Be Proactive

My mom Debbie passed away in Feb. ‘08 two weeks before her 52nd birthday. Being just last year, I still struggle with grief, anger, guilt, and random thoughts pop up throughout my days about her. My son Chance still asks if he can see nana, and I have to gently remind him that she is in heaven, and sometimes he will tell me that he dreamt about her, that she came to visit him when he was asleep. I am still so struck by the last year of her life, how everything was for us with her living with me that I can’t help but think about life and death. In fact it’s all I have thought about for the last several years, I sometimes fear I brought this cancer on myself because of my inability to escape emotionally from it. Her face in the very last second of her life, the tears that sprang up in the moment the nurse called time of death is imprinted in my brain forever, and the experience of having to decide to give her morphine for comfort- knowing there was no turning back if we did- is like it happened yesterday. It’s kind of funny because she drove me nuts, she literally made me so crazy I had to see a therapist when the cancer travelled to her brain just so I could deal with her. I would happily have killed her myself most days. But I did love her, and I do wish she were here now, her crazy faults and all. She always thought I didn’t listen to her, but I must have because it’s a year later and I can’t get her words or actions out of my head. This post is partly about doctors, and about being proactive with your health. About caring enough about yourself to want to live, and for fighting for your right to it.

My mom was diagnosed with lung cancer Dec. of 2006. I was very pregnant with Sinclaire, Chance was only 1 years old and she was living with my family. Hank, my stepdad died of liver cancer about 5 years ago now, so she was passed around staying with friends and family until she settled with me-the only child- a few months before Chance was born and she never left for long after. For the record, she had COPD for years before her diagnosis. She wasn’t on an oxygen tank, and she never quit smoking. (don’t get me started on this subject) So with COPD, we had several trips to the ER because of breathing issues. Some thought I was insensitive when she was diagnosed but honestly I wasn’t surprised. I remember when she got the news. We were home, the phone rang, it was Dr. K and he told her point blank the test was positive for cancer and she had about 1 year to live. She broke down after hanging up thinking just that … not the cancer part. The other part. It is my belief those words shaped her entire experience and existence for the the next year that she was alive.

One year to live? Was he God? Did he have an ‘in’ with the powers that be that we didn’t, that he could tell her such news over the phone? Anyone ever heard of bedside manner, or even in-person manner? This post isn’t about bashing the doctor who treated her. In fact, he’s very nice and I’m sure adequate at his job. But looking back, we were ill-informed, and we could have done more if we had known we could, and how to go about it. For the most part, her chemo treatments were standard and the right choice. She had lung surgery on Dec. 12th, 2006 and started chemo a few weeks after that. By April or May, the cancer was gone. There were no more signs of cancer in her lung area, and it hadn’t spread anywhere else that the PET/CT scan showed.  The issue, the thing that signed her death certificate, was the lack of follow-up. After explaining in depth at our first meeting in the little room, how lung cancer will most likely travel to other parts of her body after surgery, and she wasn’t a candiate for radiation, one would think that check-ups at least every 6 weeks would be necessary. He gave her a cancer free bill of health, and said come back in 6 months. He is an oncologist, we were just uninformed family… if he said see you in 6 months, well that is good enough right, time to celebrate? No. When she went back in 6 months for a CT scan and blood tests, they were clear as well. No cancer. Excellent news, except something was off with her. And this is where I blame myself. I could see that something wasn’t right, her speech was sometimes slurred, she would forget things, and she would call my kids by other names. I asked again about the tests, they assured us she was fine. Two months later, on Dec. 10th, 2007 she passed out and was taken to the ER where they found a large brain tumor near her ear on the right side of her head. The lung cancer had been spreading to her brain and growing, in fact there were about 4 tumors the largest being operable and the others needing radiation. She was taken to OHSU (different than her previous onco and highly recommended). One year to the day of her lung surgery, she had brain surgery. It was an emergency situation as the pressure from the tumors was expanding her head, and they had to drill a hole just to relieve the pressure or else.. well. The surgery went well and she had a great recovery. Once she healed from that, she was scheduled for radiation with Dr. Fuss at OHSU- an amazing radiologist who not only answered all of our questions from a medical viewpoint, he believes in life and quality of life, called me on the weekends to give me updates and worked through her fears of being in that mask that had to go over her face so they could treat the tumors. Needless to say, she passed away 2 months later on in Feb,08.  (Edit- not because of the brain tumors, because her lungs gave out ) Regardless of everything and how hard it was, I do think it was her time because she didn’t have the will to fight anymore. From the beginning, she had sort of a defeatist attitude mostly I’m sure, because the very first words spoken to her were ‘you have cancer and one year to live.’ We asked Dr. Fuss for a timeline on her life, the last onco had given us one so we thought it best to be prepared. He refused, he said with proper treatment and response, you can’t put a time on someone’s life. If only someone had told us this sooner.

