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.


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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Wednesday, October 30, 2013

Feeling Liberated

In my last post, I talked about the procedures I had done on Monday, October 28, 2013 at Memorial Hospital. Thank goodness all went very well and exactly as expected. Mark, Alura and Sarah were all there with me for the day which was wonderful. 

As with any surgery, there are risks, and while I really didn't want to divulge them here ahead of time, kind of like jinxing myself, they were serious and deadly, but in  low percentage of possibility. But when you are talking about the heart, that just causes more anxiety than I hope to go through again.

Since I had already been through a stress test, my cardiologist, Dr Dhar, was 99% sure that there was no blockage or other abnormalities. But he said he has been surprised before. And those things could mean stents, or even open heart surgery to correct the irregularity while doing the catheterization. They had to go through the groin to access everything, since my hand didn't seem to be working for the nurses and doctor. Now I have a serial-numbered dissolveable plug there. Oh the techno things available to us these days. And during the procedure, I was somewhat awake, but couldn't feel a thing. So I watched along on the monitors, not really knowing what I was watching. But it was interesting! :-)

Once the cardiac catheterization procedure was done at about 9am, Mark, Alura and Sarah came back in to see me and visit before the ICD Implant.  But first Dr. Dhar showed them the video of my heart and the catheterization to show there was no blockage or issues needing correction. For the ICD Implant, I remember being wheeled into OR, meeting all the nurses, anaesthesiologist, etc; chatting with them, etc. But I do not remember seeing Dr. Chang-Sing or anything more about the procedure, which is just as well as far as I am concerned. And yes, this had severe risks too, but a necessary step in me getting on with my life, hopefully in some sort of normal manner.

Like I mentioned in an earlier post, an ICD is not a pacemaker, as most people think. It does have a pacing function, if need be; but it is a full blown defibrillator. It will "treat" me at any time it feels the need. But it will first attempt to correct any irregular rhythms in a more gentler manner. So unlike the exterior Zoll Vest, I cannot reset it should I think it is treating me unnecessarily. It will just do it! But apparently this vice emits a vibration first as sort of warning, so I can sit or lie down, or be somewhat prepared. Oh fun!!!

There is a bit of a recovery with the ICD procedure -- no driving for two weeks, some bathing precautions to prevent infection, no lifting or reaching overhead or heavy arm use for 6 weeks to allow the device and leads into the heart to take a solid hold. But by the first of the year, I'll be back to lifting those sweet grandsons.

But the liberating part is no longer needing the Zoll Vest. It is all ready for return, along with the cloth vests, once the shipping box arrives in a day or two. I've almost stopped turning around every time I get up from a chair or the car or something, to grab the controller box that I'll set off to the side to give my shoulder a break. And having it lay in the bed between Mark and I at night was no fun too. Not to mention the times it would alert me and almost scare me out of my wits, thinking it was about to treat me. And this happened a couple of times in the middle of the night.

Then there was the bathing restrictions, no hot tubbing, or swimming at all, needing someone with me when it was off -- so scheduled showers. The inconvenience of having this convenience. But I am so grateful to have had it available to me for the past 3.5 months.

We are both very relieved to send it back to Zoll where it can be cleaned and prepared for another patient with this need.

While I am out of the woods, I am far from back to normal. My EF was found to still only be at 15% during the catheterization, which was disappointing to say the least. But in time, and with the medications I am taking, I hope to get it back to something more normal and remove the thought of future heart transplant or VAD Ventricular Assist Device surgery from my mind. 

For now, I have the safety net of my St. Jude ICD Implantable Cardioverter Defibrillator to help me go about my normal routine and not worry so much. On to bigger and better things, for sure...

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


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Sunday, October 27, 2013

Procedure Day

Tomorrow is the big day.... Procedure Day.
Up bright and early for the cardiac catheterization followed by an ICD implant (pacemaker/defibrillator. 
If all goes as planned, I'll stay overnight in the hospital so the doctors and nurses have time to make sure everything is operating properly, and then will return home the following day. Recovery is a couple of weeks initially, then a total of six weeks where I can't lift or reach overhead so the ICD and leads have the chance to take hold securely. Then every 6 years or so I'll get a new ICD as the batteries last about this long.
One thing for sure is, even though there is anxiety with any hospital procedure, Mark and I are both so looking forward to saying adios to "my little friend", as Mark calls it, the Zoll LifeVest, which is an external defibrillator vest. Not only is this device a life saver, literally, but it can also be a pain too. So just to no longer need to wear it 24/7, have the controller unit slung over my shoulder, and the vest around my chest, both connected by a long cord, will be quite a relief. Being able to change into a clean vest, or to shower or bath whenever I want, without needing someone nearby "just in case" will be wonderful. 
 The controller unit worn on a shoulder strap.
 Yippee; clicking heals!!!
Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!


