Miscellaneous randomness :o) - I believe I have lost my mind!

I need to get back in the swing of things with this here bloggy adventure! I get busy watching TV, doing laundry, walking to the mailbox, playing super Mario Brothers and vacuuming that I forget to make my entries :o) So, here we go....

Life after transplant (take 2)
I think that I have mentioned before that my fingernails started to peel, just like the skin on the palms of my hands and the soles of my feet. It is getting to the point that they are getting sore and THAT is because I can't stop picking at them - UGH!!! The peeling itself does not hurt, but when you tear the nail away, like I do, then it tends to hurt...bad, bad!! Here is a pic of what the suckers look like - eewww!!!


Another post-transplant issue that I have mentioned before is that it is taking FOREVER for my hair to come back. I finally started noticing that my eyebrow was growing....yes I said eyebrow, as in singular! My right eyebrow started coming back like crazy last week, leaving the left one in the dust! I took a picture a few days after I noticed it and at that point, it appeared that I had about an eyebrow and a half...LMAO - here is that picture.


And....drum roll please...My hair on my head FINALLY started to grow the other day! Woo Hoo!! It took 64 days post-transplant for me to get peach fuzz with some dark hair and, of course, grey sparklers to grow in. It isn't much, but it is a start and I will take it! I cannot wait until the day when I leave the house hat and/or beanie-free! Summer is coming and I do not want to be wearing hats when it is 110 degrees outside, that's for damn sure! Here is the pic of my itsy-bitsy-teeny-weenie little bit of hair growth...hehehehe

Okay - so it barely looks like a 5 O'clock shadow, but I am over the moon about it! HA!

I have a friend on Facebook that I met through another friend and she too is getting ready to have a transplant. She mentioned that she felt that the doctors were not giving her all the information that she needed...soooo, leave it to me to spill all the gory details. There are two things that I feel strongly about: 1. I think they should prepare you for everything, whether or not it is going to specifically happen to you or not..I feel that you should know. I did not know a LOT and was not ready for a LOT. 2. Everyone is different and just because I say all the things that happened to me, it does NOT mean that it happens to everyone. Some people can have all of it, some of it or even none of it. But, I think being prepared would have made me not so irritated when some things did happen to me. So, I sent her an email that gave her the nitty gritty...some of it is TMI - but you know me, when have I ever held back (well, you may read a certain personal tid bit here that I never mentioned out of sheer embarrassment, but I don't care anymore - it is what happened!) LOL....Here you go....

