"you have cancer" .... now what?

[Jo]

i posted my first days and weeks of my cancer diagnosis at adbb but with permission, i'll copy and paste the relative data to this journal. i will post updates as oncologist and radiologist appointments take place.

first, a little bit of history.
i went for a scheduled gyn. exam on April 7, 2008. i had not had an exam in about 5 years. no insurance was the biggest reason. there was just no money. i had some problems but attributed those to aging and pre menopause. on the morning of April 9, my ob/gyn office called and asked how soon i could come to the office for a consult. i knew that the news was not good. no doctor ever calls you in 2 days after an exam asking how fast you can get there just to give you good news. no.... i knew something was wrong.
my ob/gyn sat me down and very calmly said "you have some cancer cells." she told me she would refer me to dr. reid and told me not to worry. cancer cells...... now to me, that meant i had a few abnormal, cancerous cells and the doctor would scrape, burn, anything to remove them and i'd be on my way.
after i got the news of 'cancer cells' i did break down before i drove home. i called my husband and told him what the dr. had said and he was calm, saying we'd get things taken care of. he had no clue, nor did i, what i was in for.
my appointment to see my gynocology oncologist was set for April 24. dh went with me but sat in the waiting room while i had my consult. i went in expecting to hear "no problems. we'll do a slight procedure and that will be it'. that was not the case. dr. reid started out thanking me for coming to his office and letting him take care of my needs. then those words came "you have cervical cancer and we'll need to set up a time when we can operate." i lost it. i went from a few 'cancer cells' to 'you have cervical cancer' and it shook me to the core. i asked at that very moment for the assistant to please go get my husband, which she did.
the rest of our initial appointment was talking about my options. my cancer was stage 1B, an early stage, and quite treatable although the treatment would mean a radical hysterectomy and perhaps radiation.
my mind was reeling!!!!! not 2 weeks earlier i thought i was healthy. i lost weight, i was exercising, i don't smoke or drink, i was an apparent picture of health. and now i was a cancer patient, facing surgery with the possiblity of radiation.
surgery was scheduled the same day before i left his office and set for May 7, exactly 1 month from my exam.

there was alot of appointments between that day and the surgery. i had xrays, including a CT scan and a PET scan. i had to pre register so bp, weight, ekg and blood work had to be done.

[Jo]

continuing my story...............

on april 26, i announced to my friends at adbb, those who would care to know, that i had cervical cancer.

i have cervical cancer.
there. i said it. now you know.

i'll be out of pocket on and off for the next 1 1/2 weeks and then
the major part of may.
exercise will be non exsistant via dr.s orders.
vitamins and supplements plus herbal supplements are gone until after may 7.

i have cervical cancer. words i thought i would never say. not me. i've done well with my woe, water, exercise. i've helped my body to be better and i'm in pretty good shape for a 54 yr old. my body has betrayed me.

i have cervical cancer.

i felt alone, helpless and feared what the future would hold for me. i was here in this place, with no friends and family that nothing but strangers to me. telling my mom was the worst. she has had battles of her own.... losing her mate and 2 children, watching all her siblings die, her own illnesses and aging issues.... but i don't know if anything could have prepared her for what i had to say.

on another day, i posted...............

cancer..... i have cancer. no one in my immediate family has ever had cancer. not even the smokers! how unfair is that??? my gosh it still seems like this should not be happening to me. it sure wasn't picky about who it chose.
my older sister said to me 'of all the siblings, you are the healthiest. you eat right, exercise, don't smoke or drink, take the supplements you're suppose to take and here you are.... the sickest of all'. this is all true but here is the truth of the matter..... this cancer is not hereditary. there is no rhyme or reason to how i got to be the 'one'. none of the factors, the weight loss, the exercise, the supplements, made any difference to what body this would settle in.

hard days for me.... questioning days for me.

[Jo]

just a couple days prior to my surgery.................

i have cervical cancer. i can own it as it is mine to deal with.

my 10 [or however many it takes] feelings of grief. these are mine. i suppose some or all will be what others have felt if they have gone before me down this road.
but these are mine.

DISBELIEF
how could this happen to me? why did it happen to me?

CONFUSION
what should i do now? how is this going to affect me?

