Greetings from the couch on one of my treatment recovery days!
Before I jump into my most recent scan (spoiler alert: everything looks great!), I wanted to pass along two great sources of info that apply to all cancers, not just melanoma.
First, I encourage you to check out the blog post Don’t Believe the Hype – 10 Persistent Cancer Myths Debunked. This was posted by Cancer Research UK, and it was so helpful for me! As soon as I was diagnosed, a million different opinions came at me all at once. Everyone has solutions or suggestions… and all of them are different! I was so overwhelmed, trying to sort out good information from superstition. When I ran across this blog, it calmed my frazzled nerves and gave me a lot of peace.
Second, if you want a basic understanding of cancer, its history and its treatments, I highly suggest the Ken Burns documentary “Cancer – The Emperor of All Maladies.” You can watch full episodes here or on Netflix. There are 3 long episodes, and I found them extremely interesting. However, don’t watch them if they will be emotionally disturbing to you or if you are in a raw place in your journey.
Last week I received great news – another totally clear CT scan. There is no evidence of melanoma in my internal organs, and the original site on my arm is not showing any recurrence.
One of the most common questions I get is: “So, does that mean you’re cancer free?” The answer is that we won’t ever really know. While “cancer free” sounds very hopeful, I have learned that it is an over-simplification of a very complex disease. Many doctors refuse to use this term, as most types of cancer can hide and linger, popping up many years later.
Instead, they label people like me as “NED.” This stands for “No Evidence of Disease.” While there may be cancer lurking in there somewhere, doctors do not see any evidence of it. It is the best possible scenario! I have been NED since October, when all known cancer had been removed (through cutting away the original tumor in my arm and removing a cluster of lymph nodes).
Now, each time I get a scan, I catch myself holding my breath until I get the results. I am so grateful that each time they have been clear. As of last Monday I am still NED, 7 months after my surgeon told me all was going well.
It can get confusing keeping all the different milestones straight.
- It has been 8 months since I was diagnosed (September 2015)
- It has been 7 months since I achieved NED status through surgery (October 2015)
- I am 5 months into my year of adjuvant (preventative) interferon treatments (Began December 2015)
I’m still on my regimen of 2 interferon injections each week. Nothing new to report. I’m still experiencing fevers, headaches, fatigue, etc. However, all of that is to be expected.
We keep trying to get to the point of only checking my blood every 2 weeks, rather than weekly. However, my liver and white blood cell count haven’t cooperated. We’re still checking it weekly.
I go in every Monday morning, and the nurses “access” my port. This process takes about 5 minutes and consists of numbing the skin around my port, inserting a giant needle, and drawing out blood. Usually I do not feel it at all, thanks to the numbing.
If you do feel the needle, be sure to say something immediately to your nurse. It likely means something is wrong. For me, I have only felt the needle 3 times, and each time there was an issue that may not have been noticed if I didn’t say something. (and yes, each of those three times hurt a lot. ugh.)
A few hours after my port is accessed, I get a call from my doctor. He tells me how my levels looked and whether or not I should proceed with my injections. Yesterday everything looked great, so I gave myself my injection last night and will do another one on Friday.
I had my 3-month dermatologist appointment today, and Dr. Young said everything looks great. She calls herself “paranoid,” and says she is quick to biopsy anything that does not look right. Thankfully, she does not see anything concerning anywhere on my body.
She has been very clear with me that I need to vigilantly protect my skin from damaging sunlight. Below are some of the ways she wants me to guard myself. Even if you have never had melanoma, I invite you to join me in these preventative measures!
- Never use a tanning bed! (I have never ever been in a tanning bed, but many of the melanoma cases she sees are a result of tanning. Even one visit to the tanning bed increases your risk)
- SUNSCREEN! Dr. Young gave me a whole list of recommended sunscreens. I chose Neutrogena sunscreen with Helioplex Technology. Because of my history, I am using SPF 70. If you have never had an issue, a lower SPF is probably fine for you! Check this stuff out here.
- If you want a tan, use fake tanner or get a spray tan. Dr. Young said this is way safer than tanning in the sun or in a tanning bed. It is basically vegetable dye that colors your outer layer of already dead skin. No problemo.
- Schedule a dermatologist appointment. Don’t do what I did and ignore a spot that looks weird. Get it checked!
- You don’t need to be a hermit, but prepare yourself for time in the sun. REI, Eddie Bauer, and Lands End all offer sun protective clothing. Some of it is frumpy and ugly… but some of it is cute! I bought a light-weight gray jackety-cardigany thing at Eddie Bauer, and I’m able to throw it on over just about anything. I also bought a rash guard swimsuit top at Gap.
- Ok, another point about sunscreen (do you notice a common theme?). Throw a tube of sunscreen in your purse. You never know when you will need it! Yesterday I drove an hour to see my family. The sun was coming directly in the window, and there was no way to get away from it. Luckily I had sunscreen in my purse, and I was able to slap some on at a stoplight. Warning from Dr. Young: Don’t leave your sunscreen in your car for long periods of time, as it can degrade in the heat. Carrying it in a purse or briefcase is a better option.
- Hats are important! I’m struggling to pull off the whole floppy hat look, but I’m wearing one anyway! When I know I’m going to be in the sun, I wear a hat with a wide enough brim that it guards my face, neck, and shoulders. Sometimes I can get away with my much-preferred baseball cap, but other times I know I need a little bit more than that.
That’s it for now!
2 thoughts on “7 Months “NED””
Good news on your scan Maggie! I think of you often and it’s nice to be updated. Thanks for all of your sun care tips too! Love to you and your family.
GREAT report, Maggie. Thanks for sharing all that good news! The Suttons.
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