Okay, so the first thing you want to do is get your doctor/transplant coordinator to get to work on getting you approved for Kepivance. This is the medicine that helps to cut down (but will not prevent) on the mouth sores that you are likely going to get. My coordinator fought with my insurance company for a month before getting it approved. The insurance will say that it is a experimental drug, but it is NOT, it is an FDA approved drug that is for preventative reasons. FIGHT for this drug and fight hard, you will need it. I finally got approved and ended up being allergic to it - go figure! When you get it, you have to have it administered via IV for 3 days before you are admitted and then you have it for 3 days after transplant. I asked my nurse if a lot of people get this drug (because it was 24K for 6 vials) and she said no, most people don't fight the insurance company for it and their sores are worse. I have a pain in the ass HMO and was able to get approved. Okay - now that that is out of the way, here is the nitty gritty of the hospital stay. It will depend on the regimen that they put you on, I had 4 days of TBI (total body irradiation) and then two high doses of chemo, one of etoposide and one of cytoxan...then they did the transplant. It took me 2 days to start feeling tired and on day 3 I threw up...not too bad. I developed rashes on my arms, legs and head that stuck around for about a week and a half I think. You will get diarrhea..and this may be TMI, but whatever you do - DON'T FART!! hahahaha You will shit yourself! Trust me...I did it three times - you would have thought I would have learned after the first one! UGH!!! LMAO Once this starts, they will probably have you crap in a cup so they can test you for C-Diff infection...this is nice and mortifying. Every time you pee, you have to pee in a hat thing so they can measure it. I would just dump mine and write it down every time and tell them. The mouth sores start about a week and a half in and, for me, were the worst part. Not only do they form in your mouth, but they go down your throat. They gave morphine drip plus a pump if I needed it - and I used that sucker! I guess the worst part about the sores is that they have you take pills like 4 times a day and it is hard to swallow...and water hurt my throat. My savior was drinking ensure..I didn't eat for 2 weeks but I drank 4 of these a day and used it to take my pills, which helped A LOT...so if you get the sores (not everyone does) then try the Ensure - it is a great help. Hmmmm what else...Oh, you will be made to take a bath every day and they prepare it for you with antibacterial soap. Then they give you this powder called Nystatin that they tell you to put on your arm pits and groin to reduce infection in your "folds" LOL..I used it like twice in the time I was there...I'm a big rebel...haha Once you have the transplant, you are going to be really really tired so just sleep. BUT, you want to get up and walk at least once a day in order to keep your strength. They would let me out of my room to walk the unit as long as I wore a mask...they actually made me get up and walk. When they do the transplant, you will smell a funky smell that people say is like vegetable soup...warn your visitors because you will smell like this for about 2-3 days. You won't smell it, but they will. Your counts will probably bottom out about 2 days after transplant and then start to rise. They will probably give you neupogen shots for a few days after to boost your WBC's...oh you will have to also do these for about 10 days before you go in. I did mine myself at home, it is pretty easy - tiny little needle in the belly that doesn't hurt at all. I ended up being in the hospital for 20 days and the day of discharge, I cried my friggin eyes out all day long...I was so scared to leave that I didn't know what to do. It took me a couple of days to get over that. They had me come back the next day to be checked and then 3 days later and on the 4th day, they took out my pheresis catheter (the one they will install for your harvesting and use for everything after that) and I was able to leave the hotel by the hospital and come home. Now I go every few weeks to be checked and I am going well. There are after effects that I believe are more related to all the radiation. My nail beds swelled up and now my fingernails are peeling off. The skin on my entire body peeled, even the bottom of my feet and palms of my hands. My feet are still peeling (along with my nails) and they are pretty sensitive. My hair just now started growing - 60 days post transplant. I finally have peach fuzz and some "real hair" mixed in. Lastly (I think) is that I lost my taste buds completely and it took about 5 weeks for my taste to come back. This was something that no one told me and pissed me off...not that I could have prevented it, but I could have been prepared at least - ya know? Now....REMEMBER that everyone is different....you may get all of this, some of this or none of this....This is just the stuff that happened to me. I wish I had someone tell me ahead of time so I was ready. If you have any questions AT ALL...let me know and I will do my best to help. I don't know if you read my blog at all, but I did type it when I was in the hospital and went through the whole transplant process. Here is the link to that entry http://no-surrender-take2.blogspot.com/2011_01_01_archive.html

I don't want to scare you with any of this, I just want you to be prepared. It will go by so fast, you wont believe how quickly 3 weeks can fly. Don't be scared, it really isn't that bad. We have been through lots of crap with chemo, this is just a little longer stay in the hospital and it is our chance to start over...clean slate! You got this mama!!!

Ohhhhh brother, I just re-read that to myself and cannot believe I am posting this stuff. BUT, she (and everyone else getting a transplant) needs to know not to fart, it is just not pretty! LMAO!!! Yes, I am actually laughing right now as I type this junk!

Anyhow, I think that is just about where I am with post-transplant stuff. I did have a low-grade fever last night, went to bed early and feel much better today. I think my head keeps telling my body that I can do a lot more than I can and it is time to just RELAX for a while....so, I guess I will - blah! I see the doctor on Friday, so I will let you all know how my counts look and how I am doing then :o)

Light the Night...
As you all know, I am gung-ho on this Light the Night stuff. I needed something meaningful to help me pass my time and Light the Night was just the ticket. Anyone who reads this knows that we started Team Joni last September and had a short 6 weeks to raise money. We made a phenomenal $4300+ bucks!! Now, I thought that was pretty good, until Monday when I found out that it is pretty damn great! I found out that we actually came in 3rd place in the top fundraising family and friends team! We even got a trophy...how cool is that!!!


This years goal is to raise $10,000 and we are well on our way with already raising $1005.00. On April 10th we are going to have a bake sale at the Run-Through-Redlands, hopefully that will generate some money to add to our team goal. I do not have our booth number yet, but I will post it as soon as I have it. BIG THANK YOU to Allison Waymire for organizing all of the bakers - we couldn't have done it without her, and them! I will also post all of their names as soon as I have them, so we can thank them properly :o)

OMG - a wasp just came flying into the livingroom...eeeekkkk!!! I'm allergic! WHEW, don't worry, I got him with a broom and wasp killer! Go me!

That's it for now...my fingers hurt from all this typing!

xoxo - Joni

What have I been up to?

