CDC Symptom Diary Card

Tuesday, April 20, 2010


I just posted a little blurb about the outrageous costs of medications on Facebook.  Not enough space allowed on Facebook to go into detail, so here I will explain what I meant.

In January, the cancer center started injecting me with neulasta instead of another immune system enhancing drug.  Neulasta was great, it lasted three weeks.  What they didn't mention is that neulasta costs over 7 thousand dollars per injection!  My 24 hour stay at the hopsital for Cisplatin cost less than my neulasta injection. 

Thank God a million times over for insurance, but I do have to pay a portion. 

I needed the injection, there is no dispute.  I have been in a fog for the duration of my chemo.  As the fog clears, I am becoming more and more aware of nuances, wondering why I never even inquired as to the medication's cost.  Usually I do ask about costs.

Well, anyway, Congress really needs to find a way to pressure pharmaceutical companies to make their medications more affordable.  They really have an advantage. Like being the only water pump in the Sahara desert, supply and demand rule.

My gratitude remains strong, just experiencing a little irritation.  Here's to better days. 

Wednesday, April 14, 2010

Lighter mood today

Today is a brilliant and beautiful day.  Sunshine, warmth and flowers fill my view.  Today I went to have my port flushed (the port is like a permanent IV access point on my chest wall).  It felt good to be able to wait in the lab waiting room and not be totally anxious and fearful.  I was relaxed with the half hour wait, watching others, wondering about their stories.  I saw people prepping for chemo, some not.  Some were anxious and upset about the wait, others quiet and motionless.

I met with the social worker afterwards so that she could help me with some much needed paperwork.  The one thing that will ring true for all people with cancer is that managing your cancer is a "job" indeed.  I have invested a lot of time and energy into organizing and keeping up with invoices and insurance statements as well as documenting all events associated with my illness.  When chemo has it's claws in you, it is a real challenge to find the energy to open the mail, believe me.

So anyway, the social worker was very nice and she plans to help me as much as she can.  I made an extra effort to thank her again and tell her that the cancer center's staff are angels, just pure angels. 

Chemo really puts you in a deep fog and takes your soul away, your energy, your spirit seem to all disappear.  I am not fully back together but feel so much better. 

A few weeks ago I received a handmade "get well" card from some children that attend my church's school.  I purchased a thank you card today.  I feel bad that I hadn't sent it yet, but the truth is that sometimes the smallest responsibilities and activities have at times felt like trying to run in quicksand.  I want them to know how much I have appreciated their kindness.

I also borrowed a book from the cancer center library that talks about how diet and exercise can help prevent breast cancer.  I figure that since I need to eat healthy and exercise anyway, I just as well follow a useful program.  Unfortunately there looms a doubt that I will live to see any breast cancer because my chances of an ovarian cancer relapse exceed the risk of BC.  Not to be a downer, it's just my reality.  As a matter of fact, as my body heals more, it seems that I am a wee bit more able to deal with "odds" and "risks".

Only God knows when we die.  I really believe that I am here for a specific purpose.  God has saved me so many times before.  I am feeling the urge to really tap into and exercise this unknown talent, and use it.  It will come and it will happen.

For today is a bit better than yesterday and who knows how tomorrow will go.  Here's to that tomorrow will be.

Tuesday, April 13, 2010

Unexpected complications

It has been a while since I have posted.  I think I am slowly improving, in spite of the hiccups along the way.  For starters, I had the great joy of being able to walk my niece to school last Friday.  It was just a few blocks, but I truly was not sure I could do it.  It was cold, a little hilly, but worth it.  Addie is just a sweetie.  Mom was baking cookies with Laria while Patrick and Mandy were at Mandy's doctor appointment.  Bless her heart, she is dealing the the BRCA 1 challenge so well.  She doesn't dwell on it.  She and I have important decisions to make down the road, because the threats are real, but we have to live now.  I went with her on her MRI/mammo appointments on Monday, she did so well.  So I will be praying for good news on the results and ask everyone to pray for her.

I was told yesterday that I have intermittent bowel obstructions, happy day.  I know it's kind of gross to talk about all this but my internal problems are not really going away.  This past Saturday I had another episode and got real sick, and I don't have the flu.  After reading up on the subject, the only real "cure" is surgery.  Intermittent bowel obstructions are when part of your intestines twist and block your body from moving nutrients etc through your tract.  I was reading that "IBO" is a complication of major abdominal surgery as well as appendectomies. 

So now I am wondering if I should go back to a more liquidy diet, drinking health shakes for dinner etc.  I have no idea how or if abdominal exercises help or hurt.  This is a structural problem, my netting is gone.  I was warned by my internist that this could happen, but had no idea if it really would.

So, anyway, not sure how I will deal with it because it seems like there's really nothing I can do other than surgery when it occurs.  It can be life threatening, so there's another looming black cloud hanging over my door.

The good news is that I think Paxil is helping some.  I don't have as many really bad worrisome thoughts as I used to.  The weather is slightly better, flowers and trees are in bloom.  We need to pull weeds and start on our garden.  There are good days to be had and I am still trying to hear God's calling.

The irony is that my latest "IBO" episode started at Church.  Two patrons were so helpful to me, so helpful.  Thank God I was able to drive myself home. 

I still believe there is a place for me in the capacity of an advocate, helping women and primary care physicians become more aware of the mixture of unassuming symptoms that combine in the form of deadly ovarian cancer.  There is nothing that can be done about the BRCA 1 mutation, but my cancer could and should have been identified earlier.  I have forgiven my doctors for ignoring my complaints, but still feel the need to "do something" about it.  Worrying about possible breast cancer is too much to confront at this time.

I'm starting to open my mind to possibilities, and hope that something comes to the surface.

My niece Shelby has her 10th birthday in a few weeks, along with Aunt Deb.  That's exciting.  Laria is coming back with Mandy sometime this week so grandma can teach her to paint.  How fun will that be? 

Oh, my insurance denied coverage of my breast MRI.  Just found that out a few days ago.  So, I'll deal with that when I get the bill from the cancer center.  Mildly frustrated in that I thought they were going to pre-authorize the procedure.  I guess I was supposed to do that.  Maybe they will give me a discount.  If not, then I should look into the Susan G. Koman foundation, I think they have financial resources to help women with BRCA 1mutation pay for their MRIs.  To be honest, I am just so grateful that I had the MRI.  It will work itself out I hope.

Bye for now.