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My Journey Through Anal Cancer (It's been a tight squeeze but it's opening up now.) ;) lol

Ann_i_
Posts: 47
Joined: Oct 2011

I'd like to start off by introducing myself. I'm Kim (Ann, or Anni is fine as well), I'm 45, three children and a hubby(can't forget him.) My oldest son is 21, then I have a 17 year old son and then my baby girl, she's 15.

I was misdiagnosed in October of 2010, and then correctly diagnosed in January of 2011. (I have gone through this with no insurance.)

At this point in time(October 20, 2011), I have completed Chemo and Radiation, I have a colostomy (You know, i still don't know the correct terminology for this procedure or what it's considered after the fact. I buy ostomy supplies, I had a colostomy...hmmm anywho, I think you get the idea.) I have a bag attached to my upper chest, below my right breast. I have a port in my left shoulder.

I belong and help administrate on a website, and due to that and the friendship I have with the other people who help administrate the website, I have a kind of blog. (I thought about actually creating one or posting on facebook. But I didn't. Couldn't bring myself to do that. I don't mind talking about what I've been through and what I am going through, but to have it on my page for anyone to see, well, that just didn't fit me.) I bring up the website I help with because it was there (in a hidden forum that only the other administrators could see) that I kept a written record of my journey so far.

After reading a bit here, I thought maybe posting it here would be beneficial to some or maybe just help me continue to express myself. (Be forewarned, I'm a wordy person. And my sense of humor at times can be really...well...I do find humor in some of the oddest places.)
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I'm not sure of the word count allowed for posts, so the story may unwind through multiple postings in this thread.

Ann_i_
Posts: 47
Joined: Oct 2011

10/28/2010

...if you can't share with your peers, who can you share with? (And besides, it's about the only thing on my mind and maybe sharing will help take it off my mind and put it on yours!) Aren't I just the nicest person. tee hee hee Besides, there's got to be some humor in all this, right?!

I apologize in advance for any grossness factors, and if you need a code book to follow along, well, I may put one out...eventually, but don't wait for the publication date. ;)

Sooooo, stupidity, bullheadedness, doctor hating(mistrusting), that's me.

Back in June, my waste removal system started malfunctioning(that's code people.) Doing triple time. (Supposedly stress related. pfft) Anywho, I dealt with it.

Then, September rolls around, and so does massive pain. (Yeah, I know it's October, see above about stupidity and bullheadedness not to mention doc hating.)

I figured it was just well deserved sensitivity to misuse or over use of the waste removal system. Then it continued, got worse, got better, got worse, ugh.

I tried a few over the counter aids. Not pleasant, not fun, but they seemed to work....until recently.

Time for the doctor. (Long story left out about going about getting a doc with no health Insurance. But I now have one.)

So, today I go in (several hours of waiting and I finally get to see the doctor.)

He (of course it has to be a he /me sighs) asks me to have a seat. "Um, no thanks doc, think I'll stand for this." (I was darn near in tears in the waiting room.) He then asks my symptoms, I explain. He says..."Do you think it's "H's"?"

Me: "I don't know, I would have said I didn't have any before this happened, but I'm not so sure now."

Him: "Have you looked?"

OK, maybe it's me, but for a few seconds, I was stupefied. Looked? Really? Do you have any idea of the mirrors involved, not to mention the contortions needed to ..um...get a peek? I can't help thinking it's one of the last places I'd want to even bother looking. I mean, I take the garbage from the kitchen to the cans outside, but I don't look real hard at the cans. Twice a week maybe to drag them to the curb(and my son does that; when he remembers.) It's not like I regularly check them for looks and curb appeal, noting any cracks or disturbances in appearance and possibly thinking that they could maybe use a coat of paint to pretty them up, or maybe some caulk for the extra cracks that age has wrought on them. Shoot, they do their job, that's about all the time I care to place in thinking about them.

Me: "Um, no, I wouldn't know what I was looking for, but again, to my knowledge, I don't think I have any."

Him: "OK, I'll do the exam now." (Ya know, assume the position conversation here.)

He: "Well, you don't have any "H's"."

I'm thinking, really? Then why all the pain? And is this a good thing or a bad thing?

When he suddenly....OHMY....

Think Olympic High Diver, he's up there on the highest platform, he's staring down at the calm -semi, except for the spray of water to mark his entry point- blue water thinking of his dive, it's ingrained in his head, he doesn't even have to think, just let his body do what's it's practiced for. He takes a breath, one step, two, his knee pushes down and applies pressure and he lifts into the air, coming down for one quick bounce before airborne again and arcing over the water where he does his routine and heads for the pristine blue that lies below him.

Now, I can't help compare that water line to ...hm...my line of breachment. The velocity and force that the diver hits the water with, as his hands slice into the line, bisecting it, or trisecting it - I really don't have enough free brain cells to calculate the mathematical equivalence right now, but, ya know, whatever.

Well, that is the way my body feels violated, as the water does as the diver first breaks through the surface.

Him: "Oh, wait, yes you do, internal ones." (My scream preceded this statement, but not by much. A second, less loud one, followed it.) The poor nurse reached for me, though there was a screen in the way that kept her closer to my feet.

Now, that diver, he went in, and for all intents and purposes to THIS story, he lost his up and down sense and he's swirling the water in a slight panic as he tries to orient himself and find up. (This is why I hate docs, well, part of.) The diver takes 10 or 15 seconds(I believe that's about 2 and a half lifetimes.) to find up and surface, breaking that line and gasping for air. He then starts to relax and swims to the edge of the pool and climbs out, maybe shooting a glance back to the water where he feels that his lifelong friend failed him and tried to take him out. And maybe that diver might think of the few moments he was submerged and the frantic-ness of his movements, and maybe he'd grimace or shake his head at the memory(or smile and laugh, who the heck knows with doctors), but mostly for him, the moment has passed and time takes him forward, where he'll one day soon, again face the water and he probably won't even hesitate to once again take those two steps and bounce...plunging into some other pool, at some other place, and probably with as much force, or more. (I feel for the pools of the world.)

While me? Well, I'm the one on the side of the pool looking into it's depths and seeing burned on my retina's that diver submerged and frantic. I drop my hand into the once again clear calm water and I can still feel his movements, feel the thrashing of him as the waves ripple out from where he broke the surface, now so long ago(in the scheme of things) and yet, still, the water holds the memory and pain of that invasion. (And if this whole water, diver, breach, velocity, thing is confusing, good, you wouldn't have wanted to go there with me anyway. In my head it makes sense and is about the only way I wish to describe it.) :)

Four hours on my belly on the couch and several hours up and around, and still...ugh. (I went out and bought a donut.)

I told my daughter(as I picked her up from school with tears still leaking from my eyes)..."I'm buying my arse a donut, and I mean that literally." (She was slightly perplexed and then said..."Oh, 'that' kind."

My son as I went to the drugstore, "Mom, they don't sell donuts there, but you know what would go good with one? A Monster." /me sighs

I have my donut. It's a lifesaver, or at least, a quality of life improvement.

I really hate doctors. (I did get several prescriptions. Doc says, should only take a couple of months. Someone shoot me now.)
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Please remember that I am almost a year past this particular point in my life. (But I figured I'd start with the beginning, and this post that I made, was indeed the start of my written journey.)

Ann_i_
Posts: 47
Joined: Oct 2011

1/26/2011

Hmmmmmmm, the stories to tell (or not)... Let's see what I can type out (that makes some sense) in one sitting.

Let's see, On Saturday, January 15th, I went to the emergency room. The emergency room doc ( a female) admitted me. (Yay!, I'm officially a patient.)

She wanted a cat scan done. (At about 11:30 pm, they rolled me out to go to it, then rolled me to a room.) The contrast they use in cat scans is something else. The woman told me it would be warm, but sheesh. About the only way I can think to describe it is (one of two ways actually), a sunburn from the inside out, or, ya know that really hard liquor shot you like every once in a great while because it just can't help but warm all the inner parts while it makes it's way through your system? Well, the contrast thingy, it creates that warm buzzing feeling throughout the body with no wait time and no left over hangovers! (If I could have that machine in my house, I could make a fortune off drunks!) ;)

(I actually wound up having two cat scans before I left the hospital.)

I also had a Colonoscopy. (The fear prior was way worse then the actual procedure.) Shoot, the preceding couple of days as they cleared out my system were worse than the colonoscopy. Course, with this procedure, they hooked me up to oxygen, told me to take a deep breath and release, then another and by the third, I was out. (Next thing I knew I was hearing, "Welcome back.") :)

I did ask a nurse later if I would ever get to see my vacation pictures. (It took her a minute, but she got it and I have a feeling, that was a no.) /me sighs

I have a bit of a problem staying awake at times. (I didn't sleep well in the hospital.) And even here at home I'm finding myself still waking up at old hours and not being able to fall back asleep, but not really comfortable enough to do much of anything really. (Sitting is still my least favorite activity of all time.)

I spent about 10 days in the hospital. (I believe that now trumps the amount of time I had previously visited a hospital, all rolled into one, which were my children's births.)

I accumulated doc's actually pretty quickly once admitted into the hospital. First there was the admitting doc (who then, I believe, turned me over to the first doc on call for the night.) He came in, spoke to me, told me I needed a surgeon, did I have a preference? No, ok, so, he'd get me one. I saw the surgeon by the middle of the second day. (Awesome man, seriously.)

