Cancer Update June 2011
When things are good I tend to forget the bad, and put aside the awful past experiences. Today is good. I feel well. Still have the aches and pains of aging, of chronic back pain, of occasional hot flashes, of every day little sores—for example, I burned the roof of my mouth on a cheese sandwich bitten into too soon after coming out of the oven; the blisters are annoying. There is the cuticle tear on my right thumb that really smarts when I squeeze a lemon. There are my creaky joints, a wobbly knee, a loose ankle reminding me that I am 56 not 28. And there’s the seven itchy mosquito bites I got while in the backyard. I also think I need a stronger eyeglass prescription (What does the baseball scoreboard say, who’s winning?).
Here I am one year and a month after cancer treatment—my hair fully grown back, no restrictions on lifestyle, no excessive exhaustion or nausea; even the numb fingertips of peripheral neuropathy has gone away. The formerly scarlet “A” stitched on the upper left side of my chest where the port was, is now a faint shade of white, almost imperceptible (I love my surgeon!).
I have none of the physical sensations that originally warned and shouted: “Hey something’s not right here,” that urged me to go to my doctor.
I saw that same doctor today. First time in four months, an appointment with Dr. George, a periodic exam, and something I suspect will be a regular routine for life, like dental cleanings. I can only hope oncologist visits are spread out further apart, will rarely call for CAT scans, and will always show that the cancer has not returned.
I live with that uncertainty. As long as I feel well, I do not worry. But I have yet to pass a day without remembering that I had cancer. There is always something to remind me: an American Cancer Society ad on TV; noticing one of the radiation tattoo marks on my hips; receiving an email from some cancer medical or support group; coming across, in a dresser drawer, one of the head scarves I used to wear when I lost my hair. I just want to get on with life and put away that episode.
I once heard a blind man talk about his visionless life; he said when he wakes up in the morning he does not think, “Oh yeah, I’m blind.” It is an unquestioned part of him.
I admired that man for dealing with his handicap. For continuing with his life without drama over his disability. For forgetting that he is blind. Of course it’s not a life-threatening situation like my cancer could have been, but I too wanted to be like that man and forget that I had cancer, worrying that it might come back.
As I thought these thoughts, wishing I could forget, it struck me — No, I don’t want to forget. I want to wake up every morning and remember.
Remember that I was once miserable, that I was once bald and sick and weak, that I was down to 92 pounds and struggled doing daily activities.
I hope I don’t forget. I want to remember every day that I had cancer. And never take for granted feeling well. It puts into perspective the inconveniences and other “bad” things in life. By forgetting the ordeal, I may forget how wonderful it is to feel the aches and pains of normal aging.
I just got back from Dr. George’s office. He insists on a CAT scan next October, four months from now, a blood test too and another office visit with him to sort out the results. He says I am fine now and am doing everything right. My iron count is low due to the radiation treatment — it affected the lower spine, the red-blood cell, bone-marrow manufacturing plant, so to speak. There’s nothing to do about it, no diet changes or supplements to take. It’s just the new me, a little less delicious, possibly discouraging vampire attacks. But today I’m healthy enough to outrun zombies.
Dr. George said these first couple/three years are the crucial ones — 25% chance that the cancer could come back — the peak, and then the chances diminish as time goes on, though the possibility of cancer returning never really goes away. That is why he wants the scan and says it is the most effective means for seeing cancer cells rather than an MRI or an ultra-sound. I couldn’t argue, and I didn’t refuse. I’ve scheduled the procedure for Oct. 14.
For now, I may relax a bit, not worry about these future appointments. However, over the next four months, and beyond, I hope to take joy in these good times, the better health, and rejoice as I gain strength, never to take for granted that I am in the present, as I leave the awful past behind me.
Sunday, June 26, 2011
Friday, July 2, 2010
Entitlement
State troopers have the right to tell you to pull over and get out of your car without question. They have the badge.
A military veteran who has been decorated with a medal of honor has the right to express his or her service experience without political correctness.
And in a somewhat parallel way, I have entitlement to my disease, cancer. I wear no medal, have no badge; but there are some markings—a port scar and lymph nodes that will never appear normal size again on a CAT scan.
I have declared the right to discuss cancer in any way that I want to. I’m permitted to joke about it, scorn it, cry over it, commiserated with fellow cancer survivors.
During the hair-losing stage of chemotherapy, I was allowed to run my fingers through my hair and pull wads of loose curls out, and later reveal my bald head in public if I wanted to, even if I didn’t want to when a gust of wind caught my scarf once.
