cancer: October 2009

Saturday, October 31, 2009

WCK was up at the crack of dawn this morning; technically, I'd say it was before the crack of dawn since it was still pitch black outside. She's beside herself with excitement over Halloween. She's already running around in a witch's hat, and she told me I should make something called "Eyeball Casserole." I Googled it, and it is a real thing (you use balls of cheese as the eyeballs), but WCK announced that she has her own recipe, and she wanted me to type it up:

One spinach
One carrot
One egg
One apple
18 eyeballs
Stir and mix
Put it in the oven for 10 minutes.
When the oven rings, then it is done.
It will look slimy and good to eat.

Friday, October 30, 2009

My off Friday

I was off today as we work 9/80 schedules on the job. For the first time in a long time I don't have to go to class, I am off, I am free, I don't have to study, the day is mine...eh not really, but it sounded good.

Get the girls ready and off to school
Take my truck and get the tires rotated and balanced
Pay some bills and run some errands
Start some laundry
Take my wife's car to get the tires rotated and balanced
Go home and make two lunches
Eat lunch with Raegan and DOMINATE the class during recess afterwards
Hurry over to Ravyn's school and listen to story time and have lunch and talk about Halloween costumes with the pre-schoolers
Run some more errands
Get some snacks for the after school day care party
go to the party (yes I was late)
Hurry home to meet the cable guy, getting some more football channels "duh duh du duh"
Go back to the school and pick up the cookie order (they couldn't find it)
Go home wash more clothes
Go back to the school and finally get the cookies
Pick up the girls
Bake pizzas with the girls
Eat, watch noggin and take it easy it is Friday
Get ready for the soccer game on Saturday

Need a nap

Bad blogger!

I haven't been blogging much lately, and I don't really have a good excuse. I've been a little ticked off at my M-spike, but I shouldn't take it out on my poor blog. To make amends, I went a little crazy and signed my blog up for National Blog Posting Month. This means that through the entire month of November, I have to post every single day. I've registered my blog with http://www.nablopomo.com, so if I meet my goal, I will be eligible to win some fabulous prizes. Really, they aren't that fabulous (the best prize on the list so far is a "Sock Zombie", which I guess is like a sock monkey, only it's ... a zombie), but they're still prizes.

This new goal means I am going to have to make room in my hectic schedule for daily blogging. This means cutting out other important stuff in my day, like my compulsion to check Facebook every five seconds to find out that people I barely remember from high school are playing Mafia Wars. It's going to be tough, but I think I can do it. I really want that sock zombie.

BOURBON COUNTY STOUT 2009-ONLY 1 CASE!!!

It's going fast! Quick! Get it while you can!

dave

Horrors! Woman touches own breasts on TV!

{Sorry--I couldn't figure out technically how to capture a still of the woman examining her breasts. It is much less sexy than this stock picture from photosearch.com. }

It took a while, but I finally found the un-blurred video from the ABC News local WJLA in Washington, DC., which showed--horrors!--a pretty 28-year-old woman with cancer (before surgery) examining her small, perky breasts. Reporter Gail Pennybacker, thank goodness, warns us beforehand that "Images are going to be graphic." Gosh!! Nipples!! Nipples, which are obscene, are going to be shown. Lock up your women and children! Your children will be traumatized by seeing nipples! Of course, they are not affected by daily, hourly images of war and mutilation--or "action" movies and videos.
The news station brought this all on itself by happening to air this during sweeps week, when viewership is measured. If WJLA wanted to be as blameless as Caesar's wife, it would have run this earlier in the month.
Meanwhile, conservative groups have criticized this display. The AP tells us: The Parents Television Council reacted cautiously to news of the series but suggested it saw the potential for problems.

"We hope that WJLA-TV is not using a crucial public health issue as a ratings stunt, and that the station has fully considered what is appropriate to tell this important story to the public in the most suitable manner possible," the group said in a statement. That might mean different versions of the story at 5 p.m. and at 11 p.m., it added.

I wish the reaction were more outlandish so I could make fun of it. It's also annoying that that first thing that pops up on the PTC web site is a study that says that images of violence against women are on the increase on TV. Really, how can anyone find fault with an organization that cares about violence against women (at least representations of it)? If you read further, you find the organization is Mrs. Grundy-ish (Does anyone say "Mrs. Grundy" any more?) about "indecency" and cursing and sex on TV. Yeah, a lot on TV boils down to immature sniggling about sex, but that's not my most pressing issue.

It's easier to make fun of another critic, Concerned Women for America, which strives "to protect and promote Biblical values among all citizens - first through prayer, then education, and finally by influencing our society - thereby reversing the decline in moral values in our nation." But reading about them makes me more scared than sarcastic. Separation of Church and State, anyone?

[Mrs. Grundy by Walter Crane, 19c]

[not to be confused with Miss Grundy of Archie Comics, pictured at top]

Breast cancer is one thing I do think about a bit. And I was and am lax on breast self-exams. Mostly, the hoopla about the news report is serving to remind me that I need to examine my right breast, that I shouldn't just rely on the six-month mammograms and doctor exams. So ladies, go to it! See instructions and illustrations at this site.

Click here for visuals that are really adult and graphic and for which our country is to blame.

"Murder is a crime; describing murder is not. Sex is not a crime. Describing sex is. Why?" Gershon Legman wrote years ago. I know, I know, this weakens all of the above, because my implied argument is that showing a breast exam is not a smutty, sexual event, but it seemed apropos.

