Archive for October, 2009

Is radiation painful?

October 31, 2009

It’s late on Halloween night.   My kids had a good time, but I didn’t get to go out and trick or treat with them….my radiation area is uncomfortable with any walking that is much more than a leisurely stroll.  What a disappointment. 

I’ve had a few friends ask me if radiation is painful.  Well, I meditate during treatment, so no pain at all then.  When the technicians help me sit up, that is fairly UNcomfortable now.  It’s like realizing you have been out in the sun WAAAYYY TOO LONG.  My skin just feels super tight against my body, so all movement makes me so aware of the square-foot-plus-some radiation field, which by the way, feels like elephant skin.  Just even walking with any kind of force in my step creates an instant awareness of how each drop of my foot jars the skin on chest.  Reaching for anything on a high shelf, turning my head to check traffic behind me, carrying the laundry downstairs…..all things that move the skin on my chest, and creates discomfort.  And the worst part is the radiation field in my armpit.  That really is annoying physically and mentally, too, because it is a 24/7 discomfort.  When I wake up in the middle of the night from hot flashes, now I have to find a position that doesn’t hurt to get back to sleep….radiation field on the left side, stupid expander implant on the right…..my chest feels like an alien entity.  (I did briefly think of just going topless for a Halloween costume….that would be scary enough……alas, too cold in NW Ohio even if half of my chest has no operating nerve endings….)  I’m walking around with “the incredible hulk” posture….you know, arms slightly bowed out from my body, due to the burn in the armpit and the underarm area.  I am so tired of this. 

And I’m tired of being tired.  The fatigue is really wearing thin now.  When I began this radiation part of the cancer trip, I heard stories of people who work full-time through their entire radiation time.  I thought, “Great!  That will be me!  I can do this, because I believe I can, I have the will to do it, and I want to go back to work!”    So, it is very very difficult for me to admit that I am not strong enough to do this.  I have never said that before about anything, and it makes me scared and upset and disappointed.  I think I will only work part-time next week, my last week of radiation.  :^(

 

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three for thursday

October 29, 2009

Have three appointments today.  Doctor, Victory Center, Radiators.

I am really looking forward to seeing Veronica at The Victory Center…..her speciality is called Healing Touch, and she is wonderful.  It has been such a shame that since I have gone back to work full time (kind of, anyways) that I don’t have time to receive services at TVCThis is the stuff, the healing energy that makes all the other medical therapies bearable.

And speaking of other medical therapies…I am thrilled to say that two days post zometa, I have no adverse efffects.  Mainly, no bone pain.  I was quite concerned about that, given the blog reports a quick search on wordpress provided.

And the radiation?  I try to make it the best experience possible, I have GREAT CD’s to listen to (thanks to superfriend-Kathy) I take advantage of the 20 minutes on the table to meditate, I have a pleasant relationship with everyone I encounter…I pretend like all the nurses are my friends, and I’m on a social visit, but in reality, it really sucks.  I have nothing good to say about it, other than the killin’ cancer part, of course.  Good thing I like my radiators, Donna and Natalie.  Otherwise it would be really intolerable.  Actually, nearly every nurse at Hickman has been wonderful.  It’s kinda’ like the old TV show “Cheers”…….it’s a place where everybody knows your name.  Of course, I’d much rather be at a bar where everybody knows my name, but that’s not my place in the universe right now.

Zometa

October 27, 2009

Finally.  Today I finally received my first infusion of the bisphosphonate clinical trial drug, Zometa.  If all goes well, Zo and I are going to be friends for three years.  Once a month, I’ll go get hooked up to an IV line at Flower Hospital, to further the study investigating the effects of Zoledronic Acid for breast cancer patients.  According to drugs.com, “Zoledronic acid inhibits the release of calcium from bones.  Zometa is used to treat high blood levels of calcium caused by cancer (hypercalcemia of malignancy). Zometa also treats multiple myeloma (a type of bone marrow cancer) or bone cancer that has spread from elsewhere in the body.”  All nice thoughts (especially since my mom died of multiple myeloma).

Actually I was really anxious about this.  Like, way more anxious than was warrented…I think.  Unfortunately, this form of the drug has one big drawback, “Some people using medicines similar to Zometa have developed bone loss in the jaw, also called osteonecrosis of the jaw. Symptoms of this condition may include jaw pain, swelling, numbness, loose teeth, gum infection, or slow healing after injury or surgery involving the gums. You may be more likely to develop osteonecrosis of the jaw if you have cancer or have been treated with chemotherapy, radiation……”  –Obviously an infusion won’t begin jaw death, but apparently it was worrisome enough for my psyche to mess with my head for today. 

more later, I just dozed off at the keyboard………….. zzzzzzzzzzzzzzzzzz ………

 

big day tomorrow

October 26, 2009

Short post, I’m beat. 

Tomorrow is a big day………..I’ll find myself in yet another chemo suite, but this time to receive an infusion of Zometa the drug that I was randomized to for the Bisphosphonates trial.  This is the drug that is supposed to make my bones stronger…the idea is that IF my cancer is still lurking somewhere and has ideas of metastizing to another part of my body a little less expendable than my breasts (like my bones) this will reduce the likelihood of a recurrence.  

