Two years later

Two years ago, a doctor, whose name I can't even remember, called to confirm the diagnosis of breast cancer. Now - I wish I couldn't remember having breast cancer. But, the reminders sometimes wake me up at night. I see them in the mirror every morning. I take them with my morning juice and cereal. I put them on as I select my wardrobe each day. I brush them out after my shower. I feel them when a friend pats me on the shoulder. I feel them flash through my body from time to time. I schedule them around my work hours. I feel them when I want to be intimate. I worry about them hurting my children. I fear they will steal my future.

I hate cancer and all it's done to my life.


Tomorrow I have an appointment with the pain clinic doctor. The pain in my shoulder started in October. I have taken two different types of medications that have not helped the pain and actually screwed up my body more. I was referred to the pain clinic in April - and tomorrow is my appointment. I'm hoping for a diagnosis. I'm hoping for a treatment that works. I'm hoping for a cure, but I'll probably just get referred to yet another doctor.


Sorry for whining. Pray as you see fit.

The Battle goes on

Update from Dianne's husband Pat

This week I was searching the web for information about life after breast cancer to better understand how I could help Dianne. I found an paper from the Journal of Clinical Oncology by Hester Hill Schnipper titled Life After Breast Cancer (and yes, this is the type of reading you do once cancer enters your life). The introduction to the paper really struck me as to what is going on in Dianne's life, and mine, at this time:

SHRUGGING OFF her mink coat, Meredith Powers settled into the comfortable chair in my office. A 40-year-old single woman, she had completed her active treatment for stage II breast cancer 3 months earlier. Through the months of surgery, chemotherapy, and radiation, she had maintained most of her normal life routines and insisted that breast cancer was a disruption that could be managed. To her astonishment, she now found herself overwhelmed with emotions and unable to function. She called her medical oncologist when she could barely get out of bed in the morning and found herself weeping uncontrollably. As she explained that she had never before felt so out of control and that she was "baffled" by her feelings, she began to cry.

"Am I crazy?" she asked me.

As we began to talk, it was clear that she was struggling with many problems that were new to her and that were directly related to her diagnosis and treatment. She was exhausted and very frustrated with her diminished level of energy. She was angry with many of her friends and worried about being a burden to her family. She was unhappy with her body and the changes due to her cancer; she hated waiting for her hair to grow and felt "fat and ugly." She worried about her performance at work and her limited options considering a career move. She wanted her old life back and was starting to understand that was impossible.

Beside not having a mink coat, and being married instead of single, much of this story describes what Dianne has been feeling since the end of active cancer treatment (December 08). The paper goes on to say:

The crisis of breast cancer does not abate with the final chemotherapy or radiation treatments. Indeed, in many ways, the real crisis is just beginning. How do you learn to live with the sword of Damocles ever dangling? How do you come to terms with the changes in your body as well as the changes in your perspective? How do you manage the changed relationships and the intense emotions that continue into the future? These are questions with which the patient will have to struggle, as life is slowly reclaimed. Recognizing that there are existential issues that must be examined by each of us in our own hearts, there are predictable problems in many other areas that can be addressed by caregivers...The challenges of survivorship are many. More than anything else, it is the searing recognition of mortality that changes everything. From this moment forward, all of life will be viewed through a double lens as we appreciate the possibilities of both a long life and a greatly abbreviated one. This dual view may actually, over time, enrich our lives. We make a conscious and willing choice, each of us living with cancer, to go on, to take and to appreciate the darkness as well as the sunlight. We hold dear the night as well as the morning.

This is how Dianne is doing. This is how we are doing. If you want to learn more about life after breast cancer, you can read the full article at:

http://jco.ascopubs.org/cgi/content/full/19/15/3581

Please continue to pray for our family, the battle is not over.

Spreading the Word

Every time I speak, write, or talk about living with Stage IV cancer, it seems I am educating an entire public. This week, I got to go on TV to discuss the cover of my Spring issue, on which I posed nude, revealing my mastectomy scars. We've received LOTS of feedback on it.

Yesterday, I spoke at length to a woman who wants to get a copy to give her daughter, who is a young preteen, perfectly healthy, but struggles with excema scars and thinks she needs to lose weight. I say, let's bring on the REAL cover girls and start to break down the belief systems of glamour and celebrity that damage our senses of self-worth so horribly.

This woman had contacted me because of my interview on a local Denver morning show, in which I talk about balancing on that tightrope wire between life and death, and how it's an untenable place. We all walk it, sometimes pretending its as vast and flat as a sandy desert, other times wobbling precariously as grief, fear, family trauma and reality conspire to knock us off into oblivion. While I'm glad we're mouthy and outspoken, it grieves me, daily, that I've been chosen for such a shitty spokesperson detail.

