as the journey slowly comes to an end......

about 15 years ago i started noticing things about my mom that caused concern......concern about her memory. 3 years later my mom was diagnosed with alzheimer's disease. it took the family a long time to get her diagnosed. she fought going to the doctor and being honest about those little things: forgetting where she parked the car, putting her shoes on the wrong feet, forgetting to brush her teeth, losing her way home, not remembering conversations or just asked questions. she firmly put it all down to "getting older".

the loudest warning for me was when mom told me she'd forgotten her handbag in marshall field when she was shopping. she didn't notice until she went to get her car keys to leave......no handbag. she chuckled as she told me the story. i immediately called my brother and asked that he accompany her to a doctor's appointment. without family intervention, mom would never tell the doctor the truth....without the diagnosis she couldn't get meds that might help her keep her memory longer.

even with the diagnosis, mom, ever the fighter, refused to really acknowledge what was happening to her. and in the beginning, it was difficult to really see........unless you knew her well. she was good at hiding things, my mom. it's a trait we've all inherited from her in various degrees.

for the first few years my brother and i joked that mom was actually easier to deal with. you see, my mom could be a very difficult woman. she was often very critical of her children......often that criticism boarded on abuse. and she had a temper........legendary to us (but not by her family standards).

with the beginning of the disease, we had this lovable, easy to talk to mom. it was kinda nice. we had some great times in those early years.

but this disease is horribly cruel......the longer you live with it, the more you lose. and for those around you, it's like saying good-bye in stages over many years.

one of the most difficult things for me was seeing mom have those lucid moments where she would realize what she was losing, but didn't understand.

i used to be so smart......and now i'm just an old dumb idiot. she would cry, pounding her fist on whatever piece of furniture was handy.

it cut me to the core to watch her.

one of the things i'm gladest about is that steve got to meet my mom while she still sort of remembered things. she still knew me and understood that steve belonged with me. and he was great with her. helping her walk, hugging her, assuring her he would take good care of "her baby".

mom broke her hip almost 3 years ago. it was then she started to really go downhill. yet those lucid moments would still pop up........and mom looked so sad and frustrated when she couldn't do things.

today my brother called. mom's quit eating and drinking. she just lays in her bed and sleeps. that's mom's way of letting go. her instructions, written so long ago, preclude us from putting in a feeding tube or taking any measures to prolong her life.

honestly, there isn't much of a life left for her. there is no quality of life really. she's just a shell of what she was. who my mom was is gone. the soul of who she was has been disappearing in stages for several years.

yet here i am, mourning yet again........the loss of my mom. i've missed her so much, especially in the last few years. and i thought the tears were finally gone. but they are not. as i write, i cry......missing her, knowing that the next phone call from gary will probably be the call for me to come home for her funeral.

so the memories come flooding back........the memories of a lifetime, good and bad, happy and sad. this is a photo of mom 2 years ago this coming january. she's holding a monkey, "cornelius", that i sent her years before for valentine's day. that stuffed monkey became a link for us. she would "talk" to cornelius often. and he reminded her of me.

the soft side of my mom.

know mom, that i love you. i know gary told you that today........and i believe somewhere in your heart, you heard.

hector the bully.....................

for those of you that own pets and don't have children, those pets become our children. even if you have kids, i think one's pets certainly become an important member of the family. we love them, play with them, teach them obedience, celebrate their birthdays, give them christmas presents.......oh and show off their pictures. in comet's case.......steve couldn't wait to start a face book page for him.

we are also very protective of our four legged friends.

we've had comet for about 3 months now. in that time we've become a family of 3.......our sweet little comet, the oft spoiled child that steve and i didn't have. we love our little guy.

so, there's a dog park not far from our home. comet goes at least twice a day. it's our first morning walk and usually our after work walk as well. when there are other dogs around, comet will often play with them and run off his excess energy. (unless of course there are squirrels to be had).

there's a bully in our park......his name is hector. i'm not sure what kind of dog he is, but he's huge. hector comes up to my hip and is probably over 100 pounds. comet comes to my knees and is 40 pounds.

