hair woes

i know nothing stays the same
but if you're willing to play the game
it will be coming around again

i woke late this morning.  my red headed aunt, the one who i was told maybe wouldn't pay a visit during these chemos, burst through the door last evening.  i got nauseous, and achy..... i was even aching around my port.  it's funny how pain will find all your weaknesses, and magnify them.

i started to comb my hair with my fingers.  (still digging this shorter hairstyle... it's fun to poof up, and swing from side to side......)

a big handful of hair came out.

ok, let me be more exact.  more hair than usual.  i've got a lof of hair.  thick, and ornery.  i know it's going to take a-while before there are bald patches.  the oldest said that he could see more of my forehead, sort of like a middle aged man with a receding hairline.

it's just hard seeing more and more hair come out with each combing.  and it's hard to know when to stop....especially in the morning when you're trying to go somewhere, and you can't because you're waiting for your hair to stop raining down.

"it means the chemo is working."

i knew that when i felt the tumour shrink.  do i really need any more reminders?

"it will grow back."

in like ten thousand years.

"no.  it will probably start after the fifth chemo."

i know.  but do you know how forever and a day that sounds?

"i worry about your sense of time."

i'm a poet.  this goes with the territory.

i have scarves.  i have funky slouch hats from hot topic.  i have a buff.  i'm going to get two special scarves soon, to combat the blues.  i'm set up and prepared for telly savalas land......

....but i guess i forgot to prepare my heart.




oh blanche.  stop blubbering.

military maneuvers

i thought to-day was going to be difficult.

i had to get middle man to his drama class in the morning. usually, that means taking him, and waiting with the youngest at a bagel shop. well, yesterday, i was so tired that i wasn't even able to drive to the library down the block without becoming dizzy, and very tired. so i was a bit in a panic.

right now, i'm sitting with the youngest at the bagel place. the writer girl is with me, but she didn't have to drive us here. we're soon to pick up middle man, and go home. i will probably be very tired by then....but i made it.

it all worked out.

writer girl will drive home. i can already feel the cold chill of fatigue in my arms, and on my face. but, luckily, the grip of prednisone has loosened. i can tell by how itchy my skin is. i can tell by how tired i get after being excited.

i can tell because hope is coming back.

if i can learn to control the effects of these drugs.... if i can be realistic, and learn to be quiet when i feel panicked.... if i can keep to myself when i feel my most manic, then maybe i can live through this without losing everyone....

if if if

goals for to-day: get home without crashing. pay a couple of bills. take a nap outside when the sun is the most warm.

try not to worry about what i've done.... and get to the business of finding me....

hope.

after prednisone

i was very worried that the days without prednisone would be harrowing. luckily, it wasn't as bad as i pictured it.

i woke saturday edgy, and wanting. i took my multivitamin, and ativan, and it brought the jitters down. i was still able to do what i needed to do (spend two hours with the at&t people, and the t-mobile representatives) but i was weak afterwards.

that night, i had intense lower back pain. i took a warm bath for an hour, and tried my best to think of everything else but what was wrong. it finally subsided, and the heat and the ativan sent me to deep slumberland.

to-day, i've don't nothing but lie down, and sleep. i wish the weather was better. i would have been outside ....sleeping, but still getting that vitamin d. i'm not supposed to lounge like this all the time, but i need to obey my weariness now.

the youngest is coughing, and hiding from me. i want to tell him it's ok, and that he doesn't have to worry so much, but i can't say that for certain. i can't even take a tylenol without worrying what it will do to me.

i just want it over. i want to be well.... i worry that whatever the chemo does to me will be worse than the cancer. i worry that i'm on a downhill slope of health, and that for the rest of my life i have to look over my shoulder, hoping the plague isn't trying to catch up to me.

and yet,i'm glad it's me. i'm glad i was the lightning rod in this. if i can be the only one in my circle of family and friends that gets this, then i will gladly take the punishment, and carry it away from them all.

i want to protect, and still be protected. even still.

helpless

i didn't think i was going to write this out...but i suppose i should.

when i got my port accessed at the first chemo, the nurse rubbed a sanitizing solution on it... quite roughly. she told me that the strips that held the wound to-gether should have started coming off by now, and that i should not be afraid to scrub it off.

