Transplant day!!!

Today it happened! I was "reborn" at 11:31 am - the official stop time of transfusion of the stem cells. They call it your "New Birthday" when you get a stem cell transplant so everyone has been telling me happy birthday today :o) Here is how it went down.....(this is going to be a picture pages entry - fair warning)

They came in at 10:45 with a big canister that had my stem cells in it

Each bag had to be taken out and verified by two nurses and the person from the stem cell department. The bags were each flattened into a metal case that was freezing so it looked like it was steaming.


Then each bag had to go into a water bath to be defrosted


Then they hung it up on the hanger, plugged me in and each bag took about 10 minutes to get in me!


Once it started going in I smelled the icky smell that I was warned about and cannot describe. I have heard it described as corn, vegetable soup, garlic and fish....so we will leave it up to Allison and Missy tonight to decide what they think I smell like! Evidently I am going to smell like this for a few days....eewwwww!!

My mom came in just as the last bag was hung and brought me a birthday card and two books to read! That was so special because she got to be there both times I was born :o) Then I felt bad because I slept for the next 3 hours and didn't get to really visit with her.

So that is the story of my stem cell transplant! Fairly uneventful, extremely important and now a part of my history!

Other news...
I cannot even begin to Thank the following people enough for what they have done - they have given the gift of life...and in one instance not even to me but did it anyhow!

My O+ posse, whose blood will be(or already is)flowing through my veins....
Lisa Kearley
Greg Neal
Michele Cash
Kristen Cowden
Ty Romero
Arvin Villanueva
Will Campos
Missy Mandala
and
Allison Waymire - Allison is not even my type but felt that it was important to donate to someone who needed it anyhow, how cool is that!

Thank you all soo much! I am going to pay it forward somehow, some way. I will never be able to give blood, but I will think of something to do for sure!


Light the Night
Team Joni is forming nicely!! We have a big goal this year and as soon as I am out of here I want to plan some fundraisers...bowl-a-thon, bake sale, rummage sale..whatever we can think of that will be fun for the team and make some money for this cause that is so close to my heart. I started the team a couple of weeks ago and we are already at $300.00....I know we can hit that 10K mark! It is going to happen, because "Team Joni" ROCKS!!!! Thank you everyone!!

To donate or join the team, here is the link:
http://pages.lightthenight.org/ocie/InlandEm11/Teamjoni

Email of the day:
My dad is in the hospital and has been since Tuesday going through his last Chemo treatment before radiation and I have been staying the night with him and days at work. I have a new appreciation for how hard it is for you to stay positive and keep up the fight but want to make sure you know that you are never far from my thoughts. Stay positive and keep up the great energy. I'm prayin for the best for you both

Quote of the day:
It's a beautiful day for such things! ♥

xoxo - Joni

Update...finally I have something to say!

Tomorrow I will have been in lock down for a week and it has its moments on different levels. Night time really sucks because they come in every three hours to check my vital signs, take my blood and/or give me meds. There is not a ton of sleep to be had here at hotel UCLA!! Here is the run down of what has happened over the last week......

Monday
I checked in about noon and it was official that I was a isolation patient in wing 6E at Ronald Reagan Medical Hospital. Mom and I unpacked my crap and sat here for a while. Eventually she took off to avoid the traffic (I had to make her - moms!!). They gave me my room service menu - Low bacteria diet - and I ordered lunch and then dinner...both were pretty good, but that is the last time I had a meal.

Tuesday
I started radiation, which I have never had before and was a little weird. So, for TBI (total body irradiation) they lay you on a table on your side in the corner of the room. Line you up with laser pointers to get everything in the right place and then you have to hold totally still while the machine zaps you from the other side of the room...didn't feel a thing! About an hour later, all I wanted to do was sleep and a really thick film started to form on my tongue and roof/walls of my mouth. This was from the protective meds they gave me and was most of the reason I have not been able to eat.

Wednesday
Same as above, BUT my hubby came to visit me and get my dirty laundry - LOL I felt really bad that day and decided to have a mini-breakdown for him - TADAAAA!!! Anyhow, I started to cry and say I don't want to do this and BAM - I threw up! Poor Bret...he just wanted to have a nice little visit and I go and throw up! He did great though, stayed calm, called the nurse for me and got me a wet wash cloth :o)

Thursday & Friday
Just radiation and I decided to order some soup for dinner...they delivered about 6 ounces of soup each time...luckily I wasn't that hungry and that damn film prevented me from eating anyhow!

Saturday
CHEMO day...I was dreading this because I know what high-dose chemo does to me and it is not good! Well, I did a LOT better than I thought. I did get a little dizzy during the chemo, but that was the worst of it. Bret and the boys came out to visit (and bring me my clean laundry). Bret and Daylon walked over and got us all frozen yogurt..we even got my nurse some! I was able to have it because my counts were okay so I was happy!!

