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, March 9, 2016

I Have Some Hope

I have some hope. And that is all I can ask for now.

We went to breakfast with Alura after the God forbid early appointment at Round Barn Drive of 8:00 am this morning. Of course we hashed over the appointment with Dr. Anderson (details to follow). Then home to talk some more and copy her notes. She is already home in Davis and I just woke from a nap I started when she left 1.5 hrs ago. So... a nap on the way in to Santa Rosa, and one on the way back, and now this too. I must have needed it. I think the stress of this all got to me, now there is some relief with a plan in place. It is not a walk in the park, by any means, but I'll take it.  So while it is somewhat fresh in my mind, I will write it all up. Although Dr. Ian Anderson spent a good 2+ hours with us and information was flying around with options and such. So I hope I do it all justice

Let me start by saying that the weekend was rough after the biopsies on Friday. My breast was very tender, and the liver was still giving me some low back and stomach aches, almost early sign of a menstrual cycle. You ladies get that analogy. But the pain was managed with Tylenol and is very fleeting now, although the breast has a spot with an open wound and continues to bleed. This is not from the biopsy, but is an area on the fat necrosis where a blister formed, and so now it just doesn't want to heal, which is further hampered by the cancer. I also continue to have mild indigestion, most likely from the struggle the liver is experiencing.

Dr. Amy Shaw called Monday to confirm the cancer was in both the breast and the liver. It was such a shock to learn about the breast with all the testing we have done since last April. Repeated mammograms and ultrasounds, a biopsy, and then everything that has happened in the last month. But again, I can't be crying over spilled milk, just gotta move forward. And in all reality, with the knowledge of the liver having 10 lesions, one fairly large, it seemed very plausible. And since I wasn't waking from this nightmare, I went with it.

On Tuesday, the Tumor Board met at St Joseph's Health Care Breast Center, a Nationally Accredited Center. Apparently over 30 specialists meet once a week to discuss 2-3 patients and brainstorm. I was fortunate enough to be included in that group yesterday. I had an appointment with my Cardiologist that same afternoon at 2:30 pm, and Dr. Amy Shaw called with a review of the Tumor Board's findings just as I arrived at Dr. Dhar's office. We were able to talk briefly before I was called in for the cardiology appointment.

A brief synopsis from the call with Dr. Shaw is that the breast cancer is mildly estrogen receptive (ER). The liver cancer is highly estrogen receptive (ER). My breast has large pockets of the fat necrosis and small areas of cancer. Dr. Shaw says they have a four year plan for me.

Both Dr. Dhar and the St Jude tech assure me an MRI of the brain is safe as long as it is done at the 1.5 Tesla level, whatever that means. Don't think I'm getting a new car out of the deal -- DAMN! It is an MRI of the chest and body area that is not safe with my ICD (Implanted Cardioverter Defibrillator).

I asked Dr. Shaw how this could've been missed in April with the biopsy, and she said the cancer in the breast is in small pockets and there is a lot of fat necrosis, so they may not have gotten the right sample. Dr. Shaw did say the liver labs were all normal from the blood work done in Memorial ER on 2/26/16, and the following week in the labs before the biopsy. This tells us that my liver was compensating for the cancer.

And Alura tells me that if I'm dealing with cancer, her sources tell her the ER cancer is treatable by many different methods so I will have more options available to me. So... one bright light in this foggy cloud.

 

Now you have the back story!

... On to the plan for the future... 

 


FIRST, let me say, THEY ARE ON THIS!

This morning, bright and early at 8:00 am, Mark, Alura & I met with Dr. Ian Anderson at Annadel Medical Group offices on Round Bank Circle in Santa Rosa. Annadel is part of St Joseph's Health Care in Santa Rosa (Memorial Hospital), and Annadel includes the offices where Drs. Elboim and Shaw practice, along with host of other physicians, specialists, and services. This is where I go 90% of the time for my tests, scans, appointments, etc.

Arriving at the office, especially for Mark, brought on a lot of anxiety and anger. Mark was not a happy camper and it took quite a while before he could sensibly discuss things with Dr. Anderson, but he did finally come around.