I've never met a better group of professionals. They spoke to each other, they spoke to me and they actually paid attention to what I had to say. (And they all seem to want to string up the clinic doctor.)

They kept me informed, they did paperwork on my behalf, they did their best to accumulate the doc's they could and the tests that each one thought they needed done to best offer their opinions.

Ok, going to work at cutting this off soon. Will add to it later if there is a wish to know more. (Or hear a few of the humorous, horror, fun stuff, whichever that went on in those ten days.)

Anywho, to break this down and bring us to today, more or less. Friday (the 21st) the surgeon was speaking to me, the pathology was finally back and it confirmed what all had thought (though it was slightly different then expected, which was a plus thing as it changes things for the better for me.)

It's cancer, it's anal cancer(they had though rectal) but it's not. anal cancer has a tendency not to wander through the body, it stays where it is, and it is nice enough to respond well to being told to 'get the heck out'. (when you send the message with chemo and radiation.)

So, surgeon wants to proceed, which is to say, on to surgery, colostomy, and a port (for the chemo and radiation.) He leaves my room Friday night, then pops back in and says, "Ya know what, forget Monday, you can have my weekend, we'll do the surgery tomorrow."

The surgery was done Saturday.

I still need to figure out some major stuff, and tomorrow will be a day of phone calls, and pain is not a distant memory yet. But some of the people I'm meeting going through this are incredibly awesome people.

psst, remind me to tell the story about the 'Transrectal (Rectal) Ultrasound' (the doc for that department won't be forgetting me anytime soon.) lol :)

Then there's the night nurse who I actually did lodge a compliant against.(He actually scared me at one point.)

My hubby came to visit me every night. (He so rocked, even nights he looked about ready to drop he never called off or asked for a rain check.) :) Yeah, he's mine. :D

Ok, done sitting for a bit, fighting sleep is about over, I probably said more on some things and missed others completely. (Want a detail, ask, want me to shut up, just ask. Honest.) :) (If you don't ask, this thread just might become my blog for the passage of time and the fighting of this.)

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The thread in question did become my 'blog' to a degree. It's where I posted updates and my feelings as time passed.

Ann_i_
Posts: 47
Joined: Oct 2011

1/28/11

OK, let's see. The next step.

I've made phone calls, still need to figure out medical insurance(lack of) but it's all still in the works. (I need to find some time when I am mentally alert to gather together some of that financial information that is needed.)

As for treatment:

I called around yesterday trying to find one of the doc's who would renew or give me a new prescription for pain meds. Didn't have much luck, we got snowed in a bit here, places were closed.

But one of my doc's offices called me to arrange an appointment, I told the woman my pain dilemma, she said she'd have someone in the office call me back. Within five minutes the oncology doc called me back(she's pregnant and looks about to drop any day.)

I told her the pain I was in, she asked what they sent me home with. (Percocets -sp ch) and how many had they given me. (20) She said..."What? What do they expect you to do with them??"

She immediately wrote me two new scripts, had my girlfriend pick them up, drop them at pharmacy, mom and daughter went and got them when done. I'm now on Morphine Sulfate. (The pain is there still but I am starting to function better.) I still can't sit on my stupid arse. /me sighs (How can a writer write if they can't sit???)

hmm, whoops, ^mild vent, treatments.

I have an appointment monday with Radiation doc. She's going to do a Pet Scan. (I've heard a lot of medical terms in the last week, but this one still gets me. I mean, c'mon, do I bring my pets in and see if they have it too? Then someone told me what the test does, it looks at the whole body and finds any and all cancer within and relates it. I think.) She needs to know where to target the treatment. (I'm seriously hoping it will be directly in my bum, honest.)

On Tuesday I see the surgeon again, he'll check the port and the colonoscopy bag. Hopefully give me some better instructions on care and maintenance. (Though I think I'm doing good, though the Morphine makes me a little leery to work the bag/clean and change it while alone.) I'm not feeling at the top of my game right now, mentally or physically. (My legs shake a bit. I suppose maybe the morphine?)

I just got a phone call, after the pet scan monday, that doc wants me back on thursday. She wants to 'mark' me. (I'm assuming this is where I get my first tattoo.) Think they'll let me pick a design? I really like butterflys. ;)

Friday I go and see the chemo doc (The sweet pregnant doc who understands pain tolerance and my lack of ability to do that currently.)

As for personal, at home care. My girlfriend Kim has been a founding stone of solidarity to me. Cooking, cleaning my house, she's made me jello(with fruit cocktail in it), she's run some errands for me and she's here almost every day and when she isn't here, she's calling. (And she has 5 kids, two adult sons and 3 little one under 13, one of whom has a major health concern himself.) She's awesome.

I also have a friend who keeps me entertained and on track with phone calls and reminds me of where I'm heading and what's coming and that I can do this. My hubby is here every step of the way and refuses to hear anything negative. He keeps telling our daughter that "Mom needs to be a couch potato for six months, make sure it happens." lol (It's actually not that hard.) lol

On the stupid end, well, I took a fall yesterday morning. walking up stairs(I hardly ever fall down the things, going up however has always been a challenge) I froze not knowing how or what to protect in my splaying across the dogs mud room floor. Bloody right elbow, bloody left knee, cut pinky and sore but fine. (Aside from the lectures I keep getting about no steps, no downstairs, no upstairs, couch potato, remember?! Yeah, yeah, I got it. sheesh.

Anywho, I think I'm doing ok.

While in the hospital, I was dealing with the pain (ok, not well, but I was doing not so horrendously, in my opinion.) But seriously, I was laying there, rocking myself, tears leaking out my eyes and this song came into my head and I was singing the chorus. (Yeah, life's not so bad.)

Joe Nichols - The Shape I'm In. (This is the song that went through my head then.)

http://www.youtube.com/watch?v=J8cerA17pss

I had it linked, not sure how to link here. (Hopefully, the above works.)

Ann_i_
Posts: 47
Joined: Oct 2011

On February first while on the phone with my dad, he passed away. (It was a set back for me emotionally because he had always been one of my greatest supporters. I wasn't sure how I was going to handle things without him to help me find the humor and the strength to get through it all.)

Ann_i_
Posts: 47
Joined: Oct 2011

3/31/11

Howdy peeps!

I thought I'd drop by and say hi. Sorry it's been awhile. Good days, bad days, horrible days, and still not sitting on my tush yet, but it's getting better.

On the bright side, Morphine has kicked my Psoriasis butt. Cleared my skin right up. lol (Don't worry, be happyyyyy... tee hee hee) I may claim pain until I'm 80, who knows, they might keep me supplied. ;)

20 days of radiation now behind me, 5 days of chemo done. 17 days left of Radiation(unless they change it on me) and 5 days of chemo left (starting Monday) which will probably throw me back into 'bad' days again. (But I'm crossing my fingers that it just passes and doesn't kick my butt.)

I'm down to about 150 lbs (which is a drop of about 70 lbs since June). People actually don't recognize me at first anymore the few times I've been in public. (Public service announcement: Cancer is not the optimum way to lose weight. Try exercise first and dieting.)

Last night was my daughters final performance night (her first High School play, Hello Dolly!) Well, ya know, I couldn't miss my baby girls first stage appearance at the High School. So, hubby armed with my kneeling pillow and me with a small bottle of water, off we went. Hubby tried to get security to get me a chair to lean on, bah, they didn't quite get it. So I wound up far right of the theater seating by a wall behind the last seats. (Didn't have to worry about anyone bumping my bum.) Tossed the pillow on the floor and got down on my knees - no funny stuff there! ;)

When kneeling was too much I just sat side ways on my pillow on the floor and listened to the performance, but made sure I saw my daughter each time she was on stage.

I got a few odd looks, another security person asked me if I was alright. But hey, I saw my daughter in her play and that's what matters to me! :)
(My daughter was very excited that I attended. It made it worth going.) :D

My hubby has proven beyond a shadow of a doubt that he's my soul mate. On one of my bad days, when I spent (literally) the day sleeping, I woke up at 2am to a dark, quiet house and got up for a bit and found a vase with flowers on my computer desk. (Waking up disoriented and then seeing those made me feel so much better.)

I've got a few friends who are going above and beyond in helping me out. One makes me two meals a week (on her days off) one drives me home from my appointment everyday and my mom takes me to my appointments(and it's time we are using to get a closer bond since my dad passed.)

I think of you guys often and the posts in this thread lift my spirits more than I can say. Knowing I have people thinking of me and pulling for me makes making it through one more day just a bit easier.

I'd be around more but typing is a bit of a bear for me, what with kneeling over the back of my computer chair, my arms and hands go numb so I have to stop and get the feeling back in my fingers before I can finish typing. lol

But I'm at the half way point and overall, I'm much better than when I started. Just dealing with different symptoms now, but not in intense pain anymore. :)

I think I've lost all sense of modesty in the last couple of weeks. Laying on a table with Radiation beamed directly at my pelvis while a tech (I have two who are usually the ones who attend me,one male, one female) using markers to redefine the set up lines on my person. (Sheesh, and I yelled at my kids for drawing on their arms with markers.) I feel like a canvas that's been repainted over and over. I'm half tempted to take pic's, but then, um, no. lol (I'm not quite that far in losing my modesty.)

Anywho, I'll try to check in again soon. :)

Ann_i_
Posts: 47
Joined: Oct 2011

4/3/2011

7 treatments left! :)

And today, I can sit!! (OK, there's still a pillow under my tush, but still, I'm actually sitting properly.) :) (Now, just hoping I can tomorrow. Fickle darn tush.) lol

OK, a story from the hospital.