And here we are Sunday morning. I just found out that I am going to get a blood transfusion, and what do you know - I already have some on reserve! A SPECIAL Thank you to Greg Neal and Lisa (Hunter) Kearley that donated blood last week - looks like you guys are the first blood to flow through my veins!! Anyone else that has some O+ that they want to give up - UCLA and I are ready to take it!! All you need to do is call (310)825-0888 ext. 2 and make an appointment. Give them my medical record number, which you can get from me by emailing me at bretnjoni2002@aol.com, and come on down and donate :o) I really really appreciate it!!!

I guess that is my update for now. I am doing well, I am at day -3 so in T-minus 3 days I get my new "birthday". My spirits are pretty high still and my Steelers are playing this afternoon - today is a good day!

Email of the day:
Joni ♥ i just wanted you to know how much of an inspiration you are to me! I am constantly praying for you and your family. You are such a fighter and you are making everyone so proud of your strength. I cannot imagine what you are going through but know that you are teaching us all what it looks like to be an inspiration, a mentor, a hero, and most of all someone who never gives up when most of us would lose patience. Your beauty and courage is something that I greatly admire about you and even in the toughest times you continue to shine. I continue to support you and pray every night for a fast and painless road to recovery. Good luck with everything coming your way starting tomorrow and know that you have so many supporters who love you and will help to keep you strong when you feel like you cannot do it alone. I love you so much & miss you joni ♥

Quote of the day:
Joni, I am thinking of you and hoping you are feeling better soon.

Have a great day everyone!!!

xoxo - Joni

Why YOU keep ME going.....

I just wanted to take a minute to share some of the emails and texts that I have received from YOU! This is part of the reason that I am so strong through all of this....I have soooo much support that I am completely humbled and eternally thankful. I am not going to put anyone's name next to the quote because I didn't ask anyone for permission...so if you would like to claim your words - PLEASE do so and show the world what you said to me that kept me going. Here we go....

Joni,
I just had to write and tell you about the dream I had this morning. I have been having a hard time lately, a friend of mine passed away not long ago and I have been pretty depressed. Reading your posts and seeing your strength has really made a difference for me.
This morning I dreamt that I was on a beach, waiting for a war to start. There were a lot of us there, just waiting. Then bombs starting coming out over the water, exploding in the buildings in front of us. I started running, like everyone else. I came to a doorway and yelled in, "They're shooting bombs! They're coming! What do we do? What do we do?!?" I was so scared in the dream. I remember it so clearly.
You came running to the doorway, looked me right in the eye and said, "J.....a, we've survived this long, don't worry, we'll make it." And then I woke up.
The dream reminded me that we have so much to be thankful for, that we have all survived adversity in one way or another and that the love for life itself is so important. So, thanks, Joni, for inspiring me in the real world, and giving me a slap of reality in my dreams!
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Hi Joni,
You are such an inspiration to all, we should be half the person you are. I just read something about team Joni, I am not good at the fb/links but would like to join your fight. Can you tell me what I need to do. And how do I buy a t-shirt. I love seeing you smiling face. Your wit just cracks me up. You take care and stay out of trouble. lol
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Hi Joni...

I just wanted to send you a message and let you know something you're already likely aware of! You're such an inspiration. H...n had let us know the cancer decided to return to your life and I decided to peek over here one day and saw your blog... your attitude is rock solid and awesome.

A group of us did some work the last few years with the Relay For Life (with AMS) and this year I put a luminary out for you. Just wanted to tell you that and send you some love. Weird from (guess who) ? maybe but I dont care LOL ;)
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I seriously ♥ your blog! It helps me even all these years later. I have always kept such a positive attitude...when I got sick I was just married not even 1 year yet and we were just starting out our lives. I continued to work as much as I could and keep a somewhat "normal" life. I finally was able to get pregnant and I have one sweet & happy 4 yr old boy. As I'm approaching our 10 yr wedding anniversary all these what if's are coming up for me. It's so strange because I've never been like that. But I'm wondering if we didn't get such a late start on children (5 yrs into our marriage because of the cancer) maybe I would have had more children. now I feel too old :( I'm just feeling like darn cancer robbed so much from me. At the same time I volunteer for the American Cancer society almost full time for the Relay for Life in our community...I LOVE what I do and honestly if I didn't have cancer I can't say I would be doing what I do today.

