Posts Tagged ‘pessimism

04
Jun
10

Bad Times at We’reNot High

Not this week which is just finishing, but last week, I had an emotional crisis.

Brought on in part by my homebound state, which in itself is partly brought on by trying to get my pain management right, it also digs out parts of me that were the most pessimistic and cynical aspects of my personality for many years. No matter how long ago or how thoroughly I’ve changed from that alienated, hard-headed, angry, blameful, unhappy person that I was decades ago, there are remnants of her that lay in wait for just such a difficult time, popping up her little Alien head right in the middle of my chest, leaving a bloody mess for me to clean up.

Now being homebound is bad enough, and being whacked out (or not enough whacked out) on pain medication is worse, but add in an insidious little voice that tells me that I’m not good enough for my friends, and why would anyone bother to be in touch with someone who doesn’t bother to be in touch with them, and you’ve got three prime ingredients for emotional crisis.

It’s true that I haven’t been very good at keeping in touch, although it is hard to do when you spend a lot of time sleeping; and even more difficult when you can’t seem to get the pain meds balanced so that you’re awake enough without  being in too much pain. But the fact is that I *know* that the people who love me love me in spite of my poor communication style. Knowing that they have full lives is much more the kind of the thing that the “normal” Julie would think, or that they’re worried about overwhelming me with contact when I’m having enough trouble just getting my meds balanced, or that they’ve been meaning to call and are just no better at it than I am.

Sadly, I have to spend so much time with “Used to be Julie” who still resides in my head just for these kinds of instances, that it doesn’t take much to push me over the edge into depression and self-pity.

So that was the state I was in for most of last week. I basically told Brian that the only things keeping me living were he and the dog and cats, family, and friends – at that point, I told him, I have no purpose in life other than to be here because of them.

I’m not sure which is more pitiful – that you could read it as being that I’m just sticking around because you poor people need me; or that it is so depressing that I could believe living because of the love I have for that group is barely enough to keep me holding on.

Brian, bless him, understands me much better than anyone, and he knew that I needed to talk about it. And talk we did, around me sobbing into his shirt – I think this is the first time I’ve had a serious cry about being told I have terminal cancer. Of course I have something to be depressed about, but there’s no need for me to go creating reasons to be depressed.

One of the steps we decided on is that I need to get out of the house more often. The tricky part with this is a) choosing an activity that isn’t overwhelming or too long for the amount of energy I have (or am likely to have, when planning in advance). This weekend, we implemented this part of the plan by getting out to see a couple movies. You know, terminal cases can make anything seem profound, but does it seem like a bit much that I sobbed through the preview for the remake of The Karate Kid? I used up nearly half my allotment of kleenexes for the whole movie just on that preview alone! I managed to get the dose right to be able to stay awake and mostly comfortable in the movie theater seats; so we decided to try again and went to see Iron Man II on Monday. Again I hit the right dose. We did go out to dinner afterwards to The Old Spaghetti Factory – unfortunately my tastebuds are all whacked out from the chemo, so it was more or less a wasted effort on my part. Brian had leftovers for Tuesday, though. Just getting out helped my mood immensely.

The next biggest step to implement is for me to get over my fear of asking people for help. I’m afraid of being a burden, especially this early on in the whole process. In this particular case, help is synonomous with coming to visit. I’m going to figure out a way to set up a calendar that people can log into and put their name down for visits, but in the mean time, I am going to handle it manually.

I learned from a visit by my friend Sue yesterday that 2 hours is about my top max time – I was definitely ready for a nap by then. I’m having chemo on Tuesdays now for a while, while my Wednesdays have support group. Probably the best time to visit is either Monday afternoon/evening or Thursday afternoon/evening. Mornings are much more difficult for me, since they’re a prime time for sleeping. As long as I know in advance, though, pretty much any day but Friday is OK (Friday evening works, but morning/days don’t really).

The third step is for me to get out to visit people. Wednesdays, as mentioned is for my support group. Leah is putting together a small group for a beer after work next week – we’re keeping the list of names short so that it’s not too overwhelming. Brian is going to drive me there and home.

Hopefully between these three steps (and I really am going to try to make a better effort at keeping in touch, also), my current mood will stay improved as it is, and maybe get even better as I get into the hang of the whole crawling out of my shell thing. It’s doing so much better already that I’ve only cried about three profound things in this post.

(No, not really). . .

23
May
10

A Granola Bar, a Little Whine, and Now . . .

It’s not fair!

I want to see Emily Rose dance the Sugar Plum Fairy. I want to see her graduate. I want to see her become a professional ballerina.

