Sunday, March 21, 2010

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 1st. 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.

Saturday, March 20, 2010

Making Special Memories

Recently my 9yo son asked me if we could build a fire and roast marshmallows. It was really cold out, and I was just beginning to get some energy back and my legs to stop feeling like jello since chemo the week before. I thought (sigh) can't we just play cards or something? But I said, "We'll see. Maybe tomorrow." The look on his face said it all... sure, whatever Mom. I've been sick on and off since he was 4 and I'm sure he was thinking it would never happen.

The next day he asked me again and I said, "How about Friday night?" He said, "You promise?" And I said "Yes", although I was really dreading it. I could tell he doubted my sincerity.

When he got off the school bus on Friday and came in the door I said, "You ready to gather some wood?" He looked shocked, jumped up and down, and smiled from ear-to-ear.

That night we had a blast! We built a little campfire, roasted marshmallows, snuggled under a blanket, and talked for a long while. It was so nice and when we were done he hugged me and said, "Thanks, Mom".

I'm so glad I felt better that day and was able to give him that memory.

Thursday, March 18, 2010

Question of the Day: children vs. cancer

I am curious. 

What do you find more challenging:  living with cancer or raising children?

Tuesday, March 16, 2010

Cancer, It's All The Rage

Had I been in a high risk group, overweight, smoker, poor diet, sedentary, childless, not nursed, or done something that I could point to as 'causing' my cancer; perhaps the diagnosis and seriousness of my illness wouldn't have been such an earth-shattering blow.  Perhaps.  Those first weeks and months; I cried every day in the shower.  Tears of rage and betrayal even more than the tears of self-pity.  How could this have happened to me?  Why would the body I cared for betray me?  A horrible mistake must have been made!  Wasn't my life difficult enough already?  And the way others looked at me; talked or stopped talking to me.  Oh, and the rumors at work that I was on life support or hiding a second pregnancy.  As if the illness wasn't hard enough; I had to learn a complete set of interpersonal skills to manage the reactions/questions/fears/ignorance of nearly every person in my life!

I admit, all of it pissed me off.  From the "Is it contagious?" or "Did you give it to your daughter while nursing?" kinds of questions to the "God is punishing your sins" and "Think of it as a gift" comments were all bad enough.  Then after I was diagnosed as stage IV (terminal), I was accused of faking the whole thing.  Seriously.  I got cancer and it gave others a lobotomy. 

So how did I manage to stay sane and keep a sense of humor?  I found others like me.  Young people with cancer.  Moms, single women, single men, married people with small children - all people in the prime of their lives who had also found themselves living with cancer.  Walking into a room with others who were in a similar boat allowed me to drop the defenses and breathe deeply for the first time since I was given the news.  I have met extraordinary people!  Some of whom have since passed away from cancer, those who are fortunate to be NED (No Evidence of Disease) and the rest of us who continue the non-stop treatments of every type and flavor.  Eventually, I stopped crying about it.  While I am no where near ready to give up, it's not about raging against the dying of the light.  It is about leaving a legacy that is created by every day that passes and by every moment I continue to live. 

Thursday, March 11, 2010

It Was Just A Little Lump

My husband and I had just moved from the Midwest to the Pacific Northwest with our six kids. In the midst of all the chaos my oldest daughter began suffering with daily headaches and I was plagued with a neck ache. It hurt to sleep, it hurt to stand, it hurt to sit with this nagging pain. We found a chiropractor in the new neighborhood and began going several times a week for adjustments.

In October 2004, after one of the treatments, I was massaging my relieved neck when I found it.

It was just a little lump.

Just a tiny little lump on the upper right side of my neck.

I showed my husband and we began the daily task of feeling the lump. It grew over time.

I found a primary care physician. She felt the lump and called for a sonogram.They found a second lump on the thyroid. My journey had officially begun.

At the beginning of December I had a neck CT, which led to a fine-needle aspiration biopsy in January.  It came back negative. Doubtful, my doctor sent me to an Endocrinologist and an Ear, Nose and Throat doctor (ENT). She didn't want me to give up. She only said, "I'm just not comfortable. There are two lumps for a reason."

The first ENT I visited blew me off after a quick check to my neck. She said she couldn’t even find the lump. She suggested coming back every six months.

When my Endocrinologist repeated this to me I was a bit annoyed.

"Even my husband can find it! He checks it every day to see if it has grown, or if it is throbbing."

Sarcastically he said, "Oh, is your husband a doctor?"

"No, and that is exactly my point. If he isn't a doctor and he can find it, she should be able to."

