quick update

I’ve been remiss in not updating my progress here.  Sorry.  Fulltime work, going to PT and medical appointments along with motherhood and life in general…keeps me busy.

PET Scan – Radiation Oncologist said, “stupid test, too expensive, inconclusive..”  Also said he’d make the appointment for me to see Dr. Butler….the queen of all docs, the “Surgeon” and I say that with a mix of both fear and respect.  Butler has more experience than anyone else in town with breast cancer and has seen plenty of fat necrosis, tumors, and all things foreign in breast tissue.

My appointment with Butler was this past monday, and her opinion on the lump, after a considerable amount of time wielding the ultrasound wand was…………the lump is “rib”.  The lump will not have a needle stuck in it. Too close to the heart and the lungs, and risk of puncturing a lung or worse is too great.  Great…good news, right?  Wish I could get my mind to believe that.  In my heart I don’t believe it, but I guess I have to believe it.   I’ve had Medical Onco, Plastics Guy, Radiation Onco, and now the Surgeon all say, “nah….probably not tumor.” 

My Supreme Surgeon did, however, express great concern with the decision of GP to take me off of blood thinners after only three months.  Concerned enough to insist that I call the Hemetologist/Oncologist at U of M to get another opinion, and while I’m at it (she said in her most authoritarian way) get her opinion on the method and plan for the finish of the reconstruction (which is currently planned for late January.)  She didn’t like the PS plan to just remove the lump….because after all, she thinks it is my rib.  My rib grotesquely contorted out of shape.  From the plastic surgery. 

*Sigh*

10 days later and the truck is still parked on my chest

or at least that is what it feels like 10 days out from the TRAM FLAP surgery.  I might add that it is not exactly uncomfortable, not really even painful, just a lot of pressure.  Really, really tight skin which makes me hunch over.  Hunching over without the support of the walker causes significant lower back pain.  So.  I use the walker…not really to walk, but to prevent back pain and support the front side.  I don’t want to sound like I am complaining, because, truly, I have it pretty good.

It’s good to be alive even if I am bored with convalescing already.

lucky me

lucky me, my support person, BFF from 20 years back, Sue, has arrived in Ohio to be the back-up backbone of the family while I enter phase four of the cancerland ride. 

In three days I will have the first of three surgeries (the “delay procedure”) for the breast reconstruction process.  Tomorrow morning I have an appointment at St. Vincents Hosptial for a pre-surgery exchange of information and body fluids. 

Eyes wide open, I am anxious, in a good kind of way, for this process to begin. Once it begins, it is then just a matter of time and experiences before it will be done.  and over. 

I feel no fear at all, so please don’t be afraid for me.  It’s just not necessary.

things are beginning to pick up around here.

 

Nothing says “it’s time for surgery” quite like an autologous blood donation.  So yesterday I went to the Red Cross and stuck out my arm so I could bank a bag of blood.   With any luck, it will have been a needless precaution, and Dr. B won’t have to use it during my “big deal” surgery on June 17th.

I haven’t posted much as I have been dog tired after days that begin at 5 am and end at 10 pm or later.  School is almost out, and that means lots of extra work from grading to packing up two classrooms, final reports etc.  In addition, trying to get ready for two surgeries, plus be a mom, and try to pick up the slack at home since Lou has been disabled by knee surgery.  It has been an intense month in all spectrums of life.

But I’ll keep you posted on all the highpoints right here.

thoughts while driving to appointment today…

If your breast expands exponentially and independently will you eventually explode? 

Thats what I found scrawled on the scrap of paper I keep in the car while I drove to my hastily arranged ultrasound appointment this afternoon.  Last night I got to see one of my “guys”, Dr. B, about my big and getting bigger boob, right side.  Getting bigger as in: seeming bigger, seeming to settle down….then getting bigger, and seeming to settle down.  Or at least that is what it has been doing for the last week or so.  Except for the last three days.  Getting big…..getting bigger…..bigger…..even bigger….  On Wednesday the boob-with-a-mind-of-it’s-own started  pulling the special bra, the one that holds the “foob” on the left side in place…over to the right side.  Last night in the middle of the night I woke up feeling like some crazy PS snuck into my room and expanded me 200+cc’s.  Not very funny was my first thought…..whichever brain cell decided to sneak that one in doesn’t know about my particular distaste for nasty misogynist horror films.