So, what have I been doing with all of my "free time"??? Mainly I just sit around this house bored out of my mind. It is almost as if recovery is the worst part of this whole process....well, for someone like me that is use to burning her candle at both ends. Although, I do have to admit that I have my limits and they are pretty limited. If I get a few loads of laundry and the carpet vacuumed in one day, that is a pretty productive day for me. My mind races all day and there is so much I want to do, but my body won't let me. I did start using my Wii Fit last week and managed to do 17 minutes on day 1 and 25 minutes on day 2...then we went camping so I haven't been on it for a few days. I am trying to slowly work my way up to actually feeling like I am working out. I am, however, thoroughly convinced that the step aerobics on that damn game was designed to kill me....I'm just saying!

Oh...and I changed my Wii Mii person to look more like me...Bwahahahaha I crack myself up!!!



Sooooo, lets talk about the camping trip, shall we?? It started out with a bang on my part...of course! So, I forgot the dogs leash and harness so we stopped at Rite Aid to get him one...why we didn't just come back home (3 blocks) I do not know! Anyhow, I get back in the truck and we are on our way with a new leash - no harness. A little while later I am bored in the truck and decide to open the leash, which had 3 zip ties on the package. I was going to try to cut thru them with my keys when Bret brilliantly suggested I use the knife in the console...NOOOOO BAD IDEA....STAY AWAY FROM THE KNIFE IDIOT!!!! I cut thru the first one and then the second without incident....and then it happened! The third one was a little one, requiring more umph to cut through....so there I go UMPH and then I scream "OUCH" followed by "OH SHIT" as the blood shoots out of my finger onto my brand new jeans!! Crap...low platelets = lots of blood when you stab the crap out of your finger with a sharp-ass knife! Thank goodness Bret has a little first aid kit in his glove compartment. A butterfly and a band-aid and I was good as new :o) It does hurt like a son-of-a-gun typing right now...but I do this for you and I hope I am giving you a good chuckle right now.

Back to camping....LOL We went to Bolsa Chica and got a beach side spot and it was beautiful out for the most part. We took the boys and they met some kids and played lots of kickball, baseball and soccer in the sand. Landon didn't even come in until after 9pm last night...and would have stayed longer had we not made him come eat. (Oh and speaking of eating...Bret made enchilada's, pizza and cinnamon rolls all on the bbq - it was awesome!!!) I was glad the boys met other kids because us having the dog there kind of hinders what we can do since we can't leave him alone. We are thinking that next time we go there, Elliott may have to stay home so we can have more fun...sorry pooch! Here are some pics from our trip....

Daylon sunning with Elliott....ummm someone forgot to take their socks off!


I'm not really a superhero - I just play one in a blog!


The boys playing ball at sunset


Still no hair - eeekkk!


Aweeee :o)


As you can see from the pictures above, I am still yet to grow a hair on my friggin head! They said that the radiation makes it take longer, but I was hoping to have something at this point...7 weeks out and not even peach fuzz. I am starting to think that I may be bald forever! So, I walked around the beach and camp without a hat and didn't care who saw. I went out in the front yard today without a hat as well. I figure if I am going to be bald, I may as well embrace it in small incriments. Don't get me wrong...this pisses the shit out of me and I want hair dammit - BUT I will remain positive and be happy with what I have - MY LIFE!!!

No new doctor visit info to report - only because someone effed up and didn't get my insurance approval over at UCLA, so they are working on it and hopefully I will see the doctor next week. Of course, you will get a full report when I do :o)

I think that's it for now...I am tired and want to sleep in my own bed!

Quote of the day:
"Honey don't worry you still a hottie"

xoxo - Joni

My Light the Night newsletter entry...

Remember back in December, light the Night asked me to write some of my story for their newsletter? Well, I found out yesterday that they are being mailed out this week! I am famous!!! Hahahahaha! I held out this long, and now I want to share with all of you what it is that I wrote for them/me/you. Here we go...

“Superwoman,” “Joni-Girl,” and “Joni-butt” are a few of my nicknames, but the one that I am most proud of is “Captain” of “Team Joni”. “Team Joni” was the name I came up with for all of my supporters when I found out that I had Hodgkin’s Lymphoma, for the second time. And then the name took on a whole new, more important meaning and mission, it would be the name of my team for the 2010 Light the Night walk.

