Thursday, August 29, 2013

Update on the Von St. James Family

Well this is a little embarrassing, but I just remembered that Cameron Von St. James from this post sent me a link to a video that his wife Heather did.....over 3 months ago. Sorry Cameron and Heather for taking so long, but here's the link to the video!!

Heather's Video

(I can't embed videos, for whatever reason. Sorry!)

I follow Heather on Facebook and love her positive attitude (and cool hair and tattoos!). Check out her video :)

Btw......I leave for my cruise tomorrow, and my best friend is having her baby tomorrow too! Exciting weekend ahead!

Friday, August 23, 2013

Let's Catch Up

I really want to start blogging more, because I know if I do, the posts will be shorter, and less boring to read, and because I want to start sharing more about the melanoma and cancer community. So we will see!

I follow a lot of melanoma related blogs, and sometimes bloggers share information that inspires me to write my own posts. Recently, Chelsea of Adventures With My Enemy Melanoma (who was one of my biggest inspirations to start my own blog) mentioned Is My Cancer Different, a movement dedicated to educating people about how different cancer can be. Did you know that "cancer" is really just a catch-all, generic term? Cancer is defined as uncontrolled growth of abnormal cells in your body. Because there are many different types of cancer, and even the same cancer can behave differently in different people, everyone's cancer IS different. If you or someone you love has been diagnosed with cancer, go check the website out!

I have always (I like how I used the word always, even though it's been 2 years since my initial diagnosis) felt like "my cancer is different". It started in my skin, not inside my body, the treatment is somewhat different, and I have never felt like I had cancer. People sometimes use the word "sick", and I hate that because I didn't and don't feel sick. I definitely feel out of the ordinary in the waiting room in oncology, and when I had radiation. My doctors and nurses love me because I'm healthy and always happy, when a lot of their patients don't have that good fortune. I haven't gotten nauseous or lost my hair (and certainly not my appetite) or had one side effect from immunotherapy - which is another thing, because my cancer is different, traditional chemotherapy doesn't work as well in most cases. This is both a good and a bad thing, good because I don't have to endure difficult chemo, which kills both good and bad cells, usually makes people sick, etc; bad because it means melanoma is less understood than other types of cancer. 

Some people who have had melanoma caught it earlier, before it spread to their lymph nodes or anywhere else, and it only required surgery to remove the skin around the primary site. Some of these people are very active in melanoma awareness, and I've read stories where they've been hassled a little because basically, their cancer wasn't good enough. Seriously, people out there who are doing what they can to help prevent this terrible cancer from happening to others, have actually been ridiculed because they didn't suffer quite enough? But, read anything on the internet and you will find that there are a lot of hateful people out there with clearly not enough to do! Even within a cancer centered community. 

Whether you were fortunate enough to catch any kind of cancer in the early stages, or at the later stages, whether you had traditional treatment, none at all, are in a clinical trial, or went holistic, your cancer IS different, because you are different. Whether you suffered a little bit or a lot, your cancer matters and you matter. 

In other news.....look what I did last weekend:

I've been wanting to do this for about a year now, and on a whim while at the tattoo/piercing studio with some friends to get our ears pierced, I decided to just go for it. Hurt like nobody's business but was finished very quickly and I love it! I already want a cross on the other foot :)

Next weekend I set sail on a cruise to the Bahamas with a group of girls, so if you hear about a bunch of shenanigans on the high seas, we probably had something to do with it....let's see if I can learn my lessons and avoid sunburns while I'm out there!

Can't Wait!!

Thursday, August 8, 2013

Cancerversary Take 2

I wrote about my "Cancerversary" earlier this week, but I neglected to write about one very important thing - how thankful I am for so many people that are in my life! When you go through something difficult, you realize even more how much your loved ones mean to you. I already knew I had awesome family and friends, but the love that was shown to me over the last year has been unbelievable. 

So, to the friends who visited, who offered to drive me to appointments or sit with me during immunotherapy, who brought me food and presents (and braided my hair since I had one arm that was incapacitated!), thank you!! There were people I didn't even know that well that offered their encouragement and favors. Friends of my mom's came to hang out with me after surgery and at doctor appointments, and with her at my surgery. Speaking of that, a ridiculous amount of people came to the surgical center for my surgery. Thinking about the overwhelming support I was given gets me a little emotional. People at work were also really great during that time. I have worked at the same construction company since I was a senior in high school (besides a year and a half long stint as a flight attendant!) and I've worked with a lot of the same guys during that time. Almost every single one of them called, texted, or Facebooked me to see how I was doing while I was out of work. My boss was especially great as well, and he's been really patient with me with all the time I have to take off of work for appointments, scans, immunotherapy, etc. There are only 2 of us in the office so 1 person being gone really makes a difference but my boss and office co-worker never complain about it. 

