Archive for February, 2010

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….

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cancerversary month

February 15, 2010

So yesterday, Sunday morning I was listening to On the Media, an NPR program, which was doing great piece on Black History Month.  Then, they played this recording of Lucille Clifton reciting her poem, won’t you celebrate with me.  While I in no manner can relate to what it is like to grow up black in the United States, I could completely relate to this poem from a “sickness and health cancer-living” perspective.  Since this is my cancerversary month (yes, it was a month, exactly from the day when Cindy Parke, CNM, said, “Hmmnn, I don’t like the feel of this” to receiving the results of a mammogram and subsequent biopsy) I thought I’d post this.  Tell me what you think.

POEM

won’t you celebrate with me

by Lucille Clifton

won’t you celebrate with me
what i have shaped into
a kind of life? i had no model.
born in babylon both nonwhite and woman
what did i see to be except myself?
i made it up
here on this bridge between my one hand holding tight
my other hand; come celebrate
with me that everyday
something has tried to kill me
and has failed.
 
 
I have spent a LOT of time this past year, “my one hand holding tight my other hand”.  I cautiously, and with a bit of fear of being premature, celebrate the fact that something that has tried to kill me has, so far, failed.
 

my brain is bossin’ me around again…..

February 13, 2010

3:55 am Saturday morning (the following is the conversation I had with my brain for the last 20 minutes.  It is bullying me into doin’ this post.)

Me to my brain:   “Ok, Ok, I get it. This time I’ll comply….but only because it is saturday and I don’t have to wake up in an hour or so and go to work.”

My brain: “get the list started.  To do: write the block plans for next school year”

Me:  Are you kidding?  You woke me up for this?  To make me write a  list for something to do for next school year?  Forget it.  I’m not doin’ it.  I’m exhausted.  You have messed with my mind for the last two days at precisely 3:15 am and not let me get back to a good night sleep.  I ain’t gettin up now in the middle of the night to write myself notes about organizing for next school year.  You ain’t the boss of me!

Brain:  Uhhh, actually, I am.   Get up.   Write out the lessons for next school year.  Make sure to  have the school nurse not cover so much info in her guest appearance in your class.  Utilize her as a good resource for two things only….body image and sleep.  

Me:  But, lesson plans for next school year???  too much can happen between now and then.  I’m not doin’ it.  I’M TOO TIRED!  YOU HAVE KEPT ME UP THE LAST TWO NIGHTS WITH THIS LIST MAKING OBSESSION!  Anyways, lesson plans for the next school year are best blocked out the two weeks before school starts……you don’t know what great ideas you might have over the summer….who you might meet…

Brain:  Get up.  Write it out about the plans for the nurse.  YOU are the one who doesn’t know what is going to be happening the two weeks before school starts. 

and then it hit me.  ohhhhh yeaaaa.  that’s right.  I really don’t  know what is going to be going on with me in mid august.  God knows I have a plan for June, but my plans for July and August are really all dependant upon the best possible outcomes happening in those months. 

So I have been so busy lately with big deal kid and family issues I haven’t had a single second to write during normal daytime hours.  I guess that is why my brain is waking me up so damn early lately.  (Third day in a row the wake-up call has been in the three o’clock hour.  I am SO TIRED!)   I have recently scheduled the first two surgeries for my reconstruction!!  Finally!  I had been badgering Dr. B about discussing and scheduling these dates for 6 months, he kept putting me off until I completed all my physical treatment for cancer (the chemo and radiation).  I didn’t like that answer then, but after the awfulness of  radiation I understand his reasons so much better now.

Anyways, the first reconstruction surgery is scheduled for June 3 and it is called……..ummmm, I forget the name of it.  It is a relatively small surgery compared to the “flap”…  and the second surgery, the BIG surgery, the TRAM Flap is for June 17.  The third surgery, the “exchange” surgery can’t be scheduled until the flap surgery has settled down and the swelling has gone down enough so we can see exactly what that left reconstructed breast really looks like, so the new right breast can be sized and shaped to match the cancer side new breast.  Therein lies my brains’ anxiety I think.  I really don’t know where I will be in the surgery and healing process in August.  I could be in a Percocet fog.  I could be just getting ready for the third surgery in the week or two before school starts.  Hell, I’ve had cancer…God knows whose office I might find myself in………  I keep remembering that.  Remission is NOT on my vocabulary list.  yet.

I’m your cancer “go-to” girl

February 2, 2010
 
This is not a position I applied for, but it appears it is a job the universe has given me for the time being.
 
This is a short story about vegetables, cooking, the Farmer’s Market, and one Farmer in particular.
 

Andy's vegetables, Toledo Farmers Market, January 2010

  I have always LOVED going to the Farmer’s Market.  I loved Farmer’s Markets before they were cool, even.  As a little kid I remember going “to Market” with my dad a couple times and with my Aunt who sold eggs once as well.  This would have been back in the early 60’s, and then it was only called “Market”.  I guess it wasn’t necessary to include the occupational code term of “Farmer” at that time.  I loved the many diffeent sights, sounds, the early morning, and most of all the people.  All different types of people that this little farm girl didn’t normally see around Cygnet and Hope Lutheran Church, my two social outposts of childhood.      Well, I still go to Farmer’s Markets now, and they have changed.  Now it’s cool to get your food at an open air market and to speak a few words with the grower of the goods.  I LOVE to browse the fresh food, and I love to talk with the growers.  Some talk a little more, some a little less.  My favorite guy is Andy Keil from Swanton.  This big bear of a guy is always at the market, always has a big smile on his face, and since I have begun my trip into cancerland, has always asked about me.  Here is a sample of our conversations this past year:  Andy, “How’re ya doin’?”  me: “oh….pretty good…” usually followed by a brief explanation of what’s happened recently or what is to happen next.  The conversation always closes with Andy saying, “Well, you know I’m still prayin’ for you.”  And me, the true Unitarian, I always reply, “Thanks Andy, I’ll take all the prayers I can get.”   Because of course, if there is a Holy Trinity up there somewhere, I’m pretty sure I’m not on the “save” list.                       

