Sunday, October 24, 2010

UCLA

Went to see Dr. DeVos at UCLA on Friday and it went pretty well. Any fear that I had about transplant are pretty much gone, it really doesn't seem like it is going to be that bad. Basically what happens now is that they are going to send me for another PET scan to see how much the chemo has shrunk my enlargements. Then I will do one more chemo and then we start harvesting my stem cells.

To give you a little back ground on harvesting...what they use to do is put you under and take 100 aspirations out of each of your hips. What they do now is give you some pretty nasty chemo which flushes the stem cells into your blood stream, then they take take your blood (lots of it) and "wash" it...meaning, they keep the stem cells and freeze them for use later on.

Once we have enough of the stem cells (this may take multiple attempts) I will be admitted into the hospital and given some more nasty chemo which is going to kill all of my white, red and platelet cells (this is the reason I am admitted into the hospital - no blood = no immune system!). Then they give me a day of rest and after that they thaw out the stem cells and infuse them back into the ole body :o) They do this as a blood transfusion and the cells graft to my bones. All of that is about a 10 day process. Then I get to stay in Hotel UCLA for about another 2 weeks while I get stronger...until my immune system is good enough to go home. Dr. said that it would be about 3 weeks of hospital stay time..depending on how I do.

So far, they are pretty impressed with the way I have handled the chemo regimen that I am on. It is called ICE and evidently it is pretty damn brutal and most of the time patients are hospitalized when being given it. This is also a good thing because since ICE is so brutal, they may not have to give me such a nasty chemo to get my stem cells...and I should tolerate whatever they give me pretty well. Sooooo THAT is why I was the chosen one to get cancer twice...because I can handle it! LOL

So far, that's all I know. I will get a call from the transplant coordinator and I will get to go on a tour of the facility and be given a book of stuff to go over prior to transplant...Dr. says I will be an expert before I even show up :o)

Steelers are winning...YAY!

xoxo - Joni

Tuesday, October 19, 2010

More random thoughts from Joni

I have been having a lot of my weird thoughts lately and they are perfect for this entertaining little bloggy thing....haha I didn't want to take away from the Team Joni dedication I posted earlier, so this one is dedicated solely to the weird crap that pops into my head, or that happen to me! So, as you read...don't say I didn't warn you....this is VERY random!

Showering.....
1. Being bald can cut your shower time in half.

2. So why is it that I wash my "hair" with shampoo still? And no, I don't condition - that would just be weird!

3. A pea-size drop of Pantene goes a looooong way when you are washing a billiard ball.

4. I still do the "eye shield" as to not get shampoo run off from my hair in my eyes...really?? Old habits die hard!

5. I have not shaved my legs or armpits in two weeks!! And I don't need to - hahaha

6. When I turn the shower off, I still go to wring my hair before grabbing the towel to dry it!

7. I sooo want to do the towel wrap on my head when I get out, but my head is already dry and it is not necessary. I think I will start doing it again, just for the hell of it!

That is enough about my showering habits!

More weird thoughts...

I am thinking about being Uncle Fester for Halloween! All I need is a long coat and some black circles around my eyes and I am set! Wait - I should be Auntie Fester...duh!

See...Perfect!! And it won't cost anything!



Can you believe I am getting use to the bald look?? I wore my wig last night for the first time and I think I looked funny...I am not use to seeing myself with hair! What the hell! I like hair and I really want to have it again...so these thoughts need to GO AWAY!!! eeekkkk!!!




Other stuff....

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I need to give a BIG shout out to my friend Magaly!!! This last weekend she cut her hair off and donated it to Locks of Love - for the second time!!! She cried the first time and hated her cute haircut so I am soooo proud of her for doing it again - and this time she went shorter and looks just as cute!! Thank you for donating to such a great cause my friend!!!

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I am officially going stir crazy and no longer feel the need to "nest"!! I even offered to write my a college paper for my nephew or stuff envelopes...I am sooo freaking bored with this being at home crap! I guess I could clean house, but who wants to do that? I would rather put hot pokers in my eyes! hahaha

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I told Bret this morning that I am going to bake something today. I better run to the store and grab one of those "just add water" brownie mix things! I wouldn't want to try to actually do something from scratch, I don't want to hurt anyone!

