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.


Friday, December 27, 2013

A Wonderful Christmas with Family

It really was... finally I am feeling better and we had a wonderful Christmas with family. 

It's been hard to say that and really mean it. Because even though I've been feeling better, to say it just didn't seem right. "Better" is one thing, but still not feeling "good", is the true way to describe it. And it's been going on for two months now. To the point that I was almost afraid to say I was feeling better. It sounded as though I felt "good" and people would get all excited and tell me how happy they were for me. You see, it still wasn't good, and I just wondered when, or if it might ever be. It was getting very old and tiresome and wearing me down, ever so slowly. Mark could see it and worried so. But we kept plugging along. You know the phrase "snails pace". Well I think we finally can put that in perspective. AND it most definitely is not fun!!!

I think it was finally on December 23rd and 24th... "better" to the point I could almost eat more than a couple of bites at meal time, walk around the yard for nearly a mile and not feel like I would pass out (if I went slow enough). So, you see, it is all relative. 

So on Monday I made the trip into Santa Rosa for some fasting blood work and annual mammogram. The plan was to do it very early (the bloodwork piece), grab a bite to eat along the way, then run a couple last minute holiday errands before the mammogram, if I was still feeling up to it. That was not to be because at 9am I felt a nap coming on. And what is usually a doze of 15 minutes or so for me to feel refreshed, ended up being two whole hours. So by now I am starving and just have the time to get the labs done and the mammogram. So those were behind me and the anxiety of another mammogram set aside until the results come back any day now. These tests always cause anxiety, even though I am two full years past my treatment year of 2011. But I made it to Costco to pick up a few last minute things, and then home to collapse around 4pm. But the day wasn't over because we both had to enroll in new health plans by midnight, which we did -- just in the nick of time. Thank Goodness!

So, on with the good part of the story ~
     The Saturday before Christmas we hosted my siblings and a couple of cousins for our family gathering. It is always a nice day of just hanging out, sharing appetizers and nibbles, kids running in and out on a beautiful sun filled December Winter's Solstice day (unseasonably warm around here); with older cousins playing with the grandsons -- just a joy to see all around. I was feeling just "ok", and able to enjoy the day and nibble on a few of the tasty treats everyone contributed. (Food is not my focus these days, which is a good thing. How else could I be down 30 pounds. This part I am thankful for, most definitely). We exchange gifts with the kids at the end of the day, maybe some homemade jams or cookies between families. But really it is about the kids. And this year Kiana received a fun 1,000 piece puzzle that the older kids and adults dug into and solved within a few hours - Candy Wrappers. It became a challenge to let someone allow you to squeeze into a space at the table for a moment to play.  :-)

I even had a moment to read a story to the boys; a rare event these days with their levels of energy bursting at the seams.

The lights of my life, Gaige and Nico

Tuesday morning we started food prep for our traditional Christmas Eve dinner with the girls and their families. I made persimmon pudding, and had made some Christmas cookies before Saturday's family gathering. My other responsibility was a new salad of brussel sprouts, kale, almonds, and crumbled gorgonzola, among other things. I think I need to invest in a mandalin for the slivering of the brussel sprouts if I am to do this one again. We did decide later that some citrus would have complimented everything; and I tried it with the left overs the following night and it really completed the dish -- next time! 

Alura and Stephan arrived early afternoon and my concentration shifted to fun time with adorable Nico. I don't get much time with him now that I'm not babysitting weekly, so it was wonderful to have him to myself for a couple of hours. We even made the walk to the mailbox and gathered road gravel in the little push firetruck on the way back up the hill, which almost felt easy with a two year in tow who "runs" (if you can call his little steps a run) back and forth looking at everything, sliding into the dirt from time to time, and collecting gravel as he roamed. By then, Mark and Stephan were elbow deep into spinach/chard/mushroom raviolis, from scratch, and a lovely chicken dish. Add in some Northern white beans and a sweet potato dish, and yum.

