Saturday, March 27, 2010

In Which I Give You a Not-So-Instant Replay

Oh, dear, I try to not make this a Cancer blog, but now and then I give a not-so-instant replay of where I have been and where I'm going. I will try tomorrow to post something of more benign interest! *smile*

Diagnosed with ovarian cancer in January 2009 during routine gall bladder surgery. Ovarian is only a tenth as prevalent as breast cancer with approx. 19,500 new cases diagnosed annually in the USA. Its symptoms are mostly silent but looking back I can recognize them. Vague abdominal things. Onset of gas. Slight but ongoing discomfort under the edge of the right rib. Abdominal bloating...I couldn't find a pair of jeans that fit. If they fit around the abdomen they gapped six inches at the waist.

Ten days after the gall bladder surgery I had debulking surgery by a Gynocologist/Oncologist (having a Gyn/Onc do this surgery is extremely important in terms of staging). Forty-three staples top to bottom. He did his job well, removing 95 percent of the visible cancer and also my ovaries (uterus was already gone in 1985), appendix, omentum, and all the usual, including scraping the nodules everywhere they had spread to surfaces throughout the abdominal cavity.

I was sorta proud of those 43 staples, telling my young(er) friends that with their metal piercings they had nothing on me! One nurses' aid came into the room with multiple piercings and I pulled up my gown to show her my own! She was duly impressed. *smile*

I'm certain (and I'm the one who should remember!) that the surgeon removed my intestines from where they resided, scraped them clean, and (for the sheer fun of it...medical people like to retain a sense of humor) tied them in three fancy surgical knots (not unlike those balloon animals tied by clowns) before returning them to my body.

I'm convinced of this little ruse on his part because my guts protested mightily and refused to do their duty. Even after bodily functions returned, they felt taut and spastic, especially when lying down at night. I recognize now that they had been freed from their original moorings and had to settle back into place (probably sending out much scar tissue in the process! Ugh). Eventually, after weeks/months, they regained a feeling of normalcy. I still like to sleep with a little tummy pillow.

Recovery from debulking surgery was difficult with a 65-mile ambulance ride one week later back to the hospital with ilius (blockage). That was a frightful thing but another 6 days had me home again.

The slow recovery from surgery delayed chemo a bit. Then because I was being placed on a clinical trial and because my veins gave me such a fit in the hospital, they put in a Power Port. (So, effectually, I had received three surgeries, one major, two minor...gall bladder, debulking, Power Port.)

Before my first chemo, and because I was on the trial, I had an MRI and CT which declared "no metastasis to brains or bones" before chemo began. That was my first "good news".

On the clinical trial I had six sessions of carbo/taxol/Avastin-placebo with many delays due to low white blood counts. That meant daily shots of Neupogen several times at our local clinic to bring my white blood count back up. For months I avoided germs like the plague. No pun intended.

The toughest part of chemo were those first months. My body was still recovering from surgery and the chemo was hitting it with heavy-duty body-slams which had me a bit wobbly on my feet and spending many days on the sofa doing my routine of "staring at the ceiling". 64 years I endured well...and was able to negotiate many daily two-mile walks with Hubby (I should call them saunters for we walked slowly) and even a few trips around our small town on our bicycles. The chemo induced slight neuropathy or tingling and numbness to the pads of my feet and toes.

Then came six months remission. My previously straight white hair came in so curly and thick some friends thought it was a wig. How's that for a laugh.

In November 09 I intuitively began recognizing recurrence...a slight discomfort under my right rib returned. That discomfort is what first brought me to the gall bladder surgeon who took photos of cancerous nodes throughout my ab cavity, including the surface of the liver. I recognized this recurring feeling and was certain myself that the nodes were returning.

My intuition was confirmed when my CA-125 began a slow rise from its bottom "norm" of 40 and reached 151 by January. I asked for and received a CT/PET (my first PET) which showed hot spots in three very small locations, including the surface of the liver. (My intuition was correct after all.)