UCLA is where I went for treatment..Dr. Gary Schiller was my Dr...he's tough but the best there! I plan to keep reading your blog and keeping up with your happenings. You are so strong and you have such an amazing outlook!
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Those were just a few of the emails that I have received. From now on, I am going to end every blog with a text or email from someone that inspires me...one of YOU! I don't know if you all realize how much of an impact you have on me. there have been times when I felt like absolute shit and then I get a text, email or FB comment and I smile...it lites up my day. This blog is dedicated to all of YOU that inspire ME to keep up this fight!

YOU make me feel like this....


When I really feel like this...

And for that I thank you all for your love, prayers, support, toasts and just thinking of me.

Today is the first day of the rest of my life. I am now at UCLA Tiverton house until Monday when I check into Ronald Reagan Medical Center for a grueling week of radiation and chemotherapy in preparation for my transplant. One day soon, this is all going to be a memory and I think it is going to be a good one. THIS is what makes me, me and for that I am thankful. Thank you all for being you and standing behind me - I love you!

xoxo ~ Joni

Quote of the day:
"Girl u got some guts, bret and I are very proud of u!!"

Quick update

Tuesday's harvesting was a success!! I ended up with a total of 3.31 million stem cells when I only needed 2 million. They will use all of the collection which means that there is a good chance that my transplant process will go quicker because there are more cells to graft onto my bones...YAY!!!

Today we go for a dressing change and flushing of my port and then meet with the radiologist. After that, we get to go home! Six nights in my own bed with my hubby and pooch....I can't wait!

That's it for now :o)

xoxo - Joni

Harvesting

Tuesday morning I went in and had another port put in, this one is for the harvesting and the transplant. They told me that they were putting me in sedation, rather than general anesthesia so I may feel pulling and hear people talking. Well, they took me into the room, I moved from the gurney to the bed, they put the oxygen mask on my face and I woke up to move again. I asked them what they put in my O2 and they laughed and said nothing but oxygen...I called them liars! Hahaha From recovery, they took me to the pheresis department and I started my harvesting. They need to collect 2 million stem cells and I found out this morning that I produced 1.86 million on my first shot!! So, we did more harvesting today and are sure that we got it all, so I am done with that step. YAY!!

Those dark tubes have my blood in them going through the machine and keeping the stem cells, then pumping the rest back in me.


Cheese!


The final result - that bag is full of the stem cells that are going to make me better! Amazing that they come out of me first, just to save me in the end! Weird.


Now, we are back at the hotel waiting for the confirmation call that I don't have to go back tomorrow. The only problem is that I have an appointment with the radiologist on Friday so I am stuck here until then - unless I can convince them to see me next week when I see the doctor. If I can do that, then I'm outta here for a whole week before moving back for six.

Light the Night news:
I have signed Team Joni up for the Light the Night walk on October 22, 2010. Last year we made $4317.00 in only six weeks - can you imagine what we can do in 10 months! I am setting the team goal at 10K and I know we can do it!

Here is the link for anyone that wants to donate or join Team Joni and walk with us this year:

http://pages.lightthenight.org/ocie/InlandEm11/TeamJoni

This year we will have more time to do fundraisers and I already have a few in mind :o)

Gotta get ready for a fire drill at the hotel - UGH!!

xoxo - Joni

I'm an "A" Patient!!

This morning started out great...I slept all the way until 6:30! This rarely happens, as I am usually wide awake at 5:00, so this was a treat! I was not sure what time my blood draw appointment was suppose to be, so we decided to get there at 8:00. I figured we would have to wait for the shuttle to get us, so we went to the lobby at 7:30...Low and behold, the shuttle pulled up right as we walked out there!! Score #2 for the morning! Got to the hospital and found out that my appointment was at 10:15, but they took me back early...score #3! It was at this point that I hit a little hiccup in the process.

So, the nurse took me back to draw the blood and asked me if I have a port, I said yes and showed it to her. Personally, I think that if they just have to draw blood then they should do it through my arm...and here is why.... They have to still stick me through the skin with a needle that goes into the port, and it hurts because they have to kinda push hard to get it in there. At my regular oncologist office, they will numb it for you first...not here - they just jam it right in there. Then they have to pull it out, which hurts equally as bad.

Anyhow, she accessed the port and NOTHING! Normally, they flush it and then suck back a little blood to make sure I have "good blood return" but nope, not this time! She had me raise my arm, cough, lay down, turn on my side and bend forward. she flushed it three times, tried to use heparin and nothing was doing the trick. She said that I could have a shot of medication the would take up to an hour to work...so I said "Can't we just use my arm?" Finally, she agreed, pulled the needle out and sent me to someone else to draw the blood....which worked like a charm, the FIRST time....hahahaha All of this with the port worried me a bit, thinking that this is the start of my body not cooperating - soon I learned different :o)

The reason for the blood draw was to make sure that the chemo and neupogen shots are working. They needed to make sure that there are enough stem cells in my blood stream to start harvesting tomorrow and they also needed to make sure my white cell count was good. I got the call about an hour ago and I am a ROCKSTAR!!!! Not only do I have enough stem cells in my blood - I have produced OVER DOUBLE the number that they wanted to see!!! And my white cell counts are SUPER HIGH at 19!!! Score #4 for the day...woo hoo!