Xeloda – Day 4

Well I’m glad to say I don’t have much to report when it comes to Xeloda side effects. The odd time I have a gurgle in my stomach but really that is all. I’m careful to eat small non-dairy meals and so far so good.

My biggest challenge has been to eat as soon as I wake so that I can take my chemo pills shortly afterwards. Prior to this week I’d probably have my first bit of food around 10:00 in the morning and even that might just be a fruit or a bit of yogurt. The pharmacist said I should take Xeloda within 30 minutes after a meal … and a fruit just doesn’t cut it as a meal.

I was in the running for a hemipelvectomy but I chose radiation and that (thankfully) worked for the time being. Even so, the thought of becoming an amputee, even if it is just part of your pelvis, is terrifying.

I've found a great resource for those facing an amputation due to cancer:

http://www.hphdhelp.org/default.htm

They've even got a support group. Check it out!

Serendipity

Yesterday the stars were aligned for my errands. I decided to go downtown to get my driver's license renewed, after trying unsuccessfully to renew online and via the US Postal Service. The timing on this was important, since I also had to be at the hospital to get my zometa by 1 PM.

First karmic alignment: I found a parking space literally in front of the entrance to the DOL building at 1000 2nd Avenue. No matter that the entrance to the DOL office was around the corner. At least I didn't have to walk blocks in the rain.

Second karmic alignment: It stopped raining just as I pulled into the parking space.

Third karmic alignment: The reason I couldn't renew online or through the mail was because I literally needed a new license. The other types of renewals are for the sticker you place on your current license. And the photo they took wasn't so bad.

Fourth karmic alignment: I walked the two blocks to the doctor's office to try to get a flu shot since I had such a primo parking space.

Fifth karmic alignment: The doctor's office was having a flu clinic and they could take me right away even though I hadn't made an appointment.

Sixth karmic alignment: Arrived early at the hospital for zometa and was told to get some lunch, the nurses were too busy to take me early. Okay, maybe eating hospital cafeteria food isn't exactly serendipitous, but at least it's cheap.

Seventh karmic alignment: No one ticketed my car parked by the hospital even though I had technically been parked more than two hours.

Came home after zometa, took a nap (sleeping on the left side since I'd had the flu shot in the right arm), made mushroom soup for dinner and didn't have an evening meeting. Now that's my kind of day!

Thursday, October 29, 2009

New Stuff

1. Eel River Triple X

2. Eel River Imperial Stout

3. Ommegang Adoration Ale

4. Alaskan Winter Ale 22oz.

5. Mad River John Barleycorn 2008 12oz.

6. Grand Teton Howling Wolf Weizenbock 1 Liter

7. Marin Hoppy Holidaze 22oz.

8. Maui Coconut Porter cans

9. North Coast Old Rasputin XII is back!

more stuff coming in tomorrow.

still a little bit of black xantus left!

cheers,

dave hauslein

beer manager

415-255-0610

Test Stress!

I have a friend who recently had a needle biopsy for a lung mass that might be cancer. She is waiting for pathology results. They told her she'd have the results in 5-7 days. She called the office over a week later, no results yet. She spoke of a PA's voice that went from chipper to kind of "depressed" on the phone when she'd called the office and asked for her test results. What did that mean?

It made me think of how closely we watch facial expressions and listen for changes in tone of anyone involved in our tests...the person performing our tests, the nurses in our physician's office, our physician as he or she enters the room. Though we are thinking a change in expression from happy to depressed is an indication of something bad about our test result, it could be a voice or facial expression changes because someone just remembered they'd forgotten to pay a bill, take out the garbage or any number of things. But we don't know. Maybe the PA on the phone with my friend had just realized he'd lost his pen as he was trying to write down her information.

Sometimes I've even thought that the nurse in the office talking to me in a cheerful (but distracted) tone might just be doing that as a cover, they know my bad test results but don't want to let on, they want the doctor to be the one to tell me.

We are hyper-vigilant in all of our observations. We read into every posture, every facial expression, every vocal inflection. I've felt before, in waiting for test results, that I could relate to criminal defendants before a judge awaiting sentencing. Will they be paroled (good test result, but we'll test you again later to see if you pass), hard time (more surgery and chemotherapy) or a death sentence? It's kind of the same for us. Awaiting our fate, our lives in the balance.

I remember having so many thoughts going through my head when I'd had a CT done and was waiting for results. Every time the phone rang I was afraid it was a doctor calling with bad news. They wouldn't call with good news, or would they? And if they didn't call, was it because they wanted to tell me the bad news in person when I had my appointment and not on the phone? Once I had a hang-up message on my answering machine a few days after a CT. Was it my doctor? Did she not want to leave the bad news on an answering machine and so hung up without leaving a message?

My husband is a nurse who works at the hospital where I have my CTs done, so instead of waiting for results, I finally started asking him to access my results on his computer at work and to let me know what they were as soon as he got them. He always called me as soon as he got to work with my results. The last time he was supposed to call me with my results, he never called. I spent 8 hours sure it was because the results were bad and he would tell me when he got home as he didn't want to tell me on the phone (turned out he got very busy when he got to work and forgot to pull them up, they were fine).

I've had 13 CTs so far and countless tumor marker tests. The stress of waiting for results is horrible. No one who hasn't had a cancer diagnosis knows what we go through.