for whatever reason, comet and hector don't get along. there are other dogs in the park that comet is indifferent to as well. he sniffs, decides that he doesn't really like them and just ignores them. that happens to him as well.

now hector is a different story. he comes stalking into the park, does his business then starts to make the rounds to the other dogs. when he reaches comet, he always growls and goes for comet's throat. comet cowers, whimpers a little and as soon as hector's owner yells at him, comet pulls me out of the park.

it usually takes comet a couple days to regain the confidence to go back to the park and play. it makes me angry.

this last monday comet and i were in the park after work. comet was playing with a sweet sheltie mix. they were having a good time. hector entered the park and came over to comet......he went to grab comet by the throat and i yelled at him, stamping my foot.

hector left only to return a few minutes later to grab comet by the neck again. hector is off his leash as are many of the dogs in the park. his owner doesn't seem to keep an eye on him. i yelled at hector again. again, he retreated.

the third time hector returned, he grabbed comet by the neck, a boxer came to get in on the fight and grabbed comet on the other side. as they were pushing comet to the ground, growling with comet whimpering, hector's owner finally came over to get his dog.

comet made a bee-line for the park exit. i called him back to check for any injury. hector's owner also checked him out and apologized.

this isn't the first time hector has attacked comet.

oh yeah, my wife told me about this.

well, i have a real problem with hector continuing to attack my dog. it takes comet two or three days to regain enough confidence to return to the park and play.

i'm sorry.

that's not good enough. please keep an eye on him. and if it happens again, i will make a complaint about hector....to the police or whomever i need to. i'm not going to allow your unleashed dog to bully mine.

with that comet and i left that park. the sheltie mix that he'd been playing with followed and they played a little on the way home. comet was less fearful.

we've been back to the park since. as soon as hector entered the park, comet was ready to go.

bullies....seems no matter if you're a bi-ped, quadri-ped, young or old, there are always bullies that can enter your life.

i think comet has the right idea.....walk away, ignore and don't put yourself in their way or learn to stand up for yourself........but never let them get the upper hand.

"egbok"..............................

this is steve's shorthand for "every thing's gonna be okay". he's said it to me a great deal lately......waiting for the second opinion, getting upsetting news about my mom. it's not been an easy couple weeks.

as i dissolve into tears, steve's arms enfold me and he whispers "egbok" in my ear. it makes me laugh......most of the time. poor guy, if tears were a cleaning substance, i could have washed a basket of clothes in just a couple hours several times over the last weeks.

wednesday was the second opinion day. this oncologist was much better than the first. he took the time to answer all my questions from the research i'd been doing. he explained why a doctor would chose to wait to treat the low grade sil, and then..........................

we're going to do another colposcopy and an hpv test.

(oh yippee! more biopsies and more people tripping through my vagina. i sooooo love this, not!).

as steve and i wait for the doctor to come back for the tests, my tears start to fall and my feet are doing a dance all on their own. steve takes my hand, whispering "egbok". i have to smile through the tears.

so after the tests, the question and answer period, i'm waiting again......for results.

one thing i can say: i trust this doctor a whole lot more. he knows his stuff, has a sense of humor, takes the time to reassure, and talk to his patients. all things that make me feel better when facing something like cancer..........

so, if my tests come back with high risk hpv, we talk about what's next. if it comes back negative we watch, wait and hope the low grade sil clears on its own. that test should be back in 2 weeks. the next thing is a re-evaluation of my first abnormal pap, which showed glandular cells in a place where they should not be. we're back to trying to figure our a mystery.

and next month, i get a redo on my pelvic sonogram. if the cyst hasn't cleared......well, we take a closer look at that as well.

so, nothing's really resolved yet. the doctors are really testing my patience. and i still feel like i'm rotting from the inside out. i'm trying to believe "egbok" and not worry about the results of all the tests. can't really do anything about them anyway.........

and then there's mom. i really haven't introduced my mom. i'll do that in a longer post.