after my chemo, when they took out the needle, i started bleeding from the incision. the male nurse put pressure on the area twice to stop the bleeding, then told me that the steri-strips had a mind of their own, and they knew exactly when to fall off, and that i shouldn't worry.

i went home, took a long bath, and the strips fell off, taking with it one of the stitches.

i was told to call about anything that bothered me. (especially if it had to do with infection.) the nurse encouraged me to come in to get it looked at. said she wouldn't even have it charged as an office visit. just come in... and let her take care of it.

so i did.

i dropped the kids off at an origami event at the library, and went in. she took a look at it, said it wasn't infected, and took the time to put many more steri-strips on the wound. she told me that the scar would be thicker on one side than the other, which didn't faze me. (i've got scars inside and out.... it'll be a pride mark one day.) she was glad to be doing some real nursing, instead of being the supervisor. (i totally understood that. it's sad that the better you get at helping people, the more they want you to teach others, and get away from the hands-on stuff you really love.)

when the nurse was done, i tried to stay in the presence of mind to thank her....but i was starting to feel weak. i am pretty sure i she didn't notice, but the moment i finished talking to her, i made a beeline to the bathroom.....

....where i stayed for the next forty-five minutes.

ever get a song stuck in your head? i had the worst one going over and over in my mind as i sat in the heavenly light of a totally clean white restroom....

can't we try just a little bit harder
can't we give just a little bit more
can't we try to understand
that it's love we're fighting for
can't we try just a little more passion
can't we try just a little less pride
i love you so much baby
that it tears me up inside

i giggle now, but then i seriously thought i wasn't going to get out of that bathroom on my own two feet. i was shaking, and.... well, i was very.... and then....

i wasn't doing so well.

....but, i got better. better enough to walk out....find the elevator... get inside.... get off...

...and sit in the first floor bathroom for twenty minutes. (hey, at least it was an improvement.)

eventually, the tummy spell ended. i was able to walk out without shaking, without stumbling, without trouble. i even thanked the receptionist for helping me before (she had been very stressed, and yet still helped someone who didn't have an appointment get to where she needed to go.)

the rest of the day had its sadness. the youngest had a bad cough, and slept for most of the day. everyone kept me away from him, which gave me a taste of how it was going to be. (please, please, please no summer colds!) my scalp is getting more achy, which means more yul brynner times for me..... but there was a sort of peace in sleeping when i needed to, and a couple of unexpected feelings to-night where i remembered i still was a pretty girl.... at least for now.

i want the beach so bad right now that i started a silly countdown to my last chemo..... that is, my last chemo if all is perfect, and i don't get sick, and nothing is delayed:

http://www.timeanddate.com/countdown/generic?iso=20140630T00&p0=402&msg=last+chemo

i know i shouldn't hope....but maybe it will motivate me to see the days tick past.... and yet i hope the lessons i learn during this take my eyes away from the clock....

how back and forth my feelings are now. more inconstant than ever....

it begins (part one of the hair saga)

this may be a bit premature.... but i need to write about my hair.

this was me in february 2013

i don't quite remember the circumstances behind this picture. i think i was in the car. it was a nice day with the sun going through the car windows beautifully... (i usually don't like looking directly at the phone camera. i usually have to be thinking of someone to do so.) this is a before cancer shot.







this was me in december 2013

it was the day when the library lost electricity because of one of our ice storms, which is why i look so pensive. (ok, forget that. i look pensive in almost all my selfies. i think i look goofy smiling.) this is when i had the lump under my arm, but i wasn't really worried about it, because it hadn't gotten big enough to where i couldn't bend my arm down.











this is me in march 2013

it was my last day at work, so i was doing a lot of soul searching , which is why i look so pensive. (yeah yeah...you've heard that one before....) i knew what i was facing, and i was sort of glad to leave work to do it. (i had been hiding things for so long, that the deception was starting to get weary.)

as you can tell, i got my hair cut in layers to help when i start going bald. interestingly enough, the stylist had to thin the tips with thinning shears to get it to layer better. (i have rebellious hair.) it's a nice bouncy cut, and it frames my face well, which is good, because i tend to hide in my hair.

