ISRAEL: Part II of IV: Living with Metastatic Breast Cancer

ISRAEL: Part II of IV: Living with Metastatic Breast Cancer

Neta sat down with World Mom contributor, Susie Newday in Israel to talk about living her life with metastasis breast cancer.

Neta sat down with World Mom contributor, Susie Newday in Israel to talk about living her life with metastasis breast cancer.

This is part two of our contributor and cancer nurse, Susie Newday’s, moving and in depth interview on breast cancer with her close friend. Grab a cup of something warm, and come be a fly on the wall with us, as two friends discuss living with metastatic breast cancer. There is something for us all to learn. (Click to catch up and read Part I, first.)

Susie: You know what I remember? I remember before I worked in oncology, when you were diagnosed for the first time. You were waiting for your scan results to see whether there was any metastases and you said to me, “If I have metastasis, my life is over.” When you were diagnosed with the recurrence was that the same feeling you had?

Neta: Yes, that was my feeling. I said to myself, I’m screwed. With metastasis you don’t recover. You get another year or two.

S: Or maybe longer.

N: I have to say that I have a hard time believing that. I don’t really see that in the cards.

S: I wish you many more years.

N: I wish. And I thank you very much, and I hope I do. I’m not saying I want to die, I don’t. I’ll be happy to be surprised for the good but the feeling is that this is the end.

S: You walk around with the feeling everyday?

N: Now it’s less. Since I lived through the setback I had with the bleeding in my brain, and everyone told me that I’m a medical miracle, I now say to myself that maybe there are miracles out there.

I am more open to the possibility that maybe there will be a miracle here, something I refused to believe beforehand when my cancer recurred.

S: Tell me what happened with your setback and the hospitalization.

N: When I was rediagnosed, I was receiving Aredia to strengthen my bones and a biological treatment that was part of a clinical trial. I went back to work. About two or three months after that I began having severe weakness. My hemoglobin kept going down and they decided to hospitalize me. My oncologist told me that the cancer has reached my bone marrow. I was hospitalized in the regular medical ward for a week and a half until space opened up in the oncology ward and then they moved me. I received blood transfusions and chemotherapy.

A day or two after I was moved, I started having confusion, and then I couldn’t see. For about 5 days I had what seemed like a gray veil over my eyes. I don’t remember much but they told me I was really confused, and they had to appoint a legal guardian to make my medical decisions. To do that I needed an interview with the psychiatrist. He asked me a lot of questions which I don’t remember,

but I do remember that he asked me how old my children were and I couldn’t tell him. I knew their names but not their ages.

My husband brought the kids to visit me, but afterwards he told me that it was a difficult decision whether or not to bring them because I couldn’t see, and they didn’t want the kids to get scared. He had consulted with the psychologist who said to bring them because it’s better for them to see their mother even if she is confused and doesn’t see than not to see her.

It was 5 very difficult days. They ran all kinds of tests from eye tests to an MRI. I remember being very afraid before the MRI. I remember them saying it’s a very important test to see what’s going on. Inside the machine everything was rotating, and there was a horrible noise. I remember it being very traumatic, also the MRI test itself and also the fact that I knew it was a very important test, and I didn’t know what they were looking for. After the fact, I now know they were looking for metastases in the brain. They didn’t find any, it was only a brain bleed, and then they said the situation is better than they thought.

I don’t remember everything from those days. I remember people coming to visit. I recognized the people who came.

Later on, I found out that my husband already prepared the older girls a bit to expect the worse. They said psalms, and no one really thought I was going to recover because my medical state was not good. Then on the fifth day I woke up in the morning, my mother came into the room, and I was able to see her.

The doctors came, and they did tests. My eyesight came back, but slowly. Even now I can see perfectly from far but my vision from close is still impaired and interferes with reading. But at least I see the world, I see things. I don’t need help walking.

Since that incident I say to myself maybe there is some kind of miracle going on here, maybe there is some kind of divine intervention. In the hospital everyone was saying they had never seen someone recuperate like I did with their eyesight returning. Maybe it had something to do with my willpower. After my husband was diagnosed, I realized why it was that I pulled through, why I’m still here. I’m here to organize things and take care of my family. It is much harder when both parents are ill. I couldn’t “go” and leave my husband here alone to also fight his disease and raise the children because it is impossible to do. Apparently someone up above realized that I’m still needed here. That’s the answer I give myself. No one has said that to me, I just feel it. No one has answers but after my husband was diagnosed with cancer I just understood why I am still here.

S: When was your husband diagnosed?

N: January 2013. He was admitted with a bowel obstruction and then was diagnosed with Metastatic Colon Cancer. He was diagnosed about 2-3 months after my prolonged hospitalization, and I hadn’t really recuperated yet. I had slowly been getting better. I would be hospitalized for a week or so and then released and then hospitalized again for a week. It was a big shock having another person in the family sick. When he wasn’t feeling well and needed to go to the Emergency Room I still wasn’t feeling great and I couldn’t drive. His brother came and picked him up.