I was diagnosed with Stage 2B Hodgkin’s lymphoma, non sclerosing type in September of 2010. Since this was a recurrence for me (I had the same thing 18 years ago), I soon found out that I would automatically have to have a stem cell transplant and that due to the recurrence, the staging is actually treated as though it is stage 4. I was not devastated; however I did cry and have a pity-part with my husband. So, the next day, after I got rid of my hangover, I was ready to rock and roll and kick cancer’s butt – again! Currently, January 4, 2011, I am cancer-free and I started harvesting my stem cells today for my transplant on January 26th.

One day, early on, my sister suggested that I start writing a blog to tell everyone what is happening and get things off of my chest. She said “you are such a good writer; I bet this would be great for you.” This is the day that my nameless blog was born. I had no idea what to call it and then a friend suggested “No Surrender – The Superwoman diaries.” I thought it was funny and then figured “why not?” I have been writing my blog for four months now and I can not tell you how great it is. It lets me update everyone, get things off my chest, tell funny stories and generates a tremendous amount of support from friends, family and even strangers. It has also been an avenue for fundraising for Light the Night as well as thanking everyone who donated or took part in any way.

Why Light the Night? In early September, I decided that I wanted to walk in a charity walk that would help people like me. I had my sites set on a walk that specifically helped those with blood cancers and this one was the perfect fit. Problem was, it was in 6-weeks and I had no idea how I was going to go through treatments, fundraise or even be able to participate in the walk itself. None of this stopped me or my soon to be “Team Joni” that quickly became 35 walkers. By the time October 16th came, we had raised over $4200.00, had t-shirts donated and I obtained a wheelchair to be pushed in, since I ended up finishing a weeks worth of chemotherapy the day before. I was going to participate in this walk and I didn’t care how I did it. I am so glad that I did also, the walk itself was great and, more importantly, we were able to raise a good amount of money that will help people.

Since we were able to raise over $4200.00 in six weeks, can you imagine what we can do in ten months? As soon as I get out of the hospital and get back on my feet, I plan to rally “Team Joni” and start fundraising for this years walk. Our goal is going to start at $10,000.00, and I know we can do it. I have a few ideas that I will share on my blog for everyone to see, hopefully it can help other teams with their fundraising as well.

My goal in life is to remain positive through all of this and to encourage or inspire others who are in a similar situation to also keep their heads up. So, get yourself a nickname, have a pity-party (you are entitled), put on your positive pants, write a blog, participate in Light the Night and set your sights on the ultimate mission against cancer – Search and Destroy!

So there you have it, my first published paper...hahaha I am suppose to get a color copy of it emailed to me so as soon as I do, I will post a picture of it. I hope that people that are in a similar situation to mine, or even people that are just feeling down will read this and gain a new perspective on life. Life is full of speed bumps, some small, some a mile high...but all of them can be defeated with a little hard work and a positive mind set.

And now..to my fundraising! It is time to start getting Team Joni on the map! Here is the link for donations or to join us on the team. I am not asking for a week's salary, just a few dollars or even spare change....everything counts in this battle. You know what would be awesome?? If we can get 100 walkers that each raise $100.00....we would be the largest team out there and raise our 10K easy as pie!! Lets do it Team Joni!!! I know we can. If we got 35 walkers in 6 weeks, 100 is nothing in 8 months!

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


Lastly, I went to UCLA yesterday for a check up. My white, and red counts were normal and my platelets dropped a little, but I was told that is normal too - they were 89K. My liver enzymes were a little elevated, but they said that they have been ever since transplant so since I am consistent that it is okay. I decided not to do the clinical trial that they want me to do. It is too far to drive 3 times a week, the paperwork mentioned that there can be bone density issues and I already have osteoporosis so that's no bueno and the papers also said my insurance will be billed for some stuff and I am not too sure what COBRA is going to cover....so I said no. Hopefully I made the right decision.

After my blood draw - which I had the best nurse ever access this port without numbing stuff (Mari and Megan are better of course, they numb me hehe) - I decided to walk over to 6E in the Ronald Reagan building. Some of you may remember that this is where I was living for 3 weeks. I wanted to see if any of my nurses were there. Low and behold, my nurse Heidi was there along with my caregiver Adrianna, the head nurse and a student nurse (their names escape me). They were very nice, gave me hugs and told me that I looked fabulous...don't look like I am one month post transplant. I laughed and said "that's because I have all my make-up on now" LOL We chatted for a little while and as I walked around the corner, I could hear them talking and saying "she really does look great, she is a beautiful girl" And THAT my friends...totally made my day!!!

