The Simulation (what to expect)

"Simulation" is the process before external radiation therapy where you are scanned and aligned about a week prior to treatment.  The scan taken will be looked at with any other internal imaging you've had done to get a complete picture of where everything is inside you.

Notes:

For certain female cancers in the pelvis, you might be asked to not have a completely empty bladder.  A fuller bladder may move your intestines slightly so less radiation touches them.  Less radiation equals less symptoms.  Don't hold it in if you really have to go, though.  Just do what you can for the simulation and subsequent days of treatment.

Wearing loose-fitting clothing will be to your benefit with certain cancers.  I, for instance, had to have my shirt up over my stomach and my pants/underwear down to mid-thigh.

Unless they adjust you, stay as still as you can on the table once fairly comfortable.
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1.  You will go into an exam room (or other private space) and talk to the radiology nurse.  He/they/she will tell you what to expect, ask if you have questions, etc.  You might get your picture taken holding a board with your information on it for records/identity reasons.

2.  You will go into a room with a table and type of scanner similar to a CT machine.

3.  You will need to get on the table and lie down.  The clothing you wear might be adjusted before you get on, or after.  (Since I'm disabled and there's a mechanical lift involved, mine was done after.)

4.  They'll adjust you, putting pillows under your knees, head, etc.  They will try to get you straight.  They might give you a rubber ring to hold with both hands lying on your chest so your arms aren't in awkward places (I had one).  Depending on what part of you is bare, they may give you a sheet for warmth or modesty.

5.  They run the table through the machine.  There is a whirring sound, like a washing machine and you might have to close your eyes because of the red laser guide.  Unlike a CT scan, you do NOT have to hold your breath and there is NO injection!  No moving, though.

6.  You might have to be adjusted again, depending on what they see.

7.  They make marks on your skin with a marker and might put tape over them once your alignment is perfect.  After they're certain they got the marks right, they MIGHT wipe off the marks and tattoo you.  The tattoos are just TINY DOTS.  It feels like a needle poke, then done.  As an example, I got one on each hip and one on my pubic mound.

8.  They will take photographs of your position on the table to assist them with other times you're there.  Your nudity (if any) will probably not be in the pictures.  They just want to know where they have you lying.

9.  When it's over (if you're lucky) they will give you a treatment schedule before you even leave the building.  Your treatments will start about a week from the simulation.  They will, if possible, be at the same time each day.

10.  Go home and relax!

Weighing being "out there"

The name of this blogging game is anonymity.  I've told people I'm closest to I have cancer.  People working at my transportation service also know because they take me to appointments at cancer centers.  There are even a couple of random people who know.

Anonymity isn't always the best way to go about things.  I sometimes wonder if I should just reveal it to EVERYONE.  Seriously.  Put it on every social media account, every blog or website that's mine.

I've always felt announcing something like cancer to the world would be selfish on my part.  I'd worry people who wouldn't have had to worry.  Some people who I would want to take notice... wouldn't.  I'd be bombarded by messages from people who never, ever message me.  People would think I'm seeking attention.  Some people I know will make my diagnosis about them and their feelings... without being particularly close to me.

There are positives to telling people, though.  I wouldn't have a secret.  There'll be less worry about people who I haven't told finding out and someone I did tell betraying my confidence.  I'll have a legitimate reason to pull away from other people's drama and problems to take care of myself... I'm one of those people who shoulders everyone's problems and can't say "no".

It makes me uncomfortable to be "out there" with my diagnosis.  When some people find out about my cancer, they're going to be angry that they weren't told.  I'm uncertain if there is a "right" answer.

Do you have a bucket list?

I'm revising a bucket list.  Cheating in its composition, I guess.  One of the accomplishments is "live to be 85 or older".  It's a good goal.  I realize I can't control how long I live, but most items on my list require things I don't have... like money.

I do want some things that are quite possible.  I want to build a snowman (no references to a certain movie, please).  I want to gain confidence.  I want to go bowling with my sister and husband next year.  I want to learn another language, an instrument, or a craft and do it with a fair degree of skill.

Of course, there are places I'd love to see.  I never know what is accessible, though.  I sometimes fear even desiring to visit a place that's not wheelchair-friendly, but I don't have money to even leave my town, much less gallivant around the globe.  I put on a few destinations, regardless.

I want to incorporate what Mr. Davicob wants, too.  It would be great to have a few "couple dreams" that aren't just "don't die" and "stay married".

My bucket list isn't a new development, I've had one in multiple forms for years.  But, it doesn't hurt to keep an eye on the future.  I need a reminder of everything that there is left to do... and I have a terrific shot of getting to see it.

What's on your bucket list?

The other surgeon and the stage

While I saw Dr. Marvelous, I also saw a surgeon for a second opinion.  She was kind and straightforward, but scared me a bit.

She told me why she believes the other surgeon wouldn't operate.  Cervical cancer is harder to deal with and, even though I have Uterine Cancer, the tumor was still on the cervix and parameters are more difficult to define.  Also, I would have needed radiation therapy, regardless... so, maybe that's why.