This podcast from CR Magazine has some great ideas for dealing with the stress of testing: Beating Test Stress

I loved one of the examples in the podcast...a patient walks into the office for test results and the doctor sees her in the waiting room and says "Your tests are fine!". The next time the patient goes to the office for test results, the doctor says nothing to her in the waiting room. Is it because the news is bad? We think that way.

The advice in the podcast is very good, we should be very clear to our physicians...please call whether the news is good or bad. Or don't call at all, I want my results at the office when I am there for my appointment. Being specific about what we need can give us some control at a time we feel our lives are out of control. It's another way we can advocate for ourselves.

It's all good.

Every time I go to the hospital it's like walking into battle with a butterknife. I become helpless. Literally, the sight of the word "infusion" displayed in bold letters on the back wall caused tears to well up in my eyes. This visit was much calmer than last time, though, partially because I was prepared for my feelings, and partially because I had a comforting shoulder to lean on.

CT results are N.E.D. My scan is showing improvement of the inflammation that radiation has caused. All looks good. My oncologist won't let me take my port out until the next scan in January.

All looks good...

The physical seems to be healing faster than the psychological. I'm trying my best. It's hard watching my Ewing's friends fall; I feel guilty for being so lucky. I wish there was more I could do, I wish I could change things for all of us.

I've recently organized all of the self portraits I took during treatment and have posted them to my FLICKR. It's interesting to see my range of emotion... the cute to the terribly ill. You can see a weight in my eyes during the chemo sessions. My eyes look like anvils. Perhaps my documentation will help some of you... look! You're not the only one who has had a disgustingly mangy half-bald head.

My friend and I are working on an art project to raise money and enrich the experience of other cancer patients. Remember Cancer Girl? We want to make her into a full-length comic that will give you something hilarious and uplifting to read while getting poison pumped into you. I remember my attention span being shit when I was getting my chemo... a comic would have been perfect.

Let me know if any of you would like to be involved in any way.

I hope you all are doing well!

OUR SPOT ON "EYE ON THE BAY"

http://cbs5.com/eyeonthebay

The video entitled 49 Mile Drive Leg 3.

cheers,

dave hauslein

beer manager

415-255-0610

Xeloda – Day 3

When I brushed my teeth last night I had a little blood on my toothbrush so the gums are getting a bit sensitive. My eyes are still watering from the Taxotere and may continue to water from the Xeloda.

Today I had an appointment at the clinic to finish off the study I was on. The only concern I brought to the oncologist is that the top of my left foot was a bit swollen and sore. She looked at it and said ... let’s just watch it for now. It might just be a build-up of fluid from a pair of tighter shoes I’d been wearing, as my legs are still retaining quite a bit of water. On a positive note, since I’m no longer on Taxotere or the steroids, that swelling should go down. And that pouch of fluid under my chin should start disappearing too. My face will start returning to normal as opposed to the round faced I developed... and my chemo belly should also go down. I can’t even tell you how good that makes me feel.

My next appointment is almost three weeks away. Hooray!

worth 1,000 words

Disease Team awards announced

Novel funding mechanism speeds the path of research, News Release, California Institute for Regenerative Medicine (CIRM), October 28, 2009. Excerpt:

The California Institute for Regenerative Medicine, the state stem cell agency, and two international partners awarded more than $250 million to 14 multidisciplinary teams of researchers in California, the UK and Canada to develop stem cell-based therapies for 11 diseases. The Disease Team Research Awards include approximately $8 million from the Medical Research Council, UK, and approximately $35 million from the Cancer Stem Cell Consortium, Canada, to fund the international portions of the collaborations.

Wednesday, October 28, 2009

Healthy Spirits in 7X7 Magazine!

Check us out!

http://www.7x7.com/blogs/buzzed/pumkd-seasonal-pumpkin-ales-hit-sf

cheers,

dave hauslein
beer manager

Soccer

The girls did well this past fall in the Respective soccer leagues. They played on different teams but they had the same coach which was great so the practice times and game times never changed.

Raegan was the leading scorer on her team, she is and aggressive hard charging attacking striker.

Ravyn did well too, she is just getting her feet under her, she scored a few goals but we will have to work on her killer instinct.

Oh yea I tooted my air horn on every goal the girls or their teammates made. Note: I was the only parent out there in the YMCA youth soccer league with an air horn, bang sticks, pom poms, and megaphones..... Can you tell I am their biggest fan, and a constant source of embarrassment already.

AVEC LES BONS VOEUX AND MORE!

The Christmas stuff is starting to come in! Lots of exciting releases in the near future, so check the blog as often as possible if you want to be up to date!

1. Du Pont Avec Les Bons Voeux

2. Scaldis Prestige De Nuits

3. Scaldis Noel 8.4oz/750ml

4. Castelain Blonde Biere de Garde 12oz.

Lots of good stuff coming in tomorrow!

cheers,

dave hauslein

beer manager

415-255-0610

Xeloda - Day 2

Last night I had a light supper and 20 minutes later I took my Xeloda pills. I went to class and really felt no ill effects of the chemo. This morning I had some toast for breakfast and then shortly afterwards, my chemo pills. It’s almost four hours later and I feel pretty good. I know this is only day two and I'm probably celebrating prematurely but I can’t help being excited about how well it’s going. I can only hope it continues.

Some of the side effects of the Taxotere are slowly clearing up ... for example; my nose isn’t all stuffed up and runny all the time ... and I’m thinking nose bleeds are a thing of the past. I have three boxes of Kleenex in the living room so that no matter where I sit, there is always tissue within arms reach. I might be able to get rid of a couple of boxes now. My watery eyes aren’t as watery. I’m not coughing near as much as I was say a week ago. And the absolutely best part is that I don’t have to take steroids ... so no nightmares this weekend. Yippee!