I never saw the doctor, he got stuck at the other office, so I got to see Chrissy the NP...who I love! I told her that my hair is not coming in at all and she (and the nurses earlier) said that radiation takes longer for your hair to grow back. WHEW, I thought I was going to be bald FOREVER! I know you people say I look good bald, but I am NOT prepared to look this kind of good forever! hahahahaha I am 5 weeks post-chemo and radiation, so hopefully I will start seeing some growth soon. Last time I had about 1/4" of hair by now - jeeeeezzzzz!!!

That's about it for now....except for a few Thank You's. Thank you to my mom and step dad (Cindy and Jim)as well as Bret's dad and step mom (Gene and Lucinda)for all of the help that they have given us in the last few months. Without you, we would not have made it. We love you and are eternally grateful for your love and support! And Thank you to my hubby Bret for bending over backwards to do more around here and help me while I have been too weak to do much of anything - I love you!

xoxo - Joni

Life after transplant...so far

It has been a while since I posted anything, but its not because I don't love you...its because my computer decided to take a crap on me a few days before I came home. So, I am going to do my best to recap the last 2 weeks :o)

Lets see, I was released from the hospital on February 6th and had an appointment with the nurse practitioner on Monday and then again on Thursday with her as well as the doctor. All of my counts were on the rise with the most important at the time being my platelets...because since they were at 87K that meant I got to get my pheresis catheter out on Friday! YAY. Getting that thing out was quite the experience...to say the least!

First, Mr. Personality came in and actually talked to me a little bit. He is the same surgeon that put it in, and said all of 2 words to me before surgery, so I was pretty surprised that he even said anything. He proceeds to lay me down and take some metal tool to pick the scab off that had formed around this thing...OUCH!!! THEN he shoots me up with the lidocaine to rip the catheter out. Now, why the hell did he not do the numbing before picking out the monster scab is beyond me - because that was the part that hurt the worst! Anyhow, all numb and he grabs a hold of this thing and rips it out...just like that! And to my total shock, this tube that went up into my jugular was a freaking foot long!!! It had to have gone clear up into my brain!! I have a picture, but I will leave that one out...its kinda gross. I applied pressure onto some gauze for 15 minutes, they bandaged me up and sent me packing.....I was going home!

Fast forward 2 hours and I got home to my couch and 65" TV (yea the one that I didn't get to watch the Steelers lose on....LOL) Unfortunately, Bret had to work until 9pm and we didn't have the kids that weekend so I was on my own with the pooch, Elliott, for a while. I think he missed me because as soon as I was settled on the couch, he was up my butt....crazy dog! Here is a pic of my homecoming picture with Elliott...haha


It has been 2 weeks and 4 days since that picture was taken. I look a lot healthier now, and have gained 3 pounds back. I ended up losing about 21 pounds so I guess gaining 3 is not so bad. Although, I like the weight I am at now and don't want to gain anymore!

In that 2 weeks since I have been home a lot has happened. Initially, I was very very tired and it took everything I had just to get off the couch to walk to the bathroom or bedroom. The energy level that I had was pretty much non existent. Every day it gets better though and yesterday I actually went out and shot a few hoops with the boys :o) I didn't last very long, but it made me feel good to even last 10 minutes. I know that I have to take it easy since I am only 1 month out from transplant, but when I start feeling good, I just want to do everything I did before. My body tells me when to throw in the towel though, and I am a good listener!

My taste buds were also gone and have still not returned to normal. I can tell that they are getting better but stuff still tastes funny. I hope they return to normal soon because I am getting sick of this taste - bleck! I describe it as it tastes like I have been chewing on a piece of foil.

Another side effect that I have is the hyperpigmentation of my skin. I look like I went out and got a sunburn that turned tan and is now peeling...bad and everywhere! The skin on my palms and bottom of my feet was really weird because before they started to peel, it was like a callous and I could not feel my fingers or heels. The skin came off in big 'ole chunks (with my help)and now I can feel again. I swear the crap that they don't tell you before you do a transplant....grrr! Not like I could have stopped it, but at least I could have been ready for it, right?? Yes - right!!

I got a few giggles the other day reading the stuff that I was posting on Facebook from the hospital. A lot of it I don't remember saying so it is extra funny. There was one post that was in the middle of the night and I was talking about my machines in my room snoring. Ahhhh the effects of having 24-7 morphine drip with the added bonus of a button to push when you want more....apparantly I wanted more a lot! I think I was pretty much doped up for 2 weeks! when I think back, it wasn't the greatest feeling to be on that stuff so I am glad I am now drug-free...hehehe

I guess that is it for now...I know I am missing stuff so I will update as I think of it.

xoxo - Joni