Archive for December, 2009

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

Dear Santa,

December 26, 2009

I just wanted to drop you a line to thank you for visiting my house this year.  Even though I know it must have been real difficult to figure out how to make it all work with the global economy in the dumps and all.  My kids seemed to recognize the newer, leaner Christmas, but they still really enjoyed the gifts you brought them and I think Lou and I filled in the gaps pretty well, too.  You still probably should have brought something big for Lou though.  Poor guy already feels dissed at work, and then has a fairly nonfunctional wife at home on top of it all too.  A new set of clubs might have been a real nice gesture for the inconveniences I have provided this year.

And while I do like my new watch, it is time of another sort that I didn’t receive (yet) that I would still like to have.  Can you still do anything about that?   Like, I would like to receive test results in a more timely fashion.  I know such a big holiday messes business schedules up, but could I get blood test results back in under a week for the new year?  I don’t mind the getting poked part, if I could just know the answers quicker.  The anxiety that organically foments by delayed test results is a difficult thing for me to control.

cancer is a drag, but I can deal with it if the health care system cooperates.

anxious, disappointed, waiting….

December 23, 2009

and it ain’t for Santa.

Exactly one week ago I travelled 20-some miles to one of the few Quest Lab in the area to get my biweekly blood test to check my estrogen level.  Too much estrogen floatin’ around in my body is bad.  It means the daily dose of Arimidex* I am taking to inhibit my estrogen loving cancer from finding a place to cozy up and reproduce can’t do its job.  As my new BFF’s in the oncology department at U of M said, “it is as if you are taking nothing at all.”  Ouch. 

NP Joan expected to hear from the lab today.  I called and left emails.  Usually she emails back.  I have obsessively checked my emails, and kept my cell phone in my hand.  Wouldn’t normally be babysitting this thought quite so carefully except that last blood test was higher than expected, and Joan suggested I hold off renewing the exorbitantly expensive ‘script if I had a few days left.  If the E level came back high this time, she would have…….what….I don’t know.  We never got that far in the conversation.  It was a wait and see.  I just don’t know if I can hold my breath all the way till next week without breaking something.  Like me.

I am so disappointed I could cry.  Trying to convince myself that another week without an answer won’t make any difference, but my brain can’t seem to let it go.

*For more info on Arimidex: http://drugarimidex.wordpress.com/author/forestadowns/

7 weeks post radiation, updated.

December 22, 2009

and I’ve had a potpourri of  12 medical-type appointments in those seven weeks.  So understand my bemused look when I am asked by my friends and co-workers, “Oh, so you’re all done with everything, now, right?”  Actually, I’m just beginning to realize that I’m not at the end of anything, but I have a feeling that this is more like the beginning .  Of a new life.  A different one anyways.

The life I am living right now feels 10 years older than even this past summer, while I was having so much fun drivng up to Ann Arbor every three weeks for hours and hours of chemotherapy.  Little did I realize then that my trip was only beginning.  Having had the opportunity to sample lots of waiting rooms and tell and retell my name and birthdate countless times, I somehow realize that this now IS my life….for this little phase of time anyways. 

So today was infusion #3 of Zometa, of the Bisphosphonate Clinical Trial, and my “graduation” from the NIA clinical study, too.   The “Zometa” is one adventure I’ll be on for three years, if all goes well.  So this was my first ‘Christmas’ in an infusion chair at Flower Hospital.  To the unsick that must sound awful, but it’s not that bad really, even though I was getting tired of being in a hospital today.  Perhaps the worst part for me is waiting to meet the nurse about to stick me, and wondering, “hmmmmnn, this a one poke nurse or is it gonna be two?”  Not even that I am squeemish or anything, but quite recently, I’ve become kind of protective of my veins.  Since I had a village of lymph nodes removed from my left side, I can’t have anything done in my left arm.  Not a-n-y-thing.  No blood drawn, not even a   cuffblood pressure…which seems like a little overkill beyond what is necessary.  Apparently,  the threat of lymphadema, (which I don’t really understand) is too great to ahve nay type of interference in that arm.  So I follow the rules.  No pokes in the left arm, the right side veins have to do all the work.  How do you build up the stamina and strength of your vein walls?  That, I’d like to know.

gotta go now.  i’ve fallen asleep twice while typing.  I’ll finish it otmorrow, or maybe by the light of hotflashes during the night.

Now it’s “tomorrow”  (12/22/09)

I can barely get anything written in one setting anymore.  I could talk in great detail about the new friend I have “fatigue”……but who cares about her.  I’m trying real hard to “ditch” her (unsuccessfully at this point in time.)

