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