Final (for now) lymphedema treatment

The PT and I agree that since the manual lymphatic drainage massage doesn't appear to be working, it's time to stop wasting money and time on it. I went straight form PT to order new sleeves and gloves and the provider gave me a new glove yesterday from stock on hand. The new sleeves are made to measure in Germany and take a couple of weeks to arrive. When they get here, I will stop bandaging at night, wean myself off the ativan, wear the new garments and hope for stability.

The good news is that the sleeve provider measured my arm yesterday and each measurement was the same as in April, the last time I had sleeves made. So hopefully the extra puffiness in my hand may resolve on its own, just like it did the last time, and I will be back to my usual daily lymphedema dealings.

One can always hope.

how cool is this?

Yesterday morning, I got a call from Oresta. She told me that she had read my article in the Centretown Buzz and wanted to reach out to me.

Even though I love her store and spa (I asked for gift certificates for Christmas last year), I was not on her mailing list and had not received the letter that I posted above.

It's hard to read, so here is the text, in full:

OCTOBER is BREAST CANCER AWARENESS MONTH

Pinkwasher: (pink’-wah-sher) noun. A company that pur-
ports to care about breast cancer by promoting a pink
ribboned product, but manufactures products that are
linked to the disease.

Dear clients,

ORESTA organic skin care confectionery is committed to providing organic spa
treatments and to supporting companies that manufacture truly pure and organic
products. We believe in beauty without compromising your health.

We have been touched by cancer in our families and with our clientele - as
cancer survivors and undergoing cancer therapy. The prevailing comment of clients
who have come in for a spa treatment while undergoing therapy was how nurturing a
visit to ORESTA organic skin care confectionery was for them.

We have wanted to help the cause but have struggled with a way to do this.
Do we donate a % of sales? a % of services? Do we fundraise? For which organiza-
tion or foundation? In the end, what feels right for us, is doing what we do best:
pampering.

If you, a friend or loved one is undergoing cancer therapy and would enjoy an
organic facial treatment, please contact us. We are committed to treating one
woman per week to a complimentary ORESTA treatment.

Oresta was calling to offer me a facial (I am going on Friday) but I offered to blog about this offer. She asked me to clarify that she and her staff will be offering this service to women undergoing treatment throughout the year - not just during October.

I am impressed and touched beyong words. Have any of you ever heard of anyone else doing this?

I told my spouse that, by coincidence, I had written in journal that morning that I would really like a facial. He said, "Tomorrow, could you write that you would really like a home renovation?"

Tuesday, October 27, 2009

single dad again

My wife is once again out of town for work. I hope I can stay healthy over the next couple of weeks. The last time she was off on travel I had to visit the Emergency Spa, and it was not a good visit. (Father's Day 2009)

There hair is already done for the next couple of weeks, $30 bucks each to get their hair done at the beauty shop, Time and stress saved not having to do their hair with my fat fingers Priceless.

Attitude!

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

Xeloda – Day One

This morning I started my new chemo pills and about two and half hours later I felt a bit flushed and lite headed. Something was kicking in but I don’t quite know what. I’m being extra careful of what I eat and drink. I’m going to stay away from dairy products for a bit till I figure this thing out. My stomach gurgles every once in a while but not too bad. The only prescription I have to help with nausea and or stomach issues is Metoclopramide. I found it helpful when I was on Taxotere and I’ve been OK`d to go on this drug with Xeloda.

Last night I slept on my stomach for the first time in about a year. The reason I avoided sleeping on my stomach is because I had either a CVC on my chest or a PICC line on my arm and I was afraid I’d pull it out in my sleep. It felt really good sleeping on my stomach and very liberating not having any attachments.

This morning I went to the ‘living with cancer’ support group. At the end of it all, I asked if anyone would like to get together for coffee sometimes. Everyone jumped at the idea so I offered to take emails and organize it. Now to find a nice central location … with parking.

chemotherapy and the H1N1 vaccine

As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.

I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.

I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.

Today, the nurse who works with my oncologist called and told me to wait.

The reasoning goes as follows:

Chemotherapy suppresses the immune system.

The flu shot is meant to boost it.

Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.

Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.

This means that I will be waiting until November 10 for my H1N1 vaccine.

And washing my hands. A lot.

Last authorized physical therapy

Today is the last authorized day of physical therapy for my lymphedema flare up. I know I could get more visits approved, but if the PT thinks it's not helping, she won't recommend more treatment.

I am worried that I won't be able to manage this flare up without professional help and don't know what I'll do if I have to. Yes, I will be measured for a new sleeve and glove. That's the next step at this point. My six month old sleeve and glove are too worn out to be effective any more.

But if the bandaging isn't helping at night, and the sleeve and glove aren't providing enough compression during the day, what's left?

I guess I will find out in a few hours. In the meantime, stress.

Monday, October 26, 2009

A New Regimen

Today I had my appointment with my oncologist to decide on my next course of action. We are going to go with XELODA® Capecitabine tablets. I will take five pills in the morning and five pills in the evening for two weeks straight with one week off making it a three-week cycle.

