New Breast Cancer Treatment

Here is a two and half minute video on a new innovative breast cancer treatment … partial breast irradiation.

Interview on Q13 Fox

 Parts 1 and 2 of last week's young breast cancer survivors' interview with Angela King of Q13 Fox aired earlier last night. I speak in part 1. You can view the link here. (Further down the left side of that page is a link saying : "Related BREAST CANCER SURVIVORS PART 2." Click there to see the second half of the story.)

                                                 

(This link takes you to part one of the four part story Angela told a few years ago in 2008.)

Here is the text that accompanied the video:

October - National Breast Cancer Awareness Month - is almost over, but a group of ladies we first introduced you to in 2008 is reminding everyone to remain vigilant year round.

Tammy, Jill, Katie, Nicole, Anna, Courtney are members of the Young Survival Coalition. The support group is made up of women who were diagnosed with breast cancer before their 40th birthdays (the majority of breast cancer patients find out they have the disease when they're in their 60's). 

When we first interviewed these six survivors two years ago, there were part of a group of 11 women. Some are doing well, others not so well, and unfortunately one didn't make it. But let's go back now ... to when they were all still here. The first part of this story is from one of the original stories that aired back in 2008. 

These are some of the members of the Young Survival Coalition.  This story is dedicated to the *one* who's passed on.

Daily Brivanib Side Effects

After being on a few different chemo regimens, I’ve learned the best thing to do when starting a new one is to keep a daily diary of the side effects. It just makes them easier to manage and to reconcile them when and if they are better or worse in my mind. Also, when the nurse asks me how the last week was I can give her a detailed list of what went on. She really likes my list.

These are a few side effects I experienced daily …

• woozy and drunk like till noon and then tapers off to nothing around 5 pm
• chills and nausea … mild
• fatigue
• blood stained mucus … minimal
• a rash just above my PICC line … minor

When I signed up for this clinical trial, the Onc warned me that my bp will probably go up. And mine is now 170/103.

Anyways, he put me on 5mg of Ran-Ramipril and said we’ll watch these numbers closely and adjust as required.

Healthy Spirits: GOOSE ISLAND and more!

1. Goose Island Bourbon County Brand Stout(!!!)
2.Goose Island Demolition Ale
3.Bourgogne Des Flandres
4.Bellegems Bruin

HALLOWEEN WEEKEND SPECIAL!
-Coney Island Freaktoberfest 4-packs=$5.49+tx

cheers,

dave hauslein
beer manager
415-255-0610

Results after One Week on Brivanib

After having my blood drawn and PICC line redressed at the clinic, I spent some time catching up on emails and surfing. I was feeling a bit down going into this appointment because of my dark urine earlier this week and I was not expecting good news. Anyways, the nurse and I went over the side effects I documented this past week. She then brought out the blood work and said with a smile, your liver numbers have gone way down. Really? Yes, my overall liver function has improved by 20%.

Then my Onc came in to the room and joined in. We all sat there with a look of surprise and then I saw a small smile come across on my Onc’s face … that said it all for me.

I can honestly say we all were very surprised by these results, especially after having dark urine this week. But for whatever reason, my body is very receptive to this new chemo. I’m overjoyed.

And then when I got home more good news … D said a lady from the Credit Union came by and dropped off these flowers and some chocolate. Apparently, she said they read my blog and just wanted to give me some flowers. There was no card and so I don’t know who this is from. However, I want to thank you so much because it just made a wonderful day that so much more wonderful.

Healthy Spirits: New Stuff

1.Hanssens Cassis Experimental Brew
2.Hanssens Raspberry Experimental Brew
3.Oerbier Riserva 2009
4. Hitachino Nest Ancient Nipponia
5. Ducato Verdi Imperial Stout Magnums

******SALE!*********

All vintages on BFM's Abbaye De Saint Bon Chien have been reduced!

2009-$24.99
2008-$25.99
2007-$26.99
2006-$27.99

We also have a limited supply of the Bon Chien aged 100% in Merlot Barrels (375ml) for $23.99.

cheers,

dave hauslein
beer manager
415-255-0610

September 11th

Yikes! I've been promoting several causes lately: SU2C, the Standford Study, Heat It To Beat It. All good things to be sure. SU2C is a grass-roots effort to help all of us to join together to beat cancer, the Stanford study seeks to help us deal with the life-altering changes we experience as survivors, and I am proud of Heat It To Beat it, it's a good chance for us to raise awareness and to collect research funds for our cancer.

But I don't want to only use this blog to promote causes.

We just recently passed the Sept.11th date. That date will always mean so much to me. Have I shared my Sept. 11 story here? Don't know if I have in the past.  But here goes....maybe again?

I was treated in NYC for my cancer, I was there often for awhile. I went for an evaluation, then cytoreduction surgery and peritoneal chemo. After my surgery I went back to NYC for follow-up every three months. I had my surgery there in May of 2001. My first follow-up visit (third trip to NYC) was to be late August, early September. I made appointments to be there Sept. 5th.

My oncologist (just one of the doctors I was supposed to see there) called me in late August and asked me to change my Sept. 5th appointment to Sept. 11th. I told her I already had already booked a flight and hotel arrangements, had also made child care arrangements for Sept. 5th. I told her I was supposed to have chemo Sept. 11, so didn't want to change my appointment date. She was a bit flustered with me, but told me okay, just that one time we could have a phone conference vs. an actual appointment since she would be unable to see me Sept. 5th.

I went to Manhattan on Sept. 4th-6th for the rest of my appointments. My husband and I had walked a lot in upper Manhattan my first trip there (highest rent zip code in the US), and Midtown my second trip there (Carnagie Hall, Times Square), so for my Sept. 5th appointment, we decided to explore lower Manhattan, the one area we'd never been. We had a picnic lunch near the Twin Towers. I got a picture of the skyline and the Twin Towers from the Statton Island Ferry.

