Good morning, Blogistan! Hope you all had a great weekend. I have several exciting announcements to make, in no particular order.
Let's see, I'll start with the grand opening of the Deep Inferno Trading Post. I have joined the Amazon.com Associates affiliate marketing program. This means that if you click over to my little emporium and buy something I recommend from Amazon.com, I can earn up to 10% in referral fees. My brilliant geeky son helped me set it up, built me a lovely front end, and voila: Ye Olde Book & DVD & Music Shoppe is ready to go!
There are many books, including a few cancer books, some juicy Louisiana fiction, and other good stuff that was fascinating enough to hold my microscopic attention span over the course of the last grueling year. Also a bunch of my favorite movies, and an entire section of Louisiana music. So check it out, browse around, and if you find something that intrigues you enough to make a purchase, you will be my best friend for life.
And then taking another baby step into the wonderful world of generating some income, I have started writing for a new web site called As We Are Magazine. So go check that out. The founder of As We Are, Trudi Evans, is a regular reader here, and she kindly invited me to start a new blog over there. I like her philosophy: "This magazine is dedicated to providing women with a forum to speak out and speak up. It is founded on the belief that we are good enough, as we are. Our hips don't need to shrink, our clothes don't need to look better, and we don't need a tan to improve the world. Here, we can analyze, empathize, and inspire true change in our societies."
So I decided to restart my old Granny Gets A Vibrator blog, running with the theme of "Middle-Aged Woman Bumbles Outside Her Comfort Zone; Hilarity Ensues." I'll be posting at least twice a week, running some old stuff, adding some new stuff, and seeing where it takes me. I'm suddenly really looking forward to writing that has nothing to do with cancer. Moving on!
I've also sold a few blog pieces to a health care web site, and I've been interviewed by a magazine that's doing a feature on cancer blogging, which might bring me some more helpful publishing contacts.
And I'm in the process of setting up an online personal trainer business, which will be called "Granny Gets A Six-Pack." I'll let you all know the very minute it's ready to go, probably in the next week or two.
Finally, there's a second tentative offer on the house. This one could fall through too, of course, but this time the buyers are fully aware of the wiring and roofing issues and insurance-fu right up front, and they made the offer "as is." So please keep your fingers crossed.
In other news, I got the key to my new shack over the weekend, and I've already planted a new garden. I'll be moving in a couple of weeks. It's been empty for several years, and it's filthy. I spent all day yesterday cleaning the kitchen: sweeping out truckloads of dead roaches, spider webs, and mouse droppings, then getting down on my lily white knees to scrub the floor with disinfectant. If I have time today, I'll start tackling the bathroom.
But in spite of the funk & filth, the place has a very cheery feel to it. The neighborhood is fabulous, and yesterday four people dropped by to welcome me to the hood. I love the sounds: rain on the tin roof, kids playing basketball in the vacant lot next door, and of course the trains. Every time a train goes roaring by I get all excited and run outside to watch, though I suppose that will probably wear off soon. But I don't know, I'm thinking I might become a serious train watcher. (One of my favorite movies ever, which you too can own, is The Station Agent.) I've been a circus train fanatic for 15 years, and the circus is coming to this neck of the woods in June, so I'm gearing up for some passion in that department. All in all, the new shack is looking very promising.
I think my desk is going to go in this corner, because I love to stare out the window when I'm supposed to be working.
Anyway. Between all these exciting new developments and the very kind generous donations readers made through my PayPal button, I'm feeling extremely optimistic for the first time in ages. Optimistic and happy. Wow, happiness: something I'd completely forgotten the meaning of. Finally, it's back! Thank you all!
In my ongoing graitude to everyone who reads here, may I echo today's beautiful and true words from the magnificent brainhell:
the support group has brought out everyone's better angels. and if it is true, as my friend visiting from hawaii said, that many people love me, then it is just a reflection of the basic human impulse to GIVE ... to anyone halfway decent who is in need.
Thanks so much to all of you. As horrible as the news seems day after day, know that the world is still filled with goodness.
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.
Love,
-Mom/Eliz.
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.
Several readers have suggested that I start an online personal training service. This is an intriguing idea, since I can't go back to work at the gym until I have my hideous port removed and the damn hospital won't give me an appointment. But I'm not sure how the online training works.
I can see how the eating plan part works, but how does a trainer operate online when it comes to working out? Most of what I offered my flesh & blood clients as a certified personal trainer was real nitty gritty hands-on stuff: measuring bodyfat composition with a Futrex machine; visually evaluating their strength, flexibility, and range of motion; discovering their limitations and designing a plan that works around them; teaching them to lift with impeccably correct form; spotting them and showing them which muscles to fire; monitoring their progress and knowing when it's time to increase resistance; entertaining them with bad puns and stuff so they don't die of boredom during their sessions. All stuff that required me to be standing right there beside them.
For those of you who have engaged or researched online trainers, how the heck do they accomplish these things? Exactly what services do they offer? What sort of rates do they charge? How do you decide that they're a better choice than hiring a face-to-face trainer?
As many of you know, my personal motto is: I don't want to be skinny, I want to be STRONG! And this is the approach I take with clients as well. I believe the first step toward shedding unwanted fat is to increase your metabolism by adding beautiful sleek muscle tissue, and lots of it. No matter how old or young you are, it can be done. So I'm not the one to help a person whose goal is to become wispy, willowy, tiny and frail. I want my clients to grow strong and healthy and robust, full of energy and vitality. I don't believe in dieting, or starving, or depriving yourself of food pleasure. Life is way too short for that.
The author a year ago at age 52
Another of my personal mottos is: Maybe I can't eat everything I enjoy, but I can sure as hell enjoy everything I eat. I help clients design individualized eating plans that maximize muscle building, where every single calorie is nourishing and delicious. I spend time with my clients figuring out ways to avoid or eliminate mindless eating, those ubiquitous Pavlovian traps and triggers that cause them to gorge when they aren't even hungry, on stuff they don't really enjoy and that isn't the least bit good for them anyway. Everybody has different weak spots, and we work on finding them.
And I'm sure it comes as no surprise that I'm a total bust as a Nazi drill sergeant. Alas, I'm a big ol softie with my clients. When it comes to eating and working out, my approach comprises empathetic listening, paying close attention to details, offering exuberant cheerleading (or kind commiseration), and tons of positive reinforcement. I'm not a good choice for those who prefer a dominatrix in spandex. But I always got excellent results, and they came back for more.
