck in the hospital.  I've just been enjoying being home and getting back to normal.  I have returned to work, although not full time yet.  I get tired very easily.  

Amy - Greg wanted to put me in a big hamster ball!

Wendy - I'm just relaxing and taking things slow.  Tell Andy to get off his ass and buy you a new bed!

Mark - It's nice to be your hero!

Nancy - It is great to be home!  I hope you are having fun on  your trip!

John - Good to hear from you!

Debbie - We will have to plan a big bubble celebration!

I'M HOME!!!!!

I was discharged yesterday, and got home around 5:00p.m.  It was the longest 3 weeks of my life.  It was so nice to drive home with the windows down.  When I got home, I checked out the new bed Greg got for us.  It is awesome!  I also said hello to the piggies (cats), but with a mask and gloves on.  We are making them stay in the basement for at least a week to ensure they do not infect me with anything.

Today I went for a walk outside.  It was wonderful to feel the sunshine and the breeze.  I will never take these things for granted again!

Mish - Sounds like a busy birthday party.  Although I think someone may be a little upset if you get rid of all (but four) her toys!

Debbie - Go Cubs, Go!  They are kicking ass - and yes, I have been watching them.  I'm hoping D. Lee and Edmonds get on a home run roll again!

Gretch - Don't worry, I'm taking good care of myself.  And I have two vigilant caregivers (Mom and Greg) to make sure I do.

Nancy - Sorry you wore yourself out - easy to do.  Glad to see that you have resurfaced.

Amy - Now that the Olympics are over, I've become a convention junkie.  I though Hillary's speech was phenomenal!

Liz - I too agree with Greg's comment wholeheartedly!  I miss you guys too!

COUNTS STILL ON THE RISE!!!

Hi everybody! My counts yesterday were .08. Today they are .31. It looks like the G.I. Jens are done with boot camp and are ready to rock! Yahoo!

Mom H - Please keep praying extra hard - I think the G.I. Jens like it. And no, Greg did not tell me about baby Joseph. He is in big trouble (not really)! Please congratulate Alicia and David for me.

Jim - Thanks, its great to know you guys are pulling for me. Say hi to Nicole and Isabella for me.

Amy - I really like Dr. Underwearhead. I think that is a cool name you made up!

Kurt - Enjoy your camping trip. It sounds like it will be really amazing. I'll take any energy you want to send my way!

COUNTS GOING UP AND FABULOUS ARTWORK

Hi everyone! Today has been an awesome day for me. I received fabulous artwork from my four favorite San Francisco kids and young adults - Thea, Leo, Ava and Mia. My sister matted a beautiful piece of art that Thea made for me. Leo, Ava and Mia each sent in their own masterpieces. They are now prominently displayed in my room.

MY COUNTS ARE ON THEIR WAY UP! I had only .04 G.I. Jens yesterday, and now I have .08. So they doubled!

Thea - I just want to thank you again for the artwork you made for me. Today, I was looking out my window at the Chicago skyline (I am on the 10th floor), and I saw a very ambitious butterfly fly right by my window. It made me think of you. Please say hello to your Dad for me.

Leo, Ava & Mia - Again, thank you for your excellent contributions of artwork. They really light up my room. I can't wait to see you guys again!

Wendy - The G.I. Jens are ready to kick some butt. I'll be sure to tell them that you are one of the good guys.

Mimi - Of course I remember Mom sitting like a god d&*%#%*! (censored for young readers) statue. I still pull that one out sometimes when I talk to Mom.

Amy - I love Dr. Underwearhead! I will keep visualizing G.I. Jens so I can get out of here! Greg and I had a great visit today.

Debbie - Congrats on conquering the blog! Don't feel bad, a lot of people had trouble posting. It is really good to hear from you.

Gretch - Thanks for the reinforcement for the G.I. Jens!

Brian - It's really good to hear from you and Debbie. Thanks for the update from the criminal side. I will always have a soft spot for those punks (especially Isiah). And thank you for reminding me of my lovely "walk" in your backyard with my cosmo. I will definitely visualize tossing back Rolling Rocks on my deck, or at your house when I break out of here!

Update

I'm still impatient to get out of here. My white blood cell count is still low, and my neutrophil (sp?) level is still zero. But my neurologist encouraged me to visualize my counts going up. Greg talked to a friend of his at work who is studying to be a nurse, and she described neutrophils as the "special forces" of the immune system. So, here is my visualization: I imagine my bone marrow spitting out new "special forces" that look like little G.I. Janes. I call them G.I. Jens. I hope it works.