I *might* see the first; the last is probably right out, especially if she goes to college first.

Why do I have to have cancer? There’s so many things that I want to do. I want to go back to school for a Masters at least in literature, and maybe history. I want to fill my house with quilts I’ve made as well as give away a whole bunch. I want to knit my own wardrobe. I want to bead beautiful jewelry and have plenty of occasions to wear it. I want to keep learning to play the mandolin. I want to do some voice training, so I can at least hear the ghost of the voice I might have had if I’d had training when I was younger. I want to get back into shape (if not the shape I was in at 17, at least the shape I was in when Brian and I got married). I want to read so many more books. I want to play with the friends I’ve already got, and make new ones to play with. I want to travel. I want to get to know my nieces and nephews on both sides of the family, and get to know *their* kids. I want to continue my job where I left off, taking more responsibility for the event planning, and getting to know more about designing websites. I want to touch people’s lives, and be there for them the way so many people are being there for me in my time of need. I want to play with my cats and dog. I want to love my husband and spend a longer rest-of-my-life with him than it looks as if I’ll get.

And this is how I’m feeling 6 days after getting such excellent news on Monday. Guess it’s a good thing it wasn’t bad news!

OK, now that I’ve gotten that whine out (and had a granola bar), I feel much better. Don’t worry, Ma, I’m doing fine now.

21
May
10

Is Talking to a Person With Cancer Really That Hard?

I read an article the other day that was written by a woman who has been through breast cancer, and a recurrence of breast cancer.

The impression I came away with is that there is nothing you can say to a cancer patient that is going to go over well.

For heaven’s sake, don’t talk to them about how they look – if you think they’re looking poorly, don’t let on, because you’re likely to get “Well, of course, I have cancer, so I’m not going to be looking my best”; but if you complement them on how well they’re looking, they’re going to be upset, as if they think you don’t believe they have cancer “Well, thank you, but I feel like crap on the inside”.

Whatever you do, don’t mention either survivors or non-survivors – non-survivors remind them where they might be headed, and survivors remind them that they might not make it.

And who cares about what you’re feeling about them having cancer? Are you devastated to know your friend has cancer? Well, suck it up, because those cancer patients don’t have time to worry about you, there’s only room in there for what they’re feeling.

And don’t bother to send flowers or cards if all you want is acknowledgment of your kindness and generosity – cancer patients can’t make that kind of effort to say thank you for it.

Aargh!

Can you tell that this article rather set me off?

I’m sure that at least some of the author’s experiences warranted the kind of selfish, cruel responses she advocates, but were most people really being stupid as well as well-meaning? Probably not. I myself have run into a couple instances where someone deserved a cut, which I mostly avoided by responding kindly to their intended nastiness; but it was with people I didn’t know well, and at least one was a competing cancer patient who felt I was getting too much attention, and her not enough. I seriously doubt whether the people that this author writes about really were trying for glory by giving her flowers, or karma by telling her that they were so upset by her news that they were having trouble sleeping.

I have experienced the “Pity Eyes” the author refers to, but usually only from people who don’t know me well enough, or aren’t comfortable enough with mortality that they have no idea what to say to someone who’s just announced that they have cancer (for the xth time, even). There are times when those looks make me feel like the “Already Dead Julie”, but usually I handle them the same way that I handle the more confident people who express their shock/sadness/grief that I am back in the cancer saddle; with a smile and a thank you for the heartfelt wishes.

Because even those people who try to make me feel better by talking about how well I’m looking (and currently, other than being very bald and very tired, I *do* look pretty well), or who remark on how tired I look some days, have an unwritten text of “I hope you’re feeling well, and if there is anything I can do to help, just let me know.”

And the people that I have to comfort about me having cancer? They remind me how much I’m loved and cared about – anyone who is getting a hug from me is also giving me a hug.

How sad to live in a world where you perceive everyone in it for what they can get out of it – I know there are people like that in the world, but I guess I’ve made the choice not to surround myself with such people, but with people who are genuine and caring, even if they don’t always know what to say. No doubt the author definitely had some unpleasant experiences, some of which were brought on by jerks; but I suspect at least some of the bad experiences were driven by her own perceptions of what she thought they meant.

Being a cancer patient can be an all-consuming lifestyle, especially when you can’t just go driving somewhere whenever you want. But even if it is more of your life than you want it to be, you’re still human, and it doesn’t remove the basics of etiquette from your list of how to treat people. Is someone being a jerk? Feel free to let them know it. Is someone being awkward in expressing their feelings about you having cancer? Give them a break and take the behind-the-scenes message of “I care, but I don’t know how to act or what to say” to heart. Having cancer doesn’t give you the right to be less than human; or give you the privilege of taking your anger out on some poor unsuspecting sympathizer.

