Tuesday, May 22, 2007

The Missing Weeks, Part 2

Last week I posted some emails I sent to friends and family during the weeks between my diagnosis and the beginning of chemotherapy, back in the days before I had a blog. Here is the next set of emails, written after chemo had begun. There's an obvious change in my tone: the breezy bravado and upbeat humor fade dramatically as the treatment progresses, and are replaced with a frustrating mixture of painful desperate cries for help and a numb defeated withdrawal that wouldn't let anybody near. I cringe now when I reread them.

As The Tumor Turns: The Train Wreck Episode
October 11, 2006

Greetings Gang Members!

My wise advice du jour from Cancerland today is: don't get cancer.

Between TWO #$!*%$ surgeries on Monday (the second time an emergency SWAT team of surgeons from the radiology department had to be rushed in to retrieve a 6" piece of guide wire that broke off during the routine mediport installation--the damn thing, giddy with its sudden freedom, took off on an unauthorized and potentially lethal joy ride through my vascular system, until they finally detained it and took it into custody from a large vein in the top of my right groin) and today's satanic 6 hour chemotherapy session, I feel about like I've been run over by a freight train. More than once.

Besides not catching cancer, my assignment du jour today is for everybody to drop whatever you're doing right this minute and go make a tiara for J. He is the world's greatest support person and deserves tiaras by the shitload. He spent 8 hours at the hospital with me today, and on Monday 14 hours. In between feeding me ice chips and beating the crap out of the unfortunate surgeon who broke the guide wire, he managed to find time to use his movie star good looks and smooth southern charm to woo the nice lady at Our Lady of the Damned Social Services (Celina--make her some tiaras too while you have those rhinestones and hot glue guns out) into finagling some financial aid so my $4,000 per shot Neulasta is going to be absolutely free! Totally covered! They had to use extra sedation, several burly orderlies, and excessive restraint to keep me from dancing the happy happy joy joy dance all over the operating table when I heard that news.

And finally, a few nice words about Our Lady of the Damned. The emergency room there is a total hell hole, filthy and crowded and disorganized with 9 or 10 hour waits no matter how dire your condition. The oncology clinics are a mess too, 4 hours waits that are hideous obstacle courses through rude incompetent bureaucrats, hundreds of infectious patients, not enough chairs, and clogged up restrooms. The first floor of OLD is like some kind of worst nightmare reality survival show.

But when you get up to the fifth floor, which is where the same-day surgery and chemotherapy departments are, it's like you're suddenly on a different planet. You have now entered a luxury resort zone. The nurses all wear halos around their heads and Nobel Kindness awards on ribbons around their necks. Their only goal in life is to gang up and make you as comfortable and happy and well as possible. They will go to hell and back to get you an extra pillow, nuke your tea, bring you some ice chips, hang out and reassure you if you're anxious, calm your worries and do whatever it takes to make you smile and relax. Chemo is given in a nice clean private room with a crank up bed, a tv that turns off, a window with a view, and a clean private bathroom. They bend over backwards to make the experience as easy and pleasant as possible.

I guarantee you, there's not a zillionaire on earth who gets better care than I've gotten on the fifth floor Monday and today (and for my two previous biopsies). I know it almost sounds like a cliché to say the nurses are the true heroes, but I can tell you in all honesty: I believe it weren't for the nurses, we would all be dead right now. So while you've got the sequins and glitter out, make a few tiaras for the fabulous fifth floor nurses too.

I haven't thrown up yet, I've been taking Phenergan every few hours to stave it off, but they say tomorrow is the day the big vomit fest is most likely to hit. Right now I just feel like total shit that's been through the ringer a few times and back. And I look like shit too. I barely have the strength to type but I swear of one more person says "Oh how cute, you' got your scary Halloween costume on a few weeks early!" I'm going to muster just enough strength to undo all their expensive orthodonture. Also in the TMI department, I have a nasty bitter metallic taste in my mouth, and my pee is bright pink.

So don't forget, boys and girls: make those tiaras, and whatever you do, refrain from getting cancer!

Tons of love,

Liz (aka Mom)

October 24, 2006
As The Tumor Turns: The Taciturn Episode

Dearest Gang Members:

I'm sorry I've been so lax about sending out updates, but I seem to be going through a quiet phase. It's a GOOD, serene, if slightly dazed kind of quiet phase though, not a bad tragic terrorized paralyzed quiet phase. The first week after chemo was pretty rough, but now I'm actually feeling almost well again, the evil side effects have subsided, the extra 20 pounds of edema have drained away, and other than a persistent low white blood cell count, all is well here in Cancerland.

