My Letter

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I am a patient with follicular non-Hodgkins lymphoma. I was diagnosed when I was 29 years old and have received treatment three times in 7.5 years. Just last month, I found out the cancer is back again. My husband and I have a four-year-old son.

I am contacting you regarding a CMS ruling that will have a devastating effect on the survival of patients with lymphomas. The ruling is contained in CMS-1392-FC as it relates to Bexxar and Zevalin.

If this ruling is not reversed, patients in need will be denied access to a life saving therapy, and future patients will be denied access to Bexxar or Zevalin and similar targeted drugs.

The last time I was treated for my lymphoma in September of 2005, I received Bexxar at Stanford. It was by far the easiest treatment I have endured and it gave me 23 months of remission. When my oncologist told me I was relapsing, my first thought was to see if I can receive Bexxar again; if not, Zevalin.

To find out one month after my biopsy that both Bexxar and Zevalin are at risk of becoming inaccessible to me and thousands of other lymphoma patients leaves me feeling more hopeless than at any time in my 7+ year cancer journey. It is hard enough to get a cancer that typically strikes an older patient population (60s and up), it was hard to go through chemotherapy with a five-week-old newborn as a first-time mother. It has been hard relapsing twice since giving birth. But my husband, son and I get through these challenges with the support and love of our family, friends and amazing doctors.

This CMS ruling leaves us in anguish. Forget all the insurance woes we have dealt with and the financial repercussions of living in a high-cost of living state coupled with a serious medical condition at such a young age. To know that even if we could come up with $25,000 to buy Bexxar ourselves, we will not be able to have access to this drug, that is unthinkable.

Are the folks at CMS going to come explain to my son that Mommy has to receive standard chemotherapy and be sicker than ever when there is cutting-edge therapy on the market like radioiummontherapy? I think not. Do they understand that my form of lymphoma has had standard therapies for over 40 years and is classified as incurable with those standard therapies (i.e. traditional chemotherapy)? Do they understand that unless we support and encourage the research for these novel therapies like Bexxar and Zevalin, I face an uncertain future. At least with RIT, there is hope. They are taking away my hope.

Even the medical experts cannot believe this ruling, and that RIT is being called "diagnostic" which is a bold lie. ASH (The American Society of Hematology) has written: the CMS ruling will have “a chilling effect on the development of future drugs and radiopharmaceuticals for treating other forms of cancer and other diseases.”

ACTION NEEDED

I respectfully request that you take all necessary actions to reverse CMS-1392-FC as it relates to Bexxar and Zevalin.

For background on the consequences of this ruling to patients, please see the Newsweek article of Nov 14: (http://www.newsweek.com/id/70301).

With great sincerity,
Jessica Nichols

Another Way

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Many thanks to my good friend Lara who sent me these steps via email that makes it very easy for CA residents to dash off a quick letter to their senators.

1. Copy the text below into memory (highlight the letter below, then Edit, Copy)

2. Open a browser window for each senator (see below for links):

3. Paste the text into the email (Edit, Paste)

4. Personalize the text as needed, then send the email.

5. Receive boundless gratitude from me!

Text of Letter :

I am a patient with lymphoma [or a caregiver, or loved one, of a person diagnosed with lymphoma.]

I am contacting you regarding a CMS ruling that will have a devastating effect on the survival of patients with lymphomas. The ruling is contained in CMS-1392-FC as it relates to Bexxar and Zevalin.

If this ruling is not reversed, patients in need will be denied access to a life saving therapy, and future patients will be denied access to Bexxar or Zevalin and similar targeted drugs.

Also as ASH (The American Society of Hematology) has written: the CMS ruling will have “a chilling effect on the development of future drugs and radiopharmaceuticals for treating other forms of cancer and other diseases.”

ACTION NEEDED

I respectfully request that you take all necessary actions to reverse CMS-1392-FC as it relates to Bexxar and Zevalin.

For background on the consequences of this ruling to patients, please see the Newsweek article of Nov 14: (http://www.newsweek.com/id/70301).

Sincerely,

Your Name
Address
City, State Zip


Quick Links to CA Senators:

Boxer, Barbara- (D - CA) Class III
112 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-3553
Web Form

Feinstein, Dianne- (D - CA) Class I
331 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-3841
Web Form

A Little Easier Than a Letter

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I know that if I am even overwhelmed trying to compose a letter to my elected officials, those of you without the cancer are having a hard time too. My message board to the rescue!

Judy posted the following idea:

If each of you will send your comments to bdeparry@gmail.com, she will print them and get them to Washington. The more comments we have, the more impact we have – so I beg each of you to voice your concerns and to ask everyone you know to do likewise.

The email account is bdeparry@gmail.com.

Please write “CMS-1392-FC” in the subject line. Your message does not need to be long. Feel free to write whatever you wish, and if you aren’t certain what to write, simply copy and paste the following:

I respectfully request an immediate reversal of CMS-1392-FC as it relates to Bexxar and Zevalin.