ANGER
i'm hearing things already, others saying "this is what happened to me. you'll go through the same thing". sorry and lucky for them, the ones telling me this have never had cancer. so "NO", they did not have the same thing, i will not go through the same thing.

STRESS
a constant in my life right now. some well meaning family members are adding to this. they are not knowing what else to do but still, they are adding to the stress. others, who feel they are doing something good for me are actually adding to the stress. this goes hand in hand with the anger.

OWNERSHIP
this happened to me, not my sister, not my mom, not my kids, not even my dear husband. this is mine. how i choose to let it affect me is totally up to me. some days i will be determined and with a single purpose of not letting this cancer be the focus of my being.

and i can say without any hesitation, that i am pissed this happened to me. not that i want ill will towards anyone, especially with this diesease but i am still pissed this happened to me.

[Jo]

dealing with the surgery itself.............

dr. scheduled 5 hours for surgery, it took 6+.
i had a radical hysterectomy and also 19 lymph nodes were removed from the pelvic area. 2 days after my surgery, dr. reid let me know that the lymph nodes were clear, no spread of the cancer to those which is a very good thing. however, the cancer did spread into what he called the lymph channels. for us untrained folks, that means the cancer was not exactly contained to the cervix but has spread just beyond the surrounding area. he said at that visit that at my check up, we would be discussing the follow up radiation treatments.
well, that hit me like a ton of bricks. i didn't want radiation. it was an option for me pre surgery and i turned that option down since surgery was going to happen anyway. things didn't work out according to my plan and radiation did happen. more on that later.

the day after surgery, the nurses, right on cue, got me out of bed and i suppose i walked maybe 35 or 40 feet, turned around and went back to bed. to my surprise, each subsequent walk was just a little further. by day three, i was walking the entire hallway unassited although there was always a nurse by my side. i know now that the exercise i had done in the years prior to this event was the very reason i was able to move much faster and better than a sedentary person whould have. trust me, i was not setting any land speed records but i was doing very well.
my next great feat was going from the wheel chair to the seat of my husbands truck. my wheel chair assistant, a kid of 16 years, i guess figured i could do it on my own because he just stood there. after fumbling around he finally figured out that i needed help but by that time, jack had pretty much got into the act and help to support my while i used the grab bar.
word to future patients.... when you go home, have a car ready not a truck. and have a soft pillow available to support and protect your tummy area angainst the seat belt. you'll thank me later.

[Jo]

at home...............
i slept downstairs, had everything within arms reach, plenty of pillows. oh i forgot... i had what is called a JP bag still 'attached' to me. i had a second one but it was removed at the hospital. simple expanation: a JP is used to drain the fluid that collects from your insides while you are healing. i also had a cathiter inserted through the skin. i would have both those drains in me for 2 weeks.

i was allowed to shower but could not let the incision [i was cut from the pelvic to just above my belly button] get saturated. if i knew then what i know now.... although i could get the water as hot as i wanted or needed, i was very very cold while trying to pat dry after the shower. jack was with me the entire time, helping to hold the bags in place, to help wash, to help dress me. feelings of helplessness were quite abundant. i don't know what women do or how they handle it when they face this alone.

i came home on a sunday and tuesday was my first day to venture upstairs. too soon for the health care nurse [who i might add, neede to lose at least 100 pounds]. she stated that she would never have started 'excercising' that soon and all i could think is she couldn't have started that soon. it was only 1 flight, i did what i intended to do and went back downstairs and rested the rest of the day with only short walks to and from the kitchen.

i am on atkins maintenance and that pretty much went out the window during this time. i didn't care in the hospital and after i got home, all i wanted was toast and chocolate milk. i've had, even to this day, eating problems. radiation might be good for killing any remaining cancer cells but it reeks havoc
on the pelvic areas and worse if you aren't careful.

my 2 week check up went smoothly, the cathiter and jp were removed and i proceeded to ride with jack to pennsylvania. he had a job to take care of and i went along for the ride. wrong move. it was too much, too soon.

the rest of the healing time from the 2 week check up to 6 weeks post surgery went fine. little by little i was moving more and better and getting antsy about sitting around so much.

