LIVESTRONG:

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.

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.

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Friday, August 23, 2013

Wonderful Company; Although No Improvement

I've really been enjoying the visit from my sister and her daughter, Donna and Jonnie. They, especially Jonnie, have been a huge help around the farm, doing all the chores and even scooping alpaca poop. Donna has been doing most of the cooking and driving so that we could get out and about and enjoy a bit of fun, like taking my grandson Gaige to Sonoma Train Town so Sarah could have a girls afternoon with her cousin Jonnie. Just such a pleasure and joy to have them visit for a full 10 days. I am so very thankful to them, and Bruce for giving Donna this time away.

It will be sad to see them both go tomorrow.

Today, Donna and Nancy drove me in for my check up with my cardiologist. It was routine, all is the same, which I guess should be good. I mean I am feeling better so I want to hear from him that my heart is improving; but not yet. I guess I need to be patient, and still hopeful.

So one more month and I will see him again for a checkup.

Meantime, I am preparing for the appointment with the genetic counselor at Stanford in a couple of weeks, gathering medical records from the siblings with the dilated cardiomyopathy diagnosis. Then we shall go from there.

So it is one foot in front of the other, one day at a time, smiling face, positive attitude; and thankful for each new day I am given.

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



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Wednesday, August 14, 2013

Insurance Approves Defibrillator Vest!!! And More Good News

Today I got great news. But let me first back up a little.

You may recall that last Friday a letter arrived from Anthem Blue Cross explaining that the defibrillator vest would not be approved by insurance. So I immediately called Zoll, the vest manufacturer, to inquire. And then I followed up again on Monday. Zoll had already been in touch with Anthem a couple of times and said it was under review so I should give it a few more days. They explained that Anthem was requesting a peer to peer consult between my cardiologist and a doctor from Anthem to discuss the matter. I called my cardiologist to inform them of this and encourage him to contact Anthem to expedite the process.

Yesterday, an email arrived from my cardiologist to explain that he had this peer to peer with Anthem and the vest was not approved. He was pretty frustrated with the insurance company. But he has already started the appeal process, thank goodness.

Then today, to my surprise, Anthem Blue Cross called to say that the vest is now approved.

Thank goodness! Because with all that I put out each month for my premium alone (nearly $1,000/month), and not to mention my annual deductible, the $3,000/month rental of this vest was not something we could afford. But then how do you go without once you've been told you need it during the time when the medications are being adjusted continually to see how I tolerate them and how my heart responds.

What a huge relief!

More news for this week is that I was able to get my appointment with the genetic counselor moved up by two months due to a cancellation.  So I will see Dr. Koff in early September. That is so wonderful, especially since the genetic testing apparently takes 4-6 months to complete and get results back.

So all this, coupled with me feeling a bit better, as long as I don't overdue, puts a smile on my face.

Oh, and did I mention my sister and her daughter, Donna and Jonnie, will arrive tomorrow from Montana to visit and help me out around the farm. I can't wait to see them and spend time with them.

Thanks to everyone for all the love and support. Mark and I are most appreciative. You really do make a difference!

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



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Friday, August 9, 2013

Zoll Life Vest, Insurance & The Fair

Yesterday I called Zoll to find out why my defibrillator LifeVest wanted to treat me yesterday while Alura and I were walking around Stanford Medical Center for appointments. I transmit it's data once a week via a modem and had just transmitted the weeks information the night before. So they should have the detail needed to let me know. The technician said that my heart was acting perfectly fine and normal, but the vest was causing friction which sent a signal as though the heart was in distress. This can happen if the leads wiggle around alot, which they normally do not. But perhaps when I hurriedly put the vest back on after the echo at Stanford, I didn't get it on just right. I can also put a dab of lotion under each heart disk, which should help. Thank goodness I was paying attention and responded to the first alert to turn it off. Of course, the next alert sounds much like a smoke detector, so I'm sure it would have gotten both my and Alura's attention to do something, not to mention everyone nearby.

I also asked Zoll about the letter I received from Anthem Blue Cross stating that the vest could not be authorized, that my condition should be treated by medication. Duh, I'm on a bunch of that right now, but that doesn't mean that something else might not go wrong. So this is a great safety net, in my mind. I also learned that it runs $3,000/month to rent the vest. So if they aren't gonna approve it, I better know real soon so I can decide what to do. For now, they say that it should all be resolved in the "next few days". Let's hope so.