My walk to the mailbox.

Christmas Eve with my loves:
Chris, Gaige and Sarah
Alura, Nico and Stephan

And the boys were so cute after dinner helping Sarah to bring her last wrapped gifts out from the office to put under the tree. After a late night, Sarah and family headed down the hill for a good nights sleep, and Alura and family tucked into bed in our guest room. Everyone slept well and until after 8am on Christmas morning. Which gave Sarah, Chris, and Gaige time to get back up to Grammie and Grandpas for all the fun and festivities of opening the umpteen gifts that had collected under the tree over the last 24 hours. It is amazing what a Christmas with children will do. The girls seemed to have a lot of fun getting things for their nephews.

The boys were so cute helping Sarah to bring out her wrapped gifts.

We spend Christmas morning with snacks, left over persimmon pudding, Christmas cookies, etc. Then a big brunch is pulled together late morning. Grandpa couldn't wait to drag out the farm waffle iron this year. The last time the boys didn't really appreciate the shapes or the food. And probably next year they will appreciate it all even more. But we had a lovely breakfast, and I was even up to enjoying a couple of glasses of bubbly for the first time in a very long time. And I felt great all afternoon too!

After a wonderful morning, brunch, and watching the boys play with everything, the girls loaded all the booty up late afternoon and headed to their respective homes. We picked up the house and most of the dishes and collapsed for a few hours. Today is the day after Christmas and Mark has broken down all the boxes for recycling, and set up our new all-in-one printer/scanner in the office, and figured out the sound issues with the stereo/TV/DVD system -- he is a much happier boy now. And Polar Express is now playing as proof of his efforts. I've figured out my new ipad air & got it set up, after an exhausting walk to the mailbox. It was much easier walking there with Nico in tow, probably because he is so much fun to watch and interact with. And tomorrow we will make the trip into Costco to pick up our holiday cards that I mistakenly ordered through their regular service, no the 24 hour photo service, as I had thought. So they will be New Year's cards and hopefully get out this weekend.

My rock, my inspiration, the one I lean on who holds me up. He makes a good Santa too!

This was a Christmas of much thanks, and lots of hope. We are both so looking forward to the New Year and all that 2014 may bring to us, and to everyone.

Wishing you a Happy & Healthy New Year!

Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!
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Sunday, December 15, 2013

Still at Baby Steps

While Mark was out doing chores this evening, it seemed it was time I give you the latest on me. I saw my cardiologist last week and he reminded me that I would be on a heart transplant list already if it weren't that the cancer prevents this from happening -- I must be 5 years cancer free to be a candidate for a heart transplant. Talk about a catch 22 -- the chemo may have tipped me over the edge to the predicament I am in with the heart failure, and it may delay me from getting what I really need. It’s interesting how I forget this part of the equation from time to time -- possibly needing a heart transplant. YIKES!!! I guess I just don’t want to face a heart transplant someday down the road. But I must keep it as a possible reality, as hard as it is to imagine.

Dr. Dhar also confirms that, due to my very weak heart, any kind of cold will most likely set me back as this last one did, so I need to be so careful about avoiding colds, as this has been the most miserable 6 weeks for me! I mean, the word "miserable" has been coming out of my mouth very regularly of late, so if this is any indication how I've been feeling...

The exciting part of the appointment was that it was pretty amazing to see what my St. Jude ICD tracks and how the doc could now see exactly what was happening over the last month to show how I've been struggling and confirm it was from my heart function, and impedence to the heart. Poor baby has been working real hard to do the simplest of things, like digest food. Impedence, like fluid in, around or near the heart – which then prevents my weak heart from dealing with it like a normal heart would. Ugh!!!