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I will wrap this nonsense up with something that actually pertains to this cancer business. I have my appointment with UCLA on Friday...so we will see where we are headed with the bone marrow transplant. I am almost done with my chemo, so I would imagine a bunch of testing is going to be done pretty soon to see how much I kicked cancer's ass. Then we move forward - I have a feeling that I will be in isolation during Christmas, but we will look at it this way, I am getting the gift of life and not just another sweater! :o)

xoxo - Joni

Today's entry is dedicated to.....

TEAM JONI!!!!




Which includes everyone that walked with the team, donated to the cause, volunteered at the event, and that those that have been sending their thoughts and prayers. I cannot begin to say how humbled I am by the amount of support that this team has generated and given! A lot of people have told me lately that I inspire them, well Team Joni inspires me! To date our team has made $4230.52 for The Leukemia and Lymphoma Society! As team captain, my initial goal was only $1500.00 and I thought with such short notice that we would never make it. All of the sudden I am upping the goal twice to $3000.00...and Holy Cow - we broke through all the way past $4000.00!! AND - the best part is that it is not too late to donate! If anyone missed the walk date, that's okay, you can still take part and donate all the way up to December 31st! Here is that link (In case you missed it - lol) http://pages.lightthenight.org/ocie/InlandEm10/JKennedy

This by no means is a one-time thing! Team Joni has now been established and next year our initial goal is going to be 10K!!! And I know we can do it, if we could accomplish so much this year with such a small amount of time, I know we can get to 10K with no problem! And next year the wheelchair can be used to carry snacks - not me!! I have so many ideas for fundraising it's unreal!! One of which was inspired by the Cowden kids...they each raised their own $100 by taking fliers to school and writing letters to family members out of state - I think next year we should have a letter writing/flyer making workshop day with all the kids on the team! We will call it The Cowden Workshop!! :o) (can you tell I am just a little excited about the possibilities of our team's potential??) hehehe

I must say that the planets must have been perfectly aligned on October 16th, because it was 2 days after 3 days of chemotherapy and for all intents and purposes I should have been sick as a dog....BUT I wasn't!!! I did rest all day on Friday and Saturday, but once Saturday night came I felt amazingly good! I would not have been able to walk the 2 miles (thank goodness for garage sale wheelchairs!!), but I was able to hang with my team and last through the night. The power of Team Joni was definitely a factor in that!!

I could go on for days and days about how proud I am...but I will stop here and let you enjoy some of the photo's from the night! I have a lot more, so if anyone wants copies, let me know and I will email them to you!!




























THANK YOU TEAM JONI!!!!

xoxo - Joni

Wednesday, October 13, 2010

Bald is....different

Last Friday Bret and I went out to dinner at the Big Cheese and I wore a beanie on my head. The beanie was really itchy because my hair is falling out so much and it itches whenever I put something on my head. So, Bret told me to take it off and be comfortable (he is being SUPER supportive!)...soooo I whipped that thing right off of my head! In a very crowded restaurant...and I really didn't care! The only thing that bothered me was that little kids stared a bit, it didn't bother me so much as I was worried about scaring them. But, it is what it is so I muscled through it. After dinner, we decided to go to a local bar and watch the band play and have a couple beers (I had 2). I sat there the whole time we were there with my bald head and it wasn't an issue. We actually had some people talk to us about it and they complimented me on my good attitude about all of it...which is nice to hear.

Saturday Allison, my mom and myself went wig shopping and I got two of the same one in different colors. We had a good time trying all kinds of stuff on my head! I think we picked some pretty good ones. Here is a picture of one of them...

I cut some wispy bangs on this one which helped for the hairline area...and I really like it. Now, if the rest of my hair will just fall off so I can wear these wigs comfortably, I will be ready to rock and roll! Just can't do it yet because they are uncomfortable due to the itching and pain of my hair falling out. Speaking of which, here is what I looked like this morning! Dramatic difference from last week huh!! eeekkkk!! I am losing the GI Jane look and going straight into Daddy Warbucks!!


Chemo round 2 started yesterday and so far, so good. I have my take home pump attached right now and I feel okay...tired, but okay. I know that by tomorrow I am going to be feeling a little crappy and Friday will be worse.....But this is saving my life so I can deal with it for a little while!