I developed the pictues on Sept. 10th and showed my kids the Twin Towers on that day. On September 11th, I went to my chemo appointment, and when I got there everyone was in front of the TV. I asked why...they told me of the attack, that the Twin Towers had just collapsed. I saw on the TV people running down a smoke-filled sidewalk...I'd been on that sidewalk just days earlier. I thought of how I'd been near the Twin Towers just days before, probably seen many people returning to work in the Twin Towers, maybe after eating a healthy lunch, maybe a stop at the local health club. I'd felt so vulnerable when I was there and had doubted my cancer would let me live a long life; they'd been healthy and had done everything right and expected many tomorrows. Then the planes hit their buildings. It seemed so ironic. I immediately accepted something I'd heard; none of us are promised tomorrow.

I went to church after Sept. 11th and they did a slide presentation of the Twin Towers attack. I sobbed and sobbed the entire service. I saw the pictures, heard the cries, saw those who decided to jump vs. being burned to death. My heart broke.  I'd just been there.  I knew all of the sites in the slides.  To me it was personal.

I went again to NYC for yet another appointment a few months later. I went to Ground Zero, just a big hole in the ground. The quilts and pictures were still all displayed. The depression in the city was palpable. So many who had assumed long lives had perished. It was hard to wrap my mind around it. My kids hated that I was going back to NYC, and that I used an airline that had been used in the attacks..."but mom, they fly your plane into buildings!".

I always stayed at the same hotel in NYC, so after the fact I asked the hotel staff what Sept. 11 had been like. One said he and his son lived in lower Manhattan. When he learned of the attacks, all public transportation had been suspended. He had a child in grade school in lower Manhattan, so he'd left his job and ran miles through barricades to find his son. It turned out his son had seen the Twin Towers hit by the planes from his grade-school classroom window. His son now slept with him every night, he was afraid, insecure.  The depression in NYC that trip was palpable.

September 11th had such an impact on me. What if I had changed my appointment and been there that day? Would I have been at the Twin Towers on their observation deck, maybe? Would I have not been able to come home, though my kids expected me? Would I have run down that same smoke-filled sidewalk? So many healthy and innocent people died. Why did I deserve to survive?

It gave me new incentive.  I knew if I survived, I needed to put my survival to good use.  I hope I am doing that, and am so grateful for the opportunity.

Sears Coffee Group Meeting

Our Sears Coffee ladies group decided to visit one of our own who is in hospice. J’s daughter T greeted us at the entrance to J’s room. We all walked in and started chattering just like a bunch of school girls. First thing was for everyone to find a seat … of course that included our mascot Ari. He found a spot on the bed amongst J’s assortment of soft and cuddly stuffed bears. Unfortunately he kept falling over … giggling that he was being too rambunctious, we had him sit on S’s lap so he’d behave.

Then we checked in with J to see how she was feeling. She has had a drain put in from her liver so she is not looking jaundiced any more. She said today was a good day and had quite a busy schedule this week… visitors and such. She said she was happy because everything she needs is taken care of. Then we checked out all her doodads on her shelves and that were pinned to a cork board. We admired some newly added photos, we checked out some of her lovely flowers on the shelf and talked about the nice view she had out her bedside window. J said she enjoyed the little things like the pigeons that circled around the building for her.

We chatted about what’s new with all of us. I talked about how my chemo made me feel drunk like and of course we got a few jokes and chuckles out of that. J presented each gal with a book mark with inspirational message. Each one specially chosen for each of us… mine said … ‘May God give you a rainbow for every storm’. J I will cherish that, thank you.

Then it was time for photos … C said she didn’t want to be in the front. Once again we had some laughs … trying to rearrange five ladies around a bed … to fit into a picture.

As we were about to leave C decided to share a joke that had been sent around on email. She did a great job telling it and we all laughed pretty hard. 

Soon it was time to leave, each gal giving J a kiss and a hug and a few private words.

Master Thespian

Earlier this month, WCK appeared in a kindergarten production entitled, "The Littlest Pumpkin in the Pumpkin Patch." I thought that staging a Halloween program instead of a Christmas program was a genius move on the part of the music teacher because

a) Now there is one less thing to do at Christmastime. Praise the baby Jesus!

b) The kids got to wear their Halloween costumes as the costumes, so there was no staying up late the night before to construct, say, a sheep costume or a pine tree costume.

Anyone who wanted a line in the play went through a rigorous audition process of raising his or her hand. Everyone who raised a hand got a line. WCK did not raise her hand, but she was still very excited for the play. She practiced the songs every day and night at home. She knew everyone else's lines. When the night of the play came, she ended up in the back row on the opposite side of the auditorium from where Jay and I were sitting. We got to watch a little tuft of her hair -- or what we assumed was a tuft of her hair -- singing the songs. It was a magical evening.

A few weeks later, I found out the school was offering some after-school enrichment programs. These are one-hour programs that meet after school once a week for four weeks. Offerings included arts and crafts, cooking, kickball, drawing, things like that. I read all of the descriptions to WCK, and she announced that she wanted to do ... drama club.

Jay and I were confused. Jay and I are very non-drama-club-type people. In fact, whenever we go to any kind of stage production, we both share a secret, horrible fear that we might get picked out of the audience to go up on the stage, where we would instantly collapse and die. This is one of the reasons Jay has refused to attend a Renaissance festival for 12 years. We did not understand how a person with our shared DNA would want to be voluntarily running toward a drama club instead of running away from a drama club, screaming.

