Thursday, March 20, 2008

On the Frontier of a New Kind of Cancer Survivorship

*I've received some news with regards to my cancer. This post is about that news but I have a few other thoughts so if you want to skip down towards the end, feel free but I'd really like it if you read what else I've written.*

So, you have cancer. You will be cured or you will die from it. Since the beginning of Western modern medicine, that has been the basic reality of most people who are diagnosed with some sort of malignant tumor.

Close to twenty years ago, my grandfather developed lung and throat cancer. He went through all sorts of treatments and surgeries. Eventually, they cut out lobes of his lungs and his parts of his throat. He died soon after that. Eight years ago, my mother was diagnosed with ductal carcinoma in situ (i.e. breast cancer). She had a lumpectomy to remove the tumor and then underwent radiation therapy. Five years later, she was pronounced cured.

That's it. There was almost nothing in between these two kinds of scenarios for a very long time. When I was first diagnosed with chondrosarcoma, I was told that a cure would be impossible in my case. The best they (the doctors) could do was to de-bulk my tumor and keep me out of pain for as long as they could, to the best of their ability.

I remember leaving the hospital after the oncologist sat me down and told me the news. With The German holding my hand, I managed to get to my car. As soon as I got inside and sat in the seat, I burst into tears. I sobbed and heaved and beat my fist on the dashboard.

How was I supposed to deal with dying? I was a mother. My daughter was just in elementary school. How could I explain to her that she was going to grow up without a mother? How was I going to get the strength to go through all of these treatments knowing that none of them could change the fact that this shit was going to kill me? My thoughts kept returning to all of the people I'd seen over the years as they quickly cycled through the stages of cancer and then died horribly painful deaths. Now that was going to be me.

After that initial shock, I began the process of dealing with my new reality. I decided that if I was going to have cancer, then I was going to be proud to be a person with cancer. I began to see it in the same way as I see being black, being a woman, being a mother. I joined a cancer support group and met lots of other people prognosed as incurable. I created this blog and met even more people who were living with their conditions. I had already been living with lupus and I had done some disability rights activism in college but it wasn't until the cancer came along that I really solidified my identity as a person with disabilities. I was no longer an occasional visitor into the world of the disabled living. Now, there was no escaping it, so I decided to embrace it.

That's where I've been for the past few years. Everything I witness and experience has been seen through the eyes of someone whose timetable is far different from that of my peers. How will I deal with retirement issues? I won't. That's how! Worrying about my family history of diabetes? Why should I?! Global warming? Well, at best, I can tell my daughter that she should be concerned about it but, as for me, my plan has been to enjoy these last few good years that this planet is probably going to give us humans.

However, it seems I may have to recalculate all of my ideas about the future. Earlier this week, I went and got an MRI. Yesterday, I took the trip to Mary Bird Perkins Cancer Center to see my oncologist so that he could tell me what he saw. The news was unexpected.

He came into the examination room and sat down with my medical records. He said that my scans came back good and my blood work looked okay as far as my cancer-related stuff shows. He said he noticed that I had been seeing him now for five years, so he went back and viewed all of my scans from the beginning. They look basically like the ones from this week. In other words, he doesn't see any change in my disease-state. At this point, he thinks that this is where things are going to stay. He can't guarantee anything because there just isn't enough data on my kind of cancer to tell what's going to happen. However, his view is that, at this point in time, I probably have a greater chance of dying in a car accident before I'd wind up dying of cancer.

My doctor, who is really a friend as much as he my care-provider, says that I need to start thinking about my options. I didn't understand at first but, he says, I need to start thinking about the future because I may well actually live long enough to have one.

So where does that leave me? To be honest, I don't know. My existence now falls outside of the two traditional prognosis paradigms. I'm still not cured but, in the oncologist's view, I am not progressing towards death from cancer. He says that he's most worried about my lupus at this point because, as I know all too well, it could also result in the same unfavorable outcome we've been expecting from my cancer (i.e. death).