Because of the low WBC count, my immune system is compromised so I can't go anywhere that I'll be around people and their quotidian germs. So, alas, no Wal-Mart for me! I have to go to the hospital at least twice every week for blood tests and oncology appointments, so I have to wear a grim looking surgical mask in the waiting rooms.

The first time I wore the mask, I couldn't figure out why everybody was being so unfriendly. Did they think I was the one with the deadly communicable disease? But then, duh, it occurred to me: they can't see me smiling at them, so they don't smile back. As you can see from the attached photo, J. fixed that for me.

Nowadays my entire social life revolves around bonding with other cancer patients in the waiting room. It's just as well because nobody else wants to sit around and discuss mediports and vomit for hours at a time.

Other exciting news from the world of malignancy: I think my hair is going to come out tonight or tomorrow. For the past few days my scalp has been feeling really sensitive and itchy, and this morning it was finally started coming out in tiny clumps if I pulled it. I think I'm about as ready as I can be. Stay tuned for baldie pix.

My second round of chemo will be Wednesday, November 1st. Until then, I'm just lounging around enjoying the heck out of not feeling quite so sick. I have an enormous appetite for really plain, simple, nourishing food, and a deep longing for a quiet, simple, peaceful life with zero stress, controversy, or major decisions. I don't feel much like reading or writing or talking; I'm oddly content to just sit by a sunny window all day with my dogs, knitting and listening to Mendelssohn. In other words, chemo has turned me into a potted plant.

So here we are, one round of chemo down, seven more to go; current score is one to nothing, with me in the lead. Go me!

Stay tuned till the next time the tumor turns.



No Title
November 7, 2006

Dear Gang Members:

I'll be frank with you: I am going insane. I mean seriously, deep depression, no more will to live type stuff. Cancer is bad enough, but add incarceration, isolation, loss of freedom and autonomy and strength and independence on top of that, and it's too much for me. I'm sorry. Something has got to change.

I survived my second treatment just fine on Wednesday; slept all day Thursday; Friday was brutal, hell on earth; I started to emerge on Saturday and even managed to walk downtown to the bank and back. Sunday was a bit better, yesterday I felt almost normal.

Except there I was trapped in the house with no life whatsoever. No one to talk to, no sense of agency or control over my days. I tried to be "a trouper" but all the forced passivity was too much for me. Depression swallowed me alive.

Last night after watching his tv for four hours, ignoring me all day, J. went to sleep at 8:30. And I went nuts. I tiptoed into my office so I wouldn't bother him and sobbed at my computer for ten minutes. But the claustrophobia of feeling trapped and housebound and all alone was so bad, I went out on the porch and sat in the rain and cold and sobbed out there for another ten minutes. I hated my life, hated myself, hated the whole thing. I was ready to call it quits.

But then suddenly I said: Fuck this shit, there is something totally WRONG with this picture. And maybe it's not me. While J. slept, oblivious as usual to my descent into despair, I got in my car and drove aimlessly around town with the radio blaring. It felt so stealthy somehow, yet liberating, like I was a teenager sneaking out in the night, or a convict breaking out of jail. J. never even noticed that I was gone. While I was driving the dark streets, crying and alone with nowhere to go, something inside me snapped. Something broke, I felt it. And I knew I had to change the way things have been going or I was going to blow my brains out.

I sent J. back to Baton Rouge today. I just can't take this whole business of life revolving around his tv programs all day then him turning in at 8:30 every night, with no actual human interaction between us. If I'm going to be trapped in the house, for god's sake let it at least be with somebody who will have conversations. At this point, I'd rather be alone.

I hate this. Our relationship has devolved to the point where there's nothing left but the babysitter-sittee dynamic. I might as well be his sick grandmother or something. He's stopped seeing me a a woman, as a lover, or even as a competent capable interesting adult. He goes through the moves, doing the caretakey things: he cooks for me between his favorite programs, he admonishes me to take my medications like I'm an incompetent child, he brings me my dinner in bed then goes back to watch more tv by himself, while I eat alone. And when he's had enough tv, he just turns off the light and goes to sleep, barely bothering to say good night. It's like the marriage from hell, where nobody talks. He seems so distant, exuding cold rational parental sternness except when he occasionally explodes with anger over some little thing. It's like in his mind he's been waiting so hard for me to die , that to him I've already died.