i have a lot of hair... thick hair... and i'm hoping against hope that i don't get too bald, but i know that the drugs are very powerful. in fact, i can feel the tumour inside of me....and i know it's shrunk considerably. (i was told it would shrink 50% with each chemo, and i can feel the difference.)

so it goes without saying that the drugs will affect me in other areas....

there's no real reason to make a post like this. i just... love my hair. especially with the grey. (i was loving the cool silver streaks against the reddish parts of my dark brown hair that was starting to appear in my front bangs.) i like tossing it... hiding in it.... brushing it...moustaching it underneath my nose... all the impossibly girly things that one does when she's still young inside, and wants to stay young inside...

my hair is the body part that symbolizes the young part of me....

oh, well. i knew i was going to to do a hard re-boot of my system with chemo. this is one of the side effects. i just wish it wasn't a side effect so far out in front.

chemo one

we started with lab work.

we continued with weight, and temperature. i ended up having a fever (100.1), but they decided it was because of me getting used to the port, and they hustled me on through.

i had morning questions with the doctor. i found out that the goal of my chemotherapy is to be cured....not to keep me alive....not to prolong the agony...but to be cured. i knew that, anyway, but it was good to hear again. and again. (especially when she said i had an excellent prognosis.)

my doctor helped so much to-day. she answered all my questions, knowing that the more i know, the more i believe. she fixed my prescription right away (one of my drugs got filled... and i only got 1 pill in a bottle, with no refills, rather than 30 pills, with five refills. meh. these things happened.) the best thing she did was give me hope... a hug...and the promise that she was praying for me.

she's the best doctor i've ever had.... and i shouldn't have to say that. i should have had many good doctors on my side. when i get my next primary doctor, i will not settle for someone close by....but find someone who will listen, and help.

sorry... i digress...

we went to the chemo room. there were several little areas with a comfy laz-y-boy, two chairs, and a spot to put your stuff down on. oh, and the iv stand, as well. guess what? there were lots of windows, and lots of light. i was told i was going to be there all day. (that didn't bug me because i was already prepared for it.)

when they accessed my port, the nurse told me to take a deep breath, and that she was going to push against my chest. i think she was trying to get me to brace myself. i didn't feel a thing. the nurse was momentarily surprised, because she knows i've only had the port in for a few days. (and, truth be told, it doesn't look good...there's a bruise near the incision, and i still have the gauze tape on it.) luckily, i had done what they told me, and put the numbing medication on my port, and put a ziploc on top of that. (the closest thing i could get to "saran wrap."

then, they started the procedure..... (well, in actuality, i started the procedure in the morning, when i took my prednisone, and morning nausea pill before i came in.)


here is what they gave me:

a drug for nausea (i didn't hear the name)

benadrylj (for allergic reaction)...this gave me nervous legs. (a common occurrence) i walked around, and took pictures of the view, and that seemed to help a lot....the stretching, and all.

adriamycin (you eat ice with it, to prevent mouth sores. this drug is pushed through physically by a nurse) this is a good drug, used since the 1940's because it does what it's supposed to) there are four vials of this. (this is also the drug that makes the urine red.)

an hour of cyclophosphamide

two tylenol (for fever, just in case.... and aches)

then they check my vitals.... my temperature went down to 96.8! yay! my blood pressure was 104/58 with a 76 heart rate. it's wild to hear it be so low....but the nurse practitioner didn't seem to mind it...

rituxan (it ends up that this is made up of some mouse antibodies... and the benadryl will help against any allergies to the mouse.) they give it slow, to make sure i don't have any allergic reactions.

the benadryl finally kicked in, and i was snoozing for a-while. i also got to eat all my sandwich, which was a bad move. (i felt over-full... need to pace myself when it comes to food.)

my vitals get checked every 30 minutes... and once the top number was 76! the nurse said my heart rate was good, and i had no fever, but he made me sit up because i was maybe a bit... too relaxed... waking me up more gave me a better blood pressure of 103/61. (he said all was ok.... that that was what happened after a good rest. well, at least i know i can relax in odd situations...)

another time, with a different nurse, it was 96/60, but she didn't seem at all concerned. i don't know me anymore.... i can't even tell when i have a fever.

