Interview with UV Skinz

I was recently contacted by UV Skinz blog writer, Kalisha, about doing an interview.  It is amazing, as always, to be able to spread awareness of melanoma with my story.

UV Skinz is a great company and if you haven't checked out their website, and blog, you really should!  They have a lot of great products, like hats, swim shirts (skinz) for kids, and adults, sunscreen and lotions and more!  The company was started by Rhonda Sparks in 2005.  Rhonda lost her husband Darren Lee Farwell to melanoma at the young age of 32.  She has a passion of educating and protecting children from the damage of UV rays.  You can see more of Rhonda and Darren's story on the UV Skinz blog webstie.

Thank you UV Skinz, especially Kalisha, for the great interview and in helping me use my story to educate against melanoma!

Thank you Dr. Johnson!

I received a phone call today from my new surgical oncologist Dr. Johnson, at the U of M.  He said they had finally received my biopsy slides today.  There were 64 slides total.  He said he had them  read them today. He didn't want me to wait any longer to find out the results.  He said that all 64 slides of my lymph node biopsies showed no melanoma.  I am VERY happy about that.  He then said that I am a stage 1b and that I have a great pathology report.  He went over the report with me and answered all of my questions.  He even told me that even though my results are all about the best they could be, I can have a scan if I want.  He is such a great doctor and even though I have no reason to return, I know that he is there if I need him.  That is what every doctor should be like.  If I had good care in the beginning, I could have avoided all of this confusion, and fear.  I would still be afraid, and always will be, of it returning, but I would have felt a little better knowing exactly what the pathology report meant in the first place.  I now only have to see a dermatologist every 6 months for a skin check up.  I am going to one that was head of the melanoma clinic at Henry Ford hospital for over 20 years.  She is awesome according to Dr. Johnson, and he said he thinks I will like her.  I hope so!!  I do trust him.  So, now I can say I am Stage 1B.  I will have to get used to it, but I like it.

UV Index

The UV Index provides a daily forecast of the expected intensity of ultraviolet (UV) radiation from the sun. I check the UV index in my area daily and have since I was diagnosed with melanoma last year.  I believe it is an important tool.  You still should be using sunscreen every time you plan on spending time outside.  Even on cloudy days, the UV index can be high and UV rays can still do damage to your skin.


Check and see if your state is listed at http://www.epa.gov/sunwise/statefacts.html
 There are facts about melanoma and skin cancer per state with a map county by county of melanoma rates.  My state is Michigan.  Michigan Deaths from Melanoma- About 248 people in Michigan die of melanoma every year.  Since 1975, the melanoma death rate has almost doubled. WOW.

Take precautions against becoming a statistic!  Don't be like me! Protect your skin and it will protect you!

What Am I????

While I was at the Relay for Life 3 days after I saw the U of M specialist,  I got a call from him.  It was a Saturday, and he was working.  He wanted to call me about the mole he had biopsied when I was in to see him.  He told me it was NOT melanoma!  Whew!  I was so happy and I thanked him for calling, especially on a Saturday.  He then said, he wanted to explain to me what he was saying about my stage.  He said that I AM a stage 1b, but because I was so upset he let it go, but he wanted me to know.  He said they are still waiting to get my original slides to re read them, but the pathology report showed a Breslow of 1.10mm, with less than 1 mitosis rate and no ulceration and all the things they do to stage were good.  He said that because of all of that, I am a stage 1b, not stage 2a.  It was so strange, and still is, because I have lived the last 14 years believing I am stage 2a.  He said this was good and that my survival rate is like 95%.  I was still confused, but thanked him.  I pulled the pathology report when I got home and I went over it very carefully.  I checked the staging guidelines for melanoma online and I became even more confused!  I am technically staged at pT2apNxpMx.  This translates into the following.  PT2a stands for the depth/thickness of the tumor, or Breslow.  The staging classifies anything over 1.0mm -2mm as a stage 2, if it is ulcerated.  Mine was not.  Therefore I am stage 1.  The mitosis rate was good, less than 1 and lymphocytic invasion was absent.  It IS considered a stage 1b.  Wow, I have been processing this for awhile and  I know I should be jumping for joy, but I am just stunned.  The U of M is also waiting for the slides from my original biopsy to reevaluate them.  I will hold off being happy about my stage until then.  Just to not get disappointed if they were wrong.  The dermatologist and the surgical oncologist told me I was stage 2a.  That is another reason I can be glad I fired them!  I sure have been through a lot of unnecessary crap because of the doctors I was seeing.  I just can't believe it.



The U of M actually called me today, to let me know that they still are trying to get my original biopsy slides, and that the cancer facility that has them, is not cooperating and won't release them.  I have signed 2 records release forms and there should not be any issue.  I told her that I would be happy to call them and get my slides if necessary.  She said she would let me know.  She just wanted me to know that they haven't forgotten about me.  Sometimes with patients, that is all we need to hear and know. 