I wrote about my cancer, blogged about it, sent updates to friends and family regarding my experience with the disease, wrote a poem a day about it . . . because it had me at the throat, (well, not throat cancer, but check your metaphors) . . . it was life-threatening and I coped with the physical distresses by claiming my right to whine if I wanted to, and ask my family to do the household chores I wasn’t up to doing. I was able to take time off from work without question (only a doctor’s note), and take drugs. I was even offered a prescription to the marijuana pill form to fight nausea (I didn’t, but I thought that would have been pretty cool to say I get my pot legally).
Common sense tells us that life isn’t always fair, but I never said “why me.” I just dealt and preferred having an innocent DNA mutation than playing the blame game. No one, including myself, was at fault for giving me this disease. If it was something in the water, then my neighborhood would prove an epidemic. But that wasn’t the case. I was actually glad that if cancer were to strike anyone in my family, I was the best candidate, the one best able to cope with the life disruption.
I couldn’t wish it away, I just did what my doctors told me to do. “Another PET Scan? Sure, I’d love to.” “Blood test? Pick a vein.”
Not everyone will take my jokes well. For instance, my daughter misunderstood a casual remark I made, and haven’t I put her through enough with a sick mother?
To explain, my daughter was graduating college and at the same time having an art exhibit of her works at the local library. I offered my home for a combo graduation party and after the art show reception. I left it to her to invite her friends and teachers. And then on Face Book I saw her invitation was sent to 99 people. My home would be stretched to accommodate that many people not to mention feeding them all.
And I wrote on her Face Book wall: “You've invited nearly 100 people!...I think I shall go insane, and one cancer atom is gaining strength.” Sarcasm was the aim.
She responded: “What does that mean Mom?” She was serious.
I didn’t mean to freak her out. I had to explain just that, and learned I had to watch my morbid sense of humor, even with those who know me, particularly in print medium where expressions and voice tone are not evident. As a writer, I know how the written word can be misread, misinterrpreted, and misguided. I was misguided here. Think before you speak or hit the send key, before you take something dreadful and play with it.
There is a saying that the difference between tragedy and comedy is time. So far, the treatment prevented tragedy or my demise. But my hair is just growing back, a reminder to others of my ordeal. More time is needed to heal, not only for me, but for those subject to my off color comments.
I’ve learned that even with the right to make cancer jokes if I wish, I also have a responsibility with my entitlement.
I am a symbol of survival, showing my friends and family that a diagnosis of cancer isn’t necessarily a death sentence; and our charitable donations to the cause may be worth the scientific research.
My sister said to me the other day, seeing what I went through and the outcome, has taken her fears of cancer away. It’s beatable in many instances. Now she just dreads the debilitation of old age, noting that by undergoing treatment, I gave away my chance to avoid that situation. Now who’s joking?
A military veteran who has been decorated with a medal of honor has the right to express his or her service experience without political correctness.
And in a somewhat parallel way, I have entitlement to my disease, cancer. I wear no medal, have no badge; but there are some markings—a port scar and lymph nodes that will never appear normal size again on a CAT scan.
I have declared the right to discuss cancer in any way that I want to. I’m permitted to joke about it, scorn it, cry over it, commiserated with fellow cancer survivors.
During the hair-losing stage of chemotherapy, I was allowed to run my fingers through my hair and pull wads of loose curls out, and later reveal my bald head in public if I wanted to, even if I didn’t want to when a gust of wind caught my scarf once.
I wrote about my cancer, blogged about it, sent updates to friends and family regarding my experience with the disease, wrote a poem a day about it . . . because it had me at the throat, (well, not throat cancer, but check your metaphors) . . . it was life-threatening and I coped with the physical distresses by claiming my right to whine if I wanted to, and ask my family to do the household chores I wasn’t up to doing. I was able to take time off from work without question (only a doctor’s note), and take drugs. I was even offered a prescription to the marijuana pill form to fight nausea (I didn’t, but I thought that would have been pretty cool to say I get my pot legally).
Common sense tells us that life isn’t always fair, but I never said “why me.” I just dealt and preferred having an innocent DNA mutation than playing the blame game. No one, including myself, was at fault for giving me this disease. If it was something in the water, then my neighborhood would prove an epidemic. But that wasn’t the case. I was actually glad that if cancer were to strike anyone in my family, I was the best candidate, the one best able to cope with the life disruption.
I couldn’t wish it away, I just did what my doctors told me to do. “Another PET Scan? Sure, I’d love to.” “Blood test? Pick a vein.”
Not everyone will take my jokes well. For instance, my daughter misunderstood a casual remark I made, and haven’t I put her through enough with a sick mother?
To explain, my daughter was graduating college and at the same time having an art exhibit of her works at the local library. I offered my home for a combo graduation party and after the art show reception. I left it to her to invite her friends and teachers. And then on Face Book I saw her invitation was sent to 99 people. My home would be stretched to accommodate that many people not to mention feeding them all.