Light The Night!
OMG - I cannot believe that we have reached over $3000.00 I never thought that we would get this far and I am sooo excited! Next year I am setting the team goal at $10,000 and I know we can do it. We only had about 6 weeks this year since I signed up late, next year we will have a lot more time so we can do it for sure! For this years walk, it is not too late to donate http://pages.lightthenight.org/ocie/InlandEm10/Teamjoni This is the link to the team page, you can click on individual walkers and donate in their name. My new goal is to get every walker to their $100.00 goal so they can get their balloon and Team Joni can light the night big time! We have around 35 walkers on our team and it would be awesome if we were all lit up! So, if you plan on donating - even $5.00 - please choose an individual who has not hit $100 yet. THANK YOU!!!

Thank you all again for your love and support!!!

xoxo - Joni

Wednesday, October 6, 2010

Bald is beautiful dammit!

Well, by the title of my blog I am sure you can guess...YES I am bald now!! My hair started falling out a little on Saturday and has gotten worse as the days go on. Once it started, I let Allison know that it would soon be "time"...meaning time to shave it off! You should all know me by now and know there is a story to everything I say...so I will now take you back 18 years! (HA and you thought you would see pictures of my bald ass right away!!! hehehe)

So....Once upon a time I was 17, diagnosed with cancer, had a bestie that stood by me no matter what. What always amazed me was that she was so strong and she stayed strong with me throughout everything...Allison was my rock. When I was in the hospital, she was there...eating my beef stroganoff so the nurses thought I ate ;o)and calling my nurse when I wouldn't call them. Al was there and no matter what, I could count on her...and now 18 years later, I can count on her again!
Okay...now we will talk about why bald is beautiful! My damn hair started falling out in chunks 2 days ago. I told Allison that it was time for her to shave it and she let me know she was ready....and tonight ended up being the night! Soooo we pulled the trigger and now..I have no damn hair!

I am not scared, I am not upset...I am just a litle bald! I am beautiful, I rock and I will get through this!

xoxo - Joni

Monday, October 4, 2010

And...we produced a baby!!!

As you all know from my last post, my Kelly has been trying to evict a little person from her womb for a week now....and it finally happened! Now, in true "Joni form" I will tell you all a little story of how my nephew finally came into this world! Let me take you back to Saturday morning...

I was getting ready to finally go wig shopping and Kelly texted me to let me know that her tooth (that had been infected for a few days) had turned into an abscess and plan Z was going into effect - Call the Dr. tell them about the tooth and see if they will induce her now that she was 2 days over due BINGO!!!! It worked - YAY!! So, I called off the wig shopping so I could head on out to the hospital. Now would be a good time to let you know that after I showered, I brushed my hair and it started falling out that day - perfect, now that I cancelled the wig shopping.

I got to the hospital at 12:30 and Kelly and her hubby, who is also Kelly, were already set up in a little room. This room was like a broom closet that was an afterthought to turn into a room..no really it was tiny with no windows! Thank god they moved us to a real room about an hour later. And this, room 146 , is where we would wait...and wait..and wait some more. About 4:00 the doctor came in and broke the water and Kelly got to have a taste of "real contractions"...about 45 minutes later I was calling the nurse and saying its time for the epidural! This made miss Kelly a lot happier and we were ready to wait...and wait...and wait some more! We did a lot of chatting and TV watching while we waited.

At about 2:00am Big Kelly went home for a little bit and the nurse told Kelly and I to take a nap...yea right! We managed to turn out the lights, but still talked all night! At 2:45 the nurse came in and checked her and we hit 10cm...I was about to jump up and do a happy dance!! BUT...we still had to wait for the little guy to labor down into position....geez there sure is a lot to this birthing business!! Sometime around 4:00 Big Kelly came back, Little Kelly started pushing and at 5:15 we had a baby!!! And I got to cut the cord!!! :o)

Introducing Tanner Cortland Smith, born 10-3-2010 at 5:15am, 7lbs 8oz, 19.5" long



Isn't he friggin cute!!!! I was going to post more pictures...BUT since we were up all night and Kelly had just pushed a baby out - we do not look all that hot so I will save that for another time, and better pics ;o)

Other news:
I already mentioned that my hair started falling out a little on Saturday...well today it decided to go nuts and it's driving me crazy!! It is not making me crazy because I am losing it, but because it is messy and gets all over the place, and because my damn head itches!! I am pretty sure that I will have had Allison shave it off by the end of the week. A lot of people are asking me if I am okay and the answer is yes! I am great (because it is not chemo week and I don't feel like shit) my hair is just falling out. I see it this way - it is part of the process and every step I take gets me closer to getting better. And hey - bald is beautiful, right?? Honestly, I think that the fact that I have done this before helps me get through it this time. So BRING IT ON BALD FAIRY - I'M NOT AFRAID OF YOU!! hahahahaha (EEEEKKKKK now that I talked crap to the bald fairy, I had better get to that wig shop!)