"Do you understand what that is?" I asked her.

"YES!" she said, dramatically. "I WANT TO BE IN A PLAY!"

I couldn't really argue with that, so I signed her up.

Yesterday was the first meeting. WCK was thrilled with drama club. She reported that they're doing a play called "What Teachers Can't Do", and she'll be playing one of the teachers. I was very excited for her, and I asked if that's what they'd be rehearsing for the next three meetings, because the club only meets for three more weeks.

"WHAT?" shrieked WCK. "I THOUGHT THE CLUB MET ALL YEAR!!" (Insert loud, fake crying here)

Apparently, she is learning something about drama.

PET Scan in the Morn

PET scan on Thursday morn. (test to see if the cancer has spread). I hope to talk with the transplant, oncology, and thoracic doctors within the next couple of days. I find it very interesting that now UT Southwestern doctors can do an RFA procedure for the lungs. I also find it interesting that now that I plan to go else where to deal with this nodule should it turn out to be of the AdenoCarcinoma family all the before mentioned medical disciplines would like to chime in on my pending decision. I think I will sell advertisement space and call the the decision.

Healthy Spirits: Halloween Hours

On Sunday, October 31 we will be open 11AM to 11PM.

Healthy Spirits: Beer of the Month Club November 2010

...now ready for pick-up!

cheers,

dave hauslein
beer manager
415-255-0610

Healthy Spirits: New Arrivals

1. He'brew Jewbelation 14 Ale (14 malts,14 hops,14%ABV!)

2. He'brew Vertical Jewbelation Gift Pack (Anniversary Ales 8 through 13 re-brewed, along with the 14 and a barrel aged blend of all 7 beers that's only available in this pack! Limited quantities.)

3. Nectar Ales Black Xantus

FYI***If you're looking for the Jolly Pumpkin La Parcela grab it while you can, it's almost gone!

cheers,

dave hauslein

beer manager

415-255-0610

Feeling Better after a Rough Patch

My coughing from allergies is way better and I’m crediting that to our first snow fall.

As this past Monday wore on, I thought … is my urine getting darker? Sure enough, Tuesday morning, my first pee of the day shocked me. It’s was a dark brown color. I contacted the research nurse and she asked if I was turning yellow … jaundice. I said no. Great she said, we’ll do blood work on Thursday when we see you. She reminded me to drink 6 to 8 glasses of water every day. And sure enough, after drinking a whole bunch of water … my urine is now clear again.

Apparently my billirubin levels were sky high to begin with and that combined with the Brivanib I just started; my liver just isn’t able to properly remove the bilirubin from my body. It then exits through the kidneys and into the urine turning it dark brown.

On recent deaths

In the past week I have attended two funerals and two shiva minyanim for three different people. One was a man who died at age 89 after escaping Nazi Germany in his late teens, arriving penniless in Seattle, rebuilding his life here, and becoming a leader in our community. The second was a Russian woman, age 79, whose four daughters, and eventually she and her husband, fled the USSR in the 90s for Israel and Seattle. The third death was a woman, age 68, whose ovarian cancer returned earlier this year.

The first two, that's the way it's supposed to be. You live a long, fruitful life; have the opportunity to tell the ones you love how much they love you and hear it from them in return; and move on to the stage of being. The third, who died from cancer -- that's NOT the way it's supposed to be.

What struck me most was how three different people all said the same thing about two of these deaths: how they left things unsaid and wished that they had written that card, made that phone call, before it was too late. One woman said as much in a eulogy she gave.

I know most people don't want to acknowledge that death is a part of life, that we should always maintain hope. But too many of us let our fears get in the way of telling people how much they mean to us. The woman who died of cancer? I believe she would have been overjoyed to get those cards and notes from the people who couldn't bring themselves to write. The young man who wanted to record his grandmother's stories admitted that he let small, unimportant things eat up his time.

Why can't we all tell those we love what they mean to us, as frequently as possible? There is no dress rehearsal for life, and when we let our fears or our busy-ness get in the way, we miss out on the authentic experience of loving and being loved. Isn't this what life is all about?

50 million

I just found out about this site. Some of us are lucky enough to be insured. According to a recent U.S. Census report, more than 50 million or 16.7 percentof our fellow residents are not. They might not be able to afford insurance, but hey, they can always buy the wristband, for $3.99. How can we call ourselves a civilized country and not have public health care for all?

to breakup or stay together (UT Southwestern or Baylor medical???)

As unemotional as I would like to make this post, that, is something I can not do. I am pretty pissed about several aspects of my care and condition management at UT Southwestern. Before I address the medical elephant in the room I have been advised to not burn bridges... my response is bridges burn both ways.

Let's tackle the elephant.

• I am disappointed with the lack of communication between oncology, thoracic surgery, and the lung transplant clinic.
• I am pissed and saying what the hell as I learn more about RFA as a minimally invasive procedure that can be used to kill cancer nodules in the lung(s).
• If you recall I had a 1.5 cm nodule surgically removed by a wedge resection 3/2009. I have recently learned that the thoracic surgeon can do RFA procedures. My beef is why wasn't I offered this treatment option . Why did they elect to take almost 1/3 of my right lung.
• There is are no plans in place as to how recurrences will be dealt with.
• Oncology won't help me get my info. together to pass it on to UCLA so I can possibly have the RFA procedure done on my 5mm nodule in my right lung.

Short Rant I am getting feed-up I am not willing to give anymore huge chunks of lung tissue to research.

RFA Links:

http://www.ncbi.nlm.nih.gov/pubmed/16366374

http://www.radiologyinfo.org/en/info.cfm?pg=rfalung

http://www.lcfamerica.org/blog/?p=90

Hadassah and Komen

Hadassah is racing for the cure in Jerusalem with Komen. The city was awash in pink lights on the walls of the old city and on the Shrine of the Book (which many say resembles a giant breast anyway).

