Archive for the ‘pain’ Category

june 18, 2010

June 18, 2010

i hear all went well during surgery yesterday, only 5 hours long.   today is my “quiet” day, no moving except my hands and feet.

they keep asking me about pain, and as long I  stay real still, i’m ok.  but any moving like to sit up and in my mind i say, “ow ow ow ow ow ow!!”

Advertisements

drain tubes

May 23, 2010

I have 14 days worth of “drain tube” records documents at my bedside.  Filled my prescriptions for pain medications, an antibiotic, and post surgery vitamins.  The days I have been waiting for are finally drawing near, and I am slightly unsettled, and getting anxious to be moving forward.

 

For the last couple of weeks in addition to being tired, everything also aches.  These aches seem to come from deep within my bones.  Side effect of Arimidex?  maybe Zometa?  I think both are possible and neither can be positively confirmed.  Every day I compel my body to get up and move.  I just put one foot in front of the other and then repeat.  If I keep doing that eventually I’ll feel like moving.  Some days that trick works and other days, well, I just keep putting one foot in front of the other.  

real “fake” boob and my fancy bra

November 20, 2009

OK, I’m going to stop bitching about Susan Love for just a second here to tell you about just how darn exciting it was last night to put on my fancy prosthetic-holding bra, with my real (fake) “weighted” boob tucked neatly in her pocket.  It is the first time in about a month that I have been able to put on a “real” bra due to the pain and burned skin from radiation.

Cool-Paula and Bill had the premier opening of their new gallery, River House Arts with:

Rediscovering a Middle-American Abstract Expressionist  Clay Walker (1924 – 20008)    http://www.river-house-arts.com/

and I was lucky enough to go, and lucky enough to get all dressed up with two real looking boobs.  The boobs under my shirt, I mean.  It was great fun, and I felt good, and the remaining discomfort from radiation was mitigated by medication, so I was able to ignore it for a night. 

Simple pleasure, yes, but significant for me.

five days post radiation

November 12, 2009

So, who were the fools who told me radiation is easier than chemo?  That has not been my experience. 

Unless I have some kind of selective memory or something….radiation has definitely been much more difficult than chemo for me.  Having more than a square foot of your chest seared to a crisp is a constant,  “24/7”  painful reminder that “all is not well”. 

Having studied Anatomy and Physiology in college, I knew that human skin is an amazing organ with great flexibility, or at least I thought I knew what that meant.  Like most things, the addition of experience to the knowledge base adds a depth of understanding that cannot be underestimated.  I now know that something as simple as lifting my chin to look up, really does move all the other skin on my chest (and now causes discomfort).  Something as simple as walking, needs to be reconsidered.  I have learned to do what I think of as the “beauty queen glide” where my feet don’t actually HIT the floor, but rather gently connect with the floor in a smooth manner which reduces impact, and thus the jarring to the skin on the lower edge of the burnt field.  And laughing…I never knew just how much laughing moves the skin on your torso….  All the normal things in life, getting a gallon of milk out of the fridge, setting your left elbow up on the window ledge of the car as you are driving, putting your arms back to get into your coat….you can do all of these things because the skin on your body is normally quite pliable and elastic.  It stretches to accomodate the normal movements of life.  Except when you are burned.

And today, according to Dr. R, I “look pretty good”.  I’m glad it all looks good to him, because it feels awful to me.  Before you tell me to take more medication, know that I am on 600 mg Motrin during the day….can’t do much more than that and still be able to drive and function.  I have finally caved in to the bigger/better/stronger pain medication as soon as I get home and again before bedtime…..thanks again to Dr. R for insisting that I fill the prescription.

Boy, I can’t wait for my skin to get over the radiation.  Maybe by Christmas I’ll be able to move again without pain.

3 am saturday

November 7, 2009

Well, yesterday, the 28th and final day of radiation was no fun thing.   I knew that getting into “the postion” would be painful, and of course it was.  I’m not usually a crybaby, but involuntary tears rolled down my cheeks as soon as my radiators scurried out of the big room with thick walls.  Thank God for the Dali Lama!  The chanting CD  became incredibly important in this little radiation adventure.  Something about it enabled me to pretty quickly drop off the edge of conscious thought and into some kind of “zone” that I can’t really explain very well.  All I know, is that as soon as I surrender completely to the chanting vibrations, the clicking and hum of the great big radiation machine disappears completely.  It’s as if everything disappears and I drop into some light level of unconsciousness……  That’s a great gift when you get radiated for 20 minutes every day.

