Mothers Living with Cancer

Baruch Dayan HaEmet - Blessed is the True Judge.

2010-10-29T10:42:00.000-07:00

My heart is broken.

We have lost our friend, our cheerleader, our advocate.

**********

Baruch Dayan HaEmet - Blessed is the True Judge.

This is the blessing said upon hearing the news of someone's death.

About 11:10 AM this morning (Friday), RivkA passed away.

Funeral plans are in the process, and we'll post them as soon as we know.

May RivkA's family be comforted among the mourners of Zion and Jerusalem.

Please daven (or send happy thoughts) for the memory of RivkA bat Teirtzel.

With love and optimism,RivkA's family

Please leave a message for RivkA's grieving family and friends on her blog.

An Update from RivkA

2010-10-25T09:01:00.000-07:00

Yea! RivkA must be feeling better and the hallucinating must be gone,

if she is up for company. Momma Mindy

***********************

A post should be up here later today, as dictated by RivkA.

Important: As opposed to yesterday (Sunday) -- today friends are welcome to visit RivkA, for short visits.

Also, please be understanding that you may have to wait a bit to see her (depending on the number of people in her room).

Please understand that family conversations with RivkA will take priority over visitors.

RivkA’s looking forward to seeing you!

And she specifically told me last night, "tell people to check the blog for updates."

On behalf of RivkA,

--Jameel

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

With love and optimism,RivkA

Death Be Not Proud

2010-10-24T05:00:00.000-07:00

Posted originally by RivkA

Saturday, October 24, 2009

While we are waiting and praying,

longing to hear good news,

I wanted to repost a blog from a year ago.

**********************************

You know, I am good. I mean, I have cancer and everything, but I am good.

Mostly, I feel good, and I do things, and I even work a bit.

Most of the time, I do not feel that cancer defines me.

But it does.

I am unquestionably in the cancer world.

Even taking chemo in pills (at home), I still have to go to the hospital several times a month -- for doctor's visits and blood tests (every 3 weeks) and my bone treatments (once a month).

But that is not all. No, no, that is not all.

I also have to go to the hospital for regular CTs, MRIs, bone scans, echocardiograms, ultrasounds, and whatever other tests or procedures are deemed necessary by my team of medical caregivers.

Everywhere I go, I meet other cancer patients.

Over time, many of the cancer patients get better and "disappear" back to their "old life," the life without cancer.

But not everybody.

Some people, like me, are not going to get better. We meet regularly, week by week, month by month. We get to know each other. We get connected.

Many are like me. They are good. They are living with their cancer, and they are really living. Struggling, like me, but living. Even, I would say, living a good life.

But not everybody. Not all the time.

Sometimes people disappear and I do not know why. Have they simply switched treatment days or....? I am afraid to ask. Afraid to know.

It is hard. Hard to keep hearing about people dying of cancer.

Hard to keep my head buried in the sand, denying the threat of death, when death is all around me.

When I was first diagnosed, I stumbled onto the devastating statistics: five years after diagnosis, only 20% of women diagnosed with stage 4 breast cancer are still alive.

I desperately needed to find other young women who were living with cancer for more than 10 years, to know they existed, to know it was possible, to believe that I could be one of them.

It was surprised (though I should not have been) that it was not easy to find these women.

I contacted Sharsheret, a support organization connecting young Jewish American women with breast cancer, who connected me with an amazing woman. Though extremely private about her cancer, she generously shared details of her challenges and accomplishments. She was still working, full time, as a professor in a university! She inspired me, and gave me hope. I spoke with her several times, until I found more local support via Beit Natan.

I just found out that, a year ago, she passed away suddenly, leaving behind 8 children. She battled cancer for around 10 years.

Her sudden death shocked those around her. But not me.

I have already learned: cancer is devious.

A cancer patient can seem fine one day, and the next day is critically ill. The situation can revert back to being stable or the patient can be dead within a few weeks. There is no way to know.

We never know.

Every death is devastating. Another reminder that living with cancer is uncertain.