The morning of the appointment where I was to get the results of my biopsy was somber, and I was quiet. I knew the results beforehand, I could feel it, I had felt it for some time. For several months before my trip to the ER I was waking up in the middle of the night with cold sweats terrified that someone was trying to break into my home. I would stay up for hours, scared of some imaginary force that I was positive was real. The doors were locked and barricaded, it would take some serious professionals to get in, but I wasn’t soothed. About a month before, I was looking at my moles, I have one on my left shoulder that has jagged edges and I was trying to figure out if it had changed, then I moved on to my husband who is a redhead and has lots of those bright red moles, I was tuning into my young children trying to ‘hear’ if there was something wrong with them . I was searching for something, one friend told me it was like I was waiting for the ball to drop. Out of all the things I thought was looming, breast cancer – and especially Inflammatory Breast Cancer – was not among them. I still am not convinced it’s really happening. That morning after getting my mocha on the way to the doctor’s office, I could visibly see my mom in my mind, and I could feel her with me and I would swear I heard her say ‘do it better’. I told Ken, my husband and he thought it made alot of sense, that if I were to learn from her mistakes… fighting to live and wanting to live, and beating this cancer would be something big that I could take from her experience. I went all the way to think that maybe the whole point of her living with me during those trying times was to show me first hand how to do it better than she did. In the grand sense of the ‘bigger picture’ and some lessons aren’t learned until years later, this makes sense to me. I am thankful to her for telling me that beforehand, right before that doctor’s appointment, and I’m convinced it was her now because of what happened.

The surgeon came in to give me my results, and the words out of his mouth were ‘you do have advanced invasive breast cancer, several tumors are positive for it (3), and I would be very surprised if it isn’t in your lymph nodes and probably beyond in other organs as this is a very large aggressive mass’. I had already done my research on IBC, and knew I needed an onco who was smart enough to deal with it pronto, so I said ‘get me into an oncologist today’. He said ‘now now, there’s no need to rush… this isn’t something that has happened overnight, they have been there a very long time, we’ll get you into one but it’s not like an emergency situation where you need to be seen today.’ I knew intuitively he was wrong, that he didn’t know anything about IBC. I walked out of that office picturing my baby girl’s face, almost posively crushed at the thought that I might not be alive in a year to see her 3rd birthday. By the time I got home though, I was mad and I contacted an IBC site who put me in contact with someone else who knew that what he had said was malarkey, and in 2 days I had found my own oncologist who knew what IBC was, and how to treat it effectively, and how important it is that I DID get in that same day- not the next week. If I hadn’t done my research, if I hadn’t known to look for other sources… who knows how my outlook would have been hearing those words from his mouth. Turns out, I do have 3 positive tumors, but it hasn’t left my breast. It’s not even in my lymph nodes according to the CT/MRI/PET scan. That’s quite a bit of difference in diagnosis. I’ve been angry about that doctor’s appointment ever since, angry about his lack of knowledge on the subject, angry about telling a patient- any patient- that they have cancer but it’s ‘not an emergency situation’. I’ve been angry that my mom got a death sentence along with her diagnosis because I knew she wasn’t strong enough to emotionally combat what any doctor says. But I know now, that it’s not what we’re told by doctors, or anyone for that matter it’s how we respond, the actions we take in response to the info given. Even with what had happened, I was nervous and scared about seeking a second opinion, I felt they would be angry with me somehow. Never be afraid to get a second, third or fourth opinion. This is your health, my health, and the most important thing is being pro-active with our healthcare, not giving up, and not buying into a death sentence just because a doctor says so. If my mom had had an MRI instead of just a CT scan- that can’t read brain mass- we would have discovered those tumors well before they got to the point that they did. We didn’t know it was our responsibility to ask for that test. I guess my advice is don’t be afraid know the facts, know all of the options available to you, know all of the scenarios, seek out other people who have had the same experiences and are survivors, if someone says ‘my friend died of that’ find out why instead of being scared- it’s possible they caught it too late, or the physician didn’t know how to treat it, their diagnosis does not mean the same for you. My mom’s face on her deathbed is forever with me, day in and day out, and it takes alot to say ‘her situation is not the same as mine’. But I have to, for her, for my kids, my family and hopefully for other women out there who are facing this same scary monster or will in the future.

