Sunday, August 05, 2007

Missing In Action

My deepest apologies to you all for the unscheduled lapse in blogging and personal training. I've got some medical crap going on. For one thing, I'm going through a brutal withdrawal from Cymbalta. It's pretty miserable, even though I'm tapering the dose and using citalopram as a crutch.

But I've also got a bigger worry. The joints in my right thumb are shot to hell, swollen and painful with the tendons shrunk so tight that I've almost completely lost the use of the thumb. When I mentioned this at the oncology clinic in June, the resident shrugged it off, said it's normal for chemo to damage tendons and cause stiff painful joints for a while.

But this is something else, and it's getting worse. I showed it to my private GP last week, and she said I should definitely get it looked at by an orthopedist at Our Lady of the Damned. There is a painful inflamed swelling that she said could be a ganglion, or maybe arthritis, and it needs to be x-rayed. What she didn't say but what I know is that it could also be an osteogenic sarcoma, a cancer of the bone and connective tissue.

I should be getting an appointment for my routine six month CT scans any day now, and that will be followed by an oncology clinic appointment a week or so later to discuss the results. But there's no way I can penetrate the system to be seen before then, so I'm left to stew in my anxiety, and it's really kind of knocking me for a loop.

I know, I know, it's probably nothing, maybe I won't have to have my right hand amputated after all. But it hurts, and my thumb is almost paralyzed, and I'm scared shitless. Well, wouldn't you be?

Anyway, in the temporary absence of real live blogging, I hereby offer you some old previously unpublished stuff in honor of the upcoming one year anniversary. It might be easier to read it in three or four sittings, it's kind of longwinded and overwhelming.

These are a series of emails I sent to "the painter" last August, almost a year ago. I'm omitting his replies for privacy reasons. These were written during the week after my second biopsy, right before I got the results. At the time, doctors suspected that the tumors in my chest might be advanced lung cancer, and I was looking at possibly having less than six months to live. It was a rough, raw time in many ways.

August 24, 2006
Dear Painter,

What does this mean, when you wrote to V: "Liz gets pretty down at times, and it sometimes comes out of my hide, but I can take it, especially if it helps in the long run."

Comes out of your hide? How so?

I mean, wouldn't it be maybe be a little different if you would be kind and tender and compassionate instead of bossy and angry and mean when I'm feeling vulnerable and upset? I only lash out at you when you're yelling at me, withdrawing from me, or trying to control me. When all I want is kindness and understanding.

I really hate this feeling that you talk to your friends about how I'm the difficult patient, the crazy unstable one who "gets pretty down at times" while you calmly patiently heroically stand by and try to deflect my "fits," all supposedly for my own good. Do you ever tell them about how you yell at me, or walk away from me when I'm crying?

I hate being the one you need to go dancing at RNB or WR to get a break from. It breaks my heart, it hurts so bad.

Jesus I hope we can work this stuff out before it's too late. I wish I knew how to get through to you. I need so much to feel like you're on my side.
Not just my body's side, but my soul's side. I wish that you cared as much about my hopes and dreams and fears and wishes and feelings as you did about which hospital I go to or which medications I take. That you cared as much when I cry as you do when I cough. I just can't understand why asking for these simple, human acts of friendship instead of just purely physical caretaking is "taking it out of your hide."

I'm sorry. This whole thing just really hits me the wrong way. So what am I supposed to do, to avoid "taking it out of your hide"? Just never feel down? Or never share it with you if I do? What? Tell me what you'd prefer I do when I'm feeling sad or hopeless or frightened. Call some anonymous 800 number? Wait for next week's therapy appointment? Take sedatives? Go to the ER for 9 hours, while you go dancing at the RNB? What? Tell me where else to turn for genuine emotional friendship, if it's so damn hard on you when I turn to you. I'm serious, I need to know.

Love,
-L.


August 24, 2006
Dear P:

Of course I understand your need to get away from it all, to have fun, to enjoy the music, the activity, the noise, the interaction; to flirt, to feel happy, to revel in the friendship and warm closeness and companionable pleasures, to feel the powers of your own sexiness in the arms and smiles and appreciation of other women. I know that need very well, because it was mine for so many years too.