Anyways, B’s nurse managed to get an appointment for me today at 2:00 to receive a little ultrasound view of whats happening.  Except I got some kind of Buffy the technician sonographer who told me she worked at Stanford for a year until she came back to Toledo.   OK, I thought, I trusted you up until then….  Of course she saw “nothing”.  No doc came into the room at all.  Apparently he looked at the images remotely and also saw nothing.  They really did not care that I told them it is definitely “something”. 

Right now at 10 pm I think it is even bigger than it was today.  I can feel the boob-with-a-mind-of-it’s-own now pulling on the radiated skin on the flat scary-scar-ry -side -of-my-chest.  Now that’s a definate sensation of creepy and not comfortable.  Who ya gonna call?  Wish I knew.

And as if that weren’t bad enough, Dr. Evans, G.P. called and told me the blood test last monday showed EXTREMELY hypothroid.  And NO WONDER you feel tired with results like these!  Should be in the 4-5 range, but my number is way, way, WAY higher.

Now it’s not that I want to be sick, but when you do feel crappy, it’s nice to have those feelings validated in reality. 

Tooo tired to write anymore……….let’s wait and see what tomorrow brings.

my relationship with Zometa

Monday was Zometa #5, the infusion that almost “wasn’t”.  I’ve been having problems with my right arm for a few weeks.  Weakness and weirdness.  Not exactly painful, but uncomfortable.  Well, really uncomfortable, but it only occurs under certain muscular tensions, such as carrying a grocery bag with handles down at my side or brushing my teeth, that is where I noticed it first.  Now though, I have noticed that handwriting is really uncomfortable, too.  It makes the lower muscles in my arm ache first, then the muscles in my upper arm, then my hand.  Ouch.

So I had the distinct impression that I almost lost the infusion, in that my nice clinical trial nurse said, “hmmn, I have to talk to the Dr. first, and be sure it is OK for you to get the Zometa today because the (infusion) nurse is nervous about giving it to you.”  I got a little panicky…..as in, no, no, don’t take away my zometa!  There I was, all alone having a little tiny freak-out session about not getting a drug that is a clinical trial drug anyways because I have completely psyched myself up that this is (again) going the extra mile in “The Saga of the Slaying of  the Cancer Killing Cells.”

then later, it hit me like a shot in the middle of the night.  This must be what an abusive relationship is like.  I want to keep on living with Zometa, and my well meaning friends (nurses) might be suggesting thinking about twice about this…….may be thinking that.  No one has come right out and said that.

Hmmnn.  Also have a problem with my right eye being really easily irritated and getting red.  Actually both eyes have been really puffy in the evening and morning.  What’s up with that?  And just feeling kind of shaky in general.  Tired.  Exhausted, really.  Shaky.  Add to that the high blood pressure news from last month from Dr. Evans, and well……….this is all challenging my image of myself as a basically really healthy person who just happened to get a little case of cancer. 

I’m working really hard at maintaining my PMA (positive mental attitude.)

Saw Dr Evans yesterday, and he mentioned that fear of losing Zometa is probably pretty normal.  Made an analogy to Zometa being one of my “shields” in my battle against cancer.  Yeaaaa….that’s it.  That’s exactly it.   And by the way, now the friend count telling me I don’t look so good is climbing, so I guess it is not all in my head after all.

The bright spot?  Saw Veronica today for some “Healing Touch” at The Victory Center.  When I told her I am now daily dependant upon the Dali Lama chant CD, she quickly switched the music to a special higher vibrational level CD that I must find and buy.  I quickly zoned out on it and it is better than any drug, I’m sure.  It was so good to completely relax. 

falling asleep here at the keyboard….putting dali on the CD player…more later….