Farmer Andy and me at Toledo Farmer’s Market, 1/31/10                   

      

Well, this week Andy had a little sense of urgency in his voice when he greeted me.  “I was hopin’ I’d see you here, because I got something to ask you.”  “Sure Andy, what do ‘ya need?” I replied.   “It’s time to return the favor for me.  You know how I always tell you I am praying for you?  Well…..”   and he went on to tell me of a very recent medical appointment that ended with a surgery date coming up very quickly to remove a suspicious tumor and adjacent tissue.  And when he was given the bad news, he said, “You know, you were the first person I thought of.”   I really felt kind of honored, in a wierd kind of way.  I told him that personally, I really think tumors suck, and I hope that he is one of the lucky ones to not get admittance into the cancer club any time soon.  We chatted for a few more minutes about how he is way too busy growing food for me to get sidelined with this  surgery and treatment business for too long, and I was really glad he is proactive about his health, and taking care of the important business of living life.                    

  

                

Of course now I have to get busy with the praying part.  So I did today.  At home on Sunday afternoon, my son, Louie, carefully peeled the parsnips and carrots and I did the turnips.   I then chopped them up into slightly larger than bite size along with the red onions and a potato, threw a few homemade frozen “pesto cubes” on top and then opened a can of Dei Fratelli chopped tomatoes to add a nice liquid base with beautiful tomato pieces.  The whole while thinking of Andy, and hoping that his great Karma and good nature will get him through the surgery he has scheduled in about 10 days.   This is basically a big pan of vegetables that will last about five days in my house through all my lunches at work and a few dinners at home, also.  Now I can’t help but think of Andy when I pull out my veggies.  This is how a “foodie” prays.  Or at least this is one way I see “prayer”.           

               

Dinner Sunday night, Andy’s veggies, Trader Joe’s Brown Jasmine Rice and Brown Rice Medley (and yes, I am drinking that wine!)  Of course,  this is a lot of vegetables, and I cook this way to streamline the food “prep” through the week.  My new favorite food thing is prepping five individual containers of “chow” for the week to have healthy and filling lunches every day without having to do a thing, except pull it out of the fridge…….          

 
 

    

 This is such a good lunch, I can’t even begin to explain.  But I do think of Andy now whenever I pull out his vegetables….and when I think “ummmm, this is sooo good!”   I am saying a prayer that my favorite farmer is back in the field this Spring, and not in a Medical Complex someplace decoding a whole new world.   

Thank goodness for those who have travelled this road before me.  When I was first able to utter the word “biopsy”, it was to my friend Kathy, who had been there before with Breast Cancer.  When I started thinking about my mastectomy and how to recover, I was so grateful that my Chinese sister, Helen, spent hours on the phone with me.  When it was apparent I was about to lose my hair, Cathy and Diana loaned me their wigs and hats.    

I’m truly grateful that Andy asked me to pray for him, even if I’m not a very good pray-er.  Gives me a chance to “pay it forward”.   If you are good at praying, you got a direct line to Jesus and God, would you put in a good word for Andy?  He so very much deserves it.  I want him to keep showing up at the Farmer’s Market for many years to come.   

                  

                      

                          

                            

                       

 

wide awake 3:30 am

February 1, 2010

DAMN!  wide awake since 3:02, not hot flash induced.  woke up making lists in my mind.  experience tells me I must write it out to get back to sleep.  here goes:

things I have to do this week:

  1. follow husbands progress..getting his echocardiogram today.
  2. finish making more hat and scarf sets for the silent auction for charity at school
  3. read over new curriculum for new portion of Financial Literacy class I am teaching that will begin on Thursday
  4. make appointmnet with ummm, someone to discuss new ache in arms…had for 4 days now.  don’t know the significant nor the source.
  5. make appoint with Charley Dabbs, therapist.   yes, THAT kind of therapist…had taken a break since christmas, need to get back into the groove there.
  6. make dental apointments for both kids
  7. figure out how to do the electronic attendance thing with a borrowed laptop at school.  Still don’t have the technology working perfectly in the room I teach in 5 periods out of the day.
  8. make an appointment for Louie’s haircut, his Sea Cadet’s drill is this weekend, so I must get his stripes sewn on the utilities uniform as well.
  9. make another appointment with Dr. Evans.  Found out MY cholesterol is too high.  Gotta love this doc, he requests a 20 minute appointment.  Really, (not facetious) love him.

There I think that is it.  oNly 9 things to do after I get work and family obligations in this week.  Kind of hoped to get a manicure in this week, but that’s probably out of the question.

Oh.  Just thought of one more. 

10.  Figure out how to get more of the special-special $145.00 per .08 oz cream from Dr. Barone.  Turns out this stuff was fabulous on my radiated skin, but the discount was a one time only offer.  my income/budget ratio is pretty exact and of course insurance doesn’t cover this one.  :^(

There….powers that be….can I go to sleep now?  It’s 3:51 and I have to wake up at 4:40 am.