the last drug (the rituxan) went faster than the nurses thought it would. i got out an hour and a half sooner than i was quoted. i feel ...out of myself....and i would feel a lot better if i hadn't eaten that whole sandwich... (sorry, i repeat myself a lot... i did get nauseous, but a chewy candy called gin-gin helped a lot, as well as some peppermint tea.) but i have optimism, you know? if i hold still, do what they tell me, keep on top of the symptoms, and smile inside i'm sure to get better fast.

i miss me, but if this is a taste of what i'm in store of.... i'm not too far away.

here's hoping....

port placement-- the story

ok... let's try this again....

i went early to the hospital, having not eaten since midnight the night before. the financial people had already called me the day before, to get $150, so i didn't need anything but me and my identifications.

as before, we were guided by a senior citizen volunteer, who waked at a pretty good pace. he lead us down winding aisles of unused floors with seventies paint. we went to the lab, first, where the nurse took my blood to check my platelets. she asked why i was getting the port put in. "lymphoma." she physically winced, and apologized. i immediately said that things were ok, and that i was sure to be better after the chemo. (i do this all the time....it's the people pleaser in me, i guess.)

the cocoon-aged concierge led us to the elevator, and got us to the second floor. as we were going out, a doctor in a turban was going in. our older gentleman remarked that he hadn't seen the man before...."he must be from a different country." my son and i respectfully nodded, trying not to smirk.

we went to the "special procedures" waiting room, where a paula deen looking receptionist handed me a questionnaire to fill out. the basic "what diseases have you had.... what drugs are you taking...." plus "how do you learn? audio? watching a video? reading?" and a "what keeps you from learning?" section.... language barrier... poor sight.... i'm thinking the last part has to do with how the doctors will explain your operation.

after this, i was led into the operation waiting area....there were curtained areas where different bed were. we were sandwiched between a man in a wheelchair (who moaned in constant pain) and a woman in a reclining wheelchair (who had a friend who constantly was throwing out trash from the different bags hanging off the back of the chair.)

i made the cardinal sin of looking afraid as i was led in. that immediately made me the male nurse's special patient... one he had to win over. i let him overexplain everything....(this actually was a good thing because i couldn't find *anything* about the procedure online.)

i got a blood pressure cuff put on me, and an oxygen sensor clothes-pinnned to my right finger. he also put sensors on my back... my son and i watched the numbers go up and down.... ("breathe real fast! see what'll happen!")... my son said that my blood pressure was better than his was. (i always have good blood pressure. i don't know why...i eat like a southern man who's been starved for four days.)

the procedure went pretty well. no pain, no pressure. i got a shot that didn't knock me out, but kept me from caring about anything. (the nurse said "you're going to have something in common with forrest gump... you're going to get a shot in the 'butt-ox'." i mentioned that like gump, i loved dr pepper. at the end of the ordeal, he gave me two of them.... plus a little boxed lunch. nice.)

while they were tucking the port into my chest, they played my favourite radio station, and talked about hootie and the blowfish. (they were slightly weirded out that he was a country star.) i tried my best to join the conversation, but i started to feel more and more depressed. perhaps it was the fact i was tired going into the surgery (i worried a lot the night before).

the nurse said it will be good to get home, and rest. then he said, "you know what will be a better feeling? it'll be when i see you next.... when you can get this port taken out."

everyone there was full of hope. full of good words for my oncologist. trying to bolster my spirits, which are, unfortunately, fading fast.

you see, when i'm at work there are many people there...encouraging me, and making me feel included in things. i'm about to leave that sense of to-getherness.... and basically be on my own. oh, people say "let me know what i can do to help" but it's hard to articulate what i really want. constant support. caring. love. attention.

i'm about to go under the wire.... and no one will see me disappear.

port insertion

this morning, i got a port placed on the right side of my chest. i'm not sure if they put it in the jugular, or not.

i'm not very sure of anything right now.