S: What was going through your head when your husband was diagnosed?

N: That someone up above is crazy. It’s not just that I’m sick, and now he’s sick. It’s the fact that both of us are in a situation where the doctors are not optimistic. It’s not a situation where you can say to yourself that I will definitely beat this. It could be 1, 2 or 3 years. No one has any idea how long you have for sure. I said to myself and to God, why him? * He is such a good person. For sure he hasn’t sinned. Maybe I sinned unwittingly but him? With my husband it seemed like a different level, it was like he doesn’t deserve this. He is such a good person.

S: And you deserve it?

N: No. But HE is really a good person. He’s a better person than me. He has a good heart, he doesn’t hurt people. * I just couldn’t reconcile how it was possible that he could be sick because he didn’t deserve it because he is such a good person. You start saying to yourself that God went crazy. Is there no justice in the world? Two young parents with 4 children are both now sick. Something went wrong. Either God is putting us through some great trial or I don’t know what. It’s not fair. I felt very strongly that it was just not fair that he was sick too, it was enough that I was sick.

*(I went to get some tissues at this point for her, which were easy to find because as she said there are lots of tissues in her house.)

S: I think that women and especially mothers don’t see ourselves the way other people see us. We are very generous towards other but we don’t cut ourselves any slack. I’m flabbergasted how you’re talking about how your husband doesn’t deserve this to happen to him and you do? (We both started laughing at that point)

N: He is the kind of person who if you ask directions on how to get somewhere, even if it’s out-of-the-way he will take you there. I would try to explain, I would not take anyone all the way there.

S: What good things do you see in yourself, what things do you do that are good and that are unique to you?

N: I have more sensitivity to people. My husband doesn’t see certain things that I’m more intuitive about, also in life and also in work. Part of my job was to be sensitive to kids. I have more sensitivity to my surroundings which my husband might sometimes miss because he just doesn’t see it. I can be a good friend. As far as the kids, I’m more involved, I am with them more. I never said I don’t do good things. My husband is just good.

S: Were you always as involved with your kids or is it more since you have been sick?

N: It was always very important for me to be a mother, to be with the kids. The thing that stressed me out the most when I got sick was the kids, what’s going to be with the kids. I still struggle with that. I was always with them. After my births I took extended maternity leave. I saw motherhood as a very important role. I always had that, it’s not something that started now.

(For the full series: click here to read Part Iclick here to read Part IIclick here to read Part III and click here to read Part IV.)

This is an original post to World Moms Blog by our Africa and Middle East Editor, Susie Newday, in Israel. 

Photo credit to the author. 

 

Susie Newday (Israel)

Susie Newday is a happily-married American-born Israeli mother of five. She is an oncology nurse, blogger and avid amateur photographer. Most importantly, Susie is a happily married mother of five amazing kids from age 8-24 and soon to be a mother in law. (Which also makes her a chef, maid, tutor, chauffeur, launderer...) Susie's blog, New Day, New Lesson, is her attempt to help others and herself view the lessons life hands all of us in a positive light. She will also be the first to admit that blogging is great free therapy as well. Susie's hope for the world? Increasing kindness, tolerance and love. You can also follow her Facebook page New Day, New Lesson where she posts her unique photos with quotes as well as gift ideas.

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WORLD TOUR: Do You Really Know About Breast Cancer?

WORLD TOUR: Do You Really Know About Breast Cancer?

It is that time of year again. The weather is turning colder, the leaves are beginning to change, Halloween costumes are being picked out, and there is pink everywhere you turn. Yesterday as I was taking my daughter to the park I drove by a large piece of plywood with a painted pink pig on it, 20 or more pink painted pumpkins, and breast cancer ribbons on the lawn of a local realty company. I am sure this serves some purpose, but it was lost on me.

October for me is always bittersweet. While I welcome the awareness, and messages of the importance of self exams and early detection, I am constantly reminded of the disease that took my mother’s life 15 years ago and of my own battle with breast cancer three years ago.

KatForce4

At 32 I was diagnosed with stage II B triple negative breast cancer. Life was good, my husband and I had been married for eight years, my daughter was four months old and my son was a few months shy of his third birthday.

It was a Friday night that I received the news that sent me crashing to the floor. A few days prior to my diagnosis my obgyn told me I was too young to have breast cancer.

Although I knew this to be untrue, I still found comfort in his words and convinced myself it was a clogged milk duct.

Two weeks later I underwent a bilateral mastectomy and four weeks following surgery I began my five month chemotherapy regiment. At the end of my chemo treatment I had genetic testing to see if I carried the BRCA mutation (a.k.a the breast and ovarian cancer gene). I was in fact positive for the gene mutation and for some reason I was surprised by this news, even with my strong family history. The reality then struck me that my children have a 50% chance of inheriting the BRCA mutation, putting them both at risk for breast cancer and other cancers including ovarian, prostate, and pancreatic.