So I don't know. Do y'all really think there's a market for this unconventional approach out there? Let me know if you have any ideas how this could possibly work. Thanks!
Wow. I can't even find words that are remotely adequate to thank the folks who hit that PayPal donation button over the last few days. You've not only rescued my horrifyingly empty bank account, you've uplifted my sagging morale like some kind of miraculous antigravity emotional wonder-bra. Thanks to each and every one of you!
There is, however, depressing news on the electrical front. An electrical contractor came by yesterday to give me an estimate for upgrading the wiring, but he took one look at the situation and shook his head sadly. Rewiring a big old two-story house is, apparently, an unthinkably major undertaking that would involve tearing down the walls and ripping out the ceilings and second floor. Essentially rebuilding the entire house. No can do.
So our only hope now is to find somebody, somewhere, who will insure it with the knob and tube wiring. My fabulous realtor Marla is frantically looking for a rogue insurance company that won't slam the door. We're also having a roofing contractor come out today to give an estimate for reroofing. But if it's impossible to obtain insurance, I'll have to declare bankruptcy and just turn the house over to creditors. Ha, let them deal with the damn mess! I hope they're getting severe migraines at the mere thought of it.
In happier news, and this is an extremely exciting milestone: I gave myself my very first post-chemo haircut last night! I just trimmed a little off the fuzzy tufts that were sprouting behind the ears. It felt good to be squeezing my trusty nail scissors, though it didn't trigger my old compulsive hair cutting disorder so far. But what fun it was, seeing that familiar little pile of hairs drifting around on the sink again! I think this is as long as I'm going to let it grow, so this will be the final Monday Hair Growing Progress Report. From now on, it's only going to get shorter (especially if the CHCD comes back). Woot!
Still a little thin in places, but the curls manage to achieve a pretty effective combover.
The author sporting ridiculous flip-flops and newly trimmed hair.
Before I started this blog, I sent out mass emails to a group of close friends and family members to update them on my condition. The subject line in the emails was always "As the Tumor Turns," which is where the name of the blog came from. Here I reprint some of those updates, written to my loved ones during the six weeks between my diagnosis and when treatment started.)
As the Tumor Turns: The Singalong Episode September 13, 2006
Dear Gang Members,
First of all: Great news on the GYN front! Since my pelvic CT scan showed an enlarged uterus and malignancy needed to be ruled out, I had an appointment with Dr. GYN scheduled today. (Sorry if this is way TMI for some of you. Finnie: close your eyes!)
Dr. GYN: Ok. An enlarged uterus. Let's see. Yes, ok, it's enlarged. Mmmm-hmm, definitely enlarged. It's...it's.. whoa, this thing is HUGE! Good LORD.
Me: Wow! Cool. Um, HOW big? I mean, what is "huge"? Are we talking grapefruit? Basketball? Breadbox? Volkswagen?
Dr. GYN: I'd say at least fifteen weeks.
Me: Fifteen weeks???? !!!!#@%$!!!
Dr. GYN: Oh, I'm sorry. Ms. Lymphopo? Could you please come down off the ceiling so we can finish the exam? "Fifteen weeks" is just a means of measurement we OB-GYNs use. There is no actual fetus involved.
Me: Shit, man. Don't even TALK like that!
Dr. GYN: Well then let me just say this is the largest non-pregnant uterus I have ever seen in my entire career. There doesn't seem to be any sort of mass or malignancy involved, it appears to be entirely benign, but it's just....huge.
Me: So what causes an enlarged uterus?
Dr. GYN: Well, one common cause might be carrying a very large baby to term. Was one of you children extremely large at birth?
Me: Why yes, as a matter of fact, one of them was. [AHEM.]
Dr. GYN: I'd guess, oh, about 40 pounds from the looks of it?
Me: Yeah, I'd guess about 40 pounds too, from the way it FELT.
Dr. GYN: Well congratulations. Apparently that was a fine big baby you had, what, 25 years ago? Nothing needs to be done now, except maybe to notify the Guinness book.
In other exciting Cancerland News:
It turns out I'm not having my mediport installed until October 9th, and the chemo will start a week or two after that. So unfortunately I probably won't be bald yet when Julie comes to visit the weekend of Oct. 15th. But I will have this hideous device protruding out of my jugular, jutting though my skin and chest wall, picking up radio stations and stuff. That will be almost as cool, and I'm sure she'll be duly impressed.
The chemo regimen I'll be on is called R-CHOP 21. Let's all sing along now (to the tune of Gilligan's Island):
R stands for Rituximab (a brand new highly effective monoclonal antibody-targeted drug, the future of cancer treatment);
C is for Cyclophosphamide (aka Cytoxan, which makes Agent Orange look like a pack of Twinkies);
H is for Hydroxydaunomycin (aka Adriamycin, which destroys heart muscle and causes instant death);
O is inexplicably for Vincristine (aka Oncovin--oh, look, there's the O!) which destroys the nerves, blisters the skin and dissolves the veins;
P stands for Prednisone, an anti-inflammatory that will make me gain 30 pounds a month even when I'm vomiting like a dump truck every five minutes, and it will also makes me totally insane!;
21 means I'll get to repeat this fun process every three weeks, for maybe four or five months. Wheee!!!
(Ok, you can stop singing along now.)
Before I start the R-CHOP 21, I'll need a few more tests: another CT scan, this time of the head and neck; another echocardiogram, to see if my heart has given out since the last one; a sonogram of my ovarian cysts (Moe, Larry, & Curly); and a MUGA scan.
(Now let's sing again, you know the tune:)
MUGA stands for MUltiple Gated Acquisition.
(OK, stop singing.)
The goal of the MUGA scan is to ascertain that my heart is healthy enough for me to receive Adriamycin, which is going to thoroughly destroy it anyway, and also to serve as a baseline to measure the accumulative damage from the Adriamycin, so they can discontinue it about 3 seconds before my heart is reduced to a pile of smoking rubble. State of the Art health care!
That's it for this week. I ordered some cunning little caps and scarves for baldies which haven't arrived yet. I also cut my hair even shorter thinking the chemo was imminent. Which is fun, because now all my doctors ask me, "Hey, how's the chemo going?" and then don't believe me when I tell them doesn't start until next month. Anyway, I'll send embarrassing pictures when the cunning little caps and scarves get here. I'm still debating the whole gristly wig question.