What does it mean if I'm not dying from cancer but I'm not getting rid of it either? I think that everyone expected that I'd be gone by now, even the doctors. I remember one appointment with my surgical oncologist over at Tulane Cancer Center shortly before Hurricane Katrina/Rita. He had one of the medical students with him who was doing a rotation in the oncology department. He was a nice guy who had come from Germany to go to medical school in the U.S.A. We sat and discussed the differences between the European health care systems and the one we have here. The conversation was quite pleasant. He even tested me on how many words I could say in German. I failed miserably, of course.

Afterwards, the doctor started telling the student about my case and I could see his face drop as my prognosis was explained to him. The doctor tried to help the situation by saying, "Even though this is a difficult case, as you can see, Ms. (insert my name here) is dealing with it really well and always manages to keep a smile on her face through it all". I did my best to remain smiling but seeing the student's initial reaction really took the wind out of my sails.

That appointment is a prime example of how most of my doctors have tried to approach the topic with me. Each year I've been alive has been viewed as one year closer to my death from cancer. There were lots of reassuring talks when I mentioned my fears of being wracked with pain on my deathbed but nobody denied the fact that I did have to face dying from cancer.

But now I don't? Even my doctor doesn't have any answers about how to deal with this. In a way, my reality won't change at all. My body has been through a lot and I'm going to have to remain on my medications to manage the pain and neuropathy caused by the treatments I've received.

On the other hand, I have to consider what in the world I'm going to do now that I may have some reason to believe that my future may be longer than I've imagined for many years. My brother and cousin and partner are all very happy about this news but I'm having a lot of trouble processing it all in my mind. To be honest, it's quite scary. I don't understand this supposed new reality. Where does it leave me? Can anyone else help here because I don't even know who I can talk to that's in this particular situation?

42 comments:

donna darko said...

This is great news! And you are amazing.

Zan said...

Maybe you could try thinking of it the same was as Lupus? I know it's always in the back of my mind that some day I could wake up and BAM, things are suddenly much, much worse. But that doesn't mean I don't plan anyway. You're having to shift your whole worldview here and, even though it's good news, that's huge. I imagine it was rather freeing, knowing you wouldn't be around too much longer. Sort of lifting the burdens of living, in a way. Now you've got all those burdens back unexpectedly. And yeah, that's huge. But now you've really just got two chronic illnesses to deal with. And you know how to deal with that, so . . .

Octogalore said...

Bint, this is wonderful news.

As far as guidance -- it's a challenging question! One I cannot identify with personally. My mom was diagnosed with lung cancer about fifteen years ago and was given low odds, but it was removed and she now has 90% chance of what her life capacity would've been without it. She is in a different stage of life than you, though (she's 65).

Are there therapists around who deal with these kinds of issues? It sounds like an area where a specialist might be helpful.

Blackamazon said...

Oh how i love you THank you and jsut

* is so happy she could bounce*

deviousdiva said...

Sweetheart. I can only share with you what my mum ( and we) went through 30 years ago after living with having a year to live (ha). She raised us (me and my three sisters) She "allowed" us leave home (some of us too far!) and then she lived her life (because that's what women do, folks).

Now we worry about her for riding horses, for running around like a teenager, for her not getting enough rest and endless other things.

We still worry about her dying but my goodness, there are worse things... that she hadn't lived. That she was bitter and consumed. That she lived each day waiting to die.

So here we are, (I am). 30 years later wishing you a life full of hope and love and respect and possibilities. Because we just don't know where it will end.

I don't know what you should do or how you should feel. But know that your baby girl will understand what life means. And that you will have lived it.

Bint, you are an inspiration to me and I am so happy to hear your news. Keep on doing what you are doing. I wish I could give you a definitive answer or some guidance but I can't. Just know that I think of you everyday (even though I don't leave comments that often)

And that I am looking forward to hearing about this next phase in your life. However long or short... and I hope that one day day I will get the chance to meet you for real.

belledame222 said...