crossposted to http://lynkelley.wordpress.com

Unexpected Diagnosis

(cross posted from Coffee and Chemo, from a week ago)
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Several months ago, I noticed that I had stopped turning my head whenever I could avoid it. I positioned myself (and others) so that I could look at them “head-on.” I asked my kids to stand in front of me to talk, rather than turning around to face them when they called from behind. I had to concentrate more when driving.

When I mentioned my new limitations, my oncologist said we should do an MRI. Knowing that the health funds are reluctant to approve more expensive imaging, he sent me for a CT of my head and neck. I suggested that we should still try to get approval for the MRI, so he gave me a referral for that as well.

The CT did not show anything new. So, when the health fund approved the MRI, I questioned my doctor if it was really necessary. He said I should do it, so I did.

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Last Thursday should have been an ordinary chemo day.

I had some concerns about increasing pain in my bones, but my markers were still normal and there seemed to be no other indication that anything might be wrong.

So as we sat in our oncologist’s office, reviewing my case, Moshe casually asked our oncologist if he had seen the results of the MRI of my head that I had done over two weeks ago. Hadassa will not send the results to me, only to my doctor. Except, they had not sent the results to my doctor either. So my oncologist picked up the phone, called the radiology department at Hadassa Hospital and then excused himself to go pick up the fax of the MRI report.

A few minutes later, he walked in, placed the report on his desk, and announced that he did not like what he read. He was not joking around.

He called Hadassah again. This time he asked the head of the radiology department to look over the images. The head of radiology confirmed the report.

I have cancer in my brain.

“We were not supposed to know about this yet,” my oncologist pronounced.

I have no symptoms that prompted us to do the MRI.

“We did the MRI by accident,” continued my doctor, clearly disturbed up by this unexpected turn of events.

My oncologist asked to see the disc from the MRI, so that he could examine the images himself. Then he wanted to consult with someone else. We needed to make some decisions, and he wanted to take some time to consider the options.

I listened, as if from a different dimension.

My oncologist informed us that we can live with this. Brain metastases can be controlled and remain stable for years.

But it will not go away.

I wanted to know how this might affect my 20-year plan.

“Well,” my oncologist responded, taking his time, “twenty years is a long plan….”

We already established that 20 years was a bit of a long shot.

“I promise you that I will let you know when things are imminent,” my doctor told me seriously, referring to the end stages of cancer for the first time.

“I want to know before that,” I responded, explaining, “When things are imminent, you cannot do anything.”

“I want to know when I hit the ‘two year mark’” I continued, “I want to know when I still have the time and energy to go to Disneyworld with my kids!”

My oncologist turned serious again, “We usually do not discover tumors this early, before they are symptomatic.”

Once again, my case is unusual and leaves us full of uncertainty.

“When we discover large tumors with severe symptoms,” he continued, firmly but quietly, “two years would be considered a long time.”

I could no longer hold back my tears. As they rolled silently down my cheeks, I reach for Moshe’s hand.

“I want you to listen carefully to what I said…” my oncologist began, but I cut him off.

I understood. My tumors are small. I have no symptoms. The tumors can be controlled. I can live with this.

But no matter how you cut it, tumors in your brain are just not good.

My oncologist canceled chemo.

My head was spinning.