Except that “radiated everyday” is in my past now.  Something about the physical pain of this week combined with the emotions of knowing that daily physical treatment  came to an end wrapped me in a big insecurity blanket and made me, normally the level-headed one, feel completely emotionally raw and exposed.  It was a wierd mix of happiness and fear.  Fear in the lighter sense for my physical self.  My chest is supremely uncomfortable.  My fabulous oncology nurse called me back at the last minute to put some special treatment dressings on my burns, and now, 10 hours later, I am kind of  “OK”.  My great radiation oncologist, Dr. Rubin, encouraged me to take the pain meds he prescribed, saying, “In the US we don’t medicate cancer patients enough”.  So right now, sitting up in the middle of the night in my bed, I feel not great, but OK, and I’ll take that as a gift.

Emotionally, I don’t know where I am.  I feel insecure.  Dr. R told me on wednesday that I have a great prognosis with better than 80% chance of survival.  Just that 80% doesn’t sound good enough to me.  And I am fearful about my follow-up care.  I don’t know why.  I still have a bunch of medical appointments on my planner for the rest of November and a few into December, but at this time, I’m still not clear about exactly how we manage the next year……..  And all the while I struggle with the pain and the insecurities, I know that I am lucky to be doing “so well” and feel a little guilty being so wrapped up in this self centered examination of the details of cancer.

As awful as my radiation experience was, it was made bearable by the professional people at Flower Hospital who cared for me and about me.  From the moment I walk through the door, the medical receptionists know my name and check me in like a VIP.  I can’t say enough good things about my Radiation Technicians on C machine.  Thanks for allowing me the time to cry on your shoulder, and for coming in on your day off (with your special surprise!!) to see me on my last day.  Both were moments I won’t forget.  I just love the onco-nurses, especially Pat.  Thanks for listening to me.  And quirky Dr. R……I do have great respect and admiration for his manner and knowledge.  Lucky me to have experienced all of these compassionate and intelligent people.

four more

November 3, 2009

As of today, November third, I have four more radiation treatments.  I would say only four more, but honestly, I don’t know how I’m going to make it.  I feel like crying at the drop of a hat.  Any movement is so uncomfortable, but if I sit perfectly still, my skin stings and feels like it is shrinking into the size of a postage stamp.  It is challenging to think of clothes to wear to work that won’t touch the big radiation field on my left chest.  Hell, it is challenging to just put clothes on, to move my arm in that backwards kind of motion we all take for granted when we put on a shirt or jacket…..that hurts and pulls on the burned skin, and it feels like it is going to rip.  Of course, my radiators have assured me, it is not going to rip. 

Luckily, everyone around me has been so kind.   My principal and supervisor have been just wonderful and supportive.  I am so grateful for their empathy.  Dr. R, the radiators, and nurses at Flower have also been sensitive and responsive to my complaints.  Got a ‘script for prilosic for the reflux problem yesterday.  We’ll see how that works. 

Maybe I am more sensitive than the average person to radiation.  There is another woman with BC and gets radiated at the same time as me, she has no burns yet, and  has had 20 rads treatments.  I think this stage is just such a mental game.  It is a moment by moment challenge to rise mentally above the pain and exist on a separate plain.

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.  :^(

 

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.

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.

 

chemo crud creeping in again

August 30, 2009

Yuk.  Once again.  Fingers ache, vertebrae seem stunned, feet and hands itch, horrible metal mouth, searing heartburn, all complements of chemotherapy.  In addition, just as my Oncologist predicted back in June, I have a new side effect: hot flashes….except they are not timed to infusions, I think they are here to stay.  Apparently when you are my age, chemotherapy throws you into menopause whether your body is ready or not.  I guess I am thankful that I can at least semi-function for an hour or so at a time….but I really have to think about what it is I intend to do.  I sure do hope this is the last time I ever have to endure chemo, but of course, you know I think about all those stories I have heard…..from the survivors themselves, of relapses, and more treatments.

Can’t write anymore right now.  Each time I begin a new paragraph I sound too pathetic.