Holy hell, Bint! That's just...beams oh, wow.

and I think I can kind of grok what you mean, although obviously not that exact situation. The unknown is unsettling even if it's good news. Hope you find someone to connect with about this soon. meanwhile *xoxox*

p.s. also, on the talking front, there are tea and scones in the parlor, stop on by, we miss you.

MormonSoprano said...

Wow. You have done such a beautiful job of expressing yourself and describing your unique and difficult situation. You are an extremely articulate and intelligent young woman and your wisdom will serve you well as you move forward. Last year, my daughter was misdiagnosed several times and we went through a miniature version of what you have. As her diagnoses and treatments changed we were constantly having to readjust. It was agonizing. Finally, I knelt in prayer and I gave it all to God. Peace came into my heart. My strength has been keeping faith in a God who knows all things and has a plan. I truly believe that we each have a purpose on this earth. We do not die until God allows us. Miracles are real. You are living proof of this. There are obviously some very important things left for you to do here. Being able to spend precious days with your child; teaching, loving and guiding, is certainly one of them. My advice is to make plans for your future as if you expect to live to 100! Don't waste your life doing things that do not bring joy and fulfillment. What are your dreams? If you could have any career, what would it be? What education or training do you need to have? Go for it!

The moment we are born on this planet we begin to die. Our lives are on loan. So, it doesn't really matter if we die tomorrow. What matters is if we make the most of the todays that we have! Thank your Heavenly Father for your new gift. And since He has gotten you into this new situation, you have the right to ask Him to help you. He will speak peace to your heart and mind and guide you. You are His child and He loves you. I am positive that you will accomplish mighty things!
- Sending a hug and a prayer

Plain(s)feminist said...

Wow - this is awesome! A lot to deal with, I'm sure, but ultimately awesome.

This may be a dumb suggestion, but I'm wondering if people who have gone through major life changes - like, for example, nuns leaving the order or such, might have written things that would be useful for you to read right now?? I'm wondering if drastic shifts in how one perceives the future might be helpful, even if they aren't the same kind of shifts as the one you're experiencing?

AnnMarie Kneebone said...

I don't have any answers, but I can totally see how this could throw you. You've made plans and you have had certain expectations. The work you have been doing is intense intentional work. Now, at the very least, you have to reconstruct something that you put closure to. Am I right? If so, my guess is that you came to a certain peace about everything. Now that peace is disrupted.

Given all that you've done I have no doubt that you can absorb this new information and find meaning in it. It means reconstructing your life once again - and that can be exhausting. Take your time. There's no rush. You may have to mourn the loss of what you made peace with that is now disrupted.

Bottom line - your struggle makes total sense to me.

hexyhex said...

Wow.

I haven't read too much of your blog but... wow. What a thing to process.

Congratulations seems like the wrong thing to say... but congratulations. And good luck.

Rootietoot said...

Well! Ms. Bint, I am smiling and laughing for you! If it were practical I'd bake you a pie.
For all our differences, you are inspiring.

elle said...

Bint!!!! Oh my God! I have tears in my eyes. Good, good, good!

Salspua said...

Bint Alshamsa ~
Do you have any idea how amazing you are? Not specifically for stumping doctors with your cancer not doing what they expected, though that's wonderful news. You are amazing because of who and how you are, beautiful soul. I love reading what you have to write, and your thoughts almost always give me the opportunity to expand my own sphere of understanding. I love your clear and unapologetic expression of your truth.

I wonder how much assuming that you did not have a future impacted your strong and unapologetic self expression, as if there's no time to muck around with feeling sorry for one's self or others' selves. This year I have had three people in my life in one way or another who are living with dying, and they have impacted me strongly. You are one of the three. All three of you seem to understand that the moment is all there is, which is the truth whether one has a life threatening illness/condition or not. I take this to heart.