presently she's in end stage alzheimer's disease. she's not eating much at all. gary's having hospice come in to evaluate her. if they take over her case, it's going to be a quick slide downhill. they will take her off all her medication (except her heart meds), no feeding tube or other life sustaining measures will be taken. those are her wishes.

as gary and i talked about mom and the decisions that needed to be made, we each talked about how we felt. it's been a long road with mom's alzheimer's......15 years......of saying good-bye in stages; watching our mom lose her memory, her ability to function.....until we are left looking at a shell of what was our mom.

tears shed at every stage, wishes for a quick end as we would see the frustration in her face when she couldn't do something, watching her search for names of her children and grandchildren...........

and now, looking at a new primary cancer, i want my mom back. i need to hear her talk to me, reassure me, come out and hold my hand. sometimes a girl just needs her mom. and that's not possible.........

i wonder now when the end will come for her and hope that it is peaceful, pain free. i will miss her so much, as i've missed her over and over the last 15 years....with every step backwards. but, i will be glad for her when it's over.........and i'll be full of mixed emotions for us, her kids. and as the next weeks progress, and we wait for the inevitable, i will think......"egbok".......for mom and all of us....................................

patience: virtue or pain in the ass....discuss.........

patience is a virtue.......i heard that statement more than once from my mom growing up. "be patient, mia. christmas will be here before you know it", be patient mia, you can go outside in a few minutes", "be patient mia, you can........" and the list of what i was to be patient for went on and on.

as much as mom preached that little platitude, it never seemed to take root. i'm not a very patient woman. i'm not the greatest at delayed gratification in any arena (although i've learned that with money, it is often more prudent). i expect, when i require something be done, it gets done.....not a week from now, a month from now.....now. (when living with a procrastinator's procrastinator, that can be a little dicey....not that i don't procrastinate, i do.....but......well, that's another story).

patience to me is a pain in the ass most of the time. especially now as i wait for doctors to discuss their differing views of my situation.

when finally i spoke with my regular gynecologist, dr. b, he agreed with me that it seemd more prudent not to wait to treat my low grade sil. especially given my history. he suggested 3 different courses of action: i get a second opinion; i call dr. l; or let him call and speak with dr. l.

i wasn't overly excited about letting yet another doctor poke, prod, take a trot through my vagina, and i certainly didn't wish to try and talk with dr. l again. he doesn't seem the most receptive of docs. i opted for allowing dr. b to go head to head with dr. l. they both know my history and dr. b agrees with me........that there doesn't seem to be a prudent reason to wait given my past cancer history.

i'll speak with dr. l and get back to you by the end of the week mia. try to not worry too much.

that was monday. it's sunday and no word............................

my guess.......dr. l didn't return dr. b's phone call.

with my frustration mounting, i called and talked to my brother (who's wife is a nurse). gary echoed my belief as did jeanette. "is the doc. crazy?" i mean really.......why what for the cells to become invasive before you decide to treat the cancer?

so here i sit tonight, contemplating yet another doctor appointment. patience is not a virtue when it comes to cancer. waiting for every one to finally talk, come to some agreement........the longer they take, the more chance there is that things grow worse.

patience........i suppose that in some areas of life it is a good thing. but from where i sit, not so much. time to take matters into my own hands, get a second opinion and get a doctor to explain to me exactly why he would chose to wait to treat my cancer.

and this time........i don't leave the office without an answer.

sex and the city..........

knowing that steve had to work all day saturday (navy football, then a caps game) meant that i would be alone with my thoughts. i decided to order two movies that i wanted. one was "sex and the city".

after a good cry and a little nap, i popped in the dvd and watched it (despite it being a bad copy....sending that one back for an exchange!).

as i watched my favorite 4 new york women evolve through the story, i thought of me, my new-ish companion "cancer", comet and steve.

comet was curled up beside me on the sofa, sleeping with his head on my legs as i watched. my tears ebbed and flowed. but as i watched carrie and big struggle and finally get married, knowing their life would be enriched by each other, i thought of steve.