So here are pluses from today's’ visit …

My PICC line was removed. No more weekly visit to the clinic for dressing changes.
There will be fewer visits to the clinic. I only come in once every three weeks for blood work and a doctor’s visit. CT scans will now be once every three months instead of every six weeks.
The fluid around my lungs will go down because it was likely caused by the Taxotere.
The bone scan taken last Thursday indicates that cancer on my ribs is no longer visible.
The pharmacist said that the Xeloda was a popular prescription and that there were many patients on it. I thought that was encouraging. I also asked her about side effects as compared to Taxotere and she said Taxotere is one of the tougher chemos. She did not say this one would be easier but I just feel it might be.

The clinic gave me this handy dandy pill organizer to make sure everything goes smoothly. I start first thing tomorrow morning.

Over all I’m feeling pretty excited with this new plan.

Candy Banter

My favorite childhood candy tastes just as sweet today.

Get your sweet-tooth fix at Open Mouth, Insert Fork.

Sunday, October 25, 2009

Inspiring Video

CSC targeted to prevent relapse

Cancer stem cells targeted to prevent relapse by Vivek Sinanan, The Johns Hopkins News-Letter, October 26, 2009. In part, the news item appears to be based on this editorial: Controversies in cancer stem cells by Richard J Jones, J Mol Med 2009(Oct 23) [Epub ahead of print][PubMed Citation][Full text]. In turn, the editorial cites these articles, which will be published in J Mol Med 2009; 87(11):

Cancer stem cells: controversies in multiple myeloma, Sarah K Brennan, William Matsui, J Mol Med 2009(Sep 17) [Epub ahead of print][PubMed Citation].

Brain cancer stem cells, Sara GM Piccirillo and 4 co-authors, including Khalid Shah, J Mol Med 2009(Sep 29) [Epub ahead of print][PubMed Citation].

Colon cancer stem cells, Lucia Ricci-Vitiani and 4 co-authors, including Ruggero De Maria, J Mol Med 2009(Sep 2) [Epub ahead of print][PubMed Citation].

Cancer stem cells-clinical relevance, Richard J Jones, J Mol Med 2009(Oct 10) [Epub ahead of print][PubMed Citation].

Saturday, October 24, 2009

Bone Scan

Yesterday I had a bone scan done at the clinic. For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones.

Two different people made a total of four attempts to get this tracer into my veins. The problem was that after so many years of being poked and prodded, my veins have become so very fragile and kept exploding every time they stuck a needle in. Ouch! Never the less, they got enough in my veins so that they could see my bones.

While I was at the clinic I became really chilled. I think it was from the flu shot I got the night before. When I got home I wrapped myself up in blankets, head to toe. I ended up having a short nap and feeling better.

Last night I woke up at 4:00 am with a bout of diarrhea ... likely from the radioactive tracer that was making its way out of my system.

I'm glad this week is over.

Friday, October 23, 2009

Making mountains out of molehills

Jay spent the entire summer engaged in serious warfare with the moles that kept ripping up our back yard. He tried everything, including a whole bunch of these metal posts that you stick into the ground. Supposedly, these posts emit a sound that drives the moles away. Our theory is that the sound just enraged the moles and made them rip up the yard even more while seeking their revenge. It was either that, or they enjoyed the noise and were dancing to it with wild abandon. In the end, Jay forked over a giant sum of money to a professional mole-trapping company. WCK and I would eagerly watch out the window every time the Mole Guy came by. In the end, the Mole Guy was only able to trap one mole. I'm sure he took it away to a nurturing Mole Resort and Spa, where the mole is living out the rest of his days in peace and harmony.

Fast forward to today. Jay and I went to parent-teacher conferences at WCK's preschool, where we got to take a look at some of WCK's work. During the first week of school, everyone had to draw a picture of their family and then tell the teacher one thing about their family, which the teacher wrote on the back of the paper. WCK's teacher said most kids responded with things like, "My mommy reads books to me," or "We all like to go to Worlds of Fun together."

WCK's summary of our family life? "My daddy is angry because we have moles in our back yard."

It's funny 'cause it's true.

Eleven likely winners of Disease Team awards

Results will soon be announced for the Disease Team Research Awards Competition of the California Institute for Regenerative Medicine (CIRM). These awards will support multi-disciplinary teams of scientists in pursuit of therapies for specific diseases. See: The Lucky 11 and $167 Million in Stem Cell Research Cash, David Jensen, California Stem Cell Report, October 23, 2009. First two paragraphs:

The California stem cell agency has pinpointed 11 likely winners of grants and loans up to $20 million each in the agency's ambitious disease team round, which was once projected at $210 million.

The awards are scheduled to be formally approved next week by the CIRM board of directors at a two-day meeting in Los Angeles at the Luxe Hotel. CIRM's Grants Working Group decided earlier that 11 proposals merited funding. The CIRM board almost never rejects a recommendation for funding by its reviewers.

Comment: Participation in the Disease Team Research Awards program is the first initiative launched by the Cancer Stem Cell Consortium (CSCC), in collaboration with CIRM. This is an international collaboration to advance cancer stem cell research, involving both Canadian and Californian scientists. See this previous post: CIRM/CSCC Joint Announcement: Disease Teams Awards, October 23, 2008.

Lymphedema update

It's now officially seven weeks since I began dealing with this lymphedema flare up. The physical therapist measured my arm today and there is no real change. I have had nine rounds of PT so as you can imagine, I am distressed. She gave me some new bandaging material to try over the weekend. I have one more approved visit next week and then, if things remain the same, the PT will recommend that I not continue therapy at this time but get fitted for a new sleeve and glove. If, on the other hand, things change over the weekend and there is measurable improvement in my hand and arm, the PT will request authorization for additional visits and continue to treat me.

