Friday, December 31, 2010

Tiverton house...day 1

We arrived at the UCLA Tiverton House hotel yesterday and it is not too bad. They have a library, computer room, fitness room, game room, laundry, kitchen, recreation room and free breakfast. The hotel is located about a block from Westwood Village and if it was not so freaking cold outside, would be a nice walk over there. Bret and the boys stayed for dinner - sandwiches from Ralph's lol - and left at about 7:45. I cried for about 15 minutes after they left, both boys sent me a text saying they love me :o) and I hunkered down for the night. I cleaned the room to my liking, arranged the food the I brought on a platter, stocked the fridge....5 minutes later I decided to see what was on the TV.

As I was laying here watching TV I saw this infomercial for Stem Cell Therapy cream. They show you this little cartoon thing that shows the stem cells in your blood stream and how they go to the surface of your skin and fill in wrinkles. Of course they let you know that this is a natural process and as you get older the stem cells are fewer in supply and that is why you need their cream - because it works on a cellular level. I call bullshit...BUT this got me thinking. So, if this is the case and your stem cells really do help for wrinkles then since I am going through this "flushing" process right now to flush them out of my bones and into my blood for harvesting...hell by next week I shouldn't have a wrinkle in site!!! HAHAHAHA magnificent, I will let you know how it turns out ;o) and if it works...my mom said she is going to have me pee in bottles and she is going to sell it. Now, I would think you would want my blood and not my pee...but it is her business venture, not mine...and if she can sell my pee, more power to her! LMAO!!

Mom got here this morning with Michael and Jim, who stayed about 10 minutes. Michael and I ran over to Ralph's for him to get a pack of cigarettes...$7.19 a pack!! HOLY COW!! Who can afford that habit, not me that's for sure! Anyhow, then mom and I were left on our own...so we sat here and stared at each other for a few minutes. I bitched about not wanting to be here and with that we decided to venture out for food. We ended up at Juniors in Westwood...they bring you pickles to the table when you sit down!!! PICKLES, I thought I died and went to heaven! I loooove pickles (I read later on Yelp that they are never-endig pickles too). We had a pretty good lunch and came back to our home for the next week. Now we are both sitting on our beds on our laptops...LOL

I hope everyone has a very happy and safe new year!!! 2011 is going to be the best ever, and I for one am ready to put 2010 in the past and never look back!

That's it for now...adios amigos!

xoxo - Joni

Thursday, December 30, 2010

The real journey begins

First, I would like to take just a second to say that if you do not like me for any reason....do us both a favor and hit that little red "x" in the right hand corner, as you are officially uninvited to read my blog. That's all I have to say about that! :o)

And the journey begins.....
It has been a little while since I posted anything on here so it looks like I have some back tracking to do. Honestly, after the chemo that I received at UCLA, I felt like shit so I wasn't typing anything! I was under the complete wrong impression that having only one type of chemo was going to be easy...after all I did pretty good with the I.C.E. regimen, right...UGH!!! Boy was I mistaken! I actually started to feel dizzy as they were giving the chemo to me, and that has never happened before. Then I had to wait 2 hours to see the doctor - and that was a treat! And to make matters worse, it took us 4 hours to get home that night! By the time we hit the parking lot of traffic in Redlands, I was in tears (I think Bret was too). Anyhow, we made it home and I went straight to bed...for 4 days! I missed Christmas all together. Well, I vaguely remember coming out of my room to say hello to everyone that was here but that's just about it. I was able to get up and have my best day on Monday (which was also Bret's birthday) only to feel like crap again Tuesday and Wednesday....so here I am , feeling pretty good and ready to conquer the world once again!

For those of you that are currently going through treatments, getting ready to go through treatments or just drawing inspiration from my blog (which I think it is amazing that I can inspire anyone) PLEASE DO NOT get discouraged or set back by what I just said...there is a reason for it. The reason that I felt so horrible was because I was given an extremely high dose of chemotherapy that is suppose to flush my stem cells out into my blood stream for collection. I am also giving myself two shots a day to boost my counts and help in the "flushing" process...and I am certain that those are also making me feel yucky (it could also be that my new ritual is to eat sour cream and cheddar chips with a diet Dr. pepper while giving said shots...who knows haha). So, this is not a typical dose of chemotherapy and it has never been this bad...nor will it be again :o) So, keep up the good fight, stay positive for your loved ones and remain inspired!!!