Otherwise, I'm feeling pretty good.

Nancy - I emailed you on 8/18 and haven't heard from you. I hope you are feeling OK. If you didn't get my email check your spam.

Gretch - I received a card from Mary Lou Gallam. Please thank her for her thoughts and prayers.

I WANT OUT

I'm getting antsy to get out of here! I want to see my cats! I want to see my husband outside of this prison! I want to be in my own house!

OK, enough whining. Today has been a tired day for me. I slept most of the day, even though I slept well last night, although I was having some wicked crazy dreams all night long.

Amy - OK, now I will picture my neurologist with his underwear on his head. I'll have to bite my tongue the next time he comes in.

Wendy - I saved a whole bunch of hair when I cut it off. I didn't even think of making a cat toy! Great idea!

Gretch and kids - I hope my hair grows back curly. I'm hearing from a lot of people that it will. Say hello to the kids for me!

Today's Update

Yesterday was a little rough - I had a headache all day long. But the docs gave me some good drugs, and I feel good today.

I really started losing my hair yesterday. I started pulling clumps of hair from my remaining tail, and decided to cut it off. I was feeling a little sorry for myself, but I am over it now. I just looked at the cool scarves Judy and Liz got me, and it lifted my spirits. I have decided not to do a wig, just scarves. My sister is going to make me some that later, when I don't need them for my head anymore, I can use them for my neck or elsewhere. Get on it, Mimi! I'm counting on you!

I also talked to my main neurologist today, and we got on the topic of scarves. He is a very "buttoned down" doctor, but he took the time to show me a website of super fancy scarves. Talk about service! I think a trip downtown will be in order when I bust out of here.

Mark - what an uplifting song. Thank you for the good thoughts. You impressed my mother-in-law as well. I'll try to lay off the cartwheels.

Mom H - cool passage from the Daily Word. I think someone spiritual is trying to tell me something. I got the message.

Thanks Everybody!

Hello from the bubble ward! I'm feeling better. While I miss my hair, I think I look pretty cool as a bald chick. Very GI Jane. My counts are starting to come back up!!! Yahooo!!! The doc says they will rise "exponentially." BRING IT ON! I'm ready to get out of here.

OK first props go to Aunt Pat, Uncle Ken, Aunt Marilyn, and Grandma Heininger.

Aunt Pat and Uncle Ken put in for An Offering of Masses for Comfort and Healing which consists of a remembrance in the celebration of the Holy Mass every day and in the prayers and good works of the Franciscan Friars of the Atonement - Graymoor all around the world. They also enrolled me in the special Masses for Comfort and Healing, which includes Daily Mass celebrated by the Franciscan Friars of Atonement - Graymoor through out the world, prayers and good works of all Friars around the world, and Remembrance in the Solemn Novenas at Christmas, Easter, the Feast of St. Anthony, Our Lady's Assumption, and the Perpetual Novena to St. Anthony. THANK YOU!

Aunt Marilyn and Grandma Heininger put in for a remembrance for one year in a Daily Mass offered at St. Peter's Basilica, Vatican City in the Masses and prayers of the Servite Community. This is very special to me because my mom, sister and I went to Italy last year and visited St. Peters Basilica at the Vatican, so I know exactly what it is. St. Peters is a very beautiful and spiritual place. Really cool. THANK YOU!

I think I'm covered on the religious end of things.

Mom H - Things are progressing on schedule. I think I'm over the halfway mark, and am starting to really think about how nice it will to be home.

Amy - Wow, your experience flying around in Alaska sounds really cool! And thank you, I like my ears too. Lucky I don't have Barack Obama ears!

Wendy - Now I know you know this - but thinking about exercise DOES NOT count!

My Big Day

My Big Day was excellent. It began with watching the Air & Water Show. I got to see the Blue Angels close enough to see the trim on their planes. Then, my mom and I walked down to the au bonne pain and had a soda. Then, my mom got in line to get us dinner and I made my way back to my prison cell. One problem - I got lost on the way back (just as you predicted Nancy). I have not been out of the bubble ward since I checked in. Although I took the scenic route, I eventually made it back. It was fun. The fireworks were somewhat disappointing, but better than nothing.

