News Flash!

So, last week I did all of my testing required for UCLA and everything went pretty well. I know I have a heart because I saw it on the screen and I heard it beat. Evidently I have a lot of blood because they took a crap load out of me and I was still able to get up and walk out. I can hyperventilate on cue with a snorkle apparatus in my mouth..and only see a couple of stars. AND I think I passed the psych evaluation...LOL We will see about that one!

Yesterday I got the confirmation call that I had an appointment today with the doctor...and then I got another call like 30 minutes later from their office. They were calling to ask me if I am having any bruising or bleeding, such as nosebleeds or blood in the urine. I told her no and asked why and she said that my platelet count was only 20K (normal range is 120K to 140K) and that if anything happens I need to call the on call nurse line and they will help me. Ummm, yea this TOTALLY freaked me out (although on facebook I said I was a little concerned) and I had a hard time sleeping last night, just waiting for my nose to explode or something! LOL Well...it didn't and I lived to get to the doctor this morning! Soooooo I get to the doctor and he asked me how I was doing, I said "fine, but evidently my platelets are not cooperating" he said "oh that was last weeks counts" and I told him that I also did blood work yesterday so he had them pull the results...and my platelets were at 104K....no need to worry! BUT this means that last week they were shitty and my nose could have exploded then!! But, it didn't and I am a-okay!

So, here is the not so happy news... He told me that while we wait for the approvals from the insurance company, Dr. DeVos (UCLA) may want me to go ahead with a fourth round of chemo. Pfffffttt!!! That did NOT make me happy at all, although I understand why. It can take a while to get the approvals back and they don't want anything growing back in the interum. I guess they don't care that I want MY HAIR TO GROW BACK!!! My poor head is always cold and my eyelashes and eyebrows are barely hanging on! I talk to them everyday and tell them just to hang on a little while longer and the rest of their friends will grow back soon...so far it is working but if I shoot them up with another round of this poison, I think they are going to jump ship on me! Bret told me tonight that he will color them in for me and all I could imagine was that one email about not giving chola's sharpie markers!!! EEEEEKKKK!! Yea - that is not going to happen!!




Anyhow, I should know by tomorrow if I have to do the fourth round...cross your fingers that I don't..because I may have to write a really pissy blog if that happens!

In other news, I got to babysit Tanner yesterday while mama Kelly got her hair did! Must be nice to have hair to get did - LMAO!!! He was a good boy and slept on my chest almost the whole time. I have never babysat a baby so little so it was as new for me as it was for him, I sure am glad he cooperated! Although after I changed, fed and burped him he got a little testy so I picked him up right on time for him to spit up down my tank top, between my boobs, all the way to my tummy...hahaha Great shot kid! He is such a cute little thing and I love his face! Kelly and I are going to take pictures of me and him while we are both still bald...hahaha This is what happens to two women that stay home with nothing to do!




That will do it for now...if I repeated anything from the last blog, oh well - I have chemo brain and if I have to deal with it, so do you!! :o) hehehehe

xoxo - Joni

Too much and not enough

Almost all of my testing is now done in preparation for the bone marrow transplant, the last test is tomorrow - a pulmonary function test. My friend Chad, who is also going thru this at the same time, said it is going to be an hour of blow, blow, blow followed by faster, faster, faster....OMG!! hahaha Sorry, that one just gave me the giggles. Anyhow....once that is done the insurance has to approve the transplant and then I get the new port and off we go.

I spoke with UCLA and found out some information that didn't make me all that happy, but it is part of the process and I am going to push forward with it (as if I have a choice)! First, they let me know that I have to be on call for 2-5 days during the harvesting process. I am assuming that this does NOT mean I can hang out at home (which is 88 miles one way from the hospital) and wait for them to call me in. So...during that time I am going to have to stay close to LA...okay, not a huge deal, we can take the trailer down to the beach and stay there for a few days. Then...they tell me that there are two requirements for me to be discharged (after being in the hospital for no less than 3 weeks) 1. I have to stay close to the hospital for 2-4 weeks, just in case so I can get there fast. 2. I have to have someone as a caregiver during that time 24/7 - again just in case. THEN she tells me that they recommend this UCLA Tiverton hotel joint and says that is it about $120 per night, and says is that going to be okay? Ummmmm HELL NO! Who has that kind of money?? Not us, that's for sure! I don't know if the doctor will be too fond of us staying in the trailer at that time so I need to find other lodging. So, I have been spending tons of time online printing forms from organizations that help with this type of stuff. My doctor is going to have fun verifying and signing 500 applications that I am going to bring to him - LOL

I have also been online entering all kinds of giveaways! LOL If things go right, I am gonna have a 2011 Buick from Ellen, some UGG boots from Extra, a Target gift card from Rachael Ray and all kinds of other goodies....LOL I have also been entering the second chance drawings from non-winning scratchers...come on Ca Lottery!!! I can't even believe that this is my life right now....I miss school and work! BUT, I will surely be a happy girl if I win ;o) Hehehehe

I guess that's it for now...I'll let you all know if I come up with anything else to tell you! :o)

xoxo - Joni

The Getty and Hollywood....

