LIVESTRONG:

And in June 2013 we are back in the revolving door of doctors, this time for my heart. So the focus has shifted, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide strength to others & will help to strip away the fears we each experience.


LIVESTRONG: I am strong. I am loved. I am healthy. WE WILL WIN!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

Wednesday, November 26, 2014

How is ICD Data Captured?

Very interesting explanation of an ICD (Implantable Cardioverter Defibrillator). Although mine is a St. Jude Model, rather than Medtronic. It shows how the ICD is monitored and tracked by a doctor and the device manufacturer.

But did you know that patients do not have access to this information, except when seeing their cardiologist once a quarter or so. And then the copy of the report is many pages and difficult to decipher by the lay person/patient. And usually any important information has happened weeks or months earlier. Sure would be nice to have this accessible to the patient on an ongoing basis, perhaps through a secure website. Just saying!!!


Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Monday, November 24, 2014

Demystifying Ejection Fraction

You hear me talk about EF (Ejection Fraction) frequently. Basically, it is the key factor in my heart failure. This article takes a very simple approach to explain exactly what EF is and how it is measured. 

Based on my echocardiogram of January, my EF is still at 18%, which is considered severe heart failure. And based on my recent cardiologist appointment of a couple of days ago, although I am feeling pretty darn good these days, my ICD still records some series of weeks during each quarter when I am in "heart failure". I believe this means that is when my heart has trouble doing its job, even with the help of all the meds I am on and the ICD that will do pacing if needed (before shocking for heart failure). So while I often feel pretty good these days, it is a reminder that I need to stay vigilant with my low sodium diet, keep active, and stay healthy. Every day is a gift and I cannot forget that it is often very fragile, and we cannot be too careless with it -- even when that means simple, tiny steps that can mean life and death.

I hope you find this article. useful.

With each heartbeat, the heart contracts (or squeezes) and relaxes. Every contraction pushes blood out of the two pumping chambers (ventricles). When when heart relaxes, the ventricles refill with blood. The ejection fraction (EF) refers to the amount, or percentage, of blood that is pumped (or ejected) out of the ventricles with each contraction. This percentage, or EF number, helps your health care provider determine if you have heart failure or other types of heart disease.
Ejection Fraction
A normal heart pumps just over half the heart's volume of blood with each beat – a normal EF is 50 to 75 percent.
Here is a link to the full website:

http://www.hrsonline.org/Patient-Resources/The-Normal-Heart/Ejection-Fraction#axzz3HbLWrz18

Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Monday, November 10, 2014

YSC Tour de Pink, West Coast

Last month, Mark and I were invited to participate in the 2014 Tour de Pink West Coast (TdP), put on by Young Survivor Coalition (YSC) It was an honor and a privilege to be part of the Cadence Sports staff team working this event.

2014 Tour de Pink West Coast was held October 17 - 18. The ride went from Paso Robles, CA to Point Mugu, CA. The three-day ride took an inspirational journey along the coast and through California's wine country. TdP is a rolling community, inspiring those who ride and work the event, and supporting young women. Riders choose to ride all three days (200 miles) or for one day.

Young Survivor Coalition (YSC) is a global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

YSC was founded in 1998 by three young women who were under the age of 35 when diagnosed. They were discouraged by the lack of resources available and the under-representation of young women in breast cancer research. Today, YSC is the go-to organization for young women facing a breast cancer diagnosis.


Here are some of our photos from the Staff side of the event.

Pizza night the evening we arrive and before all the fun began.

Some of the schwag that went into the goody bags for the riders.

First day ... and they're off.

Getting ready for afternoon check-in of riders.

Boston Strong

Friends & family greet riders in Solvang 


Greeting Dad at the finish line

Final day ends on the beautiful beach of Point Mugu

My new friend, and rider, Debbie, and her friends.


Here are some images from the event organizers.

Sure hope I have the energy to participate again next year. The event was very rewarding, but involved long, tiring days of all staff members. I pulled it off this year, but maybe once was enough. Time will tell.


 Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Tuesday, October 28, 2014

Another Milestone -- 1 Year With ICD

Today marks my one year anniversary with my nearest and dearest "buddy", my ICD - Implantable Cardioverter Defibrillator. (Click on link to learn about this device).
A year ago I wrote about Procedure Day as I looked forward to the surgery to insert the ICD and then Feeling Liberated as I no longer depended on the LifeVest for shocking/defibrillating my heart should the urgent need arise.