steve; my big kid, my big bear, my love, my friend; he's my mr. big. the man i know i'm supposed to be with. the man that can help me through this hurdle i face......we face. the man that makes me laugh through my tears!

i guess that's the answer to my questions about what reward would be coming from this particular journey........the realization that steve is my rock. he holds me when i cry, listens when i'm angry, and always reminds me that together we'll get through this little bump.....whatever comes.

and with my big bear comes my little bear.......comet. always ready with a big lick and comfort. he's become steve's stand-in when he's working.

even in the midst of wondering what's coming next with the cancer, there is one thing i know for sure. steve will be there, hugging me, holding my hand and making me laugh. that makes me one lucky woman...................

the journey is the reward?

that little saying is etched into a ring i have. a ring that i purchased on the heels of my initial cancer diagnosis 5 years ago. it reminded me to think of the blessings in my life despite the cancer diagnosis and following treatment.

a couple days ago, steve played me a little recording he did.......his life in a minute. he spoke about the car accident that changed his life several years ago and how that accident makes him appreciate every day.

today, i'm looking for the same positive images to get me through the next few months of waiting......

and my emotions swirl around like the tasmanian devil whirls into a room......crying and scared, crying and angry, worried, annoyed......then they whirl around again. i can't believe i'm here again! looking at cancer as part of my life........

it's the same cancer that caused me to undergo a hysterectomy. i thought i was safe. my oncologist in nyc said that after 18 months of clean pap tests i would be released from his care. cervical cancer, if it was going to come back or metastasize it would do so in that time.

two years came, i was still cancer free and my oncologist signed off on my case. i went back to a regular gynecologist. things were fine. my cancer was, in my mind, lucky. i learned a great deal and lived to tell about it without having to go through chemo or radiation.

two months ago, i went in for a regular gynecological exam. i didn't think twice about it. until the call.......and the abnormal pap smear. two months of waiting to see the oncologist and a month of waiting for the test results. (could these people work any slower?)

his physician's assistant reads me the results.......

mia, you have low grade sil showing on the tests. the cyst on your ovary does look benign.

so, what you're saying is that the cancer is back.

all i'm saying is that the test results show low grade sil. dr. lin wants to see you back in 4 months to repeat the tests.

i was so upset. i could feel the tears welling up. it never occurred to me to ask any questions......like why a 4 month wait, why not treat now? i just hung up and stared at the phone.

the rest of that day is pretty much a blur. i called steve and my brother gary. and cried......i couldn't stop the tears. i tried to work but kept making errors that i had to go back and redo. not very productive. i left for home at 3:30.

steve picked me up and brought me home......to safety. i feel safe and warm at home. it is my haven. so, tucked safely into my blanket on the sofa, comet at my feet and steve working at his computer, i fell asleep. blissful, unknowing sleep.

later that evening, after steve left for work, i got out my cancer therapy book. written by a plethora of doctors in the field, it's chock full of everything you want to know about cancer.......treatment, survival rates, etc.

i read........and got scared. the treatment for this isn't pretty. more of my woman-ness chopped away, radiation, chemo..........

and all i could wonder was why was the doctor putting it off. i sent an email to my regular gynecologist. he wanted to be kept informed. i knew he would have some answers for me.

by friday when i hadn't hear anything, i called his office. he was gone for the weekend. argh! i needed some answers!

and here it is, saturday.........and still no answers.

right now, i don't feel like this particular journey is very rewarding. i feel violated, poked, prodded, scared, alone......the list is long. i do not feel anything close to rewarding. i know that will come. there will be a lesson learned, strength gained.

but right now.........i wish it would all go away like a bad dream..................

cancer......redux?

so, here it is.........test results..........low grade sil. for those not well versed in the language of cancer, it's low grade cancer cells on the surface. that's all i know. that and i have to see the oncologist again in 4 months to see if the cells are growing or not. then?????

i hate being in the dark, not knowing. i think i'd rather have them treat me now instead of waiting to see if it gets worse.

i'm exhausted......

memories of the past, part two.............

