Missing In Action
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Anyway, in the temporary absence of real live blogging, I hereby offer you some old previously unpublished stuff in honor of the upcoming one year anniversary.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
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.
August 24, 2006
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.
August 25, 2006
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.
August 26, 2006
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.
August 28, 2006
"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.
August 28, 2006
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,
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.