Okay, so I leave today at about 1:00 to stay at the UCLA Tiverton House..the hotel that is on campus so I am close to the doctor. They are concerned that my counts will bottom out and if I get a fever or anything, I am right by the doctor and they will admit me to the hospital immediately....can you imagine if I had to go from Yucaipa to the hospital with a fever, I would get dead on the way!!! So, as a precaution I am off to the City of Angels for a while. My "stuff" starts next Monday with blood work to make sure the stem cells are doing what they are suppose to (getting out of my bones and into my blood) and then Tuesday starts the harvesting process. I can probably come home Friday but I have to be back on the 13th for a visit with the doctor...I will be back at the hotel for a few days before being admitted into the hospital to start the radiation, chemo, transplant and recovery mission. I have to go back a few days early because I have to have a drug called Kepivance administered via IV by a nurse. This drug will help with the mouth and gastrointestinal sores that I will probably get from all the radiation....oh joy!

So, this weekend is just going to be me and my mama playing endless scrabble and cards...lol Hanging out and doing a whole lot of nothing for no real reason other that to keep me close to the hospital (if you ask me, my counts dropped on Tuesday and are now starting the uphill climb - that is solely based on how I feel today and I have gotten to know my body pretty damn well lately). I will have the computer with me and will update the blog and Facebook as much as possible, even if it is just a little blurb on my progress. It feels good to let it all out and I know a lot of people read this to check up on me.

One more thing....Happy Anniversary Bret!!! I love you! (Today is our 7th wedding anniversary!!!)

I think that's it for now, unless I forgot something - which lately I forget a LOT of somethings, in which case, I will pop back on here and tell you something amazing later (okay, maybe something stupid....but you get what you get with me!)

Later gators!!

xoxo - Joni

Thursday, December 16, 2010

Just started thinking..........

For some reason I opened the cupboard in the kitchen to put something away and thought "wow, it is going to be a while before I complain about this again" lol But really I got to thinking about the things that I do, that I will not do......albeit trivial, for a long time. Almost every morning I make coffee, twice a week I wake kids and get them going, every other weekend I wait for kids to wake, I do dishes, I vacuum, I dust, I sweep, I play fetch with Elliott, I pet Sandie on her snout and give her treats, I randomly drive to Kelly's house to hang with her and Tanner, I pick Allison's kids up from school, I make Christmas suckers, I do laundry....etc, etc. I just realized that all of this is going to come to a screeching HALT (for a while) very soon! I am about to do something that not a lot of people do - I am getting a bone marrow transplant! Now, that part is not a big deal to me...the stuff that I will NOT do for 2 months is. I will miss my morning treats with my Sandie girl and Elliott, I will miss making coffee for Bret, I will miss....well laundry! I am going to be sitting in a room that is isolated from the world and the only person I have to deal with is me...and I am not all that interesting! I guess the reality of it all is beginning to hit me.....don't get me wrong, I am ready for it...but am I ready for it? hmmmmmm I think I am just tripping out about the fact that my "normal" trivial things are not going to be there for a long time.

Something else that is getting to me is that I read all about my hospital stay and what to expect....it is expected that I will be depressed and need counseling. That is unlike me and I am hoping it doesn't happen...although I will definitely talk to someone if need be.

Funny stuff...

The other day I took Elliott to the groomer and then ran to get gas and send my package to Afghanistan. Anyhow, I came home, opened the door and..........nothing! I thought "OMG where is Elliott??" I checked the back door to be sure it was shut, then thought he must have snuck out when I walked out the front door. And THEN reality slapped me upside the head...DUH dumbass...you left him at the groomer!! REALLY - this chemo brain crap is really getting old. I am not joking either...this really happened!!

