What If

It's been hard to ignore, but I've done my best, mentally erasing the implications of the two marks just below my left knee, the tiny ends of the suture waving back at me with a decidedly insouciant air. They're right there, couldn't be more in the my field of vision if they tried and every time my eyes skipped over them, there was a nanosecond of what if and then I moved on to ignoring the handiwork on my leg.


But it's been building, all the what ifs piling one on top of the other and although each was tiny, a couple of weeks of this has created a bubble within, each filled with a tiny moment of dread and it's built and it's built and sometime around Tuesday evening, I couldn't contain it any more. I called David late at night and asked him to remind me that there isn't a perverse power in the universe whose job and mission it is to create chaos in my life, because believing that would be kind of nutty, wouldn't it? Still, the fact that this blog has a label called Cat Toy of the Universe should tell you something of my opinion on the matter, because in addition to the more ridiculous moments of my life, there is that whole autoimmune disease at the age of four for which I haven't yet quite forgiven the divine.


And there I was, the bubble of dread bursting and it all spilled out in a torrent of fear and I finally said the words. Said that I wasn't afraid of dying, I was afraid of losing my life.


My mind knows that 99% of people with melanoma live and live well and nevermind the woman I once knew who fell into the 1%. Those are pretty good odds, but the question would be if the moles were malignant, would I have to stop Humira?


Even just thinking it makes me nauseous.


Because Humira is a TNF blocker and TNF means Tumor Necrosis Factor, described by Wikipedia as a regulator of immune cells and "[d]ysregulation of TNF production has been implicated in … cancer" and it sort of stands to reason that if you have the C-word, it's not a good idea to block the tumor necrosis factor, right?


Absolutely terrified does not begin to describe it.


Before the Biologics, before TNF blockers came into my life and saved it, RA was taking my life, eroding who I was, taking another bit and then another every day and if I can no longer take this medication, it's there. The RA. Looming above me, poised to swoop down and start the feast all over again, waiting to consume my life, bite by bite. And I have just only recently decided to accept the possibility that I can plan long-term, can settle in and enjoy without dreading that it'll be taken away again, any day now.


I have energy to spend with my family and friends, I have a job that I love, I'm watching my sister's kids grow up, I'm writing a book, am madly in love, have adopted a new feline and all of these show a commitment to years, to decades. All of these are symbols of a life I have built and it's just begging for the other shoe to drop, innit?


Last time, I knew, just knew, that the moles removed were benign. This time, I didn't. I didn't know that they were not, either, but I had no sense one way or another. And I could logically think back on what the dermatologist said, what the surgeon said, but the bubble filled with small, quick moments of dread still built and no amount of trying not to worry until there is something to worry about would stop it from expanding. And it wasn't until I said the words, until I said I am not afraid of dying, I am afraid of losing my life that I could breathe again, because now it was out there. I was still afraid, but saying it out loud burst the thing, sopped up enough of the little what ifs, of the fear of possible loss, that I could suspend the worrying.


Fear articulated loses power and so, I slept the night before last. Still, arriving at the clinic yesterday was an exercise in not bullying the receptionist into getting me in before my turn.


They’re non-cancerous.


And whereas I believe it's healthy to be reminded of how damn lucky you are, may I respectfully request that the next such reminder isn't quite this nervewracking...



p.s. K - you left a comment on yesterday's post about your friend who has RA. I've lost my list of people and their blogs (damn comment system and yes, we're still working on it) - send me an email, please? I have some thoughts on your friend's situation.




Comments

CraftyCripple said…
I'm so pleased that the moles were non-cancerous.  I cannot begin to articulate the fear that I would feel if I was taken away from my medication.  I don't think I would know what road to take.  The decision would be horrific.  I'm so very relieved that you do not have to make that choice. 