But if you are in it just for the glory, I’m sure there is someone out there who will be glad to let you have a ride on their cancer wagon ;-}

14
May
10

My Least Favorite Rollercoaster

Well, one of the topics we discussed with Dr. Medici on Monday was progress scans on the chemo regimen. He said that it had been nearly 8 weeks, and since we were rescheduling the chemo, why not do them this week?

I was floored, as I understood that scans happened every 3 months – Brian was under that impression also, but he said he remembered hearing 2 months originally, but then everything he heard after that was 3 months.

Apparently we were so shell-shocked in the first meeting with Dr. Medici, just finding out that the tumors were indeed cancer, that what we missed/got confused about is that with a new chemo regimen scans are performed at 2 months, and then each succeeding 3 months as long as you’re on that regimen. And once you switch to a different chemo regimen, you have a scan at 2 months, then each succeeding 3 months. The tricky part is if the 2-month scan shows that the disease is progressing, you get switched to a new regimen, so you’ll have a scan in another 2 months.

At any rate, I jumped at the chance to have scans 4 weeks earlier than I was expecting, because the waiting is the hardest part (how petty of me ;-} ). So I had a scan on Thursday morning early.

Late Tuesday afternoon, his nurse called with the results of my CA 15-3 tumor marker blood test results: the number was down by nearly half – excellent news, yes?

Maybe. There isn’t a specific correlation between the amount of tumor marker in the blood and the size of tumors that is true for every person. For instance, when I had my recurrence, I had a tumor that was a little larger than the largest of the original tumors, and my CA 15-3 was somewhere around 9 or so. We did not check my tumor marker with the first set of tumors, since I had the surgery before I ever met with the oncologist, so I can’t say what it was at that time. But 9 is a perfectly acceptable “normal” level, one that an oncologist would expect means there is no tumor.

My prior tumor marker level at my latest oncology followup was 10 (I believe that was in July, but it might have been November, I’ve lost track of specific dates). And when we measured it at the time of diagnosis in March this year, it had soared to 1622. Knowing that there’s at least 1 tumor of nearly 4 inches diameter, other, smaller tumors, and multiple lesions on the liver, that seems to indicate aggressive growth in a short timespan.

But does the halving of the tumor marker mean that the tumors themselves will be halved in size? Probably not, although it is likely a good indication that the chemo is having some effect on the cancer. Dr. Medici says once we get a few scans and tumor-marker measurements, we should be able to figure out *my* personal marker-level-to-tumor-size correlation. It would be awesome if it was 1:1.

So why the rollercoaster?

I’m still adjusting to the idea that I have a terminal disease, which is pretty depressing.

Yet the hope that springs up when I’m told that the tumor marker is down is hard to repress. If we knew what that *meant*, it might be that I have every reason to hope that there has been significant progress; it also might be that it only means that the chemo is good at killing off the tumor markers in my blood, but not good at killing off tissue-bound tumors.

But of course, statistics don’t lie. It’s just that you never know where your position in the stat table is, until something actually happens.

So I’m trying to maintain a balance between hope and statistics – it’s a thin line, and it’s hard to keep your footing.

We’ll find out Monday what the results of the scan are, and there’s 2 out of 3 chances that I’ll remain on my current regimen – if there is progress in shrinking the tumors, or if there is no change in the size, I’ll continue as is; but if there is growth, we’ll be switching me to a new regimen.

Dr. Medici will hopefully have the results soon enough this afternoon to be able to make that decision, because if I’m continuing the same regimen, I will have chemo on Monday. If it’s changing, I’ll have chemo Monday only if he is able to get the new drug in on time.

Hate it or hate it, you gotta love chemo when your life depends on it. . .

08
Mar
09

Prisoner of . . .

Arthur & George, by Julian Barnes, pg 198:

“Some prisoners counted off each day until their future release; George could only get through prison life by treating it as the only life he had or could ever have.”

When I read that, it felt so true. I guess I’m really a prisoner of my own mindset about having cancer again, but inside me, it feels as if the cancer itself is holding me prisoner.

I miss (!?!) the first time I had cancer. I was able to approach it with a sense of adventure – not that I was enjoying having cancer, more that by approaching it with humor and as if it were a once-in-a-lifetime experience I was able to get past the fear and worry that were always there at the bottom. I do believe that it helped me reshape my ideas about what is important in life, aided by the book The Four Agreements by Don Miguel Ruiz – and as I’ve said before – if you have thoughts about wanting to change your life’s direction, *don’t* wait until you have cancer to do so.

