A story from the olden days.

Anybody reading this, I would just like to say that all of my life, I have been a bit of a retarded clown so just imagine some idiot with a red nose and a horn jumping around writing this and bear with me. I am just posting this to hopefully pass on the good news, inspiration, hope to somebody else, some people might be entertained and some might shake their head and say here we go again with this idiot.  Very happy to be above ground and over 40.  Now I can say things like "In my day, we didn't have all of the fancy schmancy immunomodulators and targeted molecular treatments like they do now".  I have attached a patnet of my treatments just to put it in perspective-back in those days I wasn't the only one who went through this much misery- Charlie S is a perfect example.  Everybody was miserable in those days, but we were all in it together, we ate dirt and we were greatful.  Lance Armstrong was the hero, men were men, and sheep were scared.  I thought I was a goner when I first got mets to the brain.  My license plate at the time was 1 lung which was pretty catchy I guess on account of it getting me out of a bunch of speeding tickets.   I had already had 2 lung cuts- the second one took the whole left side.  In and out of that, I got some pretty miserable scriptions called Biochemo and IL2 I think .  But the lung removal took a lot out of me, and then there was more to come.  The whole time, my wife propped me up like a scarecrow and the crows were dropping them terds all over me-she'd clean me off and put me back out in the fields again.  Then into the brain I tell ya.  Not good into the brain, but life is hard so they zapped me with a crown bolted into my head, cut me and and I still got up-6 more times.  Each time a little lower IQ then the next. couldn't feel ma left leg after #3 and needed a cane.  Eventually I was having the fits, lost ma job, and was on the Dilantin, that had me seein purty colors and dizzy so they changed me to some new scriptions which eventually worked.  In the meantime I also had the temodar and gave maself injections.  This all happened and when they finally got rid of the tumors, my last 2 surgeries were to get rid of the radiation dirt.  We lost plenty of good ones in those days too.   Hate to think about it sometimes.  Don't know why God picked me to make it.  Inside the whole time I had the spirit telling me I might just make it, and I did-no fancy dancy pants treatments either. Last 2 surgeries were just the necrosis and dirt from the zappin.  I got ma life together went back to fixin cats and dogs.  Me and ma wife started a business (see here)

http://gsvmobile.com/

the day after my last brain surgery somebody called to make an appointment I answered the phone from my hospital bed(no lie) and told them that I wasn't going to be available for appointments but they waited.  By that point I came to realize that melanoma was more like a chronic disease that you manage and hope for the best and just keep on living.

Then we had a chitlin named Jedd-see here

(got to scroll down a ways)

https://www.fredhutch.org/en/news/hutch-magazine/2013-12/revolutionizing-solid-tumor-treatment.html

Best little critter you ever did see.  The little house we bought after the weddin(600sqft-literally we had to walk outside to the basement to do laundry) and brain cut #3 didn't hold up to the critter so we wrecked it to get him a proper bedroom (see here)

and had a new one delivered on the back of a truck.  See here.  

Life is good again, despite terrible odds I made it-even without the new treatments available.   If a clown like me made it, you can too, keep on pecking away at it.  As time goes on, the more I read, the most helpful things you can do for yourself are, keep active(you want to be able to get out of bed every day, crunches and pushup are helpful, and over time, melanoma can really wear you out., have a low stress level, eat in moderation a wide variety of food low fat/red meat hight in vegetables and grains-there is a new superfood everyyear-so don't pin your hopes on cocoa milk, keep your eyes open for new treatments, surround yourself with good doctors and a good support group ( I used to have my e-mails tuned to google alerts for melanoma survivors and new trials on a daily basis).

Despite change of treatments, the one thing I can say is that the people fighting this beast today are as tough as in the past.  Luckily there are more people sticking around.  I hope there will be even more going forward and the people on this board continue to improve the statistics to the point where unless you deny all treatments(or kill yourself) you have no excuse but to be alive.  I'm also happy to see that there are now a variety of less punishing new treatments in case it comes back-so I feel a little safer.  

I am also proud to say that I am now have had and beat the trifecta of skin cancers, Basal Cell, and Squamous Cell have been added to the list and crushed.  Oh and my derm biopsied a scalp thing which came back as ink (from my brain surgeries) I didn't even know they put them there but you learn a lot about yourself everyday.