I found a new ENT, he was able to find the lump.  Each step took so long because it was hard to get in as a new patient to so many different doctors. Sometimes I had to wait 6-8 weeks just for the next appointment.

By the time my Endocrinologist took me seriously and did his own biopsy on my neck it was May.

On the way to find the results of the second biopsy,  I pulled out of my driveway and was immediately filled with the Presence of the Lord.  It was a surreal peace and comfort, the kind you read about in books.  Bible verses I had previously memorized began flooding my mind, "I am with thee and will keep thee in all places, sayeth the Lord,"  and "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

At that moment, I knew I had cancer. I also knew that I would not be on the journey alone. When I had trusted Christ as my Saviour at 18, I had committed to Him my entire heart, mind, soul and body. I was not about to rescind any part of that committment despite the circumstances.

The lumps turned out to be papillary thyroid carcinoma that had metasticized.  A total thyroidectomy and a radical neck dissection were performed June 2005 in a six hour surgery.   Only 1 of the 30 lymph nodes had cancer.  The doctors thought the  100 mCi's dose of radioactive iodine in August would be the final step in my treatment.

In September I found new little lumps.  Just little tiny lumps that my fingertips discovered when doing my ritual "neck-check."  My journey wasn't over.

They watched and waited and watched and waited.  In April 2009 they went back in for another surgery for those little lumps.

In October 2009 I was declared in remission.

In January 2010 my sonogram revealed - you guessed it -




These little, less than a centimeter lumps are unwanted invaders, a cancer that cannot be conquered. The testing this time eliminated radioactive iodine as a treatment, because my body did not take in the tracer dose given.  Surgery is not an encouraged at this time because you can only have so many neck surgeries in a lifetime, and I have already used two of my options.

So, we watch, we wait and we hope and pray they don't grow.

Because they're just little lumps of papillary thyroid carcinoma.

Monday, March 8, 2010

Cough cough cough cancer

There aren't many people who can attribute their cancer diagnosis to a bad bought of bronchitis. Coughing doesn't cause cancer, but it was the catalyst for my visit to the doctor. That doctor found my cancer.

February of 2009 I had bronchitis that just wouldn't go away. I was on breathing treatments, cough medications, antibiotics, pain medications, and still miserable. It burned to breathe and my doctor had me coming back frequently because the bronchitis wasn't responding to treatment.

One time, after about a month of being sick, I was sitting on the examining table and my doctor was standing and listening to me breathing and she got a funny look on her face. She asked me if I had thyroid issues and I said "no" and she proceeded to ask me to swallow, over and over again as she watched and felt my neck.

The mass was quite visible (my primary tumor was 4.5cm/almost 2" and there were multiple tumors). My doctor was concerned.

Within two days of my doctor's discovery, my bronchitis was much better. I had my first neck ultrasound within a week, followed by another ultrasound and biopsy. Confirmation came a couple of weeks later.

The news did not come as a shock. The ultrasound pictures had been enough for the radiologists to be quite confidant of what they were seeing and the reassurance they gave was "if you have to have cancer, thyroid cancer is one of the better ones to have."

My mother in law had had thyroid cancer, which hadn't spread and was resolved very easily, so I was inclined to believe the doctors reassurance. It wasn't until later in the journey that I found out how far my cancer had spread and that things would not be so quick and easy for me.

By the time my biopsy results came in I had already figure out, by comparing my ultrasound pictures to pictures I found on the internet, what type of thyroid cancer I had. The pattern of calcification was classic. The pictures were clear and the biopsy was just a formality.

There is a Hebrew term hashgacha pratis which loosely translated means Divine Providence. It refers to God's supervision and governance of every action and aspect of the world in which we live.

The hashgacha pratis throughout my journey has been clear and has given me a lot of strength. Not only was my diagnosis divinely orchestrated but my support system and coping skills were put into place before my diagnosis was even made.

Sunday, March 7, 2010

How I Met Cancer

I was determined to be a great mom.  When my daughter was born, I was overwhelmed by the feelings of both love and total responsibility for her life, safety, and well-being.  Between changings and feedings when I should have slept, I did research.  One bit of research was on breastfeeding.  Specifically, how to ensure my daughter had the maximal benefits from nursing.  While Americans frown upon anything inconvenient that does not involve generating a return; I felt the WHO (World Health Organization) had the most complete data and evidence for nourishing a child with breast milk for at least two years.  In addition, this time frame would also offer the greatest possible benefit in protection against developing breast cancer.  So I rented a breast pump from the hospital and pumped 2-3 times per day at the office because even though I had failed to provide my daughter with a father, I thought the least I could do was ensure a hearty immune system.

