Treehugger used my tip

Okay really small celebration here.  Treehugger.com used my piece on BPA and chemotherapy!   I am so excited.  Anyway, thanks for reading and here’s the link to treehugger.

Politics, Healthcare and your life

There are over 10,000 children diagnosed with cancer ever year. In 2004, 64,800 young adults, 15 to 39 years old, were diagnosed with cancer.

You know these people and you know me.  I’m the Mom you see at daycare drop off or at the PTA meeting. The kid you know from church on Sunday.  I’m the woman that works with you or your son’s soccer coach. I am just like everyone else. I am also a breast cancer survivor diagnosed at age 38. I had no family history. I had only had one mammogram, because I was 38.

I had lots of treatments. Two surgeries, 12 rounds of chemotherapy, 35 doses of radiation, physical therapy and more vials of blood than I care to remember. I have health insurance and I believe that I am alive because of it.

Like many of you I have been watching the coverage of the Presidential candidates. While I pay close attention to the health care proposals because of what I’ve gone through, I know they resonate just as strongly with others as well.  If you’re diabetic or have lupus, MS or asthma I know, or at least hope you’re listening.

I am fortunate to be insured through my workplace. I don’t personally write a check for my coverage but I was interested in what a $5,000 tax credit would buy. I had heard the horror stories but never checked it out for myself. I called some insurance companies today to get an estimate of what it would cost me to purchase individual health insurance.

Of four companies, three would treat the breast cancer as a pre-existing condition. No coverage for any services related to the breast cancer. No coverage for follow up appointments, annual PET scans ($3,000), no Femara ($381 per month for 5 years).

I found one company that offers a guarantee issue insurance.  The rates?  The least expensive plan that would cover me with a $5,000 deductible and a 50% copay would cost $1,400 per month. That’s the bargain plan.  The high end coverage with a $250 deductible and 100% copay would cost just over $4,000 per month.  I expect to live a long time and rates will increase as I age.

One plan is selling a $5,000 refundable tax credit.  But that would not touch the price of insurance and here is the really terrifying part.  If I were out shopping in the market for health insurance at 38 years old and healthy, I wouldn’t look for a policy with good cancer coverage. Cheap prescriptions maybe or maternity coverage but not cancer. Cancer doesn’t  happen to us. I’d be looking for a rate I could pay for and still pay off student loans and make car payments.  The only reason I have good coverage is because it is through my employer and is designed to cover everyone, young and old, healthy and the not so healthy.

If this is something that is important to you or to someone you love, I urge you to take the time to understand the plans that are being proposed.  It is more complex than a sound bite or a slogan can address. It may well be a matter of life or death.

Information about  both plans at  Dallas News,  Health Affairs,

Barack Obama.com,   John McCain.com Kaiser Family Foundation Health08

(If you want the names of the insurance companies referenced e-mail me at aftercancer@yahoo.com)

Zometa and me

So yesterday was my appointment with my oncologist to discuss using Zometa. As I have mentioned before I have problems sleeping and wouldn’t you know  Sunday night was an awful one.  Why am I explaining this?  So that you will have pity during the rest of this post.

In my planner I had a 2:15 appointment.  At my office dealing with an issue it was 2:05, 2:06, and I excused myself from the conversation, called and was informed that the appointment wasn’t until 2:45, yippee!

So I waited in the waiting room for a little while reading that Clay Aiken is gay (no I swear, it’s true) and listening to the waterfall.  The soothing, calming, drowsiness inducing waterfall as I begin to feel sleepy…sleepy. I’m called back by my name being called.  I walk back, get up on the scale, and get blood drawn.

“Wait, I’m just here to talk to my doc, I don’t have treatment” too late, blood is drawn.  Back to the exam room, “Okay, just take off your top and the doctor will be in to see you soon”.  You know those exam tables can be pretty comfortable.

So Doc arrives and I explain why I’m here.  He agrees that Zometa looks very promising and they are excited about the results it shown in women with metastatic disease. There are a few negatives;

1. Insurance will most likely not cover it as it is not indicated as standard treatment unless metastatic disease has started.
2. We don’t know the long term issues that it could cause.  At this point they have only been giving it to women with metastatic disease and that hasn’t been five years yet.
3. We don’t know how long we should give it to you.  With metastatic cancer they keep giving it to the patient for as long as it works.
4. Apparently is you use this your bones, particularly your jaw, get so hard that if you have oral surgery it can shatter.

So here’s the plan.  My doctor is going to investigate the studies in more depth to see if he can find guidance. His nurse is going to contact their Zometa drug rep to see if they have any information about insurance coverage and if there are any clinical trials pending. I am supposed to contact my insurance company about getting a “case manager” back in place.

