Update 20 Days Post-Op (A Flash Drive, Some Travels, Similar Situations, Being 'Itchy' (and Maybe A Little 'Bitchy'), Work & More Appointments) - 08/28/2012

I can't believe it's been 10 days since I've last blogged - a lot has been going on.  I have been back to work on a limited basis - trying to work more and more; last week I did not work for three days but this week I am planning to work more.

To update on my hip/femur & brain surgery:  I truly wouldn't even realize that I had brain surgery.  I have been feeling good... maybe a little more tired - but doing good.  I received a call from my neurosurgeon's office last week asking if I would willing to be interviewed regarding my surgery.  I believe that the nurse said a local agency (can't remember if it was the paper or the news) as well as a company out of Indianapolis did interviews with all of the doctors that were part of my surgery and they would like to interview me.  He said he would contact them and then they could contact me directly.

The neurosurgeon's nurse also gave me gave me the names of the people involved in my surgery - one of which was the neurosurgeon from Canada who came up with and trained my neurosurgeon on this new surgery.  I was able to google his name and learn a lot about him - the fact that he wanted to be a neurosurgeon at a young age due to his mother having a tumor and what he has accomplished at such a young age is amazing!  It also spoke of his dad teaching him to work on mechanics with his left hand so he was able to perform surgeries with that hand.

They also provided us with an edited version of my surgery on a flash drive.  Ashley and I watched it - pretty cool to see, although I do have to say that it was a little weird thinking "that's my brain"!  They have come up with another amazing way to get tumors out and I am glad to be a part of the process.  (If there is anyone who is interested in viewing the video, I am willing to share with you; just let me know!)

This led me to thinking about when I first found out about having Stage IV melanoma ... I said there had to be a reason and that I hoped that in some way (some day) I could help someone else.  I hope that these blogs, surgeries, radiation, meds, etc and how I react to them help with teaching and learning.  I have some ideas of ways I want to get more word out about skin cancer, melanoma and cancer in general... it's just how to do this.  I am not sure how to start the process but wonder if I need to get more vocal with legislation/government officials regarding melanoma; I am in the beginning stages of planning ways to raise funds for melanoma research (and already received my first 'anonymous' donation); I want to be an advocate to people who are going through similar situations.  If anyone has any suggestions/ideas, please feel free to email me directly at ballz49866@gmail.com

Speaking of similar situations... Kurt and I met a couple while waiting to have my last MRI and the husband has been through a VERY similar situation as I have.  We didn't get their names or information but were able to ask the neurosurgeon's office to try to connect us.  We'd left each other a couple of messages but I finally connected via phone last weekend.  We both had the option of this brain surgery vs. radiation - I opted for the surgery and he opted for radiation.  He is already done with radiation and is waiting for the next step in the process.  I told him about my surgery, that I will be having radiation in the next couple of weeks and then will be seeing my oncologist for the next step.  I found out during our conversation that he also had some issues with a joint - he had a knee replacement - which I find interesting since I was complaining of hip pain for a few years prior to finding out about having metastatic melanoma.  Both of our areas were confirmed as areas with melanoma tumors.  It makes me want to get word out to people who have been diagnosed with skin cancer (melanoma) to make sure that they advocate for themselves and get further testing.  (That's the part of this process where I want to get more information out to legislation, possibly doctors, etc.)  As I do more on this, I will update on my blog!

Finally, today I had a PET scan.  I won't get results (I don't think) until I see my oncologist on Sept 18th.  In the meantime, I will be seeing the radiation oncologist on Sept 4th to get my mask made and then either later that week or the following week, I will have my one-day radiation.  I will also see my neurosurgeon on Sept 10th.

Next, some of the fun things that have happened... Kurt and I went to the Tundra in Green Bay overnight last week with my parents, my brother and his three kids and our kids.  They got to swim, go tubing, etc.  The next day we all went school clothes shopping in Appleton.  Kurt, the kids and I then met up with my cousin, Laurie, and her family (Bob, Kayla and Addy) to continue on to Gurnee/Waukegan, IL (just happens to be an area that my dad lived for quite awhile when he was younger).  Laurie and I grew up with vacations to Six Flags Great America and they had planned on going so I asked if we could go with them.  Last Friday we spent the 90+ degree day there.  Since it was a lot of walking, I did end up renting a motorized wheelchair to get around after walking for quite awhile.  It was A LOT of fun and I hope we can go back next summer!  On the way home we did a little more shopping!

I have been weaning off some of my meds and starting to sleep better at night which is good.  I also don't feel as hungry all the time.  It's a good thing because I have been gaining weight, retaining water and been 'puffy'.  I went shopping yesterday for some new (and bigger) work clothes as nothing fits anymore.  I also am wondering if I am having some allergies to the baby shampoo I've been using - my head is really itchy so I quit using that kind.  Today I woke up and my eyelids were swollen - my eyes have been watering so if this continues I will probably have to make an appointment to see my doctor.

Other than that, we are just gearing up for the kids to start school again next week (Nathan starts 7th and Ashley starts 4th grade) and getting back to some sort of routine/schedule!