The first year was fairly easy in terms of pumping; the second year gradually became more difficult and by the time my daughter reached her second birthday, my milk had dried up and the breast pump was returned to the hospital.  Having been large breasted before nursing, after Olivia was born my breast became enormous, engorged torpedoes.  They no longer felt like a part of the whole me, rather these massive milk making monsters on the front of my body.  However, once the milk factory slowed to a stop, I became very aware of dense disc of tissue in one breast that was unaffected by the absence of milk.  It wasn't like the dense tissue that had been there pre-baby.  It was off-center, very hard and sometimes ached.  I scheduled an appointment with my general doctor for the following week.

I scheduled the appointment for my lunch hour since I wanted to disrupt my workday as little as possible.  When the doctor examined me she said it was most likely nothing but certainly was unusual so she sent me downstairs for a mammogram.  The department was having a slow day and worked me in right away.  After the mammogram, I went to the dressing room to put my shirt back on.  The nurse interrupted me and asked that I stay in the gown that the radiologist wanted to see an ultrasound of my lump as long as I was there. 

She walked me down the hall where I was given an ultrasound by a technician, and the radiologist came in to observe.  I went to get dressed and was told to go back upstairs to see my doctor.  When I saw my doctor's face, I felt genuine fear for the first time since discovering the lump.  She told me the surgeon next door was available to do a biopsy so why not just walk over and get one -- as long as I was there.  So I called my boss and left a message that I had come to the doctor's office and that they wanted to run some tests so I probably wouldn't be back to the office until late in the afternoon.

A short wait later, an assistant escorted me to the surgeon's office.  There, the surgeon was looking at my films.  He looked up and after introducing himself he told me, "This is definitely a fibroadenoma.  See the smooth edges?  Tumors have finger-like edges.  And you told your doctor that it hurts sometimes?  Tumors aren't painful.  Yes, this is definitely not cancer.  But I will do the biopsy to satisfy the other doctors."  While what he said was very reassuring, since being a small child I have had a strong dislike of needles.  The doctor said that a biopsy is a routine procedure that he'd do right there in the office (NO SEDATIVE?!)  He would use a local anesthetic and send me home ship shape in no time.  So I asked if there was a nurse who could hold my hand during the biopsy.  He did the biopsy and allowed me to watch on the ultrasound machine.  He said he would call me the following week with results.  Since he wasn't concerned, he would send it for standard processing (as opposed to expedited).

The following week when he hadn't called by Wednesday, I called his office.  I was told he was at lunch and hadn't gotten the results yet.  Less than an hour later my phone rang.  "I'm sorry to tell you this, but you have cancer.  It is very aggressive.  If you can come in later today, we need to discuss next steps."  One week later I had a modified radical mastectomy, sentinel node biopsy (negative for cancer), and a TRAM flap reconstruction surgery.  There were multiple follow up surgeries for the complication I had including severe necrosis which resulted in a very poor reconstruction with no symmetry.  

It was during these surgeries that I finally talked to an oncologist for the first time.  I was fortunate to find an exceptionally talented doctor with whom I "clicked".  She started me on dose-dense Epirubicin/Cytoxan chemotherapy only days after one of my reconstructive surgeries.  The first treatment was horrible, caused additional complications with my reconstruction, and was the beginning of the end of feeling healthy, energetic, and young.  That was the day when I actually started feeling "sick" and it wasn't a tenth as glamorous as it looks in the movies.

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.


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,

Wednesday, March 3, 2010

My Introduction from Suzanne

Hi all,

My name is Suzanne and I am very happy to be joining this group. I have been living with metastatic breast cancer for 5 and a half years. Mothering my 2 little ones. Grace (8) and Dominic (6) continues to be my biggest challenge.

I am 44 years old and live in CT. (Hey Cathy! We are practically neighbors!) I have been married for 18 years. My husband and I are both optometrists. We spent the first several years of our marriage working like maniacs to pay off our student loans.

When we decided to start a family, we had major issues with infertility. After several years dealing with that challenge, we finally had our beautiful daughter and a son to follow. I thought I was done with medical challenges. It was just beginning!

In 2004, I was diagnosed from the start with metastatic disease to the bone. I had dose dense chemo, mastectomy and was on hormone therapy for almost 3 years. (Thank god for lazy cancer). Last April things began to change and I developed lymph nodes in my stomach affecting my kidneys and liver mets. I have been back on chemo ever since. I started with taxol/avastin and am now on Xeloda. So far so good. Stable is my new favorite word.

I am a SAHM now and volunteer quite a bit at my kid's school, girl scouts, sing in a chorus and am vice president of the Metastatic Breast Cancer Network. Life is good. Considering.......