Y'all's assignment this week is to go out and stop acting your age for a day, then report back to me with the results. If anybody needs bail money, we can probably take it out of the New Shoes For Liz fund, if the correctional officers will let Finnegan give us the password. Meanwhile, I have attached a photo of this very same FINNEGAN, taken five minutes after he was born. Hi, Finnie! Bigger than a breadbox, buddy!
Take care, gang, till the next episode of As The Tumor Turns,
-Liz (aka Mom)
The 40 lb. baby that stretched my uterus to kingdom come
As The Tumor Turns: Shocking Unretouched Knitting Photos Revealed September 18, 2006
Dearest Gang Members:
For some unknowable reason (actually, hydrocodone is right up near the top of my own personal list of theories) I suddenly got a wild hair up my ass (or is it a wild hare? I've never been sure, and frankly, I'm afraid to look) to learn how to juggle before I die. This could be a good thing since I'm hopelessly spazzy when it comes to basic hand-eye coordination. My learning curve may be so pathetically flat I'll be forced to postpone dying for like maybe 70 years or more.
Anyway, as soon as the hair/hare began to tickle, I rushed over to eBay and purchased some colorful little sand-filled balls that won't bounce all over the house if I drop them (I thought it might be prudent to refrain from starting off with the flaming live chainsaws, and just work my way up to them gradually) and an instructional DVD called "Chainsaw Juggling For the Ineducable Klutz." So y'all will soon be receiving gripping biweekly multimedia updates on my juggling and/or amputation progress!
This is all part of my new quest to find sedentary housebound activities to replace all the adventurous athletic outdoorsy stuff I can no longer do, like rock climbing, sky diving, motorcycle racing, and swimming out to Alcatraz and back everything morning. So far I've got juggling, knitting (see attached unretouched color photos!), reading tarot cards (I've ordered a few more colorful turbans and some gold hoop earrings), playing with my new Waldorf kindergarten art supplies, and, um, well ok that's a start. If y'all can think of any other electrifyingly entertaining housebound pursuits (shut up, J.), please send me your ideas. Considering my hydrocodone impaired judgment, it's probably best if they don't involve any heavy machinery or hot glue guns.
Shocking unretouched knitting photos
On the medical slash mental health front we've got a fairly slow week ahead, with long stretches of nothing then a couple of insanely overextended days interspersed in the middle. On Wednesday I have a CT scan of the neck & chest in the morning, then in the afternoon J. and I have our first couples therapy appointment. On Thursday I have a MUGA scan in the morning, then I see my new therapist P. in the afternoon. I'm already exhausted just thinking about so much bustling activity!
I also need to call my dentist this morning and make an appointment to have a $650 crown put in, since I have some ominous cracks in a wayback molar and can't risk having it break during chemo when the danger of fatal mouth infections runs alarmingly high. Never a dull moment here in Cancerland!
I've been going to the gym for a little while every day, jogging a slow mile on the treadmill and doing some embarrassingly light lifting. I have good days, and then I have days when Stephen Hawking could kick my butt, but I am noticing a gradual increase in my stamina. Since all my hard-earned gluteal muscles have viciously catabolized themselves, I'm having an ongoing issue with my shorts slipping down past my hoo-ha when I jog. For this reason I've been making an extra special effort to wear clean attractive briefs to the gym.
J. has been urging me to go out dancing with him, and I've reluctantly agreed to give it a try as long as we go to one of the nearby black-owned smokefree organic juice bars with sterilized rest rooms and only the hottest funkiest groovinest zydeco bands (i.e., not Travis Matte). He's looking into our options.
That's it for now, gang. Stay tuned for a heart-stopping blow-by-blow playback of my hair-raising MUGA scan.
Yours till the tumor turns, -Liz (aka Mom)
As The Tumor Turns: The Return of the Mad Hatter September 24th, 2006
Hello, gang members!
It's been a relatively good week out here in the far reaches of Cancerland. So good in fact, I almost forgot I was sick, which is why I've been kind of lax about sending out updates. Oops.
Special thanks this week go out to L. for offering to let me stay in her charming little beach cottage on an unspoiled tropical Florida Island. I'll be taking her up on her kind offer next spring when I finish treatment. This is going to be my Big Special Thing that I can look forward to, the carrot on a stick that will get me through the roughest most brutal stretches of chemo, the way I will reward myself for making it through 18 weeks of sheer hell without slaughtering any innocent bystanders. Thank you so much, L.!
Special thanks also go to Alex who has offered to send me her laptop since Harrison got her a newer fancier one to use for grad school. Yay Alex! Come on, everybody knows I couldn't survive five minutes in the most gorgeous tropical paradise without a computer. Thank you!!! No wonder it was such a good week.
Let's see, I had a CT scan of my neck and a MUGA scan of my heart, and I should get the results of those tests when I meet with a terribly young oncology resident on Tuesday (since when did they start letting sixth graders go to med school?). If all is well, the mediaport (as Julie calls it, since it picks up wi-fi) is still scheduled to be installed on October 9th. And then stand back: it's open warfare against the malignant invaders!
Speaking of open warfare (hahaha, just kidding), J. and I had our first appointment with the couples therapist on Wednesday. Unfortunately I didn't like her. It just didn't click for me. She seemed to me to be too formulaic and condescending. I couldn't stand the way she talked down to us in a singsongy voice, like she was scolding a couple of naughty children. Yuck. I was also mildly disturbed when she asked me if I would consider going to a different hospital, besides Our Lady of the Damned--I mean, hello, we're talking $60K+/month in treatment costs. Did she think I might just switch to Deep Inferno General on a whim and pay up front out of pocket? Shyeah.
Also she gave J. the names of a bunch of "caregiver support groups" that all meet at hospices. HOSPICES! Um. I mean, we're not talking about bed pans and morphine drips yet, for chrissake. I prefer to think of him as my "main support person" rather than my "caregiver" at this point, since I'm still very much ambulatory, able to feed myself, take my own showers, wipe my own butt, drive myself to the Wal-Mart, jog a mile every day, and juggle live chainsaws. All at the same time, backwards and in high heels!
So we won't be going back to that therapist. My fabulous individual therapist P. gave me the names of several couples therapists she knows and recommends so we do have other options.