And I really am starting to feel  touch better. I walked around the Sonoma County Fair with Sarah and Gaige today for about 2.5 hours. We checked out all the animals, the butterfly exhibit, the crafts exhibit, and tried to eat the healthiest, low-sodium food we could find at the fair -- a chicken Gyro.
 
Gaige enjoying a catsup coated french fry at the Fair.

And my heart never once stopped me or slowed me down. Of course Gaige and Sarah travelled at a nice slow pace for me too. But this is a very good sign. Tomorrow I up the Coureg amount yet again, so will probably be a bit woozy for a day or two from that. But if I tolerate it well, then hopefully the ole ticker will improve even more. So I must keep active to get these poor legs reconditioned after sitting around for the last six weeks. I'm finally able to do light farm chores again, such as feeding the animals morning and night; so that feels very good too.

Thanks to everyone for all the love and support. Mark and I are most appreciative. You really do make a difference!

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



LIVESTRONG

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Thursday, August 8, 2013

Familial Dilated Cardiomyopathy

A great video (only 2 minutes long) on Familial Dilated Cardiomyopathy, which is most likely the type of Dilated Cardiomyopathy that me and three of my siblings have been diagnosed with from ages 33, 45, 48, and 59.

Watch the Stanford Medical Center video here on Familial Dilated Cardiomyopathy

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



LIVESTRONG

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Wednesday, August 7, 2013

A Long Day At Stanford Medical Center

Today was the day I had been waiting for...
  • The day to consult with Dr. Michael Fowler of Stanford Cardiac Center
  • The day for a new echocardiogram with hopefully a better Ejection Fraction (EF)
  • The day to find more out about the possibility that the cause of this illness plaguing me and 3 of my siblings could be genetic, and what that whole process would mean
  • And a day to spend with my daughter, Alura, whom I don't often get these opportunities with -- mind you, a day of shopping or going to the spa would have been preferred. :-)
So we met up in Vallejo at 7:00 am where I left my car and she drove from there.  It was an early start for me, who has been sleeping in quite a bit since I've been so tired from the weak heart, but not for Alura who is normally on her way to UC Davis Med Center by then, where she works. At about 8:30 we crossed the Dunbarton Bridge and traveled the last 20 minutes or so slowly through the congestion of Palo Alto and areas surrounding the hospital, just in time for the 9:00 am Echo.

At 9:45 am we were waiting in Dr. Fowler's waiting room. But not until after my defibrillator vest tried to "treat" me as we were walking between the two offices; which I quickly reset, but became a bit agitated by the whole experience. Maybe I hadn't replaced the battery correctly when I replaced the vest after the echo, although those types of warnings are not like the one we heard as we approached Dr. Fowler's office; "Treatment stopped by patient. Do not touch patient." And this is the vest that, when I got home this evening, in the mail, is a notice from Anthem Blue Cross that insurance will not approve the vest. Yes, the vest I was told was being approved through insurance by the sales rep before I would hear back as to when I would be fitted. I guess this is a subject for another post another time. GRRRRRR!!!!

In Dr. Fowler's office, Alura and I were met by the nurse who took my vitals and placed us in our clinic room. Then two nurses came in, one in training, one doing the training. They reviewed my history and medication forms, went over a folder of information, and explained that Dr. Fowler, or an intern, would be in soon. Well, Alura and I visited, rested our heads for a little cat nap, and then the two nurses returned. They apologized for the delay, said Dr. Fowler had one more patient to see before me, and then would be in. They got us some water in the meantime.

Dr. Fowler is British and quite comical. He was very thorough and complete, reviewing my case, touching ever so briefly on the genetic aspect of the illness. He said that I was on all the correct meds and that was being handled very well by Dr. Dhar. He explained that one of two things would probably happen -- I would respond favorably to all the medication, but this might take months to happen; or I would not respond. And due to having had breast cancer recently, I would not be a candidate for a heart transplant for at least five years. This was something very new indeed. He also said that just the fact that I was experiencing some improvement in such a short time, and was tolerating the increase in medications well with little dizziness or other adverse side effects, was a good sign that I would continue to improve.

If I do not respond well to the meds, and need immediate attention since not a candidate for a transplant at this time, I am now in the Stanford system and would be treated there immediately, and would have surgery for an LVAD (Left Ventricular Assist Device). This device is often used as a bridge to a transplant, but Dr. Fowler says that often people find it so easy to tolerate that they decide to live out their life not going through with a transplant. And, should I get an LVAD, then I am automatically moved up on the heart transplant priority list. (Mind you I am in no hurry for one or both of these procedures, so will be having some serious conversations with God and my heart to be good and improve).