So there’s the plan.  Had I not been so sleepy I probably wouldn’t have had blood work although I would probably need some before making any change anyway.  In my opinion this is how my team is supposed to work, a doctor who listens, a conversation about the options and a follow up plan.  I can’t ask for much more than that.

Brock McElheran

My plan for tonight was to write about all of the usual stuff that I’ve been writing about, cancer, kids, politics, the meltdown and then I received news of the death of Brock McElheran.

It was my incredible good fortune to perform under the baton of Maestro McElheran for several years during college. Others will write about his accomplishments in music composition, writing and choral conducting. They will write of his experiences as a fighter pilot.  They will write about the honor of performing under his baton as part of the Olympics at Lake Placid in 1980 or at the re-dedication of the Statue of Liberty in 1986.  They’ll talk about premiering new works and Brock rehearsing groups to perform under the baton of others.

I want to tell you two stories. I started my college career at the Crane School of Music in 1985 at age 17.  I was 8 hours from my family and l iving on my own for the first time as most college students are.   Shortly after arriving I auditioned for Collegiates one of the choral groups at the school and much to my surprise I was accepted.  This was a small group of singers and I and Brian Jackson (Hi Brian) were the only freshmen in the group.

We had our first rehearsal and in walked Maestro Brock McElheran.  By this time he had been teaching at the college for 38 years and was near seventy years old.  He was not a large man but filled a space with his presence. He informed us of his expectations for this group,  we had rehearsal  and he welcomed back old singers. Quite honestly I was intimidated and feeling out of my league. He made a point to speak to Brian and I.

“You!,  I don’t know you!  You need to stop me and say hello before we have our next rehearsal next week.”   Rehearsal ended and I went on my merry way, living the life of a college freshman with all that you remember that entailing.  I had walked by him once or twice in the halls but had not actually stopped to talk to him. Still intimidated I thought that talking to him between classes was presumptous.

Rehearsals for Collegiates were in the evening and we all usually wandered in after dinner.  We settled in and suddenly “You!” with a finger pointing at me.  “Yes Sir?”  I responded.

“You didn’t stop by to say hello to me this week!” Then a big smile.  After I got over being scared out of my mind I decided that from that moment on I would say hello to Brock McElheran.

I had the good fortune to be a part of the choir that celebrated the Crane School of Music’s centennial in November 1986. It was a “coming home” type of performance as we were performing at Lincoln Center in NYC, a train ride from my family and friends.  This performance was a huge effort in coordination; two hundred choiristers, the New York Philharmonic, Sherill Milnes as a soloist and under the baton of Maestro Zubin Mehta.

Upon returning to the hotel from a day of rehearsal I was getting ready to go to dinner when Brock found me and informed me that a call had been received from my parents and that I needed to call home.  This was before cell phones so I stood in the lobby of the hotel calling my parents with the assumption that they were confirming the performance that they were to attend.  Instead I was told that my grandfather had died.  Arrangements were being made. I was a mess, crying in the lobby.  Brock had reached his dear wife Jane and comforted me.  Jane took the phone, found out about the arrangements as Brock tried his best to calm me down.  He found the great guy that I had been seeing at the time (Hi Tyson) and sent us off for a walk.  When we returned a little while later Brock put his hand on my shoulder, expressed his condolences, told me not to worry about rehearsals and handed me an envelope.

In the envelope was the train information I needed to get home and more than enough cash for cab and train fare.  When I returned I tried to pay the money back to Brock who refused and just reminded me to be ready for concert call on time, suddenly the maestro again.

50 percent of all  music teachers in the state of New York and 20 percent of all music teachers nationwide earned their degrees at the Crane School of Music. Brock McElheran taught at the Crane School of Music for 41 years.  I can’t begin to estimate the number of lives and careers that he touched.

Me? I decided that Music education was not for me but I have continued to sing in all manner of choirs throughout the years. Never have I worked under the baton of anyone else like Maestro Brock McElheran and I suspect that I never will.

Good-night, sweet prince, And flights of angels sing thee to thy rest!

One voice

When I started this blog I thought it would mostly be cancer stuff, some posts about life and my family and things like that.  I have always been opinionated, just ask my parents.  But my initial expectation was that maybe this would become a resource, some place that people who were dealing with cancer and the life that comes after it.  I thought that I would help show the variety of ways that women and men deal with what happens after disease.

That has been the vast majority of the postings but lately this blog has gotten very political.  I struggled and was concerned that readers might get offended. Then I looked at the title of the blog.  I guess this is my now what.  If you haven’t guessed I am not a professional blogger. I am a woman.  It is that simple. I am a woman, a wife, a mother, a daughter, a sister, a colleague, a chorister, a voter and an American.   I am a feminist and have had times when I am an activist.  If I have offended you with anything in this blog that is unfortunate but do not expect it to change.