So....I am now just waiting to find out what I am.  Waiting to see if I can celebrate being stage 1b and then try to get used to that, or if I am a totally different stage all together.  Waiting for results stinks.  I didn't really want to say anything until I knew, but it is taking so long.  If anyone is questioning their own stage and has their pathology report (if you don't have it, I highly recommend getting a copy of it!) you can go to the Melanoma Center's staging tool.  They will help you find out by asking you questions.  It told me I am a stage 1b too!  I pray this is true and  I will keep you all posted!

To Scan or Not to Scan? That is the Question!

So, I went to the U of M, (University of Michigan) a couple of  weeks ago for my long waiting, much anticipated, second opinion, and I came away with mixed emotions.  I guess I thought they would do what I wanted and not tell me I was wrong.  What do I want?  A scan to see if there is melanoma inside of me hiding out somewhere.  I was treated wonderfully from the minute I scheduled my appointment.  I loved it there and felt like they were going to help me and protect me, except for ONE thing.  I asked the doctor, who was a head doc of the melanoma clinic, how he feels about scans for a lowly Stage 2'er like me.  He said that he doesn't do them.  He asked me a bunch of questions, "do you have blurred vision?" "No ."  "Do you have pain in between your shoulder blades?"  "No."  " Do you have abdominal pain?"  "No." "Coughing up blood?"  "No."   I knew where this line of questioning was leading, and I did think about fibbing a little to get what I wanted, but I know that is not the way to do this.  He then said, "Well, your lymph nodes are not swollen,"  as he checked them in my groin and armpits, neck, and abdomen, " and you don't have any symptoms that would warrant a scan."  I pretty much quit listening for about a full minute.  I was very disappointed and kind of mad.  I was really hoping that they of ALL places, would be proactive and order a scan for me.  I couldn't believe it.  I felt like I had just wasted my time and money that I don't have to waste!  I tried listening to what he was saying and he was telling me all the reasons why they don't do them, "the insurance company...blah, blah...."  I kept nodding my head, half listening to him, getting madder by the second.  Then when he was done.  I said, "then why do they do scans on people who have stage 1 breast or stage 1 lung cancer?"  I know he knew I was mad.  I know he knew what I wanted.  He explained to me that even if they scanned me it will not pick up minute little cells.  I started explaining to him that I can't live in fear like this anymore and that I came here for help, to get a scan.  i know too many people that were given the all clear and are not here any longer.  I pleaded my case and I bawled my eyes out.  He was very sympathetic, and he said he understood why I was scared.  Then he told me that I was not a stage 2a, that I am a stage 1b.  Well, you can imagine how that made me feel!  I was angry at first, thinking he didn't know me at all!  So I defended myself and told him I AM stage 2a.  He said that based on my pathology report, I am actually a 1b because the tumor was only 1 mm.  I snapped and said, "It was not!  It was 1.10 mm and I was told I am stage 2a."  He dropped it.  He asked me if I wanted to speak to a psychiatrist ( I know that sounds bad, but he was really trying to help!)  and I agreed without hesitation that I should.  He was very nice, he did a through skin exam, the first one I have ever had!  My dermatologist acted weird when I asked for one after my diagnosis!  He gave me referrals to a good dermatologist in my area, since I was not going to go back to the one I was seeing.  He also said they would contact me about setting up a visit with the psychiatrist who specializes in cancer patients.  He then said they would remove the mole that was bothering me on my shoulder if I wanted him to and I agreed.  He did it quickly and less painfully than ever.  He gave me a hug and told me if I really wanted to get a scan, he would order it.  I nodded and thanked him.  I didn't quite get what I wanted, but maybe there is an option after all.  I think it would be pretty hard to get this paid for by the insurance, so I have decided to just watch and wait.  If I have any of the symptoms, I will not hesitate to call him and get a scan.  Until then, I will try to accept that I don't need one.  That might be easier said than done.  But, I am willing to try.  Wish me luck!

Find out the UV Index in your Area- Don't look like a Lobster!

UV Index is 10 here in Michigan today! That means it is very high and you should take extra precautions to avoid skin damage, like melanoma which is deadly! Check and see what the UV index is where you are! http://www.epa.gov/sunwise/uvindex.html

I love this UV index because it is so easy to use and you can even create a widget for your blog!  They also have some great information about protecting yourself from skin cancer, and melanoma!

If you are on the beach, remember sand and water reflect the sun and can DOUBLE exposure to the UV rays!  Wear hats, sunglasses and protective clothing.  Seek shade!  And remember, SUNSCREEN IS NOT WATERPROOF!!! Reapply every 2 hours and use at least a shot glass size amount on all exposed areas!  SPF should be at least 30. 