my oldest son took me early in the morning to the hospital. it was nice to be with him, but i'm also kind of sad when i'm with him. i sometimes feel that i was way too strict with him when he was young... i was young (20) and i had no idea what i was doing. i did a lot of reading, and tried to give him good studying habits..... but i also tried very hard to make sure he behaved. at one point in our conversation to-day, i said i was a bad mother. he said ....."well, i don't feel that way." the was he spoke it, plainly and softly, really got to me. how can anyone really like me like he does? there was a point to-day where i said "what a great ice pack! it doesn't leak, or anything. very well made." and he said, again in an offhand manner, "well you deserve it. you're my mother."

i have no idea why i'm crying now, or why it all affects me. maybe because he still loves me, even though i made mistakes. maybe because the only one i can tell is a flashing cursor. maybe because i wish my entire world was different....

i think i need to let this lesson i just wrote down sink in, so i can learn from it. i'll try to tell the story of the port placement later on....

penultimate day

i'm at work, trying to find something to busy my mind with. the delivery was light, so i got it done pretty fast. i'm not needed up front. it's not busy, and people i identify with don't work until the night.

all i can think about is the port placement surgery to-morrow, and all these 'what if's"......

what if the chemo doesn't work? (then they do radiation.)
what if the radiation doesn't work? (don't be silly. one of the two will work.)
what if i worry so much, nothing works? (you think you're stronger than prednisone? wow, lynn, you must be a goddess! )
what if i don't have anything else to talk about with a close friend, and lose friendship, and closeness? (do you really think the friendship is that shallow?)

unfortunately, the questions are louder than the italicized answers.

i should be over this now. i should be preparing for a fight, rather than wallowing. for fuck's sake, i still cry over the death of my father, and that was ages ago.

i'm so glad he's not here to see what a mess i am

it'll be nice to talk to my son, who's driving me to-morrow. he's so much a stranger as a man.... heck, he was a mystery as a kid, too. he'd say these smart things, and surprise me.... someone with so much sense? how could he be related to me?

i'm sure all i need is more sleep, if only i wasn't chasing slumber all the time....

a tattling of days

some of the things that went on the past few days:

chemo class.

the nurse in charge of the class gave us a book, and proceeded to go through the book with us. there were a few questions that came up that i'll ask my oncologist (do i have anemia? what is the purpose of chemo? to cure? to maintain? or to prepare for another procedure down the line?) also, the nurse said that we shouldn't take antioxidants, because they don't know what is a bad cell, and will help good cells as well as cancer cells. no worries. i'll just have an arsenal of vitamins to take, once i get the all clear to do so.

the nurse also said that r-chop should only thin my hair, because there is only one drug in my form of chemotherapy that causes baldness. (it takes two to make me snatch bald headed.) i don't quite believe her, because there are a huge amount of people online who have lost their hair. it's actually a dangerous thing to say to some people.... but i've learned to filter out the absolutes.

i asked about ports, and the nurse implied that i should have already had an appointment made. i must have seemed worried, because afterward, a nice lady came over, and showed me hers. i was like "how cool!" and we giggled at my enthusiasm. proof positive that i would do good in a cancer support group. perhaps i'm ready now to find one? i'm still on the fence....

hair cut.

to-day, my daughter and i went to get our hair cut. i was going to get it short, like hers.... (she had even found one that was short, but had longer sideburns, to help with the shock of losing so much hair... she really had it all thought out, which i was grateful for. she's so smart...) ....but i decided to go with a shoulder-length style at first.... not too drastic... especially since i have one week of work left....

i told the hairstylist that i was going to have chemo, hoping for some insight.... but she was more interested in my story. blunt questions followed. i answered as best as i could... no voice trailing off, strong thoughts. i teared up a bit, but she didn't notice. it was like the worst job interview ever. i should have expected it, of course, and i will learn from this. it's part of the "haircutting experience." hairstylists think they need to work on the inside of your head, as well as the outside.

when i do go bald, i probably will do like this one lady i saw on youtube .... she brushed and brushed and brushed out her hair, watching it fall out in clump after clump....then, when there was nothing left but sparse tendrils, she got the clippers and mowed it down.

right now, it's in layers that bounce, and curve around my face wildly.... cupping my face, and hiding the fat and dry skin. im going to miss the caress of my hair... but it will be back. (hopefully.)

the port.