This is all a little too pink for me. I will be very curious to read the press coverage. Will they even mention women living with metastatic disease? The 40,000 American women who will die of breast cancer in 2010? Or will the press focus on prevention and early detection, both important topics, but NOT A CURE.

Why are we still racing? When will someone find a cure?

Mammogram by Lady Ta Ta ~ Video

I wanted to share a fun video that I first saw on my friend Dee's mets blog … Dee’s Updates.

The four and a half minute video is a parody of the Lady Gaga song "Poker Face" inspired by the folks at Susan G. Komen Foundation.

what i would miss

I just did an interesting writing prompt from Old Friend From Far Away by Natalie Goldberg:

"Tell me what you will miss when you die."

The instructions were to write for ten minutes without censoring yourself. Here's what I wrote:

My kids

My spouse

My family

My friends

My dog

Beautiful fall days

Walks along the canal with my dog

Getting lost in a book

Taking a nap on a cold afternoon

Knitting with friends

The feeling of euphoria when I write something good

Music

Good food

Laughing

Wondering at art

A hot bath after exercise

Physical intimacy (all kinds)

The happy feeling when I unexpectedly run into someone I like

Learning new things

Aha! moments

Seeing people do good things

Being proud of my children

Noisy gatherings around my dining room table

Doing fun things for the first time

Doing familiar things that make me happy

Connecting creatively or intellectually

Making new friends

Having old friends and family members who 'get' me

Scrabble

Fresh starts

Clean sheets

Small kindnesses

Spectacular acts of bravery

Feeling proud of myself

The way the pavement smells after a summer rain

The possibility of tomorrow

What about you?

Update on how I’m Feeling

So I thought I better do an update on how I’m feeling outside the clinical trial side effects. For the last couple of weeks I’ve been struggling with what I think are environmental allergies. It started out with wheezing during the night which I’m treating with a nightly dose of Benadryl.

I don’t wheeze anymore but during the day, my chest feels so full. I cough and later have some shortness of breath. I find this especially when laying down or getting up from a laying down position. I’ve coughed so much I’m hoarse. My nose is a bit stuffy and my head feels a bit headachy.

I’ve also been experiencing the chills. This started a couple of days after getting my flu shot last week. I’m not too worried about this because my temperature remains normal.

Other than that … there is fatigue. I really have to plan and monitor my activity so I don’t over tire myself. If I do, I easily become emotional, anxious and nauseous.

What Helped and What Didn't?

If any of you who read my blog have time, I'd love your input!  Many people who have friends newly diagnosed with appendix cancer contact me to ask me how to best help.  Many have never had a close friend with cancer and have never been cancer patients themselves, so are at a loss.

I try to tell them what was helpful from my experience, but I'd like to know what you thought was helpful also (just leave comments here or email me).  Did people do and say things that were helpful to you?  Did some inadvertently do the wrong things, even if they were well-meaning?

I'll itemize here what was helpful, and not helpful to me:

• I appreciated anyone who helped me with my kids, both watching them and supporting them emotionally.  My mother-in-law was my godsend, she watched my kids when I had to leave the state for appointments and for surgery, and was always their "counselor".  Teachers at school also paid special attention to my kids and knew to let me know if they were struggling in any way.  The worst part of my diagnosis was the effect it had on my husband and kids, so I greatly appreciated anyone who supported them.
  
  
• I was grateful for offers of help with physical things, but was also glad that everyone respected my right to do all of the things I normally did like cooking, cleaning and shopping; I wanted to do a lot and didn't want to be treated like an invalid after my surgery.  People respected that.
  
  
• I appreciated a donation I received from my church and the many phone cards people gave me; cell phones weren't quite what they are now when I was diagnosed, and everyone wanted to be able to help me communicate with my kids when I was gone.
  
  
• I appreciated the many cards and notes of support I received.  I also appreciated when people gave me books or articles about people who had survived a cancer diagnosis.
  
  
• I appreciated that my husband was always there for me, loved me unconditionally and was my "rock". He stayed at the hospital as long as there were visiting hours, but didn't stay the night (that would have made me feel badly).  He played cards with me and walked the halls with me and wouldn't eat in my presence if I couldn't eat while I was in the hospital.  He let me do as much for myself as I could.  He always let me know he could take me to chemo if I wanted him to, but also respected me when I wanted to transport myself.  He never treated me like an invalid or "sick" person, but he went with me to all of my doctor's appointments.  He helped me access my lab and CT results within 24 hours of my tests so I wouldn't have to wait for my doctor appointments to learn the results.
  
  
• I got very frustrated with those who felt I always had to "think positive" to survive.  My life was a mess after I was diagnosed.  Sometimes I felt depressed, afraid and angry, and I wanted to be able to voice that.  I didn't always feel positive but felt I always had to put on a positive front as so many insisted I wouldn't survive if I didn't "stay positive".  It always occurred to me that if I had a broken leg or pneumonia, no one would have told me I had to have a positive attitude to get better....they would have told me to go to physical therapy, eat well, rest, drink lots of fluids etc.   They would have understood if I was sad or in pain or depressed with being ill. My best friend helped me the most, I didn't have to put on a positive front with her, I could always express how I really felt when we talked.
  
  
• I'm not sure why, but  many told me when I was first diagnosed about all the people they had known with cancer who had lost their battles.  I was puzzled at why they felt they had to tell me that?  It happened multiple times.
  
  That's all I can think of right now, but I know many of you had people who supported you, and maybe some who inadvertently did things that were not helpful.   If you share them here, I think many who ask these questions will appreciate your input.  Thank you in advance!
  