Other stuff...

This, to me, does not sound right because I never ask anyone for anything...ever!! But people have been asking me what they can get me for my hospital stay, so here is what I have come up with....I think

Pajama bottoms - size large (juniors, medium in womens)
Henley-style shirts with buttons (large)
Burts Bees cuticle stuff
Chapstick
Socks
Slippers
Hard candies (lemon heads are super)
Zip up sweat shirts (large)
Crosswords & word searches
Books
Your love and visits to the hospital :o)

About the visits to the hospital...I can have visitors 24-7 as long as you are not sick or have not been exposed to sickies! All you need to do is come to my room and wash your hands for 15 seconds in antibacterial soap :o) I really really want visitors too ,god forbid I go crazy all alone and have to write even nuttier blogs!!! LMAO

Light the Night!!!
Today I got a Christmas card from Light the Night telling me that next years walk is on October 22nd...Team Joni plans on raising 10K and will be fundraising ASAP!! We also got a junk mail looking flyer in the mail from Light the Night...Me, being an awful person didn't even look at it (I was busy looking at Christmas cards). Landon and Bret opened it and we saw that it was a mini "yearbook" of the Light the Night walk...jokingly Landon said "there we are" hahaha Then we opened it up and on page 2, sure enough was Team Joni!!!! OMG!!!! I said "No, THERE we are!!!" I was so excited!! Team Joni is famous! So, you know we can definitely raise 10K in 10 months if we raised $4200 in 6 weeks!!

So, that's my story for the second time today. I want my kids to know that I don't make them do dishes and vacuum to torture them...and I will miss telling them to do so. I want Bret to know that I will miss getting the coffee going in the morning, and nagging him to stop snoring at night. I want my dogs to know that I will give them ample amount of treats everyday when I get home. I want my mom to know that I will miss her never ending phone calls to see if I'm okay....becaue I love to hear her voice. I want Kelly and Tanner to know that I will miss our weekly visits. And I want you all to know that I WILL BE BACK so don't get use to it!!!

Again, I am sure this is not all I have to say so stay tuned for more as I think of it!!! :o)

xoxo - Joni

Approved!! Holy Crap!

I got the call 2 days ago that my stem cell (or bone marrow) transplant has been approved! The call was kind of funny..."congratulations, yay i'm so happy"...blah blah blah. I hung up and reality smacked me in the forehead - this is REALLY going to happen - holy shit!!! I decided to have a semi-breakdown and figured that Coors Light was the answer...it wasn't, but it did make me feel better - along with wrapping presents, talking to Bret and my mom and texting Kelly and Allison....lol

So, as of right now, here is the unconfirmed schedule (they are suppose to call me today and let me know if the appointment dates are for sure)....

Next week sometime I have to go to UCLA and meet with the doctor and the transplant coordinator to sign a bunch of consent forms and go over the plan of action.

December 23rd I get chemo to mobilize the stem cells. They are only going to give me one type of chemo - cytoxin....so that shouldn't be too bad (I hope).

December 24th I learn how to and start giving myself shots of neulasta...which is a white count booster. I believe I have to do these every day (will know more next week)

January 4th I will get the dual line port, since the veins in my arms are shot because of the chemo 18 years ago. I don't know why they can't use the big ole one in my forehead that bulges out...it would be perfect!! haha I also will start the harvesting process on this day. Hopefully I produce good and this is a quick process.

From there we see how many days it takes me to produce enough cells to use for transplant. Once that is said and done, I will be admitted into the hospital to get the real party started! Here is how that is going to go down....

They start the days as a negative number...so we begin with day -8

-8 TBI - Total body irradiation, twice a day
-7 TBI again
-6 TBI yet again
-5 TBI...this will be the last one
-4 Chemo - Etoposide over 4 hours
-3 Rest
-2 chemo - Cytoxin along with MESNA (a drug to protect my kidneys and bladder)
-1 Rest
0 Transplant!!! This is called "day zero" or my new "birthday"
Then we start with the positive numbers...all days of rest. Around day 10, my blood counts should start to come up and day 12 will be discharge (provided that the counts are okay). So....if you count all those days, it is a minimum of 21 days in the hospital!!