For now though, I need to pretend that I am allergic to salt - no prepackaged foods or sauces, being very careful with choices if/when eating out, and keeping up the salt free regime at home that we have been practicing for some time. Although now I am going through the cupboards and throwing out anything in a box, can, or bottle, with even a hint of sodium; anything pickled, you name it! And believe me, that means almost everything we have. Look around your cupboards; salt is not only a flavoring, but a preservative. It is shocking how much is in prepared foods. I MEAN SHOCKING!  If you thought I was overboard with the no-GMO's, just don't get me started about salt.

So onto the echo; I am at 20% EF. Now this may not sound too good to most of you, but it is better than the 11-15% I was hearing a couple of weeks ago. And while I have a long way to go to get into the normal 55-70% range, I am seeing good improvement with two of my brothers and they are giving me lots of hope. I have to be hopeful. There is no other option. And I learned that the EF measurement is not a precise measurement. The technician does all these measurements of the heart and chambers during the ultrasound, which then determines the EF. Even a measurement slightly different from one technician to another could mean a different EF. So the 20% reading today may not necessarily mean that it has improved in these few short weeks, it could just be a more accurate measurement, which is what I chose to believe. And the EF is not the only thing that determines how sick one is with CM. Shortness of breath, edema, sleeping with or without extra pillows, etc., as well as other factors are considered.

And the normal EF I had back in February of 2011, just prior to chemo and radiation, could in fact tell us that both my possible genetic predisposition to cardiomyopathy, and my Adriamycin chemo treatment, could both have contributed to me getting sick at this point in my life. The Adriamycin could have just tipped the scales enough to bring this on now. Then again, usually it doesn't happen until years down the road if there is not a genetic cause.

So now onto the whole genetic aspect of this illness. It was pretty clear that Dr. Fowler was not the one to go into great detail on this. He did say that their cardiac geneticist was very booked up and it normally took 6+ months to get in to see her. I pressed the matter with him several more times as we talked and asked to get into the Que with her right now, rather than wait for a call and a referral. Which he did. I know that the rest of my siblings, and my daughters, are all very curious to learn more and to know whether they are, or are not, at high risk for cardiomyopathy. I will meet with her in November for a consult, and will follow up with Dr. Fowler in December for another echo and to see how I am doing at that point.

By 1pm, Alura and I headed out to find a "low salt" lunch, decompress from the last four hours of appointments, and hit the road for some more fun traffic up 880. We both arrived at our homes finally around 5:30pm. So it was a long, but very positive, day.

For now, I am in the Stanford system. Have contacts for questions and such, even via email. That, along with the excellent care I am receiving from my cardiologist, Dr. Dhar, give me the peace of mind that is so important right now while navigating through this complex, and sometimes confusing, set of circumstances.

I am tired from the travel and appointments of today. Good night, and God Bless!

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



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Genetic Testing at Stanford Medical Center

Alura and I are on our way to Stanford Medical Center to meet up with their cardiac team. They'll do another echocardiogram, and I sure hope my EF has improved. Then I'll meet with Dr. Fowler about the genetic testing aspect of this mysterious illness that is plaguing me and several of my siblings.

Hopefully I'll have some good news by tomorrow.

Stay tuned.....

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



LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •



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Friday, August 2, 2013

Time to go public ~ Sure Wish It Was Better News

(This long post has been crafted over several weeks, when each time I would think better of posting, then some new information would be available, and I'd still waiver going public. So now I have brought you entirely up to speed from about June 7th when symptoms first started to today.)

 

Do you ever feel like just throwing in the towel?


Or is it the old saying, "What doesn't kill you makes you stronger"?

Oh my.... sometimes it just never seems to end. But I am convinced I will be even stronger; even if not at the moment. But some day, some time, in the near future. I mean, I can't have any other attitude about this newest blimp on the radar screen.

Now that I am through all my tests, and have met with my cardiologist several times to discuss them, this is the latest in reference to the comment of "that is a story for another day" in the post of July 12th.

So, it looks as if I may have some heart issues going on. Whether it goes back to some family history, or the Adriamycin taken during chemo (adriamycin or doxorubycin) and the risk of heart damage this drug has, I'm not sure that I will ever know.

