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March 29, 2013 at 5:19 am #21144
Hi, everyone. It has been awhile since I’ve posted, but thought I’d take a minute to say hello and fill you in on some things that are new in my universe. First and foremost, I passed my one year anniversary since my last melanoma, which was great. As you know, I’ve had many biopsies since then, most coming back as moderately dysplastic. A much better diagnosis than full-blown melanoma, to be sure. After my last bout, I pretty much went into hiding, becoming fairly depressed any time the sun came out. Not a good way to live. Last week, I made a decision to push myself to go outside and enjoy myself. I donned a hat that made me look like my grandmother, put on a long-sleeved swim tee from lands end that has an SPF of 50, slathered myself with sunblock, and went on a hike in Zion National Park. It did my heart good. Today, I covered up similarly, and did 30 minutes of weeding outside. The emotional toll this disease can take can be debilitating. With the help of a counselor, my docs, and people on this site, I know we can work through it all. One day at a time. Hope you are all well and enjoying every minute — Lisa P.March 29, 2013 at 7:21 pm #59848washoegalParticipant Lisa,
good for you! I enjoy travel and I too have a lot of sun damage. Many atypical moles and even more Basel Cell. All I can do is try to prevent more damage. I do the same as you, cover up and be generous with the sun block. It’s not the way I like to live but it’s a heck of a lot better than letting Melanoma take over my life.
One outcome of this is that my Vit D levels have been very low. My GP has been watching that carefully. But I AM alive and healthy.
Stage 3March 29, 2013 at 11:04 pm #59849HoolieBParticipant
Thanks for posting this. Our situations are really similar, and I went through a lot of the emotions you went through, too. It’s nice to know we aren’t alone with those thoughts, huh?
Big hats, UPF scarves and clothing, and finally letting go of caring if I look silly has allowed me enjoy the outdoors again. The dogs have never minded if I look goofy, and the horse sees all that clothing as a bigger canvas for his snot sculptures.March 30, 2013 at 12:26 pm #59850Catherine PooleKeymaster
Just a word of caution to not go overboard with sun protection. You need vitamin D for your immune system to be strong and the best way to get it is by sun exposure (unprotected) So make sure you are getting at least 20 minutes of direct sun on your skin during a sunsafe time, early morning, late afternoon. The sun isn’t our enemy, but baking in it for hours is.
Have a nice weekend and holiday!March 30, 2013 at 7:33 pm #59851washoegalParticipant
Thanks for the tip on the sun…I love the feeling of the warmth of the sun on my skin. The doc just doubled my dose of Vit D. I would love to reduce that! It’s gotten to be such a habit after 3 years we’ll see if I can give myself a break to enjoy some sun time
😆.March 30, 2013 at 8:39 pm #59852 Thanks, Catherine– that’s good and welcomed information.March 30, 2013 at 10:29 pm #59853JenniParticipant Hi Lisa!
I remember those feelings well and I still get them from time to time, but it will continue to get easier. I just moved from the Bay area to LA (so 6 hrs south in CA). I got a bit nervous about it since the sun is stronger. BUT you cannot stop living is what I keep telling myself. I tend to wear pants and t shirts and always a hat (at least a baseball cap, if not something more covering, depending on the sun exposure). BUT my arms get some sun. I don’t get color but I don’t use SPF everyday. IF I know I am going to be outside for hours, of course I will put on some SPF or seek some shade, but if its not 11-2pm (Ish) and the sun is not that strong, I don’t run from tree to tree with a full cape on like I used to. Believe me, I did it. I went to Mexico for Spring Break 3 months after my diagnosis, I looked insanely ridiculous and almost passed out from the amt of coverup I was wearing
Anyways, I just wanted to say, offer some support and tell you we are have those feelings, to some extent. And those of us (ME!) that worry more have them linger around a bit more than others.