Three days on Brivanib

So I’ve been on Brivanib for three days now and I thought I’d share what I’m experiencing. About 40 minutes after I take it, I feel woozy and drunk like, to the point that I should not drive. Even my laptop screen is blurry. About two hours later and after I’ve had bite to eat, the dizziness and lightheadedness pretty well disappears and I feel quite normal. 

I think I’m already getting a bit lazier because the couch is getting just a bit too comfy.

This change in my treatment is causing me to change up my blogging schedule a little. I used to like writing my blog every day with my morning coffee. But now I have to lay out some thoughts the night before when I’m thinking clearer and can string some thoughts together. I’ve also made a mental note not to schedule any morning appointments, for now anyways.

Healthy Spirits: The Newness.

1. Jolly Pumpkin La Parcela

2. Jolly Pumpkin Bam Biere

3. Mikkeller Black Tie

4. Ellezelloise Saison

5. Drie Fontinen Schaerbeekse Kriek(2008 and 2010 vintages)

cheers,

dave hauslein
beer manager
415-255-0610

The "M" word

This article from the Huffington Post just came across my desktop. The author spoke with Musa Mayer, an author and longtime advocate for women with metastatic disease, who said that "It is as if these metastatic women are invisible, that they literally don't count," she indicated. "And when we don't count people's needs, we can't provide or plan for them." 

My Final Press Interview

Ok, this is the last newspaper article with me in it … this week I’m in the Edmonton Examiner. The story is still part of me helping the Canadian Breast Cancer Network with their campaign to promote Metastatic Breast Cancer Awareness Day. 

If you’re in the Edmonton area, I invite you to pick up a copy of this week’s paper or go here for the online version to read what I had to say. Working with the reporter from the Examiner was nothing but a pleasure. Not only did she help me get the message across accurately but she came by to take the lovely picture of me and my dog Daisy. 

I’m kinda glad this promotion stuff is all over now. I’m exhausted.

My "twin"

A friend told me to go look at a poster in the Wedgwood 8 Limbs yoga studio. She was sure it was a photo of me! I stopped by today, and the woman in the poster could be my twin. Chiara Guerrieri is a yoga instructor at the Phinney Ridge and Wedgwood 8 Limbs studios. She also has her own web site.

Don't we look alike?

Eight Hours at the Clinic

I was pleasantly surprised when I got to my room on the ward and saw two beds … yes believe it, semi-private. My roommate was a lung cancer patient who was also there on a study drug. The nurse said, you will be here the longest … you get the bed closest to the window. Oh my, that was music to my ears. Being up so early in the morning, I was feeling wiped already so now the thought of crawling into a bed with a warm blanket was simply divine. 

Anyways, once we all got organized, the nurse took eight vials of blood through my PICC line. I was pretty excited about that because my hand was still badly bruised from my visit to the lab last Friday. She checked my bp and then gave me my first four tablets of the trial drug Brivanib Alaninate. I had blood drawn three more times throughout the day, along with having my bp checked. 

I was so comfy in bed that I skipped breakfast and just watched DVDs and checked email. As lunch approached, I decided it was time to get up and find some food. As I got up and walked down the hall to the cafeteria, I sure felt woozy, like I had a couple of drinks. 

At the end of the day, I was sent home with a log book and a three week supply of Brivanib. They want me to take it once a day, everyday at exactly the same time. I’ve settled on 8:30 in the morning and they can be taken with or without food. Because of the clinical trial the nurse warned me about taking any other drugs and to consult her first. She suggested if I do need to see a doctor, that I bring my clinical trial consent form with me.

Another article

A few months ago I was interviewed for an article on lingering effects on life after (or in my case, with) cancer for Health To You magazine (h2u). h2u is a membership organization providing "benefits and resources that support your health and well-being." The article came out recently and I received a copy of the magazine from the author.


The article is called "A lifelong journey: How cancer survivors pick up the pieces." Although I was not featured on the cover, the table of contents on page two shows a picture of Bobka and I (he's nosing my face) as the draw for the article on page six. There is also a cute photo of me with both dogs at my section of the article. In this one, Pumpkin is licking my face.


The article itself features four people: a man with advanced melanoma that has spread into his bones and liver; a woman with advanced, squamous cell carcinoma on her tongue; a woman who developed lymphedema after her breast cancer surgery; and me. The man and I are the only people interviewed who have metastatic disease -- cancer that has spread outside the original area of diagnosis.


I was happy to talk with the author and she did a great job of listening to me and telling part of my story in this article. 

Busy week

I have been so busy this week as I feel better and better on this chemo break.

On Tuesday I had my regular weekly meeting with the synagogue's senior staff.

Wednesday was the funeral of one of our shul's past presidents and longtime members. I also made sesame cold noodles for the meal of consolation. The family has one vegan and that mourner needed to eat as well.

Thursday was my monthly treatment with zometa, the bone-strengthening drug that I've been on for years. I went to Swedish's Ambulatory Infusion Center at the Cherry Hill campus this time and was happy to see two of the nurses who have been taking care of me for many years. Then I went to my support group, and last night there was a synagogue board meeting.

Today I will be interviewed by Q13 Fox as part of a group of young women with breast cancer. The same reporter did a story on us a few years ago and wanted to follow up now. I will post when I know the program will air.

My lymphedema is acting up again, and I have begun to wear my sleeve and glove during the day and my (new-ish) JoviPak arm sleeve at night. This may be a side effect of the Faslodex, or I may have increased edema for other reasons, but clearly my season of no garment during the day/compression at night is over for now.

serendipitous cycle

I feel like a little kid again.

On August 15, I won a bike.