Tuesday, March 2, 2010

Hana's mom in CT - intro

Hi everyone, This is Cathy -- I'm 52 and was first diagnosed with Stage 1 bc in 1996, at 38. At that time I was living in NYC, ending a significant relationship and planning to become a single mother by choice. Trained as a clinical social worker, I was in private practice and working with emotionally challenged children in a day school. I was comforted by colleagues, friends and family. I met my DH in 1998, he was the proud father to two children 14/12 and we were married in 1999 and adopted Hana (9) in 2001. I was cancer free until 2005 when diagnosed with mets to the liver which responded very well to treatment. Then, 2007 mets to the brain followed by WBR, 7 doses of cyberknife and now, I am in a clinical trial in Boston (I live in New Haven, CT). The results have been remarkable with 78% reduction in the brain mets since November! Oh, I am ER/PR - and HER2 positive. Liver stable and I feel pretty good for a young mom blasted by CA.

My greatest challenge is knowing that my life will not go on forever and what about my daughter...I live a distance from my closest friends and extended family (mother is nearby and quite vital)

Thank you RivkA for starting this group. I look forward to getting to getting to know everyone!

Cathy (CT)

Hello there, I'm Teresa

My name is Teresa and I’m a 44-year old southern gal from Alabama. I have two wonderful children (Meghan, age 14; Jimmy, age 9), two beautiful cats, and two energetic mini-Australian Shepherds. I also have Stage IV breast cancer.

Originally diagnosed in February 2005 at age 39, I found the lump myself and had my first mammogram. Over the next two weeks I had a biopsy, ultrasound, lumpectomy, and subsequent mastectomy of my right breast (the tumor was larger than first thought and it had spread). At that time my cancer was graded Stage II (T2N2MO, ER+/PR+). By April I was on chemotherapy (A/C then Taxol) and a few months later I was given 28 radiation treatments. I lost all my hair and was very sick for months. Follow-up scans indicated the cancer was gone. I began taking Tamoxifen and hoped for the best.

Our family had big plans for the next year to do things we could not during my illness. We bought a new boat and the children were really looking forward to that summer. Unfortunately, my husband passed away in May 2006 from a heart attack in his sleep. He was only 47. Just as I was beginning to feel like myself again, my life fell spectacularly apart.

I made it through all of that somehow, and the children and I struggled to get used to life without their father. Being a single Mom is difficult at times and, thankfully, two years passed during which I continued to have a clean bill of health. Then in March 2008 I began to have severe back pain. My oncologist sent me for a scan and gave me some bad news: the cancer had returned and it was in my bones. I had tumors in my spine and in one hip. This changed my diagnosis to Stage IV and I was devastated. Fourteen radiation treatments were immediately scheduled due to the location of the tumors putting me at risk for spinal cord compression. After that I began monthly bone treatments (Zometa). My next scan was clean and I went back into remission.

Since then I have had two more recurrences and undergone chemotherapy both times (Ixempra, Doxil). I am currently receiving Abraxane due to very small tumors in two lymph nodes, my spine, one hip, and my liver. Two weeks after the first treatment, my hair began to fall out. Sadly I am bald again, but can feel the lymph node above my collar bone shrinking more and more. I am looking forward to my next scan and praying for a good report.

My life has been full of ups and downs these past five years. Sometimes I’m not quite sure how I made it through. I strive to look for the good in all things and try not to focus on my cancer too much. In spite of everything, I feel the Lord has blessed me tremendously. After all I am still alive, my children are happy and healthy, and I just became engaged to a wonderful, loving man (something I never expected in my wildest dreams considering my health issues). I will never give up hoping for a cure; but in the meantime, life will continue to go on and I plan to live it to the fullest while I’m here.

Monday, March 1, 2010

Introducing Momma Mindy

By the time I clearly understood where a thyroid was located and what it was for, I no longer had one.

It was cut out and incinerated in the hospital's garbage in the hopes of eliminating  papillary thyroid carcinoma. The lump that had metastasized to the right side of my neck, along with 30 lymph nodes, were removed and tested. Three months later I was isolated with a treatment of 100mCi's of radioactive iodine. This was followed by six months of a very high dose of artificial thyroid hormone, levoxyl, a period which is  nicknamed Hyper-Hell for all the right reasons.

I was told a few things from my first endocrinologist.

     1. I only had a 5% chance of dying from thyroid cancer.
     2. I would never be considered cured or in remission

I also was told -

     "If you want to ask anymore questions, you'll have to make another appointment."
     "You asked me that last time."