Everything can change in an instant.

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

With love and optimism,

RivkA

footnote: Death Be Not Proud, by John Donne (Link includes full poem and Wikipedia article)

RivkA's Message - Coping With Adversity

2010-10-20T21:09:00.000-07:00

RivkA, from Coffee and Chemo,

has been receiving more radiation and is currently hospitalized.

On her October 6 blog, she lists her symptoms.

Some of you can relate to her misery.

1.Lip still numb

2.Rt. Foot still swollen and sore

3.Still Balding from radiation.

4.Hands and Feet still red and peeling

5.Still bruise fast and heal slowly.

6.Still have severe back pain.

7.Still have hip pain and muscular pain.

8.Still have issues with constipation and stomach cramps

9.Still have low appetite and nausea

10.Still feel tired and weak.

But, you also know this about RivkA,

she loves to face whatever life brings

with love and optimism.

While in the hospital,

RivkA had a friend post a series of

videos from a motivational message she recently gave.

Her heart is still to encourage others

as they each face their own trials.

Follow the link to watch-

Coping With Adversity.

Her confidence and calmness is contagious.

May her words help you face your trials

with love and optimism.

(posted by Momma Mindy)

Tough Times

2010-09-04T13:09:00.000-07:00

(cross posted from Coffee and Chemo)
------------------------------------------------------

Summer is over, and I have been having a tough time.

Thank God, I had the strength to do things with my kids. We all really had a great summer.

That said, I spent most of my time in bed.

I am still trying to find the right balance of pain meds. This Thursday, I consulted with the pain specialist at my hospital and he said I should up the dose of my pain patch by 50%. I will try it, starting tomorrow, when I switch the patch.

Meanwhile, I am so tired, I just want to sleep all day long. I read a bit here and there, and then I am ready to go back to sleep.

The cancer makes me tired. The chemo makes me tired. The pain makes me tired. The pain meds make me tired. My kids make me tired. Doing everything makes me tired. Doing anything makes me tired.

Complain, complain, complain.....

Choices

2010-07-23T15:06:00.000-07:00

We all face certain choices every day. Some are easy – paper or plastic, soup or salad – some are difficult – should we have another child or not? Being diagnosed with cancer gives one another entire set of choices; ones that have not been given any thought before the occurrence. These include chemo or not, radiation or not, and others. My choices were, lumpectomy, single mastectomy or bilateral mastectomy, and, reconstruction or not? I chose bilateral mastectomy, but I also chose to be tested for the BRCA gene since the history is so strong in our family. When the test came back positive, I knew I had made the right choice.

The choice for chemo was another that was not so difficult. One wants to do what they can to insure against recurrence. The choice for radiation was not so easy. By the time I was ready for that stage, I had developed a painful condition involving a nerve that had gone haywire in my armpit. Radiation has a reputation for doing the same type of damage that I was already experiencing. It was a more difficult choice. In the end, I chose not to have it, partly because of all the complications involved and partly because of the difficulties with my insurance company.

After treatment, there are still more choices. For those of us with hormone linked cancer, there are several different hormone therapies available. This was a choice that, initially, I thought was easy, but since has become difficult. The year prior to my cancer diagnosis, I had a stroke. I was extremely fortunate that the blood clot somehow was redirected into my eye, instead of my brain. I had a small blind spot for a short amount of time, but there were no long term disabilities. Since the hormone therapy drug, Tamoxifen, has been linked to increased risk of stroke, we went with one of the other choices. After taking Arimidex for about a month, I had a bad reaction to it. Very bad. I was hospitalized. In the psych ward.

It took a while to get at all figured out, but now I was faced with a new choice. Hormone therapy or not? Tamoxifen or not? Cancer or stroke? Which one was I willing to take a chance on? I din’t like this choice at all. I chose Tamoxifen, accompanied by Aspirin and said my prayers. So far so good.