See, now that I have looked at death, and I mean really looked at  it I don’t care very  much what others think of me.  I don’t have time for that.  I am alive and will be using my voice when I think it will make a difference whether that be to help my kids, my community or my country.

Follow up appointments

Well today was the follow up PET scan and I’ve made it through thanks to Xanax and some understanding colleagues and my fabulous husband.  I guess I’ll get results by the end of the week.  It’s funny, I feel fine and am doing what I am supposed to do so I am confident that everything will come back negative.  Unfortunately I also felt fine when I was diagnosed.

For those who haven’t had one here’s how it works.  You go in for fasting blood work where they check your blood sugar.  Then they bring in the lead box, inject the radioactive tracer and then you have to wait for an hour.  During that hour you’re not supposed to move.  So you lay in this cross between an exam table and a Lazy Boy.  The location I have mine done at brings warm blankets.  I’m generally over heated to begin with but give me a warm blanket and lay me down at 8 am and I’m out.

Cancer is such fun.

So the imaging department called to schedule the PET scan.     “Alright, now remember you can’t eat anything for this, you can have black coffee or water only.  Our next appointment is Tuesday at 1 pm.”

Me: “1 pm? I need to be NPO until 1pm?”

Imaging:  “Oh is that a problem?  Are you diabetic?”

Me: “No, I’m just human,  What do we have in the morning?”

Imaging: “Well we have one next week at 8 am”

Me:  “That’s mine, sign me up, see you then, have a nice day!”

Okay now I can be a tough one with anyone else.  If I need to have surgery and the only time we can do it is in the afternoon fine.  But if I need to have a test, that has more than one time to schedule it, I think morning would be best for everyone involved.

For those of you who have not had a PET scan before here’s how it works.  You check in and wait for a little while.  Then they take you back and check you blood sugar.  As long as that is okay they set up your IV and then bring in the lead box.  That’s right lead box. Nothing quite as intimidating as watching them take a little vial that they’re going to inject into you out of a BIG LEAD BOX. I’m used to it now but the first time was not fun.  Then they inject you and you have to lay still for an hour to allow the radioactive tracer time to get to where it needs to be.  Then you go in for your scan, and away you go.

This is a test that you do not want a call back on.  We do this annually to look to see if any of the little cancer cells have set up shop again.  They haven’t had a chance yet and I intend to keep it that way, even if it involves the big lead box.

I won a prize!

I’m planning my first giveaway and was doing some research to see how other bloggers do theirs.  I entered one on An Island Review.  I don’t know where she gets all of her wonderful things but I have a three year old and now I think I have a birthday present for her.

This giveaway is now closed. Thank you for your participation.
The winner is Kate @ After Cancer, Now What.
Congratulations!

Girlie Girl has a new best friend and her name is Nana Star and we were lucky to have the opportunity to review 2 of her books:  Well now  the lovely Girlie Girl doll and the Nana Star book are living at my office so my daughter doesn’t get a look at them.

I can’t promise such a cute giveaway but it’s my first and Island Girl is amazing. Check out her site.

http://islandlife808.com/islandreview

Some shots of the family

I’ve come to realize that most of my readers have never met me or my family so I thought I’d put up a couple of pictures.

This is the real reason that most of us go through just about any treatment they can come up with.  There’s me, my darling husband, “Pumpkin” my son and “Lambchop” my daughter.  This was taken in November 2007 while I was using Taxol which allowed some hair to grow back in.  The kids were 6 and 2 respectively.

Doctor’s appointment

Yesterday was a follow up appointment with my oncologist. I’m on the every six month schedule now and my anxiety goes through the roof as these appointments approach. So I took a walk with Ann who was diagnosed during my treatment and breathe some fresh air and then take a Xanax!  We take turns talking each other down during these kinds of things.

Doc is pleased with my lab work and the report of how I feel. He had a resident with him today so we both spent time explaining things to her. He explained that since my tumor was 7 cm in size and 9 out of 16 nodes were positive we were very aggressive. We explained the concurrent chemo and radiation did quite a bit of damage to my chest wall and that is why we do alternating PET scans and chest x-rays. I think that was the first time I really understood it myself. Ladies, in case you didn’t know, Femara can cause increased cholesterol…YIPPEE!

I hate these appointments. I think today’s was worse than usual because we really reviewed my history for the sake of the resident.  People who haven’t been through this kind of treatment may not understand the power the words actually have. Anyway, I’m waiting for the insurance to approve a PET scan before it is scheduled then hopefully we’ll be done for another six months.  Looking forward to another date with N.E.D.  hope he’s ready for me.