as i went through another biopsy this past week, my mind, my body continues to relive the events of 5 years past. so, here's the end of my last post that last time around. revisiting that time, knowing i got through it seems to help me now. as i go through the tests, the not knowing what's around the corner, i can look back and remember that things turned out alright. it gives me hope now.............................


thanksgiving was the weekend prior to my surgery. by that time, i was frightened beyond belief. i’d never had a major illness or required surgery. this was huge, they were going to remove a part of me that made me a woman. besides the fear of cancer, that fact made me sad. so i chose to spend thanksgiving alone. it was easier than crying in front of a group of people.

saturday, my cousin toni came up from atlanta. when she found out about my surgery, she insisted upon coming up to stay with me in the hospital….she wanted to make sure i would be taken care of well. when her dad (my mom’s favorite brother) died, i went to the funeral down in mobile, alabama. toni was so thankful for my presence, she felt like staying with me was a way to say thanks in a meaningful way. she was a great help and distraction when i needed it.

the night she arrived, toni and i met randi for dinner. we had some things to go over…..because my family and many friends were so scattered around the country (and they all wanted calls post surgery to know i was okay), i made phone lists for both toni and randi. they also witnessed my health care power of attorney, just in case…….it was an odd scene. toni and i shared some funny family stories with randi which had us all laughing so hard, the alcohol was flowing freely, yet there was that serious stuff we needed to deal with. dinner was definitely a mixed bag.

sunday was a “lovely” day. there were 3 bottles of stuff to drink to clear out my colon. kept me in the bathroom most of the day. we also were moving from my apartment on the upper west side to an hotel close to the hospital so toni wouldn’t have so far to travel between the hospital and her bed. it was dicey moving from my apartment and being so far from a bathroom, but we made it……that night, toni decided that a diversion was needed, so we rented and watched “finding nemo”. kept me entertained for a couple hours, along with phone calls from friends with good wishes…….the one thing i can say about that night….toni put in a herculean effort to keep my mind off the next day’s events. she kept the tears at bay most of the night.

monday morning, up early, my last shower for several days and off to the hospital. sleep wasn’t very plentiful the previous night, so i was tired….and no coffee allowed! we arrived at the hospital at 7 am and went through the whole check in process. it seemed surreal to me……like we couldn’t possibly be going through this for me……it had to be somebody else.

the reality sunk in when i had to change into those lovely hospital gowns, hat and slippers and the anesthesiologist entered the room…………by the time he appeared, the tears had been coming off and on. toni was trying so hard to keep them at bay….she had me both laughing and crying.

so, all of a sudden my private waiting room was full of people. dr. curtin telling me we’d be starting soon, and going over some questions, the surgical nurse checking on things, and the anesthesiologist hooking up my iv, starting my drugs. i remember them wheeling me out of the room….it was a little after 11 am.

the next thing i remember is waking up in recovery and it’s now about 4 pm. toni was standing next to my bed and i remember begging her to shoot me, the pain was unbearable. the surgery took two and a half hours. i’d been out for a long time. i rather wish i still was…..my mouth was dry, lips cracked and my abdomen hurt like nothing i’d ever felt before.

a friend of mine had managed to get into the recovery room to see me as i was waking up….she was full of questions and trying to hand me a bunch of magazines. toni was furious and ushered her out.

val, i know you’re worried about mia. she’s fine, but she’s just coming out of the anesthesia. she needs to rest so please let her be.

thank god for toni….i was in no mood for light conversation. in fact, i could barely muster the energy to focus on much at all.

dr. curtin stopped by to fill me in on the surgery and his view of things. then they moved me to my room…..i vaguely remember that trip, being wheeled through the corridors…..