Now I’m faced with another choice. Since my last surgery, I have been feeling increased amounts of pain in my shoulder area. They think it’s a compressed nerve, but they don’t know where it’s being pressed or what is doing the pressing. The pain goes all the way from my ear to the outer part of my shoulder, into my chest and partway on to my back. It’s a large area and it’s a severe pain. At first they started me on some medication that is commonly used for nerve pain, but my reaction was severe and similar to the one with Arimidex. It seems that I cannot tolerate drugs of that class at all. So my choice is live with the pain or live with the possibility of another bad reaction. I don’t like these choices at all. I don’t know what to do or who to turn to. I’d like a different choice.

It's That Time Again

2010-07-14T21:21:00.000-07:00

(cross posted from Momma Mindy's Moments)

It's that time again.

I had my six month routine blood work

to find out the status of the cancer

that has staked a claim on my body

with squatter's rights.

In a few weeks, I will have a sonogram.

In January, cancer was discovered for the third time,

but my body didn't absorb radioactive iodine,

so it couldn't be used as a treatment.

It's too soon for another neck surgery.

So I wait,

watch

and wonder

if they will grow or spread.

I always feel a little apprehensive,

so I commit my concerns to the Lord in prayer,

and try not to take it back out of His hands with worry.

But, I always know,

that little band-aid on my arm,

could be the beginning of another life change for me.

As I was leaving, my endocrinologist cheered me on,

as she is good at doing,

by complimenting

"You're such a brave young woman."

The good news is,

she thinks I am young.

But, the brave part,

I'm not sure about.

I appreciate her warmth and her encouragement,

but I am not brave.

I just have cancer.

People with bravery

rescue other people from drowning and car wrecks.

Brave people jump out of airplanes,

climb Mount Everest,

live in the jungles as a missionary,

and walk on the moon.

I am not brave by character,

my situation forces bravery

because the only alternative

to living with cancer,

if you can't be cured,
is dying with it.

So, if that is all it takes to be brave,

I hope she calls me brave for

many,

many years.

I would like to someday be a

"brave, old woman."

So, my heart and mind are swirling

with prayers and scenarios,

as I consider what the future might hold,

because,

it's that time again.

Two years later

2010-07-12T15:31:00.000-07:00

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.

Upping the Ante -- Moving On To Stronger Pain Meds (Medical Update)

2010-07-08T23:04:00.000-07:00

(cross posted from Coffee and Chemo)
----------------------------------------------------------

Today, I began treatment with Herceptin again. Since I have not received Herceptin in a long time, I needed to receive a "loading" dose. Beforehand, I agreed to take hydrocortisone, to reduce the chances of an adverse reaction. I did not really want to receive more steroids, but I also did not want to have to stop treatment in the middle. Thankfully, I did not have an adverse reaction this time.

Also today, thanks to Moshe's gentle persistance, I chose to switch my method of pain management. I got a patch which releases pain medication on a steady basis, over the course of three days. I am starting with the lowest dose patch, because I do not want to be all woozy. I had to upgrade to something a bit stronger, becaue my previous regimen no longer kept the pain at bay. I am hoping that this low dose is enough to do the trick. One of the nurses warned me that I might experience some wooziness initially, but encouraged me to keep the patch on for several days, to give my body time to adjust and get over the wooziness.

So far, I am not feeling particularly woozy. I still have some mild pain, but it really is mild. We will see how I am feeling tomorrow.

My mom kept me company at the hospital today, which was really nice. We ended up being at the hospital for a really long time (I arrived at 9:00 am and we did not get out until 4:30 pm).

I would have liked to go home and rest, but God had other plans for me. My son, who got himself a job working as a junior counselor this summer, had a field trip with his camp today. He called me as soon as he learned that they would not be getting back in time for him to catch the bus to Tekoa for his horseback riding group. I offered to take him by car today as well (I drove him and one of his friends yesterday, for their first lesson, so I could see the stables, meet the owner, and provide the boys with some sort of orientation so they would be able to come and go on their own).

