What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).

So the focus has shifted yet again, 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 helpful information and strength to others & will help to strip away the fears we each experience.

I am strong. I am loved. I am healthy. I WILL SURVIVE!

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. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

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.


Tuesday, September 24, 2013

Great Cardiology Appointments & Weight Continues to Drop

I saw my regular cardiologist last Thursday, and to quote him, "Your heart is in nirvana". He then went on to say it was the calmest it has been so far. AND, no galloping heartbeat.

This weekend we were able to spend two lovely nights in Tahoe with dear friends. And on our way to the Sierra Mountains, we stopped in Davis to wish Alura and Stephan a happy birthday and to see sweet little Nico.  She turned 40 on Sunday and Stephan turned 39 on Monday. My how time has flown. Can it really be 40 years since my firstborn entered into this world and brought us the wonderful joy of parenthood? Our weekend away was so wonderful; and we even experienced the first light snowfall of the year. Thank goodness it was brief and light, as our friends daughter competed in the Ironman Triathalon on Sunday. We got to see her ride by during the cycling part of the event and she was all smiles and waves. Such a beautiful sight. Sadly we left a day earlier than originally planned as the altitude was a bit of a challenge for my heart. It was the right thing to do, though, as I am feeling much better today.

At my last appointment, we scheduled an Echo for next week to double check on if there has been improvement in my heart, especially the EF. BUT; should my echo show an EF of over 35, then it will be quite the miraculous improvement, according to the cardiologist; and I will not be eligible for an ICD implant.  I would imagine I'll be dancing a jig, if that happens. One can be hopeful, right? But then we'll need to see where we go from there.
Today I had the consult for the ICD implant with Dr. Chang-Sing, which is now scheduled for the end of October.  I will need a cardiac catheterization before implant is approved, but that will happen soon as well by Dr. Dhar. We'll probably talk about that when I do the Echo next week. Such fun!!! :-)

The ICD implant needs to happen soon as the 3 months on this defibrillator vest is coming up soon. So, all positive news; except the scary part about the procedures -- procedures are always scary, aren't they??? :-)

If nothing else, Hubby and I are taking time for some yummy dinners/lunches after my appointments. this also gives us quiet time to hash over what was discussed, and what are the next steps. Tonight was Pizzeria Rosso! It was so delicious.

After the implant, I'll need to be very careful for six weeks with lifting and reaching to make sure the leads into the heart and the ICD stay where they should. I will miss picking up my two little men until nearer the first of the year. I so wish I could; but we'll still spend time together.

More good news is that the scale continues to show weight loss. Woohoo! I'm into a new group of tens and that makes me very happy. Heck, maybe I'll need to go shopping for new pants soon. These are starting to droop and sag like some young kids wear these days.

Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!



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Tuesday, September 17, 2013

Looking Toward's the Bright Side

I guess there is always the bright side to something that, at face value, may not seem so positive. And I guess I am again finding the good in knowing that I have Cardiomyopathy and Congestive Heart Failure.

For one thing, I am down about 25 pounds from being diagnosed in mid-June. Yes, I have been carefully watching what I eat, but mostly so that I get very little sodium. You see, this disease causes my body to retain salt, which just compounds my symptoms. Considering salt is so prevalent in all foods these days, because we all use so many pre-packaged items in our daily "cooking", I am acting like I am allergic to salt and reading every label, and cooking most everything fresh. So this has helped a lot. 

But initially, my symptoms were so bad that I was uncomfortably bloated and had horrible indigestion. Eating only the smallest of portions was possible. I am feeling much better now, but am still avoiding the salt, and eating very few carbs. I am finding I eat smaller meals and snack more. I've even set my iPhone timer for every 3 hours pretty frequently, to remind me it is time for a meal or snack. Of course, avoiding all wine, and stopping coffee with all the milk I would consume in 1-2 cups each morning, has obviously helped as well. I am hopeful that the weight loss will continue as the less my heart is carrying around, the better for me.

I've always been a pretty healthy eater. My kids and husband will recall the meals I would fix when they were growing up; no chocolate cake for birthdays, only carob; belonging to a Westbrae co-op of foods; raising dairy goats, along with a large vegetable garden and laying hens; avoiding white flour and sugar as much as possible; making some of the oddest nut and grain loafs for dinner that weren't very popular; and on and on. Actually, my mother was way ahead of her time in this area. She had a friend from Marin (where we moved from) who was into vitamins, and so was mom. Mom frequently made her own bread, and we had a dairy cow with fresh milk and butter daily. Mom would serve us fresh tangy yogurt with wheat germ sprinkled over, and local honey drizzled on top. I still crave that today. 