The last two days have been a little more rough than usual. The docs started giving me a drug to boost my white blood cell count, which made my bones hurt. But they followed it up with some painkillers which made things bearable. Then, I spiked a fever, which was expected. They pumped me full of Tylenol and antibiotics, which took care of it. No big deal. Now I'm just waiting for my counts to go back up.

It was Greg's birthday this weekend. My mom bought a cake and party hats and we partied down in my room. Not the way I would have chosen to spend his birthday with him, but it was fun anyway. We ended the weekend by shaving my head. I'll post pictures.

Mish - of course I am making everyone jealous of my fabulousness - how can I help it?

Mom H - mom made sure no one came near enough to breathe on me or anything else. She was the germ police.

Mimi - sorry to disappoint - no cocktail lounge on the 1st floor. At least that would have given me an excuse to get lost ("No doctor, I haven't been drinking and wandering around the hospital with my butt hanging out of my hospital gown.")

Mark - the planes were really cool. My white blood cells have just about reached rock bottom (yeah!). I didn't have to take the stairs, but I took two different sets of elevators in two different buildings on my way back.

Gretchen & kids - fireworks were OK, but the planes were better.

Wendy - I was thinking they would make me get into one of those hamster balls, but they just made me wear a mask and gloves.

Jim - I can't wait to see Isabella again! What colors will she wear to the game?

Maura - AHHH, 708. I love 708. We left a bunch of stuff in the closet (radio, boogie board, beach chairs, but sorry, no booze), so make sure you use it well. How do you like the new decor?

Big Day for Me

Today is going to be an awesome day for me. The docs are letting me take a field trip and go down to the 1st floor (I'm on the 10th floor) for a walk. I'm so excited! Today is the Air & Water Show in Chicago, so I'm hoping to see some planes flying around from my window. There are supposed to be fireworks tonight too.

I got my first shot of Nupogen (sp?) today. So we now just watch my white blood cell count go up from now on.

Hi Everyone

Rick - I know you more than just by your name. I remember meeting you at a few X-Mas parties when the company was still under Nedwick's tyrannical rule. Since you asked, Greg will not be graduating up to heavier dumbbells - he's a bigger wimp than I am! Anyway, it is good to hear from you, rather than just listening to the funny stories Greg tells me about you and your wife. Keep giving him hell.


Mimi - I was thinking of Olympic tryouts next. Maybe our recent trip up Death Mountain has primed me for some advanced tumbling, since I almost slid down all the way on my ass.

Amy - it's so good to hear from you! Unfortunately, I'm going to have to kick my salad dressing habit because I can't have any fresh fruits or veggies for a while due to the possibility of bacteria. But I still have some of the salmon you got for me (on ice) waiting for me when I get home. Maybe we will have to discuss some dinners, since your cooking is so excellent. I can't wait. You really make me feel like a princess.

Well everyone, I'm happy to report things are still going quite well for me. My white blood cell count is almost to zero (the goal). The docs will probably be giving me a shot to boost my counts in the next day or so.

I'm also starting to get some of my handwriting skills back! I was looking at my journal entries (thanks for the book Amy) and I noticed that my writing is looking a lot like it used to. It's not exactly the same, but close enough.

Update

Wendy - I'll take reading suggestions anytime. Right now I am reading A Walk in the Woods by Bill Bryson. It's pretty funny. Don't know when all the crappy stuff will be done with my treatment, but the docs said I would probably start getting the magic drug to boost my white blood cell count on Sat. My hope is to be out of here by 8/27. That would be three weeks total in the hospital.

Mark - I knew you guys would start misbehaving as soon as you were sure that my "incarceration" was complete and I couldn't do anything about it! I guess that's why your board is so much fun.

Mom, Gretch and Kurt - Thanks for the posts. It is so nice to talk to you guys everyday.

Jean - I'm ready to work out NOW! I have been lifting my weenie 5 lbs dumbbells for exercise and I actually did some hovering today. But I'm sure I did not stay up as long as you make me (I think I count faster than you do). Greg is bringing my 8 lbs dumbbells and the Bosu this weekend. My room is kind of small, but Greg said he would help me rearrange so I can actually use them.

Signing off from the "bubble ward."

Getting Stronger Everyday

Hi everyone! Things are still going well for me here. The real challenge is the bordom. Daytime TV sucks, unless the Cubs are playing or the Olympics are on.