I feel like a total selfish asshole if I tell you that it stabs me in the heart, hurts me to the core, when you go dancing while I'm home sick. You probably resent me for trying to make you feel guilty, and maybe you should. But how much longer can I stuff my feelings, before they explode later and end up doing more harm? To us as a couple, and to me physically. Maybe it's already too late, the damage is done.

But I don't know what else to do except be honest and say: this hurts me. It really hurts me bad. If my saying that destroys your love and respect for me, then I guess that's the price I have to pay.

It wouldn't hurt so much if you were just out having dinner with friends, going to art museums or movies or concerts, hanging out with [your son], enjoying that kind of interaction, having that kind of life. But dancing! I know all too well that dancing is a very different way of "interacting." The dressing up, the looking good, the sly smiles and sexy hips and subtle eye contact. I know it all too well.

And part of what hurts me so much is that dancing was once MY great love, and now my illness has completely robbed me of it, possibly forever. Now it's all yours to enjoy, happy and free of remorse, while I sit here feeling hurt, bereft, left out, trapped like an impotent prisoner in my own hideous unhealthy body, stuck with my embarrassingly painful emotions, drowning in my own bleak despair and unattractive self pity. It hurts me worse than anything you can imagine, that this is the kind of break from me you choose. And I think you know, or at least strongly suspect that it hurts me. But you choose it anyway, without apology.

I do understand that all this is very hard for you too, that because of my illness you've suffered losses of your own dreams and pleasures, that you're also grieving and mourning what could have been, that you're uncertain and stumbling in your own pain, feeling helpless and lonely and angry and scared.

I know that you have needs of your own that often don't include me. And I know that you need more joys in your life, things that I can no longer provide you, even though it nearly kills me to admit that horrible truth.

So what else can I do but say ok, fine, go have your fun. But then I can't help it that even though I wanted you to be happy, I end up sitting here hurting so bad, hating myself, wishing this damn sickness had never happened, wishing I'd never met you, wishing my heart didn't ache so bad, wishing I just had somebody somewhere I could talk to who would listen and care and understand my pain, while you're out dancing and having fun.

I don't know the answer. I understand how you feel and what you need, but that doesn't change how I feel. My immediate tendency is to want to pull away from you, to withdraw, to close off my feelings and shut myself down so I won't have to feel any more pain. Maybe there's a better way, but I'm not able to see it right now. Maybe a counselor could help me see it. I don't know.

Sometimes it all just seems so goddamn impossible, so hopeless, and it's at these moments that death starts to look like the best answer, a welcome relief to me. I mean, sometimes I just want to get it over with quickly, not just to spare myself all the inevitable suffering, but so I can stop inflicting suffering on other people, especially you, but also the kids.

At least the kids are both taking this opportunity to reach out and try to really get to know me, we're dropping all the barriers and talking to each other in honest open ways that we never dared before. It's awkward sometimes, and hard but also incredibly wonderful. It's been really good for all three of us to have this experience, and I'm glad we've taken the chance to risk it. I wish I could have that kind of authentic relating with you. But wonderful as it's been I know if it drags on too long, it's going to become too big of a stress for them too, and that kills me, that I'm hurting them now. Hurting them, hurting you, hurting me. Please, please, somebody make it stop soon! For all our sakes.

I'm not much for praying, but I can't tell you how often I've prayed to die soon and deliver us all from this horrible miserable hopeless mess I've brought on us.

I hate it when people talk about how "strong" or brave I am. I'm not. I'm only going through the moves, taking the next step, enduring whatever happens until I can't any more. Trying to put on a brave happy face to make everyone around me feel better. The truth is I'm a lot stronger at enduring physical pain than emotional pain. And this hurt and loneliness in my heart, this desperately needing a friend that I'm feeling right now tonight is getting pretty close to my limit.

I hurt, I need help, and I honestly don't know where to turn. I just don't know.