I don't know that you need to do anything differently with your new news. Maybe it's a matter of identity. My first grandchild is due October 8th. Wrapping my head around being "Grandma" took a little bit of reordering of who I think I am. Maybe the idea being the mother of an adult is a shift for you, or Grandma, or celebrating your 40th birthday. And maybe I'm totally off, what do I know?

Thank you for sharing your journey with us!

Big hugs ~~~
sal

Gwyneth said...

I mostly lurk, but I'm de-lurking to offer my heartfelt congratulations!!

I would also like to add that I find your decision to be "proud to be a person with cancer" very inspiring.

--Gwen

Aaminah said...

I can give you no advice really. You have been living each day as if it could be your last. I see no reason to change that. Yet, I imagine you might feel a level of responsibility for what you do with so much potential time on your hands. :) I'm happy for you, and for your family even if I can offer nothing more than cyber-hugs. :)

Tigera Consciente said...

Blint, change is never an easy process.Regardless of whether its good change, bad change, or just big change. There's a lot of rethinking and reshifting to consider, and sometimes there's fear that comes with any sort of uncertaintly. But change (I know this is cliche) is the only thing that is constant. And I can tell you have the strength to settle into a new mind frame, as you have cited here and throughout your blog. If its one thing I've learned to understand from reading your blog, its gotta be courage.

lethal said...

I'm really, really happy to hear this! I think that it is normal for adjustment to the new reality to take some time. Your whole identity as a person has (necessarily!) revolved around the fact that death was imminent. Developing new ways of seeing yourself, as well as (perhaps) new ways of living--new goals, new attitudes, new self-concept/s--will be a process. I used to struggle a lot with mental illness and rethinking myself now that it isn't part of my daily life has taken several years. Sometimes, still, I'm caught off-guard by how totally awesome my life is and how happy I am. If you want someone to talk to, you're welcome to talk to me (I've read your blog for a few years under various names, though I hardly ever comment). xoxoxo

A friend of mine has brain cancer that hasn't progressed in about ten years.

Lisa Harney said...

This is the best news I've read in the past month. It's wonderful that your condition is stable and looks to remain so for the foreseeable future.

I sympathize about the sudden change in the future, or rather the having one. That's... I don't know what to say about it. I'm just really happy for you right now.

sly civilian said...

what wonderful, amazing, challenging news.

bint alshamsa said...

Donna Darko,
Amazing? Well, if you think so, then that means a lot to me!


Zan,
It's true. After I came to grips with the cancer reality, it really was freeing to know that I wouldn't be around for very long. I'm really thankful for my lupus because I think that you're right; it will probably help me to process this new reality by considering how I've dealt with that.

Octogalore,

It still amazes me to hear how far medicine has come with extending the lives of people with cancer. I'm definitely going to have to get with a therapist. I had one guy who was really good and then he moved his practice. I was so down about losing him that I never put forth much effort to find a new person. Now, I'm really in need of a therapist to sort this out. *sigh*

BlackAmazon,
I think you've been using your virtual machete on my cancer. Imma have to watch out for you! You're too powerful for me!

DeviousDiva,
You know, throughout all of this--How long have we been friends now?--I've felt that your situation has given me the best glimpse into my daughter's future. I didn't even imagine that I'd be around to see her reach the stage where you are now but looking at how you've coped with having a mother with a disability made me really hopeful and comforted when I thought about VanGoghGirl's future, whether I'd be there to see it or not. It's so many things...I hope she does become the sort of woman that you are now.

Belledame222,
I'm going to have to visit this week. I've been a bit indisposed due to my stomach issues. I'll have to write about that too, soon. Save some scones for me, sil vous plait!

