First four days of Xeloda

By Sarah

I started my new chemo treatment on Friday morning, it was so easy. I took three pills and bam I was done! No trips to the hospital no sitting in a recliner for 4 hours. No hospital cafeteria food for lunch. It was a breeze. It’s a scary thing though taking a drug for the first time not knowing how it will affect you. Wondering if you are allergic or not. But I did really well. I was able to eat a nice dinner and really enjoy tasting it. It was a good Friday.

On Saturday we all piled into the car and headed out on a trip to visit a college for Miss H. I took My pills along and after stopping for a donut and some coffee I downed my next morning does of my medication. We arrived at our location and went through the open house without a hitch. I walked the whole campus (slowly but I did make it the whole way) and after we were finished we headed towards home and a birthday party. Now two weeks ago I would have not been able to go but I got to go this time. It was so nice to get out and do something not involving driving to the hospital. I enjoyed dinner and had a nice big piece of birthday cake. It seems that my appetite has returned and I am enjoying sweets, and other things that I did not have interest in eating before.

We spent a quiet day around the house on Sunday, Laundry, Football games and homework were the main events. I was a bit tired but not as sleepy as I usually am on the weekends. This morning I am feeling pretty good and am still drinking coffee. Which you know makes me very happy.

So far the only side effect I have is a bit of bone pain but Motrin takes care of that. I am back to cooking and cleaning a bit too. From what I understand I will probably have more side effects in my next cycle, but for now I am enjoying evey minute of feeling pretty good for now.

Did you see this?

I just wanted to make sure everyone saw this article about financial assistance for cancer drugs.

Here’s the upshot… need help with co-pays or Rx?  Look to these companies and organizations.

• Genentech: http://www.GenentechAccessSolutions.com

• Novartis: http://www.patientassistancenow.com

• Patient Advocate Foundation, 800-532-5274 http://www.patientadvocate.org

• CancerCare, 866-552-6729 http://www.cancercarecopay.org

• Chronic Disease Fund, 877-968-7233 http://www.cdfund.org

• Healthwell Foundation, 800-675-8416 http://www.healthwellfoundation.org

• Leukemia & Lymphoma Society, 877-557-2672 http://www.LLS.org/copay

• National Organization for Rare Disorders 800-999-6673 http://www.rarediseases.org

• Patient Access Network Foundation, 866-316-7263 http://www.panfoundation.org

• Patient Advocate Foundation, 866-512-3861 http://www.copays.org

• Patient Services Inc., 800-366-7741 http://www.patientservicesinc.org

I Want So Much to Live

I was lucky enough to see this new documentary at The Boston Film Festival this week called “I Want So Much to LIve”.  It is a beautifully done film about the invention of Herceptin.  This short film  highlighted the young scientists of Genentech who made it their mission and passion to get this drug perfected and approved.  It was these young kids in California who figured out that something was odd in the breast cancer world; they wanted to know why after treatment some survived and some didn’t.  They figured out that 20% of all breast cancers were fed by the her2 protein and then went about finding an antibody for it.

As I was diagnosed to be her2/neu positive in 2007– 4 years after Herceptin was approved– I was lucky enough to receive this drug.  The story touches on the women who were not so lucky, who wrote letters pleading with the drug companies to let them have this new drug that was available. The film explained the clinical trial process and how a drug gets pushed through the FDA–giving us both sides to the story and showing how there was no real ‘bad guy’ because everyone was working toward the same goal–finding a safe and effective drug against breast cancer.

What struck me most about this documentary was the unbelievable commitment of these scientists to prove that Herceptin was worth the companies time, money and effort.  They knew in their hearts that this was an important step in helping to cure cancer, and they would not take ‘no’ for an answer.  It also amazed me that it was only in 2003 that this drug finally became approved, and that had it not, I would be in a very different situation right now.

You should definitely see this film if it comes to any of your cities. It made me feel like all the walks, runs,and bike rides we do to raise money for research against all cancers is actually doing something.

Here is the link to the film’s website index.html

Laughter is good medicine

Cancer is no laughing matter but you’ve all heard the saying, “Laughter is good medicine.” Turns out that’s actually true – laughing releases those “feel good” chemicals in our brains. When everything around you is swabbed with rubbing alcohol, when you find yourself bald and on hold with your insurance company for 97 minutes at a time…when you’re so angry that you wanted to be the room mom at your child’s school but you’re sitting in the chemo chair instead…when there is nothing but heaviness and gloom to be had – perhaps a little giggle will lighten your day!

Here’s a classic medical joke that I saw taped inside the Gamma camera machine when I had a scan in October 2007. It was funny to me even then as I faced my new life as a woman living with stage 3c breast cancer. Here it is today – September 2010 – almost 3 years later and I’m going strong. And I still think it’s funny.

Looking back on that day, I could have chosen to cry at my condition and no one would have blamed me. But I’m glad that on that day, in the middle of the unknown, I chose to laugh. Whoever taped this list inside that machine – thank you for lighting my trial. Maybe it’ll do the same for you!

(I titled it “Elvis has an Evil Twin too” as I have a twin whom I love to tease!)

It was a cruel, cruel test. “Lay still,” they said positioning me under the Gamma camera yesterday. But right above my eyes, this joke was taped to the machine. “Lay still?” I almost wet my pants!