Because I have so withdrawn into myself this time, I’m not able to find as much humor in it as I did before. Even though the prognosis really isn’t any different than the first time around, I haven’t wanted to discuss my experience this time, and I am more of a room with a closed door.

I have been turned off my support group this time by an influx of new people who complain about coming to a group and hearing all the stories of those of us who have recurrences or metastases – I truly sympathize with people who are facing this for the first time, and especially at a lower stage of disease it is hard to hear about someone who was at their stage and had a recurrence, no matter how short or long a time after their course of treatment was done; but how do you think it makes those of us feel to be looked at as a source of horror? It hurts, it starts us in our own feedback of negative emotions, and for those who have Stage IV, I can imagine it being pretty devastating.

And for those one or two people who have told me to “suck it up”, I say, “fuck off”. Even having cancer yourself doesn’t give you the right to say that to me. I will handle it in whatever way I best can, and if right now it is by withdrawing into myself, and not making contact with everyone I know, then that is how it is going to be.

For those of you (the vast majority of friends and family) who have offered me so much love and support in spite of my state of being incommunicado, thank you for understanding. I will reach a point where I find my mojo again and am able to reach out again – it just takes time.

I came across this post the other day, and it is a fairly accurate description of how I feel in general right now. If I Only Had a Brain

01
Oct
08

October 1, 2008

Revisiting my post about optimism vs. pessimism, and the benefits of having a positive attitude:

I’ve been thinking about it since then, and what constitutes pessimism and optimism.

I ran across a blog post by Donna Trussell called Cancer Is So Limited? I Beg to Differ. I laughed out loud – she is a good writer with an acerbic sense of humor. I also thought “This is a very angry woman”. Reading later posts confirmed that in my mind.

Cancer makes you angry. Call it one of the stages of grief, call it a reaction to fear, call it stress releasing itself in emotion; anger it is. Cancer makes you feel a lot of emotions, most of which you’d rather not feel – fear, grief, anger, sadness, isolation, despair.

With Breast Cancer Awareness month upon us, you can’t turn your head without bumping your nose into pink products, billboards, news articles/videos, e-mails, and yes, blog posts, most touting the message to *do your self-exams!*. But even the media, for all that it wants to promote the “look at the pretty survivors, you can too!” idea, cuts the message with harsh ingredients, like the video I saw today on CNN.com called “Help for Cancer Victims”.

If that little word “victim” doesn’t make a cancer patient despair, then it will probably make them angry.

And this is the thing about optimism and pessimism – anger is not the opposite of hope. Both hope and anger are on the side of not being a victim. If you can’t feel warm and fuzzy about having cancer, get angry! Don’t let cancer victimize you, and don’t let the “positive attitude Nazis” victimize you either. You don’t have to feel positive feelings about getting cancer, fighting cancer, surviving cancer. All you have to do is get through it, and if getting angry helps, be angry.

It’s what you do with the anger, though, that counts. If you use it to focus on the fight, and on survival, anger can be a positive emotion and a positive force. If you use it to bludgeon the people who want to help you, then it might destroy you if the cancer doesn’t get you.

I can attest to cancer causing one to be angry – when I had my worst fears confirmed by the biopsy results this August, I was furious at the surgeon who didn’t get it all, at the doctors who decided I didn’t need radiation the first time, at the failure of the chemotherapy to kill off the remaining cancer cells, at having maimed my body for nothing.

But after allowing myself to feel the anger, the sense of unfairness, the “why me” (shit happens, that’s why), I chose to let go of these feelings, and focus on being me. I still don’t see the positive attitude that others perceive in me – I’m just living my life, rather than living my disease. The same things that made me laugh before make me laugh now; the things that touched my heart before touch my heart now; the things that made me angry before, well, some of them still make me angry, others I’m learning aren’t so important.

In her latest post, The Stupid Cancer Show, Trussell writes about the lies one hears as a cancer patient. One of the types of lies is “other cancer survivors lie to you”, which would also mean that they’re lying to themselves.

“Cancer is the best thing that ever happened to me.”

Some of the people in my support group talk about how cancer turned their lives around – and I think they really believe it, rather than grasping at any frail straw that puts a positive spin on an extremely negative situation. I mean, they ought to know if they’re in a better place mentally, emotionally, and spiritually.

Is it the best thing that ever happened to *me*?

No.