She asked me why I waited so long to begin treatment.  I told her things just kept cropping up.  She said it concerns her, considering the mass was found in April.  It worries me, too.  But, I had to wait six weeks for a few minutes with the first surgeon.  The doctor who removed my mass had to consult with colleagues beforehand because I'm a complex case.  I didn't stop at any point, everyone else has to confer, refer, plan... it takes a while... I guess.  Most of the momentum began just last month.  Now, Dr. R. and Dr. Marvelous have to coordinate treatment and call me; I'm waiting again through no fault of my own.

She uttered the words, "if treatment works" which really bothered my husband because he's never thought it wouldn't.  I've told him nothing is guaranteed, but all the doctors tell me I have a lot of positive factors on my side.

She also said I'm possibly at stage three.  Now, I thought stage two, but never seriously thought three.  I've spent a couple days looking at the likelihood of getting out of this alive.  Higher stage, but lower grade.  Complex case, but young.  I don't know.  Death has entered my thoughts as an uninvited guest and I'm more afraid.

Dr. Marvelous has a plan

My body still aches from Monday.  The round-trip was six hours.  The appointment was over two hours long with a half-hour break between one set of specialists and the next. I screamed and sobbed on my bed when I got home.

Dr. Marvelous wants to do my internal as an in-patient procedure.  I'd receive multiple doses of internal radiation over a few days, staying in the hospital on bed rest.  She doesn't want me put under anesthesia for multiple weeks or travelling that much after the external.

My treatment would be done by Thanksgiving.  Mr. Davicob wouldn't have to limit contact with me and could stay with me in the hospital.  I'm doing this.

Dr. Marvelous will coordinate with Dr. R and my radiation will begin soon.  I'm afraid, but it's more than time.

My self-care ideas

While receiving treatment, I'm going to do what I can to not catch a virus and ease my chronic pain.  The external radiation will take place about an hour from home five days a week, and the internal will take place two-or-three hours away, depending.
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I've asked my Nurse Practitioner for pain medication and the masks people wear in public to limit exposure to germs.

I'm going to double my vitamin C intake during treatment.

I'm going to try to make my wheelchair a bit more comfortable and have a ritual I do each day when I get home.  The ritual, so far, includes my loose-fitting pajamas.

I have a very soft, plush turtle my sister gave me to act as a "Radiation Buddy".  I know I'm in my thirties, but anything that comforts me in some way is welcome.  Maybe it will help me remember everyone who's cheering for me when they can't be there.
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I'll probably add more to this, but it's a start.
Do you have anything special you do to keep healthy, calm, or comfortable during treatment?

I detest my body (complaining post)

My body prevents me from doing too much.  I get ill and tired too fast, too easy.  I made it to the Labor Day gathering yesterday sans Mr. Davicob (he was exhausted).  I stayed about five hours.  My body ached with such ferocity, I squirmed.  I slept over nine hours last night and I'm still tired.  My cold doesn't seem to be curtailing.  I hurt today in a way that isn't illness... just overdoing things.

Friday, Mr. Davicob and I are still going on our date.  This might be our last chance for a while.

I have correspondence (five letters) to write and send via snail mail.  I have a questionnaire from the office of Dr. Marvelous to complete.  I have a brochure to edit for an acquaintance (the only way I could say "no" is to tell her about the cancer).  I have other "office" work to do.

Monday, I go see Dr. Marvelous a good distance away from my home.  Eight hours in the wheelchair, conservatively.

Thursday or Friday of next week, my sister and I are having lunch with the acquaintance who has the brochure.  She's a lovely woman and a lot of fun and I want to do it... but, pain and exhaustion.  But... doing it.

My brothers want to see a movie at a theater.  They're close siblings.  They should go together.  But, my toddler nephew and mom need assistance (they all live together), so it's hard to plan things like that.  I want Mr. Davicob and I to go to my family's for a few hours so no one has to worry about anything.  I don't know if I can schedule anything else.  Everything is already too much.  I probably won't go.

I'm so frustrated by my limitations right now, cursing this body for its betrayal and obstinacy.  It constantly thwarts me.  I'm having a difficult time maintaining a level mood.  I don't need this, now.  Who does?

I'll feel better tomorrow.  But, I feel like a "do-nothing" failure tonight.  Just have to go through it.  One breath at a time.

Dr. Marvelous and getting sick

Dr. Marvelous, Ultra Cancer Specialist, is an almost four-hour drive south of here.  I have an appointment with her on the eleventh.  At the exact same time, I will be meeting another oncologist, as well.

They're going to test my slides... again.  This will be the third time the test has been done.  They also want a copy of my scan images because all they'd be able to go on are the written reports.  Anything that keeps me from another MRI gets my approval.

Dr. Marvelous has access to technology the others don't.  She could make a huge difference when it comes time to have internal radiation because of delivery methods.
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Each time I go through a new network, they don't want to touch me unless I know the secret password.  It's "I have insurance".  I don't know what I'd do if I didn't.  Cancer is so difficult without worrying about payment. I've said this before.  I'll say it, again.
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I'm sick.  I think it's just a cold (there's a nasty one going around).  When I go out a lot and/or am quite stressed, I get ill.  If I don't take better care of myself, I could easily end up in the hospital.  Trouble is, there's only so much I can do... especially now.

I don't want to cancel the couple family/leisure events scheduled.  I probably won't see my mom after Monday until Thanksgiving, and my baby brother heads back to college that very night.  Mr. Davicob and I won't get a proper date after Friday until I-can't-even-guess-when.  I will just try to rest more in-between.