MormonSoprano,
You know, I thought that my dying young was a part of God's plan for me. I've always had a difficult time with faith. Growing up, I always related to the apostle Thomas. After the resurrection, Jesus of Nazareth said "Because you have seen me, you have believed. Blessed are those who have not seen, and have believed". Whenever I read that, I always thought, "Well, I'd be satisfied just to be Thomas who at least believed once he saw." Why did God see fit to have me live with this new reality? I don't know. Maybe the Creator is showing me that I shouldn't assume that I have everything all figured out.

---------------------
I'm going to respond to the other comments in a bit.

Lisa Harney said...

Also, I'm sorry I haven't been commenting recently. I sort of stopped reading nearly all blogs as I was sick and didn't have much energy. Plus, other stressful stuff that doesn't need to be described here. :(

And I'm still really happy for your news. :)

Maegan la Mala said...

Wow mujer, I don't have words because dealing with this is something I personally haven't had to process. What happens now depends on how you move forward. The truth is that even before this positive news you were living, writing , thinking, now maybe the next step is how to cast your net wider because well you can! baby steps amor-

Un beso.

Daisy said...

This is so amazing and intense, I hardly knew what to say on first reading it; I was just tongue-tied...and now, not much better!... now I can only say hallelujah! :)

BLESSD1 said...

Bint...I find this to be pretty awesome stuff. I'm glad that your prognosis isn't grim, and I will continue to pray for you and your family.

Big Noise said...

Bint--
I have nothing more to add to what has already been said. I have enjoyed reading your blog and getting to know you.

I look forward to reading more about your journey, for a long, long time.
With love,
Cilla
aka Big Noise

Daisy said...

I hope my previous comment didn't get lost? My connection was pretty iffy last night.

?

donna darko said...

You were amazing from day 1 since I started reading your blog. Most people think you are amazing.

To reflect on something Devious Diva said, 35 years ago my mom said it was her last Christmas/year. It was extremely traumatic to hear this as a 5-year-old. They found a cyst in her breast and we had to Mayo Clinic in MN to get it out. She was 41. She's 76 now.

La Lubu said...

Bint, this is good news. I'm very happy for you. I'm sorry, but I have no advice----for what it's worth, I was 19 when my mother was first diagnosed with cancer. I turn 41 in May. It kinda blew her mind when she finally realized that her years weren't exactly numbered any more than anyone else's were, too.

My daughter spent the first six months of her life in the NICU. When she finally got to come home, all the nurses told me, "enjoy your baby!" They told that to all the NICU parents--"enjoy your baby." Mostly because we were all still kinda shell-shocked, even when we realized our children were going to live. It was going off into a new wild blue yonder, a less medicalized one. Maybe we needed that reminder. I know I did. I never knew what "normal" was, and now I was being told to get used to normal---that somehow, some way, everything was going to be relatively normal---as normal ever is, anyway.

So---enjoy your years, just the way you have been. I've been a lurker here for a while, and one of the things that strikes me about what you write, is how much you savor life, in all its expression. How much you notice---you pay attention to detail. How much you love people. You have a strong, beautiful soul. You already know how to enjoy and appreciate the gift of life---and it looks like you'll get to keep on doing just that. Salud!

Zoe Brain said...

Now comes the hard part - you have a future.

You don't have to deal with it alone though, there are many people throughout the world who have been hoping for such a favourable outcome for you. And who are there to help any way they can.

You know, it would be ironic if it was the lupus that was keeping your cancer at bay.. stranger things have happened. I hope you will consider doing what you can to help medical science here. Please start with living to at least 100, a long, happy, pain-free life, full of accomplishment and meaning.

You've made an excellent start!

Hugs, and doing the Happy Dance over this news, Zoe

"Sudy" said...

Un abrazo fuerte.

CrackerLilo said...

So glad, so glad, so glad!!!!!

:'-)

Ettina said...