And I wrote on her Face Book wall: “You've invited nearly 100 people!...I think I shall go insane, and one cancer atom is gaining strength.” Sarcasm was the aim.
She responded: “What does that mean Mom?” She was serious.
I didn’t mean to freak her out. I had to explain just that, and learned I had to watch my morbid sense of humor, even with those who know me, particularly in print medium where expressions and voice tone are not evident. As a writer, I know how the written word can be misread, misinterrpreted, and misguided. I was misguided here. Think before you speak or hit the send key, before you take something dreadful and play with it.
There is a saying that the difference between tragedy and comedy is time. So far, the treatment prevented tragedy or my demise. But my hair is just growing back, a reminder to others of my ordeal. More time is needed to heal, not only for me, but for those subject to my off color comments.
I’ve learned that even with the right to make cancer jokes if I wish, I also have a responsibility with my entitlement.
I am a symbol of survival, showing my friends and family that a diagnosis of cancer isn’t necessarily a death sentence; and our charitable donations to the cause may be worth the scientific research.
My sister said to me the other day, seeing what I went through and the outcome, has taken her fears of cancer away. It’s beatable in many instances. Now she just dreads the debilitation of old age, noting that by undergoing treatment, I gave away my chance to avoid that situation. Now who’s joking?
Tuesday, April 27, 2010
Lions and Tigers, Oh My
The doctor says I can go on safari. My oncologist happens to be going on one himself, and tells me in his way that I have no restrictions now, even my red blood cell count is good to go on safari, no more iron pills necessary.
Dr. George won’t give me the “clean bill of health” just yet. He’s cautious but indicates that treatment has worked thus far. Any minor discomforts I still have (a nagging cough; lingering queasiness; an esophagus that feels like an unchewed potato is living in it; the occasional internal pinch at the biopsy site; the bumpy, itchy, rectangular shaped rash on my back where the radiation beams struck) should all fade away shortly, like a perturbed rhino losing interest and wandering off for other fields.
He said I should feel great in a year (a year? I want now, of course).
But then he’s cautious. He won’t let me out of his sight for too long, although the stretches of tests and visits will space out over time. Now I’m scheduled to see him in six weeks following another CAT scan and blood test. I am not surprised. He has to see what the five weeks, or 25 radiation zappings have done to the swollen lymph nodes that started all of my cancerous escapades. Although he insists I’m cancer free, he wants to make sure I stay that way.
I comply even if he doesn’t invite me along on his African trip. I’ve already had to cancel one trip to visit my aunts and uncles in Connecticut due to the sudden need for radiation therapy. I’m weary to reschedule too soon. There’s also a writers workshop in Iowa, and a visit to see my sisters-in-law in Brooklyn over the next few months that I hope to make. That’s about as safari as I’m going to get, and that’s fine with me. I’ve already come face-to-face with something as wild as lions and tigers. I let Dr. George be the tamer, the whip and chair in his hands.
Give me a trip to the zoo and I’ll be happy.
Dr. George won’t give me the “clean bill of health” just yet. He’s cautious but indicates that treatment has worked thus far. Any minor discomforts I still have (a nagging cough; lingering queasiness; an esophagus that feels like an unchewed potato is living in it; the occasional internal pinch at the biopsy site; the bumpy, itchy, rectangular shaped rash on my back where the radiation beams struck) should all fade away shortly, like a perturbed rhino losing interest and wandering off for other fields.
He said I should feel great in a year (a year? I want now, of course).
But then he’s cautious. He won’t let me out of his sight for too long, although the stretches of tests and visits will space out over time. Now I’m scheduled to see him in six weeks following another CAT scan and blood test. I am not surprised. He has to see what the five weeks, or 25 radiation zappings have done to the swollen lymph nodes that started all of my cancerous escapades. Although he insists I’m cancer free, he wants to make sure I stay that way.
I comply even if he doesn’t invite me along on his African trip. I’ve already had to cancel one trip to visit my aunts and uncles in Connecticut due to the sudden need for radiation therapy. I’m weary to reschedule too soon. There’s also a writers workshop in Iowa, and a visit to see my sisters-in-law in Brooklyn over the next few months that I hope to make. That’s about as safari as I’m going to get, and that’s fine with me. I’ve already come face-to-face with something as wild as lions and tigers. I let Dr. George be the tamer, the whip and chair in his hands.
Give me a trip to the zoo and I’ll be happy.
Saturday, March 20, 2010
Like a Pork Belly Roast, Cook Me Until Done
Just when you think the worst is over, when hair is slowly returning, (eyebrows must be plucked again)...nooooo...the doctor says the tumor has shrunk but not enough to make him happy. There could be cancer at a molecular level at the site. It's a precautionary measure that follows. Radiation.