Because of the recurrence I was dropped from the trial and the Onc was able to unblind my file. As I had suspected I was on the placebo. My chemo all along had been carbo/taxol with a placebo instead of the trial drug Avastin.

We got a second opinion at Mayo which was done very quickly because I hand-carried all my records, surgical reports, path slides, path reports, CT scans/reports, all previous blood results, everything. They gave me another complete blood work up there and I was able to have a consult. The Mayo doc visited with us nearly 45 minutes, agreeing with everything he saw prior, and discussing future chemos, going over his recommends. (By the way, by having all records with me, and needing only a current blood test, this consult cost around $450 which I thought very affordable. It was very reassuring to family doc initiated the appointment for me, Mayo contacted me with a list of what records to bring from all my doctors.)

Took the Mayo info to a Cancer Center closer to home than the trial clinic and began a new series of chemo.

I know that many in recurrence wait until their CA-125 rises to high levels or until "symptoms" or until CT scans show enlargement or until their Doc gives them a "go ahead". I know in many cases this is because of the toxicity of the drugs to their personal well-being... that they may have endured much more severe side-effects than I did. And so the decision in their case to delay a second series of chemo until symptoms become more pronounced may be the better route.

But in my case, I am happy to be on chemo again in this earliest stage of recurrence. And I'm happy to add "real" Avastin and not a placebo to the mix.

Right now I am doing the following:

Week 1 - carboplatin (carbo) 500; paclitaxel (taxol) 144; and 700 Avastin ... (plus all the other stuff...tylenol, decadron, benadryl, zantac, aloxi for prevention of nausea, inflammation, etc.)

Week 2 - just the taxol (plus the other stuff)
Week 3 - just the taxol (plus the other stuff)
Week 4 - Free week, no chemo, consult with the Onc

Then begin the series again. We will do that for at least six months, all things going well. Since beginning this new series on March 12 my blood tests have continued to show reduction in my tumor marker (CA-125).

Side-effects? Hair loss again. No aches, no pains, no side-effects other than feeling high on the decadron. Just call me the Energizer Bunny!

I seem to need less sleep than ever before in my life. Could happily do with 6 hours sleep and an occasional day-time nap. I'm certain some of this is the decadron, but I was also feeling this well during the previous six months of remission. I continue to feel well, lots of emotional, mental, physical feelings of well-being.

The trauma of that first six months and the fear of recurrence the second six months have been replaced with acceptance, humor, and "living in the moment" rather than worrying about the future. I suppose that's easy to say...I am 65. After all, I should expect some kind of potentially serious health issue at my age. But many women are diagnosed young. My heart goes out to them and I pray that they have long and good lives.

While I would (obviously) prefer not to have Ovca, I am grateful for many things:
  • The gall bladder surgery which led to my diagnosis.
  • Referral to a Gyn/Onc to do the debulking. He had nil bedside manner, but he was a great surgeon.
  • No infections of any kind after the three surgeries.
  • A faithful husband who hovered over my care.
  • Love and prayers from my dear children especially my daughters, Mom, siblings, all my family.
  • That I was diagnosed Stage IIIc rather than having waited another 6 months and gone into Stage IV with metastasis.
  • The care of good RNs, both locally and at the previous Cancer Center in Omaha.
  • That I live within two blocks of the clinic where I am receiving my current treatment.
  • That Mayo Clinic affirms my first care was excellent.
  • That this series leaves me feeling normal...better than normal.
  • That God is good, no matter what. He has caused me to rest my life in His hands and I know He walks with me wherever I go.
  • For this day. This day...Today.
My ovca cancer friend (a 6-yr survivor) gave me this scripture just before going in for debulking surgery and it was a mainstay for me, reading it over and over again in the hospital for needed assurance:

Isaiah 43:2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

I am not consumed. I live (and walk) by faith. I pray that you, too, have peace throughout your walk whatever it is and wherever it takes you. Life in this world is a hard journey and God calls us to walk with courage and faith, no matter where the journey takes us.