My oncology doc (the pregnant one) had come into my room (one of the first times I had seen her) and she tells me that they are waiting on the pathology report but that she already knows it's cancer, so much so that she tells me, "If it comes back negative, I'm sending it back out to be retested." Nothing like having someone know their job. So since she already knows it's cancer, she runs down my treatment options for me as she sits on the end of my bed. Then she tells me, she's not leaving until she's sure I've grasped what everyone is (or has been) telling me. (It felt just a tad bit condescending. But, I figured, shoot, I'm laying on my side, my eyes half closed, somewhat rocking myself and looking a bit -ok, maybe a bit more than a bit- out of it, she has a right to question whether or not I'm understanding what everyone is telling me.)

So I inform her that it's all in my head, she gives me a look. So I inform her of everything that's been told to me by ALL of my docs. The condescending ends. :) (I think my docs figured I wasn't quite getting it because I wasn't quite reacting the way, maybe, they figured I would/should react.) I was just (I wouldn't say happy but) well, I was glad that there was finally a diagnosis with a treatment that would actually lead to an end to the pain.

So the pathology report comes in and she comes back. (My surgeon had already been in to inform me of the findings, as well as my primary doctor.)Paperwork for me to sign and she says...."I'd like to run an HIV test on you, will you sign the permission slip for it?"

me: "Why? And don't you already have that information?" (I couldn't help thinking this was something the hospital should already know about, I mean, I came in due to bleeding. It's the first test "I" would run.)

Her: "The hospital has the information but it is not at my disposal. I need your permission to have the information."

Me: "Why do you feel it's necessary?"

Her: "Well, we find that patients with your type of cancer usually are HIV positive." (There was a tone to her voice that put me on edge, just a bit. I think, maybe, that condescending tone crept back into her voice.

Part of me goes numb, and my brain is trying to figure out why this would be the case, and what comes out of my mouth is...."Well, I've had one lover my whole life, so if I'm positive, he's dead!"

She just looks at me. (One of those priceless moments you really wish you have a camera for and tells me she'll come back with the paperwork and they'll draw the blood in the morning.)

I let it slide from my memory. I get home. My friend Kim is over, my daughter and her are sitting across from me and my friend tells me.

Kim: "I looked up how you get anal cancer."

My daughter: "Me too."

Me: "What? Why did you look it up?" To my daughter.

Curiosity

Kim: "There are three (what would you call them) reasons(?) for anal cancer."

Me: "Really?" My daughter turns a little red in the face. (Oh, this is going to be good, I can tell.) lol

Kim: "One is that you be over 60. And you aren't anywhere near 60." My daughter nods and says.."I found that one too."

Kim: "The second one is that you have multiple lovers." My daughter looks at me and then at Kim and they both say...."And that isn't the case."

Kim: "And the third thing is that those multiple lovers all be anal ones, and we've talked and "I" know that's not the case."

I look at my daughter and she's shaking her head.

And I couldn't help thinking, OK, finally, now what the doc asked makes sense. (so nice to know your doc thinks you should be out standing on a corner somewhere.)

I tell my daughter, you know I would never...(I didn't get to get any further as she looks at me and says..."Mom, I know you haven't cheated on dad." (and I got that look that only your child can give you when they think you're being incredibly stupid.) lol

Kim: "So, how the heck did you get this?"

Me: "I have no idea and the doctors never did a work up or questionnaire or even talked to me about life styles to figure out what it could be. I guess they are just putting it down to smoking."

I am a bit frustrated by the lack of concern for the how's and why's but I suppose I'll never really know. (And most likely the smoking is a major factor in it. But it would be nice if they took the time to do a history or something to at least make an effort at ruling out other things.)

And, well, it's made me a bit embarrassed to state my type of cancer. (I want to say..."Oh, I have anal cancer, but honest, I didn't get it the usual way.") /me sighs lol

I keep thinking, everyone's going to go home and look it up and go..."ohhhhhhhhhhhhh...well, who knew Kim was like that!?" lol

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I do hope you all understand that I really didn't have any clue and was on Morphine and thinking wasn't exactly my strong suit at this point in time. (I was just trying to connect the dots, and the information I was receiving and finding online wasn't really helping me a great deal. Not to mention, I had really scared myself when trying to look things up online and gave up. Ignorance seemed better than scared stiff.)

Ann_i_
Posts: 47
Joined: Oct 2011

I'll hold my journey up here for now. (Life things to do. Children home from school, errands to run.)

duckyann
Posts: 162
Joined: Jun 2009

Welcome to the forum. I am sorry that you had to go through this and actually I am sorry that any of us had to go through this. I am 28 months post treatment and boy do I remember the pain and it was horrible. I am happy that you are doing better and you have such a great sense of humor!!! Yes we sometimes need that through this or I am afraid we would be crying all the time. Keep posting!

Nancy

shirlann54
Posts: 161
Joined: Aug 2011

Glad your getting better you have been thru alot.I,m 9 mo out of treatments .I,m doing better Now that i,m healed from the last biopsy they took in May.That showed no cancer they had to make sure .I have some very good Dr's too.

Ann_i_
Posts: 47
Joined: Oct 2011

4/17/2011

As of Tuesday (April 12th) I finished my rounds of treatment. I now need to wait 6 weeks (the radiation will be doing its job through this time period as I continue to get rid of the cancer and infection and heal) for the Pet scan and (/me crosses fingers) the all clear. :)

After the all clear I can schedule the surgery to have the colostomy bag and port removed. (Well, the colostomy reversed, which will rid me of the colostomy bag.):D

I see the chemo doc on Monday and may have more information then. (The radiation doc said this type of cancer can sometimes going into the lymph nodes in the pelvis, then into the stomach, and finally into the chest. But, I'm going with the chemo doc who told me in the hospital that this particular cancer doesn't like to travel much and stays where it is!) :)

Edit: Pet scan schedule for May 25th.

Ann_i_
Posts: 47
Joined: Oct 2011

I saw one of my oncology doctors this past Monday and she really set my mind at ease. (The chemo doc, although condescending at times and short of words most of the time, she told me...)

When I asked about the Pet scan and stated my worries(due to the other doctors words), she told me that she really felt they had caught it early( her words: If not, we would have dropped the radiation and went with a more aggressive chemo treatment.) She feels that I should be in remission now and that I shouldn't be worrying about the Pet scan results. (Oh, and I should quit smoking. /me sighs) Oddly, my feelings are torn, but I have set it in my head that when/if I get the all clear with the Pet scan, quitting becomes priority one. um...right after colostomy bag getting removed and port coming out.) Hey, a girls gotta have a list. ;)

She also mentioned in passing (it was too funny) that my HIV test came back negative. (Like I didn't already know that!?) :) Nothing like telling me 3 months after the test. (In her defense though, she was out for maternity leave through all of my treatments.)

Ann_i_
Posts: 47
Joined: Oct 2011

5/24/2011

Due to an infection, my Pet scan has been moved to June 8th. (That is all.)

6/8/2011

Sorry , but it's going to be another two weeks until the Pet scan gets done. :(

Due to me still being in a healing state, its been postponed again. June 22 is now the date for the Pet scan. (This is so disheartening. I really wish the doctors would just fess up to me being 'different' or something.) They don't want false positives. (Or at least, they don't want to have to worry about false positives.)

Being told the radiation would be finished doing its job in six weeks and being now into week nine and it still isn't finished, or if it is, I'm not done the healing stage of it all, is ...I dunno, scary, frustrating, worrisome...grrr...something.

And it doesn't help when I tell the doc today about my 'aches' and though she admits the *leg pains are more than likely from the radiation, she said I shouldn't have arm pain. (Or at least, the arm pain made her look confused for a moment before she said it shouldn't be from the radiation.)

*I hurt from my hips to just above my knee on both sides on the outside and from shoulder to almost elbow (on the outside) of both arms. (Raising my arms above shoulder level hurts, lifting a bit more than normal, hurts.)

/me sighs

I get the impression they want to show confidence in their knowledge but they don't have all the answers and aren't really willing to state as much. (Shoot, at times, I think I know more about this cancer then they do, or at least, how it acts and what it does and how the treatment works on it.) Yeah, I know, I'm the one that went through it, but shouldn't they know more about it so they can tell me what to expect? (But they don't even seem to want 'my' knowledge of what I've been through. Which makes no sense to me as they are the first contact for new patients, shouldn't they want to be informed so they can inform patients what to expect?) or does that make too much sense??! Grrrrr
I didn't tell them half the stuff I went through during the treatment and recovery process. (I didn't want to seem like I was whining or allow myself to wallow in what I was going through.)

Crud, I need a therapist. /me sighs and goes to find a brick wall to talk too. (Hey, that's just as good as a therapist.) ;) tee hee hee

Ann_i_
Posts: 47
Joined: Oct 2011

6/8/2011

I've been an item of observation before and am even in some medical journal somewhere. (My Psoriasis was really bad when I was growing up.) So nice to feel like an ongoing experiment. (Most dermatologists and regular doctors I've been to can't wait to treat me. They are not happy with me when I refuse to have treatment. Aside from getting whatever is going on under control.) It is the FIRST thing any new doctor I see wants to treat. Forget whatever I actually went to the doctor for, they want to 'handle' my psoriasis first.) /me sighs heavily

And yes, you guys are wayyyyyyyyy better than a brick wall. I just haven't really wanted to burden (or whine) about what I've been through. The doubts, the pain, the grossness(this being a big thing for me, truly, do you want to hear about a weeping arse and parts of it actually sloughing off? And my butt being out of shape and puckered and raw and ..and..well...see?)