I struggle, also, daily, with feeling attractive or even feminine. So I got my nose pierced the other day. I'm feeling much better now.

My meditation for this day: May we be given the grace to dwell in the presence of the moment and the insight to find those things that truly bring beauty and hope. I've got an almost-family of robins outside my living room window. For today, I will enjoy the promise of life.

If you'd like to watch what I said about living with cancer, it's here:
 

What I always knew

Since I have several relatives that have had breast cancer, I have always been vigilant about checking myself and going in when things don’t seem right. This has not always been easy, because every month when I checked, I felt a “bag of marbles”. Once I felt one that seemed not to fade as the others periodically did. I called my regular doctor who ordered a mammogram. A week later I received a card in the mail that said “your mammogram shows that you do not have cancer”. I wasn’t really worried, yet that particular lump still did not fade.

After a couple more months, I called the Breast Care facility to see if I could get an appointment with them. I went in and saw a Nurse Practitioner who, upon pulling up my file, asked why I hadn’t consulted earlier. I was confused. She informed me that my mammogram had showed several areas of concern and that I should have had them checked out. After much discussion, I realized that the insurance company sends these cards out automatically and I should have asked for a copy of the report.

Then we talked about my family history and she asked if my mother, sisters or aunts had any history of breast cancer. Well I don’t have any sisters and neither does my dad, and my mom and her sister were just fine. She said not to worry since only 10% of the breast cancers are genetic. Then she did an ultrasound and said that, yes there was something there and let’s just get it out. She set me up with a surgeon for a lumpectomy.

The surgery went well and every thing came out benign. I was scheduled for checks every six months. Usually when I went in she did an ultrasound and then drained whatever cyst was bothering me at the time. After three years of this she said it was time for another mammogram. I argued with her saying that I didn’t see the point since they automatically sent out cards saying that it did not show cancer. Finally she prevailed and I went in for one. This time I received a handwritten note from her saying that everything was fine. This was April 1, 2008.

About four weeks later I found a lump in the shower that was very different than all the rest. First, it was very painful and, second, it was right behind my left nipple. I knew immediately what this was, but didn’t want to believe it. After all, I had just been in last month. I tried to ignore it but it got more and more painful. After a week of denial, I called to get another appointment. At the appointment she did an ultrasound and then said I needed to go in for a digital ultrasound. I asked why that was needed and she said it would show things more clearly. They would call to set up an appointment.

Two days later they called and asked if I could come in on June 20th. Well, that happened to be the weekend that I had signed up as a chaperone for my daughter’s trip to Colorado with her choir. We had planned for months and invested quite a bit of money into the trip. And, my daughter wouldn’t go without me. The next appointment was on July 1^st. I didn’t really want to wait that long, but I took it. In the meantime, we finished the school year, went camping (twice), started the summer session (I’m a Math teacher), and went to Colorado with the choir. All the while I knew I had a time bomb ticking away.

On July first I went in, by myself, and had the digital sonogram. Afterward, they called in a doctor who said I needed a consult. He said I needed a biopsy done and one was scheduled for the following Tuesday. When I got home I told my husband that the doctor gave me the creeps so I called back with the excuse of wanting a female doctor and was given another doctor who could see me that Tuesday also.

The next week I was volunteering at my church’s Vacation Bible School but my appointment was in the afternoon and the kids went home at 1:00. This time my mom decided to go with me. So we went and they took several core samples of the lump and a swollen lymph node. Then they wanted to take another mammogram. Again I argued, saying I had just had one and didn’t want another. They said it was necessary for the surgeon to be able to locate things. Now I knew, but was still holding out hope that it was not what I thought it was.

On Friday, right after my husband got home from work, the doctor called my house and confirmed that it was indeed cancer and said the surgeon would be calling on Monday to set up an appointment. I told my husband, and we cried together. Then we made dinner, told our two kids and went to the musical that the VBS kids had been preparing all week.

In the Beginning....

(cross posted at Coffee and Chemo)

I did not believe I would get cancer. (Never mind that my grandmother had BC (breast cancer), and that my mother had BC, twice)

My mother told me to start getting check ups (mammograms) when I was 30.  I did not want to, but she would not stop bugging me.  Eventually, I went to my GP for a referral.  I informed him that my mother and grandmother both had breast cancer. He responded with one question: "Do you have any aunts or cousins who had breast cancer?"  I answered, honestly, if a bit deceivingly, "no."   "Then you don't need to go for mammograms," he responded.  That was good enough for me.  I reported to my mom, and pushed the thought of BC and mammograms out of my mind.

