A Really Boring Update

It's hard to believe that it has been since November that I have posted anything in my blog.   I guess its an indication of two things.  One I am extremely busy these days and two my life is really going well.   This month makes one year cancer free and I am incredibly grateful.   I have had three scans in the last year and all of them have come back clear.   Honestly I feel the best I have felt in a long time and the localized occurrences of melanoma that I couldn't seem to stop last year were finally halted by the radiation treatments.   I can still remember sitting in Dr. Baders office and him telling me with all the confidence in the world that he could help me and he was very confident that radiation would be effective.  I hoped he as right and he was.  I was just thinking that its kind of sad that if all goes well I will never see him again.   I will definitely drop him and his staff a thank you card this month and drop off some bagels or something the next time I am at providence for an appointment. 

Thanks to everybody who has supported me this difficult year.   I couldn't have gotten through this without you.   Unfortunately I also had to say goodbye to a new friend this weekend.  Dan is in the middle of the picture below.   It was our one and only time meeting in person the day that picture was taken but he made an impression on me.   Dan was called home on Easter Sunday and his celebration of life service was this last weekend.   Dan was a great guy and he never gave up and I will always remember his smile and his attitude.  The week before he passed we were texting back and forth about going skiing together next winter after he completed a new trial drug.   Well that day will have to wait .   Rest in peace my friend.  Melanoma is not just skin cancer.   Please pay attention to your skin.  See a dermatologist annually for a skin check and use some common sense while out in the sun.  I spend more time in the sun now than before I was diagnosed with skin cancer but I am much smarter about it now. 

Paul

Moments In Time

I took this picture as soon as we arrived in Homer Alaska as kind of an afterthought.   It was later that evening when I was looking at my first days pictures that I realized what a great picture it was.   That is my son and my older daughter.  Life has taken them away from each other as it often does to people.   I thought I was going to Alaska to catch fish and visit my son.   We did do that but I think more importantly I was able to reunite these two for a few days and for a few days it was like they were 5 and six again.  In hindsight I believe that was the purpose of my trip.  When I saw that picture the first thought that raced through my mind was mission accomplished.   We had a great time and Alaska is so beautiful.   We caught lots of fish and had some good food but nothing can replace that moment. 

3 Years Ago.......

Three years ago this month I was diagnosed with cancer.   Soon there after a well meaning Dr. told me that I most likely had less than 12 months to live.   Well, I solicited Mr. Johnny Cash to help me pass a special message along to him, people who wrote me off for dead, and to cancer itself.   I think that picture pretty much sums up my feelings.

Yesterday I received the news that my latest scans show no evidence of disease, or NED as we like to say.   My latest battle with melanoma started last September when I noticed lumps appearing in the same area I had my primary tumor in 2010.  I had several surgeries but it kept coming back.  In the middle of all of this I had the idea to move across the country to Washington State.   Soon after moving I noticed another lump and went to see my new oncologist.  By the time I saw him one lump had become three and he sent me to a new surgeon.  By time I could get in to see him three lumps had become seven.  My surgeon told me that it was spreading so fast that surgery by itself was futile.  There was only so much they could cut out of me.   So off to see the radiation oncologist and soon after surgery I started radiation treatments.   My old oncologist was anti radiation so if I had never moved here I would most likely never have received this treatment.   Time will tell but for now at least this has been successful in stopping the spread of melanoma.  

 My summer got off to a rough start with radiation treatments in May and dealing with the aftermath of that for much of May and part of June.   It wasn't much fun but I know people who are going down much rougher roads than I so I wont complain.    By late June I was pretty much healed up from the burns and getting back to normal.   The fatigue hung on a little longer but all and all it was fairly manageable for the most part.  

I continue to settle into my new home here in Washington State and loving the weather.  Summers here are spectacular and I have been enjoying the great outdoors as much as possible.   Between recovering from the radiation treatments and a knee injury I have been slowed some but I have stayed as active as possible.   There are an endless numbers of great hikes to do here, camping galore, kayaking, ....  If you can't tell I love living here.   This summer my daughters and grand daughter came out to visit which was by far the highlight of my summer.  I didn't get to spend as much time with them as I wanted but I enjoyed the time we had.  My parents are visiting soon and in October I have a trip penciled in to go and see my son and his girlfriend in Alaska so I have plenty to look forward to this fall.   

