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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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.



LIVESTRONG

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



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2 comments:

  1. Glad to hear that all and all the visit went very well Auntie Deb! Sending TONS of love and support your way :) Team Sherrick!

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    Replies
    1. Thanks Shar and E. Just one more step in the right direction.

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