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marknyc's picture
marknyc
Posts: 6
Joined: May 2013

Hi all,

Just wanted to introduce myself.

My anal cancer first appeared in August of 2007, and I've had three mets since then - one in each lung and one in the kidney.  You can read my story in detail here:

http://www.thebody.com/content/69290/personal-perspective--the-good-patient-fighting-an.html

Done three rounds of chemo, and no new cancer since May of 2011.

I'm trying to prepare for my next met (which I'm sure will appear at some point), and looking for any trials of new treatments.

Problem is, I'm NED right now, so I guess I have to wait until another met appears before I even see if I would qualify for a  trial.

Any thoughts welcome!

Mark

mp327's picture
mp327
Posts: 2980
Joined: Jan 2010

Thanks for posting the link to your story.  Wow, you certainly have been through a lot.  I welcome you here and hope you'll find this a very supportive group.

LaCh
Posts: 514
Joined: Dec 2012

Thanks for sharing your story. For sure it reminds one of the ways in which each of us sees things through a different lens.  Your experience with HIV followed by metastatic anal cancer certainly gives one pause; it's a lot to carry... but as far as facing it alone and being one's own advocate, yes, we're each our own advocate and some of us do face it alone and come out just fine.  I also had to make my own appointments, get myself to and from those appointments, slog through the stupidity of the insurance companies, take myself to tests and treatments, surgeries for ports in and ports out, all of that, while living alone in a 5th floor walkup with a dog who had to be walked, and in so much pain that I couldn't see straight. But I'm used to facing things alone and never really gave it much thought. I suppose it's not ideal--well, no, of course it isn't ideal--but I got through it. You just put one foot in front of the other and do what you have to do.  I mean... there are the only two options. Do something or do nothing, and if doing something requires doing it alone, you do it alone.  That said, I'm glad that you had a loving, supportive boyfriend and DIDN'T have to face it alone.  

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry that you had to go through all this alone. You are very strong! I hope you are doing well these days. Have you taken your dog to Central Park yet? The weather is getting nice, finally. Spring is here! After the winter that you had, I hope you enjoy it!

LaCh
Posts: 514
Joined: Dec 2012

Hey Marynb,

I don't even think about it anymore, I did whatever I needed to do and now it's in the past.  Done.  I'm doing ok, not fabulously fantastically great but not too shabby either so I can't complain.  Yeah, me and my dog went to Central Park two weeks ago and it was just....  medicinal. Magical. Indescribably beautiful.  

The thing about the winter, the treatments and the whole cancer thing is that I hardly remember it.  The entire experience is a very dim memory, more dim than what you'd expect something that happened a few short months ago would be. I realized that if I hadn't told people, verbally or in writing, about having to scream with a towel over my mouth every time I went to the bathroom, I probably wouldn't remember that either. I remember saying it. I hardly remember experiencing it.  Kind of weird, I suppose, but also good. I mean, it's not something I especially need to remember.  And you... how are YOU doing????

Marynb
Posts: 1134
Joined: Aug 2012

Yes, it is funny how we forget pain. If we had a better memory for it, the human race would come to an end because child birth is no day at the park!

I am doing ok, thanks. I would like to make cancer a distant memory! The next two weeks I will be filled with more tests. I guess I am even going to have to have more scans. Not making me happy, but I will do whatever I have to do to get well again!

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

I could write your words myself because that's how I remember things being too. My med onc asked me to speak to another patient that was experiencing an AC diagnosis and when I became telling her about my experience, it was as if I was telling someone else's story..like I was there watching instead of it really being me. I chalked it  up to my own mind protecting me from the pain and the good Lord helping me forget it.

Take care of yourself and I pray you continue to improve.