I had struggled with the decision to sign on to this study for weeks and weeks, and once I made my decision last August, it was  temporarily closed.  The study just opened again last week, and this Thursday was the last date I could get in.  So last Friday I completed more blood work, they decided to accept my dental work completed in September, and today more blood work.

Tomorrow, I go to the chemo area of Hickman Cancer Center at Flower Hospital, receive a relatively short infusion, supposed to be 15 minutes.  I’d be lying if I told you I wasn’t nervous.  My last experiences with infusions were lengthy and kind of dramatic with side effects.  But, this is a completely different kind of drug.  (I’m thinkin’……) 

Tried to get a half day sub, but no good ones were left, so I’ll just do another marathon.  Leave the house at 6:00 to 6:30, work until 1:50, get a friend to cover the last class, and fly to Flower for the 2:30 infusion.  Hopehopehope it doesn’t take too long because I have an appointment with the radiators at 3:30 to sear my skin some more. 

Who ever said radiation is easier than chemo lied.

fifty and fatigued

October 25, 2009

too pooped to post.  overwhelmed with obligations.  All I really want to do is write, but I am getting freaked out by what’s NOT getting done that should be done (at work.)  I’ll write something after a visit with the unitarians.

I’ll say it again, radiation is NOT easier than chemotherapy.  not for me anyways.

more tired

October 21, 2009

So today I got to see Dr. R, Leader of the Radiators.  Did our usual, visit for a bit, then  business for a bit.  “Business” is his short list of “boring” questions which I mostly answer right, and today we ended with the skin issue.  Each time I get off the slab in the big white room of “machine C” I am noticeably a bit more….um……only one way to say it………burned.  Damn.  This is just sucking the life out of me by 12 square inches of what used to be my chest, now a sunken, scarred, wasteland.  (Remind me again why I am doing this.)  Now I noticed that it hurts to actually turn around and look behind me when backing up in my car.  And a bra…oh forget it.  Normally I would not care a bit, BUT  for the fact that I teach Junior High School.  It is kind of a job requirement.  If you want anyone to actually listen to anything you say, you need to have some semblance to normalcy….and that means a balanced frontside.  Tried putting the “puff” in a shelf bra camisole the last few days, but now, even that is UNcomfortable.  My lovely WalMart lingerie is now obsolete.  Like REALLY.  I have no idea what I am going to do tomorrow for a wardrobe in flux.

So Dr. R looked at my chest and provided me with a product that he kept emphasizing is French and called Biofine which is supposed to help the radiation burn.  Well, it’s been a few hours and so far…..no pain relief.  Still really uncomfortable.  Maybe it isn’t supposed to make you feel better.  I guess this is the payoff I get for leading a pain free life up to this point in time…….a little radiation and I am consumed by the discomfort.  That is when I am not consumed by the fatigue.  I am so sick of being so tired.  Have never experienced this in my life.  At least during the summer ‘o chemo, I had good days mixed in with the bad.  This is just one big long fatigue festival…………and it is really wearing me thin.

Bisphosphonates Newsflash

After the hospital and before complete exhaustion I got  a call from Nurse C, Clinical Study Recruiter.  I’d just been randomized!  Did I want to know which arm I received???  Well, since both have significant drawbacks I thought it didn’t matter much…..until I was told I received the IV method of delivery of the meds.  Needles don’t bother me, but I am curious how long it will take to have this infusion every month.  Will I need to take a day off each time?  Geez, I hope not.  Forgot to ask that question.  Sure hope that nasty ‘ol osteonecrosis of the jaw doesn’t enter my reality (the most severe side effect).  Yuck.  Gee maybe it does matter to me which arm of the study I receive.  Don’t hesitate to remind me that I am doing this to (potentially) prevent a metastasis of cancer to the bones….which NP Joan from U of M reminded me is far more life threatening than jawbone problems.  So, it is just another learning opportunity for me. 

Good News

Things I am thankful for:

  • colleagues who set warm coffecake on my desk before I get to work
  • and colleagues who bring me yummy lunch
  • old friends who leave sweet little notes on my car
  • great funny emails, sincere emails, “love you” emails
  • Dali Lama chanting CD that fits really well with the hum of radiation (no, really!  Even the radiators like it!)
  • Cookbooks for a cancer girl
  • a boss who cares
  • the delivery of red wine, “because it is supposed to help with radiation burn” (maybe I’m not drinking enough, I hadn’t thought of that!)
  • and the cards.  Thank you for the many cards.  Really.

 

tired+sick+guilt

October 19, 2009

So I really hate being this cautious.  I have a cold.  Really, I think it is just a plain old common cold.   Runny nose, sneezing and tired.  No big deal, only it kind of is when your immunity is down and you are already tired from killin’ cancer cells with radiation.