Backwoods Medical Terms

Artery………………….The study of paintings.
Benign………………….What you be after you be eight.
Bacteria………………..Back door to cafeteria.
Barium………………….What doctors do when patients die.
Cesarean Section…………A neighborhood in Rome.
Catscan…………………Searching for Kitty.
Cauterize……………….Made eye contact with her.
Colic…………………..A sheep dog.
Coma……………………A punctuation mark.
D&C…………………….Where Washington is.
Dilate………………….To live long.
Enema…………………..Not a friend.
Fester………………….Quicker than someone else.
Fibula………………….A small lie.
Genital…………………Non-Jewish person.
G.I.Series………………World Series of military baseball.
Hangnail………………..What you hang your coat on.
Impotent………………..Distinguished, well known.
Labor Pain………………Getting hurt at work.
Medical Staff……………A Doctor’s cane.
Morbid………………….A higher offer than I bid.
Nitrates………………..Cheaper than day rates.
Node……………………I knew it.
Outpatient………………A person who has fainted.
Pap Smear……………….A derogatory common against your father.
Pelvis………………….Evil twin to Elvis.
Post Operative…………..A letter carrier.
Recovery Room……………Place to do upholstery.
Rectum………………….Darn near killed him.
Secretion……………….Hiding something
Seizure…………………Roman emperor.
Tablet………………….A small table.
Terminal Illness…………Getting sick at the airport.
Tumor…………………..More than one.
Urine…………………..Opposite of you’re out
Varicose………………..Near by

Answering “How ARE you?”

When I was first diagnosed with cancer‚ everyone asked me‚ “How are you?” As if troops were gathering to wage battle against my fear and loneliness‚ “How are you?” became a comforting codeword for “I’m on your side.”

But within a few weeks‚ the chemotherapy began to take its toll‚ the shock and novelty of being a patient wore off‚ and I came to dread being asked‚ “How are you?” This question undermined the distraction and healthy denial that minimized my distress.

If I answered truthfully‚ I had to absorb the hints of disappointment‚ anger‚ frustration‚ sadness‚ fear‚ and helplessness that splintered others’ words of comfort. I found myself consoling those who asked‚ and then fighting the contagion of grief and fear. Even when the news was good‚ I didn’t have the energy to include all the people who wanted updates.

After my treatments ended‚ the prickles of “How are you?” sabotaged my attempts to move on. One day I spilled my frustration to my good friend‚ Debbie‚ “People keep probing! They don’t say‚ ‘How are you?’ but ‘How ARE you?’” Debbie suggested that I was being oversensitive. “It’s just an everyday greeting. Maybe they don’t mean anything by it‚” she said gently. Not buying her argument‚ I explained how I’d answer‚ “fine‚” and they’d double-check‚ “Really?” their eyebrows raised and their chin dropped ever so slightly. I told Debbie how one of my colleagues came over and asked the usual. Despite my enthusiastic‚ unequivocally positive response (“GREAT!”)‚ he then asked‚ “Are you still in remission?” “No‚ it was not my imagination. People weren’t simply saying “hi‚” they were asking for my latest scan results.

No matter how it was intended‚ being asked‚ “How are you?” rattled my heightened sense of vulnerability by virtue of its literal meaning and my sense of not knowing how I was. My desire to be polite often battled rising confusion and panic as I thought‚ “I’ll find out when I have my check-up.” I told my friend Debbie‚ “I wish they didn’t ask.”

Debbie took their side‚ “Wendy‚ they are asking because they care about you.” She then listened patiently and tried to understand as I shared my struggle to find a “new normal” after cancer‚ one that included persistent fatigue and frequent doctor visits. I suggested she say‚ “How are things?” or “Good to see ya‚” adding‚ “Don’t walk on eggshells‚ Debbie. When‚ out of habit‚ ‘How are you?’ slips out (and it will)‚ don’t worry about it. I won’t take your question literally unless I want to.”

That offhand last comment led me to the key to surviving “How are you?” When friends ask‚ I can respond whatever way works for me‚ trusting that the person wants to “be there‚” whatever “be there” means that minute.

With my answer‚ I can share the truth about survival: Some days are good‚ some bad; sometimes I need to escape‚ sometimes I need to talk it all out‚ sometimes I need to be held‚ other times I need space‚ and I’m not always sure what I need (so they can’t know‚ either). I’m learning to recognize when “How are you?” is meant as nothing more than “hello.” Occasionally I screw up and start to give a detailed or philosophical answer to someone who really doesn’t care or doesn’t want to hear. That’s OK. And I forgive all the people who say the wrong things. I’ve said a lot of stupid things in my time. As for the rubberneckers‚ I tell them “I’m fine.”

“How are you?” is not an intrusion‚ but the glue that holds Debbie and me together. Our initial responses‚ both verbal and nonverbal‚ telegraph if one or the other has news or problems or worries to share. We know within seconds if one is in need‚ even if that need can’t be met at the time. And‚ I was mistaken when I thought that I didn’t know the answer. Although on any given day I may not know what my next scans will show‚ I do know how I am. Cancer tuned me in to my body and clarified who and what are important in life. If anything‚ after cancer is when I started to really know how I was.

“How are you?” may never again have that innocent sound because I can’t go back to the way I was before cancer. That’s good. In letting others care for me‚ I’ve learned about caring for others. Whether I’m anxiously awaiting a check-up‚ or undergoing another round of treatment‚ or enjoying a blessedly ordinary day‚ Debbie’s three little words‚ “How are you?” stir emotions because they are powered by three other little words: I love you.

[I wrote this many years ago. Ever since, I've had no trouble with the "How-are-you" question. This supports the idea that sharing and working through something in my head -- or with someone who cares -- makes a difference, even when the circumstances remain the same.]