So, it's probably benign, rather than malignant?
Have you ever read the book Too Late to Die Young? It's by this woman with muscular dystrophy, who as a kid always figured she'd die young because MD is supposed to do that, and when she was getting to be middle aged, she suddenly realized that she wasn't young anymore and she hadn't died yet.

Trinity said...

Also, I'm glad or you, but I understand I think what you mean. Your whole life has ben wrapped up in your foreshortened future and your ways of dealing with that... and now that is no longer so, or may not be. And you have to figure out a new structure for everything.

*hugs you*

Carlos ("Carl") said...

An insightful post, Bint. Thank you.

Yes, there's considerable ambiguity associated with certain types of cancer. Wendy Harpham's blog is a pretty good one for dealing with this, if you haven't found it already:

http://wendyharpham.typepad.com/

I've been dealing with it as my aggressive lymphoma has morphed into an "incurable but treatable" indolent variety. Will this be the thing that will kill me? I used to think so. Now, I'm not so sure, and neither are my docs.

Hang in there, through this new reality.

Carl Wilton
"A Pastor's Cancer Diary"
http://www.cewilton.blogspot.com

Ktrion said...

Wow. okay. wow.

Here we are. On this side.

Much love to you, sister.

Breez said...

Though I know this is quite a bit for you to process, do what you did before: live your life to the fullest, one day at a time. I don't have cancer, but I am also not promised tomorrow.

And *ahem* in case you forgot, I told you LOOOOONG ago, that I don't know what kind of grass you are made of, but you sure in the hell ain't going anywhere. So, please feel free to add that to the extensive list that should be titled "Shit Mamba Was Right About."

So now, it's anybody's guess on which one of us will have to wipe the other's ass as we drift into old age...

RainSong said...

I have been praying and praying for your healing and I'm elated that you will be in the surface of this planet to bless us with you presense, your insights and your energies.

In all of your wisdom, there have to be things that you cannot see. I didn't fully make sense that someone with your light could be in the process of leaving us. You're not and that is wonderful, wonderful wonderful. I am happy for you and happy for all of us.

I have to include this disclaimer. I don't agree with your poltics, but as Cicely has pointed out, we have always disagreed and at the same time had a warm, mature and respectful relationship. Although I have been silenced, somehow I wish we could continue a respectful interaction. I have always wished for an enduring one.

At least you will endure. That is a wonderfule part of my wish.

Anthony Kennerson said...

WOW...that is outstanding news (although, serves me right to learn about it so late..arrrrrgh)

Having lost so much of my own family to cancer (both parents and my older brother), it's very heartening and inspiring to see that you are beating back yours. (Yeah, it may still be there, but at least it hasn't grown.)

As for making an adjustment from "Death Watch" back to somewhat normal living: well, it will probably take some time to reorient yourself back towards an actual life...but with the friends and family you have, I'm sure that you will get plenty of support.

In the meantime, Bint, all I can say is, just keep on keeping on like you have been. And just remember, that what doesn't kill you will always make you stronger....and giving the Grim Reaper the middle finger never sucks.

Live long and prosper (as the Ferengi used to say).


Anthony

nixwilliams said...
This comment has been removed by the author.
nixwilliams said...

oh, that's amazing news! and it's also a challenge that i'm sure you'll approach with the grace and integrity that seems to characterise all your encounters.

(i've been offline, so i'm just catching up on the goss)

Daisy said...

Trackback... leaving this manually because sometimes they work, and sometimes they don't!

Harriet McBryde Johnson 1957-2008

rachelcervantes said...

I have early onset Parkinson's disease, diagnosed at 46. One of the ways I've tried to keep it in perspective is by saying, "Oh, well, it could be cancer, so I've no complaints." I, too, have children who are young, ages 8 and 12.

I wish I had something profound to say. I can't say "I understand," because I don't. I only know what it's like for me, with my life, such as it is, with my disease. All I can really say is, "I hear you. I'm listening. And I hope a few will listen to me, too." That and blessings (from whom/whatever is appropriate for you).