I've always enjoyed canning, making jam, and the such; but have gotten away from it over the years with the hectic lifestyle we all seem to live. Well, I now have my second batch of homemade yogurt in the fridge and it tastes mighty nice. Then there is the Keifer I just started making a few days ago from the grains gifted to me from a dear friend. I'm working on perfecting its flavor as I like it a bit tangier than the 24 hour method, and may even be blending some fruit into it to make it a bit more pleasing to the pallet. This same friend also gifted me a SCOBY so I can start making Kombucha too. I sat in on a Kombucha Kamp presentation last week at the the Heirloom Expo so am all jazzed to get this going too. The SCOBY is resting in its hotel until my beverage dispenser jar arrives any day now.

All of this, along with the Renew Life Ultimate Flora 80 billion culture probiotics I'm taking, and I think we have the "good bacteria" department covered in this household.

So even though I am now scheduled to consult with a new cardiologist in November for cardiac catheterization and ICD implant (Implantable Cardioverer Defibrillator), I am keeping it all positive and reminding myself that getting rid of this external defibrillator vest will be liberating; and that miraculous healing, as much as I would love it, is probably not in the cards for me.

Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!



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Tuesday, September 10, 2013

Genetic Counseling Appointment

Monday was the appointment with the Genetic Counselor at Stanford Medical Center. Alura and I met along Highway 80 and she drove from there. This time the appointment was at 1:00 pm so we had plenty of time to get there and do lunch ahead of time. We had a great lunch at a little restaurant called Joanie's on California Street in downtown Menlo Park. Then we even had time to shop at Sur la Table on our way back to the medical center.

It was a wonderful appointment. Rachel Koff was very thorough and spent about 90 minutes with us. She had the medical family tree I had provided, and then spent a good amount of time completing it out even further asking about all my nieces and nephews and cousins too. She will be summarizing everything for me so I'll have documentation to share with my family, and especially to detail the additional information that she would like to get on a few relatives who I do not regularly see.

Alura was such a huge help to me. Not only was it great to have some one-on-one time together, stop for lunch and even shop a bit; but she asked some great questions and offered answers when I stumbled to find them. Yes, it is great having a Nurse Practioner in the family!

I knew when I made this appointment that I wanted to move forward with the blood draw and genetic testing that same day. For me it was a no brainer. I think most of my siblings agree and will move forward once a gene mutation is found, if one is, that is the cause or precursor to the dilated Cardiomyopathy that me and three of my siblings have or had. The "had" being Richard, who was the first diagnosed at approximately 33, who then went on to immediately need a heart transplant to save his life, and then died at age 40. Rich's transplant, and procedures leading up to it, generated international news; bringing many newspaper articles around the globe and TV reporters to our family shortly after his transplant. Just Google "Richard Dallara Heart Transplant" and you will locate several articles like this one:  Human Heart Replaces Pumps In Patient.

Of course my children, and the children of my siblings who have been diagnosed all are wondering if they are carrying the potential gene; as well as my siblings who have yet to escape the diagnosis. 

Now to wait the 3-4 months to get the results of the genetic testing. I asked, "Why so long?". The reply was that the work to locate the gene is done in batches. Any blood collected for this test is put through each batch as a group. The good news is that when I return for my followup mid-December, the results should be in. At this moment in time, December is not feeling so very far away anymore, sadly. Sadly because that means both Summer and Fall are gone.

I am anxious to get Ms. Koff's summary of our counseling appointment, and to move forward with this process. Knowledge is power and this is knowledge me and my family desperately need at this moment in time.

Debbie... aka the cancer warrior, SURVIVOR, AND now the Cardiomyopathy warrior!!!



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Friday, September 6, 2013

Very Depressing

What a depressing exercise -- reviewing all my claims via the Anthem Blue Cross online system, and reconciling to bills and such so I can follow up with doctors and labs and stay on top of all this.

In doing so, it looks like I have chocked up an out of pocket bill to severely depress anyone. I need to make some calls, but it appears that even though these are all approved providers, much of the bill is my responsibility for some of my bills, and does not even go towards my extraordinarily high deductible. And that doesn't even take into account a very high premium for just me alone.

This is all enough to give someone heart failure, when I'm supposed to be trying to get better.


Debbie... aka the cancer warrior, SURVIVOR, AND now the Cardiomyopathy warrior!!!



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