And on a positive note, I've been feeling a bit better the last few days, and the report also showed there has been little impedence just those last few days -- pretty incredible information this little friend of mine tracks. The good thing is there have been no pacing or shock treatments, or A-fib or V-fib, since the last ocurrence on 11/2/13. Although, it's been a pretty miserable 6 weeks (there's that word again) and its been really, really hard to stay positive and moving forward. I've had lots of moments, and Mark has been such a trooper for me, being strong, and ready to catch me at any moment. I put on my happy face, or as best I can, the rare instances when I get out in public, as this is what we do. It makes us feel better, and those around us too. But I wanted to be open about just how hard this has all been. Those baby steps are a bitch at times; especially when it feels like weeks since you've been able to take even a tiny one.

So we are slowly increasing the Carvedilol again back up to the max dose. You may recall I had to lower some of my meds after feeling bad in late September. Maybe, just maybe this will help some. I'm finally able to do more than just walk around the circle here by the front door with several stops to catch my breath. I've made a couple of trips all the way to the mail box. Coming back feels like Mt Kilimanjaro, and I stop a lot along the way to catch my breath; but considering I wouldn't even venture down to the gate for weeks, this is a positive step.

I am thankful for my wonderful medical team who I know is doing all they can for me and I trust implicitly. 

So once again, thanks for listening and understanding. It is just hard sometimes when I run into a friend, or talk with someone, and they hear that my ICD implant was successful, and then jump to the conclusion that I am all better now and will be good as new soon. I have to just smile back at that point, cause I don't want to burden them, and figure they really don't need to hear the real details of my situation, or might not understand. The reality is I may not, probably won't be, the same old Debbie ever again. But I can still get out and enjoy life, my family, and keep striving to be as healthy as my body will allow. And that is my promise to myself and family.

So you are all very important to me; and I am sharing all my woes with you, as I have done along the way. I've hit some pretty low points, but hope that they are behind me once again. Cause this girl is ready to spend the holidays with family and friends; and especially those two adorable Grandsons, Nico and Gaige.

Today is feeling like a "good" day, and hopefully tomorrow will be the same. We even had lunch out and did a bit of shopping last week after my appointment. I've been sleeping better and in my bed rather than a chair; at least most of the time. And Dr. Dhar says I am a model patient, losing the weight I should (he said keep it right where it is), following his instructions, watching what I eat, trying to walk when I’m up to it. And I have two beautiful strong daughters, with the most adorable grandsons that give me so much joy. They check in all the time and visit when they can. Sure hope I can get back to helping them in spending one-on-one time with the boys so they get a break once in awhile. 

So, thank you for allowing me to lean on you a bit now and then, and vent and clear out my soul. Hopefully I will be there for you to lean on me from time to time when you need it.

In closing today, I so admire all my siblings. We are an amazing bunch, but we each seem to be going through so many struggles these days. I am so looking forward to starting a New Year, all in baby steps. I'm ready to see 2013 behind me.

B R I N G  O N   2 0 1 4

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


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Monday, December 2, 2013

Step - By - Step; We're Getting There

It's been very slow going for over a month now, which has been hard on me emotionally. Sometimes you just wonder if this is it; is this as good as I'll be?

I struggled Thanksgiving Day, putting on a happy face as best I could at my brothers house. It was a lovely day full of family. Matt and Marie hosted us at their comfy home in Petaluma, along with their boys, Matisse 10 and Malone 5. Ken and Christine were there with Cam (18) and Kiana (13). Ed was there and is doing really well these days. And it was so good to see Nancy and Nat, after Nat's major colon cancer surgery just 5 weeks earlier. I hadn't seen them since surgery day and they are doing as best as can be expected considering all they have been through and everything ahead of them.

And of course the two most adorable grandsons in the world arrived, Gaige and Nico, with their parents. Now that will put a smile on your face for sure.

But at one point it was apparent I had shed some tears, and siblings and kids all wanted to help in some way. I had just talked to Donna on the phone and was having a moment of melancholy and feeling sorry for myself -- wanting to be feeling so much better and SOON! The last month was wearing on me and I was having a hard time hiding it.