Please sign your name and include your city and state.

Your information will not be shared with anyone else. It will only be used for the purposes of lobbying our politicians to reverse this ruling.

I have no idea who "bdeparry" is but thank you from the bottom of my heart!!!

Hopeless

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I am often asked how exactly do I deal with all the cancer stuff?

It's a complex, yet simple answer: I simply do because what choice do I really have? Some days I do it more gracefully than others. This year's therapy sessions have certainly been helpful in managing the stress and fear. I don't really acknowledge the fear very often and even more rarely do I allow myself a full-on pity party.

But this Newsweek article, this piece of news that is worse than the NYT article I blogged about a few months ago? This makes me fall into a big heap of pitiful emotions.

I have a migraine and so I can't even let myself weep because it will hurt too much. Who are these people with the cavalier attitudes and all the power to make totally insane decisions that affect hundreds of thousands of people? "Diagnostic?" What? WTF? What are they talking about diagnostic?

It's upsetting enough that Stanford says "No one has given Bexxar twice" when I asked if I can get it again. Never mind that in Australia, I know for a fact, you can get it not once, not twice, but THREE times if you want it.

Now here, in the U.S., some people might not EVER get it. And where does that leave me? If you're 60 or 70 like most people who get follicular lymphoma, and you start on this journey of mine and get 10 or 20 years more from various treatments, well it's never enough but at least you started out 30 or 30 years ahead in the life cycle than me.

That's all I'm saying.

This is so UNFAIR!!! All of it! UNFAIR and WHY ME, why anyone but let me have one little moment on the record to say WHY ME. It just all makes me sick. I am so over asking my people to write a letter for me or donate to that. What difference does it make anyway?

My Morbid Child

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This morning was Jaden's first field trip, his whole group plus teachers and lots of parents made the trek across Bascom Avenue to Le Bou (as Betty always calls it). We all held hands and Andrea ordered a loaf of fresh white bread to be sliced for the kids to try. We sat around a fountain so they could eat their bread, then joined in a circle and sang a song before walking back to school.

Upon our safe return, we again got in circle formation (or the kids did) and Andrea asked each child what they liked best about their trip to the bakery. Child after child said "the warm bread!" with much gusto and enthusiasm.

And then. Jaden's turn came.

"What did you like best Jaden?"

"I thought we were going to a graveyard but we didn't."

Silence. All parents look my way. I shrug helplessly.

Ellen says, "Really? A graveyard?"

"Yes, Andrea said we were going to a graveyard."

Andrea says "Hmmm. That's interesting. I think I said bakery."

Bless their hearts, they (Andrea and Ellen are so supportive of every unique child in their care) say "You look disappointed. Are you disappointed?"

"YES."

"We'd really like to hear more about this later Jaden."

Um Yeah.

Me too!

Hormones

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They are the ONLY possible explanation for the stupid tears running down my face watching Celine Dion make this red-headed freshman chick happy on Oprah right now.

(c) The Oprah Winfrey Show


OMG, I am mortified. The only way I will listen to Celine is if she is singing 100 percent in French, is there even an all-French cd out there?

Help me! Where's the damn chocolate anyway?

P.S. I must admit how surprised I am during her intereviews by how down to earth she is compared to her super sappy songs.

Buzz Buzz Buzz

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Today I did a high-dive from my coffee pot.

Normally I am a strict one-cup a day girl. If I indulge in a second cup, it's usually hours and hours later and then decaf or at most, half-caf.

But today I am sleepy. The kid is home for the second day in a row due to his schedule and Veterans Day. And the writing needs to get done.

So I drank my one cup and then the half cup of overage that I make every day in case I overdo my half-and-half.

But somehow, somehow, it wasn't enough.

So I brewed a SECOND round.
And drank ANOTHER cup.

And now I'm buzzing around and around and around, which is quite a feat considering I'm sitting down!

Which of course, brings Laurie Berkner buzzing around in my head.


BUZZ BUZZ BUZZ!

My Little Frenchie

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After Jaden's spontaneous "Je t'adore" on Friday, I decided tonight to offer him another phrase, "Je t'aime" as I was tucking him into bed. He repeated it perfectly. Okay then, "Je t'aime toujours" -- again perfect pronunciation.

I couldn't stop myself after that, so we had French 101 before bed.
My goodness the boy has an ear for this, every time perfect repetition after hearing it once.

"Comment ca va?"
"Ca va bien, et tu?"

"Il fait froid."

"J'ai faim."

"Je m'appelle Maman."
"Il s'appelle Papa."
"Je m'appelle Jaden."

Then I started showing off for my boy, I couldn't help it.

"Jaden? Je vais parler en francais avec toi maintenant."

I ended the lesson with "Bon nuit."