As I bask in my good news my thoughts are with many who are dealing with less than favorable news.  Some of my fellow warriors bodies are just giving out against all the treatments and procedures.   I pray that god willing they get their second wind and are able to fight back.  If not, I still believe they will get their miracle.  They get to go to heaven.  A good friend from high school is just entering this cyclone with his wife recently being diagnosed, and some really close family friends (I consider them family) are dealing with the beast again.  My friend Rich had to say goodbye to his four legged chemo buddy Jordan.  Dogs are the best therapist.  I know how much my dog help me while doing treatments and surgeries and I don't look forward to the day I have to say goodbye.  I get how hard this is for him.  There is also a lot of great news as many of my friends are also still NED and living life to the fullest.  One is walking down the aisle next month with her sweetheart, one just refuses to stop believing, one continues to give me spiritual clarity in times of need, and another continues to wander around his own hotel keeping everything in order and keeping us entertained.   Some impress me with their mental and physical toughness to complete treatments I couldn't take, and others continue to answer the bell and come out swinging no matter what cancer throws at them.  You all inspire me. 

My blog doesn't get a lot of visitors, but many who do are fellow melanoma warriors.  I am going to enter the lottery to try and get a team for this event next year.  Click on the link below.  Can you imagine, a team of 12 melanoma survivors running a nearly 200 mile relay over 30 hours?   Check out this trailer and if this gets your blood pumping stay tuned.   Hopefully more news to come on this. 

Paul

Melanoma Black Monday

 
Getting ready for a new work week can be stressful.  The weekend comes to and end and work starts to creep back in to your mind.   It can be stressful.  I understand and want to help you alleviate some stress.  I want to help you get dressed on Monday morning.  Open your closet, find something black, put it on.  Its that simple.  Black matches everything as I understand it.   Seriously, here are some reasons why you should wear black on Monday and help raise awareness about melanoma. 

1.       Melanoma kills more young women below the age of 29 that any other form of cancer and is second to only to breast cancer in women up to the age of 39

2.       Melanoma rates among teens and people in their early 20’s are increasing at what some dermatologist are calling epidemic rates. 

3.       There is no cure for melanoma.    Prevention is the only way to beat this disease.  

4.       Melanoma is not just skin cancer.   You cannot just cut it out and move on.  This is a common misconception about skin cancer.   Melanoma is not skin cancer.  It spreads to your internal organs and is very aggressive. 

5.       The 5 year survival rate for stage 4 melanoma patients is about 10%.  Please see point 4 above. 

6.       Black is slimming and lets me honest, most of us can use this help

 

 Use common sense while outdoors.   We sun protective clothing, wear sunscreen, and please stay out of the tanning beds.  Using tanning beds even just a handful to times can greatly increase your risk of being diagnosed with melanoma. 

I have been battling this disease since August of 2010 and have endured 10 surgeries, 5 months of chemo therapy, and next week get the joy of starting radiation therapy.   To see that over 6,000 people have accepted the Melanoma Black Monday invite on Facebook gives me hope that we are making progress on the awareness front.   Raising awareness about this disease has been so important to me and my friends who are also battling it.   Finally it feels like we are making some progress. 

If you are wearing black on Monday thank you so much.  It doesn’t matter if you go full Johnny Cash like me or just wear a small black ribbon.  It’s the thought that counts and it means so much to me and others battling melanoma    I am heading out to hike Dog Mountain today.  Gotta get my fun in before starting radiation next week.   I don't really know what to expect.  I have heard everything from I wont have any side effect to I wont have the energy to get out of bed after three weeks.  Also there still is time to support me in my efforts to raise money for AIM at Melanoma by clicking the link below.

My AIM Portland walk page.

 

 

Aim At Melanoma Walk-Portland

On May 11th  I will be participating in an event to raise money for AIM At Melanoma .   Please consider making a donation to this great organization that has been so helpful to me during this difficult time.  AIM has been a tremendous resource for me and has been a great source of information on melanoma.  When I was first diagnosed it was far and away the most helpful resource I found.  I have used their call or e-mail a nurse program.  I use them to keep up to date on the latest treatments and trials for melanoma.   When I wanted to get involved in trying to help get legislation passed in Missouri to try and limit access to tanning beds for minors they encouraged me and helped me prepare to testify before both the House and Senate in Jefferson City.  Recently when I moved half way across the country I didn't have to worry about finding a new Dr.   Aim has a database of melanoma specialists and I am now receiving the best healthcare possible.  AIM also provided a forum for me to connect with other people battling this disease which has been so helpful to me.   Thank you all for your support and I really look forward to meeting some of you on May 11th in Portland.