And of course I want to thank my parents and family. At 35 years old, it's really comforting to know that your parents would still do anything in the world for you. Even though I tell them I'm fine, they still won't let me go to get my scan results without one of them there. After my surgery, when I was home for a week and couldn't drive, they came over every day to check on me and bring me food. I can't even begin to list things they've done to support me, so I'm just going to say THANK YOU to the best mom and dad I could ever ask for. And another big thank you to my brother, sister in law, step-mom and stepsisters who visited, brought me the yummiest food, and offered prayers and words of encouragement and love.   


Wednesday, August 7, 2013


I'm in the middle of celebrating my "cancerversary" - the 1 year anniversary of finding out that melanoma had returned and having surgery to remove it, and staying cancer free. I found out on July 26th last year (which happens to be one of my best friends' birthday!) that the cancer had moved on to my lymph nodes, and I had them removed on August 8th. Mid July of this year, I had my routine scans, which came back all clear, so at that point I decided I would go ahead and call it my cancerversary :)

At the same time as my scans, I had my 6th infusion of ipilimumab, and I'm happy to report that I have had no side effects! If I were in a blind trial with a placebo, I would definitely think I was getting the placebo! I have 2 more infusions to go, and I'll be done with that, hopefully never to visit the chemo unit again. I'm not sure how often I'll go for scans at that time, because right now I'm required to have them every 12 weeks at treatment time. I'll do whatever my doctor recommends, but I'm hoping to go a little less frequently by the time I'm finished with the trial; that will be almost a year and a half after my surgery (January 2014 will be my last ipi infusion, if all goes as planned). 

Speaking of my doctor, let me brag on Mayo Clinic a little bit. I read a lot of blogs where melanoma patients go to really great cancer centers of excellence - FYI, if you have melanoma, you definitely want to see a melanoma specialist, that's basically melanoma 101. Something I've noticed about a lot of others' experiences is that they have to wait for hours after their scheduled appointment. I know it's worth it to them to see great doctors at great hospitals, but it's something I'm really grateful to not worry about at Mayo! For certain appointments like blood work and scans, I may have to wait a little while. But when it comes to my oncology appointment, I never have to wait long. This is especially great when I'm waiting for scan results, but it's nice any time. It's the same with my appointments for immunotherapy (the ipilimumab), and the dermatologist. On days where I have an appointment and plan to go to work afterwards, it's good to be able to pretty accurately say when I'll be finished and heading into work. They have really made my scheduling so much easier and I'm really appreciative of that. I highly recommend them. 

So, all my news is pretty good. Unfortunately, there are plenty of others in "mela-land" who don't have such great news. The most heartbreaking is Addison of Addison's Army Against Melanoma, who is only 2 years old and was diagnosed with melanoma at 3 months old - it was passed through the placenta from her mother, who passed away when little Addison was about a year old. Addison has been doing so well, but as of yesterday, her Facebook page was updated to say that she has a brain bleed and there is nothing more that can be done for her. I've never met Addison or her family, never spoken to them, but my heart is so heavy for all of them. I suppose the blessing is that for Addison, she does not comprehend what is happening, but I cannot imagine how gut-wrenching this is for her family, who have already endured the loss of her young mother (Addison's mother, Briana, was only 33 when she passed away). Certain stories touch my heart more than others, and this is one of them. Please visit their website or their Facebook page to learn more about this family.

Addison is one person, although one extra special case, but there are others who are finding out they have new tumors, that their treatment isn't working, that their insurance won't cover the drugs they need, and the list goes on and on and on. Some of these people have melanoma in their genes (like me), some of these people have melanoma caused by too much sun exposure (probably also me), and some of them don't have any obvious reason to have gotten melanoma. We're closing in on the end of summer (although in Florida, our summer goes well into the fall), but there's still time to practice sun safety. I used to hate to hear this sentence, and I still do, but the truth is, THERE IS NO SUCH THING AS A "SAFE" TAN. (unless it comes from a bottle, and even then there's issues with chemicals, breathing in sprays, etc, but it's definitely better than the sun!). I don't think we should hide from the sun, everyone who knows me knows I love a Sunday Funday out by the pool, but you can wear hats, UV protective clothing (which I think is great for kids to cut down on the amount of sunscreen application they have to endure), and of course, sunscreen. Lots of high SPF sunscreen, applied every 2 hours or so. If your skin gets tanned, it is damaged. If it gets burned, it's REALLY damaged. Please, protect the skin you're in, and protect your kids' skin too. A few sunburns doubles your chances of getting melanoma. And if you're a woman, and have babies in your future, it could not only be your health in question, but your baby's as well. 

Of course, you can't guarantee that you won't get melanoma or other skin cancers just by being safe in the sun, so the really important part is to visit your dermatologist for a full body skin check once a year, and keep an eye on your freckles and moles, watching for changes and immediately have any suspicious spots biopsied (with a punch biopsy, no shaves!) and sent to pathology. I can't even stress how important that is, so many doctors have dismissed a funky mole, only later to find out it was skin cancer. If it bugs you, get rid of it. If your doctor won't listen, find a new one. 

Alright people, I've rambled on long enough! Thank you for reading this far :)