I've been so miserable and felt so alone. I actually feel much less lonely when he's gone than I do when he's here. And this hurts.

I also think all his "help" has been hurting me in a way too. I don't want him to keep doing things for me; I never did. What I really wanted was for him to just be here for me, to listen and care, be warm and kind and compassionate, not always running around fixing stuff like he's trying to avoid me. Besides I need to be doing more things for myself, even simple things like cooking and shopping and cleaning. I desperately need to get some semblance of a sane life back, to revive my old sense of independence and agency. I need to stop feeling like a helpless vegetative nonentity just lying around all the time.

In his efforts to protect me from germs, J. has turned into my jailer. I need to go out when I want to, even if it's just to see my therapist, get a massage, visit the acupuncturist, talk to friends, buy groceries, maybe even go to the gym once or twice a week. But he doesn't understand this, or he doesn't seem to care about how I feel. I understand why he's this way, he's reacting because his father died of an infection when he was sick with lymphoma. But I'm NOT his father. Do y'all understand? I need so much to be part of the world, I need A LIFE again. What's the point of fighting cancer if there's no life left to fight for? Yes, there is some risk of infection if my WBC count is low. But I'm very serious when I tell you that the risk of severe mental illness if I DON'T do these things is a thousand times higher, and more life threatening.

So today I'm going out to vote, then I have to drive myself down to Our Lady of the Damned for my biweekly blood draw. I'm going to call P. and make an appointment for a therapy session, and also see about calling Wendy for a massage. It looks like it's going to be a nice day, so this afternoon I may walk up to Miss Wanda's cafe. I haven't seen her in weeks, and I miss her. I may walk over to Benny's supermarket and pick up something for supper. If my blood counts are ok, tomorrow I may get over my fear of being bald in public and swing by the gym. I miss those guys like crazy.

So that's where I am now, desperately struggling to salvage some tiny shred of mental health, to find even a sliver of my lost self somewhere in the hideous heap of soul rubbish and debris at the bottom of this unmitigated pit of hell.

Two treatments down, six to go. Wish me luck.

Love always,

-Liz (aka Mom).

As The Tumor Turns: The Early Thanksgiving Episode
November 12, 2006

Dearest Gang Members:

I really want to thank you all from the bottom of my heart for rallying to my support after the last grim episode of As The Tumor Turns. So grim it went out without a title! But I'm feeling much MUCH better now, though I must apologize that I haven't yet managed to muster the psychic energy to return phone calls and answer emails yet. Such is life these days. But I'm deeply grateful to you all for pulling me through that dark spot. Thank you, thank you, thank you!

Special big thanks go to Marla, who went to the heroic extreme of selling the house next door to none other than...drum roll...Popp and Michelle! If THAT didn't cheer me up, nothing would. (For you non-locals, Popp is a famed zydeco musician; they're both great people who share their living quarters with Amber, the world's cutest five-year-old.)

Thanks to Harrison and Alex for the sweet letters and pictures of your gorgeous new kitchen; thanks to Julie and Missy for the calls and emails; thanks to Finnie and Lia for calling plus that excellent though poignant blogging; and a very big thanks also to Julian, who inadvertently and unknowingly convinced me that when this is all over I should think about--are you all sitting down?--selling my house here and buying a houseboat in Portland. (They're actually called "floating homes"; a houseboat has a motor.) I'll have to declare bankruptcy first, but hey! Dare to dream!

And finally, the great news that you've all been waiting breathlessly for--no, not remission, even better: I started a new blog!

I'm going to keep it kind of low key and private, though not aggressively so. I'm mean it's not a state secret or anything, but I'm not going to advertise it. Posting may be sporadic, and probably excruciatingly dull since I don't get out much these days. I mean, how many entertaining ways can I possibly portray the gripping excitement of knitting, or vomiting, or spraying stuff with Lysol, or dashing off to the Wal-Mart to buy stool softener? Anyway, there it is; bookmark it and check in for updates from time to time.

Again, many thanks to all of you for hanging in there with me. Next tx is November 22, which means I'll be knocked out of the ballpark for Thanksgiving AND my birthday. But I've got 10 more days of feeling good, and I plan to enjoy every single second. (Bought five new skeins of yarn today--almost more excitement than I can stand!)

Take good care of your wonderful wonderful selves, gang.

Much love till next time,

-Liz (aka Mom).