But things seem to have been going very well on the True Love front lately (knock wood). J. was here during the week and bless his saintly (but not TOO saintly!) heart, the sweet man fixed my dishwasher which has been broken since I moved in six and a half years ago. Mr. Mechanical Genius dragged it out on the back porch and took it apart and ran all over town looking for parts and stuff, and now it runs like new. Having super clean dishes is going to save my life once I start chemo and my immune system gets knocked halfway to Mars. In other saintly news, Mr. Renaissance Macho Man has also been taking my skirts home and shortening them for me on his sewing machine, in preparation for my new image as a skinny-legged baldheaded sexbot.
Speaking of bald headed sexbots, a bunch of fetching new protective cranial prosthetic devices arrived in the mail, and yes, there are PICTURES!
Ok, that's it for now gang. I meet with a 12-year-old oncologist on Tuesday, and have an echocardiogram on Thursday. I had an appointment scheduled with P. late Thursday afternoon, but I'm going to reschedule that since they've started having zydeco cardio workouts at my gym on Thursdays, and I want to go. Miss Wanda went last week and she said it was a blast. A fun 45 minute aerobic workout, without having to breathe any secondhand smoke or touch anybody's sweaty old germs. How perfect for me now!
With love until the next episode of As The Tumor Turns,
-Liz (aka Mom)
As The Tumor Turns: The Ascendance of Misanthropy September 27th, 2006
Hello again, gang members!
The good news from Cancerland this week is threefold.
1. Last Wednesday's CT scan of my neck was shamelessly normal. No hideous neck tumors! I even had the names picked out: Arthur if it was a boy and Betty Lou if it was a girl. I guess I'll have to save those for any future cacti.
2. I passed my MUGA scan with flying colors. Since I have the heart of a healthy 21-year-old, I've been declared eligible to submit that perfect little heart to highly toxic doses of the chemo drug Adriamycin, which will reduce it to a steaming pile of myocardial fecal matter in a few weeks.
3. Now that my eligibility has been declared, I've been given an official start date for my chemotherapy: 8:00 am on Wednesday October 11th. Two days after my mediaport surgery, and two days before Julie arrives from Brooklyn for a weekend jaunt to her old stompin grounds. (What does Miss Manners say about the etiquette in a situation where a hostess vomits like a dumptruck every five minutes in front of her houseguest? Should the guest pretend not to notice and just continue to devour her Louisiana home-cooked meal of deep-fried pig penises? or should she join the hostess in the pukathon, or what? Julie! Research this!)
Tomorrow I have to go have a $650 crown put on a cracked molar. I can't risk having the tooth break during chemo, when mouth infections can be fatal. It's funny, I'm dreading the dental work more than I am my upcoming surgery to have a permanent catheter inserted through my chest and down into my jugular vein. At least the surgeons will give me fun drugs; all I get from the damn dentist is two hours of listening to bad 70s Muzak while my mouth is wedged wide open with what appear to be a dozen S&M party favors. Plus a free sample of dental floss if I refrain from screaming or dismembering the hygienist again.
I'll tell you what I'm sick of. I am so tired of people asking me probing questions about my lifestyle, in hopes of discovering that I somehow caused my own cancer by being irresponsible in ways that THEY would never consider. "Did you smoke? Did you fail to have yearly physicals? Were you trapped in an abusive marriage? Did you snort pesticides out behind the garage every weekend?" Then they can say, "Whew, I'M safe! I never poured Round-Up on MY breakfast cereal!"
The flip side is the schadenfreude folks, the chain smokers who live on scotch and Krispy Kremes and haven't done anything more strenuous in 20 years than lift the remote. They just love it when some uptight health-food junkie, exercise-nut gym-rat like me gets cancer, because it proves how worthless all that healthy lifestyle propaganda crap really is. They may smoke ten packs a day and be 250 pounds overweight, but ha! THEY'RE not the one who got cancer, are they?
This is one of the lovely little side effects of cancer they never tell you about, that you end up hating everybody. I think the only person I truly love any more is the UPS man who brings me fun new prezzies every day: books and crayons and DVDs and wild wigs and live chainsaws to juggle. Everybody else on earth can just bite me.
Except of course you guys. I love all of y'all too.
And if anybody's wondering why I never answer my phone these days, it's because I've turned the damn ringer off until after our hot controversial local election Saturday. I get an average of 437 campaign calls per hour, mostly from obscure candidates I've never even heard of, and at that rate I'd NEVER achieve my quota of medically prescribed naps. I'm enjoying the phone-free silence so much, I may leave it off until after the next presidential election. If anyone MUST reach me, resort to email. I tend to forget I have voice mail.
That's it for now. No new pictures this time, but if my tumor bursts dramatically through my chest wall or anything cool like that, you'll be the first to receive a second-by-second photo documentary of the event.
Love until the next horrifying episode,
-Liz (aka Mom)
My Dearest Gang Members:
Hello again from Cancerland! I see our old friend the Big C has made an appearance in the news today: "Farrah Fawcett Staying Positive Despite Cancer Diagnosis." Ms. Fawcett (who is almost 60--how the hell did THAT happen?) is quoted as saying, "I deeply believe in one's own positive will to overcome even the most daunting challenges."
Well you go Farrah. Over here at the Chez Le Lymphoma Shack, where we have just been informed that we face the most daunting challenge of having to pony up $4,000 cold hard cash every three weeks for the next six months to pay for a drug called Neulasta which is necessary to prevent us from shuffling off this mortal coil 24 hours after each chemotherapy treatment, we have developed a sneaking suspicion that positive attitudes may be a luxury of the fully insured.
Oh and don't get me started on the whole celebrity cancer treatment phenomenon. I tried to read Lance Armstrong's cancer memoir, and to paraphrase my beloved Dorothy Parker, this is not a book to be tossed aside lightly; it should be thrown with great force. And not just because the writing totally sucks and I could write much better but nobody's chomping at the bit to publish ME, are they. No. Listen, this is his idea of "beating the odds": one hour after he's diagnosed he holds a press conference and within minutes all the leading oncologists in the universe had jumped aboard his bandwagon. State of the art treatment starts the very next day, expenses be damned.
What, am I bitter? Just because it's been six weeks since my diagnosis and new tumors are popping up everywhere (yes! say hello to Sylvia and Phyllis, the newest Easter eggs in my armpits!) and all I've done so far is have surreal conversations with 12-year-old oncology residents whose scripts were clearly a joint collaboration by Franz Kafka, Lewis Carroll, and George Orwell? Ok, maybe just a little.