A few years later, two friends of mine were diagnosed with BC.  They were my age!  Their diagnoses woke me up.  I went back to my doctor, who asked me the same question: "Do you have any aunts or cousins who had breast cancer?"  This time, I gave him a complete answer:  "I do not have any aunts or cousins; both my parents were only children, as was my grandmother."  Basically, there were no other family members who would get BC before me.  I was, so to speak, the "next in line."  In light of this "new" information, he agreed with my mom, "You should be getting regular mammograms." 

Then I asked him about this weird thing in my breast. I admitted, "I've felt it for several years."  He did a quick manual exam, and determined it was nothing to worry about. I felt he dismissed it very quickly.  A few weeks later, I went back and asked how he knew whether the thing I felt in my breast was really nothing (a question which had been nagging me since my visit).  He did another manual exam.  This time, he responded, "I want you to see the surgeon right away."  "Why now?" I questioned.  "Because it is bigger than the last time," he replied, heading out the door.  A minute later, he returned.  "You're in luck," he told me, "the surgeon you should see is in, and can see you now."  Without further ado, I found myself sitting in the surgeon's office, a little surprised at how fast things seemed to be moving.

The surgeon spoke with me for a few minutes, then did his own manual exam.  Then he gave me a referral for a mammogram, and directed me to a particular clinic, with one of the top radiologists in this field.  I got an appointment right away.  (I don't remember for sure, but I think the surgeon might even have called the clinic.)

The mammogram showed a "radial scar."  It was not a malignant tumor, but the shape indicated that it could become one in the future.  "It should be removed," I was told, matter-of-factly.

I scheduled the surgery, in the day clinic, at the medical center.  The tumor was removed.  The pathology was benign.  We were done.

After that, I went for annual mammograms and bi-annual manual exams by the surgeon.

The mammograms were especially tedious, because the visit (including the mammogram, an ultrasound, and a consultation with the radiologist) took all morning (at least 3-4 hours). 

At first, Moshe would accompany me.  Eventually, I told him there was no need.  It just wasted both our time.  These exams were routine and uneventful.... for five years.

In 2007, the radiologist noticed tiny calcifications in my milk ducts.  As part of his exam, he took a core biopsy.  A week later, his office called and told me that it is their policy not to give any results over the phone and could I please come in on Sunday afternoon.  I "knew" how long things took there, and told Moshe, who was in the middle of a "crunch" at work, that I would go on my own.  It did not occur to me that there could be any reason I would need him with me.

When I arrived, there was no one else in the waiting room.  Still, I did not feel any concern.

Then, the radiologist called me in.  He showed me the pictures from the mammogram.  He showed me the white spots that were spread throughout my milk ducts. He explained that calcifications and cancer cells often look the same.  Then, in a calm, quiet voice, he informed me that some of the white spots I was seeing were cancerous.

I did not understand.

The radiologist, quietly, and gently, continued to explain.  This is very early; most of the cells are contained in the milk ducts; there might be a small invasion into the rest of the breast tissue.... we will know more after the surgery.

What???

I was in shock.

I was not at all prepared to hear this news.

I needed to talk with Moshe, but he was not there.

This was not supposed to happen.

I did not know what to do.

Thankfully, the kind staff did know what to do.  The secretary, with whom I had a warm relationship, gently guided me to a waiting room where I could be alone, and call Moshe.

I called Moshe.  Then I started to cry.

We spoke for a long time.

When I was calm enough to drive home, I thanked the staff.  They had already called my surgeon and arranged an appointment for me for the next day.

I drove home in a stupor.

I was still stunned.

This could not be happening to me.  I did everything I was supposed to do. 

I was not supposed to get cancer.

This could not be happening to me.



You might also be interested in this related post:Diagnosis

Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Getting to know Dianne:

I’m 46 years old and have two kids, a daughter that is 18 and a son that is 17. I’ve been married to my best friend for almost 25 years. I’ve been teaching Math at the local Jr. College for 20 years and been a stay-at-home mom at the same time. I homeschooled both kids from the 6^th grade through the 11^th – it was loads of fun!

I found my breast cancer less than a month after a “clear” mammogram in 2008 (Infiltrating ductal carcinoma, stage IIB). I always knew I would get cancer because every woman in my dad’s family has died of breast or ovarian cancer. I’m hoping to break that chain.

So, after a bilateral mastectomy, an oophorectomy, eight rounds of chemo (interrupted by the development of a rare condition), Arimadex hormone therapy that landed me in the hospital after a month, another biopsy, Tamoxifen (for the next 5 years), and implant reconstruction surgery - I’m still here! It’s been a wild ride so far, but you’re welcome to join me on my journey.