I don’t remember the conversation with the doctor at the time, but he came back later that night and went through the whole thing again.

he explained that, while they did a radical hysterectomy, he did leave my ovaries as they were healthy. they removed a great deal of lymph nodes laterally, but he was sure they’d gotten all the cancer. he was not going to recommend chemo or radiation unless the pathologist found the cancer to be more invasive then dr. curtin thought from looking around.

i cried as he relayed his assessment. the relief i felt knowing that i’d been lucky enough to escape without needing further treatment felt like euphoria (although that could have also been the morphine drip).

the next 3 days were sort of a blur. there are certain things that stick out…..the damn breathing apparatus they made me use every hour to keep my lungs from getting all yucky from the anesthesia annoyed me (actually toni sticking it in my face every hour annoyed me). my first walk on tuesday, after they made me sit up and get a sponge bath….the pain was excruciating and i had my lovely catheter to drag along (due to the extensive cutting around the urethra, the catheter was to be part of me until thursday morning, when they would remove it and see if i could actually urinate without it. if not, they’d leave it in for another 10 days. i was determined not to go home with the catheter, so i made sure i peed on Thursday), the first time I passed gas (another sign that my body was flushing out the anesthesia) and the first bowel movement…..both eliciting cheers from my friends. strange what gets applause when one has had surgery!

toni was there daily to make sure any visitors didn’t overstay their welcome. she was amazingly stern with my friends……

okay you guys, mia needs her rest. time to go.

frankly, i was glad for her intervention. it amazed me how tired i actually was from the whole ordeal. visits, while lovely, were taxing…..forced me to stay awake when what i wanted to do was sleep.

thursday arrived….i was to go home that day. toni was leaving and blair flew in from illinois to spend the next 5 days taking care of me, since I couldn’t lift anything, i was on heavy duty painkillers and could barely walk half a block.

a kink in the plan: i woke up with a fever of 102. dr. curtin stopped by and sent me down for an x-ray and some other test to see if my lungs had developed an infection. he also informed me they’d be keeping me one more day. blair was really happy about that. i offered her the keys to my apartment, but she didn’t want to go that far alone. she still was not used to the city, my poor country mouse friend…….she spent the night in the waiting room just outside the wing i was in. that’s a great friend!

the rest of my physical recovery from this surgery was a long process that frustrated me to no end. what was worse though, were the feelings i had regarding me, my body and my sexuality.

i mourned the loss of my uterus….to me it signified the loss of my womanhood. again, not the most logical of thoughts, but who’s logical after major surgery? it really felt that no man would ever find me desirable again. i spent the next year celibate. i was seeing my oncologist way too frequently for check-ups........the continued poking and prodding, pap tests were enough to turn me off. the thought of sex actually made me think "yuck" in a big way........

it took a long time to get over those feelings......and here i am again. feeling almost violated every time the nurse says "put on a gown, remove your clothes from the waist down and the doctor will be in shortly". i feel unattractive, unlovable, and almost sick at the thought of any more invasions of my body. and i wonder when it's all going to come to an end, again.........

memories of the past..........

my health, as you know, has seemingly taken over my life lately. and with the onslaught of doctor visits, too much poking and prodding, i've been literally reliving my initial cancer diagnosis of 5 years ago. i wrote about it 2 years after my initial diagnosis and treatment. i wanted to share those memories here again. the past couple weeks have felt like i've been reliving this all over again.......

five years ago this past september i walked into my gynecologist’s office for a routine exam and to talk about my spotty, too frequent periods which i thought might be the beginning of perimenopause (by this time i’d been in the city 9 years without insurance. now i had it, so figured a check up would be a wise thing). exam and pap test done, the doctor prescribed a low dose birth control pill to deal with the spotty periods.

let’s see how this works. give me a call in a couple months to see how you’re doing.

thanks. i will.

you should get a letter in about 2 weeks telling you your pap smear is fine.

i left the office with my prescription and didn’t give the pap test another thought. well, not until 7 days later when i got a phone call at my office…..

mia, it’s dr. dabney. we need you to come in for a repeat pap test.

is there a problem?

well, there are some irregularities showing up and we need to retest to make sure every thing’s okay. not to worry you, but it looks like cancer.

what do you mean, it looks like cancer? i ask as the tears start.

it's really to early to speculate. we set a date for another appointment the following week.

oh, and we’ll probably do a little biopsy.