 

Gigi

eihtak
Posts: 857
Joined: Oct 2011

Mark, I'm glad you have found us....( well not really, but glad we're all here to help each other )  You have quite a story, thanks for sharing. We all have things to learn from each others experience and never know what one comment may make it or break it for another. Ironic that for you right now NED is referred to as a problem. Lets hope maybe that is a problem for many many years!

marknyc's picture
marknyc
Posts: 6
Joined: May 2013

...for the supportive comments.
I know what you mean, LaCh - I went through hell in the 80s when I was first diagonsed with HIV and sarcoidosis, and faced all that alone.  I applaud you for getting through AC treatment without someone there to help - I can't imagine how tough it was.

Happily, other than surgery to remove my kidney tumor last January, and stubborn neuropathy from six months of Taxol, that last year and a half have been good - for both my boyfriend and me.

One problem with having someone in your life is that you have to worry about them as well as yourself, so it kinda lessens and adds stress at the same time.  Does that make sense?

Here's hoping we're all around to complain about the health care system for a long time!

Mark

Marynb
Posts: 1134
Joined: Aug 2012

Thank you for sharing your story. I am sorry that you have dealt with so very much. I am glad that you have a loving partner to support you. I do understand that you worry about him as well as yourself. I am a single mother and I worry about leaving my daughter. I am starting to become acutely aware that I need to be a better advocate for myself. I was diagnosed with a second rare cancer shortly after treatment for anal cancer. It was not a met, but an unrelated cancer. Until recently I hadn't even read my own medical reports. When I did, I was horrified. I am now in the process of learning as much as I can about each cancer.

What I don't understand is why so many doctors misdiagnose anal cancer. So many of us were told we had hemmorhoids. This cancer should not be hard to spot! I wish there was a way to get more public awareness and education about anal cancer.

I rely heavily on prayer and I will remember you in my prayers. I hope that the cancer is gone from your body!

LaCh
Posts: 514
Joined: Dec 2012

Hey Mark,

The treatments weren't hard for me because I went through them alone. They were just hard, and that was only because I had doubts about what I was doing, whether it was the right thing or the wrong, and because they were painful toward the end from the burns inside and out and I was sick towards the end.  A distant relative (figuratively and geographically) said that they felt badly that I was doing it alone, and a friend of mine in Spain said the same thing. I told both of them the following: There's absolutely nothing you can do for me by being with me. There's no getting away from the fact that I'm going through this, it's me, nobody else, and whether I have one person with me or 100 people, that was a fact that wasn't going to change. I don't need or really want "hand holding," not because there's anything wrong with it, I simply don't respond to it. It doesn't help me. But insofar as your comment about having to worry about yourself AND your boyfriend, I absolutely completely understand that, which was why I was very content and even appreciative and glad that there was no one with me. I had to worry about looking after MY issues, nobody else's, not physical, mental, emotional, nothing.  It was very advantageous to go through this alone. Also, it got to the point where I was screaming with a towel over my mouth every time I went to the bathroom so my neighbors wouldn't hear me. Had there been someone with me here, no towel would have prevented them from hearing me and I just didn't want that. I'm a private and solitary person by nature; it's just how I am and just because I had a situaiton...or a Situation, in capital letters...that didn't change. So for people who want someone at their side, I hope that they can have that. For people like me who don't, I hope that they can have that.  Speaking of HIV and dealing with that, years ago I was a volunteer with the Gay Men's Health Crisis during which I was paired with one person to be his "buddy" which means that you basically help with whatever needs arise.  It was very rewarding for me, very gratifying to be that person but at the end of the day, I went home and he was on his own, and even HE appreciated that, sick though he was.  Being alone doesn't have to be tragic or pitiable, it needn't engender sympathy or sadness. Some people genuinely prefer solitude, space, autonomy and independence. And although I always try to be cognizant of the needs of others, when I'm in a situation that demands all my mental and physical resources, the last thing I want to do is have to think about someone else's needs, as you said. The other person may say, "Don't worry about me," but that's not a realistic expectation.  I wasn't sorry in the least that I went through it alone. I just would have preferred not to have gone through it at all. That said, it's in the past. Done. Finished. It's not my present reality, it's my concluded past.  As far as I know, anyway, and if it turns out that it's not as done as I think, I'll just deal with whatever needs to be dealt with, and do what needs to be done.  Alone.  As for complaining about the Health Care System, and for me, Western Medicine and doctors who practice it with the "Let's just toss them a pill, supress the symptoms and call it a cure," mentality, I'm trying not to indulge in the railing against it all anymore. It doesn't change anything but takes a toll on me.  It's frustrating beyond description so I try to just walk away. After a while, the complaining itself becomes just another source of frustration.  It leads to nothing good, nothing productive (for me) but the opposite, so I just try to avoid any contact with The System, it's practitioners and the entire thing.  That's the plan, anyway.  Hang in... I assume that you're in NYC from your name... Me too.  Central Park was beautiful yesterday, a little crowded but it's spring and that's normal, it's a bit too wet today, but supposed to be nice again tomorrow.  Enjoy the weekend.