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Thursday, October 3, 2013

Cardiologist - check; Oncologist - check

Yesterday and today we spent driving into Santa Rosa for doctor appointments. Wednesday was for a return to my cardiologist for a new Echocardiogram to see how my heart was doing. Of course both Mark and I were hopeful that there would be some improvement. An Ejection Fraction of 35% or below qualifies one for an implanted cardioverter defibrillator (ICD). That kind of improvement, from the 15-20% I had back in July and August, would have been miraculous in only three months. But one can hope, can't they?

It was disappointing to learn my EF is a"about the same" which means somewhere around 15-20%. I know that expecting much of an improvement was dreaming on my part, but then this all feels like a dream anyway. Mark and I are still waiting to wake up! But the good news is that I feel so much better than I did a month or two ago. I'm down 20 lbs, so that is definitely helping both me AND my heart.
The next step is that I am scheduled for both a cardiac catheterization and then the ICD implant at the end of this month. The cardiac catheterization is done first, to absolutely rule out any blockage or other damage that might be repairable. If a blockage is found, a procedure or stent might be performed to correct an abnormality, which might mean no need for the ICD. My cardiologist says that normally there is a 5-10% chance that this happens during the catheterization. But he feels that with our familial heart history, it is more like a 1% chance for me. 
Cardiac catheterization also might be used if your doctor thinks you have a heart defect or if you're about to have heart surgery. The procedure shows the overall shape of your heart and the four large spaces (heart chambers) inside it. This inside view of the heart will show certain heart defects and help your doctor plan your heart surgery. Sometimes doctors use cardiac catheterization to see how well the heart valves work. Valves control blood flow in your heart. They open and shut to allow blood to flow between your heart chambers and into your arteries. Your doctor can use cardiac catheterization to measure blood flow and oxygen levels in different parts of your heart. He or she also can check how well a man-made heart valve is working and how well your heart is pumping blood.

Click this link to see an animation of cardiac catheterization.
In my case the cardiac catheterization will also be used to locate the appropriate vein(s) for the ICD implant. So more than likely, the catheterization will be immediately followed by the ICD implant. A technician from the ICD manufacturer will be there during the surgery to fine tune the ICD to my needs. 
I'll stay overnight in the hospital so the doctors and nurses have time to make sure everything is operating properly, and then will return home the following day. Recovery is a couple of weeks initially, then a total of six weeks where I can't lift or reach overhead so the ICD and leads have the chance to take hold securely. Then every 6 years or so I'll get a new ICD as the batteries last about this long.
So then today we saw my oncologist for a routine 6 month check up. Although I'm glad the appointment fell when it did because a week ago this red itchy patch appeared on my right breast near the nipple, and I became anxious to rule out Inflammatory Breast Cancer. My oncologist feels pretty confident that these suspicious looking spots are not cancer, but are probably some sort of skin reaction. I'm to watch them for a week or so, and if it doesn't go away, or gets worse, get back in to see him so we can investigate further. That was good news, FOR SURE!
So no more doctor appointments for awhile. That feels good to know, for sure. We all have our challenges, don't we? I'm so grateful for each new day.
Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!


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Wednesday, October 2, 2013

Inflammatory Breast Cancer (IBC)

I just learned about a rare breast cancer that is often misdiagnosed, often not reported or suspected as cancer by patient, and is very agressive. It is Inflammatory Breast Cancer.

During this, National Breast Cancer Awareness Month of October, Please, PLEASE, become aware of the signs and symptoms of IBC and share with other women and girls.

In a nutshell, here are some of the things to watch for:

Inflammatory Breast Cancer is rare and the vast majority of women do not have any idea what it is. In fact, some doctors have never seen a case of IBC and they may not properly diagnose the condition. A mammogram will not normally detect IBC since there is not a lump in the breast with this type of breast cancer. If symptoms crop up, an infection is what leaps to mind, not cancer.