You can still have fun, but you won't look like a lobster doing it!

Still Learning

I had a function to go to recently that my family would be at, in particular my cousins who I have known all my life and wanted to be like when I grew up.  I wanted to be tan like them.  I decided that my legs were too white, so I used some self tanner that I had gotten for my daughter to use. It looked very natural on her and didn't have the odor of some I had used in the past winters, years ago that turned me off from them and kept me tanning.  I put it on and was hoping that it would give me a little color by that afternoon.  I also wore capri's even though I originally thought I would wear something short enough to show off my scar.  In the hopes that they would see it and stop tanning maybe...but instead I decided not to show off my scar and to use the self tanner.  When I got there, I saw that one of my cousin's was actually not tan.  I was pretty sure that it was not because of me.  She probably just hasn't had time to tan putting the function together.  The other cousin, (they are sisters)  was so tan it made me sick to my stomach.  I haven't seen her in awhile and she has moved to Arizona in the last few years.  She was pretty much always tan ever since I can remember, but she was SO dark.  I have never seen anyone that dark in person.  We are talking Tan Mom dark.  Her chest was literally brown. I couldn't help but feel like I don't matter to her as much as she matters to me.  She gave me a long hug and told me that she sees everything I post on Facebook about tanning and that she is very proud of me.  She said she hasn't been tanning all of last year, but went tubing with friends and wanted to show all of us from Michigan that she lives in Arizona, so she got tan before she got here.  I didn't know what to say to her.  I really didn't say anything other than thank you.  I didn't want to get upset and I didn't feel like lecturing her.  I know she wouldn't stop even if I did.  I was a tanning addict once, and I would still be if I didn't get diagnosed with melanoma and basal cell carcinoma.  So, I just decided to let it go.  I can't MAKE people change.  She even said herself that she sees everything I post.

I wish I had not used the self tanner.

 I wish I had worn the shorter skirt to show off my scar.

  I wish that I didn't have to feel so self conscious about how I look all the time.

 Then I started questioning why I didn't show off my scar or go pale or say something to her!  I guess I don't know the answer to all of that.  I might have not wanted to draw obvious attention to myself, or maybe I wanted to fit in and be accepted.  I regretted using the self tanner later when the smell mixed with the sweat smelled horrible!  I was so disappointed in myself.  I promise myself that from here on out, I will NEVER be ashamed of myself.  I will wear my scars with pride.  I will not try to change myself to make others happy and I will not hide the Melanoma Me to make others comfortable.  I am who I am, and I am still learning.  I learned a lot that day.  I have never loved myself.  I always want to change something to look better.  I am still learning to love myself.  I will keep learning to accept myself and to embrace myself, Melanoma Me and all!

Melanoma Surgery and Beyond Pics

The original mole taken 2-19-11  = Stage 2a melanoma

Bandages on my leg after my wide excision biopsy.  The blue dye is from the sentinel lymph node biopsy.  They inject blue dye around the site of the original melanoma and watch where it goes and if any lymph nodes "light up", they remove them to check for melanoma cells.

This the first picture after the bandages were removed post op day 4, I was shocked at how big the scar was, 22 stitches.

They went so deep.  I was not told how much they would take.

the lymph node biopsy site post op day 4.  Bruising and it was painful!

the groin biopsy healing

 Post op after the stitches were out finally!  It looked infected to me, but the surgeon thought it looked good.

My scar one year after I took the picture of the mole.  It is healing nicely.

 Groin biopsy site after some healing!

There is still an indentation, but it is better than it was.

The biopsy of the groin post op 4-27-11

                       

My leg post op-- This is after my first post op appointment, he took out half the stitches and said it was too tight to remove them all.  It looked infected to me, but he didn't think so.

At the dermatologist getting a mole removed....

                                      

Reaction to either the tape or the Lidocaine, removal of basal cell on the top and another mole on the bottom. 

My leg a few months after surgery...looking better?

The basal cell stitch on the top and other mole biopsy on the bottom.  Not melanoma!!

This is a mattress stitch and was very hard not to get caught on everything!  This became infected and hurt like crazy!!

Pus from the scar, dermatologist said it was MRSA!

Relay for Life~ Raising Melanoma Awareness

Maybe someday there will come a day that I don't think about melanoma.  In the meantime, I am going to keep spreading awareness, even if it takes me out of my comfort zone.  I was asked to speak at the Relay for Life today in town.  I didn't hesitate to say yes, but then I was thinking, "what are you doing!  You can't do this!"  I DID do it!  I didn't faint, puke or embarass myself at all!  I wrote a great speech and threw a lot of melanoma facts in there (since I had the chance!) and people came up to me all day telling me how wonderful my speech was!  Chalk up another victory for us warriors!