Nevertheless, we wish Ms. Fawcett the very best in her battle with the Big C, and only regret that we can't be a fly on the wall the first time she wanders into a wig store and sees row after row of smiling wig stands decked out in her own immortalized if extremely unfortunate 1970s wing-ding hairdo. At the risk of appearing tastelessly negative, we remain a huge fan of the irony over here at the Chez Le Lymphoma Shack.
Other news from our little Shack O' Negativity: I will start my chemotherapy treatments on Wednesday the 11th, so yesterday J. and I went to chemo school. It was just the two of us and a nurse (our old friend Pam, the one who helped me survive my first biopsy in August). We watched several entertaining videos. The one on how to inject drugs into your own excessively squeamish self was my personal favorite: "If you ,accidentally touch the needle, discard the whole thing immediately in your puncture-proof bleach bottle with the Clorox label still attached so the neighborhood junkies will never suspect it contains used hypodermics, and start over with a new syringe." Uh-hunh, and this would be the pre-filled Neulasta syringe that runs me $4K per pop.
From the videos and the several thousand cheerfully glossy brochures Pam gave us, we learned the following fascinating factoids:
1. Only white people get cancer. Not only that, only affluent fully-insured attractive white people with utterly bland earthtones home decor get cancer. I'm wondering now if perhaps I should seek a second opinion on my diagnosis.
2. Chemotherapy causes these affluent white people to float through their bland earthtones with dreamy beatific smiles as they go about their ordinary daily activities, which consist mainly of eating breakfast on the patio with the guy from the Cialis commercials and watering the bedding annuals along the driveway. Nobody ever goes bald, gets abysmally depressed, or projectile vomits all over the boring Macy's bedspread.
Pam also had the thankless job of informing us that once I start chemo treatments, all my bodily fluids will become lethally toxic and J. must "take precautions" not to come into contact with any of them, or he too will lose his lunch and his hair and have to pay $4000 for his own fucking Neulasta. I also have to make sure the dogs don't drink out of the toilet after I've used it (which means what, remove those tiny little wee step ladders??), and I have to always take care to flush two or three times so the next person isn't injured by my biohazardous waste products when they splash around in the toilet bowl.
So, dear friends, we and our negative attitude are down to the wire here at the Chez Le Lymphoma Shack. I almost feel like I'm about to be deployed to Iraq! I have to be at the hospital on Monday morning at 5 am for the surgery to install my mediport. Then on Wednesday at 8:00 am I'll be going in for my first chemo session. It should take about 6 or 7 hours, since they have to drip the evil stuff verrrry slowly or else it will totally dissolve my veins and send me into dramatic toxic shock seizures.
So what, you may be wondering, can YOU do to help out at this point? Well, those of you who are fully insured can adopt the elusive positive attitude for me on Wednesday morning. And since the Adriamycin is going to destroy my heart's muscle fibers, greatly increasing the likelihood that I might need a heart transplant, you can all go get your DNA tested to see if you might be a potential heart donor.
That's it for now. But next week the plot will finally thicken and ensuing episodes are guaranteed to include PICTURES! Pictures of my new mediport poking through my bruised bloody skin, pictures of the Red Devil being dripped slowly into my jugular while I pose for Edvard Munch, pictures of me industriously holding bake sales and bikini car washes, because like Farrah I believe that One's Own Positive Will can easily raise $4000 every three weeks to pay for the Neulasta, even if it occasionally involves projectile vomiting all over somebody's peanut butter brownies and just-washed BMW.
Love and negativity to you all!
Yours until the tumor turns,
-Liz (aka Mom)
(It's been kind of weird for me to look back and recall how naive and upbeat and optimistic and foolishly brave I sounded before the descent into chemo hell. I'll post more of these old email updates over the next few days.)
So, terrible news. There's been a little glitch in the house sale. Because it's very old (1912) with knob and tube wiring and the roof will need to be replaced in the next five years, the potential buyers are unable to find anyone who will insure it unless it's rewired and reroofed. And without insurance, the bank won't give them their loan, and they can't buy the house. This is a pretty serious glitch, because since I can't afford to pay for the work, it means nobody else will be able to buy the house at any reasonable price either. I'm totally screwed.
I had absolutely no trouble finding homeowner's coverage when I bought it seven years ago, but three major hurricanes later, squeamish insurance companies have clamped their sphincters shut with the violence of a stainless steel long-spring bear trap. It's harder and harder to have houses insured around here, especially older houses. In a way, I may have indirectly lost my house to Katrina, yet there's no way in hell I can qualify for a FEMA trailer. Shit: me and my house, both uninsurable wrecks that fell through the cracks.
Anyway, my intrepid friend and realtor Marla is furiously exploring all possible options. Meanwhile, with the house sale put off indefinitely, I find myself in dire financial straits. So I broke down and put a PayPal button on the side bar. This was a really hard thing for me to do (and not just because I have pathetic chemo brain dementia and couldn't for the life of me find the instructions for installing the damn button in the template and finally had to call on my sons for help).
I sincerely hope nobody feels offended or pressured or resentful, or in any way put upon by the presence of the donate button. I would much rather earn money than beg for it, so if anybody knows anybody who might pay a decent wage for writing cancer humor or whatever, please send them my way. Meanwhile, my heartfelt thanks to those who have already helped, and to those who can. This was a last resort, but I just need to do whatever it takes to get myself through this series of disasters with my remaining shreds of sanity intact. So that maybe someday the take-home lesson for everybody will be: See? You can survive your very worst nightmares and come through ok!
The author, trapped in the stainless steel sphincter of the insurance industry.
"Poverty is the worst form of violence." Who said that? It was Ghandi, I think. Not Jesus. Jesus was the one who said, "Blessed are the poor." I just spent four hours of fruitless waiting in a sweltering smelly room overflowing with the poor, the sick, the injured, and the deeply discouraged over at Our Lady of the Damned this morning, so I think I'm going to go with Ghandi on this one.
So. Speaking of poverty and violence, as kind of an aside, there was this article in the local paper today about a 30 year old inmate who committed suicide in the parish jail over the weekend. He had indicated that he had been depressed, so they placed him on suicide watch in an isolation cell "for his own protection." But when nobody was looking he managed to strangle himself to death with his own trousers.