Dealing with lymphedema is endlessly frustrating. Evidently, although many people respond quickly to the manual lymphatic drainage, massage and bandaging (the gold standard of treatment for lymphedema), there are a stubborn few who have fall into the cracks and don't get immediate relief. That's my lymphedema -- Trouble with a capital T.

Chemo School

On Monday when I saw the oncologist she figured I should go to chemo school because I had never gone and with a new chemo treatment starting next week, it might be helpful. So yesterday along with getting my PICC redressed, I went to class.

What did I learn?

That I should be aware of people who have shingles. The nurse said shingles could be infectious when the person is experiencing blisters. If the blisters are crusted over, I should be OK.
That I shouldn’t gulp down a drink of water or juice because it will stimulate diarrhea. That occasionally happens after I guzzle down my daily protein shake. Who knew that?
That when using alcohol-based hand sanitizing gels, have enough of it in my hands so that they are completely wet for 15 seconds. The RN said, do not use antibacterial wipes because they remove the good bacteria from your hands. Her preference is the baby wipes.
That I should stay two meters away from someone who has flu symptoms... to minimize my risk.

Otherwise it was just a good review of a lot I already knew.

On a side note, we also discussed flu shots at which point I realized I was on an extra week off from my chemo. I talked to the research nurse and she said I was good to go for the seasonal flu shot. So last night I zipped over to the health clinic and got it ... plus they ok`d me for a bonus pneumococcal vaccine for pneumonia.

I still have to deal with H1N1 flu shot when it becomes available.

beautiful night

Thanks to everyone who came to the Toronto launch last night.

My face hurts from smiling and my heart is so full it could burst.

And the bookstore sold out the books.

Thursday, October 22, 2009

New Stuff

1.Port Brewing Santa's Little Helper (we have the 2008 and the 2009, so try them back to back!)

2. Port Wipeout IPA

3. Port High Tide Wet Hop IPA (in keeping with the brewer's wishes, this beer will be available for sale on Monday, October 26.)

4. Lost Abbey Red Barn Ale

5. Telegraph White Ale

6. Pinkus Weizen

7. Samuel Smith Apple Cider is back!

We still have a few bottles of Black Xantus lying around, so get it before it's gone!

cheers,

dave hauslein

beer manager

415-255-0610

Support Group

Yesterday I meet with our breast cancer support group. It was especially nice to see the ladies this time because I felt I needed to be with people who really understood what I am going through. And meeting them meant I had to share my bad news. Sharing bad news is difficult because I know that my fear will instil fear in them. I know that the first thing I think of when I hear anyone’s bad cancer news is ... wow that could be me. But this time it is me. All the ladies were very understanding and supportive. They just have ‘the look’ and know what to say to make it easier.

And when it comes to support, I would like to thank everyone who reads this blog and has left comments. I know I am not alone. So many others have walked a similar path and truly understand what it feels like. The comments are so inspiring and give me support. They also make me feel so hopeful. I don’t know where I’d be without you.

So thank you very much ... I look forward everyday to reading everyone’s comments to my blog.

The best ST:TNG episode EVER!

I have been staying up past eleven o'clock every night to check out the first five minutes of the Star Trek: The Next Generation episode on reruns. Last night, despite my fatigue, my all-time favorite episode aired and I had to stay up to watch the whole thing.

"First Contact" remains the episode I most associate with the genius of Star Trek. Commander Riker is part of a first contact team studying a civilization on the verge of breaking out into the galaxy in order to offer them a chance to join the federation. He is injured and at a medical facility -- surprise -- is revealed to be an alien.

The planet's population appears to be split about the rapid technological and social changes they are undergoing. (Sound familiar?) The planetary head of government wants to move forward with space exploration, as does the science minister. The minister of security worries that the people can't handle so much new at once. Riker's injuries and Captain Picard's appearance to the planetary government combine to shake things up too much. The minister of security tries to make it appear that Riker shot him. His supposed martyrdom is intended to maintain the status quo and send the aliens away.

The real importance of this episode for me is the role the science minister plays. She tells part of her backstory:
Mirasta Yale: [visiting the Enterprise] When I was a child, my parents would take me to the planetarium. And we would sit in the dark. And it was as if I was on a spaceship, on my way to another world - to meet people on other planets. Part of me is waiting for the lights to come up, and the program to end.

And at the end of the episode, after learning that her proposed study of warp drive will have to be slowed down, and that the Enterprise will leave, perhaps only to return after many years, she asks to stay on the Enterprise and leave her planet.
Mirasta Yale: Take me with you!
Captain Jean-Luc Picard: I have to believe that you cannot be fully prepared for the realities of space travel.
Mirasta Yale: I have been prepared for the realities of space travel since I was nine years old and sitting in a planetarium!

That was Roddenberry's genius -- to articulate the human desire to explore and discover. I thrilled to Mirasta Yale's character's line "Take me with you!" the first time I heard it in 1991. Hearing it again last night was no less soul-stirring. I too want to be part of Star Trek's advanced civilization. And by the year 2367, they surely have discovered a cure for cancer!

launching

I'm off to Toronto today to celebrate my book! If you're in town, come see me at the Toronto Women's Bookstore.

We'll have a little nosh, a little drink, I'll read from the book...I think it will be a nice evening.

Meanwhile, here's a link to a blog called "Incredible Women," where I am honoured to say that I am being featured today.