Light the Night...what can I say but THANK YOU to everyone...and I know I say that in every blog entry, but I truly am thankful for all of your donations. Team Joni is kicking ass and I can't wait for the walk!! We are well over $2000.00 now...AMAZING!!

http://pages.lightthenight.org/ocie/InlandEm10/Teamjoni

The link above is the team page, if anyone would like to donate, please either make a team donation, or chose a walker that has not hit $100.00 yet. Each walker that gets at least $100.00 donated gets a shirt, a lit up balloon and other amenities at the walk. I would LOVE to see every member of Team Joni with a lit balloon!!

That's it for today...Have a great night friends!!

xoxo - Joni

Friday, October 1, 2010

I think I am in labor!!

Happy Friday everyone!!

So, yesterday I decided that since Kelly and I are both stuck at home doing nothing, that we may as well do it together and I went to go see her. Yesterday was officially her due date and that girl is 10 months pregnant! It is time to get that little boy out of her, and we are just the team to do it...right? WRONG! Not yesterday anyhow!!

We decided to go to the mall and walk around...which eventually led to the spending of gift cards and dollars...we are NOT a good influence on one another when it comes to shopping. You should see the bear outfit that my little nephew got yesterday. Oh, yea..you will notice that I will not be using his name - I know it, but I'm not telling because I like the head that is attached to my shoulders and I do not want to part with it anytime soon...you will know when the rest of the world knows :o) Neener, neener, neener!! hehe

Anyhow, we walked Barnes & Noble and then the Montclair Plaza - which is like a graveyard now a days - then Borders. Both of us got tired by the time we were at Borders and plopped our asses on the floor and read through baby books. We are a team of cancer patient and preggo chick..if we want to sit on the floor in the middle of the store - we will! We spent our fair share of money and decided to go home. I did hit every pot hole and speed bump in my path...we were desperate! We sat on the couch for a while watching TV and coming up with things to do to get this boy out. I wish I had a video camera...that poor girl did squats, jumping jacks and crunches while I laughed my ass off! Did I mention that we are both into instant gratification and the fact that 6 crunches did not produce a baby kinda pissed us off? LOL So, we ate a drumstick..nothing! Then we decided to go for a walk in 900 degree humid weather....still nothing! The only thing that did was burn off maybe 1/4 of the drumstick that we had each just inhaled.

What the hell, does this kid not WANT to come out? We have a theory that he knows we are getting irritated and he is afraid to come out, so we did say a few nice things to the tummy to assure him that we are not mad...its okay to come see us! Yea...you guessed it..THAT didn't work either! At this point, I had been there for like 8 hours so I decided I had better get on the road home...knowing full well that I would get alllll the way to my exit and she would call and say "It's time" and I would have to turn around...NOPE!! NOTHING!!! hehehehe

I woke up this morning and my back is killing me!! Evidently our efforts have worked and I AM IN LABOR!!! Holy crap! I guess I over exerted myself with all that exercise (yea..a couple hours of walking is exercise lately) whew!! Oh well, it was all worth it and I had a good time doing it. I have popped a few Tylenol and am ready for when Kelly calls and does say "it's time". No more mall walks though, that crap is for the birds!!

Team Joni has really kicked it into high gear...we have raised $1890.00 for The Leukemia and Lymphoma Society and I am tickled!! Thank you to everyone involved....I never imagined we would get this far...I am humbled!

http://pages.lightthenight.org/ocie/InlandEm10/Teamjoni

Last night's Grey's Anatomy had the best line ever and reminded me why our girlfriends are placed into our lives.....because they get us and know just what to say to "fix" us!! I am not going to set up the entire scenario..but it went a little like this... Meridith and Christina laying on the floor, Meridith tells Christina she should go back to McArmy..he busts in and makes this speech about how he ain't leaving and will stick with her (blah blah blah), Christina says lets go home and TAAA DAAAA.... Meridith tells him "I already fixed her before you came, but that was a nice speech" hahahaha I LOVE IT!! And this, my friends is why we all have our "person" :o)

xoxo - Joni