I hope you had a safe trip. Let me know that you made it home from the dance safely.

Love,
-L.



August 25, 2006
Dear P:

I'm just too vulnerable right now, my emotions are too raw, and I really need to put up a wall and protect myself. I can't trust you to not hurt me. I can't trust you to not blow up at the hospital, fly off the handle, lash out at me, be mean to me, refuse to listen to me, yell at me, try to control me, get mad at my feelings if they aren't exactly what you wanted me to feel. I need to protect my raw vulnerable scared hurting self. I have too much other shit on my plate right now to handle the hurt that's been coming from you as well. All this loneliness and crying is just not good for me.

That's part of why I don't want you to go to the hospital with me for the biopsy result on Tuesday. Because I need to be steady as a rock, I need to be strong and open, I need to be able to feel whatever emotions I feel in response to the news without worrying about you getting mad at me, or trying to take over. I need to ask questions without being interrupted, and maybe make decisions you won't like. I can't trust that I can be and do those things with you in tow, always ready to go off at any time like a loose cannon if the hospital, or the doctors, or the nurses, or I, make you mad.

It's probably best for us to take some time apart for a while. I'm not talking about breaking up, just maybe having some space between us for a while, a few weeks, whatever. Maybe until we can find a counselor and get some help. Or until I'm not so raw with hurt. You can have a break from me, get your fun noisy life back, and I can try to build some semblance of a new life, since I've lost two of the things that once meant the most to me, dancing and weight lifting, the passions that gave me strength and pulled me through when times were bad.

I need to find something new that I can do to bring meaning and passion and purpose back to my life, however short it may be. I need to keep myself as much as possible in a strong, serene, positive state of mind. I need to not be distracted by fighting with you, fending off your anger and hostility and negativity, and constantly feeling the emotional fallout from it. At other times, I could have been more independent and stood up to you and stood on my own two feet. I could have been ok with whatever you dished out, and not been broken down by it. But now I can't, and I'm tired of being knocked down.

So let's take some time apart. You stay there and paint and dance and do your thing, and I'll do my best to try to rebuild my own shattered positivity and inner strength and determination. I'll do what I can to find somebody I can talk to, who will listen to me without hurting me. I'd prefer a loving caring friend, but if I have to pay a professional, it's better than nothing. If I have to pay somebody to drive me in for more biopsies or treatments, I can do that too. If you can find a couples counselor and are still willing to do that, I'm willing to go and give it a try. I'm just not willing to go on hurting like this and feeling so lonely, lonelier when I'm with you than when we're apart.

Thanks for letting me know that you had fun and got home safely.

Till later,

-L.


August 26, 2006
P:

Yeah, I'm well aware that being apart is as good for you too, if not better. That was a disaster, having you just sit here for over two weeks doing absolutely nothing day after day except resenting me and getting mad at me. I didn't even need you to be here the whole time, other than the driving to & from biopsies. I'm not exactly an invalid in need of a full-time caretaker yet, and you don't seem willing to offer me emotional support, so there wasn't really any reason for you to stay here that long. I'm sorry I didn't put my foot down and make you leave sooner. I won't ever let that happen again.

I'm also pretty well convinced that we won't ever really get married. I understood that we probably wouldn't when you told me you hadn't told [your son] we were "engaged." You tell me you have a good relationship with him, but you've also made it clear that I am not going to be part of that relationship. After a year I've only seen him once, for a total of 3 minutes, even though he lives a few miles away, and never met anyone else in your family. So again, I understand that though your mouth says one thing about marriage, your actions and your deepest heart are really saying another: I'm not going to be part of your family.

It's all talk, just like building a house here was all talk. I'm ok with it, we are nowhere near able to get along well enough to consider marriage at this point anyway. I just wish you would be honest about it, instead of pretending it's going to happen.