Once I was driving in anyway, I decided to hang out in Tekoa with my friend, KAA, and just drive the boys home after their horseback riding session. I did not mind the wait, but I needed ice cream. KAA and I went to the Makolet and I bought myself a tub of Ben & Jerry's Chunky Monkey ice cream. Despite the hot weather (and the steroids coursing through my system), I exhibited exemplary self control and did not eat the entire tub of ice cream. I used a trick my father taught me and wrapped the left over ice cream in multiple layers of plastic bags. I used a LOT of plastic bags and the ice cream was still frozen when I got home, almost an hour later (Thanks Dad!).

Tonight, Moshe, my mom, and I, watched several episodes of The Big Bang Theory. (Thanks, LWG!) If you are a geeky type, or even just married to one, you have to watch this! You will laugh!!

Medical Update -- Doxil, Weight Loss and Herceptin

2010-06-30T23:56:00.000-07:00

(cross posted, with a bit of editing, from Coffee and Chemo)
--------------------------------------------------------------------------------------

Started Doxil on Tuesday.

We have not received approval yet, but are optimistic that our supplemental insurance will cover the treatments.

Meanwhile, a few of our many angels covered the cost of today's treatment.

So we wrote a check to the hospital and I received my first treatment.

At one point, I felt a tightness in my chest and midsection. The nurse slowed down the pace of the IV. The pain lessened, though I still felt a tightness in my chest, in the area of my sternum.

The pressure did not increase when the nurse raised the rate again, but I still feel the tightness in my chest now (almost 7 hours later).

My next dose of Doxil is in a month.

My oncologist advised me not to expect to feel a difference in pain until then. I hope he is wrong.

Lately, I have had to take half a Percocet at night, in order to alleviate the pain enough for me to fall asleep. I wake up in the morning, earlier than I want, from pain. I do not want to take a whole pill, because I do not want to be a zombie in the morning! I am back to taking pain killers (2 Optalgin & 2 Algolysin) as soon as I get up, and every four hours thereafter.

My appetite has not yet returned fully. I only have a few more kilos left to lose (4.7 to be exact). When I get down to 70 kilos, I will have to do something to make sure that I do not lose too much weight. I always said: If I have to eat a high calorie diet, I will just eat ice cream all day. I might need to stock up soon....

I also need to do some sort of exercise. I know I do not move enough during the day. I lost all this weight, yet I still feel like I have to drag myself to go anywhere.

Good news for today: My health fund approved coverage of Herceptin!

Please pray, or send happy, healing thoughts, for RivkA bat (daughter of) Teirtzel.

With love and optimism,
RivkA

Mad

2010-06-05T16:31:00.000-07:00

(Cross posted, and edited, from Coffee and Chemo)
-------------------------------------------------------------------------

On Friday, almost out of nowhere, I got really angry at my kids and started snapping at them.

Moshe, my dear husband, gently questioned me, "Why are you yelling at the kids?"

All I could answer was, "I am mad."

I sat sulking for a few moments.

Then, I pondered Moshe's query. "Why am I so mad?"

I could not avoid the obvious explanation that I felt displaced anger.

If I am being completely honest, I have to admit that I am mad at God.

I am mad that He gave me cancer. I am mad that He made things worse (even though things will get better again, BE"H). I am mad that He is making me deal with cancer, now, before my daughter's Bat Mitzvah (coming of age), when I have lots of other things to worry about.... I am mad.

I trust God. I have not lost faith. But I am mad at God.

Once I realized where my anger came from, I had to stop snapping at my kids. Fair is fair; if I am mad at God and I want to yell, I should yell at God. But I did not want to yell at God.

Instead, very politely, I explained to God just why I was so mad at Him.

I allowed myself to feel angry.

It is OK to get mad at God. We do not have to like everything God does or agree with everything in His plan.

I accept that God has His reasons.

I just don't like them, whatever they are.

I do not want to have cancer.

I want God to make the cancer go away!

The Battle goes on

2010-05-29T11:15:00.000-07:00

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.