I needed to stop crying.

I did not want to go “out there,” to the chemo ward, where I am always smiling, with tears streaming down my cheeks.

I needed to hold myself together until I could get home.

Then I could fall apart.

My head was swirling.

How was I going to tell my mother?

How was I going to tell my kids?

Choose Life

(crossposted and edited from Coffee and Chemo)
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Our lives are filled with choices.

Almost two years ago, when I learned about my diagnosis, I made a choice, a conscious choice, about how I would live my life.

I stumbled, by accident, on frightening survival statistics of women diagnosed with metastatic breast cancer: only 20% are still alive five years after their diagnosis.

I determined right then and there that I intended to be part of that 20%.

I wish I could remember which angel directed me to the fabulous article by Stephen J. Gould, “The Median is Not the Message”. I think it might have been someone from Sharsheret, a wonderful Jewish American organization that provided me with tremendous support in those devastating initial weeks, before I found appropriate support here in Israel.

If you have not read it already, then I recommend doing so now. Go ahead. It will reshape the way you view the world.

I read “The Median is Not the Message” and realized that my determination to “beat the odds” is a rational possibility and not just “wishful thinking.”

Meanwhile, Moshe (my husband) was reading everything he could about my disease. My dear, loving, sensitive husband was devastated by the statistics.

I knew that Moshe, for whom logic and cold science are fundamental to how he views the world, needed to read the article.

That article was the greatest gift I could give him.

But I did not stop there. I had already begun formulating my 20-year-plan.

I figured that if I did end up living for another 20 years or more, it would be an aweful shame to live all that time worrying about dying tomorrow.

Besides, I joked, I “just need to live long enough for them to discover a cure.”

There is so much research going on every day, who knows what new medicines and miracle cures might be just a few years down the road?

We do not know what the future will bring. So why live expecting the worst? What a waste of our valuable time and energy.

In the past, I loved the adage “expect the worst, hope for the best, and you will never be disappointed.” Suddenly, this approach to life no longer served me well.

I shifted paradigms.

I chose to expect the best.

I chose to believe that I would live, that I would have a future.

In Parshat Nitzavim (the Biblical passages of Deuteronomy 29:9–30:20) which we read on Shabbat (the Sabbath), just before Rosh HaShanah (the Jewish new year), during the time when Jews are focussed on self-evaluation and repentence, Moshe Rabeinu (Moses, our teacher; not my husband) addresses Am Yisrael (the Jewish People) and proclaims:

הַעִדֹתִי בָכֶם הַיּוֹם, אֶת-הַשָּׁמַיִם וְאֶת-הָאָרֶץ, הַחַיִּים וְהַמָּוֶת נָתַתִּי לְפָנֶיךָ, הַבְּרָכָה וְהַקְּלָלָה; וּבָחַרְתָּ בַּחַיִּים, לְמַעַן תִּחְיֶה, אַתָּה וְזַרְעֶךָ
(דברים ל:יט)

I call heaven and earth to witness against you this day, that I have set before thee life and death, the blessing and the curse; therefore choose life, that thou mayest live, thou and thy seed (Deuteronomy 30:19)

New Diagnosis

Another member of the blogosphere has just been diagnosed with cancer.  Dermatofibrosarcoma, to be exact, and she has three little girls, ages 4, 8 months, and 8 months.  Brandi blogs at Ramblings of a Tired Mama and twitters as @brandi_b.  If you see her about the internets, please say hi.

It’s been four months

Tomorrow it will be four months since my last oncology doctors appointment. I am always very nervous before my appointment. I worry about every ache and pain I have, wondering if my cancer has come back, wondering if I will have the privilege of living a cancer free life.

Because my cancer was an early stage IIA, I do not get scans and blood tests, which I guess is a good thing. It is hard though to sit and wait and wonder if or when it will come back. I had triple negative breast cancer.

It is now commonly understood that breast cancer is not one form of cancer, but many different “subtypes” of cancer

These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.

Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple negative breast cancer.” On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.

 

You can find out more information about triple negative breast cancer HERE on the triple Negative Breast Cancer Foundation site.

Cross posted on Spruce Hill