I have cardiomyopathy, which is a weakness of the heart. It's pretty severe right now, but hopefully very treatable. Symptoms came on suddenly during the end of our wonderful anniversary trip about a month ago, which were shortness of breath and what felt like a fast heart rate. I immediately got into my Primary Care Physician, who sent me to the ER for an evaluation and suspicion of a couple of things that might be going on. Last thing on my mind was my heart. Especially since I've had so many colds this year, including bronchitis, and this felt more like a breathing issue, which had us both thinking lungs.

From there it was a matter of choosing a cardiologist and setting up tests and labs. So, we are now about a six weeks into this and I have had just about every test imaginable for the heart.

For those that don't know, I have brothers who have had cardiomyopathy; serious enough that one required a heart transplant at age 33 (he later passed at age 40), another who has improved but almost needed a transplant in 2011 at 48, and a third who at age 45 had a low Ejection Fraction (EF: the hearts ability and efficiency at pumping blood), but was able to bring it to within normal ranges with medication . Their cause of their conditions was always a mystery, or thought to be attributable to lifestyle, or perhaps a virus, for lack of another concrete reason. My cardiologist immediately questioned if any genetic testing had been done, when he learned of the family history, which it has not. Well he is all over it, and has consulted with Stanford on the subject, and I have an appointment there next week. As you can imagine, the rest of the siblings (there are 8 of us), not to mention children, etc., are all anxious to learn more. Knowledge is power and knowing would help them to be proactive so as not to get to a point that I am presently at.

The good news is that I am doing ok, considering all this; but have been very fatigued at the slightest bit of activity. I am on three heart medications, which will be monitored and adjusted as needed (and most likely more meds will be added in later), as I progress. My cardiologist is very optimistic that we can make great strides with medication, but tells us that it is a slow process that will likely take 3 months to get dialed in just right. He says that this did not happen overnight, has been coming on for probably a year or two. And that my heart has been working overtime trying to compensate for its weakness; hence the very rapid heart rate, even while at rest. It wasn't until these symptoms came on that we knew something was amiss. And the odd part of the whole story is that I had an echocardiogram in February 2011, in anticipation of the chemotherapy I was about to have, which can be hard on the heart, and my EF was in the normal range.

As a safety precaution, on Tuesday June 16th I was fitted with a Zoll LifeVest, which is an external defibrillator vest. The doc feels it is an important safety net right now. The vest is hardly noticeable as it is worn under clothes and covers my upper back and around my ribs. Unfortunately I cannot hide the power pack that goes with it very well, but what the heck, it is now my new best friend. :-) Probably the most inconvenient part is I cannot swim, and must have someone with me when I bathe, as that is the only time I can take it off. But it is all for a good reason, and I don't question the need at this time. I just follow the doctors orders.

Unlike cancer, this cannot be "cut out", or treated, with the hopes of it not returning. So it feels so much more frightening to hubby and I right now.

And although the last two weeks on the newest increase of heart medications I have been feeling better, a bit more energy, finally able to sleep in my bed for more than a 3-4 hour block, got rid of some miserable indigestion and bloated feeling with the best probiotic tab from Pharmaca (Thank you Cathie for taking me there to consult with Paul - what a great resource); but today the cardiologist says he does not think the heart has improved any, but that the symptoms have made me feel better. That was disappointing to hear. So medications are increased yet again, and hopefully there will not be a 5 day set back as last time.

I'm just glad I'm feeling up to making the walk out to see the alpacas in the last few days and will attempt a lap around the track tomorrow morning at the Sonoma Relay for Life Survivors lap.

So that is it for now. We are all taking it one day at  time, and trying to stay as positive as possible. Of course we welcome all positive thoughts/vibes/prayers coming our way. It is our close family and friends that help us to get through these challenges put before us.

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



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Voted one of top Breast Cancer Blogs 2nd year in a row!

Voted one of Top Breast Cancer Blogs 2nd year in a row!

Healthline says, "With her treatment a year in the past, Debbie Emery is a true warrior and survivor in her fight against cancer. Gain strength from Emery’s blog, My Journey Past Breast Cancer.
Happy to blog about more than just her medical condition, family-focused Emery writes posts that alternate between being hopeful and anxious, humorous and frightening—just like life itself."

I'm feeling very honored.

THANK YOU, HEALTHLINE!

Debbie... aka the cancer warrior ... AND SURVIVOR!!!



LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •



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