I can't help but think about all the times I thought my arse needed to lose weight and then, what happens, I lose parts of my actual arse...seriously, the irony of that gets me every time. lol

I know the upper leg pain is radiation related. (Shoot, some of the paperwork they gave me early on stated that I was to hold them blameless should I lose the ability to walk-due to damage to legs in the hip area. I forget the actual wording, but that was the gist of it.)

As for the arms? That I'm not sure about. I do know I spent way too much time with my body propped by my elbows and forearms, throughout treatment and recovery. And that the stiffness/pain that is in them feels the same as the leg pain. (I lost 70 lbs, I'm wondering how much of that was muscle. As my calf muscle -which is an obvious place of muscle/mass loss- seems much smaller now.) Plus, the surgeon put the darn port in my left shoulder area. So I didn't move my arms that much throughout the whole process. I couldn't have worn a bra if you paid me. The strap comes down right over the port and ...well..the weight that the strap carries put too much pressure on the port to be comfortable. So bra-less was how I went through treatment. And because most movement made me more aware of the port, due to its location, I didn't move my arms a whole lot, or carry anything of any weight. (I also slouch now and I didn't before. I actually am trying to remember to pull my shoulders back and stand straight.) All of that could add up to shoulder pain that radiates down the arm. (Who knows.)

I'd look it up, but sheesh, every time I look up a medical thing online, it scares the daylights out of me. lol

I don't know if I should push pass the pain and try to redevelop muscle or if I should take it easy and heal first and then work up gradually. (I spent four hours in a mall shopping with my daughter a few weekends ago; for her birthday we spent the day shopping, and I paid for it for three days. Standing up from a sitting position was semi-torture for those three days.)

/me searches for a 'what to expect when you are recovering' book. (And to be honest, this wouldn't be much help unless it was my type of cancer specific, and with the addition of the infection that went with it.)

I know this all sounds grumpy and irritated but in all honesty, I am in a much better place now then I was when this started. I am grateful for where I am now in this process. I just wish I knew more about what I should be experiencing and what I should be telling the doctors so they can help me.

Me:"This hurts."
Doc: "Oh, that's normal."
Me: "Um, OK, so what do I do about it?"

/me tries to remember to ask doctor on the next visit.

Ann_i_
Posts: 47
Joined: Oct 2011

6/22/2011

Pet scan done. (One and a half hours of sitting in a dark alcove, and a half hour of being moved in and out of a tube.)

I forgot just how claustrophobic I was. Working to lock down panic attacks as they creep up on you is soooooooo fun. lol

Doc appointment July 5th. (But she said I could call in four days for the results.) I'm calling first thing Tuesday morning.

7/5/2011

June 22 was when I went for the PetScan. I did receive an answering machine message(I've been doing a lot of running around for my kids and my niece/mom/great niece, since I returned to driving.) that stated my petscan looked 'pretty good'. I wasn't positive what she meant by pretty good, so I figured I'd wait until my appointment today to find out all the details.

I went and she again told me the Petscan looked pretty good.(I have a few black spots in the imaging on my lungs, but they've been there throughout all the scans I've had done and they haven't changed shape or size, so more or less they are nothing to really worry about.-Or at least, I'm not going to stress over them.)

I go tomorrow to talk to my surgeon about when I can have the colostomy reversed and the port removed. (and lucky me lol, get another *colonoscopy.) *Spell check, I'm too lazy to look it up. :P

My oncologist has also now suggested(and it's being scheduled) a bone scan. I have a burning pain in my upper arms and from my hip to my knee on both sides. (Mostly when I stand I need a few seconds to get my weight under me and take a few steps and then it eases. As the day goes on, depending on how long I've been sitting, it gets harder to stand up.- though not impossible.) :)

She feels it is probably muscle atrophy and possibly nerve damage caused by the chemo treatments. But she says she'll feel better and I probably will to if we just go ahead and check to be sure. (I'm not even going to think about what it 'could' be.) I'm leaning towards the muscle atrophy and nerve damage.

As for my tushie, it's healing well. And the doctor figures the rest of the healing will take place after my innards are returned to their previous state of working order. (See, I can state my current healing state without mentioning bowels or arse. I am sooooo wordy.) ;)

Tomorrow I will mention to the surgeon about the fact that I am now showing the adhesive allergy that my sons have. (When I apply the adhesive that holds the wafer to my skin, it feels like an *acid peel. The feeling does diminish with time to a slight burn and itch.) Nothing like itching where you can't reach it. lol

*Not that I know what an acid peel would feel like, but I believe I can now guess with some accuracy.

Um..aside from the above, I actually feel great!! :)
I do, honest. :D

7/9/2011

Saw my surgeon. I need another Colonoscopy before the surgery. (I haven't scheduled this yet.)

And he informed me, I have a hernia. (I had thought so, just stinks having it confirmed.) It's in the area of the colostomy. He said he'll repair it when he does the reversal surgery.

My bone scan is Wednesday.

-----------
Random thoughts:

One of worries going into this was that it would age me as nothing else has (not even time. I think you know what I mean. When you see people and they seem to have aged overnight. Stooped over, no longer as agile or able to do what they did before.) This is still a main worry for me.

I'm not ready to be or act 'my age' dangit. I'm still young. (I'm not admitting defeat yet, and probably won't. I'm too stubborn to give in without a major fight.) ;)

I will gain it back! :)

Ann_i_
Posts: 47
Joined: Oct 2011

7/13/2011

Bone scan done today. (I thought the Pet scan was bad, the bone scan had me chanting 'relax' mentally for the whole 45 minutes.)

Being told to not move, having your feet taped together, and then having a very heavy looking piece of equipment bare inches above your body (and it's darn near the size of your body) slowly (ohhh sooo slowly) working its way down your body, is very panic inducing for me. (I hate being restrained in any way, shape, or form.) I had a panic attack once when having a day at the spa. The mud mask combined with hot towels draped around my face, and a heated blanket covering my body, raised my core temperature and made me feel like I was suffocating. (I barely restrained myself from ripping the mask off. But my daughter had to get the woman back in the room, twice, the second time, I had her remove it early. It was a mommy and me day at the spa for us.) We haven't done one since. (My panic attack scared my daughter.)

I am such a WUSS!! /me sighs

My colonoscopy can't be scheduled until after I see the doctor who will do it, and since he's only in town on Tuesdays he can't see me until August 3rd.

8/8/2011

Today I had a Flexible Sigmoidoscopy (A different type of colonoscopy.)

The doctor talked to me afterwards.(After showing surprise that I was already up and eating. Hey, I hadn't eaten since midnight and it was 3 in the afternoon! That's thirteen hours without food, I believe it may be a record for me!) He said everything looked really good, although he told me I appear to have an *ulcer in there.(And he feels it's probably from the radiation treatments.) He took 10 biopsies. (So a few ...hmmmm symptoms will be with me for a few days due to how many he took.) And a part of me wonders if he thought everything looked so good, why the heck did he take so many? (But, I'm going with "I really like thorough docs." and leave it at that.) ;) lol

* I've been a bit on edge the last week or so, I was experiencing pain again and not pain that I could associate with the external still healing bum of mine. Him telling me I have an ulcer-ated-something-or-other actually eases my fears on what is going on in there. (I really thought the cancer wasn't gone and was growing again, due to the type of pain I was starting to have. Being told there's an ulcer there really puts that pain in perspective and it makes sense now.) And doesn't scare the heck out of me.

Just a curious thought, the Sigmoidoscopy 'blew' a hole in my ostomy bag(Actually, the wafer, but, ya know, whatEVVVER!) How the heck can that happen? I'm not connected!! (And the darn thing was BRAND spanking new. I just put it on yesterday! Dang it!)

Ann_i_
Posts: 47
Joined: Oct 2011

9/4/2011

I'm on an emotional razor's edge. Grrr I can't seem to not get snippy or have double meanings to what I'm typing. (And I am editing myself like crazy on what I do post. Taking out the really aggressive parts.) And even though I can tell that some of what I'm posting is still snippy, I can't seem to bring myself to edit it to rephrase it.

(Some of this refers to the position I have with the website that I volunteer at.)

Since I've tried venting to people in my life and that failed. (I'd start feeling like crying and change the subject or even start crying, trying to get it out, I'm going to vent here.) Cause, ya know, ya'll aren't REAL people, just imaginary characters that box on the floor puts on a screen.

And maybe finally getting it out will help me deal with it better. (I guess I'll find out.)

So, we'll go for the sum up: (To bring it up to date.)

Pain, misdiagnoses, scared, "If I admit you, will you stay?", Cancer (I got this. A true diagnoses with an end in sight to the pain. A diagnoses and a treatment course. Progress.)

Treatments - scary at times, but mostly doable. (And at no time did I feel like lying down and giving up. Well, OK, maybe that one day I slept through the entire day and into the night with nothing to eat and not caring about food or anyone, including myself.) But that passed.

Chemo scared me because it effected my personality. It altered me chemically.

Radiation only scared me once I saw the damage it was doing to my skin. (Well, that and that the infections ruptured through my skin to drain. THAT was scary until the doc confirmed what I thought and seemed to dismiss it as normal.)