Not Scarred by the Scar

2010-05-16T23:08:00.000-07:00

(These events occurred after my second surgery for papillary thyroid carcinoma in April 2009.)

A few weeks before my surgery, my 13-year-old son, Jon, was a little more excited about the upcoming event than me.

He enthusiastically commented, "Yea, cool, mom, so are you nervous? Like they're going to go in there and slash you open and look for the cancer!"

I bit my tongue, for about five seconds, then calmly informed Jon that I was his mom, I loved him and I didn't take offense, but warned him against speaking that way to any other cancer/surgery patients. I'm not sure if he got it or not.

My husband, Scott, was a little more dramatic when I first removed the cool white foam neck guard and dared look at the 6 1/2 inch scar, that extended more than half way around my neck and up to my right ear.

"Wow, you look like you got ripped open with a chain-saw!"

He did have a clever solution later, when we discussed the near-certain probability of future surgeries. "Hey, they should have just put in a zipper, so instead of another surgery, we could just zip it open, take out the cancer and zip it back shut."

Why didn't my doctor think of that?

Another comment came on Sunday morning during coffee break at church. My always-laughing friend, Betty, admired my scar and said, "They really sliced you open this time!"

It really was fair game. When she came to church with a band-aid on her nose covering the spot where they removed skin cancer I glibly asked her if she cut herself shaving.

I guess we're even.

After my 6-year old daughter, Rebekah, got used to the scar, she had news for me.

"You know what it looks like Mom? Let me show you!"

She dug around in the scissors drawer until she came back with this pair and held them up triumphantly. She asked me if the doctor used scissors to open up my neck. We must not have satisfied her curiosity, because a few days later she questioned us further.

"Did they use a plastic knife or a sharp knife?

I needed clarification. "Do you mean when they cut me open for surgery?"

"Yes."

Daddy decided to add his expert commentary. "They used a sharp knife."

Beka, "Oh, a sharp plastic knife?"

Mom, "No, a sharp metal knife. It is called a scalpel. It's sharp so it doesn't hurt. They use it once and throw it away."

"Oh."

I have been thankful that we have been able to communicate about something that is horrible and scary - cancer. Teasing and joking are acceptable methods of dealing with stress, and I am thankful my kids and husband felt comfortable enough to tease me. That is normal for us. Normal feels good.

The scar doesn't bother me. I don't cover it with a scarf, I don't cover it with makeup. Maybe because I'm happily marrried and my husband doesn't care. Maybe because I am getting wrinkled and gray and one more flaw can't make that much of a difference. It also helps that at 5 foot 2 inches, I am shorter than most people and they are looking down on me and don't really see my neck.

I also look at my scar as a symbol of overcoming. The Lord has been my strength and my song, and many prayers have padded the rocky road with peace and comfort. A nurse told me to wear it proudly, because I was alive.

I loved the saying on this framed text in an antique store - not enough to buy it, just enough to photograph it.

By the way, I consider this photo spiritual foreshadowing. I saw this two weeks before I found out my cancer had returned. The Lord was preparing my heart.

Funeral Rubber Neckers

2010-05-11T13:03:00.000-07:00

Cross-posted from MyLifeLine.org 09/29/09 7:56 PM

-----------------------------------------------------------------

I purchased an additional bookshelf. This means I was able to pull many books out of storage and keep them within arms reach: books I've read, books I barely remember buying, and some I forgot that I have. In this process I came across "Before I Say Goodbye" by Ruth Picardie. I sat down last night and read it. I found myself relating so well not only to Ruth's situation, I also related to her, albeit English, sense of humor and methods of coping.

In the book, she tells her husband who is on list A and who is on List B of people who are allowed to attend her funeral. She talks about her disgust with funeral rubber neckers. We all know them. These are the ones who weren't especially close to the person who passed and they show up at the funeral hoping to be seen by the funeral attendance takers thereby earning a label of not only close [insert relationship] of the deceased, also horribly bereaved funeral attendee. It amuses me because I have told my family the same thing. I've instructed them to hire bouncers for my service to throw out people who simply do not belong there, the ones who are in it for visibility or public relations purposes.