At first my new doctor, a nuclear oncologist, said I'm to undergo 30 zappings, but now he's reduced treatments to 25 after he ordered yet another CT scan. So I have a new regimen added to my daily routine: radiation everyday for the next five weeks, weekends off.
Two treatments down, 23 to go. Or so I hope it is not pushed back up to 30.
Close to my spine near my kidneys is where the swollen lymph nodes reside. That is where the radiation beams are directed. The radiation technician (who happens to be my neighbor, Brian...small world) gave me my first ever tattoos, one on either side at the waist. These little black dots are guides, along with my belly button, for taking proper aim.
Getting those specks hurt, like getting a dull needle poked through me. I can't imagine having a rose or butterfly or "I Love Mom" inked into my flesh. At least these blend in along with my natural moles and beauty marks; imposters, barely noticeable but forever engraved reminders of this ordeal.
I am directed to a large room at the cancer clinic. It is mostly empty space, except for the monster machine in the center and the uninviting slab of a bed underneath. I lie down on the hard bed, arms overhead in tray-like vices. I'm told to expose my abdomen, from the lower rib cage to a few inches below the navel. I comply. I want to be the best patient ever, and have those plutonium beams hitting the right places. The doctor had said that they will avoid the kidneys that would, (his word) "die" if radiated. Instead the beams are forced through other healthy organs, the lower stomach and the intestines, to get to the bad guys.
This may result, I was warned, in side effects including nausea, vomiting, diarrhea and fatigue. No overall hair loss as with chemo, but I may get a sunburn on my back and belly, where the beams strike. I'm told to premedicate with anti-nausea pills. I'm told to take over-the-counter anti-diarrhea medication if that side effect gets me. I'm told to give up sit-ups or crunches over the course of the treatment, but otherwise exercise as I feel up to it. And sleep if I'm tired.
Lying on the slab, Brian tells me to stay still, breath normal, and relax. “Relax, just relax,” he says too many times. Then I'm left alone in the dimly lit big room, just me and the monster machine that moves above and below me. It makes buzzing noises. Its arms have windows that open and close. It points a red line of light on me and presumably zaps me. I feel nothing except like I'm in a science fiction movie, trapped on the alien mother ship. Or maybe I'm in a James Bond film, and Dr. No has me strapped to a laser-cutting machine, torturing me for the pure evil of it.
And then it's over. The End has popped onto the screen as Brian returns to the room, tells me I can get up after he lowers the hard bed closer to the floor. It's fast, maybe five or ten minutes and I'm done till next time.
More tests like CT and Pet scans and blood drawings are in my future; and 23 more dates with my neighbor in a most unlikely place. I'll never look at Brian the same way now if I see him mowing his lawn or putting up or taking down his outdoor Christmas decorations, or if I bump into him if we happen to retrieve mail from our joined mailboxes at the same time. He's not just a neighbor anymore who teasingly flirts and always has a smile for me. He's part of this alien life I've been living the past seven months. And he's now part of the team of men and women who've come into play for saving my life.
At first my new doctor, a nuclear oncologist, said I'm to undergo 30 zappings, but now he's reduced treatments to 25 after he ordered yet another CT scan. So I have a new regimen added to my daily routine: radiation everyday for the next five weeks, weekends off.
Two treatments down, 23 to go. Or so I hope it is not pushed back up to 30.
Close to my spine near my kidneys is where the swollen lymph nodes reside. That is where the radiation beams are directed. The radiation technician (who happens to be my neighbor, Brian...small world) gave me my first ever tattoos, one on either side at the waist. These little black dots are guides, along with my belly button, for taking proper aim.
Getting those specks hurt, like getting a dull needle poked through me. I can't imagine having a rose or butterfly or "I Love Mom" inked into my flesh. At least these blend in along with my natural moles and beauty marks; imposters, barely noticeable but forever engraved reminders of this ordeal.
I am directed to a large room at the cancer clinic. It is mostly empty space, except for the monster machine in the center and the uninviting slab of a bed underneath. I lie down on the hard bed, arms overhead in tray-like vices. I'm told to expose my abdomen, from the lower rib cage to a few inches below the navel. I comply. I want to be the best patient ever, and have those plutonium beams hitting the right places. The doctor had said that they will avoid the kidneys that would, (his word) "die" if radiated. Instead the beams are forced through other healthy organs, the lower stomach and the intestines, to get to the bad guys.
This may result, I was warned, in side effects including nausea, vomiting, diarrhea and fatigue. No overall hair loss as with chemo, but I may get a sunburn on my back and belly, where the beams strike. I'm told to premedicate with anti-nausea pills. I'm told to take over-the-counter anti-diarrhea medication if that side effect gets me. I'm told to give up sit-ups or crunches over the course of the treatment, but otherwise exercise as I feel up to it. And sleep if I'm tired.