You have an interesting and challenging life, not without it's difficulties, but you wouldn't want to lose what you have got, I know I wouldn't.
Andrew said…
Lene,
Good news indeed. My neighbor had a stage 2 malignant spot removed last year and they gave him a good prognosis. This link between RA and cancer, now exacerbated by TNFs, is always lurking around in the literature and with medicines. I'm so glad you can now rest assured that these spots are clear.
Andrew
Carrie said…
It's the bad shit happening to children all over (your 4 yr old self, people I love, children in the news) that make me doubt the existence of a divine.  If he's out there, he has a lot of answering for, which would be interesting as we are not on speaking terms.
Glad the spots were just spots.  Fears are always smaller when you say them out loud, I think.
janle said…
So glad the were benign. Hubby had a cancerous one removed last year - it freaked us out a bit and we avoided the beach ( our second home) most of last year. then one day we just stopped and thought about what we were doing. The damage to his skin was done years ago ( probably childhhod when we were all unaware of the damage that the sun could do). As long as we take sensible precautions it is going to make no difference at all to whether it comes back or not - and meantime we were putting life on hold.
Life is too short for what if's. We have to live it as if tomorrow was the last day, not because it is, but because it might be.
liz@millerhousehold.com said…
Sending you hugs and love. And so happy that they were benign.
AlisonH said…
I'm still trying to understand how tumor necrosis factor--ie, tumor-death factor--can cause cancer, but having been on Remicade and Humira myself, nevermind. I shudder your shudder. I'm very glad yours turned out okay.
lene501 said…
Humira, Enbrel and Remicade are TNF blockers and blocking the TNF means its wonderful tumour death factorisn't working. Therefore, if you get cancer, having the TNF blocked could conceivably be counterproductive to beating the cancer.
lene501 said…
Thanks for this one. it put things in a completely different perspective for me - I'd been feeling guilty about sitting in the sun, even if it's only 20 minutes at a time. Of course, I may be creating problems for my 85-year-old self, but I do try to avoid the burns. And you're right. You can't put life on hold or waste it with what-if's. Except for brief moments during a two-week waiting period. :)
lene501 said…
I'm with you. For the people who every now and again tell me that God had a plan by giving the RA, I tell them that implementing a plan by giving a small child an incurable disease seems to reveal the kind of personality that is incompatible with an image of a benign deity. I also have a number of bones to pick with the guy, but not being on speaking terms, am running into the same problems as you in terms of delivering the talking-to.
lene501 said…
No matter what, once you hear the word malignant, it's scary - I'm glad your neighbor got a good prognosis. And yes, deliberately taking something that can increase, even slightly, your chances of developing cancer is one thing, as long as its theoretical, but when you're looking down the barrel of a biopsy,it's a completely different story.
lene501 said…
I know. Gibbering in a corner. don't even want to think about it.
Wren said…
Lene -- I'm so very glad for you that these moles, like the others, were benign. That said, I know exactly the fear you're speaking of. A couple of summers back, my OB/Gyn found a lump in my left breast that was confirmed, a week or so later, with a mammogram. Eventually, it was biopsied (this took, finally, nearly three months) and during that time, while I was told not to worry, of course I DID worry. It's an awful feeling. 

Here's wishing you a lifetime of peaceful, fearless sleep each night. Hugs to you.
Wren said…
Oops. And the lump WAS benign. Whew.
Oh, man. What a relief. I am so very very glad that the news was good.
Judith in Ottawa said…
At the end of this story I felt like Kermit the Frog, hands waving wildly above my head, "YAAAYYYYY!!!!!1!!!"
Trevor said…
YAY!!
Karin said…
I was at the edge of my seat, and had to skip down to try and see the result.

Whew.

I tend to do the same thing.....blowing things out of proportion in my mind...you had a wonderful way of expressing what you were going through.

Oh and i am so glad to hear you are writing a book.
Karin said…
Yeah. and how about the perfect little girl that was stillborn to a friend of mine two weeks ago? I have been in a state of "that does not make any sense whatsoever" ever since.
Diane said…
I know exactly how you felt...had a lump in my left breast a few years ago that biopsied benign and finally went away all by itself.  That completely wired, yet totally unstrung feeling was quite unsettling.
Diana Troldahl said…
I am so glad they were benign!
My Dad ignored many a sign of skin cancer for years, and is having it dealt with this month.
Yes it is cancer, yes, the surgery is pretty horrific (part of his nose and ear are gone) but I am so glad he was man enough to finally go. 
Also, because it can be dealt with surgically, he has no chemo or radiation to worry about. Since he is struggling with the results of the strokes he had a few years ago, I can be grateful for that, as well.
Should this same worry raise itself in your life again, because the solution is surgical, and melanomas are mostly discrete, it is possible you would still be able to keep taking the drug that helped you take your life back. 
Love and hugs,
Diana (otterwise.blogspot.com)