Once I am discharged, I have to stay close to the hospital in case anything happens. This could be anywhere from 2-4 weeks, depending on how well I am doing.

Now that you have seen the schedule of events, you can see why I am saying Holy Shit!!! hahahaha! I am sure that the time is going to just fly by and before I know it I will be back at work and school and this will all just be a distant memory of something that made me the person that I am.....the worlds strongest fighter!

On a funny note...
Last night Bret and I went to the grocery store and he grabbed the wrong can of sauce, since we were at the checkout already I told him I would take it back and get the right one. He showed me the can he wanted and my chemo brain did not register it at all...I went to the aisle and grabbed a completely different one! haha I got back and he said "that's the wrong one" I said "that damn chemo brain, I can't even remember from here to there" for some reason this totally gave us both the giggles and then I asked Bret "and who are you again" and now the checker was laughing too...hahahah good times!!! I swear I have completely lost my head lately, like I am totally stuck on stupid!!! Um, yea I am sooo ready to get ME back!

I think that just about covers it for now...although I don't remember half the stuff I want to say, so there may be more in a few hours!! LOL

xoxo - Joni

Friday, December 3, 2010

The clock is ticking...can you hear it?

Talked to my transplant coordinator yesterday to see what is going on with me and here is what I got... They are still waiting for one more test result from my doctor, which I know they have because he told me it was good last Tuesday!! So they sent over another fax asking for all of the information to submit to my insurance and she is going to mark it Urgent for approval. This means that the clock has started ticking, again! Sounds like I won't have to have that 4th round of chemo, if all goes right...but we will see. I will still have to do some chemo to mobilize the stem cells, but it will be nothing like what I have been doing...I.C.E. is no walk in the park! Anyhow, if this gets approved quick, it looks like I will be in the hospital for Christmas...oh well, it is what it is! Move over baby Jesus..there is a new birthday girl in town!!! lol

Today, I am going crazy! I have probably said this before, but I officially HATE staying at home! This is no vacation, it is not fun and if I had hair I would be ripping it out at this point! I gotta hand it to the stay at home mom's out there, because there is no way I could do this all the time. I hate to clean, I don't cook all that often and TV sucks! I have no attention span anymore so I cannot even read one of the 10 books I have lined up (and if you know me, you know I love to read). I can't walk more than a block without getting tired, I am not suppose to be in the sun and I am afraid to exercise because I keep getting this morbid thought that if I strain myself this port will rip out and I will bleed to death - Death by sit-ups....wonderful! I really need to get this over with so I can go back to my life of commuting, working, going to school, homework, kids soccer and complaining that I don't have enough time to fit all my stuff into one day! hahahaha

I guess that's enough bitching for today. Gotta get the house cleaned up, play fetch with the dog for 5 minutes, hunt down some ants and maybe play some Wii.....UGH!! I did not sign up for this and I do not appreciate it being handed to me!! I am going to go ahead and keep fighting, because that is what I do, but there better not be a third time around because I will be pissed and heads will roll!!! hahaha!!

Oh wait - on a positive note...Yesterday was a blast! I got to hang out with Amanda for the day (Allison's 4-year old) and we painted her toe and finger nails, watched Finding Nemo, The Santa Clause, Lilo and Stitch and The Lion King. We did 3 hours of crafts (meaning we cut up a crap load of construction paper - lol) and made a complete mess of the house - good times!! Then I went and picked up her brothers Jeremy and Connor and hung out till mom came home. While we were waiting, the boys spotted a cricket in their lego's and Jeremy decided to throw a shoe at it...making it jump at me!!! I screamed, Amanda screamed and Jeremy screamed like a girl!! Connor remained calm and was not too happy that Jeremy squished it, but did the manly thing and swept it up into the dust pan and took it to the trash...what a good boy! LOL Allison came home like 2 minutes later and we were all still laughing and trying to get over the attack of the cricket!

Have a fabulous day kids!

xoxo - Joni