According to the paper, "it is unknown as to why [he] took his life." "The only thing we know that could have contributed is his mother died about six months ago," a spokesman for the sheriff's department said. Actually she died a couple of years ago, but whatever. He was sad.
But the paper goes on to say the unfortunate guy was arrested on May 8 on a bench warrant for failure to appear for arraignment on charges of littering, speeding, driving while license is suspended, no proof of insurance, expired motor vehicle inspection sticker and resisting arrest. His bond was set at $1,000, and officials said he only needed $135 in cash to bond out. However, according to the article, he "was remanded to the parish jail because he could not raise the money." And the next day he tied the leg of his pants around his throat and pulled it tight enough to shut off the oxygen to his brain; by the time they found his body, it was too late for CPR.
So wait. Here's a guy who could not raise the $135 he needed to get himself out of jail, nor did he have any friends or family who could or would, in a town where 90% of the people never go to jail anyway because they know how to get their tickets "fixed," and the cops are utterly mystified why he might have been extremely despondent? Sheeyit. Ask Ghandi, people, not Jesus. This kind of abject poverty does honest to god brutal violence to the spirit.
I wasn't born into poverty myself, but to paraphrase Malvolio, I've sure as hell managed to achieve it and/or have it thrust upon me this past year. Though I'm still probably able to raise $135 if I need to. Anyway. I just thought that little glimpse of poverty was kind of enlightening. Because I think about the nature of poverty a lot these days.
Moving on to happier news, I've accepted an offer to sell my house. It's for 20% less than I was asking and 30% less than the appraisal, but it's the best I could do. If everything goes well, I'll have to be out of here in two weeks. It's an awkward squeeze though because I won't know for sure until the very last minute whether the sale is actually going to go through, so I'll have to really scramble to hire a moving company and find myself a new place to live within days. I can't afford to move out before the deal closes, because until I have the house sale money in my hot little fist, I'll need every penny I have left for daily subsistence. I'm really down to the wire, and I can't be handing my meager savings for rent and hiring movers yet, in case it all falls through.
But at least I think I have a place to go, whenever the house closes. It's a little tiny "cottage" (and what is a cottage really but a glorified shack that got a nice coat of paint slapped on it?) here in town, and it's owned by an acquaintance. Nobody's living there now, and he's willing to be flexible with my unpredictable schedule and let me move in whenever. It's cheap, and most important, dogs are allowed. So it's probably where I'll end up.
It's kind of cute on the outside:
It has a front porch.
I can plant roses and stuff in this sunny little bed along the south side of the house.
It's very old and originally there was no kitchen or bathroom. Here you can see that a little kitchen got tacked on to the back.
Here's the kitchen on the inside. There's no refrigerator, and that stove doesn't work: it's a gas stove, and there's no gas line to the house. I guess it's just there for decoration.
There's a little eating area down at the other end of the long narrow kitchen. The cool old sliding windows actually work, and have screens.
Instead of tacking on a bathroom like a lot of old houses, they converted one of the two bedrooms into an excessively large bathroom.
It's wild, the fixtures seem to just float around in all that empty space!
Lots of room! Maybe I can make this my office.
But what's big for a bathroom is cramped for a bedroom. The one remaining bedroom is very small and dark, cavelike with its low ceiling and half a window. There's barely going to be room for my queen size four poster bed, and there's no way to fit any bed in there without totally blocking at least one of the doors. This is unfortunate since the only air conditioning unit is in the bedroom, and with a door blocked, the cool air won't be able to circulate to the rest of the house.
This is the small area that the front door opens into: I guess it's called the living room, though it's really more like a foyer. The house was moved here from its original site and the chimney was left behind, so that fireplace is a walled-up dud. I suppose this area is where a few chairs and bookcases will go, so maybe we'll call it the library. I'll probably do most of my "living" in the kitchen where there's more light.
The neighborhood has a much higher crime rate than where I live now. There are several magnificent old mansions in the immediate area, including this kitty-cornered ante bellum beauty you can kind of see through the trees here (owned by a very cool lesbian couple). But there's also a rundown Section 8 apartment building next door, a funky little all-night pharmacy across the street that's always getting hit by desperate junkies, and the train tracks (both the literal and the proverbial tracks, as in "the wrong side of") are about 50 feet away.
So that's it. 550 square feet. There's no stove, no refrigerator, no laundry hookups, no heat, and not one single closet. I'm not even sure it's legal to call that a house. But it's where I'll be calling home if this sale goes through. And I'm going to do my damnedest to make it a good one.
I'm hoping it's just going to be a temporary stopover anyway, a few months, maybe a year. Once I figure out how much money, if any, I have left after I pay off my astronomical medical debts, and if my scans in July still show no evidence of cancer, then I can decide what to do next. Maybe I'll travel, pack up the dogs and go have some adventures in that treehouse on Bainbridge Island, or the beach house in Florida. Maybe I'll find a tiny place around here that I can afford to buy, or a lot where I can afford to build something tiny. Maybe a cute little Katrina Cottage. But maybe this shack is where I'm doomed to spend the rest of my days.
At any rate, I can assure y'all of one thing: if things ever get so bad that I can't raise the $135 I need to bail myself out of jail, I promise I'll put a damn PayPal button on this blog before I hang myself with a pair of knickers. Until then, I'm going to join the vast majority of the world's impoverished population and do my damnedest to make it work.
This is my current living room. How much of my stuff will fit in the new shack? Stay tuned to find out!
A couple of weeks ago I wrote about some of the problems I have with people offering me unsolicited advice:
For one thing, giving advice always puts the giver in a one-up position, as the wise one who Knows The Answer. It simultaneously puts the givee in a one-down position, as the dumb ignoramus who never thought of the obvious. When I was feeling lonely and adrift, this split always made me feel even lonelier, and it pissed me off as well. Also, this kind of advice pinpoints the problem squarely inside of me, rather than in the world outside. It says that I am the problem, I am the defective one, I am the one failing, I am the one who is not coping properly, who is broken and needs to be fixed. Whether there's any truth to it or not, I just never found this implication to be at all helpful or comforting in times of dire distress.