the rest of the conversation was practical stuff about the appointment and that i shouldn’t worry. was she kidding? don’t worry? she mentions cancer, back peddles from that, adds the little item about a biopsy and tells me not to worry. yeah, like that’s going to happen!

i call my friend, randi. she’s a freelance science writer with her ph.d. in cell biology. one of the areas she specializes in is cancer. if anyone could give me some answers or allay some of my fears, it would be her.

i’m in tears when she picks up the phone and i tell her what my doctor just relayed to me. logical mind that she is, she starts going through all the possibilities, the best case/worst case scenarios, being very matter of fact. she follows this up with her “i know you’re worried, but remember it could be just a lab mistake” speech.

randi, please…she wants to do a biopsy. that’s more than checking out the possibility of a lab error.

we chat for a few minutes, decide to meet for dinner and randi says she’ll go with me to the doctor’s appointment and the biopsy. she’ll ask questions i’ll forget and hear the doctor through more objective ears than me. on my way home from dinner, i stop at barnes and noble to pick up a variety of books on cancer, treatment, hysterectomies…….i had reading to do.

the biopsy came back showing cancer cells, so I was sent post-haste to a gynecological oncologist. randi went with me again. it required yet another vaginal exam…..that was the third in the space of four weeks. i was beginning to feel extremely invaded.

as my friend and I sat in the oncologist’s office, randi with her pad and pen, me with my kleenex, tears streaming down my face, dr. anderson tells me i need to undergo a cold cone biopsy. they need to try and assess how far the cancer has spread. she goes on to paint a lovely picture of my future….radical hysterectomy, possibly radiation, maybe chemo, sex would be difficult after either or both of those treatments.

again, she tells me not to worry. we need to do the biopsy first.


why do they tell you not to worry after laying out the worst possible scenario?

it’s now early october. my nephew and his wife are coming for their first visit to new york. i call to fill him in on what’s been going on (via family grapevine he aleady knows).

i may have to see the doc while you and devon are here.

don’t worry about it, mia. we’ll amuse ourselves if the need arises.

as it happened, the second day of their trip i had to go for my pre-op testing. eric and devon spent that time happily strolling through the natural history museum. they were so proud of themselves that day. they actually made it back to their hotel walking through central park without getting mugged or lost (their fears…silly midwesterners). the biopsy was the following monday. eric and devon were leaving the sunday prior.

the looming biopsy and possible outcomes cast a bit of a shadow over eric and devon’s trip. yet we managed to hit all the “hot” tourist spots in the city. they had a great time, while keeping me from dwelling on my upcoming biopsy.

monday arrives and i’m up early to head to st. luke’s/roosevelt in midtown. friends were coming to pick me up afterwards, but i went alone. sitting in the waiting room, i couldn’t concentrate on the book i’d brought along. i sat and cried, hoping that they’d be able to get all the cancer with the cold cone biopsy (really optimistic thought).

from the initial biopsy to the oncologist to the bigger biopsy was about 2 weeks. it never occurred to me to get a second opinion. that happened the day of the biopsy…..

I’m finally called back to the out-patient surgery pre-op. i'm sent to change and lock my clothes, go through medical history, sign consent forms as i watch others come and go. i sat for a bit, wondering what sorts of procedures others were there for, if they were as afraid as me. a brief diversion of sorts.

the anesthesiologist came to set up my iv and start the drugs to put me out. he left to get some drugs he’d forgotten and dr. anderson appeared. she tells me we should be starting soon and briefly explains the procedure to me. as she does, i start to cry. i feel so alone and frightened. the doc is leaning her elbow on the bed rail, chin in hand, looking so bored. she looked at me crying and said (i kid you not):

why are you crying, mia….i have to do all the work.

i’m scared.

you’ll be asleep and can’t control the outcome anyway.

and with that she turned on her heel and walked away. now, logically i understand her point. emotionally, i was terrified of what was happening that day, and what I would be faced with after….she didn’t do much to allay any of those fears. besides, who wants a bored looking doctor!

when the anesthesiologist returned he looked at me and asked who made me cry. i shook my head. he spent the rest of his time with me telling jokes to get me to laugh. he was definitely the high point of the morning.