Well, I was determined to cram some culture into the heads of the boys this weekend and well....that backfired! We decided to go to The Getty and were going to go to the La Brea Tar Pits. We made it to The Getty and only stayed for about an hour. I enjoyed looking at some of the artwork, but all I kept hearing is "I'm bored" and "I'm hungry" and Bret was not all too impressed with the art himself, so we left. We drove through Bel Aire and Beverly Hills on the way to LA and Hollywood. I think it is funny that people pay to go on those chopped up vans to see the fronts of celebrity homes. Like do they really think that "The Fresh Prince" is going to be in front of the house doing yardwork? hahahaha







I learned that next time I want to go to the museums, I will not go with the boys so I can actually enjoy the art :o) A couple of funny things about The Getty - Landon reading the sign outloud that said "do not touch the sculptures" while he was sticking his finger in the belly button of one, and being asked (numerous times) "why are the babies in the pictures all fat and why do they all show their wieners"....how am I suppose to answer that?? hahaha Overall it was a good day with the family...even if the boys were bored to death!



We drove by High Voltage Tattoo..better known as LA Ink and was unimpressed to say the least. Just a little store front on the corner of LaBrea and Fountain in the heart of the ghetto..nothing too spectacular. Not that I expected it to be anything on a grand scale, but TV definitely makes it look like more than it really is. Of course, I DID take a few pics...hahaha




Next stop...Hollywood Blvd! There is nothing too much to say about this other than tourists + freaks = great people watching. The tourists are probably more fun to watch than the freak shows that are going on all around you! People REALLY want their photo takes with Spongebob, Superman and Barney...LOL

Last stop..Griffith park...and for one reason, Bret and I both had to pee! LOL


Medical news:
Got the call from UCLA on Friday and the ball has started rolling. They said that they will be sending me a bunch of information in the mail and ordering tests to get started. I have to do an EKG, a breathing test and a bunch of blood work. They are going to have a nurse teach me how to give myself shots since I will have to do them myself to flush my stem cells into my bloodstream. They also said I need a psych evaluation - I am assuming to make sure I can handle this....perhaps I should just give them my blog address and have them decide from there! HA, like I couldn't handle this - pfffttt!! These people are no joke either...I got off the phone with them and within an hour I had the cardio place calling me to set up the EKG..so tomorrow morning we will get that out of the way.

Thats about it for now!

xoxo - Joni

Sometimes it's rotton apples!

Lots of people lately tell me that I am an inspiration and that they admire my strength...The way I see it is that the fact that anyone thinks I am strong or that I inspire them is amazing to me! I have always just been me, not too much of a stand out, not jumping off of the page at anyone, just a regular girl doing regular things....or at least I thought they were regular. The reason I mention this is because I want to say THANK YOU to all of you that have supported me and continue to support me. Does it sound funny for me to say that you inspire me to inspire you?? LOL

I have a lot of inner strength, but I have realized that without all of the encouragement, love and prayers I wouldn't have gotten this far without cracking up! Well...those of you that read this blog already know I am a little cracked to begin with, but still!! haha I may have said this before (no, I am not going to go back and read all of my entries to find it) but when all of this is said and done, I want to pay it forward...I want to do something for someone else in my position - or anyone that is sick - and make an impact on their life, like all of you have on me. With that said, I am open to suggestions on how I can accomplish this, and I would love to have help with it. Maybe I could speak at a seminar or something - LOL HEY - I did get an A+ and student of the year in my speech class a couple of years ago....we all know I can talk (and sometimes not shut up). Let me know what you come up with and who wants to help on my mission.

I will still continue to support The Leukemia and Lymphoma Society and raise money for Light the Night next year. Team Joni rocked it this year and I know we can do it again next year. My pay it forward mission is something that I want to do above and beyond that :o)

Now, to the good, the bad and the ugly for the week. Remember that PET Scan from October 27th??? Well (for those of you not on Facebook) the results came back and they were....get ready....wait for it....here it comes....NEGATIVE!!!!! There is no sign of cancer from my eyes to my thighs!! After just two chemotherapy treatments with ICE (some nasty shit) I am clear of cancer! My blood work was equally impressive with the exception of slight anemia and slightly low RBC's...but nothing to be concerned about. That is the good :o)

The bad is that I still had to do a third round of chemo. I guess my two doctors (my oncologist and my UCLA oncologist) agreed to go ahead and do it - for good measure(???) I guess it is not really that bad since all they are doing is taking good care of me...but I would soon curse them both!