Dr. Anderson spent a good 2 hours, and more with us. There was so much information, medications, and medical procedures being discussed, that it was hard to keep up. But Alura and I had a list to cover, and Alura and Mark took notes. So this is what we all learned.

Between the PET Scan and  biopsies we know...
  • This is Stage IV breast cancer metastasized to the liver.
  • There are 12 tumors in my liver (rather than 10), the largest 4.1 cm. Surgery is not an option, and other treatments that target a specific area are out as well. 
  • There is a slightly inflamed lymph node near the liver. 
  • The liver cancer is highly Estrogen Receptive (ER), which means the cancer is feeding off of Estrogen. 
  • The cancer in my left breast (surprise, SURPRISE), is mildly ER. And there is an inflamed node under my right arm, but we cannot feel it there, so perhaps that is a good sign. 
  • The better information is that there is no cancer in my bones and lungs, two other common places that breast cancer shows up in. And the fact nothing shows on the PET scan in the colon area is also good.
And the plan goes something like this...
  • A baseline Echo this Friday so we keep tabs on my heart.
  • I will be getting calls right away to set up all of the following:
  • At Dr. Anderson's recommendation, a consult at UCSF to review all the previous findings and see if there is anything else out there available other than what Dr. Anderson has in mind. Or the Doctors at UCSF may agree that this is a great plan and say -- GO WITH IT. Either way, we expect that everything can be carried out at Dr. Anderson's offices, for the most part. This is great as we had planned to ask about a 2nd opinion.
  • A brain MRI at UCSF to rule out cancer metastasized to the brain, although all previous tests show that is unlikely -- Whew!
  • Labs to check for cancer tumor markers, just as precaution. These will continue as my treatment progresses.
  • An appointment to get another Port -- Woohoo -- I miss my old one. So I will have dual gadgets in my chest; an ICD, AND a port.
  • There is something called FoundationOne that Dr. Anderson is looking into as well. FoundationOne is "a fully informative genomic profile that helps physicians make treatment decisions for patients with cancer by identifying the molecular growth drivers of their cancers and helping oncologists match them with relevant targeted therapeutic options. Check out the very cool videos at the link." This is very exciting, in my mind.
  • Chemo, unless UCSF changes this plan. Normally Dr. Anderson would start with hormone therapy due to the ER. But since I have been on Letrozole, an Estrogen suppressing drug, for nearly five years to prevent the recurrence of the cancer of 2011, chemo is a better first approach.
  • Hormone Therapy following chemo, once the liver responds to the chemo and we knock the cancer back to where it is less life threatening.
  • Possibly Immune Therapy, but that would be later on when they have something more tried and true for breast cancer.
The side notes to the bullets above, go something like this...
  • Chemo will be two drugs together (Either Gemcitabin, Carboplatin, or Taxol); one infusion each week for two weeks in a row and the third week there is no infusion. After two cycles (6 weeks) I'll have a Pet Scan and labs for tumor markers. Chemo will cause hair loss. So I imagine it will be like last time with nail loss too -- such fun. It is safe for my heart. YIPPEE!
  • They are jumping on the chemo with guns loaded and both barrels drawn (Is that how you say it). It is urgent we take action now and I should be getting some treatment within 7-10 days.
  • Hormone Therapy will include one or the other, or both, (way too much info to absorb it all today) of the drugs Faslodex (a shot to either cheek; and I'm not talking face, once or twice a month for a couple of months, I think), and/or Ibrance (a pill).
  • If chemo is tolerated well, it could last up to 3-4 months. If chemo works miracles, we may switch to Hormone Therapy sooner. If I don't tolerate Chemo, or it isn't doing it's job, we'll switch to another drug.
  • These treatments will tax my immune system so we will be watching all this closely.
  • Mastectomy not warranted at this time. Perhaps the chemo will help the fat necrosis and allow my skin to heal. Right now there is some drainage and bleeding that may continue until I get some treatment. A mastectomy would postpone the chemo, and we don't want that. And it may not be very successful since the mass is so large and my skin is not healing well due to lack of healthy blood supply, or some such thing. So post chemo, or hormone therapy, once the liver is "under control" and if mastectomy still warranted and the time is right... you get the drill.
  • Did I already say that PET Scans and labs for cancer markers will be happening all along the way. They are standard, now that I am Stage IV. They are not advised for regular old, run of the mill, breast cancer. Not trying to make light of breast cancer here. Instead, I am screaming that why are they not standard???? 
  • Clinical Trials -- most likely my heart failure will disqualify me for any clinical trials. But Dr. Anderson can still prescribe the same treatments under his care. So he will talk to the experts at UCSF on this topic. 
  • Would Mastectomy back in 2011 have changed the current state of events -- NO. 
  • They will also consider antibiotics during chemo since my breast is constantly on the verge of infection and chemo will encourage such with a depressed immune system.
Time - you may think it is not the time or place to discuss, but I did ask as I needed to know. These are all educated guesses, but there is no way to really know. That said, without any treatment it could be a month, or a year -- it just depends on how quickly the liver fails. With the treatment plans above, hopefully a good year or two at least, but quite possibly much longer. I can only hope. I have no choice but to put my life in the hands of the medical community. The options are not something I'm ready for now. I still need to see those grand children grow a bit more.