Lying on the slab, Brian tells me to stay still, breath normal, and relax. “Relax, just relax,” he says too many times. Then I'm left alone in the dimly lit big room, just me and the monster machine that moves above and below me. It makes buzzing noises. Its arms have windows that open and close. It points a red line of light on me and presumably zaps me. I feel nothing except like I'm in a science fiction movie, trapped on the alien mother ship. Or maybe I'm in a James Bond film, and Dr. No has me strapped to a laser-cutting machine, torturing me for the pure evil of it.
And then it's over. The End has popped onto the screen as Brian returns to the room, tells me I can get up after he lowers the hard bed closer to the floor. It's fast, maybe five or ten minutes and I'm done till next time.
More tests like CT and Pet scans and blood drawings are in my future; and 23 more dates with my neighbor in a most unlikely place. I'll never look at Brian the same way now if I see him mowing his lawn or putting up or taking down his outdoor Christmas decorations, or if I bump into him if we happen to retrieve mail from our joined mailboxes at the same time. He's not just a neighbor anymore who teasingly flirts and always has a smile for me. He's part of this alien life I've been living the past seven months. And he's now part of the team of men and women who've come into play for saving my life.
Wednesday, January 27, 2010
No Last Dance for Me
Update for Chemo 6.
Immediately after our appointment, the doctor sent me to the chemo room—the one where all the patients go, lounging in recliners having a merry old time hooked up to IV bags delivering the toxic juices.
I notice two newer women I’d seen at my fifth session; now both are bald. One is wearing a cute short blond wig. She’s visibly lost weight. The other is sporting a brightly colored, flowered bandana around her head. That’s a sure sign her blond hair of three weeks ago is gone. She still overfills the chair.
A third patient, an elderly lady with a slight Southern accent, is there again with her hand-holding husband. She’s having a hard time breathing and is wheeled to the main hospital for some tests. I never find out if she’s okay.
The doctor told me the administering nurses in the chemo room would do a dance for me as it’s my last scheduled treatment.
The 4-1/2 hour session was without fanfare, no dancing, no applause, no confetti tumbling down, no cake or presents, or bouquet of flowers. When I asked about the dance, the nurses laughed; like that ain’t gonna happen. One said, let the doctor do the dancing. I didn’t waltz out of there. Instead I was left with a gnawing worry.
It may very well have been the last treatment, but blood tests, CAT-scans and regular doctor visits are still on the agenda. And then of course healing and hair returning, and getting this port surgically removed. That will no doubt brighten the “Scarlet Letter A” already stitched in my skin.
But now creeps in a new situation: the fear of the beast returning. Is there a single cancer cell in Darwinian fashion immune to the killing toxins, lurking in some corner of a DNA molecule going undetected, laughing evil-ly at the attempts of modern medical science, waiting, just waiting to do its weird dividing dance and spread?
I am the survival of the fittest, a lucky one who caught early a curable cancer. Or have I? It is a fear that I suspect most cancer survivors live with. You just have to move on, go on, and keep in tune with the bodily warning signs that signaled something was off in the first place.
I feel a sort of kinship with other cancer patients and survivors. Like Corvette owners who join clubs. Or cat fanciers (sometimes you can see the fur meshed on their clothing). Or motorcycle riders (they nod or raise an arm to passing bikers on the road). Once the hair grows back, and the funky wigs, scarves, and caps are put away, how will we recognize one another, unless I join some cancer society group? No thanks. I haven’t so far. I had enough friend and family support to say I was lucky again not to need that.
But I’ve gotten spoiled by a husband who vacuums for me, a daughter who washes the kitchen floor every other week. And another daughter who shovels the drive and walkways.
I’ve gained strength already. I’m back to doing all the cooking and laundry duties, the grocery shopping, and general housework, easing back to routines. And in a couple of weeks as this last treatment fades from memory, and the residual nausea, nerve-ending tingling, insomnia and other side effects diminish, I’ll be back to full schedule at work.
Yes, I’ll be ready to join society without the nagging of the disease interfering with my life. The doctor said, in three weeks I’ll be able to eat from the common fruit bowl, enjoy raw vegetables and sushi bars, and double dip at all the parties again.
But as “normal” life returns with doctor visits and tests interspersed at expanding intervals, maybe I’ll see a woman outside of the oncologist’s office, in public, with a funky wig on, or a cap that reveals a too-bare neckline and typical sideburns missing. The kerchief will show no bulk of hair below or wisps sticking out. She won’t have eyelashes or eyebrows. Maybe she’ll have one of those pink-ribbon pins on her clothing. I’ll smile and nod to her like a fellow motorcycle rider even if she doesn’t get the message, even if she doesn’t understand that we travel a similar road. It will be my reminder to keep guard, keep watch if ever I have to return to the chemo lounge chairs where it’s sure no dance club.