I keep wondering why you keep going on and on about how horny you are, working it into every email conversation no matter how out of context, irrelevant, or inappropriate. What's up? Are you trying to tell me that you're getting sick and tired of how my illness has made me sexually unavailable to you? Believe me, I'm painfully aware of that and it makes me really sad. You don't need to keep reminding me or pressuring me. I
feel like enough of a failure as it is. But please be honest and direct, that's all I ask. If the underlying message is: I'd better shape up and put out or you're going to have to start looking elsewhere to get your needs met, please just come out and say so directly rather than all this weird out of place sexual innuendo. Thanks.

I hope your painting is going well.

Love -L.


August 28, 2006
You say:

"I'm just not in any hurry to make any life altering moves, be it marriage, moving, building or anything else. That'd be stupid at this point."

Wow, that's the exact opposite of what you've been saying in the recent past. So there's been a change of heart? Why?

I'm having a really hard time feeling close or connected to you. We seem to be so very alienated, but not talking about it, making small talk pretending nothing's wrong. There's a strange distance but when I try to talk about what's really going on you say I'm being "too harsh." And you suggest maybe I'm just having a "slump" like there's nothing really wrong between us?

I have no idea what our relationship is any more. A few weeks ago you enthusiastically wanted to get married right away; now it's been moved to the back burner because getting married sooner would be "stupid." What caused this sudden change of heart? I can't help but wonder what was up with all the yelling and anger and impatience and blame you were directing at me when you were here. And the way you don't give a flying fuck how I feel about you going dancing, you've let me know loud and clear you're going to do exactly as you damn well please and I can just stuff my damn hurt feelings up my ass. Will you please be honest and tell me what's going on?


It's true, I'm feeling much better since you left. A lot is probably emotional, the body mind connection. I like feeling strong and independent and peaceful again, it's good for me to get up and move around, I don't like being sent to bed, bossed around, or yelled at when I cry. Those two weeks you were here left me feeling so hurt and distant from you. I desperately needed some time to get back on my feet, back to being myself so I can be strong enough to face the biopsy results tomorrow.

I feel much happier now that I'm spending time around people who are kind to me instead of yelling and angry. The inflammation has gone down, the edema improved. This doesn't mean the underlying disease is cured, it just means my body is relieved to not be so stressed and crying all the time. I think it's easier to heal when I'm not so stressed.

Your words say one thing, that you love me and that I'm the most important thing blah blah blah. But it was too much to ask you to stop yelling at me, to just be kind to me and not keep hurting me? I don't understand the discrepancy, but my experience has been that actions speak louder than words.

-L.


August 28, 2006
Dear P:

Sure, I get frustrated with the public hospital system. But I guess I just deal with my frustration in a different way. While I'm trying to concentrate on getting medical care, in the immediate moment, I just try to focus on being calm, positive, enduring, staying focused on how to move to the next step.

When things got rough, the waits were long, the system confusing, I needed so much for you to just reach over and calmly say something kind and encouraging, like Hang in there, you're doing great, we're going to get through this, it's going to be ok, I'm right here with you. But instead you seemed to be putting all your energy into negative stuff like looking for somebody to blame and resent and criticize, ranting and fuming and occasionally exploding, being so intensely angry and bitter at the hospital, and also at me for not letting you take me to a private hospital. I wished so much that you would just set the anger and blame aside until a later time, and while we were there in the thick of it, just be there with me.

And I want to be there for you too. It was stressful for both of us, I know, but your anger made it much worse for me. I ended up feeling alone, and so guilty for not being able to afford insurance.

As for the yelling, maybe you're not aware of how often or how much you raise your voice when you're being stern, controlling, authoritarian, angry. Maybe it's just your way of reacting when you feel anxious and helpless, I don't know. But it doesn't feel very good or comforting to me. I wish that instead of getting mad, you could just talk about how you feel, and I could be supportive or comforting or whatever you need.

Thanks for your response. It makes me feel better. My heart is feeling very sad about the way things are between us right now.

I love you,

L.

This was the last letter I sent him before going in for my biopsy results alone the next morning and being diagnosed with lymphoma. The next night he went out dancing again, while I sat at home and cried, and hated myself for doing it. Damn, what a nightmare. What a relief to be a year into the future, past all that.

24 Comments:

Blogger Molly said...