Getting done the treatments and getting a certificate of completion made me feel like I was on the mend. (Aside from wondering, what the heck, did I graduate grade school? A certificate of completion? Who am I suppose to show this to? Doc: So I see you had cancer, did you complete the regime of treatments? Me: Yes Doc: Really? Me: Yes, see, I have the certificate to prove it! (Really, is that ever going to happen?)

Learning to live with a colostomy, hard at first, then easier. Still a pain in the butt. Cleaning it daily, and multiple times daily. Taking medicine to slow down my digestive system so I actually gain some of the nutrients from what I'm eating. Changing the stuff out once a week, sometimes it doesn't even last the week. Using surgical tape to keep it on me because my skin is reacting to the glue and paste that stick it to my skin and it peels away from my skin within three days. (And I'm paying out of pocket for the supplies which amounts to just under a hundred dollars every five weeks, which is now about a hundred dollars every four weeks due to the problems with my skin reacting.)

The hernia around the colostomy, getting worse. Coughing? Not such a good idea, that hurts. (And I have allergies, so the coughing isn't going away when I lay down at night and have to curl into a ball to take some of the pressure off the colostomy and hernia.)Found blood around the bottom edge of the incision tonight. And it seems to actually be sinking back into my skin. (I wouldn't think it could do that. But what do I know?)

My reflexes seem to have returned, no problems with the way I react. Or in gripping or holding things.

Brain seems like the thought processes work correctly. (Though short term memory seems worse than it did prior to treatments. Even leaving myself sticky notes doesn't help at times.) Putting notes in my phone, unless I have them buzz me, I forget to check that I have notes in my phone.

Writing things out; fine. (With editing for snarkiness, but that's mostly recently.)

Speaking; not so fine. I can't seem to articulate things well anymore. I need more time to speak my thoughts. I stumble, sometimes stuttering, through what I am trying to say. And I can't seem to fully think it through to an end. (I need time and distance to let it soak in and then I can see the end results of possible things.) The quicker I act, the less likely I've been to have cleanly thought it through.

It's 3:40 in the morning, and I'm not sleeping, again. (And just had my son, who should be sleeping, disrupt my train of thought.)

Leg and arm pain. Doctor thinks partially arthritis (side effect of my Psoriasis), muscle atrophy and nerve damage. (Think limb falling asleep and then waking up; I carry that feeling (a slight burn sensation almost) just about constantly. And right now, trying to sleep, it's worse. Laying on my side (either side) hurts at the contact points, hip and shoulder. Lying on my back (the fronts a no go with the colostomy and port) is uncomfortable. Let's just say the rear is still healing and it seems like when I'm laying down a lot of my weight seems to be positioned differently than when I'm sitting. Or maybe it's just dark, quiet and makes it feel differently. The nerve damage can deteriorate with time. That scares me. (How much worse can it get? OK it isn't unlivable at this time, but still...)

My elbows have psoriasis bad due to me still holding my weight with my arms and placing my elbows on the arms of chairs to use to shift myself and start to stand.

Standing, sometimes easy as anything, other times, not so much. I need to take a few seconds and get my feet under me before I can start moving and then those first few steps hurt. Walking up stairs I feel like I'm 80 (and I probably look it as I have one hand thrown out in front of me for balance and for grasping anything I can for security. I don't quite trust my body, or maybe more precisely, my legs to stay under me. I tend to watch my feet more when walking, to make sure I don't slip or fall or trip over something. Going downstairs, about the equivalent of going up them.

(Interrupted again, will the boy ever go to bed?)

Natures call? Yeah, I'm waiting for those to work correctly again.

I think that's about all of it that seemed kind of normal to me. And it was all pretty much stuff I was warned about. (Aside from feeling like a skin break out is lurking and getting ready to erupt on my hands and feet. But I'm hoping it gets itself under control before it does.)

Ann_i_
Posts: 47
Joined: Oct 2011

So, what's got me on a razor's edge... (Boys, you are probably going to want to skip this part.)

I'm not even sure how I'm going to get this out, it's freaking embarrassing. (But it's medical and I'm going to firmly grasp that idea and keep it in mind as I try to write this out.)

This is SOoooo frustrating. I went to the doctor and I tell her, "This is a bit embarrassing, but..."

She says, "Oh, that's a possible side effect for pelvic radiation treatment on women. Your radiation doctor should have had you doing exercises during treatment to help prevent it. Didn't they tell you about it?"

Me, No

I'll quote from the paper they gave me..."A possible side effect of radiation treatment to the pelvis is narrowing and shortening of the _____"

Try hitting a brick wall, with pain.

I go from chemo doc to radiation doc, where one of the nurses takes me in a room giving me the sheet of paper and a box. She pulls the item out of the box. (I really know that ONE day I will laugh about this, I mean, seriously, you can't help but laugh about it.) She calls it a 'pelvic dilator'. Yeah, that's exactly what 'I' would call it. (What? No batteries?)

I cried (literally) all the way to my car. I could NOT get a grip on myself. (Even apologized to the nurse.)

I can take just about anything (I think) but this? This was above and beyond for me. And it could possibly have been prevented from getting this far with a little bit of a warning? (This is what is warring inside me.) It's brought me to my knees as nothing so far has and I can't seem to get beyond it yet. And I probably won't until I grit my teeth and actually do the 'exercises'.

I can't even bring myself to use the darn thing. Just the thought of the pain I'm going to have to go through to get to a point where there will be no more pain is mind numbing to me. (It's a brick wall inside, seriously.) And it hurts. Mother natures call hurts. What the heck kind of pain am I going to have to go through in an area that does not go for pain when just using the bathroom hurts like heck.

And the size they gave me? Um, no. (And the nurse saying it was the normal size one they gave out, but if I had too much trouble with it to let them know, they have one a bit smaller.) Yeah, um, you got one approved as dental floss? Cause that's about the only size I'm willing to start with!

I went to the adult store. Talked to the guy. (Yeah, figured it would be a man.) He then called the owner, she went through their products with me and we accessed them for possible working for me. Nope, not happening. She told me to come back the next day, the girl that works is handy with a computer and could find it and maybe order it for me. (I'd already done an internet search but figured it might be safer and smarter to go through a business that deals with these products then guess on manufactures and quality issues.)

The women suggested I try a medical supply store. I left the adult store, went to a local pharmacy, talked to the pharmacist. The only reason he knew what I was talking about was because his own mom had the problem after cancer. (She wound up with surgery to put - more or less - a ring inside to hold her open.) Yeah, this so helped my mental state, as well as my emotional state.

Next day, back to the adult store. The girl was friendly and tried to be helpful. (I wanted to grab her laptop and do the search myself.) She finally said sorry, she couldn't help me. (seriously, she needs to learn how to do searches.)

I had to order more colostomy supplies, so off I go to the medical supply place. Course, Bud's (another male, figures don't it?!) my 'go to guy' at the supply place. They don't carry them, they don't have a supply place that does. He talks to one of the girls there and they are trying to remember the place they sent a women who needed a pessary. (It's not the same thing, but it is for the same reason. I think. I don't know. I haven't researched it.) Every time I research something, I'm kind of sorry I did. (So they told me a few things to make my online search more specific so that I might find a semi local supplier.)

By the way, what I'm searching for? A kit. (Something that comes with one so small, even I might actually try it and work from there.)

And in the meantime? I'm stressing over should I be attempting it and trying to get myself to think I can deal and work through this. (oh yeah, that's gotten me far. Nope. I don't intentionally inflict pain on myself and definitely not to that part of my anatomy.)

Hey, I actually got through that without crying... It's a start.

Ann_i_
Posts: 47
Joined: Oct 2011

Replied to someone who offered links
----------------------------------------------

It's actually called "Chemo brain". I have done a little research on it. (I needed to know if I could trust myself to still be thinking straight. I'm still raising kids and I needed to reassure myself I was still up to giving them *sound advice.) And it may or may not improve.

*At least, ya know, my idea of sound.

Thank you for the links. I will check them out tonight when I have a little privacy to pull up the windows for them.

This one is the most frustrating for me (while speaking):

Trouble remembering common words (unable to find the right words to finish a sentence)

I don't have the problem when writing(at least, I haven't noticed it.) Just when speaking. (And I've tried to go back to what I use to do for my daughter when she had a lisp, with the idea of using other words or describing the word I mean, but I draw a complete blank and can't even do that most of the time.)

-----------------------

I try to take it all in stride. (I'm still here and I refuse to be limited or give up.) I figure, with practice I can either, one, overcome it, or two, learn to slow down and give my brain a chance to catch up with my mouth.(or vice versa which ever one is slowing me down and causing me to stumble.)

The Cancer foundation offered to give/find me a cancer buddy. (Someone who has already gone through the whole process and has my type of cancer.) I didn't have them do it at the time because my cancer was complicated with the infections/abscess's and I worried that our treatments and symptoms wouldn't match. Which would have made me feel worse instead of better. And the thought of giving the Cancer foundation a list of things (colostomy, port, infection, anal cancer, female, my age range, chemo/radiation) by which to pair us up seemed a bit, well, anal of me.

But I thought if we didn't have enough in common, the pairing would do me more harm then good. (Nothing like having someone tell you they never experienced that and you can't get a hold of your doctor for a weekend or holiday. Cause darn if it isn't those times things go wrong, or seem to go wrong.)

I have an appointment on Wednesday with my Radiation doctor. I'll ask her about a general, local support group. (If there is one and how I can join it.)