I'm in full "bubble" mode now. It's not as bad as it sounds - I just have to wear a mask and gloves when I want to leave my room. Visitors must wear a mask around me all the time. My biggest complaint is that when I am wearing a mask, my glasses fog over. It's kind of hot too. But bearable.

I got to take my first shower today! It was awesome. I had to go 7 whole days without, and the sponge bath was not doing it for me. I'm so glad I cut off most of my hair - that would have been a nightmare of greasiness.

Between yesterday and today, I lost 8 pounds of water weight! I was beginning to think I was going to split open like a sausage.

If you are having trouble posting on the blog - keep trying. It took me a few times before I got the hang of it. Otherwise, you can always email me at jschwemler@att.net. Thanks for all the posts and emails.

Free At Last

Just before dinner, the nurse untethered me from my IV pole (Nancy - I named it "the bitch-bag"). I cannot tell you how much easier it is to move without it! The nurse gave me permission to do cartwheels down the hallway if I wanted to, so long as I didn't hurt myself. I opted for a more subdued victory dance.

Dinner was actually good - I'm not sure if it was just the fact that I wasn't tethered anymore or if it was really good. I guess I don't care. Today has been the best day so far, so the reasons don't really matter.

I found out that 2 more MS patients are checking in next week for the same treatment. I can't wait for them to show up so we can compare notes. I only hope that I can offer the same encouragement and strength that all of you have given to me in the last week.

Again, thanks everyone for posting - it really helps to know that I have a link to the outside world.

Feeling Better

For the first time in days, I ate a "meal" (Yes, Mom, I am eating). I am feeling much better today, and hopefully, I will lose the IV pole that I've been tethered to sometime tomorrow. That will be a real thrill. I also was able to walk around a little and lift my dumbbells. Funny how the little things become really big when you can't do them.

Thanks to everyone for the posts. You guys are keeping alive!

Day 4

Day 4 of chemo is done - yahoo! It wasn't as bad as I thought it would be. I'm just so glad that I don't have to be tethered to the chemo line anymore. I'm still tethered to other lines (blood draws and other meds), but the chemo is gone! My numbers are starting to drop, so the process of rebuilding should begin in a few days. Thanks to everyone for posting. It's great to hear from you!

Thanks to Friends and Family

Nancy - it's great to hear from you! This disease really sucks, but it is really important that we endure.

Wendy - thanks for the post. And you're right - do I ever do anything quietly?

Mish - yes, please shave off all of Parker's beautiful hair and send it to me. Just kidding!

Gretch - thanks for all the positive vibes.

Thanks to everyone who has called and kept me in their prayers!

I'm ready to embark on my third day of chemo. I hear this is when it gets really bad. As if the vomiting and lack of sleep is not bad enough. But, I'm going to beat this, so all I have to say is BRING IT ON!

Progress on Day 2

Feeling nauseous today, but the docs gave me meds, and it's not so bad now. I'm still having trouble eating though. I had a Hickman line "installed" yesterday. For the first few hours, it did not feel good, and I wanted it out. But, then I went to sleep and when I woke up I felt better. I will have my second dose of chemo tonight. The docs and nurses have been very helpful and attentive.

Dealing with Hair Loss - The Mohawk Solution

Decided to post a little early. 

I've had long hair since I was 9 years old.  I decided that as long as I'm losing all my hair, it will be on my terms.  And when will I ever have another chance to see how I look with a crazy haircut?  Its now or never, so I went for it - a mohawk.  

My husband, Greg, was holding my hand the whole time.  I will never say it was easy, but he made it bearable.  Many thanks to my friends, Judy and Liz, too.  Liz breezed into the salon minutes before my appointment with a gift from both of them which included a bottle of wine, beautiful scarves, a "hat", and a poster-board collage of different mohawk styles I could choose from.  I had been so wrapped up in the thought of having short/no hair, that I hadn't thought about how I wanted it to look with a mohawk.  I used a combination of the pictures in the collage for my new hair, and it didn't turn out that bad.  Thanks again, guys.

The moment I felt the last of my hair being cut off was heart breaking.  But, with the constant reassurances from Greg, and the kindness of friends and family, I made it through.  Now I just enjoy the fact that I have short hair - it's much easier to deal with.

First post will be August 6, 2008 or after.