See...I told you this was a "not-so-instant" replay. *wry smile*


Twain12 said...

you are an inspiration and i wish you well. I can't pretend to know what you are going through but if i ever do i hope i have half the grace you do .

Glenda said...

Oh,my! What faith and courage God has given you!! Your grateful list is so wonderful, and it reminds all of us that we have much to be thankful for - no matter our circumstances.

Is. 43:2 is a special verse to me, too! And it is so true!

Thank you for your inspiring words and for bringing glory to God in your difficult times.

Kelly said...

I know you don't want this to be a "cancer blog", but cancer IS a part of your life and I appreciate you sharing all this here.

Your faith and attitude are such an encouragement!

Mrs. Spit said...

thanks for sharing that!

Caroline said...

What a story! I am glad to see you went with your gut (pun intended) when you thought it was a recurrence. We know our bodies best and need to pay attention to them. Hang in there!

Gregg said...

Now the hard part! How do you chose seven fellow bloggers out of all those who have been a blessing to me! So, I have decided to nominate and award the following seven bloggers with The Beautiful Blog Award.

3. Whitestone from Wanna Walk Along? -she is an amazing woman in a tremendous battle with cancer, yet is positive, interesting, and I enjoy reading her posts.

S. Etole said...

God is with you ... for sure!

Debbie said...

Thanks for sharing this! And it is a gigantic bummer about the hair. But, you would rather lose the hair, I think, and have the chemo at this point.

Marydon Ford said...

G'day sweetie ~ Without God I don't know how anyone can walk on ... He has held me up medically many times.

I hope that everything continues to improve for you ... you are one truly remarkable lady.

Have a beautiful Palm Sunday!
TTFN ~ Hugs, Marydon

Elle Bee said...

Your writing has a quality about it that I love. I think it's the straight-forward, honest approach, with the little bits of humor tucked in here and there. Love that your intestines were tied up like a balloon dog. :o)
I'm so glad you're having feelings of well-being. No doubt that's our heavenly Father's hand upon your daily life.

melissa said...

Hey Judy...keep up with the updates, and it's so good to be reminded of your history this past year or so.

It's encouraging/informative to know how you suspected that something was wrong. Seems to be so easy to get scared with physical twinges, and to read about yours is an education.

Hope your weekend is sweet. :)

Laurie M. said...

Thanks for the update, and the summary. You've taken a long road pretty fast. I'm glad this round is so easy for you. What a mercy that is. You are a blessing to us. I pray the Lord gives you many more years. Some day I would like to hug you and sit across a kitchen table laughing.

Sheri said...

Hope everything turns out well. God Bless

Diane said...

A faith that is deepened, strengthened and that serves to inspire others are awe-inspiring results of your trials.

Is. 43:2 is wonderful, and I love the reminder - the sure promise in verse one of the same chapter: But now, this is what the LORD says— he who created you, O Jacob, he who formed you, O Israel: "Fear not, for I have redeemed you; I have summoned you by name; you are mine..."

Teresa @ Grammy Girlfriend said...

Not sure the first comment went through...but you are a WINNER at my send me your name and address and your cards will be on the way...


Debby said...

I have often wondered how people grapple with these things if they don't have faith. I heard that an elderly man from our church has a mass on his lung. He came to the store today, and I whisked around to give him a hug. We talked briefly, but you know, we concluded that times like these are why we are in church every Sunday. We are not bound by our physical situation.

Karen said...

Thinking of you and praying for you! Thanks for sharing, and for encouraging!

Tina said...

Great post! Love the details and the humor! I also love that you let your faith shine through.
I hope (and pray) that the chemo coninues to go easy on you.

Lisa said...

I came by from Gregg's at Gospel Driven Disciples. I love your positive outlook and I know it's because you have a God that has promised to never leave you or forsake you!


Daria said...

You are an inspiration ... thank you for that.