It's just that my whole system is not working as it should, and the indigestion and belly aches come and go, but seem to come more than they go. I can only figure that it is all about blood flow, or lack thereof. It is apparent my heart is struggling still, after the bad cold a month ago. And digestion needs blood flow. So everything seems to be moving in slow motion and my entire system is all discombobulated. How's that for a medical term? :-) I'm back to low dose diuretics almost daily; which help a lot, but also cause havoc too.

Then there is lack of sleep, and on, and on. So I was very careful for Thanksgiving. I figured that if I did not eat one bite until dinner, then at least the miserable bloated feeling and indigestion would not come on till a couple hours later and we could head for home then. And that sort of worked. And actually I felt a bit better that evening than I had been, and the following day too. 

So I'm thinking I have made two steps forward this weekend, and that gives me hope. I took a very good 2-hour nap yesterday. And today I made my first walk in over a month to the mailbox. Mind you, the trip back is steep and I had to stop several times to catch my breath and give my heart a chance to recover. For one thing is sure, I did not want my ICD to need to shock me on this little 3/4 mile walk I was on. I MADE IT! I felt like I had climbed Mt. Kilimanjaro, or something; but I did it. And it is something I was not up to trying until today, as the short walks around the yard practically did me in over the last few weeks.

I haven't seen the improvement in my heart function that I had hoped for after the 90 days on all the heart meds that had been hinted on earlier when I started this medicine regime. But I am making progress. And that I will cling to for the moment. Any little thing will help right now.

And of course these two cutie pies make me forget all my woes.

G R A N D S O N S   &   C O U S I N S


Lots of fun on the trampoline.
Snack and diaper time.

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


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Wednesday, November 20, 2013

It Was Fun to Have Guests

Last night we had company for dinner. I think this was the first company we've had since the diagnosis of the cardiomyopathy/congestive heart failure in June. Sure we have people drop by to see  Brookfarm from time to time, or things like that; but not a real dinner party. 

The opening of Dungeness crab season hit a couple days ago, and our friends John and Pat, and their friend Beth, were visiting from Annapolis, Maryland. We thought, what better thing to do than to enjoy some crab for the first of the season. Two other local couples join us too, and it was a lot of fun.

I've still not been feeling very good of late; and up until the time people arrived, wasn't really sure how I would feel. Several days back when we planned this,  I told Mark to go for it, that it would all work out fine. I knew it would. But I really didn't think I would be able to eat much of the crab, and would most likely skip the wine too.  I put on a happy face, though, and enjoyed. And I think it was very wise to take some diuretics late that afternoon as it sure helped with all the bloating and indigestion. Sometimes, just having others around, with interesting discussions and laughter is a wonderful change of pace. And it certainly was this time.

And we even have some yummy left overs.

The problem I seem to be having right now is my digestion, or lack thereof. Which all stems from the heart failure. Ever since catching the cold and bronchitis right after having my ICD implanted, I've just not been the same and have been setback quite a bit. I know, I'm sounding like a broken record again. I do feel a tiny bit better from time to time, but ever so tiny, and oh so slowly. So the fluid build up in my entire system is caused from the heart's poor ability to pump efficiently. This causes swelling and pressure in the abdomen, and just about everywhere. We are keeping tabs on it, and there is nothing that needs attention so far, but it is just tiresome. Too much of that, and not able to walk very far at all and definitely not up stairs or the slightest incline, not sleeping very well -- but thankfully that is starting to improve.

Mark is so understanding and supportive. I've had a few meltdowns lately and he is right there to support me. We both know this will take some time.

Tomorrow, now that the cold symptoms are nearly gone, I'll be heading down for the flu and Pneumonia shots.

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


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Saturday, November 16, 2013

The Common Cold and Congestive Heart Failure/Cardiomyopathy

This past week I've seen both the Cardiac Electrophysiologist, who installed my ICD, and my regular cardiologist, who did the cardiac catheterization and will follow me from here out.