Here are what the symptoms are:
1. redness of the breast. (The skin may appear pink, reddish purple or bruised.)
2. swelling of the breast
3. a feeling of one's breast being warm
4. peau d'orange (skin that looks like the peel of an orange)
Other symptoms may include:
  • an ichy feeling, or suspicion of a bug bite. 
  • burning sensation in the breast
  • heaviness of the breast
  • aching
  • increase in breast size
  • tenderness
  • having a nipple that is inverted
  • swollen lymph nodes
These symptoms do not necessarily imply that a woman has inflammatory breast cancer, but the symptoms should suggest that IBC is a distinct possibility. Typically, IBC will not show up on a mammogram and a breast MRI and a punch biopsy are required to make a definitive diagnosis.

Because of the way inflammatory breast cancer (IBC) grows and spreads, a distinct lump may not be noticeable during a clinical breast exam, breast self-exam, or even on a mammogram. However, signs of IBC can be seen on the surface of the skin, and skin thickening often shows up on a mammogram and can be seen during a clinical breast exam or breast self-exam.

Symptoms of IBC can develop very quickly, so women should pay attention to how the skin on their breasts looks and tell their doctors about any changes in skin texture or breast appearance.
In women who are pregnant or breastfeeding, breast redness and swelling is more often caused by an infection than by IBC, so doctors might try treatments like antibiotics for a short time first. The possible diagnosis of IBC should be considered more strongly when a woman who is not pregnant or breastfeeding comes in with these symptoms. Breast infection is less common in women who are not pregnant or breastfeeding, and even rarer in women after menopause. When infection occurs it is usually associated with fever or other signs of infection. 

Following American Cancer Society guidelines for early detection of breast cancer can improve a woman's odds of finding most types of breast cancer early, when it can be treated most successfully. Unfortunately, because IBC grows and spreads so fast, screening is not generally helpful for finding this disease early. 

This link to the National Breast Cancer Foundation is a good one about IBC. And another great link from American Cancer Society here.

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


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Tuesday, October 1, 2013

October is National Breast Cancer Awareness Month

Repeating post of October 1, 2012

In honor of Breast Cancer Awareness Month, October. 

Heaven knows I am learning of new breast cancer diagnosis, or serious recurrences of breast cancer, often times metastasis, nearly weekly. Lets all do whatever we can to see that all women are aware of the breast cancer risks, and that research soon puts a stop to this life-changing, and often deadly, disease.

Today I donned my breast cancer awareness bracelets. I had worn most of them pretty much 24/7 once I was diagnosed, and through that first year of treatment. Then somewhere during that second year, I needed a break from being that poster child with the permanent reminder on my wrist(s).

But all three are very special to me, and remind me of very special people in my life. The first one, the CELEBRATE COURAGE, pink bracelet was a gift from cousin/niece Jecca. Actually she is a cousin, but because she is my daughter's age, she calls me Auntie, which I treasure. She is the daughter of one of my dearest cousins, Terry, whom I consider like a sister to me. When Jecca learned that I had breast cancer, she purchased bags of these bracelets to give to her family and friends, and for me to do the same. And I see her Dad is still wearing his faded pink bracelet. Thank you, Jecca.

The next bracelet, the beaded one with the breast cancer symbol, was a gift from my sister, Nancy. Nancy had been traveling to New York and struck a conversation with a flight attendant who was wearing this bracelet. She told Nancy her story and how she had made the bracelet; and Nancy told her about me. As the passengers were departing the plane at the end of the flight, she came out after Nancy calling for her to wait. The flight attendant gave the bracelet to her. Soon thereafter, the sisters were having lunch. As Nancy was telling me the story, she took the bracelet off her wrist and gifted it to me. It was a sweet and special moment. Thank you, Nance.

The third bracelet is from a dear "long distance friend", Michelle. Michelle is the mother of one of my daughter's friends, and someone I've met a couple of times at fiber events. From the moment I met Michelle, I felt a warmth and friendship to her. Then when the "lost year" began, Michelle became one of the tried and true followers of my blog, frequently commenting and offering long entries of love and support. She came across this bracelet at a local event where she lives in Michigan. It is the Circle of Hope bracelet, and was designed by a woman with breast cancer who has since lost her battle. The bracelets are still sold as a fundraiser. It is a beautiful bracelet in "my colors", and I love wearing frequently. Thank you, Michelle. I miss you!!