the chemo class nurse told me to call my nurse, even though she thought she was on top of things. she wasn't. i was quite glad i called. if i don't have the port placed in my chest, then it's going to be very hard for the technicians to access a vein so they can give me the chemo. so, now i'll call the hospital to-morrow morning, and make an appointment. then, i'll take paperwork to my insurance lady at work, in hopes of getting a check soon.

lots of grown up stuff ahead

losing control.

because i will be unconscious for the port placement, i need a ride to the hospital. not a big deal, but one of many times that i'm going to have to be realistic, and allow help. enigma wanted to clean my bedroom so it will be ready for my isolation. he doesn't mean to, but he has a way of... moving things. and, even though he doesn't throw away things that are important, i still feel disoriented when i go in, and everything's changed. the solution to this is to be part of the cleaning process, but the dust overwhelms me, no matter how much allergy medicine i take. and, to tell it true, the clutter overwhelms me, too.

some people in my life tend to take control, and run further with it than is healthy for me. i'm the only one who can stop them. i just need to learn to speak.

so... something that is unhealthy inside of me is strengthening me to make life healthy on the outside of me. funny how things work out that way....

meds

these are all the meds i have so far, to help me fight my sickness.

my diffuse large b-cell lymphoma.

my dlbcl.

yeah, the sickness...anyway....

there are six kinds of pills. one is prednisone, that will be part of the chemo. one is ativan, that helps with anxiety. two are for nausea, either in the daytime, or in the night. one is to help my kidneys keep from getting the gout (because of all the dead cells they have to process quickly). and one is a "just in case" antibiotic, in case i develop fever.

it looks like a scary bundle, but i'm already used to taking vitamins, so for me it's just something i have to get used to. still, i'm trying to remember the little things... the little changes in my life. and these aren't sugar tablets. they are powerful drugs to help get rid of the powerful badness inside of me.

an arsenal of goodness that i need to get to know.....

i need all the help i can get....

tips and tricks

i asked the people from the lymphoma facebook group what they wish they were told about chemo. i got a lot of responses, and much encouragement. i don't want to write down specific stories (i value their privacy) but here is some advice they gave me:

stay on top of your nausea. take all the pre-meds they give you. (concentrate on taking them around the clock for those first five chemo days.) ginger tea helps with nausea, as well as miso soup. weak green tea, and room temperature gatorade are also good choices.

drink drink drink. stay hydrated, because that's what washes away the poisons that you're voluntarily giving your body.

the fatigue you will feel will be unlike any that you'll ever feel. you will feel like the walking dead. obey your sleep, and rest all you need.

you will lose your hair. (someone said the first week, another said after the second chemo.) i know this is a basic fact, but there are people out there that say "no way! not me!" it's best to face facts. there are free wigs you can get from the american cancer society. there is also a head covering called a buff that's awesome looking. ( https://www.youtube.com/watch?v=sSvRm4CHmvE ) use baby shampoo on your head, and body. also, you'll need sunscreen for your head.

limit your contact to people, and nurse your immune system, because it's gone.

stay on top of your constipation. it can get pretty bad pretty quickly. up your fiber, drink water, and use stool softeners. eating small meals helps, too....whatever you can tolerate.

mouth sores are a big problem. biotene mouthwash helps with this. they should have you eat a popsicle, or munch on ice when you get the "red devil" medicine to help prevent mouth sores. also the vitamin selenium (100-200mg a day.)

don't put too much pressure on yourself. it's harmful, especially with your brain. chemo brain.

the shot they give you after chemo to build up your white blood cells can hurt your larger bones. (either the drug neupogen or nulasta) tylenol will help with this. claritin helps a lot with this, too.

claritin or allegra helps with the flu-like symptoms you will have. also, epsom salt baths will relax you.

making a spreadsheet of the medicines you have will help you know when you took what. this also helps the caregivers help you.

during chemo, bring a book to read. laptop. your own music to listen to. hard lemon candy or peppermint gum to enjoy. a cozy blanket that's personal to you.

there were some things said over and over again... tell the doctor when you think something's wrong. rest when you need to... drink lots and lots.... and mostly.... you will survive this. there is hope.