And the timing was optimum as this cold lasted a good 12 days. Thankfully, I am finally feeling human again. That's not to say I am back to my "not so vibrant" new me. It set me back dramatically. But at least I'm not feeling so stuffy, bloated, coughing a lot, and not sleeping well. Although I am still out of breath at the slightest activity, like walking anywhere.  :-(

So it has been quite a setback for me. I was walking a mile and going to the mailbox and back before. And feeling like I could start to do more. This recent cold did work into bronchitis again.  It has set me back to where I can walk around the yard a bit if I limit it to the flatest areas I can find, and pause often whenever the slightest incline. My cardiologist tells me that colds may be hard for me to handle going forward, so I need to be careful and dilligent when out in public. I had not gotten a flu shot since surgery was so close. But next week I am marching myself down to get flu and pneumonia shots pronto!

So that's the latest. One day at a time.... Two steps forward, one step back. Patience, for sure.

More about Congestive Heart Failure and Cardiomyopathy here. And click the link to read the entire test:
The American Heart Association estimates that 4.7 million Americans have congestive heart failure (CHF) and that 400,000 new cases will be diagnosed in the coming year. Heart failure is the leading cause for hospitalization in people over the age of 65, and the risk for developing the disease increases with age. The risk for developing heart failure is slightly greater in men than in women. African-Americans are twice as likely to acquire the disease as Caucasians, and mortality from the disease is also twice as great in this group. Since the 1970s, heart failure has been on the increase because the number of people aged 65 or older has grown. Approximately 20% of CHF patients will die within 1 year of diagnosis, and 50% will die within 5 years.

Congestive heart failure occurs when the heart is unable to pump blood throughout the body (but not all patients with heart failure have congestion). There are two categories of congestive heart failure: systolic and diastolic. In the systolic type of the disease, blood coming into the heart from the lungs may be regurgitated so that fluid accumulates in the lungs (pulmonary congestion). In the diastolic type, the heart muscle becomes stiff and cannot relax, leading to an accumulation of fluid in the feet, ankles, legs, and abdomen.

Congestive heart failure is in itself not a diagnosis. Rather it is the physiological result of damage to the heart caused by some underlying condition. Therefore, it is not enough to say that a person has congestive heart failure. The CHF has to be due to some underlying process, and that diagnosis is important in terms of treatment and prognosis.

Cardiomyopathy is a condition in which the heart muscle is damaged and no longer functions properly. It is divided into three categories: dilated, hypertrophic, and restricted. Dilated cardiomyopathy, where the heart muscle becomes thin and stretched, may be caused for unknown reasons (idiopathic), by alcoholism, and by endocrine or genetic diseases. Restrictive cardiomyopathy results when some disease process restricts the movement of the heart. This may be caused by amyloidosis, prior heart surgery, and diabetes, for example. Hypertrophic cardiomyopathy, where the heart muscle becomes enlarged and thickened, is due to high blood pressure and failure of the heart's valves.

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


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Monday, November 4, 2013

It Works!

The ICD (Defibrillator), that is!

The ICD implant is probably the best thing I could ask for right now. Never thought, or hoped I would be saying that but.....

I've worried about colds with this new heart condition. Especially how hard it was to stay well last winter -- Now looking back, I'm sure they are all ll intertwined, weak heart/hard to fight colds. But, I did not expect to get sick from the hospital. And maybe it was not the hospital. But I remember the cleaning person coming out of my hospital room bathroom one time and had a big wet sneeze. I thought then, uh oh, she better not be sick. Then....

I felt it coming on Thursday evening, a bit of throat stuff Friday, some sniffles on Saturday. But I thought I could nip it in the bud with fluids, and lots of home remedies. At least I was able to go to Train Town for my grandsons 2nd birthday. Wouldn't miss that for the world. 