What were you doing hanging out with my husband anyway? And how was he managing that 3000 mile commute every day? Soop is definitely a better deal.

10:59 PM  
Blogger gennimcmahon said...

About a year after my dad died, his hospice nurse, who was my co-worker and close friend, found out that her father was terminally ill. Someone suggested that I go talk to her as she sobbed in her office, since I had lost my dad and that sounded to those who feared the weeping like a strong qualification.

So I went in, and I sat, and she cried, and then I said, "Damn, that sucks."

And we both started laughing. Because there is nothing else you can say, really, when things are shitty that doesn't sound stupid. So it became our line for when things were crap and the other person felt totally helpless.

So, I pass the bypassing of foolish statements on to you when I say, Damn, Liz, that sucks.

I will keep my fingers crossed.

11:34 PM  
Blogger Lisa said...

So sorry to hear you've felt so poorly. I'd be scared, too, but I hope, so much, that the x-rays bring you good news. wish I could create some cheer for you! at least I'll second gennimcmahon & sympathize: that sucks, big time.

11:55 PM  
Blogger doctorval said...

I hope your thumb is nothing. Best of luck with that. And you're better off with Superman.

12:10 AM  
Blogger Schmutzie said...

I've got good thumb thoughts coming your way.

2:05 AM  
Blogger debinca said...

Hang in there Liz, take care of yourself as you know best how. Thanks for checking in and letting us know whats up. Prayers and corn nuts coming your way!

again thanks for telling us about the book 'why does he do that' I am though, sorry you needed it!

Debinca

2:11 AM  
Blogger simonsays said...

Oh Hon. I am praying that your thumb issues will be something like arthritis, and the hell with men. One day, you will find one that actually DESERVES you.

5:38 AM  
Blogger simonsays said...

This comment has been removed by the author.

5:42 AM  
Blogger Rachel said...

Sheesh. He was such a maroon, and I wish I could kick his butt right now.

I know that there's no way you could think that your thumb isn't a Bad Thing, considering how I was reading compulsively about cancer when I got notified about needing follow-up imaging from my mammogram (wasn't anything). I'm sending good thoughts and moist heat (yeah, coals to Newcastle) in your general direction.

10:27 AM  
Blogger Beaweezil said...

I don't suppose there's anything to say that would make it better, would if I could. Just know that there is positive energy coming your way and this guinea pig doesn't mind hanging out for a while. Ready when you are.

10:33 AM  
Blogger funambulator said...

Aw, Liz, I'm sorry your thumb is hurting! I hope it's nothing, and I hope your scans go well and are as hassle-free as possible.

11:40 AM  
Blogger saraarts said...

Fingers crossed for an incredibly boring, trivial, nonthreatening diagnosis that will require nothing more of you than that you pop a couple of aspirin and not open any jars for awhile.

Hope, hope, hope.

12:46 PM  
Blogger Stacey said...

It's a relief to hear from you about how you are doing, here's sending hope your way that the tests reveal good news.
It made my blood boil to read your words and infer the responses. I'm glad you got out of that situation, and regretful that you were dealing with that at the same time you were dealing with all of the rest of it. You deserved better, and I'm sure you know that better than anybody. I know you said in a letter that you hate people telling you this, but you are so strong. You are an inspiration.

1:51 PM  
Blogger MissPrism said...

Hope the thumb's OK.
You are inspirational.

4:26 PM  
Blogger gingernh said...

Hi, Liz-
I know of you from the old Spike days on the Landscape Design Forum. I have been reading your blog for some time now; got a heads up re your situation from tony/inkcognito.

My family is shot through with cancer--father died of brain cancer, mother has multiple myeloma, husband has prostate cancer, sister has metastatic breast cancer, best friend-kidney cancer, and more . . . always waiting for the proverbial shoe to drop, sword of Damocles. So I have a bit of a sense of what you are going through. My sister experienced a very similar pattern of behavior in her husband when she was diagnosed. He left her in the middle of her first chemo round-- a note on the kitchen table. Wounded her more than the cancer.