Relay for Life was amazing.  It was more than I expected.  I was hesitate to do it, but I am so glad I did.  I not only had an amazing opportunity to speak and share my story (as well as awareness for our little recognized melanoma), I also got to carry the banner and walk the survivor lap with my Mom who is a 6 year thyroid cancer survivor! I got to fell blessed once again for all the support of my amazing family.  My sister and nieces made a ton of awareness ribbons and my Mom and sister got T-shirts for us to wear.  My daughter and her boyfriend were amazing to spend their one free day this week with me for this.  They were so helpful and upbeat.  My fiance videotaped my speech and must have told me how proud he was a thousand times.  He is truly wonderful, not just today, but every day.

If the day wasn't going good enough as it was, I received a call from my new oncologist who told me that the mole I had biopsied was clear!  No stinking melanoma!  Now I just wait for the re-read on my slides, but he is pretty confident that they are going to be clear.  What a blessing!

I also saw a lot of people putting on sunscreen, seeking shade and wearing hats which made me SO happy!!  I did see a red-haired, young girl, putting on suntan OIL and sitting in the sun.  I have learned in the last year that you can't change people.  We just talked loudly about melanoma, and she finally went into her tent out of the sun and just looked at us.  I think she got the hint.  As my brother in law said, "You can't fix stupid."  Apparently not, since when we left, there was a guy with his shirt off laying in the grass suntanning.  I tried not to let it get to me, since I know I can't make people stop.  All I can do is give them the information and move on.  I can't get upset and downright depressed because not everyone listens to what I have to say.  I have learned not to take it personally if they still choose to fry themselves outdoors or indoors.  I can't fix stupid.  And in my opinion if you tan, knowing what I have told you, you are stupid.  I have seen too many mothers that have had to bury their children because of melanoma.  No mother should have to bury there child.  EVER. 

Today was a good day and now I should probably try to get at least 8  hours of sleep, which I have not been able to do in the last month!

Love to all!

University of Michigan~GO BLUE!

After 13 months of being NED, and wondering if melanoma was lurking somewhere unseen inside of me, I am going to the University of Michigan Ann Arbor.  I am very excited about this appointment.  I will be seeing a melanoma specialist and they are going to re-read my original biopsy slides.  I was told 13 months ago that I didn't need a scan, or radiation, or chemo or anything for that matter.  I was only stage 2a.  They don't do anything unless you are over stage 2b in some places, or for most stage 3.  I have worried about so much since then.  Every ache or pain I wonder.  I have not seen a dermatologist in several months.  I will never go back to him.  I decided I needed someone that would actually take care of me and someone that specializes in melanoma.  I feel good about this decision.  It will feel good to have peace of mind.  I never saw a melanoma specialist, except when I asked too many questions of my surgical oncologist, he had me see him to basically tell me that there was NO reason to do any scans on someone like me.  There was no need according to him.  I have struggled with feeling like I should and that maybe I was being too paranoid about it and should just do what they said.  I just feel like I am slipping through the cracks.  I stopped going to the dermatologist for many reasons.  The guy was very educated, Harvard I think.  But he had NO social skills and NO bedside manner.  He was the one that told me I had melanoma.  He was nervously laughing while he told me.  I was not crying, because I had it in my mind already that it WAS melanoma.  I had done my research online and the pictures told me that it was not good.  (I learned a lot more online actually than I did from any of the doctors I paid to treat me!) I went to him for the basal cell carcinoma to be removed with a MOHS surgery a month after my melanoma surgery.  He didn't even say hi to me.  Just walked in and took a picture of the spot, and talked to his assistant.  I was already numbed up and ready for him.  Then he started cutting.  I just laid there.  It was not a pleasant experience.  The nurse was the one that came back to tell me it was all clear.  I saw him 3 more times for skin checks that I requested.  I never felt like he was really paying attention to me.  He just would pull out his camera, snap a picture and tell the nurse he wanted to remove something.  He never really even spoke to me. 

I think that too often, as patients, we accept what a doctor tells us to be true. We accept that they are too busy to treat us like a person.  We don't try to push them, we just accept what they say.  Doctor's are human beings and human beings make mistakes.  They might not mean to, but we all make mistakes.  I feel like I have to do this for peace of mind.  I have had a rough year full of wondering if I was falling through the cracks.  I am scared of the unknown, but I know that I can't play the ticking time bomb role any longer.  There is not anything pointing to melanoma being back.  I just feel like this is a good move and way overdue! 

Busy Spreading Awareness!

I have done 3 interviews this month for melanoma awareness!  I love telling my story in the hopes of preventing others from going through what I have.  I will post them as soon as they are available.  I hope to do much more. We have to keep going!  I have an exciting project in the works and I am very excited about it!  I will share more soon! 

Remember, even though May is over, spreading the word about melanoma is not!