Immediately after our appointment, the doctor sent me to the chemo room—the one where all the patients go, lounging in recliners having a merry old time hooked up to IV bags delivering the toxic juices.
I notice two newer women I’d seen at my fifth session; now both are bald. One is wearing a cute short blond wig. She’s visibly lost weight. The other is sporting a brightly colored, flowered bandana around her head. That’s a sure sign her blond hair of three weeks ago is gone. She still overfills the chair.
A third patient, an elderly lady with a slight Southern accent, is there again with her hand-holding husband. She’s having a hard time breathing and is wheeled to the main hospital for some tests. I never find out if she’s okay.
The doctor told me the administering nurses in the chemo room would do a dance for me as it’s my last scheduled treatment.
The 4-1/2 hour session was without fanfare, no dancing, no applause, no confetti tumbling down, no cake or presents, or bouquet of flowers. When I asked about the dance, the nurses laughed; like that ain’t gonna happen. One said, let the doctor do the dancing. I didn’t waltz out of there. Instead I was left with a gnawing worry.
It may very well have been the last treatment, but blood tests, CAT-scans and regular doctor visits are still on the agenda. And then of course healing and hair returning, and getting this port surgically removed. That will no doubt brighten the “Scarlet Letter A” already stitched in my skin.
But now creeps in a new situation: the fear of the beast returning. Is there a single cancer cell in Darwinian fashion immune to the killing toxins, lurking in some corner of a DNA molecule going undetected, laughing evil-ly at the attempts of modern medical science, waiting, just waiting to do its weird dividing dance and spread?
I am the survival of the fittest, a lucky one who caught early a curable cancer. Or have I? It is a fear that I suspect most cancer survivors live with. You just have to move on, go on, and keep in tune with the bodily warning signs that signaled something was off in the first place.
I feel a sort of kinship with other cancer patients and survivors. Like Corvette owners who join clubs. Or cat fanciers (sometimes you can see the fur meshed on their clothing). Or motorcycle riders (they nod or raise an arm to passing bikers on the road). Once the hair grows back, and the funky wigs, scarves, and caps are put away, how will we recognize one another, unless I join some cancer society group? No thanks. I haven’t so far. I had enough friend and family support to say I was lucky again not to need that.
But I’ve gotten spoiled by a husband who vacuums for me, a daughter who washes the kitchen floor every other week. And another daughter who shovels the drive and walkways.
I’ve gained strength already. I’m back to doing all the cooking and laundry duties, the grocery shopping, and general housework, easing back to routines. And in a couple of weeks as this last treatment fades from memory, and the residual nausea, nerve-ending tingling, insomnia and other side effects diminish, I’ll be back to full schedule at work.
Yes, I’ll be ready to join society without the nagging of the disease interfering with my life. The doctor said, in three weeks I’ll be able to eat from the common fruit bowl, enjoy raw vegetables and sushi bars, and double dip at all the parties again.
But as “normal” life returns with doctor visits and tests interspersed at expanding intervals, maybe I’ll see a woman outside of the oncologist’s office, in public, with a funky wig on, or a cap that reveals a too-bare neckline and typical sideburns missing. The kerchief will show no bulk of hair below or wisps sticking out. She won’t have eyelashes or eyebrows. Maybe she’ll have one of those pink-ribbon pins on her clothing. I’ll smile and nod to her like a fellow motorcycle rider even if she doesn’t get the message, even if she doesn’t understand that we travel a similar road. It will be my reminder to keep guard, keep watch if ever I have to return to the chemo lounge chairs where it’s sure no dance club.
Tuesday, January 19, 2010
The Clods One Meets
There's that look , a sort of sad, eye brows drawn together "Aww" of a nonverbal expression. Shall I call it pity? A sudden remembrance of "oh yeah, she's got cancer" look on the face? Others say with one glance, "she's diseased, maybe contagious, I can't deal with this"....but those are rare or harder to read.
And then some open their mouths with stupidity sprinkling out like a spit in the eye. And no matter if I try and dab the sputum away, the sting lingers, and amuses me. It's those awkward times when people don't know how to deal with a bald woman.
Now I don't parade my scalp to the world, but the caps or gypsy scarves are giveaways. The wig is much more acceptable, a real fooler for those folks who don't know me. This winter, sometimes the soft knit hat is just more comfortable to face the world hugging my head. I call my assortment of caps my head sweaters; they keep me warm.
I accompanied my husband to his ski club meeting last night, and in the course of 30 minutes got the gamut of glances from pity to scorn, to some heart-felt smiles. I take this in like an outsider; it's not me, it's this cancer side effect, this hairless alien that walks amongst us that people react to.