Hope you have a good Easter weekend! Going to give my daughter insane amts of chocolate tomorrow, she will be happy
JenniMarch 30, 2013 at 11:18 pm #59854
Great to hear from you Jenni, and thanks for letting me know it gets easier with time. I look forward to the day where I just do whatever it is I have to (don a hat, appropriate amount of sunblock, etc.,) without any anxiety to accompany it. Enjoy L.A!April 26, 2013 at 12:37 am #59855jenseanParticipant Hi Lisa,
I understand completely your fear of going outside. I am so frightened when the sun is out to even step foot outside. I was diagnosed with stage 2a melanoma last March and have had two subsequent ones since then not to mention many “atypical mole” biopsies. I do have dysplastic nevi syndrome which puts me at high risk for multiple primaries. My last melanoma was on my scalp which fortunately my hair stylist noticed because it was underneath a bunch of dark brown hair that I have and was a very thin melanoma. I have everyone under the sun telling me not to be afraid, you need to live your life normally, blah, blah, blah…..I have heard it all and I am still afraid. I have gotten a tiny bit better but I still have complete anxiety about the sun. I bought a really expensive sunscreen that has no chemicals in it (my dermatologist urged me not to use sunscreen with the chemicals). It is an SPF 50 which is what she recommended and I am to reapply every two hours if I am outside. Obviously, I wear a wide brim hat, huge sunglasses, and along with the sunscreen like to keep my entire body covered with a light shirt or capri pants if it is warm out. I know it is not the best way to live but for now it is the best I can do. As far as vitamin D, I do know that melanoma patients tend to be deficient in vitamin D….ironic isn’t it?! I take a very high dose vitamin D supplement given that I am not getting any from the sun. You are definitely not alone in your fear and if you want to chat feel free to e-mail me.May 1, 2013 at 10:20 am #59856YankeesGirlParticipant
I can completely relate. I too was diagnosed with three melanoma last year, 2 in-situ and 1 “early” stage 1b. Yup….all in the year that I turned 40 yrs old. I had anxious thoughts about being outside on sunny days, especially last year. I love gardening and all of the other outdoor activities that accompany warm weather. I apply spf 50 daily to all exposed skin, and wear a wide-brimmed hat with spf50, long sleeves, and long pants when working in the yard. Not the best of fashion statements but who cares! I seek shade whenever possible. Like many others, I am Vitamin D deficient and take 2000iu of D3 per day as prescribed by my doc. My levels are checked periodically. This is the card that I have been dealt, and I will work around it. Sure, it gets me down at times, but I try to keep it all in perspective. Mine were caught early (although I would have liked to have caught the 1b at in-situ). I can’t wait to get out in the yard again this weekend…weeding, edging and mulching the garden beds. Look for me under my big hat!
Take care and continue to practice safe sun smarts. You are doing everything that you can to stay on top of this!
Age 41May 1, 2013 at 1:27 pm #59857
Thanks, YankeeGirl! It’s supposed to be 70 and sunny this weekend in Seattle, so I intend to use a good amount of my sunblock, don my new spf shirts, stick on a widebrimmed hat, and get out there, myself!May 1, 2013 at 1:42 pm #59858cohanjaParticipant Is there any research that has shown UV exposure causes metastasis? I’ve only seen that it causes primary melanoma. It’s ironic that melanoma patients hide in the dark after a diagnosis – the horse is already out of the barn right?May 1, 2013 at 3:01 pm #59859bon15Participant I fully agree with Cohanja.
I was diagnosed with stage 1a melanoma on my leg last year at the age of 54 and can honestly say that I had not exposed my leg at all to the sun for at least the previous 15 years, nor much else of myself for that matter as I never laid out in the sun or went to tanning salons. I am convinced my melanoma stems from my childhood when I had at least several bouts of bad sunburn, causing redness and prolific peeling but not blisters.
I do enjoy walking and, since my diagnosis I do wear long sleeved SPF clothing rather than sunscreen when walking on holiday (and I’ve been to Costa Rica, Spain, Italy, the South Pacific, Australia and New Zealand since being diagnosed! All fairly hot places) and also wear a hat and cream on my face and hands. I do think that it is good to get some sun on my arms and face towards the end of the afternoon as i really don’t think that anything I do now is going to have any influence over whether my melanoma progresses or I get another one- the damage was unfortunately already done in my childhood and early adulthood when the maximum sunscreen I used was factor 6 and that was considered high!
I would add I have very, very few moles so I can understand someone younger with a lot of moles that are hard to keep track of being extra cautious in the sun.
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