And then there is the ugly...and boy was it ugly! I went in Tuesday full of piss and vinegar, ready to face my last chemo like a champ. Business as usual, right?? Yea well no one told me that round three was to be my knockout round! After chemo I went to see Kelly and Tanner and we went to Olive Garden...standard operating procedure - get first day of chemo and pig out with Kelly! This time was different, I think I ate too much and by the time I got home I was going downhill. Wednesday came and I put on my happy face, but was not on my game. Came home and went straight to bed. Thursday came and I was not feeling good at all, got my chemo and went home - straight to bed. Friday I had to go get my shot (the white count booster). I woke up with burning when I peed (I know, I know TMI),I didn't want to get out of bed, I forgot to take my cocktail of pills that help my bone pain and I wanted to hunt down two oncologists and poke them in the eyeballs! I got my shot and tested for a urinary infection (which was negative, I just needed more fluids) and went home...and, you guessed it - straight to bed! My poor mom drove from Menifee to Yucaipa to get me, took me to Rancho for the shot, drove me back to Yucaipa and then went home - all with me being in a crappy mood...Thank you mom!!

Anyhow, I did not get out of bed until Sunday when I pushed myself a little too hard to go to Daylon's last game and team party - how could I not go, they came in first place, undefeated for the season and I am proud - even though I cried getting out of the car because I felt like shit! Nothing is going to stop me from being there for my boys...even if they don't realize what it took to get me there - they know I am there :o) I came home and went straight to bed and now I am here writing my blog on Monday morning - Yes, I even felt too bad to type!

So, there you have it...although I may be positive, strong, happy and a fighter 95% of the time...sometimes I get the beat down and it takes me a little longer to get back up. I turn weak, sad and have no fight in me for a little while. This last chemo proved that I am actually human and sometimes I need to just sit down and realize that it is okay to feel like crap...because this too shall pass!


As for what is in store in the near future, I should be getting a dual line port put in soon in order to harvest my stem cells, a tour of the UCLA facility and a timeline or "schedule of events". Bring on the transplant, I am ready to rock and roll!! If anything, I need this to be over with so I can grow some damn hair back...this bald crap sucks - my head is always cold!! Grrrrrrr

Today's plans - I think I will get some laundry done and get out of this bedroom. We will see how it goes once I actually get out of bed :o)

xoxo - Joni

Bolsa Chica, pooches and PET scans

It has been a while since I updated this here bloggy, so I thought I would let you all know what I/we have been up to. WOW, I didn't realize how much has happened since the last post. So here we go kids....

October 25th, I went down to my moms house and hung out with her and my Nana and Grandpa. I don't get to see them too much, so it was a nice afternoon visiting with them. I love seeing them and miss them a lot.

October 27th Bret, Elliott (the pooch) and I decided to go down to Bolsa Chica and camp for a couple of nights. Since I was going to have chemo the next week, we thought this would be a nice little get away before I got poisoned! We had a little hitch in our giddy-up, as I got a call to get a PET scan the day before and had to do it that morning before we left (we will get back to that later). Once we were off, it was a nice drive and we got to the beach at around 3:00. The beach was absolutely beautiful at about 80 degrees...it had rained for 2 days prior - I picked the best two days of the week (pats herself on the back).

A few things to mention if you plan on camping at Bolsa Chica...You can NOT take your little dog on the sand, therefore if you want to go to the water, only one of the two of you can go (provided there are only two of you). There are two exceptions to this rule, however....#1 There is a dog beach - which is one friggin mile down the road...ummm NO! #2, you wait until it is dark, you have had plenty of Coors Lights, you pick up the dog, stuff him in your coat and run for the water. Can you guess which option we went for :o) There is also a wetlands area across the street that is suppose to be a pretty nice little walk, BUT again you cannot take your dog...and option #2 was not available since it is closed at night. Lastly, there is a little patch of sand/bushes/flowers at the end of each campsite where your little pooch can go do his business...well what does mine do?? Gets stung by a damn bee!! We got the stinger out, but he was not happy for about 3 days after. The moral of this little story is leave the dog home!

Another little thing to mention...if you are planning on visiting someone that is camping, don't park at Jack in the Box parking lot and walk to the RV place to save yourself the 15 bucks! No matter how close it looks on the map..it is at least 2 miles away!! My lifelong friend, Angie and her daughter Sienna found that out on Thursday morning and ended up needing a lift back to their car...lol Sorry Ang, had to throw that one in there :o)

Night 2... Our friend Dan came out in his buggy to hang out with us and spend the night. Dan and Bret flew Dan's kite, we made dinner and hung out until dark when we decided to go out to the sand and build a fire. So, we packed up the Silver Bullets and put the pooch in the coat and headed out into the darkness. I discovered that my I heart Radio on my crackberry is awesome and we had a good time hanging out by the fire with the dog running loose....DOH! hehehe

Here are some pictures from our beach trip....











Okay, since this entry ended up being tooooooo long (as I tend to ramble) I will talk about the PET scan results and my most recent EVIL chemotherapy in the next entry. Hope you all enjoyed the pictures :o)

xoxo - Joni