----------------
9/8/2011

OK, even though I'm still lost on the 'trying to find THE humor in this', I do see the humor of some things.

Like:

Going to the radiation doctor today and finding out they wouldn't see me unless I paid them 50 dollars (cash or check) and since I hadn't known I was going to be charged for missing a previous appointment(I misplaced the card and honestly forgot about the appointment.) I did not have 50 dollars cash on me or the check book from the checking account that could have paid it. (And got a lecture from one of the doctors about finishing paperwork for charity care with the hospital. Which I should have finished and haven't, my fault there. But really, a lecture?)

Had they told me when I rescheduled the appointment, I would have had the money on me. (Now they can't fit me in until the 27th.)

OK, I just checked the registered letter(when I missed the appointment they sent me a registered letter telling me that I was being treated for a serious medical condition which requires close follow up. um..duh), and the only thing that could even be construed as being near what he told me is..."We will be happy to schedule a new appointment for you. If you cannot keep this appointment, please call and let us know at least 36 hours prior to that appointment so that we can give that time to another patient. If you fail to let us know, there will be a rescheduling fee."

Anywho, (that wasn't the humorous part.)

As I left the exam room, having been lectured there by the doctor who informed me he wouldn't be seeing me today.(kind of twilight zonish there) :)

I walked up the hall and was going to go around the corner when the nurses aid (to the doctor I usually see and who was sitting across from her) stopped me by asking how 'my... thing' was working for me. (While saying 'my thing' she hesitated, trying to find the word to use for it and instead did an OBVIOUS hand gesture.) The doctor stared at her, me? I said (as once again freaking emotion washed through me and my eyes teared; seriously, can I talk about this in person without the emotion??) Not so good. (and explained a little about it)

The doctor however is still staring at her and she says..."What? She knew what I meant!"

By the way ^that^ is the humor part of the visit.

Doc turns to me and asks me what size they gave me originally and then tells the nurses aid(the hand gesture women, who just happens to be the mother of one of my girl scouts who graduated a few years ago.) to go get me the smaller one. Then explains gentleness in using it, persistence and no force.

Then tells me that maybe I should schedule a gynecological exam and let the doc push through it to start me off. (Um, wait, the same place where the doc did a high dive from the high platform? Um..nooo freaking way!!)

Did I mention that this is pretty much a 'for life' thing I now have to do. (That is, once I actually succeed at doing it the first time.)

So I am now in possession of a smaller dilator and heading for the doors beside an older woman (pure white hair, small in stature, a little bent over and using a cane to walk) and she says to me..."Good luck with that."

I'm still emotional and gave her a questioning look to which she replies. "I had to do that -as she waves at the small box in my hand and she doesn't look like she was thrilled with it or that she had much success with it - she says.."my chemo doctor was *issed at my radiation doctors, he claimed they radiated me too much and caused the problem." (as she waves her hand from her chest to her hips)

Oh, awesome. (I didn't say this to her it's just my ending thought for the day.)

9/11/2011

Grabbed a cup of coffee from Dunkin Donuts last night, hit a local park, and cried. Sheesh

I miss my dad.

It's been a crappy emotional weekend.

I see another coffee run coming tonight. :(

I try not to whine. (I really thought I nipped/squashed that part of my personality a few years back, apparently, it needs more work.)

On the bright side.

I had my hair highlighted for the first time in my life. (And I like it!! I'm back to the blonde I use to be. Or ya know, somewhat. I didn't color it all, just highlighted, but it brought the blond back out.)

The small one was usable. (Didn't kill me, I'll see about working up to where I need/want to be.) If you see a post that says "Score", ya know, ignore it, I'll just be bragging.

I'm getting my paperwork tackled.

I'm hooked on McDonalds sweet ice tea, again! (Every fall I ween myself off it again. You'd think I'd just not go there, but, glutton for punishment I guess.)

Ann_i_
Posts: 47
Joined: Oct 2011

I guess I'm going to use this thread like a blog or a diary. I have good days and bad days, emotionally and physically.

Some things make other things look worse or make the whole seem worse. Or make me look at the whole and wonder what the heck is going to happen in the future.

Last week I started bleeding. (Dang leaky trash cans)

While talking to a good friend, I admitted it. (I was going to pretty much ignore it and see if it continued.)

She talked to me and we went through a list of my docs and who I trusted, and I wound up calling my chemo doc. I left a message for a nurse, nurse calls while I'm out, I come home, call the nurse back, she tells me the doc isn't in today and maybe I should call one of my other doctors. (I admit that the only doctor I currently trust is the one I called and that even if it isn't her area of expertise, I'd rather she be my 'go to doc'. She said she'd leave a message for the doctor. I gave her my cell number and told her I'd be doing some running around and it might be easier to contact me that way.)

I went over my mom's to visit because I'd be picking up my daughter in under an hour. I'm barely there when my cell rings, it's the doc. She assures me it's serious and that I need to call the gastro doc and if I'm not comfortable with him or if he offers me no good advice or can't give me an answer, I'm to call her back and she has a doc on call she'll direct me to. And also if it gets worse, I'm to get my butt -lol- immediately to the hospital ER. I assure her I'll call the gastro doc, and she tells me her office will also be calling his office. (I figured when I got home I'd call him, which would be in about an hour and a half.)

I hang up with her, my phone rings (seriously under three minutes later) it's the gastro doc's office, can I come in now? yeah, I make arrangements for my mom to get my daughter and her friend that I drove home and head over to his office. When his office is clear an hour later, he see's me. He brings out my chart, the one with the photographs of the Sigmoidoscopy (yeah, just what I wanted to see) and explains that bleeding is normal for me. The radiation damage is there and will be there. Do I want to do laser surgery? What? huh?

He explains that he usually has patients come in every three to six months with my problem for the laser surgery to remove the problem area. He explains this is now a 'life time' problem for me and I should expect bleeding from time to time and if it gets bad he can do the laser surgery to help. (Oh, awesome.)

And he suggested anal-ease (sounds like an awesome product huh) for the symptoms. (I bought Preparation H, close enough he had told me. Though I never used it. I deal.)

Think (or don't, seriously, you shouldn't.) agitated open sore feeling. (Itching, burning, uncomfortable...pft)

-----------------

Anywho, I'm still dealing with all the side effects, symptoms which are now, I guess, quality of life issues (but hey, I have life so that's good)

I'm still not addressing the inner walls shrinkage issue. (Yeah, I'm trying to figure out why this isn't a top priority with me. But it isn't.) It's just hard to think I need to get over a pain hurdle in an area that is suppose to be all about pleasure before pleasure will be there again. (At least, I hope it will, and I think that's the crux of my problem, I'm not sure it will.)

I'm left thinking, after last week, if radiation damage in the exit area is going to be raw and sore and bleed, what the heck is going to happen in the other area with friction and use? (Naaaa, don't answer that one, or even let yourself think about it too long, the visual hurts.)

And I'm wondering if the gastro doc will approve the colostomy reversal.(If the exit has open sores,what's the chances that having fecal matter there will be a good idea? Considering last time I wound up with abscesses and there wasn't even open sores then, that I know of.)

I can't see me able to live the rest of my life with a colostomy bag. (It now has to be adhered to me by using surgical tape as the psoriasis has gotten so bad underneath it that it doesn't have any actual skin to attach to.)

--------------
I can't help being dragged mentally back to where I am every once in awhile. I use to think that when my kids got old enough there were things I would pick back up and do again. That when they each could drive themselves where and when they wanted and needed to go, that I could 'pick my life back up'. (and I don't mean to suggest that I don't or didn't have a life.) But some things were put on hold to raise my family the way I wanted to.

But anywho, I always thought I'd love to go back to playing softball. And I didn't think being 47 would be too old to do that. (That's when my youngest will be driving herself, or around then.) I figured I'd join an adult league and play again. And I look at myself now and realize all those physical pursuits that I put off with the idea that I could pick them back up later in life, well, they just aren't going to happen now.

I use to watch some of the reality shows (more just catch bits and pieces as my husband watched them) and think, "Hey, I could do that!" Maybe I could, maybe I couldn't, but mentally I had thought I was physical able to tackle most of the challenges they had to face. Not anymore. I look at them and realize where I am in life and it depresses me a bit.

The arthritis has kicked in. (I had bad knees and a shoulder and an ankle) But the arthritis has intensified those, the nerve damage to my hips has not eased, if anything it's gotten a bit worse, not incredible worse, just enough to pretty much let me know it isn't going to reverse itself. (At least, that's my view at this point, who knows, maybe I'll get lucky.)

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I also can't help thinking that I use to believe in karma/what goes around comes around. (I won't bring up religion, I'm still grappling with myself.) But how the heck can I think about karma and the idea of people reap what they sow? What the heck did I do to deserve this? (So a life time of thinking the way I do is under question and I'm not sure what I actually think/believe anymore.) And I realize no body 'deserves' cancer. (So it isn't even a fair question to think in the sense of asking 'why me'.) Why me hasn't even been a question I think I've asked myself because it just leads to the question of why not me, or if not me who..and I wouldn't wish this on anyone else so I'll take what I have and do my best to work with it.

Good thing I'm not raising kids anymore though(I am, but I mean it's a good thing they aren't younger.) I might actually think about raising them more about grabbing what they can while they can and the heck with the consequences.
(But I haven't changed my parenting, that I know of. Because I'm still trying to figure out what I actually believe.)

Sorry, guess the whiner came out tonight.