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

Being a phycician does not make you kind, understanding or caring.  HOWEVER, when you find Phycicians who have those traits it is wonderful! During this journey I have found both.  Thegastroenterologist  who did the colonoscopy that found my tumor was an unkind ignorant man.  He told me with a snicker that I had a cancer that was mostly found in gay men, but a little radiation would "melt it like butter".  Okkkkk... Here I sat obviously a woman, 61 years old, two children! Married, monogamous, no anal sex.  (not judging as I live in a glass house.). NEVER was HPV mentioned!   NEVER went back.

 

(i have gay family members that I love with all my heart, male and female.  I wasn't worried about being thought gay, it was the snicker, as though it was funny.)

 

 

LaCh
Posts: 514
Joined: Dec 2012

I feel that I need to offer a disclaimer before an opinion, so I'll just get that out of the way. This is my OPINION:  Vocation doesn't confer sympathy, empathy, intelligence or compassion, it's not a marker for kindness or smarts. People are people, whatever their chosen profession.  Doctors sit through 4 years of medical school, 4 years of specialty training and often 4 years more after that. What does that say about anything? About those qualities? Well, to my mind, it says perserverence and the willingness and opportunity to sit through many years of study.  That's all it says. It doesn't even say anything about intelligence. There are many intelligent people in the world and many who are not. Maybe they have other gifts even more valuable. Maybe they're kind. Maybe they're compassionate. Maybe they're idiots. Kindness, intelligence, stupidity, arrogance, they come before one chooses a profession and the ability to slog through med school doesn't indicate very much. This is just my opinion. PLEASE no off-the-topic remarks. 

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

I agree.  But it IS wonderful when it all comes together.....  

Its a beautiful day in the mountains.....  

mp327's picture
mp327
Posts: 2980
Joined: Jan 2010

How are you doing?  I hope things are good.

I am posting on your thread to bump it to the top of the list.  We have a new male member from NYC who is searching for a specialist because he is experiencing some troubling symptoms and thinks he may have anal cancer.  SteveS212 is his user name.  I thought perhaps you could give him some good info about doctors in the NYC who specialize in treating anal cancer.  I have already given him the name of Dr. Stephen Goldstone.  Are you familiar with him?

Anyway, I thank you in advance for any help you can give to Steve.  Take care.

SteveS212
Posts: 7
Joined: May 2013

Mark - I am having some very scary symptoms. Can you recommend a good, thorough NYC physician who specializes in anal cancer? Thanks in advance for any help you can give.

LaCh
Posts: 514
Joined: Dec 2012

Dr. Julie Foont, Third Ave, Manhattan.

mp327's picture
mp327
Posts: 2980
Joined: Jan 2010

Not to be critical here, but I would think that someone who wrote a book about cancer would know what "met" and "NED" mean.  Did you have anal cancer or are you here to sell your book?  Just wondering.

AZANNIE
Posts: 390
Joined: Mar 2011

I was wondering the same thing????

Ann

mp327's picture
mp327
Posts: 2980
Joined: Jan 2010

It looks like that post has been removed.  This is just my opinion, but I don't believe this is a place for someone to sign on solely for the purpose of promoting their book.  That's what it sounded like to me.   

pializ
Posts: 275
Joined: Nov 2012

I thought same as you. 

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