I was at the Ottawa Folk Festival and I bought three raffle tickets for five dollars. I told several people that I planned to win the third prize - a Kona Africabike 3, donated by McCrank's Cycles.

And then I did!

And here's the interesting part. I really, really wanted a new bike. I've been riding the same diamond frame (commonly called a men's bike) hybrid for almost twenty years. It's probably the wrong size for me and had started causing me neck and shoulder pain when I rode for more than a few minutes.

Over the summer, I test rode at least a dozen bicycles from four different bike shops. I came close to buying three times but each time, something held me back.

Our finances are really tight right now and I would have to commit to any bike I bought for a long time. And although several bikes I tried seemed fine, I didn't really love any of them. I had begun to think that I was just being too picky. I had pretty much resigned myself to spending a bit of money to fix up my old bike when the week end of the Folk Festival came around.

And then I won a bike that was nothing like any of the bikes I'd test ridden. And I love it.

With it's heavy frame (42lbs!) and big tires, it feels solid and safe to ride. I love how the coaster brakes (the kind where you stop by pedalling backwards) allow me to slow down gradually (there's a hand brake that helps me to stop quickly when I need to). I really only ever used seven speeds on my old bike, so I haven't really minded that my new bike has only three. The step-through frame means I can wear whatever I want to go cycling (and means that I have fewer excuses not to ride). And the "sit up and beg" style of riding means no pain and whole new way of taking in the world.

It's so much fun to ride! As I did all those test rides this summer, I kept waiting to fall in love and it just didn't happen. It turns out that the bike I needed was one I had been refusing to even consider (and that some of the features I had rejected are the ones I love the best).

For the first few days after I brought my bike home I'd sneak out to the garage just to admire it. I've even named it Steel Horse (because it's such a beast and after the song "I Am An Excellent Steel Horse" by Rock Plaza Central, a band I heard for the first time at this year's folk festival).

I've noticed that people smile at me when I ride my bike. I think it's because I'm grinning like an idiot.



When I was seven years old, I had a red bike with a yellow banana seat. That was my first bike and I've never loved another bike as much. Until now.

For every two Africabikes that are purchased, Kona donates one to it's Basic Needs program in Africa (these bikes were designed to be virtually maintenance free and to be easily ridden on the most rugged of roads). These bikes have been used to help health care workers to deliver HIV/AIDS drugs and to enable girls to travel longer distances to get to school.

If you live near Ottawa and are thinking of getting an Africabike (or any Kona bicycle) for yourself, please go to McCrank's Cycles. Peter Conway is a really good guy (and very generous!), who provides great bike service. He deserves your support.

Healthy Spirits: New Arrivals

1. Midnight Sun Cohoho Imperial IPA (brewed with brown sugar, honey, and juniper berries)

2. Port Brewing High Tide Fresh Hop IPA

3. Port Brewing Panzer Imperial Pilsner

4. St. Bernardus Christmas Ale

5. Weihenstephaner .5l and 1l glass mugs

cheers,

dave hauslein

beer manager

415-255-0610

Finally ... I’m on the Clinical Trial

Yippee yahoo … I’m on Brivanib Alaninate!

Yesterday at the clinic, the nurse came checked my blood pressure. After that the Onc came in and gave me a physical exam and discussed my health in general. I said other than being a little tired, I was feeling pretty good. He looked at all my test results. Everything looked good except some of my liver numbers were high … sky high. He said I made it in … just under the maximum … with only a few points to spare.

Long story short, the nurse asked when I’d like to start and I said … ASAP. Excellent, we’ll see you tomorrow morning at 8:00am … bring breakfast and lunch. Your appointment will last eight hours and blood will be drawn every two hours. Here’s hoping my PICC line can be used for that.

A WomansDay.com Article

About a week ago I received an email from a writer from WomansDay.com. She said she was working on a story for WomansDay.com about breast cancer bloggers and she wanted to include me in the article.

She said she wanted me to write something about my experience with breast cancer. Also to say something about the impact I’ve had on other breast cancer patients and the cause in general. She said she wanted my personality to shine through and to give their readers an honest view of what I’m currently going through and what I have already gone through.

I feel so honored to have been offered the opportunity to share my story on such a large stage. To see the article ... click here.

Healthy Spirits: LOST ABBEY DELIVERANCE

A new, limited release blended, barrel aged beer from Lost Abbey! Part bourbon aged Serpent Stout, part Brandy aged Angel's Share. Limited quantities, no bottle limits!

cheers,

dave hauslein
beer manager
415-255-0610

ottawa october

All photos: K. Bruin

In October, I live in the most beautiful place in the world.

On, Thanksgiving week end (two weeks ago for those of you reading outside of Canada), my family was so fortunate to have a wonderful guest. My friend K. and I have been friends since we were 17 years old. We met as new room-mates in Room 1 of McLaughlin House at Lester B. Pearson College of the Pacific. She was there representing the Netherlands and I hailed from Hawkesbury, Ontario.

We became friends pretty much instantly, through struggles with friendships, school and heartbreak and whole lot of fun. We travelled to Vancouver together and she once took me out on a sail boat into the bay so I could engage in a little primal screaming.

In my second year, after she'd graduated, I missed her terribly. We've been lucky though. Work has brought her to Canada three times in the last five years and we've been able to spend time together. My family has fallen in love with her. And I can't wait until next year, when she comes back.

When we were at school together, we lived in a very beautiful place and I know that K. loves this country almost as much as I do. But until this year, she'd never seen Eastern Ontario on a beautiful fall day.

This year, we had a chance to rectify that and we took advantage of the long week end and the glorious fall weather to go for a walk in Gatineau Park. K. was the only one of us who took photos on our outing and she's given me permission to share them with you. My only regret? There are no photos of the two of us together. We'll have to rectify that next year.