That way no one in my family will be burdened with receiving overly dramatic condolences from people whose names they've never heard or look at each other shrugging at the wailing fatty in the corner who none of them recognize. We all know these people who show up even though the deceased barely knew them or may have even disliked them, however they take up space hoping it will help them in the ever-after.

Since I fancy myself somewhat a celebrity (yes, these delusions preceded my illness), I initially considered giving out admissions tickets; but even my closest friends would scalp those suckers in a flash if it meant being able to buy a pair of Christian Louboutins. That's why they are my friends!

What To Do?

2010-04-29T06:17:00.000-07:00

A good friend of mine is very sick. I am afraid to write just how sick she is. Writing it would make it too real.

She is focussed on her family right now. She does not have any energy for friends.

She is in the hospital; they are "trying to make her comfortable."

I want to visit, but am not sure she would welcome the visit. I will not go unless I know it is ok with her.

I wonder if I will get a chance to talk with her.

I am praying. I am hoping. But I am scared.

In the Middle of the Night.... (MRI Medical Update... Coming Soon)

2010-04-25T13:06:00.001-07:00

(cross posted from Coffee and Chemo)
-------------------------------------------------------------------

Regular MRIs of the brain is somewhat controversial, since constant radiation exposure to the brain can actually cause cancer. Unfortunately, there is no other way to monitor the cancer we already know is there. So, I go for a brain MRI every 3-4 months, since I want to know what is going on in my head. (Yes, I know, I just opened the door for all those sarcastic comments from my dear friends and family members....)

Well, due to a technical error (i.e. either the fax never went through or Hadassah lost my papers), the MRI dept. did not schedule an appointment for me for this month. I finally got through to the manager, who found me an "emergency" appointment for this past motz'ai Shabbat (Saturday night), at 11:30 pm. I explained that I am on chemo, and the hour is really late for me, but that is all there was, unless I wanted to wait another two months.... NOT. So, I took the appointment.

I planned to arrive early, but understood that if they did not take me until 11:30, I could easily be there until 1:00 in the morning. And, if there were any emergencies, I could be there even later!

When we realized that Moshe would not be able to come with me, I again tried to move the appointment, to no avail. Sunday (today) he attended a full day academic conference at Haifa University, about the Dead Sea Scrolls and the Second Temple Period. He had to leave early in the morning and he needed to go to sleep early. He felt bad about not being able to take me (he always takes me for my MRIs), but I pointed out that it did not make sense to lose a day of work and pay for a conference if he was going to sleep through the lectures! Since I had encouraged him to attend the conference, I certainly was not going to be the cause of him missing it! (For Moshe, attending these conferences is like letting a little kid loose in a candy shop... he thrives on this stuff!!)

Anyway, for all sorts of reasons, I did not get around to making alternate arrangements. Saturday night came around and I realized I only had a tentative date, who, it turned out, was available, but preferred to be my "back up," since going out that night was not really great for her.

I have lots of late-night friends. As I considered who to call, I realized that most of my fellow night-owls live outside of Jerusalem (anywhere between 20 minutes to 2 hours away), do not have cars, and would have no way of getting home afterwards.

So, I called one of my Jerusalem friends. Jackpot! She had rested on Shabbat, could stay out as late as necessary, had no plans for Sunday morning, and could pick me up and take me home! To top it off, she is GREAT COMPANY! I had so much fun hanging out with her.

But the evening had a few "hitches." I got there early enough, and was able to take care of all the paperwork with no pressure. When I went to sit down, I saw that there were no longer cushioned waiting chairs but, rather, hard, wooden chairs. I have cancer in my pelvic area and it is painful for me to sit on hard surfaces for more than a few minutes (especially now that I have less padding). I wrote a note to the head of the department.

Meanwhile, the technician gave me one of the office chairs.