On the other hand, I can’t deny that it has made me re-evaluate priorities in my life, made me less inclined to take things for granted, helped me learn to connect with people better, and work to eliminate leftover destructive behaviors that I haven’t conquered yet. Will this last as I come out the other side of the Cancer Fun House? I certainly hope so, I plan on it, and I’m going to do my best to make it so. I feel sad that these positive changes took getting cancer to bring them on. If I were you, I’d just cut to the chase, make those life changes you keep thinking about, and skip the cancer.

And it definitely is not the best thing that ever happened to me – that, in one word, is Brian.

So I will continue to strive for the positive attitude spectrum, because it suits me, and who I want to be – not a shill of the cancer establishment, not a self-delusional cancer victim, not the me-with-cancer or the me-the-cancer-survivor, just me. That will no doubt include occasional bouts of anger, grief, and other negative emotions; but also laughter, joy, and love.

When I want to feel inspired and hopeful, I will visit Cancer Cannot Have Me.

When I need to come back to earth (or for a good laugh), I can always visit Donna Trussell or The Stupid Cancer Blog ;-}

17
Sep
08

September 17, 2008

Today I’ve been thinking about optimism and pessimism, in general as they relate to having cancer, and specifically as they relate to *me* having cancer.

Friends and family have told me, especially since the recurrence, that they are impressed with my positive attitude in the face of having cancer (thank you!).  I guess that it comes across that way, as a positive attitude, or optimism; but in my own head, I’m just living my life the same as I always have (with the exception of a lot more doctor appointments than usual), and dealing with a bad situation in the only way I know how, of facing it head on, and ruling it, rather than letting it rule me.

Historically, that was not the way I dealt with bad situations, and I’ve seen first-hand how escapism, denial, recreational drugs and alcohol, and a very pessimistic outlook on life, myself, and society made my life worse as I avoided dealing with problems, and merely wallowed in my own “helplessness”, ruled by the problem.

But I will concede that not being pessimistic is in its own way a form of optimism.  In the sense that I believe that statistics on breast cancer are in favor of me surviving, and that treatment will (eventually!) control or even rid my body of cancer, I am falling on the positive side of the optimism/pessimism scale – that I believe the glass is half full, rather than half empty.  I certainly have met people who have heard the same statistics, but still believe that their stage 1, non-metastasized cancer is a tragedy, and is a death sentence.  And because they believe it is a tragedy, it is.

I don’t mean to make light of anyone’s fear of cancer or fear of death – cancer is scary stuff, and I have had times when I was very scared, sad, depressed, worried, and wondered if I would survive.  But again, by not believing it is tragic, it isn’t tragic for me.  I also don’t mean that I believe that by being optimistic or pessimistic one sways whether or not one survives; I just mean that we experience cancer and its treatment the same way we experience life.  If we think of life as scary and bad, we will certainly perceive our experience of it as scary and bad.  Some people’s lives really fall into the scary-and-bad category, and my heart goes out to them; but a lot of people (me for one, at least in my youth) look at their lives and see unhappiness, believe the world is out to get them, and live their life accordingly.  And if we think of cancer and its treatment as scary and bad, it will be.

(I could write a whole ‘nother post about how I moved from a pessimistic world view to a non-pessimistic world view – the short version: Thank god for Brian, and for my own choice to start facing life directly and with a different attitude.  I also credit “The Four Agreements” by Don Miguel Ruiz for helping me reshape my life by reshaping the way I perceive my interactions with others.)

But when does optimism become “irrational exuberance”?  When is it denial and/or escapism?  Even though there are definitely books and blogs and websites, oh my, that claim that you can beat cancer with a positive attitude, studies have shown that this is *not* the case.  Does that mean that you shouldn’t have a positive attitude, that it is simply denial to be optimistic in the face of a cancer diagnosis?

Mayo Clinic debunks the cancer myth that:

A positive attitude is all you need to beat cancer.

Although many popular books on cancer talk about fighters and optimists, there’s no scientific proof that a positive attitude gives you an advantage in cancer treatment or improves your chance of being cured.

What a positive attitude can do is improve the quality of your life during cancer treatment and beyond. You may be more likely to stay active, maintain ties to family and friends, and continue social activities. In turn, this may enhance your feeling of well-being and help you find the strength to deal with your cancer. A positive attitude may also help you become a more informed and active partner with your doctor during cancer treatment.

*********************************

So I guess I will choose to keep landing on the positive-attitude/optimistic side of the bar, even if it feels in my head and my heart as if I’m just being me.  And I will take inspiration from the women I know with stage 4 metastatic cancer, who face life, and death, with optimism and not as if it is a tragedy.




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