[Jo]

i'll move into my radiation therapy now.........................

i had an initial visit with my radiology oncologist about 4 weeks post surgery. treatment would begin 6 weeks post surgery. the consultation/exam took about 1 1/2 hours. there were alot of questions and alot of explanations. i was not thrilled about the choice in doctors. there was, at the time, only one radiology clinic in the area. it was either go there or travel 80 miles to columbus every day. with gas prices cliimbing to over $4.00 per gallon, 160 miles per day, 5 days a week, that option was not an option.

i was scheduled for a pelvic scan, a fitting for my 'leg forms' and a fitting for my HDR treatments. i also got my tatoo's. tats are placed on the body so the radiology therapists can exactly pinpoint where the radiation will be placed at each session. they are the size of a freckle, i have three of them.

i recieved 25 external beam treatments and 6 HDR brachytheray [high dose radiation] treatments, beginning June 23 and ending on August 5. basically, the external beam was done monday thru thursday with the HDR being done once a week, on Friday. i had some scheduling problems because of July 4 and a doctors conference but that was the basic schedule. the external beam treatment lasted a whole 8 to 10 minutes, if that. once you get used to what is going on, the whole thing takes very little time. the HDR treatments were longer, lasting from about 20 to 25 minutes.

side effects.... i had diarrhea at the end of the first week. my doctor said it was something i ate, that it was too soon for me to be having diarrhea. i knew different and explained my problem to the other radiology oncologist at the facility and he set me on a better course.
fatigue was a major side effect, probably the worst. i tired easily and the level of activity was no where near pre surgery. i was amazed at zapped i was.

i was able to drive myself to my treatments which was a plus. from what i have read, there are many who can't.

i had to adjust some of my eating during this time and the weeks post radiation. fresh, raw, fiber filled veggies were a mainstay in my diet but my system couldn't tolerate them any longer. even now, as my intestines keep changing [a normal occurance in my situation] i have to watch what i eat. some of this will change over time and it's not uncommon for changes to still be going on even months after treatment.

[Jo]

i'm all ready for my check up with the gyn. oncologist. i have to be there are 9:20 AM. it takes us about 90 minutes travel time. some of the issues from the last visit seem to be working themselves out. perhaps no more surgery will be needed. yahoo!

-----------------
30 dec
my exam went great. the pap from the last check up showed no signs of cancer, everything normal. another pap was done today and i expect it to be normal, also.

no need for surgery! the scar tissue has softened enough to not be a problem. i'm to continue what i am doing so the prognosis continues to be good. i go back in 3 months and sometime after that, i'll probably be scheduled for a CT scan.

[Jo]

what a good day for me! i guess the good report from yesterday did wonders for me. my eating is on track, better than it has been in weeks, water consumption is good, exercise is okay.

i don't think the idea of having cancer ever leaves a person. it may not be at the forefront of every thought, every day but still, i'll bet there is always a little part of the brain that keeps reminding every so often that 'you have/had cancer'. i think it more when i have an appointment coming up or when i just get past one.

[Jo]

from what my doctor tells me, my bowels will continue to change because of the radiation. i do eat low carb but am on atkins maintenance. because of the way i eat, i choose the low carb or no sugar added ice cream and the sugar alcohols are causing me problems. i'll have to drop that treat and go for something else.

this is a common problem for people who have had radiation to the pelvic area. right now, it's more of an nusiance than anything. there is no pain associated with eating the sugar alcohols, just irritaiting that things aren't the same as before.

[Jo]

this is something that has bothered me in the past and seems to be rearing it's ugly head again. i know my husband is smoking again. he had quit back in 2000 but sometime in 2006 he started again. i could go through the whole story but won't. point is, i was pissed and i still am that i was the one who got cancer. i certainly don't wish this disease on him but how did i get it and not him? it is torture for me to think he is smoking while i was diagnosed, had radical surgery, 32 bouts of radiation and all the recovery that goes with it and now looking at what the future holds as far as checkups and health issues i have to watch for................. and he smokes. i am so upset over this and it seems to be worse today than it has been in awhile.

a word to those family members and friends of cancer patients who might read this...... you are doing mental harm to your loved one if you smoke. they may say it's okay but i could bet you that it does matter. they are questioning 'why me?' and they are thinking how unfair it is and i would even go so far as to say they are resenting the fact that you do things that are unhealthy while they are the ones suffering with cancer.

i eat right, i've lost about 35 pounds, i exercise, i don't smoke, i don't eat candy and cakes or pies. i got cancer. resentful? at this moment, you bet.