As I was into writing this post, I realized there were three more bracelets presented to me during treatment. One, a Livestrong bracelet presented to me by my sweetie those first few days after diagnosis. The second, a beautiful beaded handmade bracelet, made and given to me with the sweetest of notes from my niece, lovely Kiana. And last, just as special as all the rest, a beautiful bracelet comprised of tiny dangling stones given to me by my sister Donna, on her first of two visits out here during treatment and surgery. She was here to help Mark shave my head, and here during surgery -- a love of a sister to make the trips and devote the time to me and my family. (Okay, couldn't find post of when Donna gave me the bracelet, but instead found this fun slide show of her visit, shaving the head, tattoos, and just memories that brought tears). 

Thank you Kiana, Donna, and Mark.

So, while my memory of all the stories above may not be totally accurate, I will blame any inaccuracies on chemo brain.  :-) And I have linked each paragraph some of the original blog entries on the subject.

But regardless, these bracelets bring me warm loving thoughts from just a few of those who were so giving to me and my family during my treatment. Thank you so very, very much. Your kindness, love, and support were very instrumental in my healing and I can't thank you enough.


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


ICD vs Pacemaker

ICD - Implantable Cardioverter Defibrillator vs Pacemaker

I often get the question if the ICD I'm getting is like a Pacemaker. Here are the key points of an ICD and differences from a pacemaker.

ICD Key Points
  • An implantable cardioverter defibrillator (ICD) is a small device that's placed in your chest or abdomen. This device uses electrical pulses or shocks to help control life-threatening arrhythmias (irregular heartbeats).
  • An ICD has wires with electrodes that connect to one or more of your heart's chambers. The ICD will continually monitor your heart rhythm. If the device detects an abnormal heart rhythm, it will use low- or high-energy electrical pulses to restore a normal rhythm.
  • An ICD isn't the same as a pacemaker. A pacemaker can only give low-energy electrical pulses to correct certain irregular heartbeats. An ICD can give the high-energy electrical pulses needed to correct dangerous arrhythmias in the heart’s lower chambers, the ventricles.
  • Your doctor may recommend an ICD if you’re at risk for a ventricular arrhythmia or if he or she sees signs of a ventricular arrhythmia (or heart damage that would make one likely) on test results. He or she also may recommend an ICD if you survive sudden cardiac arrest or are at high risk for the condition.
  • Surgery to place an ICD usually takes a few hours. After this minor surgery, you may have mild pain; over-the-counter pain medicines usually can relieve it. Talk to your doctor before taking any pain medicine.
  • The most common problem with ICDs is that they can sometimes give electrical pulses that aren't needed. Doctors can reprogram ICDs or prescribe medicines so the electrical pulses occur less often. Other, rare risks are linked to the ICD surgery, such as infection and bleeding.
  • The low-energy electrical pulses your ICD gives off aren't painful. You may not notice them, or you may feel a fluttering in your chest.
  • The high-energy pulses or shocks your ICD gives only last a fraction of a second and feel like a thumping or painful kick in the chest, depending on their strength. Your doctor may give you medicine to decrease the number of arrhythmias you have. This may reduce the number of high-energy pulses sent to your heart.
  • Once you have an ICD, you have to avoid close or prolonged contact with electrical devices or devices that have strong magnetic fields. You also need to avoid medical procedures that can disrupt your ICD. Let all of your doctors, dentists, and medical technicians know that you have an ICD.
  • Your doctor may ask you to avoid vigorous exercise and heavy lifting for a short time after your surgery. After you’ve fully recovered from surgery, discuss with your doctor how much and what kinds of physical activity are safe for you.
  • Have your ICD checked regularly. Some ICD functions can be checked remotely through a telephone call or computer connection to the Internet. Your doctor may ask you to come to his or her office to check your ICD.
  • ICD batteries have to be replaced every 5 to 7 years. The wires of your ICD also may have to be replaced eventually. You doctor can tell you whether you need to replace your ICD or its wires. 

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



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