i want to get as much ready as possible...because i know at a certain point i won't be myself anymore... and i won't remember anything. it was great to get all this inside information.... it eases the worries i have in my mind.

well....almost, anyway...

brighter roads?

little glimpses from the past two days:

it's weird to be happy about cancer, but this form of it is better than mantle cell. it's the more popular version of lymphoma.... a road more well paved than the other one, which had potholes, and shady corners, and hobgoblins. i find myself telling people i have cancer with a sort of giddiness that they don't understand. (after all, they are still in the shocked stage.)

and i have been having to tell more and more people...

i gave my boss my two week's notice. (i'm coming back, but i was hoping to give him some time to get things to-gether.) we went inside my main boss' office to talk, as we did almost three years ago when i interviewed for the job. i was even wearing the same blouse (by choice.) we talked about what i needed to do. he's so young... he thinks after four months i'll be back. that's just when the chemo stops. who knows what happens after that.... and how much time i need to strengthen myself.

still, he's very optimistic, and wants me back as soon as possible.

a couple of ladies already knew i had cancer. they asked the good juicy questions. will i lose my breasts? no. will i come back? yes. you've got this... you'll come back. you need your rest. your hair will come back thinner.

one co-worker, with soulful eyes and an accent that spoke of a thousand lands away, was very sympathetic. she got that i was being brave, but her eyes showed sadness. she told me very strongly that i would be missed. she made me sad, and happy, and more resolved to come back. amazing.

one strong co-worker, who's in a perpetual state of self discovery, slightly chided me for not telling of my struggle before. she told me to call her for anything... to take the boys out... to get groceries... to cook... anything. her words left me stronger, and more optimistic on things. she had been through a hell herself, and was so much the better for the survival.

i was antsy at work all day yesterday. i had stayed up too long the night before, trying so hard to keep the day from coming. i was still processing all the news. i was writing emails to all my committees, trying to bow out gracefully from the best job i've ever had. i was very much strung out... but i was nicer to people to-day. i had fun. it's going to be a great two weeks at work... and i'm going to try to store up enough memories of it to keep until i come back.

i tried to go to a wig place to-day, but it was closed for remodeling. i'm not sure where another one is in tulsa. i'm wondering if i should just wait until i'm bald, and go to the cancer society. i'll have to research this. (i sort of want to buy one of the crazy cheap wigs i see on amazon... i may still do so.)

i still haven't read up on the cancer i have. i read so much about mantle cell, that i'm weary to start all over again. i know i need to, though.

please don't take away this cancer away from me, too

i bought $100 dollars of drugs just recently. (luckily, my last good paycheck came in from the library.) there are two kinds of nausea medicine, prednisone, a kidney medicine that will help me process the overwhelming amount of dead cells that will go through my body, ativan for the anxiety, and an antibiotic just to have on hand in case of fever. oh, and also a cream to numb up my skin around the port i will get... so they can put needles full of drugs in me more easily.

i'm sorta glad i read that gilda radner book... so long ago.

i'm getting a lot of tips from the facebook group i'm in. biotene mouthwash for mouth sores. get lots of rest. drink lots of water. have your own cuddle blanket. scarves and wigs are awesome! stool softeners. eat little meals before chemo. take claritin for the flu symptoms you'll have. stay on top of your nausea meds. relax.... all of these things are temporary.

so much to learn in this cancer college.... i hope i get my degree soon....

off the mantlepiece

i guess i'm glad i didn't call this blog "climbing off the mantlepiece" or something like that.... (and believe me, i'd be that corny about it.)

i had been waiting for the february 28 exam for a-while. whenever i took the various tests i was being sent to, the technicians would all try to reassure me. "you'll get the results in a couple of days. you'll get the results soon. i'll put this through as soon as possible...." then i would reassure them, and say "it's ok. i have to wait until february 28, anyway."

i would fantasize about the different outcomes. "mantle cell, stage 4." (that was ok. mantle cell stage 3 or 4 was to be expected, because it's a sneaky cancer.) "mantle cell, stage 2. let's watch it, and wait." (highly unlikely. my right arm is perpetually tingling because the tumour prevents me from putting it straight down. yeah. like Christmas story. "i can't put my arms down!") "it's not cancer. it's a big ass zit under your arm. want to help pop it?" (and i would be just twisted enough to say 'yes!!")

