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

 

 

 

 

My best tan ever wasn’t worth this



My best tan ever wasn’t worth this. 

Friday was surgery day for me again.   That was surgery #8 for those who are counting.    Hopefully next week when the pathology report comes back I get the news that the margins are all clear and I can put this chapter behind me.    It is scary for me to think that in two weeks I will be living in a new town and if I need more surgery it will either have to be with a new Dr or I will have to fly back to Kansas City to have it done.    Let’s hope it doesn’t become an issue.   I am excited to move to Vancouver and am really excited to start my new job there but I am not looking forward to having to find all new doctors.  I heard the statement “It’s just skin cancer” again last week. Well, “Just skin cancer” killed 24 people yesterday, and will kill 24 more today.   One of the lives taken Saturday was a young woman whose mother shared her brave and courageous fight with us.   I can only hope for an ounce of her courage and fight.   RIP Jillian, you have inspired me and I am sure many others.   Thank you Susan for sharing her journey with us.   You have done so much to raise awareness about this horrible disease.  

http://jilliansjourneywithmelanoma.blogspot.com/

Protect your skin, stay out of tanning beds, and see a dermatologist regularly.  

Changes

As if my life wasn’t crazy enough I am relocating to Vancouver, WA in January of 2013.   It’s hard to imagine moving across the country and I will miss my daughter and granddaughter more than I care to think about.   I am also terrified at the thought of continuing my journey with cancer without my trusted medical team.   I had a real eye opener this week when I was looking for an apartment to rent while waiting for my house to sell.  I toured 6 different apartment complexes around Vancouver.  Each and every one of them had free, unsupervised and unlimited access to tanning beds.   It’s been 30 years since I have lived in an apartment so I am wondering if this is normal for apartments?  Is this something unique to the NW of the country due to the number of cloudy days?   Not sure but it was stunning to see.  I am here for a few more days before heading back to Kansas City for the holidays.   My next trip out here I won’t be leaving.   It is still hard to imagine.   I have done some exploring around Portland and plan to do a lot more.   I think I will like Portland.  I drove out to see the ocean today but I am not sure why.  I walked on the beach some but it was cold and rainy.   It was nice to hear the sound of the surf again.  I have always found the sound of the surf very relaxing.   I also was excited to see that there is an AIM event in Portland in May.  Hopefully I can get involved.  Crazy times.

Paul

Lucky #7

Well today I underwent my seventh surgery since this journey started back in September 2010 and I am hoping it is my lucky number. When half the people at the local surgery center know your name it’s not a good sign. This was a follow up to my surgery a couple of weeks ago. As bothered as I am about the surgery I am much more bothered that the medical bills from two additional surgeries these last three weeks will prevent me from making the trip to Charlotte to walk with my molemates at the AIM event there this weekend. I know overall my problems are small and I am blessed but I was really looking forward to meeting everybody. Maybe next year.

 

Pushing The Reset Button

I think it is safe to say that every melanoma patient’s worse nightmare is to learn that they have had a reoccurrence of melanoma.  We have regular scans and do self exams hoping we never find anything.   Waiting for something that we hope never happens to happen.  Well this month my waiting came to an end.   After a long month of tests and biopsies I had a lesion removed yesterday from my upper left chest wall that tested positive for melanoma.   The surgery was actually the easy part of my last month.   The Dr visits, the scan, the biopsy, and the worse part of course all the waiting.  In the end I am very lucky.  My PET scan came out clear but the needle biopsy on the spot in questions was positive for melanoma.   The bottom line to me is that although this is not good news the fact that my PET was clear other than the known bad area is very good news and my cancer free clock starts over.  After 23 months cancer free I have to push the reset button.  Today I am cancer free one day and to steal a line from Rev. Carol I am grateful.   The positive out of all of this is that it affirms in a way that I am being vigilant and it works.   I noticed a suspicious bump on my chest went to my medical team and got it out before it could spread.   The million dollar question of course is where these cells came from.  It was just below my original site so I am guessing it goes back to my original melanoma.   Much more discussion to come between me and my oncologist on this subject to come.    

It has been so long since I have written anything.   This summer was a blur.  I can’t think of much that I wanted to get done this summer that I didn’t do.   I had a great trip to Alaska to spend some time with my son.  My daughters and I had a blast running 5k races this summer.  I forget how many we did exactly but it was several.  My times were horrible and I never came close to my goal of a getting in good enough shape to run a 10k but I am really enjoying running again regularly for the first time since my early 20’s.  I hope to keep it up all winter.  It’s killing me this weekend to not be able to run because of my latest surgery.  My running shoes are calling to me. 

Many of you know that the older of my two sisters was diagnosed with cervical cancer this fall.   Her experience has given me a different perspective on cancer.   It really makes me appreciate the caregivers in my life.   It is so hard to see somebody you love go through this battle.  The good news is that she is fighting back and doing great.  She finished her chemo a couple of weeks ago and has her last internal radiation treatment next week.   It has been really hard on her but she is fighting like hell and on her way back.  We were talking about the menu for Thanksgiving here in a few weeks so I know she is feeling better.   Two weeks ago she didn’t want to talk about food.  She and I are hanging out together this weekend taking care of each other.   Going to her chemo treatments was an interesting experience. Just walking in there and seeing those chairs and the bags of fluids brought back memories of being a patient there myself   I got that metallic interferon taste in my mouth as soon as I walked in that room.  i am glad I could go with her and give her some support but am glad it is over with.