C and me, we're attached at the hip

I had scans yesterday.

Despite having a total thyroidectomy, lateral neck dissection, and radioactive iodine, thyroid cancer is still partying it up in my chest cavity. Awesome! We's friends fo' life.

LUCKILY, papillary thyroid carcinoma grows very slowly, so it isn't an immediate threat to my health. I'll probably have to have RAI again in a few months.

I can live with this, it's cool. It's not Ewings. My problem is... the extent to which my illness is affecting my 20-something life. It's fucking shit up. I should be half-way to being the next Anna Dello Russo now but I'm stuck in bed in my tiny rented room in SF DOING NOTHING. At least, that's how it feels.

In reality, I am doing everything I can. I am taking supplements, probiotics, eating well, stretching, studying my industry, trying to keep up.

My problem is that I want too much. My dreams have always been massive. I've been brought up with the notion that if you want something, work hard and you shall receive. It's a nice idea but it's ultimately bullshit. So much depends on random circumstance.


Will I ever be able to set cancer aside and continue with my passion, my work, my life?

fuck if I know.

I hope so.

The Flu Shot

Yesterday D and I drove to the local mall to get our flu shot and get a bite to eat at the food court. We were the only ones standing in line. We started talking to the gal who was directing folks to each of the nursing stations for their shots. After a bit of small talk she said she was a trained psychologist and was also on the lookout for people with high anxiety.

She directed us to a nursing station were D and I sat together. The RN said we’d get a vaccine for three types of flu including H1N1. I said that I’d like to get my shot in my thigh because I have lymphedema in one arm and a PICC in the other. So the RN ushered me to the back where they had a screen setup.

After my shot we went back to meet D who’s biggest concern at that point is if he could get a sucker in case he started to cry. The nurse and I only chuckled a little bit. She said we don’t have suckers this year … only stickers. Just then we saw a mother and a two year old in tow who just got his shot. He was smiling and waving to everyone as he passed by. What a little trouper.

After the mandatory 15 minute wait for a negative reaction, we headed over to the food court were we felt like having Chinese.

This morning, my thigh was only mildly sore where I got the shot … if this is all it is … I’m ok.

omg

Cancer Bitch in the news

It's hard to complain about Pinktober (well--I want to complain about that neologism) when I'm one of the beneficiaries. The Trib picked five breast cancer memoirs to describe and listed The Adventures of Cancer Bitch first. So, get out there and buy cancer memoirs. If you don't, the [fill in the blank] will have won.

Men Against Breast Cancer on Fox News

Not every woman with breast cancer has this kind of man in her life. Too many men leave their women during or after a breast cancer diagnosis. I am blessed that Rik is one of the good guys. He attended a national conference sponsored by MABC a few years ago.

Let’s Hear It for the Boy: Men Against Breast Cancer

By Colleen Cappon

Published October 15, 2010

FoxNews.com

Every October, the flood of pink ribbons and information about breast cancer can mean only one thing: Breast Cancer Awareness Month.

We hear about the 200,000 women who fight breast cancer every year, and we honor those who lost the fight.

What we don’t hear about are the men standing behind those women, who are just as affected by their cancer diagnoses.

Marc Heyison was one of those guys. In 1992, when he was 29, he heard what he calls the five most horrific words he had ever heard: “Your mother has breast cancer.”

Heyison is 47 now, but he still feels the agony of that day. He remembers that he felt like a little boy, scared that his mother, Gloria, was going to die. His family rallied around the woman who was “their foundation,” and they braced for the scariest ride of their life, doing all they could to be there for her.

“One of us was always there for my mom’s treatment appointments, and I thought that was the norm," Heyison told FoxNews.com. "But when I saw women there by themselves, I couldn’t understand that.” 

Heyison’s experience taught him how tough it was to provide the right kind of support for his mother. Seven years later, he started Men Against Breast Cancer (MABC), a national nonprofit organization whose mission is to educate men on their responsibilities as caregivers. Soon after, MABC became the first organization of its kind to receive a $1.1 million grant from the Centers for Disease Control.

“Men are incredible caregivers when given the opportunity. But they are underserved in education about support,” he said.

Since starting MABC, Heyison said he has been overwhelmed by the number of men who show a need for support for themselves, that they unfortunately find is not addressed in other places.

“It’s bittersweet, because I am proud of what we have accomplished, but there should be a thousand organizations like us, it should be the norm,” he said.

Dr. Cynara Coomer, Fox Medical A-Team member and chief of breast surgery at Staten Island University Hospital in New York City, told FoxNews.com that a spouse or partner’s support is crucial to a smooth recovery from breast cancer.

“Just as it is for the woman, it can be overwhelming for the partner to get diagnosed with cancer; and in addition to that have it be such an emotional decision in what kind of treatment to have,” Coomer said.

Coomer encourages counseling for her patients’ partners, especially if the treatment option includes amastectomy, which she said can hurt a woman’s self-esteem.

Chris Wrobel, of Prior Lake, Minn., found out firsthand how important his support was when his wife, Kaylynn, was diagnosed with an aggressive form of breast cancer five years ago during a baseline mammogram.

Wrobel, 44, feeling shocked and lost, tried to find the help he needed for himself, and found the majority of the information was for patients, not the caregiver.

“At the clinic she went to, they said, ‘Here is some information,' and it was a tri-fold paper that said what to expect, and to be supportive," he recalled. "Well that’s not really enough. You need more than that. I tried to get help, but there was nothing there to go to.”

Kaylynn found out about MABC and told her husband he needed help dealing with her illness. He made the call, and five years later, he is on the board of directors.