Paul Hummel's Fundraising Page


I had to add this picture I took this last weekend.  I really do love living in the Northwest.

Update From The Pacific Northwest.

Well it’s been a pretty wild ride since I last updated my blog with any news.   The move to Washington has gone great and I absolutely love living here.  I have really enjoyed my time on Mt. Hood this winter.   I am not a great skier by any stretch but I think I have gotten much better this winter.  As the weather gets warmer I look forward to exploring the area on my bike and getting my running shoes back on and hitting the road again.  Unfortunately melanoma has decided to make another appearance in my life so I am in a bit of a holding pattern.   To make a long story short I keep having reoccurrences around my original site and once again have had to have surgery to have them removed.    With the move of course I have all new doctors and they have a different philosophy on how to approach my treatment.  My new surgeon alarmed me when I met with him and he told me that he really doesn’t think I am a surgical candidate any longer.   His opinion is that they can’t keep cutting melanoma out of me.   It grows back as fast as they cut it out and without some sort of alternate response he called surgery futile.   I actually like direct and to the point doctors but I was really alarmed after meeting with him.   What he said made sense but hearing it was a little scary.   In the end my surgeon and oncologist felt that the best solution for me was to start radiation treatments as soon as possible after surgery in hopes that it will prevent it from coming back.   I was actually relieved to hear that we were trying something different.   Finding suspicious lumps and nodules every few months is stressful and I know like playing Russian roulette.  I have been very fortunate that it has never spread beyond my original site but it’s just a matter of time if we can’t stop it from coming back like it is.   This time I ended up having 8 small tumors removed and I assume they are all going to test positive for melanoma.    The other option being considered was to start Zelboraf but I really wasn’t that excited about going that route.   Don’t get me wrong, if it had been their recommendation I would have but after battling interferon I really wasn’t that excited about doing chemo again.   I see it in my future but am not that excited to do it again.   I ended up having surgery this last week on Thursday and start radiation on May 7^th.   Surgery went really well and I feel pretty good for being just two days post op.    The biggest issue I had was how I was going to be back and forth to the hospital considering they wouldn’t let me drive myself home.   I ended up finding a way to make it work and was back at work the next day.   I really don’t know what to expect from radiation treatments but can’t imagine they are worse than chemo.   I just hope they don’t zap all my energy.   I am closing on my new house May 20^th and am really looking forward to getting out of my apartment.   My house back in Kansas City sold so my stuff is all on its way out.  I think getting out of the apartment with all the rental furniture and into a house with my own stuff will finally make me feel settled.  I will update as I get started on radiation to let everybody know how it is going.   I am hoping for a great summer and looking forward to these beautiful Pacific Northwest summers I keep hearing about.

 

 The best part of getting to go back to Kansas City and close on my house when I did was I got to be there for my grand daughters 6th birthday party.   My daughter was good enough to let me crash in her guest room while I was there and we had a great visit.   Cancer affects the entire family and having to share bad news with my kids, siblings, parents and friends is the hardest part.   Thanks you all for you text, email, and phone messages this week.  I may be far away from you all but I never felt alone this week as I was preparing for another surgery.   Your unconditional love and support means everything to me.   Every day is a gift.  
 

Discovering The Sea Shell

 

 

 

Inspiration can come from surprising places sometimes.   I stumbled upon this blog last week when somebody I follow on Twitter retweeted it.   I find it interesting to read and this weekend I keep  reading and rereading this particular post.  I find this poem very interesting and it really makes me think.   It reminded me of my freshman year in college when one of my professors would sit with me and help me while I butchered some classic poetry.   He really opened up a new world for me.  I tweeted to the author of the blog this am after posted this picture.  Last week was my turn to choke down the CT contrast dye.   Click on the link below to find the blog.

http://montalvod.tumblr.com/post/46502566193/discovering-the-sea-shell