A New Year

So this has been on my mind since Christmas.  What does this new year mean to me?  What are my dreams for 2010?  To be certain, I don’t have any fantasies of forgetting about cancer, or being cancer free.  That will never happen.  I understand that now.  “Remission” is a concept….and one I’ll not treat my brain to until I stop refilling the Arimidex ‘script (around November 2014, if all goes well in the next five years.)   And for the idea of being “cancer-free”?  Not possible, I don’t think.  It’s kind of like being a mom.  Once you have a baby, that child is always a part of you, even when they grow up and move away.  Which, by the way,  is my plan for cancer.  When I grow up, it’s gonna move away.  Still in my mind though.

I could say that I’ve turned over a new leaf and I’m going to start living healthier, except…I already was.  I already was living a healthy life (stated with undertones of sarcasm) with lots of pysical and mental activity, eating right, was fairly well informed and doing good things for my community.  So I pledge to be healthier.  I am examining every bite I eat, adding the minutes of real exercise and reducing alcohol intake to a minimal amount, consumed only if seated at a meal.  I am meditating every day, examining my motives, and trading stress for zen, well, at least I’m working on that last part.  Even though I think I’m doing well when I step on the scales, I’ll be losing more weight. 

So this is what I want for the New Year.  Well, to be honest, I want a lot of things, but mostly what I want is to feel like I have made a difference.  I hope that I have influenced someone to take their health care seriously.  Not just in the real gritty mean streets of cancer land, but in all health matters….listen to your body.  (I do kind of feel like a hypocrite with that last thought, because I was the queen of denial last Spring.) 

I am still dedicated to the idea of using this stupid cancer as a teachable experience.  I don’t know exactly how to best do that, but I am trying.  I’d love it if my story became the impetus for someone nagging their mother, their sister, their friend, themselves to pick up the phone and make an appointment for a mammogram.  I hope that women, once in their Doctor’s office, or with a Nurse Practitioner, demand to be shown how to do a good and effective Breast Self Exam for themselves, and not feel uncomfortable about it.  God knows if groups like the U.S. Preventive Task Force (see my post from November 19th) have their way, you’ll really be on your own with detecting breast cancer. 

So in the end, I refuse to say that 2009 has been a bad year.  It has been a hell of a year, but it could have been worse.  I could have had a Doctor who didn’t notice the lump…the same lump I didn’t feel.  I’m grateful for Cindy Parke (Certified Nurse Midwife extraordinaire) beyond words.  Without her experienced touch, I don’t even want to think about where I might be today.

good news – bad news

Well, the good news is that I finally received test results back from my estradial blood test nearly two weeks ago.  Estrogen level was LOW, which, for the maintenance drug to work effectively, is GOOD.  whew……  That was how I started my day, with very very good news.

I also had an appointment with a Promedica nutritionist…..it was good to discover that I am right on track with my assumptions of what I should be doing nutritionally. Lose a few pounds.  Exercise more.  More fruits and vegetables at every single meal. Meat as a condiment, not the main part of the meal.  Eat a more balanced lunch every single day. Conservative multiple vitamins and fish oil are OK.  However, the shocker was the admonition, “no alcohol”.  I thought the new rule for me was “MODERATE consumption” meaning only 1 glass of wine per day.  Even that is a change from my BBC life (BBC=Before Breast Cancer), and one I can make, but NO alcohol?  I think her exact words were something like: “consuming alcohol is like adding fuel to the fire for a Breast Cancer patient.”  

I can’t even tell you how disappointing that is.  One of my greatest joys in life is to consume a great meal with my husband and friends complimented by a great bottle of wine.  So no wine?  Not even a glass with dinner?  I just don’t know.  I don’t know if I can follow that advice.

Actually, I asked Dr. Rubin this exact question a month ago, and he thought my past moderate alcohol consumption couldn’t have possibly been enough to have caused cancer…….and his recommendation was 1 glass of alcohol per day is acceptable.

But, ya know, once you have been through what I’ve been through this year, you’ll do just about anything to NOT get cancer again.  This suggestion has presented me with a major cognitive dilemma, and one that is not going down easily.