As is often the case when I've been thinking about a particular subject, it suddenly seems to crop up everywhere. In the past two weeks, several of my favorite bloggers had posts about their own issues around the drawbacks of unsolicited advice. In a recent post about some improvements in his condition, brainhell wrote (emphasis mine):
before you start offering me opportunities to further expand my 'recovery,' -- even start my NBA career -- stop. don't. this could be a blip, or due to the weather. i don't need the stress of declining hopeful suggestions. if i improve, i will let you know. don't push.
And in a post over at Twinkle Little Star titled Defensive Parenting, Lisa (a mother of twins who is legally blind and hearing impaired, and whose partner is quadriplegic) wrote (again, as usual, emphasis is mine all mine):
I have heard other blind and disabled moms tell stories about people saying rude things to them on the street when they were visibly pregnant. You sometimes do not get much in the way of congratulations when you become a disabled parent. Many people mainly look shocked and concerned. Or they look at you as if you are a immature little 15 year old high school girl who just got knocked up in the back seat of her boyfriend's because she didn't think you could get pregnant your first time. They make comments like "Well, how are you gonna do this or that?" as if you had never given the matter any thought before and you just up and forgot you were disabled. You are looked upon as unwise, irresponsible, selfish, and incapable.
Yeah. What they said, which is exactly what I was trying to say, only better. An assumption of incompetence and ignorance is condescending and hurtful; and being forced into the position of declining unasked for advice adds stress while draining and deflecting already scarce coping energy. In the classic support-groupy way, I feel greatly relieved and validated when I read that other people share my reaction: whew, it's not just me being a big whiny bitchy self-centered ingrate. Others feel this way too sometimes.
Ah, the politics of help. Every bit as tricky as the politics of advice. I was thrilled that these authors clearly articulated a lot of my very own blurry angst regarding the whole "helper/helpee" dynamic:
Let's "begin at the beginning", and examine what help means to all of us. In most societies today, helping others is viewed as a socially admirable course of action. Those of us who are in a so-called "privileged position" are asked to give to others. We know we should give to our families, our communities, and most of all, to those "less fortunate" than ourselves. Yet, why is it that most of us, while perfectly comfortable offering help, are decidedly uncomfortable receiving it?
The answer to this question is at once relatively simple and enormously complex. Consider the contrasting perceptions regarding the giving and receiving of help as presented in Table 1. As Table 1 illustrates, although our society associates a host of positive attributes to help, these attributes clearly are reserved for the "helper."
Here I will spare myself the agony of attempting to devise the dreaded table in HTML, and simply summarize the damn thing. In the column headed "Why Do We Like Offering Help" we see that it: affirms our capacity, affirms our worth, affirms our superiority, masks our vulnerability, and causes us to be owed by the helpee. In the column headed "Why Do We Dislike Receiving Help" we see that it: implies deficiency, implies burden, implies inferiority, reminds us of our vulnerability, and obligates us to the helper.
Now back to the article. Kunc and Van der Klift go on to say (and I of course own the bold):
Is it the need for help itself that causes us to feel this way, or is it the kind of help we expect to get? Those who have closely examined this issue believe that the problem lies primarily with the lack of self-determination commonly experienced by "helpees". It seems that often dignity must be forfeited in order to receive help. The power to decide where and when help should take place, who should help us, and whether in fact help is needed is stripped away.
People with disabilities sometimes do need help. However, if they are uncomfortable receiving it, as most of us are, they are left in a classic "no win" position of either doing without help or enduring the underlying demeaning messages. Furthermore, it is almost impossible to confront the issue directly. If the helper's motives are questioned, the inevitable response is an indignant or sorrowful "I was only trying to help." Consequently, for many people with disabilities, help is a "four-letter word."
Help outside the context of choice and self- determination is disrespectful. We all want to feel necessary. However, when our desire to feel needed is at the expense of someone else's sense of competence and autonomy, we commit a lasting act of injustice. People with disabilities literally spend lifetimes struggling to be heard. We must learn to listen. As Marsha Saxton (1985) wrote;
All of those people trying so hard to help me...All of them hoping for me to ... do well, all wanting to be kind and useful, all feeling how important helping me was. Yet never did anyone of them ask me what it was like for me. They never asked me what I wanted for myself. They never asked me if I wanted their help. ...I do not feel entirely grateful. I feel, instead, a remote anger stored beneath my coping pattern of complacent understanding. People do the best they can to help in meaningful ways, I know. I just wish all the disabled children would say to their helpers: "Before you do anything else, just listen to me."
We must listen to both the verbal and non-verbal messages expressed by someone who may or may not want help. We must use this information to guide our actions and increase our sensitivity. It doesn't sound like much, but the ramifications are enormous. It is often during times that we are hell-bent on helping that we listen least well. We all know stories about people with visual impairments being forcibly "escorted" over crosswalks by well-meaning pedestrians, of people in nursing homes being fed when they are not hungry, of what the participants in the Dembo study aptly called "unexpected attacks" of help.
You know, I've always felt guilty when I've reacted with ingratitude and resentment to people who were "hell-bent on helping." But after reading this article, I am better able to understand why.
Here's a real-life example. A few days ago a person I know was talking to me about how he'd been helping a recently disabled friend by building handrails and running errands. He mentioned that the helpee had asked how much was owed for this work, but he had magnanimously declined to accept payment. And yet, he confessed, he was now feeling resentful and taken advantage of because the helpee "hadn't been insistent enough on paying." He said the helpee had thanked him several times for being such a good friend, but he now felt that this "wasn't enough gratitude."
Ayiiiii!!! My blood runs cold at the very thought of this toxic passive-aggressive martyrdom shit. All the hidden agendas, the secret trap doors, the tangled knot of attached strings, the invisible price tags! How much do I owe you for helping me? Oh, nothing! But the truth so often is, in the famous words of J. P. Morgan: If you have to ask, you can't afford it.
A "helpful" pitcher plant on my back porch generously offers sweet nectar to the hungry flying insects in my neighborhood.
This lesson was driven home to me the very next day when the same person offered to do some minor repairs to my house. Midway through the project it became clear that because he was "busting his butt doing me a favor" he felt entitled to rudely order me around, bark commands at me, harshly criticize me for not doing things exactly as he wanted, and forbid me to take food and bathroom breaks when I desperately needed them. I had agreed beforehand to pay for the materials and assist a little here and there when needed, but he had neglected to inform me that I would also be expected to pay for the favor by humbly allowing him to completely commandeer my time and attention at his whim for the duration and abuse me like a slave. Oh and and of course I was supposed to be eternally grateful for the privilege. Sheesh. You bet that's the last time I'm going to accept "help" and "friendship" from that person.