When the technician finally got around to checking me in, I discovered that my appointment was listed for 12:15 -- 45 minutes LATER than what I was told on the phone!! I was furious, but there was nothing to do. The manager does not work at that hour and the technician does not have the authority to shuffle patients around. I wrote another letter (this one was not so nice).

I had brought three shirts to sew while I waited; they all needed buttons repaired or replaced. I had just finished the last shirt, when the technician said they could take me next. It was 12:00 am - midnight.

The doctor who inserted the IV needle was not the one I like, but also not the one I did not like. She was new (for me). When she inserted the needle, if hurt for just a few seconds, as she felt around for the vein, but then I felt fine (and I have no residual black and blue marks, so she really was good!). She also took seriously my concerns about the risk of popping my vein. When it was time to inject the contrast material, she made sure to inject it slowly. It did not hurt at all.

Twenty minutes later, I was done. I waited another 10 minute for the technicians to prepare a CT. The written report would be sent to my oncologist. I was free to go.

As we left, I started to feel a bit of anxiety creeping into my head. Soon, I will not be able to pretend. I will know how the tumors in my brain are responding to my current treatment. Hopefully, the news will be good. But until I read that report, I will not know.

I felt completely worn out. My friend, God bless her, was wonderfully supportive. I could have talked with her all night long. But we both needed to sleep. It was almost 2:00 am when she dropped me off at my home.

I stumbled into bed. Moshe reached for my hand.

Within moments, we both drifted off to sleep, our hands still clasped.

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

With love and optimism,
RivkA

Spreading the Word

2010-04-24T08:45:00.001-07:00

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:

How I Caused My Cancer

2010-04-20T11:42:00.000-07:00

cross-post from www.mylifeline.org June 25, 2008

****************************************

It happened again today. Someone asked my mom, "What was it exactly that Jennifer did to cause her cancer? Was it the chlorine in water?"

When I hear this question, I now understand that what is truly being said is, "Please tell me what I must do or not do to ensure I never get cancer!" So without further ado, I hereby release into the world the hidden truth. Yes my friends, you don't have to ask anymore, I am going to reveal the catastrophic error in my ways that led me down this tragic path. Premarital sex.

Look, I know that no one ever wants to have a lump that is "most likely nothing" or to hear "we just want to run a couple other tests to make sure," because we fear a diagnosis of cancer. I sure as heck never wanted it to happen to me. I certainly do not wish it on anyone else. But cancer, like most the big problems in life, is multi-factoral. No ONE or TWO things guarantee a person will or won't get it. I know lots of smokers who don't have cancer and I know athletes and vegans who do. I know people with fantastic attitudes about life and coping with illness who have died from cancer and I know a couple of real doomsayers who just keep spreading their despondency into old age.

I wish I had better news. I wish the answer could be found in a pill or in the use of water filters. Honestly. Unfortunately, today's lesson is simply this: WAIT UNTIL YOU ARE MARRIED!

Psychic or Psycho?

2010-04-14T22:14:00.000-07:00

(Cross posted from MyLifeLine.org -- original post: July 21, 2008)

------------------------------------------------------------------------------------

While in Estes Park this weekend, I consulted a psychic. There are those who equate this with devil worship however, I've done this before and it is at worst amusing. Last time I was told I would be working from home with bags of money at my feet. I am looking around and I must have spent it all at Nordstrom's.

This time I was told about my broken heart and the anger that is interfering with me finding love. I was advised to get this rage out of my system by finding a handsome lover for some angry sex. Start dating again and go to hotel bars alone was the advice I was given. I guess for those who have a sex drive, this might seem sensible. I guess to most in their thirties, sex is important and gives a sense of whole-ness. That is, unless you are a married mother and primary wage earner. My friends in this situation assure me that dental work rates higher than a romp any day.

So I had a good laugh about the advice. It is the type of simple solution Catholic Priests once gave every couple for whatever issues arose, "Have more kids!" I guess by the time the couples realized the solution was not solving anything, they were more focused on their financial woes than the other problems they had previously.