two weeks later I saw dr. anderson to hear my results and her recommendations. she staged me at 1A2, with possible lymph invasion. she suggested a radical hysterectomy, including my ovaries and possible radiation. i wasn’t comfortable with her attitude, or her anger when i asked about getting a second opinion. it was at that point i decided I needed a second opinion.

i chose nyu’s cancer center and called for an appointment. they scheduled me with the department head, who also taught at nyu's medical school. I gathered my records and biopsy slides for my appointment.

a couple weeks later i’m sitting in dr. curtin’s office with my friend, tricia. The nurse comes in to inform me that the doc’s going to do a vaginal exam. all I can think is “great, another poking and prodding of my vagina”. the tears fall. i’m so tired of being poked, prodded, invaded and i’d never had so many different sets of fingers inside me in such a short time ever. this was exam number five within seven weeks.

dr. curtin comes in to find me (of course) crying. he was very gentle and explained that he really needed to assess things for himself along with looking at the biopsy slides. he wanted to see how well i was healing from the biopsy……his bedside manner was a great improvement over dr. anderson’s, he was much more intuitive and sensitive. that alone was a huge relief.

however, it’d been just two weeks since the biopsy. i was told that i could have nothing inside my vagina for 4 weeks.

crying, i looked at the doctor:

dr. curtin, i understand you’re the doc and know what you’re doing, but they told me nothing inside for 4 weeks.

i know that, mia. but i also am a doctor and know what i’m doing. i understand your fear. it’ll be fine.

how irrational was that statement to the doctor? yet, he understood my fears and dealt with them in a patient, sensitive manner.

after the exam, we sat in his office to talk. he staged me at 1B2, and was fairly certain there would be some lymph node involvement. he ordered an mri and ct scan prior to surgery.
he also said he would leave my ovaries if they were healthy. he didn’t want to push me into surgical menopause. the last thing he told me was that he was reserving judgment on radiation or chemo until after the surgery. he wanted to see first hand how invasive the cancer was.

we set a surgery date for 1 december. i had a month to try to occupy my mind and not dwell on the upcoming surgery. that was a bit difficult considering the mri, ct scan, the pre-op tests (which turned up a slight heart murmer so i had to have an ecg to check that out). at the suggestion of dr. curtin, i also went to the hospital’s blood bank and had them take 2 pints in case i needed it for surgery. all in all, a really quiet, relaxing month prior to surgery………………….

deja vu.....all over again................

five years ago this very month i was diagnosed with cancer. the whole process started in mid-september of 2003 with a simple, routine gynecological exam and ended with a hysterectomy 3 months later. (i have two posts from that time that i will post here......from another blog a lifetime ago).

the reason i bring this up is that i find myself in an eerily similar situation again. a simple, routine check up with my gynecologist last month ended with a phone call about abnormal cells showing on my pap. that led to seeing an oncologist again......this past monday. he did a colposcopy (basically an internal exam done with a high power microscope, complete with biopsy, another pap smear and ordered an utlrasound.

the ultrasound was today.......they found a cyst on my ovary. they weren't sure what kind of cyst. they'd let my oncologist speak to me about that.

now, somewhere in the logical side of my brain.......i realize that this could be a simple, benign cyst. but my body, my soul feels the trauma of 5 years ago. the numerous doctor visits, exams, second opinions, ct scans, mris.........and it all feels the same. like i'm walking down that same tunnel........toward something big and awful and scary.

this time there is a new twist however. last time, i had to rely on friends to lean on when i could. i'm not a good leaner........i tended to pull away and deal with the fear, pain and other feelings by myself. didn't want to "bother" anyone.

today, besides my friends and my dearest, sweet brother gary, i have steve. steve.....my big bear, my shoulder to lean on, tell my deepest fears to, go with me to the scary appointments bear......who holds me when i cry and makes me laugh in the midst of all the tears.

surviving the feelings and the scary moments are so much easier because of my bear. and i realize, yet again, how much i love him..........................