Not only was I thrust into a new life as a Mother Living with Cancer, I was thrust into that life of learning to be my own advocate concerning my health care, including searching for doctors until I found the team I wanted to accompany me on the journey I didn't plan to take.

At the time of my initial diagnosis, I was 40, had just moved with my husband from a lifetime of living in the Midwest to the Pacific Northwest.  We were still in culture shock. We had moved away from all our friends and family members.  The oldest of our six children was in her senior year of high school and our youngest was only two.

Four months after moving, I  found a little lump on my neck.  My new primary care physician ordered a sonogram.  It revealed another lump on my thyroid.  It took almost eight months of testing, waiting, testing, waiting, for the doctors to conclude it was cancer.

On the way to find the results of the second biopsy, I pulled out of the driveway and was immediately filled with the Presence of the Lord.  It was a surreal peace and comfort, the kind you read about in books.  Bible verses began flooding my mind, "I am with thee and will keep thee in all places, sayeth the Lord,"  and "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

At that moment, I knew I had cancer. I also knew that I would not be on the journey alone.

After the first treatment we continued life by buying a house,  watching three kids graduate, continuing to homeschool the younger kids and welcoming a son-in-law and two grandkids into the family.

The four years were filled with continuous testing, watching suspicious lumps grow on my neck and blood work.  There was never a peace, always that feeling that something was lurking.

By early spring 2009, we knew IT was back.  In April  I had my second surgery to remove two more cancerous nodes. I suffered much nerve damage, but no further treatment was given.   My third, and hopefully final, endocrinologist, carefully monitored my body, giving me the wonderful word "REMISSION" October 29th, 2009. 

My blood work and sonogram January 29, 2010, brought me back to Cancerland after a too-short vacation.

In three months I managed to grow three new cancerous nodes.  Because the tumors are so tiny and so aggressive, my team of doctors is still trying to decide the best course of treatment.

My past few weeks have been filled with the song and dance chronically ill people know, sitting in ugly waiting rooms, listening to doctors, taking tests, hoping the next person who draws your blood won't leave such carnage and




But, while I'm waiting, I'm praying.  I have not walked the past six years alone.

Liba, intruducing herself.

I am a busy mommy to some adorable but medically involved children, dealing with everything that came along with advanced thyroid cancer. I thought my plate was full before. Then I found out that my plate was really a serving bowl.

I am not sure how I fit in here. I have cancer, but the kind that should be curable. It should never have spread like it did and it should all be long gone. None the less I am still living with it and it has changed my life. The government considers me permanently disabled and the cancer is still here.

I have papillary thyroid cancer.

My original biopsy was a year ago last Thursday and confirmation that the tumor that they found on ultrasound is cancerous came today.

In April of 2009 I had a 1o hour surgery to remove my thyroid, more than 90 lymph nodes (45 cancerous), and three tumors outside of my lymph nodes and thyroid (all of which were wrapped around important nerves in my neck). There was cancerous tissue surrounding my thyroid and all of the way to my trachea.

In August I had a radioactive iodine treatment. It is targeted oral radiation, with the same radioactive isotope that caused the health issues after Chernobyl, that is supposed to get rid of all of the remaining thyroid cells and thyroid cancer. Because of the large dose I had 9 days of isolation, the first half in the hospital in a room no one else could enter and I could not leave, followed by some time in my cousins much airier and prettier basement guest bedroom. The radiation is supposed to kill the cancer for six to twelve months, but mine is growing instead.

My surgery left me dealing with surgically induced hypoparathyroidism. My body no longer regulates calcium so we have to do it with medication. It is a tricky balance made harder by the fact that I have Crohn's and absorption issues. Calcium too high or too low are both potentially fatal. When things are going really well I have weekly blood draws to check levels, when they are not I have daily draws and IV calcium. My hands are numb pretty much all of the time from the hypocalciemia and, since muscles use calcium, the more I do the worse it gets and the more often I need IV.

Currently I have a new 1cm mass that was found on routine ultrasound of my neck. It is in my neck behind my carotid artery, not accessible for biopsy, but my blood tests confirm that there is still cancer left, so my oncologist has recommended another surgery followed by another radioactive iodine treatment.

I live in Israel and have been married for 13 years, to a wonderful and supportive husband. We have four children, girls ages 11, 9, 5 and a 3 year old boy. My hospitalizations and isolations are particularly difficult because they leave my husband sole caregiver. My son has complex medical needs and requires a fair bit of skilled nursing care and night time monitoring. I worry about my husband and how much is on his shoulders when I am gone, but he doesn't complain.

On top of my own battle I lost my father to colon cancer when I was 16 and my brother just started radiation for parotid (salivary gland) cancer. I hate cancer