Knowledge is power. Although my cancer journey has been difficult and it was very difficult to hear that my children and sisters could be at high risk, the knowledge that I am a carrier of the BRCA mutation has helped us to stay one step ahead of cancer.

A year following my diagnosis I had my ovaries removed to eliminate the risk of ovarian cancer.  I firmly believe that if my mother had had that knowledge, treatment would have been more aggressive and she would have won her battle with breast cancer, before it became metastatic. I also believe that if I had the knowledge prior to my diagnosis, I would have been able to avoid my cancer diagnosis through a prophylactic mastectomy or at least been able to catch it earlier through increased screening.

KatForce1

I  had heard about the genetic test in my twenties, but I did not know that if I tested positive I could have up to an 85% risk of developing the disease and a 40% risk of developing ovarian cancer. I did not know that I could have had a prophylactic mastectomy that would lower my lifetime breast cancer risk to less than the U.S. national average, which is currently 12%.

However, I do not live in the past. I have embraced my cancer journey and all that has come with it.

Having this knowledge will benefit my sisters and my children most of all.

We make life choices that promote health and wellness and I feel that is a gift I can give my children. One day, they will be armed with the knowledge they will need to make informed decisions as they become old enough to have the genetic testing.

FORCE, Facing our Risk of Cancer Empowered, is a non-profit organization dedicated to supporting families affected by hereditary breast and ovarian cancer through education, support, and resources. There are local chapters throughout the United States and in other countries including Canada, Israel, and Australia. The World Health Organization reports that in 2010 there was more than 1.6 million cases of breast cancer worldwide, making it the top cancer for women in the developed and developing world. Although BRCA mutations are a just a small portion of these cases, there are certain groups that are at higher risk of carrying the mutation. These are people with Ashkenazi (Eastern European) Jewish ancestry and people of Norwegian, Dutch, and Icelandic ancestry.

I am now the Raleigh, NC area FORCE Outreach Co-Coordinator and we are a resource for women in the North Carolina area that have a strong family history of breast cancer or have tested positive for the BRCA mutation. We have support group meetings and work with the local genetic counselors.  I am very excited to help bring support and education to families affected by hereditary breast cancer and to make sure women have the information they need to make informed decisions. We need to be our biggest health care advocates and doctors need to get the word out on genetic testing and how it can save lives.

Pink-Tober is in full swing and I hope that we can ignore the commercialism of it (and the giant pink pigs) and focus on its real purpose. Early detection saves lives! If you have a family history, please speak with a local genetic counselor.

If you notice a lump, or any changes in your breasts, get it checked out and don’t allow your concerns to be dismissed by your doctors.

Too many of our mothers, sisters, aunts, cousins, and daughters are losing their battle to this terrible disease. Until there is a cure, we need to focus on education, surveillance, and early detection.

To find out more about FORCE and hereditary breast and ovarian cancer please visit http://www.facingourrisk.org

To find out more about breast cancer in young women go to

http://www.youngsurvival.org

Risk factors for hereditary breast and ovarian cancer

http://www.facingourrisk.org/information_research/publications/documents/brochures-family-history.pdf 

From the FORCE website:

How are hereditary cancers different?

  • Hereditary cancer tends to occur at an earlier age than the sporadic form of the same cancer, so screening and risk-lowering recommendations for hereditary cancer may be different and may begin at an earlier age
  • Hereditary gene changes and the accompanying increased risk for cancer can be shared by relatives and passed on to children.
  • People with hereditary cancer have a higher risk for more than one type of cancer. In people who have already been diagnosed with a cancer, this may affect their cancer treatment or follow-up care.
  • Specific screening or risk-lowering options are recommended for people at high risk for certain types of hereditary cancer.

Note: If you believe that breast or ovarian cancer runs in your family, you should contact a cancer genetic counselor, geneticist, or equally-qualified health care provider. These health care professionals can help determine your risk for hereditary cancer, inform you of available genetic tests and their benefits and limitations, order appropriate genetic tests, assist with insurance reimbursement of tests, and interpret the test results.

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This is an original guest post to World Moms Blog. Katerina is a mom to Nathaniel, 6 and Lillian,4 and two labs Sasha and Dakota. She is a NJ native and recently relocated to Chapel Hill, North Carolina. Kat helped to start a young survivor breast cancer support group at UNC. She is happiest when she is enjoying the fresh air with her family, especially at the beach. Kat is passionate about nutrition and health. She feels so fortunate for every day that she get to spend with her husband and children. Every day is a gift.

Photo credit to Katerina Gmitter

World Moms Blog

World Moms Blog is an award winning website which writes from over 30 countries on the topics of motherhood, culture, human rights and social good. Over 70 international contributors share their stories from around the globe, bonded by the common thread of motherhood and wanting a better world for their children. World Moms Blog was listed by Forbes Woman as one of the "Best 100 Websites for Women 2012 & 2013" and also called a "must read" by the NY Times Motherlode in 2013. Our Senior Editor in India, Purnima Ramakrishnan, was awarded the BlogHer International Activist Award in 2013.

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