Wednesday, October 21, 2009

Class Last Night

Class went well last night. I’m excited to say I got an A- on last week’s assignment. That is better than what I expected ... that is for sure. My next assignment, due in December, is a group project. It’s a training needs analysis for an organization. The truth is that I’d rather not be doing this right now but on the other hand it might just be the distraction I need.

Speaking of distractions ... I think I’m going to get busy with a few other things too. There are some Arts & Medicine support groups through the Cancer Institute. Yesterday a couple of the ladies were talking about a knitting group starting up this month and a watercolor painting group starting in November. I might just sign up for both.

milestone reviewed

I am featured on a blog called "Women at Forty" today.

When I was aked to submit a post, I thought it would be appropriate to re-visit a post I wrote on the eve of my fortieth birthday.

I'm looking forward to writing my fiftieth birthday post. Only eight more years and countless clean scans to go.

More pink ribbon crap

Unbelievable! I just got an email from Young Survival Coalition in which they provide good info about breast cancer but then proceed to hawk more pink ribbon crap. And they don't disclose how much money YSC gets from each purchase.

Do me a favor -- DON"T go to their boutique and shop. Feel free to make a donation, it's a worthy cause; but please don't participate in the "Pinktobering" of breast cancer.

YSC's Breast Cancer Awareness Month Boutique

We are pleased to announce the partnerships Young Survival Coalition has formed with numerous retailers in honor of Breast Cancer Awareness Month 2009. The support and generosity of our corporate partners will help raise vital awareness about young women and breast cancer as well as the much needed funding to ensure that young women affected by the disease can access the resources, programs and peer support they need.

We are grateful to our retail partners for sharing the same passion and dedication to our mission that the YSC Board, staff and thousands of volunteers do, and we hope you will show your support by doing your holiday shopping early.

Please visit our online Boutique for a complete listing of all the exciting products available this year as well as purchasing information.

Mikimoto Everything Is Possible with Hope Bracelet

Afterglow Organic Lip Love in Muse

Breast Cancer Awareness Edition Oakley Ravishing

Lauren Merkin Breast Cancer Awareness Wallet

Note: In our Boutique, ongoing partnerships are marked with an asterisk; purchases made throughout the year will benefit YSC.

YSC's Pink Vespa Sweepstakes

Become a fan of YSC on Facebook and register for a chance to drive away on this limited edition pink Vespa LX 50! Already a fan of YSC? You're still eligable to enter, just vist our fan page for more details. Help us reach 10,000 fans, and spread the word that young women can and do get breast cancer.

Tuesday, October 20, 2009

Hometown Hospitality

Turns out my hometown B&B has an open door policy.

The owners were out of town, so they left the door of the cottage unlocked for us.

Read more about it at Open Mouth, Insert Fork.

What are the Odds?

I am one lucky gal, and I have the winning raffle tickets to prove it.

At A3M's benefit dinner and concert last Saturday, my raffle ticket was pulled out of a hopper with thousands of other ticket stubs. Just as I was thinking about how I would spend my $500 windfall, I heard the emcee gasp in amazement.

"I can't believe this, but the same person has won twice." She once again called my name and announced that I had just won an NBA basketball signed by the entire Laker team and two tickets on the floor for a Laker game. I was too busy mentally calculating the odds of being a two-time winner to scream in excitement. Besides, I have this minor character flaw - I don't bleed purple and gold.

On Monday morning I was contemplating how I would spend my lucky money. Should I donate it back to A3M or another favorite charity? Should I treat four friends to a lavish dinner? Should I continue my pursuit for the perfect purse?

These thoughts were swirling as I pulled out of the parking lot after the YWCA' s Women for Racial Justice Breakfast. Then I heard the unmistakable crunch of mangled metal. My Prius had a close encounter with a parking lot pillar.

Now at least I know how I'll spend my windfall. Oh, lucky me.

A Few Deep Breaths

Well I must admit, yesterday I had to take a moment here and there and remember to just ‘breath’. That is what we’re taught to do when dealing with cancer and the roller coaster ride it takes you on. Just stop and take a few deep breaths. As much as you try and prepare for the worst news with these CT scans ... negative news stills hits you like a ton of bricks.

I woke up at 4:00 am trying to wrap my head around how I’m going to cope with the latest news. After about an hour or so, I fell asleep and woke up feeling a bit more in control. I figure I’m going to cope with this like I do most everything else ... I’m going to jump in both feet and do what I have to. I’ll decide on a course of treatment and deal with it.

I was so happy this morning that I had my support group meeting. There were other folks there with advanced cancer who offered me the hope and support I need right now.

de-bunking the pink

"Three years ago, I saw a story on the news while I was at the gym. An investigative feature on the breast cancer awareness contributions that various corporations pledged during Breast Cancer Awareness Month found that most of these promotions led to increased sales and windfall profits that dwarfed the piddling donations that the extra sales generated. Until that moment, I was gung-ho about buying products marked with pink ribbons."

And so begins the best article I have ever read on the subject of the pink-washing of October (and not just because the author says you should all go out and buy my book). Suzanne Reisman hits all the bases in this piece and does it with eloquence and a sense of humour.

If you have ever struggled to understand why some of us object to pinxploitation (I just made that word up), your questions will be answered.

Hooked on "Star Trek: The Next Generation" -- AGAIN

I was channel surfing one night last week and came across reruns of Star Trek: The Next Generation (now to be known as TNG). The first episode I saw was when when the Borg captured Captain Picard. Well, I remembered that was a good one, so I stayed up until midnight watching. The next night was the post-Borg episode when Picard goes back to his home village on earth and has one of the best Star Trek endings ever, proving that Gene Roddenberry was truly a genius.