“I felt like, I’m not by myself. All of these guys are in the exact same boat. We are all in this position together,” he said.

Wrobel met with other men who could relate to how he was feeling and could discuss the right things to do in the toughest situations.

“What destroyed me the most was the first day of chemo; holding her hand, saying, ‘Honey I love you, we are in this together,’ and knowing they were pumping her full of poison to kill the bad stuff, and that it was killing the good stuff too,” he said.

Wrobel and his wife made it through the chemotherapy and a double mastectomy. Now, he said, he wants to help other men realize that in order to help their loved ones, they need to help themselves.

“It’s frustrating that I have to watch my fellow man go through what I have gone through and not have help. People haven’t caught on. After it’s over, it’s not the same life you had before, it is different,” he said.

A common theme that both experts and men who have gone through cancer with a loved one can agree on is that generally, when men see a problem, they tend to feel like they can fix it. This is an issue when faced with supporting a breast cancer patient, where the caregiver must stand by them and let the treatments do the work.

Ask any breast cancer survivor, and they will tell you that their doctors scare the daylights out of them, but they are their lifeline, and give them hope.

In addition to regular checkups from a primary care physician, women generally see a breast surgeon, a radiation oncologist, and a medical oncologist. From that bare minimum of four doctors, there usually comes a second opinion from other specialists. Many women end up consulting with as many as 10 doctors—and that means a lot of appointments and even more scheduling issues.

“We teach men that they can be good about getting tasks accomplished — taking notes at the doctor’s office and making appointments, so she can concentrate on her treatment,” Heyison said.

Coomer said in her experience, one of the most important things a man can do to support a woman during breast cancer treatments is to make her feel beautiful.

“Remind her you love her for who she is and not what she looks like,” she said.

MABC addresses all different aspects of support for men, from sexual intimacy, to fear of death, and even when to just get out of the way.

“You don’t want to baby her. If she wants to cook dinner, you’ve got to get the hell out of the kitchen. It gives her a sense of power and normalcy,” Heyison said.

Overall, women need to know that men feel fear and helplessness, and are afraid they are going to die; it makes them feel connected to the person they love.

“A big step is just admitting the fact that strength isn’t necessarily making a muscle, but just telling her that you are scared,” Heyison said.

Russell Cooks found his strength when he learned that his ex-wife Celena was diagnosed with breast cancer at age 37. He said he knew it was God’s plan for him to step up and support her.

Although they were no longer together, Russell traveled 80 miles each way, every day, to her home in Atlanta to take care of Celena and their three children.

“The most difficult part was that she was in a place psychologically where she was not feeling like a whole person, not feeling as pretty; feeling like a part of her was gone,” Cooks said. “I went to MABC, and it helped me to be able to deal with that.”

At the end of her treatment, Cooks’ wife underwent a bilateral mastectomy, and he never left. Five months later, they remarried. Now Cooks, also a MABC board member, calls their fight against breast cancer a “family crusade.”

“For men, there is no way to avoid the fight; you are going to be part of it no matter what. The sooner we get involved, the better results we are going to have, and give women the support system they need,” he said.

Photos of my day on Parliament Hill

Hey everybody - I finally got around to doing a blog showing off the press photos taken on Parliament Hill with the Canadian Breast Cancer Network gals and me meeting our parliamentarians.

Because of the CBCN, the folks on the Hill have a better appreciation of what all us METs gals are going through.

This was a once in a life time experience and it was so cool because they were really listening to what we had to say. I’m so proud. 

Here is a shot of me in conversation with Senator Vivienne Poy. To see all 19 pictures, click here.

Breast Reconstruction Timing: Immediate vs Delayed Reconstruction

With so much to think about after a breast cancer diagnosis, many patients facing mastectomy do not fully understand how the timing of breast reconstruction influences how the reconstructed breasts will ultimately look.

Breast reconstruction can be performed at the same time as the mastectomy ("immediate reconstruction") or a while after mastectomy ("delayed reconstruction").

When the mastectomy and reconstruction are performed at the same time, a skin-sparing mastectomy can usually be performed which saves the majority of the natural breast skin envelope (except for the nipple and areola). Only the actual breast tissue under the skin is removed. The reconstruction then "fills" this empty skin envelope. In some select cases nipple-sparing mastectomy can be performed. This preserves the nipple and areola as well as the breast skin.

Skin-sparing (or nipple-sparing) mastectomy and immediate breast reconstruction produce the most "natural" results with the least scarring. Skin-sparing mastectomy and immediate reconstruction is therefore preferred whenever possible and should be the goal for breast cancer patients with early disease (stage I or II).

Delayed reconstruction unfortunately leaves more scarring (typically) and the final breast is less likely to look like the breasts Mother Nature provided. Common reasons to delay reconstruction include advanced breast cancer (stage III or IV), inflammatory breast cancer, the plan for radiation therapy after mastectomy, and lack of access to a reconstructive surgeon.

The difference in scarring between immediate and delayed breast reconstruction can be seen in these breast reconstruction before and after photos.

Ultimately the priority must always be "life before breast" - obviously the breast cancer treatment comes first in terms of priority. However, all other things being equal, there will sometimes be a choice to be made between having the reconstruction performed with the mastectomy or some time after the mastectomy. Whenever possible, I encourage women to seek immediate reconstruction for the best cosmetic results.

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Dr Chrysopoulo is a board certified plastic surgeon specializing in the latest breast reconstruction techniques including the DIEP flap procedure. He and his partners perform over 500 DIEP flap procedures per year and are In-Network for most US insurance plans. Learn more about your breast reconstruction options and connect with other breast reconstruction patients here. You can also follow Dr C on Twitter!

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