So I thought it a good idea to take off of work today so I could rest up….only I am running out of sick days kind of rapidly here, I really resent having to use sick days for run-of-the-mill sickness, I want to save them for the big-damn-deal kind of sick days like when I need to see the Cancerdoc’s.   But, none of that really matters I guess, it stopped being about “what I wanted” a looong time ago.  Really, I am grateful that I even HAVE any sick days……….

Besides, I need to send energy to my new dilemma.  My child care provider informed me last Friday that this is the last week she can watch the boy’s after school.  Hmmnn, the reason given sounds fishy, but that doesn’t change the fact that now I need to find a new child care solution in addition to trying to work full-time (not being very successful there) grade papers in a timely manner( only moderately successful) and posting those grades in an equally timely fashion (well, half of the grades are posted).  Of course, I am supposed to be exercising daily to mitigate the negative effects of radiation (yea, right, barely meeting this committment).  Feeling like a failure on so many accounts right now.

If I could just feel like I am doing one or two things well I’d be satisfied.  But I’m not there today.

Gotta go enter grades now before I add guilt to my already overloaded plate.

almost lost my boob tonight

October 15, 2009

OK–It was bad enough that I found myself in walmart tonight, but I nearly lost my new boob. 

Let me explain.  I mean about the walmart thing.  So, number one son needs a new pair of shoes for his uniform for League Cadets (the official Navy group for grade school boys and girls.  really, I’m not kidding…..) and the only place you can get them is at the w-place.  I have a standing vow to only enter the megamart as a store of veryveryvery last resort. 

I picked the kids up from school after 4:30 and we went straight to W.  Since I was sooo exhausted from work (left the house this morning at 6:45) and radiation, we proceeded to pick up a few other things desperately needed at our house….including a camisole for my poor little radiation burned chest.   Finding I can’t wear the industrial bra and super expensive prosthesis anymore…too heavy, and literally, rubs me the wrong way.   Since I finally received my “fluff” or “puff” or whatever the hell it is called from the “tlc” catalogue, I have been trying to figure out how to wear the fluffy fake boob.  I know, you would think that would be an easy thing to get done, but it is more complex than you might think…..

Anyways, tried on several camisoles, each one more annoying, almost ready to give up in frustration and disgust at the “new me” and my sartorial challenges, but the last cami was suitable enough to buy.  Not great mind you, but acceptable.  Of course the boys were fighting outside the dressing room, and I’m thinking, “This is what my life has come to???”  Buying cheap foreign made undergarments at Walmart with my kids fighting outside the dressing room???”  Christ, always thought I would at least rate department store lingerie…..sigh………….

Anyways, decide to buy it, and in a hurry left the dressing room and shoved the “puff/fluff” in my purse.  Realised I need to get hand sanitizer for school (LOTS of snot flying around there) no idea where it was, so I dropped the boys in the Lego aisle to do some wishful thinking while I hunted down the sanitary goo.  On the way to try to find it I walked by a shirt I just decided I must have for the big friggin’ pink day thing tomorrow………..grabbed a M and a L and whisked back to the dressing room thinking to myself, “whoa…..now I’m…..buying…….clothes made in China…to benefit the walton’s??”  As I turned the corner to jump feverishly back into the dressing room, there are two “associates” with my boob discussing whether or not it is a shoulder padding for something or…..what?  . Dang, I just paid $16.00 for that bit of fluff and I nearly lost it the very first ime I wore it?  Now, this is like an ice cream sundae full of pathetic. 

So what would you do if an associate at walmart was holding your boob?  I just said something like, “Oh, for gods sake, that’s my boob.  See I lost my boobs and now I can’t wear my real fake boobs, so I just got some fluffy fake boobs, and I can’t believe…blahblahblah…..”  By the time I got out of the dressing room there was a gaggle of associates at the dressing room entrance……I imagined to see the boob, but maybe they were just working…..

pathetic whine

October 14, 2009

Going back to work full-time is going to be more challenging than I expected.  I am so tired, hit the snooze button, what? five, maybe six times this morning??  Thought I’d skip the shower to save time, and could only stand in the bathroom unable to think of what to do next…what do I usually do after I shower?…couldn’t think of it, so I just took a shower.  Good thing too, because apparently I needed some time to feel sorry for myself, and that’s the best place to do it.  Cry in all that nakedness.

rectangle ‘o red

October 13, 2009

Eleven days of radiation and I can definitively report the “tradeoff” for having such a good time in the radiation suite.  I may not have the bone pain, the body aches, the mental fogginess and all the other unsavory side effects that lovely chemotherapy provides, but what I DO have quite distinctly now is what I affectionately call my rectangle ‘o redAs of now, it is most visible in the shower when warm water hits my skin, but it is definately a rectangle.  the bottom short side of the rectangle traverses my lower left rib, and follows up my side midline.  Can’t tell much about the long side on the middle of my chest because of “scarface” and ribs showing and all the ugly stuff already there. 

sigh………..used to be such a cute little chest.

Yea, I know we are killin’ cancer here, and it really is a kind of assault on your own body.  Guess I am glad that my “radiators” (technicians N. and D.) are lining me up so well  that I can see the lines of demarkation.  But still.  I’m having kind of a hard time with how it is ruining my skin.