It ends with Picard back on board the Enterprise, and all's right with the world. His star-crazed young nephew sits outdoors looking up at a starry sky, dreaming about when he will be a starship captain. That image wrung my heart.

I always wanted to travel in space. Good lord, I've been reading science fiction since I was 11 years old! Now that I am turning fifty next month, and living with metastatic cancer, it seems highly unlikely that my dream will ever come true. Still, many other girls and boys were inspired by reading science fiction and watching Star Trek and took up careers that may some day bring humanity to the stars.

So now I am hooked on TNG again and stay up too late at night watching bad 80's hair styles and some pretty stiff acting. But I still want to go aboard the Enterprise one day "to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no one has gone before..."

Monday, October 19, 2009

Blood Work/CT Scan Results

Today I had my blood work and visit with the oncologist. Blood work looks good but the CT scan results ... not so good. My lungs and bones are stable but my liver is not. The liver is showing new lesions with growth of the existing tumours. One of the smaller tumours grew almost a centimetre ... which is substantial. So the oncologist recommends we change chemotherapy as Taxotere and the possible study drug I was on are no longer effective.

Our next step is to choose between Xeloda and another study drug. I have been given a bunch of reading material from which I will be making my decision. Then we will start the new chemo next week. The reason we start the new treatment next week and not this week is to allow more time for my body to get rid of any toxins associated with the old chemo.

Good news is ... I’m done with the steroids. I don’t need to take them with the new chemo. Yippee!

Hello, Goodbye

2009 has been a year of losses. As my circle of friends affected by cancer widens, the death toll seems to be rising proportionately.

I won't list each friend by name, but they all had at least a half dozen things in common: access to the best cancer centers, doctors and treatments; a strong support network of family and friends; the proverbial positive attitude and a feisty determination to lead full, vibrant lives.

But sometimes that's not enough.

Take two recent deaths: Nick, whose aggressive cancer roared back right after a bone marrow transplant and Gahlit, a fellow blood cancer patient at the City of Hope.

My initial bond with Gahlit was based on a mutual admiration of our head coverings. The conversation soon turned from hats to healing, and before we knew it, we were exchanging email addresses and phone numbers. The emails flew back fast and furiously as we shared our life stories and discussed our hopes and fears.

I'll never forget when I visited this type-A dynamo right after her first donor stem cell transplant. She was simultaneously investigating health insurance options for her nanny, while buzzing the nurses about medication while she had a video conversation with her two-year-old daughter.

She relapsed three months later and underwent a second stem cell transplant with the same donor.

She rebounded and continued to live her life as she always did both BC and AC (before and after cancer) - with a vengeance.

When the cancer came back a third time, her friends all reminded her, "You're strong, you'll beat this again." But sometimes, in spite of the strength of Samson, cancer has its way. She died at home last Tuesday morning.

Gahlit's death, on the heels of Tony's and Nick's passings, and just a few months after the death of 28-year-old Michelle, has left me sad and weary. I was even beginning to develop a "Why bother?" attitude.

As luck would have it, I sat next to the West Coast director for Be the Match (formerly known as the National Bone Marrow Registry) at last night's benefit dinner for A3M. I told her about my despair from the recent deaths of a half dozen bone marrow transplantees. She reminded me that there are no guarantees, even after a bone marrow or stem cell transplant, but one thing is certain. Without a transplant, most patients have a zero chance of survival.

That's all I needed to hear to snap me out of my funk and to recommit myself to the efforts to find a match for patients like Krissy Kobata, a 27-year-old Hapa with a rare blood disorder.

Queen of the Mutts Krissy Kobata and Team Krissy at the 2009 Doo Dah Parade

What can you do?

If you're not already registered and you're a minority (Asian, African American, Native American or Latino) or multi-racial, you can order a FREE tissue typing kit online from A3M or check the site for a marrow drive near you.

You can also order a kit from Be the Match (formerly known as the National Bone Marrow Program) or check the site for a marrow drive near you.

If you're already registered, consider making a donation to A3M or Be the Match.

Encourage your family and friends to sign up and Be the Match.

If you live in Southern California, volunteer with me at an A3M bone marrow drive.

Organize a drive at your church, synagogue, club, school or other organization.

Not so much pink

I haven't seen so much pink this October. Maybe the concept of cause marketing is slowing down, or maybe there really is less breast cancer pink ribbon crap out there. Or maybe I just am not noticing it....

advice (with the benefit of hindsight)

Last week, the Centretown Buzz (an Ottawa community paper) asked me to write the article that "I wish I could have read when I was first diagnosed."

It's on the front page of this week's issue, and begins like this:

On December 1^st, 2005, I found a lump in my breast, as I was getting undressed. One month later, I was diagnosed with breast cancer. I was 38 years old, with two young kids and a very hectic life. I felt completely blind-sided.

Almost four years later, and with the benefit of hindsight, I share some advice for others who find themselves in my situation.

As I looked back on the last few years, the following key points best summarize my advice:

Bring someone with you to appointments, especially in the beginning.

Be your own advocate.

Be nice to the admin staff and nurses.

Don’t compare yourself to anyone else.

Let others help you.

Never give up hope.

The entire article is online, so you can read it for yourself.

Let me know what you think. And if you've been there, please don't hesitate to share some of your hard-earned experience.