Quick paragraph here…yesterday I “graduated” from the NIA clinical study.  Nia is a form of exercise that is being evaluated in its effectiveness for breast cancer patients after radiation.  It is a combination of yoga, martial arts, and dance, all with big sweeping movements and a hefty dose of improvisation thrown in as well.  I thought it was really cool at the beginning of the study, but as time went on, I realized that I am  not the type of person who likes to exercise at home with a DVD alone in my room.  I need to get out with other people, or do something that is more interactive.  Somehow it just didn’t seem cool to be doing this beautiful meditative exercise program upstairs in my bedroom when the boys were downstairs screaming/ fighting/crying and threatening to kill each other over a Lego set or other “toy of the moment””.   Kind of ruins the mood.  So I barely did 15 minutes of Nia a week, mostly my exercise was listening to the music while I was getting ready for bed at night.  Working fulltime made engaging in an exercise program when I came home….just not that important.  or possible. 

But, an interesting part of the study is measuring your upper arm flexibility and exercise stamina (by walking) before radiation, 6 weeks into the program (that was one week after the end of radiation for me) and at the end of the 12 week study time.  Predictably, I was in pretty poor shape in the middle of the study.  Once again, I’ll go on record saying that (for me, anyways) radiation really sucks.  Flexibility on the left side, cancer side, radiation side, was quite low.  And walking…just…hurt.  You don’t know how much the skin on your torso is involved when you walk until something happens to compromise its’ flexibility. 

Suprisingly though, my measurements yesterday were good.  I actually walked a tiny bit further in the 6 minute test, and the flexibility measurements were almost exactly what they were in the baseline data.  So, all the effort I am putting into getting back into “routine” has at least helped in some measure my physical self………..even if I don’t feel at all as good as I did before radiation.  Still really not used to my freak-like chest.  Scarred and ribs showing on one side, blown up like a balloon on the other.  When I put my “specialspecial” cream on my chest everyday in front of the mirror, I still think  “I can’t believe this is me“.

Wonder if there is a clinical study that evaluates a better way to wrap your brain around this new reality.

good night

December 18, 2009

It was a good night of sleep last night.  I only had sleep interrupted once very briefly by hot flashes, AND I didn’t have to wake up so damn early for school.  Today is teacher work day, so I am lounging  luxuriously in bed now at 5:31 am.  Oh I’ll get up in a few minutes, I have lots of work to do.  Actually, I need about two weeks of teacher work days and then I might be close to being caught up. 

As soon as I get a chance this afternoon I’ll post a pic of our fabulous Just Be Nice day celebration this week at school.

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.

sleep math

December 10, 2009

I always hated story problems in math.  Here is a good one:

day four of awake at 2:30 from hot flashes this morning (except I don’t really like calling it morning…morning usually means getting ready to start my day, and I am really so not ready to start the day yet….)

so.  awake at 2:30, now it is 4:04.  Alarm clock usually goes off at 4:35.  Today I’ll hit snooze a couple times until 5:00.  Need to leave for work early (out the driveway by 6:15) to get stuff done that I can’t do at home because I’m so so so tired, and demands of family and children suck up all energy after 4:00 pm.  Can’t allow myself to sleep before 9:00 pm or else I’ll be awake even earlier.

Which variable can I manipulate to eliminate the dog-tired effects of post radiation fatigue and hot flash sleep inhibitors? 

Take your best guess.  Please show your work.

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/

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.

51

December 1, 2009

So today, December 1st, I am 51.  Sure the hell hope it is a better year than 50 was. 

Last year I had the best birthday party ever!  The best party I ever had, outside of our wedding.  Of course, a couple of months later, my world changed with the cancer diagnosis.

So this year?  Decidedly different.  No party.  No big celebration.  If I’m lucky, Lou will come home early enough to at least get a “take-out” dinner.  Of course, post radiation and with new meds and hot flash fun going on at all hours after midnight, I’m not much good past nine pm.   I’m kind of afraid to celebrate too heartily this year.

School was good though.  Had hundreds of really wonderful Jr. High students singing “Happy Birthday” to me all day long, thanks to BFF Laura for making that little fun happen.  Wonderful teachers and super secretaries and administrators wishing me well.  BNE (Best Neighbors Ever) Faye and John stopped by with a singing card and a Jan Pugh “cabbage bowl”.  (Something I always wanted!)

So, cautiously, I move into 51.  Holding my breath.  Keeping my fingers crossed……