I had no makeup on so my eyes disappear without liner. Just green beads without lashes save one long single hair on the lower right lid that stubbornly holds its root. I wore head sweater number four the Jessie hat (from a favorite TV show), a velour -like charcoal gray and reversible black cap (with droopy, baggy Hot Topic boy pants could put me in gang apparel chic). So I wore the dark, snug cap and brightened it up with large gold hoop earrings for fun and went to the upstairs pub meeting room to see many long-time ski acquaintances.
There was that clod from the Christmas club ski party who took one glance and got as far away as possible from me (thank heavens....gotta love the power in that). There was the "you poor thing" look with a how are you feeling question; but that was fine and I said so and she's really sweet anyhow. There was the hugger, "glad to see you, you look great," now let's change the subject" which was fine with me too.
And there was the woman who told me she wished her hair would just fall out so she could start again with a new do. Sorry to say but she's blond. I couldn't come up with the right response as I was mildly shocked at the stupid blubbering coming out of her mouth, and any really good comeback wold have just been wasted between her ears. I know she meant well, but somehow that disconnect of brain and thought and the forming of words on the tongue just didn't come about for either of us.
She told me my hair might come back curly. I reminded her that I had naturally curly hair (she must have forgotten). So she corrected herself saying well it might come back straight then, and laughed. I said it will probably be a gray 'Fro but any hair was acceptable to me. And then she changed the subject telling me about her shopping day and how she overdid it and blah, blah, blah. But I soon found diversion and an escape, plus the ski club meeting was underway. Whew!
It reminded me of (sorry, another blond) a co-worker who seeing a silk kerchief covering my head at work one day, said "I wish I could wear scarves." I'm sure she couldn't read my expression right, one of confusion. "Just wear one," I told her. I don't see why having long blond hair should stop her. I can't figure out what she was trying to say, that I was lucky to be bald? Like the other woman, something just vomited out in an effort to try and say something nice, I suppose. And did either of them regurgitate what they said, kicked themselves later for blurting out nonsense? I'll never know.
And what am I trying to say here? Let me think. Yes, think. Take a little time and think before forming the words of whatever it is you really want to say.
And then some open their mouths with stupidity sprinkling out like a spit in the eye. And no matter if I try and dab the sputum away, the sting lingers, and amuses me. It's those awkward times when people don't know how to deal with a bald woman.
Now I don't parade my scalp to the world, but the caps or gypsy scarves are giveaways. The wig is much more acceptable, a real fooler for those folks who don't know me. This winter, sometimes the soft knit hat is just more comfortable to face the world hugging my head. I call my assortment of caps my head sweaters; they keep me warm.
I accompanied my husband to his ski club meeting last night, and in the course of 30 minutes got the gamut of glances from pity to scorn, to some heart-felt smiles. I take this in like an outsider; it's not me, it's this cancer side effect, this hairless alien that walks amongst us that people react to.
I had no makeup on so my eyes disappear without liner. Just green beads without lashes save one long single hair on the lower right lid that stubbornly holds its root. I wore head sweater number four the Jessie hat (from a favorite TV show), a velour -like charcoal gray and reversible black cap (with droopy, baggy Hot Topic boy pants could put me in gang apparel chic). So I wore the dark, snug cap and brightened it up with large gold hoop earrings for fun and went to the upstairs pub meeting room to see many long-time ski acquaintances.
There was that clod from the Christmas club ski party who took one glance and got as far away as possible from me (thank heavens....gotta love the power in that). There was the "you poor thing" look with a how are you feeling question; but that was fine and I said so and she's really sweet anyhow. There was the hugger, "glad to see you, you look great," now let's change the subject" which was fine with me too.
And there was the woman who told me she wished her hair would just fall out so she could start again with a new do. Sorry to say but she's blond. I couldn't come up with the right response as I was mildly shocked at the stupid blubbering coming out of her mouth, and any really good comeback wold have just been wasted between her ears. I know she meant well, but somehow that disconnect of brain and thought and the forming of words on the tongue just didn't come about for either of us.
She told me my hair might come back curly. I reminded her that I had naturally curly hair (she must have forgotten). So she corrected herself saying well it might come back straight then, and laughed. I said it will probably be a gray 'Fro but any hair was acceptable to me. And then she changed the subject telling me about her shopping day and how she overdid it and blah, blah, blah. But I soon found diversion and an escape, plus the ski club meeting was underway. Whew!
It reminded me of (sorry, another blond) a co-worker who seeing a silk kerchief covering my head at work one day, said "I wish I could wear scarves." I'm sure she couldn't read my expression right, one of confusion. "Just wear one," I told her. I don't see why having long blond hair should stop her. I can't figure out what she was trying to say, that I was lucky to be bald? Like the other woman, something just vomited out in an effort to try and say something nice, I suppose. And did either of them regurgitate what they said, kicked themselves later for blurting out nonsense? I'll never know.