This is now the top question I have for every doc I see as well as all my BC friends. 

more later, I’m falling asleep again at the laptop……….zzzzzzzzzzzzzz

Kathleen Sebelius is cool but Susan Love is still an idiot.

So the mess created by the U.S. Preventive Task Force, you know, the ones that this past Monday recommended: 

• that most women should not start routine screening until they are 50, (the current standard is 40).
• women 50 to 74 years old be screened every two years (currently the recommendation is every year) 
• discouraged doctors from teaching breast self-examination.

You might wonder why in God’s name would any group make these recommendations?  well, their reasoning is that studies show that “the additional benefit gained by starting screening at age 40 years rather than at age 50 years is small, and that moderate harms from screening remain at any age.”  Tell that to women who have been diagnosed at age 40 (and younger) and are alive today because a routine screening mammogram found a suspicious shadow. 

Yesterday, Kathleen Sebelius, (secretary of health and human services) said that the statement released  by the U.S. Preventive Services Task Force, had “caused a great deal of confusion and worry” and they are “an outside independent panel of doctors and scientists who make recommendations” and who neither “set federal policy” nor “determine what services are covered by the federal government.”  Thank you Secretary Sebelius!

“The task force has presented some new evidence for consideration,” she added, “but our policies remain unchanged. Indeed, I would be very surprised if any private insurance company changed its mammography coverage decisions as a result of this action.” 

Let’s hope she is right.  On Tuesday, I spent time with NP Joan and my medical oncologist, Dr. Schott who both acknowledged the information this recommendation is based upon has been out there for years, but the benefits of routine screening mammograms clearly outweigh the downsides.  Schott believes this is a purely political statement released at a sensitive time in our country, just when it appears there may be some consensus on the new Health Care guidelines. 

So I asked her what she thought of the arguments that beginning mammograms at 40 would expose women to excess radiation.  Her response?  “You get more radiation in a cross-country flight than you do in one mammogram”  OK…so what are the other objections of the conservative researchers who want to eliminate our yearly treks to get our boobs smashed in the big machine…

Some researchers say mammograms at 40 should be eliminated because it causes “unnecessary anxiety”.  My perspective is that it may cause anxiety, but from where I sit now, still alive and actively working on being cancer free, it is a completely necessary anxiety.  I am incensed that any group would suggest that I not be completely proactive with my health carebecause it might cause “unnecessary anxiety”!!  What are we?  A bunch of little girls?  WOMEN, adult women, are a resilient bunch.  If we can handle working AND mothering, we can handle husbands AND children, and we still do MOST of the house work while we ALSO work outside the home, I think we can handle a little yearly anxiety when we get the mammograms.  The idiots who suggested these guidelines clearly don’t know the women that I know.

And the recommendation that medical professionals drop the teaching of Breast Self Exams?  Oh my god, what should we do with that?  Whenever we discourage education in this country we just look like idiots!  (Think Kansas and science education recommendations in the 90’s ).   Why in Gods name would you discourage women from getting to know their breasts better?!  My guess is, most women kind of half heartedly do the BSE, or forget about doing them until they hear a breast cancer story of someone they know.  Lots of women just don’t like to do it.  This recommendation is dangerous because it gives women mental permission to say, “oh, well, it doesn’t do any good anyways”.  And women who might have been guilted or scared into doing their BSE’s will drop them completely.  If that happens, I guarantee you, cancers will be found later rather than earlier, and women will die.

I guess that is what has pissed me off so much about this.  It is a numbers thing vs. a human thing.  If anyone seriously embraces these guidelines, even more young women will die from breast cancer.  This doesn’t have to happen.  We have the tools to discover cancer before it is big enough to metastasize to other organs.  It is early screening mammograms, and breast self exams.  You know that, I know that , the American Cancer  Society knows that, and I can go on and on…….

I have so many more words inside of me on this topic, but I HAVE to go to work now.  As an educator.  I promise I’ll never go backwards in my education endeavors as the U.S. Preventive Task Force has.  Shame on them.

I’ll tell you what I think of Susan Love when I have more time.

Is radiation painful?

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.  :^(