Then, Yesterday was not a good day here. I slept like crap Saturday night, was up in the recliner several times, just didn't feel well in bed and was wide awake! I took some diuretics in the morning as I was starting to get a rattley cough and emailed my cardiologist with what was going on. He is really good about email and I knew I'd hear back quickly. And if not, I'd call in. My temp was only 99, but Blood pressure was up from "my new low norm" since all these meds, but still "ok" . Then around 10am my pulse got to 140 and above, I thought I felt some kind of treatment from the ICD; gentle, but something for sure. So I just rested and tried not to worry, and hung out in the recliner all day, drinking fluids, etc. 

My Dr. called soon after and checked in. I have this new modem device that goes with the ICD. It transmits information to my cardiologist on a regular schedule, and I can send data whenever I need to. And he asked that I do that and use the Merlin@home to transmit data to him and to watch my temp. With the ICD so new, we need to be very careful about infection. I was taking my temp again to double check when he called back and it was 100.4. He said that, yes, in fact I had been treated, and sent a copy of the report he received later in the day. He said to continue what I was doing, but be cautious with diuretics. He immediately got me on antibiotics 3X day. The pulse stayed high all day till about 8pm, and I felt horrible during that whole time. I could hardly even enjoy the wonderful chicken soup that Mark made for me. Then when the pulse dropped to 100, I finally started feeling better. 

The Hallmark Channel is great in these situations. I watched Thanksgiving and Holiday "love" type stories all afternoon. 

I got to bed early and slept very well last night!!! :-) So today is a much, much better day, all vitals in much more normal ranges.

That pulse in the 140 range for several hours was very scary. I wonder if just the cold/virus (whatever it is) was the cause of that spike. 

This is a copy of the Merlin "Alert" my cardiologist received. (see below). There was additional detail available through a URL, but it appears to be password protected for only his eyes. I really wonder what it says. He mentioned we may need to do more EP studies in future if this continues. I don't think they had identified any VTach on me previously.

Transmission Date: 11-03-2013
Alert(s): VT/VF Episode Occurred; Successful ATP Therapy Delivered (ATP - Anti-tachycardia Pacing)

This is a pretty amazing little tool to have - both the ICD and the Merlin modem.

So, YEAH for my St. Jude ICD!! dancehearts Keep up the good work, pal.

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


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Thursday, October 31, 2013

Moving For Life ~ Wonderful Breast Cancer Exercise Program

From time to time I get a solicitation from someone who wants me to share something on my Blog. (You'd be surprised at some of them, hence the need to monitor comments before allowing them to publicly post on the Blog. )

Most are quite worthy, and this is one of them.

Moving For Life, a unique aerobic dance-exercise class created especially for women recovering from breast cancer.  The class has been offered in the New York City area at no cost, for more than a decade, and now has been released on a DVD, MOVING FOR LIFE-DANCE TO RECOVERY, so women across the U.S. can benefit.

Take a peak here in a recent interview with two of the co-founders on NPR’s HERE AND NOW. It makes me want to stand up and dance right now, and probably will give you the same feeling.
According to the Moving For Life Non-Profit Website, "numerous recent medical studies conclude that regular aerobic exercise after breast cancer helps alleviate side effects of treatment, prevent recurrence, and renew a sense of self and community. MOVING FOR LIFE focuses on these aspects directly creating a fun and supportive environment in the process.

Winner of 2010 Susan G. Komen Grant, MOVING FOR LIFE was created by three friends, Dr. Annie Rosen (psychologist and breast cancer survivor), Dr. Martha Eddy (exercise physiologist), and Jan Albert (film and television producer), in reaction to watching close friends and family struggle with cancer treatments."
The DVD MOVING FOR LIFE-DANCE TO RECOVERY includes seated and standing exercises set to upbeat pop music, interviews with a leading breast surgeon, and reflections from the dancers on their recovery experiences and offering words of encouragement.

If you are going through breast cancer treatment, are a cancer survivor, or know someone who is, please share this information. Thank you!

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


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