It was a long and very slow road after surgery. I was pretty ill for 4 full months as my heart continued to struggle to keep fluid in check and I was constantly out of breath, tired, and had horrible indigestion. The good thing was it helped me to continue to drop weight for a total of 40 lbs lower from when the heart failure began. And even better was that finally in the Spring of 2014, after more medication changes and increases, I finally began to feel just "Ok". Within a few months, the preparations that were in the works for further surgery for either an LVAD or heart transplant stopped, and those were put on the back burner. But it wasn't until about April 2014 when I finally started to feel like a new woman with energy to get out and walk a few miles and enjoy my family and friends without the constant worry of what was around the corner. During this past year, I've had some scares with very rapid heart beats that my ICD has been able to pace and correct for me. I have not been shocked, thankfully; but my St. Jude ICD is there and ready should the need ever arise.

Today, I continue to get on with life enjoying my family and friends, camping, helping to care for our alpacas, working on my sewing and fiber projects, and snuggling with the three loves of my life, grandchildren Nico, Gaige, and Madeleine. My heart ejection fraction (EF) has not been tested since April, and at that time it was still in serious heart failure levels. But I feel good, and for now that is all that matters. The thought is that the EF has improved somewhat, and when the need arises to go through the expensive procedures again, we hope to get that good news.

So I am not out of the woods by any means, as those two before mentioned surgeries are still out there as future possibilities should the need arise. (Can't have heart transplant until 5 years cancer free, hence the LVAD option).   

But for the moment, this is what I prefer to concentrate on...

Sarah & Alura with the three grandchildren this past weekend, Gaige, Nico & Maddie


Gaige & Nico (each 3 yrs)

Alura with Madeleine (3 mos)

 Me and my sweetie on a recent camp trip

 Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Monday, October 27, 2014

Breast Cancer Awareness Month

Yes, the month is almost over! October is breast cancer awareness month, and I've been a bit torn about all the pink and all the hype. As another blogger I follow pretty closely does, I wonder if we are really doing all we can to find a cure, and save those with metastatic breast cancer. Early detection, mammograms, and self exam, do not seem to be really all that matters. But that seems to be what is promoted most of the time. 

I had mammograms every single year since I turned 30. Did that prevent me from getting breast cancer, infiltrating ductile carcinoma to be exact? No, I found my lump on my own, quite accidentally. I won't dwell on it all, but really, really want to see a cure for breast cancer. That seems to be the most important thing right now. I just don't see it being prevented. Just saying how I feel today, at this moment in time. 

Considering all this, and the fact that I feel really good these days and am not dwelling on cancer; I still think of it daily, and am involved in my own way. So before this month escapes, I do want to bring some attention to the topic. And the following three items are what I will share with you today.

First, if you know me, you know I am an avid fiber fanatic. Not the fiber you eat, but fiber from animals, such as alpacas, that you can spin with a spinning wheel, or knit or weave into beautiful garments and objects. Just check out my website, Facebook Site & Farm Page, or Ravelry site, and this becomes evident! One of the well-known knit designers, Cat Bordhi is supporting cancer in her efforts with her book, The Art of Felfs (felted footwear for families). Cat is donating 100% of the book’s and pattern’s income to the research lab of Dr. David Krag at the University of Vermont Medical School because she believes the cancer research he is doing will replace chemotherapy not that far in the future. As anyone knows who has been through chemotherapy, and especially me who has had heart issues most likely contributed to by chemo, this is most exciting research. Read all about Dr. David Krag, his research and past accomplishments, and Felfs, on the link above.

My second link is on the topic of Ovarian Cancer, a silent killer. Hopefully this short video will help to provide the basics you need to know and share cues that one should be aware of.

Lastly, A few days ago I received this email from Allison Kent of Lehigh University. Allison's message is self explanatory. I often get messages on the blog from someone promoting a product, etc. regarding breast cancer, and I thought this to be one worthy of sharing with my audience.

Dear Debbie,

My name is Allison Kent and I am a student at Lehigh University.  I am in a product development class and am in the process of reaching out to those familiar with breast cancer who may be able to take a few minutes to answer a quick survey for us.  My team is hoping to develop a product to help support and organize Jackson Pratt drains to help make recovery easier and less painful. Would you be willing to possibly take our quick survey, send it to your your friends or family, and possibly even post it to your blog? We are hoping to get as many responses from those familiar with the recovery process to make our product most useful and practical. 

Here is the link to our survey: https://www.surveymonkey.com/s/KVGQHDB. Thank you for your help!

Allison Kent
abk216@lehigh.edu

So, these are my public service announcements for the moment. My best to you all, especially those recently diagnosed, or continuing to fight the fight against breast cancer, or any cancer. Please try to take it one day at a time. All you can do is put one foot in front of the other, and go at your own speed. God Bless...


 Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Friday, September 19, 2014

3 Years Since Last Radiation

YES... today marks my three year anniversary from the last radiation treatment on my left breast. It's been a long haul since then, with many ups and several downs. But today I can say I am feeling pretty darn good, and enjoying life as much as possible. The heart failure was/is the biggest setback, but symptoms are in check, despite what the Echo cardiograms reflect. So I will roll with it another day.