But the sad thing is, a bad experience like this also makes me reluctant to accept help from anyone. Sure, maybe this was an exception, maybe he was only having himself a bad jerkitudinal day, or inflicting his own rare personality disorder, or some atypical thing. Maybe it has nothing at all to do with the intrinsic imbalances of the helper-helpee dynamic. But then again maybe this situation was just a grotesque amplification of the very pitfalls--what Kunc and Van der Klift call "the underlying demeaning messages," the forfeiture of dignity and self-determination, the boundless debt of gratitude--that always exist in such relationships but are usually more tactfully sugar-coated and concealed.
I'm sorry I don't have any magic answers on how to gracefully and effectively give and receive help. Obviously it's a hugely complex issue and I'm still in the midst of grappling with it myself.
Though I'm not up against the cancer itself at the moment, I am still staggering and reeling with its aftereffects: debilitating fatigue and neuropathic pain caused by extensive nerve damage; ongoing depression and anxiety; frustrating attempts to deal with an unresponsive and inadequate public health care system; and a severe financial crisis entailing the loss of my home, income, life savings, and any future eligibility for affordable health insurance. And of course the constant terror that the cancer is going to come back at any moment.
This shit is enough to make anybody drift up to the high-altitude nosebleed seats on the Holmes-Rahe Life Event-Stress Scale, you know? I could probably use a little genuine help right about now. But it's exactly as Kunc and Van der Klift said: "People with disabilities sometimes do need help. However, if they are uncomfortable receiving it, as most of us are, they are left in a classic "no win" position of either doing without help or enduring the underlying demeaning messages."
So I'm struggling along, caught between the proverbial rock and hard place. And honestly, at this point, the most helpful thing anybody can possibly do is just listen and read and reread, as many times as it takes to genuinely understand the whole hideous dilemma. Thank you all.
The author grapples and rambles while displaying an impressive head of newly sprouted hair.
Did you ever read that wonderful story called "Tear Water Tea," from the Owl At Home book by Arnold Lobel? In order to fix himself a cup of tearwater tea, Owl has to force himself think of sad things so he can cry enough tears to fill the teapot. A champion anthropomorphizer, he thinks of such heart rending tragedies as books that can't be read because some of the pages were torn out, mashed potatoes left on a plate because no one wanted to eat them, mornings that nobody saw because everybody was sleeping. Next thing you know the pot is full of tears. It's a wonderful little fable.
If I ever wanted to make myself some tearwater tea, I have three personal triggers that are absolutely guaranteed to make me weep big salty tears by merely thinking about them: saying goodbye to my sons at the airport; the Abraham Lincoln Brigade; and old dogs.
Excuse me a moment, I can barely see to type. [snffle]
Anyway, the subject of old dogs has been on my mind a lot lately, because my beloved Dixie Rae is noticeably getting on up there. Since she's a rescue dog--I adopted her from a rescue group that took her in when somebody found her abandoned in a dumpster--I'm not sure of her exact age. I'd guess it's somewhere between 12 and 15. She's 98% deaf, her eyes are starting to cloud over, she has arthritis in her hips, and there's only one molar left in her head so her tongue dangles out of the side of her mouth most of the time, collecting all kinds of lint and cat hairs and other disgusting schmutz. But she's still the most cheerful, loyal, intelligent, and shamelessly horny dog I've ever known. In spite of the arthritis, she still manages to spend several hours a day vigorously humping Mr. Bingles, her long-suffering teddy bear.
Yesterday my idol B. Dagger Lee wrote the most touching comment over at Twisty's on the subject of older dogs and their inevitable ailments, in response to a post about Twisty's 13 year old Zippy who has just undergone emergency surgery for an extremely dangerous condition called gastric torsion. Reading about poor Zippy, and then this BDL comment just about did me in. B. Dagger Lee said:
"As I’ve been saying to Miss Patsy for the last three years as her ancient poodle tramps over us all night long and pees on his feet: After 12 years, every day is frosting and gravy my dear, frosting and gravy."
Indeed. So before I drown myself in tear water tea, I 'd like to dedicate today to a celebration of my beautiful Dixie Rae, and all old dogs everywhere. Do y'all want lemon or kleenex with your gravy and tea?
Dixie Rae (left) with her loyal companion Dolly Louise
Dixie Rae enthusiastically humping the ever-compliant Mr. Bingles.
Dixie Rae's life is a bed of roses.
Dixie (left) and Dolly (right)
Bathing beauty shows off her girlish figure in a hot pink bikini
The Mona Dixie Smile captured by the artist in residence
Dixie Rae shaved her head in solidarity during my chemo
Dixie Rae even wore an embarrassing wig in solidarity during chemo.
Dolly (left) and Dixie (right) gave me lots of moral support when I was sick.
Dixie Rae makes sure it's really me under that stupid wig.
Dixie Rae swings!
Dixie Rae sports some serious PRODUCT!
Dixie Rae and Dolly Louise curled up patiently at my feet as I write this post today.
I went to the hospital yesterday happily believing I was going to have my hideous port removed. I had been counting the days since I made the appointment for the surgery six weeks ago, eager beyond words to get this ugly uncomfortable protuberance cut out of my chest wall. Especially because I can't get back to lifting serious weights as long as it's dangling its big thick dangerous catheter into my superior vena cava.
But alas, it turned out this long awaited moment was only to be a consultation with a surgeon to obtain approval to have the damn thing yanked out. The actual removal is still many weeks away.
I was seriously bummed, to say the least. This is just one of the many drawbacks of the public charity hospital: nothing is ever simple, nothing is ever quick, nothing ever goes smoothly, everything is always wrapped in five thousand layers of sticky inefficient red tape. But at least I did get the approval, and the surgeon, who was disconcertingly young and hot, had a wry sense of humor and actually treated me like an intelligent life form.
I don't have any say in when I will finally have the thing taken out, the hospital is going to send me an arbitrary appointment in the mail. It will probably be a few weeks, but possibly a few months or more. Big drag.
But! Just look at the front yard that greeted me when I came home. One can only wallow in bitter disappointment for so long when surrounded by this riot of exuberant technicolor:
A single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out.