Anyway, I am writing to say that I truly enjoy your blog--you are inspirational, give meaning to my life -- and your delightful sense of off-the-wall humor helps get me thru the days. I tend get stuck in ruminations and need to be jerked out of them by hilarious writings like yours.

I have a gardening business here in NH; used to be a family therapist. Prefer gardening. I love your rose photography.

I have a Cardigan Welsh Corgi who is my stalwart. Glad you have your dog-beings with you.

If you want a New England holiday, contact me. Fall is a beautiful time around the Lakes Region--Lakes Winnipesaukee, Winnisquam, and Squam. I've got a spare room and two kayaks.

Best to you,
Ginger

9:38 PM  
Blogger Keri said...

Liz,

No words can heal heart wounds. As so many others have said, and you yourself know, you are much better off to have carefully cradled your heart and moved forward with your four-foots when you were not being properly respected and loved.

As for the thumb... prayers and love rushing your way. And I wish there was more that I could do...

11:51 PM  
Blogger Citygrrrrl said...

i read an excellent book years ago called "constructing the sexual crucible" it took me forever to get through. i'd read two pages and then have to ruminate about it. next night, i'd pick it up again, re-read those two pages and the next two, and ruminate some more.

the author came out with a "constructing the sexual crucible lite" because he found out so many lay people were reading the original book. i took a look at it and it doesn't come close to the original.

so if you want an excellent yet massive book to read about relationsips as you are waiting for your doctors appointments, i highly recommend this one.

ps. tight tendons suck. have them in my shoulder. nothing to do but move them and it hurts.

8:02 AM  
Blogger Professor Zero said...

Good luck with your thumb! And: my cat has been gone 24 hours, I wish he would come home!

Anyway: your mails look very like the ones I sent my abusive ex just a few weeks earlier. Except you are stronger and more direct than I - I was made far too many excuses for him and took far too much blame.

I'm so glad you escaped, and very impressed that you dealt with this and the lymphoma at once ... etc.

12:54 PM  
Blogger Irish Goddess said...

Self first. We can wait.

9:20 PM  
Blogger Professor Zero said...

P.S. still thinking about the mails. I sort of know what the responses were because I've written mails like that to my father and to an older cousin as well as to this ex.

What they *all* did was *so* like this, it is amazing: pick a time when I had some other problem, decide to be abusive to others on my behalf and to stress me out about how I wasn't getting treated well enough by [whatever, whomever] . I'd ask them to just be supportive and nice instead of controlling, invasive, and chaos-bringing, and they would then
say *they* were hurt because *I* was "being mean" to them.

My ex was the worst of these, or the most skilled - when it got to the point where he wasn't just being mean to others "on my behalf" but mean to me also, he could get me to cry, beg for better behavior, etc., and then he'd say this was a psycho attack and an "attention getting maneuver."

[Which was interesting, I've just realized, since he had a famous one of these of his own, which I won't go into here.]

5:14 PM  
Blogger momo said...

Dear Liz, I'm so sorry about your thumb and the pain in your hand. It is so hard to wait for appointments, results, and an end to the wondering.
I'm so glad you are no longer involved in the soul-sucking trap of expecting support from a person incapable of giving it to you. On top of everything else you had to go through, to read your words and hear the pain in them is so hard. And the dynamic is so familiar, it reminds me of the time I was under a similar evil spell by a charming, handsome, dancing, conrolling, untruthful SOB. As a buddy of mine would say, "you bettah off!"

5:28 PM  
Blogger Kit said...

My mom was successfully treated for a lymphoma twenty years ago. The past few years her right hand swelled up and sounds very similar to yours. I can picture it. The doctors tried treating for Arthritis and Lyme disease. Then they tried a diagnosis of Lupus which has been a better fit. She gets enzyme shots monthly from a chiropracter.

5:56 PM  
Blogger Bob said...

delurking long enough to send you positive vibes regarding your thumb and the 6 mo. review.

take care, you are an exceptional woman.

12:06 AM  
Blogger quixoticmama said...

Take care, Liz! *hugs*

7:20 AM  

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