I am grateful. I know it may not sound like it. But the massive pain is gone, and in all honesty the discomfort I feel now is livable and my quality of life really isn't that bad. (If I could just tackle the sex issue, this probably wouldn't even seem that bad as a whole.)

----------
10/18/2011 (My peers on the site showed some concerns as well as support, and I replied with the below.)

And I am grateful for my life.

And there are quite a few things that I count my blessings on.

That I am here. (When with my bullheadedness about doctors there's a pretty good chance that if a few people hadn't been getting on me about my health, I might not have had the nerve to tell the admitting doctor "Yes, I'll stay if you admit me.")

That I have several really good friends that cared/care enough to ride my back until I do what I should.

That I had/have enough friends to see me through any crisis. (No matter its duration, or what it involves.)

That my family rose to the challenge and didn't give up on me. (And that my husband did the impossible and did dishes and laundry, something I would have sworn he didn't even know how to do.) And finding out afterwards that he had a few really scarey days/weeks when he truly thought I wasn't going to stick around to make the rest of his life miserable. (Like I could ever give that up?!) And I never got that impression from him while I was going through treatments. (It was only afterwards when a few people who he confided in didn't keep their mouths shut around me about it that I found out.)

That my kids turned down events and friends to stay home, even if all they did was stay in their rooms. (I found this out afterwards.)

That although my thighs burn, they continue to work and support me.

That although I can't move my arms the way I use to, they can still hold, support, and hug a growing toddler.(even if they ache afterwards for a bit.)

Though I now have arthritis, the knees were bad to begin with, and the ankle isn't un-supportive of my weight, it just dislikes being turned oddly. (And it hasn't affected my driving ability) the one shoulder would roll out of the joint anyway and having the other now do it, well, it's not like I don't have a clue how to fix it or deal with it.

I can eat again.(Wow, this isn't as high on the list of grateful things as it should be. Seriously, foods important to me!)

I can sit without massive pain. (Something I don't think I will ever take for granted again.) I may not plop down unthinking, but I no longer have to 'think' about sitting. (Or just opt to stand.)

That I have one doctor that I truly trust and who isn't offended or irate that I've made her my go to doc, even if she isn't a general practitioner.

That even if I'm having trouble sleeping at night, when I do finally fall asleep, I sleep well. (If not long.) I don't feel lacking in sleep.

Oddly, I'm actually grateful for the colostomy bag. (The thought of going through what I did and being 'connected' through it all makes me shudder at the thought.) And having it (aside from the stupid Psoriasis and the allergy to adhesives) really isn't that bad. (My dad had once told me, way back when he had diverticulitis and a colostomy bag was on the table for him, that he would rather die than have one. My mom confirmed that he thought this when I was in the hospital and then came home with one.) Me? When the surgeon said he thought it was the best way to approach this, I never once questioned his advice, my dads words went through my mind, but I'm not him. And I wouldn't ever choose death when a choice for life was on the table for the picking.) And I wouldn't willingly stay in intense pain simply because some 'quality of life' might be sacrificed.

That I've been able to pick my life back up, and almost get it back to normal. (Yeah, I still won't carry laundry up or down the basement steps, and yeah, I still need to get on my family about doing that for me. But heck, I can carry my own stuff down there and wash it and they can all go naked if that's the way they prefer it.) ;)

The chemo brain. It could be worse, much worse. Yeah, I've embarrassed myself and wanted to apologize for not thinking something through more before opening my mouth. (But mostly I think that's my own perspective of the events, I might come off a bit blonder than I am at times) I'm hoping I'll see that in myself as I go forward and be able to correct it before I embarrass myself and if not, I can live with embarrassment. (I just hope I don't embarrass my kids too much. And if I do, well, ya know, they could use a bit of down to earth reality from time to time anyway.) lol

I'm relearning to form mental associations so that I don't forget things that are short term related. And I'm not embarrassed to tell people that 'No, I can't give you an answer right this very second, you need to give me a few minutes to fully think it through before I'll give you an answer. And no, I don't think as quickly on some things as I use to." or maybe again, it's my perspective, that I don't trust myself to know all the things that are going to be affected by my answer so I try to take a few extra minutes to try to calendar-ize my days and think through commitments and obligations before adding a new one. (Thinking I'll miss something and have two things that need to be done at the same time and not that I can't multi-task, I can, but nobody can be at two different places at the same time.)

But, anywho, I just wanted to assure you all, I am grateful and I do count my many blessings in life. (And I'm sure there are more that I'm forgetting to state at the moment. Like my love for reading being still high on my list of loved things to do and that it's kept me sane at times.)

I wallow in self pity every once in awhile. Mostly when those around me tend to take me for granted or don't realize I'm still dealing with a lot of stuff and they act like everything is normal and fine and to me, it still isn't. But then again, it's a pretty good thing if those closest to me aren't realizing what I'm still going through. (Then I'm doing a pretty good job of picking life back up and moving forward.) :)

Ann_i_
Posts: 47
Joined: Oct 2011

That brings us up to date with my travels so far.

Although I did contact the "Hope" network and they hooked me up to talk to a woman who had gone through something similar and she gave me a great lead about the dilator. (I'll be looking into that tonight.)

And hearing that a lot I've been through, so had she eased my mind a bit.

I have the next doc appointment November 9th. (To set up for another sigmoidoscopy-spell check-)

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I'm sorry if the last couple seemed more like downers, learning to cope with things that seemed out of my control got me frustrated, until I realized I may not be able to control some of it, but I can still control how I react to it. (Which gives me control back.) :)

Ann_i_
Posts: 47
Joined: Oct 2011

On the humorous side, I kept embarrassing my poor daughter.

As I went back out in public after my treatments ended (I had gone out a bit during treatments, but not a whole lot. At one point I had been under the impression that the chemo made me dangerous to the young and the old, so I thought I was performing a public service. Late when I asked for clarification because I had/have a very very young great niece who I really wanted to spend time with, I was informed that I was fine to be around her. So long as she hadn't recently received certain shots and as long as she didn't come in contact with my body fluids.) Knowledge helps.

Any way, as I was getting back out in public, I seemed to be running into people I hadn't seen in years.

Oh course one of the first things they would mention is, "Wow, you look great! You've lost a lot of weight!" (and of course, one of my first thoughts was, 'I do?', I mean, I wasn't in top form, my energy level just spiked above zero, I thought I looked pale and sickly, apparently I was not seeing myself clearly. lol) and much to the embarrassment of my daughter I never failed to reply with, "Yeah, cancer will do that to a person."

My daughter told me after the first time I said it and the person had suddenly looked uncomfortable that, "Mom, can you maybe phrase that different or just say Thank you?!" I told her, "I'd feel guilty thinking they thought I actually lost the weight from conscious effort when it had not been my intention to lose it."

She said..'oh'
Me: Yeah, it's not the greatest diet plan in the world, but shoot, it needed to have some side benefits, and for me, that's one I'm counting on the plus side.

Another: When I first went for treatments my chemo doc (she's my go to doc, I love her to pieces, seriously, she's so awesome. Rocky start maybe, but she's worth her weight in gold. Or maybe she's worth the weight I lost in gold, cause she's a small woman.) :D

Any way, she told me that due to the chemo and where the radiation would be aimed, that I would lose hair. And that certain hair would probably never return. (Pelvic)

So when talking to friends I informed them that never again would I need to worry about bikini waxes or shaving a sensitive region. Gotta look at the positives and for me, this was/is one of them. (Again, that's another for the Plus side.)
(Now if only the chin hair had been part of it! Can't have everything I suppose.) ;)
Oddly, thinking on it, I think I lost all body hair, minus facial hair and head, though they thinned out a bit.

oh and an embarrassing moment for me:

My mom's dog had puppies, when they were old enough to find homes, one of my son's assistant managers said he would like one for his mom. So we gathered the dog up and took him to his new home to introduce him and get him situated there. While trying to get him to go to the gentleman's mom, the dog tried to burrow up my shoulder, claws digging into my shirt. I was so worried about the dog adjusting and taking to her I didn't pay attention to what the dog was using for 'purchase'. I finally handed the woman the dog and as I turned, my colostomy bag fell out of my shirt and unto the floor.

My son's assistant manager (the gentleman that he is) reached down before I could and picked it up and handed it to me. (Talk about mortified.) I turned, pulled my shirt up slightly (after checking it was clean around the edges) and popped it back on. (Once home I changed it out and cleaned the wafer portion.) But talk about embarrassed. lol

Thank goodness I can't stand to leave anything in it and had thoroughly cleaned it prior to picking up the puppy. (Now, THAT would really have been embarrassing!) lol

AZANNIE
Posts: 371
Joined: Mar 2011

Welcome to the discussion group, but sorry you're here, too. I can totally relate to your comment, "it's been a tight squeeze..." I'm almost four months post treatment. I didn't have any of the risk factors, but have a family history of cancer. One of my coworkers at school joked that it must have been the scratchy school toilet paper...

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

Hi Kim - thanks for sharing your story. Waiting to hear more. Your sense of humor is just fine!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I just wanted to thank you for posting your journal entries here for all of us to read. I enjoyed your sense of humor and I think you put everything in perspective. At the "end" (sorry!), we're all still here, living our lives normally for the most part. I wish you well and hope you'll continue to come here with updates.

