Archive for the ‘arimidex’ Category

5:30 am

October 7, 2010

This is what I wonder. 

WHY did I forget to take the Arimidex two days in a row?  Realized that error last night.  I’m thinking that is why I woke up two times in the middle of the night.   Punishing myself for this huge error.  (I’ll surely pay for the lack of sleep today…….)

Arimidex is the biggest weapon I have in my fight against reoccurance.  Makes no sense I would forget it.  Sixteen months post chemo, and I’m still missing important connections.

This is what is pissing me off the most.  Then, as soon as that thought goes through my mind, I think of all the people I’ve met in the chemo and radiation waiting areas, at the cancer  benefits etc. who are still in the middle of the big battles, and some of them have even lost the fight.

God, I hate internal conflicts.

Advertisements

the goal is 2.0 to 3.0

July 6, 2010

With the DVR (Deep Vein Thrombosis) diagnosis, you get to make a new set of friends with the phlebotomists.  Ironically, I went through the holiday weekend, being driven back and forth to St Luke’s Hospital with my friend Bill (who was diagnosed with DVR just 4 days before me) for our daily blood tests.  It was almost OK to go through this crap with a friend.  Except for the fact that I still have stitches in my abdominal wall, and all the stupid jokes hurt.  Anyways, the drill is: 

  1. Get somebody to drive you to the hospital
  2. Hope the place has your orders so you don’t have to go through a big hassle
  3. Get your blood test.  If you can only use one arm like me, hope to hell your technician is really good, and doesn’t rip up your vein too much since it is getting so much attention.
  4. Go home.  and wait.  for hours.  until finally….
  5. The phone rings and the nurse practitioner calls to tell you what your PT/INR level is and how much coumadin to take that day.

Seriously.  Your dose of Coumadin can easily change from day-to-day until you are “stabilized”.  You are stabilized when your INR level (for most people) is between 2.o and 3.0.  Sometimes this can take weeks.  Saturday I was at 1.0.  Sunday I went to 1.1.  Then on Monday, a little hop to 1.3…

And amazingly, I have good news.  The twice daily injections (that is self-injections…..ick) of  quick acting short-term blood thinning drug “Lovenox” and long-term drug “Coumadin” has worked well for me.  Today I was rewarded with an INR level of 2.1!  Might not sound exciting, but it means no more self injections, no more support stockings, and no more daily blood tests.  I have graduated to twice a week blood testing schedule!  (It’s all relative………)  If I am really lucky, my levels will remain in to 2-3 window, and I can get through this medical phase quickly.  Quickly means maybe only six months of this drug.  Of course, it also means putting off the surgery I had hoped to have in August for six, seven months or more………..  Sigh………

Now for the serious news.  I have to meet up with my medical oncologist again to determine if my maintenance drug, Arimidex, is responsible for the blood clots.  A serious question that needs to be discussed is:  Which is more risky…..going off Arimidex and risking recurrence of cancer, or going off of Coumadin and risking blood clots. 

:^(

thoughts while driving to appointment today…

March 4, 2010

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

February 25, 2010

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….

back to blood tests

January 12, 2010

Since I am going back to the vampires again tomorrow for my every other week blood test, I thought I’d better have the results of the last blood test, way back in 2009 (12/30, I think.)  Since NP Joan is gone on vacation it was incumbant upon me to call for test results.

This time I didn’t have all the anxiety that zapped me just before Christmas.  Guess I’m finally getting mellow about it all.  Maybe the LACK of estrogen is responsible for my “c’est la vie” attitude.  Yes, the estradial test level came back at 2.  Remember, I need low estrogen levels for my maintainance drug to work properly. 

Arimidex is a little white nondescript pill that I greet every morning with, “you’re gonna go and save my life now little buddy, right?”  God, I hope this works.  Only time will tell I guess.

A New Year

January 3, 2010

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 itGod 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

December 30, 2009

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

And I have had it with people complaining….

December 14, 2009

You know I really try hard to not whine about things…but when I hear others complaining about how things aren’t working out for them, I have to bite my tongue.   What I want to say is “Get a grip!!  Whatever your problem is, it  is not that important!”  But no, I don’t go there. 

Quick summaries:

Liquid Gold

So last week I saw the plastics guy, my favorite doc.  It had been six weeks since my last radiation and the skin on my chest, while still pretty unattractive, looked a LOT BETTER than it did in the weeks after radiation.  Therefore,  I was kind of surprised when he called in his oncology aesthetician to inspect the skin on my chest to make recommendations on the correct product to prescribe for the burned field.  Remember, we are going to ask a lot of this skin in about six months when I hope to do the breast reconstruction.  Hope to turn the scarred, ribs-showing and tattooed (compliments of the radiators at Hickman Cancer Center) deformed chest wall into something round and smooth and good lookin’ under a t-shirt.   Well.  Let me say this.  It is amazing just how much .o8 oz of a special, special gel (TNS Recovery Complex) costs.  Never in my life have I spent so much on so little.  Also, never in my life did I think I would be so easily won over by a tiny bottle of very expensive product.  Check it out: http://www.skinmedica.com/skin-care-products/anti-aging/tns-recovery-complex  I think I might actually buy this little bottle of liquid gold again even after the reconstruction.  Gotta be cheaper than a facelift.

The Estrogen Story

It’s been almost two weeks since my last estradial blood test…this is the blood test I’m doing every two weeks for the forseeable future to be sure the daily dose of arimidex is not in vain in fighting my estrogen loving cancer cells.  Hadn’t heard the results of the last test, and believe it or not, getting the results of your own blood test are not as easy as one might think.  Like you can’t just call the lab for the results.  Privacy issues.  They can’t tell you your own results over the phone.  Unbelievable. 

Anyways, I finally got the results from NP Joan at U of M, she wrote, “the estradial level was at 14, higher than expected”.  YIKES!  Does 14 mean I am not in menopause?  Geez, now I gotta do more research on this.  If I am not in menopause, I have to switch drugs, and begin taking Tamoxifin, which is OK, I just want every day of my life now to be taking the right drug.  Being cancer free depends on the correct drug being in my system 24/7 for the next 5 years.  I feel like I am being a little obsessive about this, but my “new life” definitely has a paranoid edge to it. 

So I will travel up to Toledo again on Wednesday to get another blood test and this time I can’t decide if I smother them with charm or bitch like crazy lady to receive the results of the test within days instead of weeks.  It has been an anxiety wormhole, this menopause/estrogen level puzzle.

What would a week be without a Doctor visit?

Saw my local General Family Practice guy today.  First time I have seen him since my trip into cancerland.  Oh, I like this guy a lot.  He is quite patient and smart and listens.  We had a nice long discussion today, and it was nice to talk with someone knowledgable, who knows about me, yet isn’t taking “sides’.   I was really quite comforted that he was alarmed at the things that alarmed me in my story (remember the chemotherapy decisions?)  as well as agreed with the difficult decisions I’ve made (to take the radiation route).  It was perhaps not a necessary visit, but it made me feel better.  Even better, he invited me back to talk anytime……I always knew I really liked him for a reason.  If you need a GP, let me know.   I’ll give you a referral to this “good guy”.

Just bein’ nice AGAIN!

Those incredible teachers at my school have done it again.  This is our second “Just Be Nice” week.  This time we are focusing our efforts on local families in financial need this holiday season.  I’ll tell you more in a couple days.  The fatigue factor has set in again and I’m nodding off at the keyboard.  Again.

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.