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"The Tumor Markers are Unchanged"

Yesterday, I went in for my now semi-annual check at M.D. Anderson. Generally, things are going well, except for the new insurance company. It's bad enough that I got laid off by my old company, but the new job meant new medical insurance, and as some folks predicted it's not a patient-friendly company. But that's for another time, perhaps.

Dr. Mansfield was, as before, cautiously optimistic. What had been four visits a year was dropped to two a year after my visit in July, and Dr. Mansfield told me that he saw pretty much the same thing as last time.

"The tumor markers are unchanged", was how he began. After seeing the blank expression on my face, he explained for a couple minutes that my condition in general was unchanged, which in cancer terms is good. Actually, I'm doing very well, certainly more than I have a right to expect. It appears that my little floating bio-bombs started an uprising back in 2006, got cleaned out for the most part when Dr. Thomas did my surgery in November of that year, and have basically contented themselves to just float around and lurk in my hydroperitoneum. They are still there, just floating about and hard to detect and count except for a cyst on my spleen, not messing with my blood cell count or any of the things that indicate metastasization. As usual, my blood pressure is a little high, even with taking my Exforge, and I carry around a bit more belly than I like, because of a bit of extra fluid. But nothing really serious. Just take my medicine and do my visits, sometimes to my primary doctor and sometimes to MDA.

Oddly, that's one reason I hate these visits to MDA. I feel like I have no business going in for tests and consultations when I'm not going through any of the things most cancer patients have to endure. I have not had to go through Chemo, no radiation treatment, I got to keep all of my hair, have not had nausea in a very long time. I sit in the waiting room for my tests and doctor visits and feel horrible, partly for how much pain and suffering I see, and partly for the fact that I don't fit. Of course, my wife would be upset with me if I sounded like I wanted to go through all those things, and I understand - mentally at least - that there is no shame in having caught my cancer early, that my visits are necessary to make sure it has not come back, and my doctors remind me every so often that because the cause of PMP remains unknown, what causes it to metastasize is still unknown, and because my condition is unusual - the cancer having been caught early because I ruptured my appendix - I represent an opportunity for learning more about the thing and MDA is a part of UT Medical Branch and therefore a teaching hospital, that it's important, a good thing, that I come in for these visits.

Still.

Why was I lucky, but so many others are not? Why can't I do something that actively helps other cancer patients?

And of course, at the back of all of that, there is that little knowledge that while on the one hand I get to enjoy a comfortable lifestyle and good reports that the nasty little cells are still at bay, there is no way to know what will happen in a couple years, much less later on. The first incident came out of nowhere and the cause of PMP has never even been suspected, and while they are not growing, neither have the tumors gone away. You can't kill them with drugs or chemicals because they don't act like any other known form of cancer, you can't find them all and flush them away, they are there and always will be, floating inside your abdominal walls unless and until they decide to attack you. Makes them sound like a tiny pack of bacterial wolves, I guess, but the point is that while they are well-behaved little cancers in my case, they are a bunch of tiny little microscopic things that don't belong in me but I have to live with them for the rest of my life.

My point? I don't have one, really. I just needed to rant, to give voice to worries and some irrational thoughts that nonetheless needed exercise and expression. To express a sense of being an outsider, both from the community of cancer patients and yet also unable to deny my cancer, either.

I've been called lucky. I understand why, but I still don't feel lucky. Not about this.

Just tired. Frustrated. And mad at myself for being this way when others have it so much worse.

Some days I can't find easy answers, is all.

Thanks for your patience.


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Comments (15)

1. Find someone who loves ... (Below threshold)
twolaneflash:

1. Find someone who loves you to hold you really tight.

2. Find something to laugh at really hard.

3. This too shall pass.

Don't think too deep on thi... (Below threshold)
GarandFan:

Don't think too deep on this one DJ. There's a reason for everything. Just look at Barry Obama!
:)

Grats.You're a sur... (Below threshold)
Gmac:

Grats.

You're a survivor, enjoy life, no one gets out alive.