Now that we know I am ready, I have to be at the hospital tomorrow morning for surgery. They are putting in the double line port and this time they are knocking me out! YAY...last time was kinda creepy being awake. From there the pheresis nurses will come get me to go start harvesting. Lastly, I meet with the radiologist that will give me the radiation starting on the 18th. I will know Wednesday morning how much I harvested and whether I need to do it again Wednesday, Thursday and Friday. Lets hope we get it all in one shot and I can go home Wednesday for a whole week....Keep those fingers crossed. So far with the double production, it sounds promising but I am not holding my breath.

That's it for now, I just wanted to share the good news with everyone!

p.s. Polly, I have been wearing my angel every day since I got here - she must be working!

xoxo - Joni

This is what happens when I get bored...Celeb grave hunting...Huh?

On this fourth day of my stay at the UCLA Tiverton House, I decided that we needed to get out of here and do something, anything!! So, I got online and Googled "Things to do in Westwood village" and how I ended up finding Westwood Memorial Park is completely beyond me! BUT, I was intrigued so I went with it. I found that just a couple of blocks from our hotel is a cemetery that is the final resting place for famous people such as Marilyn Monroe, Natalie Wood and Don Knotts. We decided to go and check it out.

First we got derailed a little because I found out that my Steelers were on TV so I had to watch the game. Got all the way to halftime and since the Steelers were chewing up the Browns and spitting them all over the field, CBS made the executive decision to switch the game on me! Not only did they switch it, they switched it to the Raider's - Kansas City Game....now who wants to watch that?? Not me, thats for sure! I have a lot of friends that are Raiders fans, and I love my peeps...BUT I know if CBS did that to Raiders fans, they would be down at the CBS studios burning down the building...I'm just sayin! Hehehehe All in good fun, I did get to watch most of the slaughter, so I was good.

Back to the celeb grave hunting. After I had my little fit about the game, we showered and got ready to go - just in time for it to start raining!! Really...COME ON NOW!!!! Well, I wasn't going to let a little rain stop me! I put on my coat and we were outta here - we needed that fresh air! Now, when they tell you that you will miss this place unless you know exactly where to go...they are not kidding - we drove right past it! Flipped around and I punched it into my navigation, which said "your destination and location are too close" because we were right in front of the damn place! This cemetery is tucked in between skyscrapers - it is the strangest damn thing! Once you are inside, there is one loop to drive and that's it. It is a very small, intimate place that I am sure is lovely to visit when it is not pouring rain on your head...haha Here are some of the pictures that I took on our little trip...

Rodney Dangerfield...his stone says "There goes the neighborhood" LOL


Natalie Wood - did you know that she could not swim, was afraid of water and yet it is said that she drowned after falling off of her yacht trying to get into a dinghy in the middle of the night....sounds like foul play to me!!


Marilyn Monroe - Hers can be spotted very easily because the stone is discolored due to people kissing and touching it over the years - you can see kisses on the photo


Farrah Fawcett - My mom and I both just said Awwww :o(


Merv Griffin - stone says "I will not be right back after this message" hahaha


Heather O'Rourke - Now this one freaks me out a little. I don't think that I would put "Carol Anne Poltergeist I. II. III." on my 13 year old daughters grave stone. I mean, we all know that she was Carol Anne...couldn't they have just put "They're Heeeeeerrrreee"....although I am not sure how appropriate that is either!


Walter Matthau and Jack Lemmon...The Odd Couple and Grumpy Old Men



Among the others that we saw were Eva Gabore, Dean Martin, Capote, Don Knotts, Carrol O'Connor and someone named Mickey. This Mickey has us totally stumped! He/she is right between Farrah Faucett and Walter Matthau and the stone just says MICKEY with a date that I cannot read in my pics. I have no freaking clue who Mickey is...but we are determined to find out! It appears that I am going back tomorrow with my friend Kris to show her, and see the ones we missed like Ray Bradbury, Bettie Page, Sidney Sheldon, Janet Leigh, Karen Carpenter and Dominique Dunne (the other sister in Poltergeist, I wonder what her parents put on there!)

That's it for my daily adventure....tomorrow we do blood work and the party starts with harvesting on Tuesday!!

Later kids!

xoxo - Joni