Now he's in bed and I'm looking up our favorite lullaby in French:

Vous êtes mon soleil, mon seulement soleil
Vous me rendez heureux quand les cieux sont gris
Vous ne saurez jamais cher, combien je t'aime
Veuillez ne pas enlever mon soleil

I can't wait to sing it to him! I'm going to try to memorize it.

How To Sit Still

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I am reading this neat list of 100 things and I am struck by #77.

How To Sit Still

1. Put down everything in your hands.
2. Find a seat that you like and is comfortable.
3. Find something to look at that is interesting.
4. Do not jiggle or wriggle your body.
5. Hold your hands if it helps.
6. Take a deep breath.
7. When you get antsy, take another deep breath.
8. Remember, you are not going to sit here forever.
9. Feel proud of your self-discipline right now.
10. Enjoy the sights and sounds that you are not participating in.
11. Repeat as often as necessary until you are good at it.

Another Doozy from a Doctor

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What is it about a white coat that gives some people the impression they can mouth off?

Today's doozy brought to you by an EYE doctor.

"How many kids do you have?"

"One."

"Oh you're being lazy."

(I think, wait I need to go straight to have my ears checked after this because I'm obviously not hearing correctly).

"What did you say? I couldn't understand you."

"You are being lazy, only one kid."

"No actually we'd love to have more but my doctors won't let me."

(I figured this, while technically incorrect, would shut her the f@#% up.)

"Why?"

"Because I have cancer."

(Surely NOW she will shut the f@#% up.)

"Well how many did you want to have?"

"Two would have been just fine for us. It's not like we wanted 10 or anything."

(Why is she still talking to me about this? Why am I answering her stupid questions still?)

"I guess one for you then. One is good. I think kids are way too much work so I don' t have any."

"Well at least you know your limitations" was the best response I could come up with in my state of shock. More like, thank the universe you don't have to be responsible for caring for tender little children with lame, thoughtless comments like you obviously make all the time.

GRR!

ETA: Upon much further review of the conversation, I wish I had been witty and quick enough to say something along the lines of laziness has nothing to do with anything when it comes to parenting. WTF does she know about laziness if she doesn't even have any kids because she thinks they're too much work?!! I cannot believe I participated in this conversation with her. Boo on me.

re·prieve

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-- noun --

a respite from impending punishment, as from execution of a sentence of death;
a warrant authorizing this;
any respite or temporary relief.


Today was the infamous follow-up appointment with Dr. Chen. Before I even asked, she offered to monitor the situation for now with scans on a three-month schedule, next one slightly delayed past Dec. 28 to Jan. 10th, so I can have a reprieve to enjoy the holidays free from the madness otherwise known as cancer.

She asked about the biopsy and I told her straight up how horribly the surgeon treated me. She was very dismayed. She said the surgeon's comments to me when I paged her over the weekend with that high fever were "inappropriate" and asked if I had called her office. I said, "No, you were gone, what was the point? My primary and I handled it via telephone."

She had the pathology slides sent to Stanford for verification and there was a slight adjustment to what Good Sam found, having to do with cell-type but it wasn't even an error I noticed. This just goes to show everyone I am not ACTUALLY a doctor, just a fairly educated patient, although lately, not so much. My reputation is resting on its laurels these days.

For those who care about the technical details, Good Sam classified me as grade 1 and historically I have been grade 2. This is different from staging which tells you how much cancer you have in your body. Grading refers to the behavior of the cancer cell. So when my doctor saw grade 1 on the path report, she thought that was odd and she was right. I am grade 2 as usual.

She did again introduce the dirty "T" word (I'll say it once and not again until I'm forced, transplant). She wants me to go talk to her best friend at Stanford who is in their transplant dept. I pretty much skirted the issue except to bring up the fact I know folks who have gotten them and are on life support after struggling with GVHD (graft vs. host disease). Sure the CANCER is gone but they can't BREATHE on their own anymore. Great. Sign me right up.

For all those suggesting alternative therapies, she greenlights acupuncture but hesitates on herbs. Fine by me, I can't stomach the herbs anyway. But I'm game to try acupuncture now.

That's it. For now, it's going to be out of sight, out of mind.
At least as far as I can help it.

Bring on the holiday season.
HO HO HO.

True Comfort in a Box

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I was at Costco the other evening and I seriously heard people raving in this one aisle, so I meandered over to see what the fuss was about.

Customer 1: "OOH I have heard these are so good."
Customer 2: "Yes they are so good, I've had them before."
Employee: "Yeah, these fly off the shelves all the time."


So after they all cleared out of my way, I did my auto-flip straight to the ingredient list, which passed my tests with flying colors:



And we made them last night. In less than five minutes. And they passed the taste* test* with supersonic colors. YUM. YUM. As Ray Ray would say.

Edited*: fixed a couple of typos, duh. (I am blogging this edit because I read in Blogging for Dummies that it's poor blogging form to edit a post without explaining it).