i didn't predict what really happened.

my doctor came in. she said she had good news. before we had a chance to react, she said it wasn't mantle cell lymphoma. it's diffuse large b-cell lymphoma, and i'm in stage 2.

she continued to talk about how they determined it wasn't mantle cell. there is a genetic marker that goes with this type of cancer. it was missing from my cancer.

enigma was happy. trying to respectfully listen to her. made sure to say that he knew an oncologist, and how he had said to make damn sure that this was mantle cell, and that the tumour was blastic before continuing. so, he was glad it wasn't severe.

i was in shock, and let her words wash through me.

she started going into what treatment she had chosen. since i was in stage 2, with a larger tumour, i was a candidate for 6 cycles of a chemotherapy called r-chop .... then radiation if there was still some of the tumour left. four months. five drugs. no hair. no tumour. easy on paper. hard as hell to live through.

while enigma and the doctor camped out on what the pills were going to do to me, and how they would affect the cancer, i was asking the results of the different tests.

when i had the pet scan, the tumour could be seen, big time. but, there were two other lymph nodes below the waist that were prominent. one of them could have been an ovarian cyst. the other, scar tissue from my c-sections, or the tubal ligation.

the echo turned out to be great. i have an excellent normal heart. 60-65%. i didn't get what 65% was, but if it were 50% or less, i wouldn't be able to have chemo. so, i'm doing great for a girl who came from two parents who died of heart issues.

it goes without saying that there wasn't any cancer in my bone marrow. stage two in lymphomaland means that cancer was found in two or more lymph node groups either above or below the diaphragm. the only reason i wasn't stage one, i was told, was because my tumour was 10.2 cm large.

i would have been stage one if.... things were different. (let it go. let it go. don't be so angry over a doctor's mistake. there's virtually no difference between the treatments of stage one and stage two lymphoma. yes, you would be in less pain. yes, you would be less worried. but you would not have been able to go to baltimore three times, Christmas would have sucked big time, and ....things happen for a reason. chill.)

r-chop, by the way, is a chemo treatment involving five heavy duty drugs: rituxon, cytoxan, hydroxydaunomycin, oncovoin, and my friend prednisone. i'm to take the first four drugs once every 21 days, and prednisone for five days every 21 days.

"my...friend, prednisone?" yes. you see, when my eczema flares up, they give me prednisone to calm my skin down. it's so strong that you're supposed to taper off it gradually, like an addict sneaking away from a drug dealer in the night. this time, prednisone is helping me fight things inside of me... and is needed so much that i won't need to taper off.

i asked my stupid questions. (questions i knew either my co-workers would ask, or that i needed to hear the answers to, for my own sanity.)

is cancer contagious? no.

is it job related? no.

is it genetic? no.

may i give two weeks notice? yes. (my oncologist has been superior on this. yes, take that week's vacation. yes, do those last two weeks work. i'll set up things for you for when you come back. yes.) she did make sure i wasn't suffering before she said yes. i am a bit more tired now. i sleep more soundly now. and...it feels like my shoulder blade is popping out of my back to make room for my tumour. but, by and large, if i get enough sleep i'm fine. mostly.

at one point she said there was a 50% cure rate for this cancer. w...wh..what did that mean? well, that meant that 50% of the people who went through the chemo were cured of cancer. if they weren't cured then, then they went through radiation, and then they were cured. ah. i see. fair enough.

i still was in this fog, listening, writing down meaningless points, trying to keep in the conversation, but i still was having a hard time. you have to understand... first i was told it was nothing. then i was told it was nothing, but let's make sure. then i was told it was something, and something fucking harder than shit. now i'm told it's something, but it's something manageable. still hell, but a hell i can go through.

i asked my oncologist what i should do in the two weeks before the chemo, to prepare for chemo. (the nurse had said eat as good as you can, sleep well, and do the things you really need to do before you start.)

she told me .... to surround myself with love. positive people. warm feelings. hope. the good things in life.

some people work in the business of making your outside world perfect. my doctor knows.... that it's all inside first.

i wish i could follow her advice. to. the. letter.