Archive for the ‘Radiation’ Category

2:30 am + writing = anxiety (again)

December 8, 2009

I guess it is in anticipation of a visit to my plastic surgeon on Wednesday that has me up and writing again at this hour.  Well, that and the crazy hot flashes. But I have been increasingly concerned about what Dr. Barone will recommend for reconstruction options for the cancer-girl side of my chest.

What I want him to say: Sure, we can move skin from below the navel, place an expander implant under the tissue, and then later exchange it out for the big-girl “gummy bear” Cadillac variety silicone implants.

What I think he’ll say: Unfortunately,  radiation has damaged the blood supply to your skin at a microscopic level which results in a significantly greater risk of complications following surgery. These risks include infection, delayed healing, wound breakdown, and fat necrosis, as well as implant related problems such as extrusion and capsular contracture.*   The best option would be for a tram flap reconstruction on the left side followed by an implant replacement on the right side.

Thats what I think he’ll say.  And I feel ever so…. whats the word?  selfish?  vain?  ungrateful?  some combination of the three perhaps…. for being obsessed with the thoughts of how I want this done.

Never mind the fact that I know so little……but, I would really really like to have two breasts made out of the same stuff.  And the “stuffing” I’d like is the “gummi bear” implants.  Sorry Barone, you did a good job selling me on this way back last Spring, and now I want ’em.  Just don’t think you’re gonna give  ’em to me.

Stay tuned.  More information later. Right now I’ve cooled down and I’m going to try to sleep.  again.  5:00 alarm comes awfully early.

*paraphrased from breastreconstruction.org/

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so maybe I lie just a little

December 6, 2009

Like when people ask me how I am.  I try to very cheerily reply, “Just fine!”  when really I am so tired I can hardly believe it.  How can this be?  It has been a month since my last radiation.  Three months since my last chemotherapy and I’m still tired?  I’m doing the bare minimum at work, although I did, finally last week manage to make it through the entire week.  The first pay period since March of last year that I did not have at least a couple of sick days logged on.  I would have taken a “rest day” except that I am dangerously low on available sick days, and I am so concerned that I might actually get sick…you know….with something other than cancer, and need to use those sick days.  I hate to just waste them on something like resting now.

Falling asleep at the laptop.  More later.

Arimidex it is.

November 23, 2009

On November 19th, I received the following email:

Hi Kay-Lynne,

Your estradiol (estrogen) level was less than 10.  You can start the arimidex and get your labs repeated in two weeks as we planned.

Joan

And with that simple sweet message from my Nurse Practitioner, I was officially informed that I am probably in menopause (compliments of chemotherapy) and therefore in line to receive the slightly more effective hormone blocking drug, arimidex.  This is the most effective intervention in my entire cancer fightin’ battle plan (other than that mastectomy thing) and here we are eight and a half months after diagnosis, finally getting around to it.  Seems kind of backwards, to save the best stuff for last, but for a bunch of complex reasons I don’t have the energy to discuss, it’s just the accepted protocol (for my kind of cancer)…..  Surgery first, next chemo, than radiation, then hormone blocking/inhibiting medications.  Finally. 

Finally.  Are we there yet?  Depends on which there.  I am “there” if there means the end of the really invasive, get-in-your-car-and-go-to-it kinds of therapies.  The “you-know-this-is-gonna-be-not-fun” kind of treatments.  Yea, for at least the next 7 months, no more painful procedures (I think).  Just drugs every day, and “cross your fingers and hope not to die” that the bad side effects won’t come to roost in my poor little body.

Poor pharmacist, I was kind of a pill (HA!  A little drug humor!) on Saturday when I went to pick up the prescription.  As she listed off the potential side effects I should be aware of, I blurted back a guffaw and a smartass response.

Pharmacist:  You need to be aware of any chest pain.       me:  HA!  I already got it!  Burned on one side, stretched tight on the other side!  Been uncomfortable for so long it almost feels like normal!

Pharmacist:   Potential for reflux    me:  urp!….already got that too.  That came with the radiation.    

Pharmacist:   Fatigue      me: ZZZZZZZZZZZZZZZZZZZ   already so tired………….

 Pharmacist:  hot flashes       me: Oh! excuse me while I rip of my hat/top/coat/ shirt/ whatever……….!!

and so on and so forth.  Every potential side effect, I already know on some level.  I eventually stopped being a jerk and took my drugs and went home. 

And there it was on a Saturday afternoon, all by myself,with no nurse, technician, beeping piece of equipment or Monster of  a Machine, I took my first arimidex.  Nobody in the house gave a hoot for the irony of the situation……  Probably for the best, I guess.  After all this time, tons of appointments, lots of interventions, the most important drug is gulped down without even a weakly sung fanfare!

So three days of arimidex down and 1,822 to go.  Fatigue is making me nod off at the keyboard.  I’ll have to tell you about todays’ Zometa#2 another time.

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.

awww geez…………

November 9, 2009

Oh for God’s sake.  Here it is 4:51 am on Monday morning , coffee is brewing, I’m just trying to get dressed for work, and I can’t find my new boob.  Somewhere in all that emotional instability of the last radiation on last Friday, I took the damn thing off, and…I don’t know where she is.

Guess I’ll go find a couple of old shoulder pads to quick-like stitch together to stick up under my shirt to create a pathetic bump-for-a-boob.  Thank goodness I’m doing a lab demo today, maybe with a couple layers of shirt and an apron it won’t look too bad..

Honestly.  I have no idea where the stupid thing is.  Funny how your brain blocks some things out.

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.  :^(

 

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.

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.