Wow, you just described my ... (Below threshold)
RickM:

Wow, you just described my last six months. Substitute "stroke" for "cancer" and you have nailed it. I got hit with two strokes last year, about two weeks apart. I was unlucky enough to have the strokes but was blessed in that they occurred in an area of by brain housing group that does not affect me in any externally noticeable way. No paralysis, no speech impediment; nothing but now being noun challenged. I can look at people I know and love, understand that I know and love them, but cannot remember their names. A small (but annoying) price to pay.

When I go to the doctors I am surrounded by people whose lives were absolutely devestated by a stroke. There is an elderly woman who lives across the street that stroked out the same time I did. Her's just about completely removed her ability to communicate. You can see the pain and frustration in her body while she tries to make people understand.

I was blessed, if it is possible to be blessed with a stroke, in that the affliction has had such a small external footprint. I'm also constantly thinking about the next one. Will it be the one that lays me low? We have to deal with the cards dealt to us. We were fortunate in this deal; but there are still many cards to be dealt in this game.

Hmm, it also seems to have ... (Below threshold)
RickM:

Hmm, it also seems to have affected by ability to spell.

Semper Fi

"I have not had to go throu... (Below threshold)
glenn:

"I have not had to go through Chemo, no radiation treatment, I got to keep all of my hair"

Me too, 16 years ago, count your blessings. I do it every day.

Why can't I do something... (Below threshold)
scmommy:

Why can't I do something that actively helps other cancer patients?

YOU ARE doing something actively - you are following doctors orders and allowing them to learn from you so that maybe they will learn something that will help others! Maybe, just maybe, God has a plan here - it's not our job to know what it is, just follow it.

Will keep you in my prayers that all continues to go well.

Don't let the survivor's gu... (Below threshold)
epador:

Don't let the survivor's guilt lay too heavily on you. Rant away.

And congratulations. Its rare to have "an interesting" problem and do well! Enjoy!

And keep up the good work!

Profound "ranting", DJ.<br ... (Below threshold)
Grace:

Profound "ranting", DJ.

That is the interesting thing about life. Bad things happen to good people, good things happen to bad people, bad things are lurking in wait for you (as I understand your medical situation).

We can ask ourselves why we were born so lucky as to live in the USA and not in Haiti...

Life is like a wonderous, awful, complicated river with bends and rapids and beautiful serene places.

I mostly just try to enjoy it and stand in awe and wonder and thank God that I am alive.

DJ:I feel the exact ... (Below threshold)
Dave:

DJ:
I feel the exact same way with my MDA visits. I don't hate them though.
I have (had?) a rare cancer (appendiceal goblet cell carcinoid), had a surgery and no chemo. No evidence of disease. For that I guess I am a little better off than you, but I agree with your every feeling above. I'll be back on the 7th floor in April for another round.

DJ, I am very happy that yo... (Below threshold)
Rick13:

DJ, I am very happy that you're doing well. I'm reminded of a line from the show "Talk Radio". John Ritter said to Phil Hartman, "You take care of yourself, we need you around!" Take care, keep up the good work here at Wizbang and God bless!

I'd just like to second all... (Below threshold)
Hank:

I'd just like to second all of the great comments above, especially Grace's.

Take care, we care.

DJ, I think the imp... (Below threshold)
Knightbrigade:

DJ,
I think the important thing is that you get (IT). Even though you didn't go through what you see around you, you appreciate and understand how important good health is.
You also see what kind of battle it takes to fight a serious health issues.

Good continued luck!!!!
And look forward to some mid-term poll analysis
in the future..

DJ congrats on the tumor ma... (Below threshold)
MF:

DJ congrats on the tumor markers being unchanged.

The part I hate is going for my regular checkups (this is years later) and I see patients that are very sick having to wait at the doctor's office for hours. I wish I could take some of their weakness away and give them some of my energy.
I am a cancer survivor too.

Your honesty and thoughts are truly appreciated.

Your writings make us smile and bring us comfort. Thank you!

Want to help other patients... (Below threshold)
Bullwinkle:

Want to help other patients? During my years of treatment at MDA I went to the pediatrics wards and read to the kids nearly every day.

I lived over 500 miles away but I booked my trips with extra days just so I could.

I also donated LOTS of money.

There's plenty to do to help and not nearly enough people doing it. Just ask the staff.




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