It was such an awful, miserable, hopeless time. I've almost managed to put it out of mind, to repress the memory. But reading these letters brings it all back. When I was at my very lowest, suicidal and filled with hurt and sickness and despair, several people tried to help by assuring me that it was "just the Prednisone talking." But looking back, I am certain that it wasn't. The Prednisone may have amplified the message, may have lifted the social inhibitions that normally caused me to keep such feelings to myself and added to the drama of the delivery, but the feelings of hurt and pain and rage and despair were extremely real, honest, human reactions to the brutality of the situation. It makes me sad now to look back and see my former self hurting so bad, struggling so hard to appear brave and sane and upbeat so my loved ones wouldn't worry. Shutting down and turning off the switches in an attempt to stop feeling. I honestly have no idea how I survived.


Blogger Mel said...

I can't remember how I first got to Grannyvibe - maybe it was from Finslippy? - but one of the first things I learned about you was that you know yourself better than almost anyone I've ever met. It kept me coming back, and it made me sad when you shut down the original blawg.
Now again you have proven that my original thought about you was true. I hope to god or dog or bob that I am half as capable of understanding myself and my feelings as you are someday.
And I understand that compassion for your past self - there are a few very sad places in my history where I wish I could travel back, give that sad, broken girl a hug, and tell her that things will get better. That's what I look forward to these days, when things just get too sucktastic for me to handle - the notion that soon I'll be looking back, thinking how bad it was but that it got better, and wishing to give that past Melanie some comfort. Sometimes it even makes me feel better. Sometimes.
{/novel-sized comment}

5:06 PM  
Blogger Trasi said...

All that time I wondered how you were doing, every once in a while checking Finn's blog too in order to see if there were updates about you (and read what he has to say, he's so charming and smart!). Kind of good to have the blanks filled in. I can't help but ask - is J still around? What ever happened? Last I knew, the whole thing with a house next to his house blew up, and I don't remember reading another word, beyond your severe disappointment.

7:49 PM  
Blogger Christina said...

Hi Liz,

Thank you for posting this. I have to say that I thought about you almost daily when you pulled Grannyvibe so quickly. I figured things were bad, and I see...the were.

You are an amazing woman. Not just for going through what you did, but for your frank and truthful account of what was happening. Your willingness to share this with people is so touching and I'm sure helpful for people who are going through this.

I'm glad you're here to tell about it!


9:12 PM  
Anonymous Anonymous said...

See, and this is another reason these should be a book. (I will stop harping on this anytime you say, BTW; let me know if/when it gets obnoxious.)

"It's like in his mind he's been waiting so hard for me to die, that to him I've already died."

I've had my form of cancer for at least 28 years, been with my true love, an excellent man who really does truly and deeply love me, for just about 12 years, just slightly longer than I've known the disease became metastatic, and you know what? We still cycle through this place. You know why? Because cancer sucks.

Here's why else: The specific way in which cancer sucks most of all leaves everybody starving for control. The patient wants autonomy and self-determination and her adulthood to remain intact. The loved ones want to keep her from dying, one way or another, no matter what. However, if the loved ones really want the patient to live and be glad about it, they have to make an effort not to tyrannize the patient with the fruits of their own fears. The disease is tyrannical enough. The patient has her own fears -- not such different fears -- to grapple with, and not being able to make her own choices about how does not help.

This goes back to the whole thing about "help-rape," forcing "help" on people as a way to dominate them, as you remarked elsewhere -- sometimes, when it really does come from love, love that's in pain, to dominate them into surviving because the fear that they might not is unbearable.

So, see, this is why it's important that these stories be told. Not everyone has access to therapy. Not everyone has the strength to say "No!" to people who "mean well." When you describe your story, and share it, other people -- not just other cancer patients but people who love them -- read it and learn.

Plus, you could use the money.

(Fairy godparents of the publishing world? Where the hell are you? This is an opportunity for you to make money and improve the world a little bit.)

Okay, that's all the blather I have to spew on you today, besides further reiterations along the lines of "Hey, go you!"


3:54 PM  
Blogger Gosling said...

Thanks for posting all these, Liz. Hard as it must be to read them. I'm another one who was wondering what was going on after Blog I bit the dust. It's funny how we come to care about people we've never met. Especially when they're so expert at describing their experience. You continue to rawk.

8:14 PM  
Blogger Kelly Kane said...

Hey there! I just stumbled across your blog when looking for a funny picture for my cancer blog! I love the mask picture!

Stay hilarious! :)


11:46 PM  
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12:46 AM  

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