There is life after(and during) melanoma treatment even stage IV with brain mets.  These days, I think about melanoma once in a while and tell my story to people (which even I cant even believe unless I feel the scars on my head)-only if they ask.  Meredith and I went on our first vacation in 4 years this March. I feel guilty wasting my oncologists time which could be more focused on treating actual sick people.  I now have old age problems like everybody else (had to get glasses for reading last year).  After 10 years you graduate-even from yearly checkups.  Jedd will turn 4 on May 5, and he is a true blessing. 

God Bless every last one of you and thanks for letting me live to post this.

John

I will leave you with this.

       I am

the patient

Initial Diagnosis

June

Initial Diagnosis (year)

2003

Current Stage

Stage 4

Depth of Primary

1.2cm ulcerated

Treatment History

6-20-03 Resection of right upper back primary 13mm in depth. Clarks level 4 Subsequently had wle and sentinel lymph node biopsies (neck and axilla) which were negative(actually diagnosed w/melanoma on 30th birthday!)

1-30-04 Adjuvant cancer vaccine trial at the University of Virginia (Mel 43/without GMCSF)

09-07-04 3 new left lung lesions ->VATS resection. Pathology + for melanoma

01-10-04 tadpoles on ice.

10-11-04 3 New tumors left Hilum, treated w/6 cycles of Biochemotherapy, Cisplatin, IL2, temozolamide, INF, and vinblastine. Initial Partial response had subsequent disease progression

11-14-05 HD IL2 therapy x 2 courses. tolerated 10,8,7 and 3 doses during each cycle

05-04-06 left pneumonectomy complete excision

07-01-06 GMCSF injections

08-20-06 Brain tumor nodule 7mm left side SRS surgery performed

09-15-06 Attended Kushi Institute and started Macrobiotic diet.

10-01-06 repeat MRI initial tumor increased in size w/hemorrhage 2nd tumor in right frontal area

11-01-06 craniotomy and removal of both tumors followed with adjuvant Temodar therapy 1st tumor dxed as radiatoin necrosis not recurrenc on path.

01-01-07 recurrance of right frontal tumor. Both tumors craniotomy re-explored and removed followed by adjuvant Temodar and radiation boost

10-01-07 new tumor in falx cerebri Tumor removed via craniotomy. SRS to surgical site to prevent recurrence 2 weeks post op.

2-25-08 Recurrence or radiation necrosis in area of falx cerebri surgery. Surgery scheduled for 3-11-08 removal. No new evidence of disease in CT chest Abd since left Pneumonectomy. (May of 2006)

3-11-08 Tumor removal. Confirmed as new tumor as per surgeon. Not radiation necrosis. Pathology pending.

3-20-08 Fit for radiation mask and boost. Further consult w/Radiation oncologist 3-11-08 mass was marginal miss recurrence due to SRS boost. Thats why Radiation boost decided ATT.

6-16-08 MRI of brain, CT of chest abd/pelvis equals ALL CLEAR/NED.

8-01-08 Severe headaches head/neck. MRI of Brain/neck shows NED.

9-22-08 MRI shows possible swelling @false cerebri? approx 2cm in diameter

9-29-08 Craniotomy #5 radiation necrosis!

11-10-08 collapsing episode/partial seizure put on dilantin 300mg/day. currently doing fine MRI equals all clear.

01-07-09 partial seizure MRI equals NED. increased dilantin to 400mg qd.

02-12-09 Feeling very lousy, blurry vision, colors changing when reading, nausea, ataxia. MRI equals no change. Dilantin levels elevated. Switch to Keppra.

6-01-09 Still Seizuring on Keppra(actually moreso). Epileptologist upped meds to 1500mg BID adding lamictal hopefully tapering Keppra

ALL SCANS CLEAR > 1 YEAR

8-06-09

On Keppra 1500 mg BID, + Lamictal 150mg BID, CT and MRI clear

11-05-09 1250 Keppra BID, Lamictal 200mg BID, MRI clear.

seizure free since July.

03-04-10 CT/MRI negative! No seizures since July!

06-17-10 MRI still clear driving privileges restored.

08-30-10 weakness on Lt side, MRI shows edema in area of rt frontal lesion.
09-02-10 craniotomy # 6, residual tissue noted on path, final results pending.

09-07-10 Manliness evaluation: Shooting Blanks/luckily have tadpoles on ice.

09-15-10 Path of brain tissue negative.

10-08-20 CT Chest Abd Pelvis Clear

1-6-2010 Brain MRI much improved.

5-5-2012 Jedd Andrew Gallagher born! no melanoma since 3-11-2008

Doctor

Jedd Wolchok

Treatment Center

Memorial Sloan Kettering Cancer Center