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

You gave us what I asked for. What a journey you have had. I found it amazing that you stuck to the physical problems and left what can only be left to the imagination, how hard it must have been for you to cope with all this without insurance. As if cancer isn't stressful enough and you have young kids! Thank you so much for taking time to share your journey with us. And stay with us, please. All the best and God Bless! Sandy

Ann_i_
Posts: 47
Joined: Oct 2011

Thank you all for your welcome and your words of support. They are much appreciated.

As I was going through treatments and with filling in people with the updates to my condition, one thing I kept trying to remember was that the physical things were what I needed to concentrate on. They were things to overcome. They were tangible things that could be seen as goals.

The emotional issues that came, well, those were mine. I owned them and nothing anyone could say would relieve me of what I was feeling. (Though, I honestly thought I hadn't done a great job of hiding them completely.)

I know the saying, "A burden shared, is a burden halved." But to me, the emotional burden I carried, it just didn't sit well with me to share it.

The emotional journey of Cancer is in and of itself a whole different journey than the physical journey. And I believe, it really is one we each have to take on our own. It's personal and it's not something anybody else can fix or heal. It's something we need to take one day at a time and find our own way to heal.

Although, for me, I've never been one to find sharing my emotions easy. I'm a mom, I'm suppose to be the strong one. (Emotionally and physically) Being anything less, drives me nuts.

Though if pushed, and I dump, shoot, watch out because you'll get it all. (I so hate when this happens.) Hmm thinking about it though, (laughing, seriously) I didn't dump the emotional stuff, I dumped the physical stuff. (I cried though, and that helped relieve some of the emotional turmoil.) I don't think I know 'how' to share my emotional struggles. (Except through venting the physical struggles.)

sistermoon
Posts: 12
Joined: Oct 2011

Ann _i_, I'm wiping away tears (of sadness, laughter and joy)as I type. You're initial experience mirrored mine completely - especially the "elimination difficulties". I had so many similar reactions.

My journey is just beginning, and people like you give me the strength to keep going,keep my head up and believe this will have a happy ending. I truly appreciate your stepping out of your comfort zone to share your story.

Ann_i_
Posts: 47
Joined: Oct 2011

Sorry, I know it's been awhile since I posted. I got a bit frustrated and I think I was dealing with depression (and maybe thinking of hosting a pity party for myself.)

I got the stomach bug that was going around just before the holidays (Dec 2011) and lost 20 lbs and a visit to the E.R. to fill my fluids back up. (This 4 days after my chemo doc told me I should maybe try to lose a bit of weight or at the least maintain. I'm pretty sure she hadn't meant my body to take it so literally. lol )

Easier said then done (exercise that is) with a port in my left shoulder and a herniated colostomy and the chemo/muscle damage to my upper thighs and upper arms. (When I asked what I could or couldn't do to achieve this she suggested running, I looked at her and reminded her of the herniated colostomy and that I have two iffy knees - I didn't run prior to cancer, why would I run now? lol she suggested walking. Yeah, I take one turn around wal-mart and look for a place to sit.)

I was so frustrated to feel horrible through the 'food' holidays. (I mean, c'mon, it's food, I am SO into food. Not feeling well enough to eat like I wanted to stunk!!)

But a good thing came out of it, it pushed my pain up a notch and made me go back to my gastro doc and ask for help with the pain. He put me on a pain medication and the first full day I was on it my daughter told me, "welcome back mom", I was confused (this was in February, two months short of a year out of treatment. I thought I'd been handing everything very well. Nope.

Apparently I wasn't quite as 'engaged' in the world around me as I thought I was. I was living in a mental fog just getting by and just trying to get through another day. The pain meds helped me clear the pain and think (somewhat) clearly for the first time in over a year. (Those family members closest to me all commented about having me back and looking so much better.) I still find it odd that nobody told me the fog I was living in and how I was reacting to the world around me at that time. (I think they thought there was no way to help so they kind of ignored it and thought it was my 'new normal'.) :(

Then a bad reaction to the pain meds and when I went for my flexible sig - after a night of pacing the floor trying to mentally get a grip on the pain since I stopped taking the pain pills and now had absolutely no tolerance for the pain I was in - I told the doctor the problem (and the nurse and tech prior to the flex sig and they put a pain med in the IV, I have never felt so relieved in my life as when that pain med kicked in) but anyway the doc put me on a lower pain medication. (Ultram) and I take that twice a day. (He also told me part of the problem is I have diversion colitis since my colon isn't happy I'm not using it. I'm wondering who told it that IT had a say in the first place? ;) )

My flex sig results came back, I'm still cancer free at this time. (No evidence of disease.) My gastro doc wants to wait at least another year for a possible colostomy reversal. (He told me if I went through it he didn't think I'd have any control of my bowels at this point in time.) He said, 'The cancer didn't kill you but the treatments almost did.' So nice of him. The radiation damage is excessive at this point. (He's a bit surprised that it is what it is after almost a year after treatments have ended.)

My chemo doc was next on the list to visit, (and I got a gyn referral from her due to a blood showing vaginal after the flex sig and the gastro doc thinking I had a fistula in the vaginal area.)

And my radiation doc did a thyroid ultrasound. (I now need to go in for a needle insertion to check out something that showed up on the pet scan in JUNE. Not sure why she waited.)

I've had a pelvic ultrasound and a vaginal ultrasound, both came back normal. A mammogram that also came back normal(for me.)

The gyn is going to put me under and take a closer look at what is going on inside to see if she can't find out about the bleeding. (I have a bloody showing about every two weeks, which so far has been four times since that first one after the flex sig.) The gyn said she doesn't see a fistula (during the office exam and not in the ultrasounds) so she doesn't think there is one, but the bleeding needs to be further checked.

I've applied for social security disability (no results on that yet.) I did get some of the bills taken care of by qualifying for charity care with the hospital. (Took two visits with the financial department of the hospital since the social worker in the cancer pavilion dropped the ball and left it all hanging.)

I saw my surgeon (since my chemo doc wants the port out and I finally got it flushed for the first time since treatment ended.) and he said he can do that. (I just need to come up with half his bill prior to the surgery.) I asked him about the hernia and if fixing it was still on the table for when the colostomy would be reversed, he said, "What hernia?" (Gotta love that they read the patient files before coming into the room to see you!!) I lifted my shirt to show him, he starts to me and then see's it and what comes out of his mouth?..."Oh, oh my..." sheesh, thanks doc for making me feel better! grrrrr

He checked it and yeah it's still on for when the colostomy gets reversed, although I may address it sooner as it does stick out and make the colostomy more prominent.

On the brighter side, I saw a new program that is being advertised as I went through the rounds of doctors, a new supervised exercise program for cancer patients. (It was a study that was being done for patients who were within three months of finishing treatments to being up their stamina and energy.) I asked about it and my radiation doctor recommended it and contacted the program and there is a 'doctor referred supervised exercise program' in place for patients at the fitness center across from the hospital.

I got a call from the program and they sent the paperwork to my doctor who filled it in and I joined the program. I joined April 18th (and it runs for 2 months) I've gone 3 times so far and I can already see the improvements. I started with no resistance on the band machines and am slowly adding some. (Not much, it hasn't been long, but I did add some this last time.)

I can not believe how much it hurt to start, dang muscles really aren't use to being used. I'm not pushing too hard, just starting out and building up a little bit but it feels great to be actively trying to regain my strength and stamina. (It has been frustrating not being able - or feeling like I wasn't able - to do anything.) I don't work the trunk muscles specifically (I don't target them) but I do use a cardiovascular machine and am working on my legs. Trying to help alleviate the muscle burn/pain in the upper thighs, lower hips from the chemo.)

It feels great though to be doing something to help myself.

As for the vaginal walls narrowing and shortening, the gyn said there's more room in there then I think and that I should be able to return to intimacy with my husband, but after the vaginal ultrasound, I'm scared to even try. (That hurt going in and coming out.) I know I should be tackling this but to be honest, I'm still so disgusted with it and what needs to be done (not turned off by the tools of the trade per say,- lol - this isn't about the physical, it's all about the emotional) I'm finding it hard to prioritize.

One step at a time I figure. Right now I'm working on stamina/strength/energy. (I'll tackle the other, I know I will. I hate feeling less than I should so I'm sure I won't let it go untackled for much longer. I just need to deal with the emotional aspects and catalog it and file it and then say 'the heck with that stuff' and just do what I do best, set a goal and treat it as a physical thing to fix and just ...do it!)

eihtak
Posts: 809
Joined: Oct 2011

Thanks for sharing your story, my situation is similar in many ways. I am about 1yr post treatment for Stage3 Anal cancer and still have a colostomy that was supposed to be reversed over 6months ago. My doc feels that the radiation and extreme amount of scar tissue has caused me to loose almost all control, I am waiting for tests from my Gastroenterologist. Truthfully, I am kind of ok with it anyhow. If I watch what and when I eat I am able to go about 6hrs with only a large bandage over the stoma. It took some time to learn how to make this work, but is possible. There is a great site ( C3life ) for people with ostomies, and I have sent for several free samples from different manufacturers which may come in handy for you. My last PET was in Feb. of 2012 and I was NED but unfortunately diagnosed with Breast Cancer. Last month I had a double mastectomy, and so again trying to get energy levels back to normal, but otherwise alive and well! Please continue to post, especially if colostomy issues as the majority of people here have not gone that route. ( it usually just depends on exact size and placement of the tumor along with docs preferance ) As far as vaginal issues due to pelvic radiation I try to get the info out to all newly diagnosed...it is often overlooked by docs and is shocking news after the fact. This is a great place full of people with great advice to be shared. As always, all in my prayers.

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