And what am I trying to say here? Let me think. Yes, think. Take a little time and think before forming the words of whatever it is you really want to say.
Wednesday, January 6, 2010
Animals are OK, but I'd rather be PET-Negative
I’m PET-negative, and it’s true, I have no pets living in my house. The only non-human animals here are in my freezer. But being PET-negative is a very good thing besides nothing to walk or feed or clean up after.
Here is the latest news on my chemo treatment and progress. (I’m sending this blind copy to several friends and family.)
I saw the doctor yesterday (Jan. 5th) followed by the 5th chemo session. My last and 6th treatment is scheduled for Jan. 26. That’s right, the last one.
The very good news is that the PET-Scan I had last week revealed no cancer visible. Doctor called it PET-negative, and that result after the 4th treatment is a good sign for being cancer-free in the future. Unfortunately, the PET doesn’t show cells at the molecular level, that is why I still have to go through 6 chemo treatments. Originally he wanted me to undergo 8 treatments.
Also, the CAT-scan I had about 2 weeks ago, showed that the tumor I have in the lower abdomen toward the lower back, a mass of enlarged lymph nodes, sort of bundled together, have shrunk from 9.5 cm to 5.6 cm.
After that 6th chemo session, there will be follow up visits every three months sometimes following Cat-scans. The doctor wants to be prudent scheduling CAT-scans (getting bad rap in the news lately because of the high X-ray exposure). But it is a good tool for the looking at the tumor.
The other good news, is all the weight I lost is on again putting me back to my normal 105 pounds. I’m still hairless of course (I even lost nose hair and my eye lashes!) but I don’t look like Gandhi or a 92-pound stick anymore. All the Christmas goodies contributed.
Nurse told me yesterday it might take 6 months before my hair grows back. Yikes! I might have half an inch on top by July, oh my. And the doctor said the tingling fingertips (peripheral neuropathy or nerve damage) may never go away. These are the trade-offs for stopping the disease.
Presently I deal with the side effects and drug regimen to combat nausea, insomnia at night, intestinal woes (but maybe that’s more information than you want to know). I just have to cope with fatigue in the day, metal taste in the mouth, pains in my arms and legs and occasional shooting, jabbing pain on my left side also caused by nerve damage. But these things should go away after therapy is complete.
No one said this was going to be fun. But by the middle of February, by Valentines Day, I should be feeling pretty good again . . . except Paul will be away on a ski trip then. We’ll just have to make up for it and celebrate when he gets home.
Here is the latest news on my chemo treatment and progress. (I’m sending this blind copy to several friends and family.)
I saw the doctor yesterday (Jan. 5th) followed by the 5th chemo session. My last and 6th treatment is scheduled for Jan. 26. That’s right, the last one.
The very good news is that the PET-Scan I had last week revealed no cancer visible. Doctor called it PET-negative, and that result after the 4th treatment is a good sign for being cancer-free in the future. Unfortunately, the PET doesn’t show cells at the molecular level, that is why I still have to go through 6 chemo treatments. Originally he wanted me to undergo 8 treatments.
Also, the CAT-scan I had about 2 weeks ago, showed that the tumor I have in the lower abdomen toward the lower back, a mass of enlarged lymph nodes, sort of bundled together, have shrunk from 9.5 cm to 5.6 cm.
After that 6th chemo session, there will be follow up visits every three months sometimes following Cat-scans. The doctor wants to be prudent scheduling CAT-scans (getting bad rap in the news lately because of the high X-ray exposure). But it is a good tool for the looking at the tumor.
The other good news, is all the weight I lost is on again putting me back to my normal 105 pounds. I’m still hairless of course (I even lost nose hair and my eye lashes!) but I don’t look like Gandhi or a 92-pound stick anymore. All the Christmas goodies contributed.
Nurse told me yesterday it might take 6 months before my hair grows back. Yikes! I might have half an inch on top by July, oh my. And the doctor said the tingling fingertips (peripheral neuropathy or nerve damage) may never go away. These are the trade-offs for stopping the disease.
Presently I deal with the side effects and drug regimen to combat nausea, insomnia at night, intestinal woes (but maybe that’s more information than you want to know). I just have to cope with fatigue in the day, metal taste in the mouth, pains in my arms and legs and occasional shooting, jabbing pain on my left side also caused by nerve damage. But these things should go away after therapy is complete.
No one said this was going to be fun. But by the middle of February, by Valentines Day, I should be feeling pretty good again . . . except Paul will be away on a ski trip then. We’ll just have to make up for it and celebrate when he gets home.
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