Recently we came back from a lovely five-day camp trip with a few days on the Yuba River near Downieville, and a few more days at Jamison Creek campground just outside of Johnsville (near Graeagle). It was a lovely time of warm weather, cool river water, finishing a great book, and doing a bit of knitting. And tomorrow it is the first family BBQ of the summer (long overdue) and time to introduce little Madeleine Mae to the rest of the family.

LIFE IS GOOD. Enjoy it while you can. Make the best of each and every day.


Nico (3 yrs) with baby sister Madeleine (3 wks)

Fun camp time in our lovely little trailer

The Yuba River; a fun place to relax and cool off.

 Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Sunday, August 24, 2014

Earthquakes & Oncologists, Oh My...

I'll start with the oncologist update...

Back on August 14th, I had my 6 month check up with my Oncologist, Dr. Ian Anderson. A month or so before, I had a bone density scan, which is done every couple of years now. This does not test for cancer; it checks for bone density, which can be depleted after chemotherapy treatment. My density is slightly lower than the last time, but still within normal ranges. So this was very good news.

Everything else looks very good too! Dr. Anderson always talks about my heart and checks in to see how I am doing there, especially since the suspicion is that the chemo drug Adriamyacin is what keyed the heart failure response, in addition to family history of CHF (Congestive Heart Failure). He was happy to hear that I am feeling very well right now, and trying to be and stay active. So I will see him again in 6 months.

Now on to what seems to be first and foremost in our lives right now, and that is an earthquake measuring 6.1 magnitude and centered about 4.2 miles NW of American Canyon, CA; which is  about 20 miles from here. This hit at 3:20 am today and shook most of us up quite a bit. I thought for sure it was the Rodgers Creek fault, which runs right under us, based on the long violent roll of this earthquake, but it was not. But the sound of glass on tile sounded like lots of glass was breaking and the house was crumbling down around me. In actuality, a few things fell and made loud noises. And a heavy glass and wood mirror, which was propped behind my office door, fell down blocking the door closed. Probably the most significant was an old piece of heavy metal equipment hubby had stored on top of a file cabinet there, and several glass beakers in a similar place, all in the office, fell and dislodged other things. BUT NOTHING BROKE -- So much to be thankful for. But not so for others.  My sister in the East Bay lost chimney bricks, and friends living in the Napa area had whole cabinets topple over and lost bricks from their chimney, too. Then there are people in Napa who lost their homes to fire and those transported to the hospital in critical condition from falling debris/bricks, and store shelves emptied onto the aisle and stuff oozing everywhere, to name a few. I tell you, it was a very scary and helpless feeling.

This was not my first quake. I've survived a few for sure. One I will never forget is when I was about 4 years old living in Marin. We were at the Larsons house and I grabbed onto a floor lamp for stability, which of course was swaying to and fro. So that would have been 1957, and was the Daly City Earthquake, the largest quake in the Bay Area since 1906. Then of course there was the Loma Prieta in 1989, that one none of us will ever forget.

So when this 6.1 temblor hit at 3:20 am, the support began pouring in. Friends and neighbors nearby texted us to check in and see if we were ok or needed help. Facebook lit up with messages, comments, likes, and notifications flying everywhere... people asking how others were, sharing news of their surrounding area, sharing their experience, offering help to others; basically communicating and helping us all to feel at ease and know we were not alone in this experience. It was a good feeling and I am very grateful for the offers of help and the comfort that the communication gave me.

We live in a community of wonderful, sharing, supportive people. THANK YOU one and all. I would not have it any other way!

Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.

Tuesday, August 12, 2014

Another Week, Another Cardiologist

Today was my follow up appointment with Dr. Dhar, my local Santa Rosa cardiologist. I love both these guys, Dhar and Fowler (the Stanford cardiologist I saw last week). Both quite experts in their field, so very knowledgeable, but yet with a sense of humor and a gift of entertaining. Or maybe it is just me and how much I like them both and appreciate all they have done for me, AND their fun accents.

As with each of them, Dr. Dhar has the St Jude technician there for me and to read my ICD. My appointments are always on a Tuesday as that is when the St Jude tech is there. There are other types of ICD's so I presume those patients see him on a different day. Regardless, all checked out pretty good. Although he did bring to my attention two periods of heart failure, where there was too much fluid build up. One was mid May and one mid July. I do recall my weight being up a bit in mid-July but thought it was due to all the birthday celebrating. And to think of it, my sodium intake was probably higher during that time from so many meals out. But as the doc said, if I didn't really notice it, then don't worry about it. The important think is to stay diligent about my meds and low sodium consumption.

So I'm free and clear now until my Oncology checkup in a couple of days, and my next cardiology appointment in November, unless of course anything changes. That means play time with grandchildren, and fiber, and animals, and friends, and such.

Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting! I look forward to your comments.