It was a long, exhausting day. And same for the few days leading up to this. But I'm feeling confident about my Doctors and the approach set forth so far. Let's hope the optimism continues!

So there you have it.

Now on to the fun part of the day following this appointment --


Brunch with Mark & Alura at a new place, Lida's Cafe. We'll be back.
A friend I found outside Lida's.


Please continue to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

12 comments:

  1. Sending all my warmest love and care to a powerful mother and teacher. I'll be holding you in my heart each day and visualizing you enjoying a long and happy life.
    - belle

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  2. Thank you sweet Belle. We are taking it one day at a time, and welcome your thoughts and kindness.

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  3. Debbie, I don't know what to say. This just really bleeping sucks. We love you, sending love and hugs and good thoughts your way.

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    1. I know; it is shocking and just sucks big time. There isn't more I can say or do, other than get my treatment, and take it one day at a time. Love you guys too. I need to meet that Syd someday soon.

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  4. Auntie Deb, I finally took the time to read your blog on line (can’t view it from my phone for some stupid reason) and let me say first off that you are a great writer. Secondly, your level of humor throughout is refreshing and heartwarming. Thirdly I am optimistic that you are getting the best possible care out there, and am so glad you have your family to support you. I wish I lived closer and could visit easily and help out. I love you so much. The end made me cry. You can't leave us, ever. You just can't.

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    1. Hopefully have many more years ahead of me; but we have to be realistic. Sucky as it is. I love you so, sweetie. Hope to see you sometime soon. So proud of you and all you have become. XOXOXOXOX

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  5. Wow........just full of healing thoughts for you and praying for miracles. One day at a time, Debbie, and keep those kids....big and little......close by.

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    1. YES, looking forward to the grandkids helped get me through treatment 5 years ago. Lets hope I get to see them grow up for several more years.

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  6. I'm thinking about you. I appreciate your honesty and bravery.

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    1. Thanks so much, Marta. I question sometimes if it is the right thing to do to be so open on all of this. But once I started the BLOG, and with the kind responses I've received, it just seems like the right thing to do. And it helps me to vent, in a way, and share with my friends and loved ones. I remember our week at GGFI so fondly. AnneLena and I communicate regularly on FB and I hear from Donna once in a great while. I wonder what Terry is up to these days. Wouldn't it be fun if Morgaine and Judith hosted another one.

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  7. One simple day at a time Debbie…finding the joy in each of the moments; your kids and grand-kids, Mark, or getting your hands on some squishy, soft fiber...whatever it takes!! Much love and prayers to you from me. Sharon

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    Replies
    1. Thank you Sharon! Grand kids, kids, friends, fiber; all so uplifting and fun.

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Debbie