I finally asked the psychic what my future holds in terms of my health. She looked me over quizzically and I said that I had been diagnosed with cancer. She said that she could not smell death on me and that I have the situation well under control.

Clearly her powers are real and her advice sound so ... angry sex anyone?

Change in Summer Plans

2010-04-14T16:10:00.000-07:00

Since being diagnosed with cancer, I have developed what is considered a "rare" condition called CRPS, or Complex Regional Pain Syndrome. Basically it's a nerve that's gone nuts. In my case, the nerve in my armpit feels a light touch, such as clothing, but it tells my brain that the armpit is on fire. It took 4 months to get this condition diagnosed (and I'm one of the lucky ones).

This condition has been very challenging to deal with. Last year, I could only wear silk. Anything else sent my pain scale up to 8 or 9. This year I have made some progress and graduated to sueded cotton. I have closets and drawers full of clothes that I can not wear. None of them. Not at all.

This summer my cousin is getting married in Oklahoma. My husband and I are planning to take a nice leisurely drive there along route 66. We're really looking forward to it. I have been thinking about what to wear to this wedding. Usually I can wear a knit skirt and top to church functions, but those are quite plain. I have two dresses that I bought for my brother's wedding 4 years ago. They still fit! But... they're not sueded cotton or silk. I've decided that I'm going to wear one of them anyway. I'l just have to wear a lidocaine pain patch to help with the pain.

I had a routine PET scan last week to check on the progress since my diagnosis, surgery and chemo in 2008. There's some new growth on my adrenal gland. I don't know what to do. My doctor is on vacation this week. Now my mind is racing through all of the various scenarios....

I may not have to worry about a dress this summer. I may have to worry about whether I will even have hair...

Rats!

"Baldilocks"

2010-04-13T10:36:00.000-07:00

(Cross posted from Coffee and Chemo -- original post: September 10, 2009)
-----------------------------------------------------------------------------------------

Last week, one of my children (Child A), wanted me to move a little faster.

"Come on 'Baldilocks!!'" nudged Child A, spontaneously creating this new appellation.

I might have gotten annoyed, but the nickname was so funny, I burst out laughing!

I immediate asked if I could post it. This was too good not to share.

Child A only agreed if I promised not to reveal said child's identity. Done.

A few days later, I shared this story with another of my children (Child B), who also burst out laughing.

Today, Child B called out to me, "bye Baldilocks!"

Child A overheard and immediately claimed ownership of the clever phrase, "Hey, I made that up!!"

Going Bald is not Funny.... Or is it?

2010-04-12T13:40:00.000-07:00

For all of us who have lost our hair to nasty chemo, we know it can be a very traumatic and depressing experience. Does anyone have an amusing story about the process? Here's mine:

The first time I lost my hair was in April 2005. It was coming out by the handfuls and absolutely had to go. I asked my mother if she would shave the rest of it for me and she agreed. My plan was to have her do it, don my new wig (which was very similar to my hair pre-chemo), and hopefully my 4yo son would never know the difference. My 9yo daughter knew about it, but I did not think my son could handle it.

My mother and I locked ourselves in the bathroom to do the deed. She first cut my hair very short with scissors and then proceeded to shave it. My son kept coming to the door (as little ones often do when we want privacy) to say, "Why can't I come in?" We told him several times that we would be out in a few minutes. Unfortunately, I forgot that my little boy knew how to unlock the door by poking a skewer from the kitchen into a tiny hole in the center of the doorknob. He had seen me do this before when other doors had been accidentally locked.

So... here I was with a rather butchered-looking hair cut and half of my head shaved slick, shiny bald. My son freaked out and yelled, "Grandma! You can NEVER come here again!"

It took a great deal of consoling to get him over that and now, 5 years later, he doesn't even remember the incident or that I was bald before. I am hairless again at the moment, but this time both of the kids had a blast cutting and buzzing it off for me. (In fact, I think they had a little too much fun.)

We laugh now about what happened back then and remind my son, but it really wasn't too funny on that day.

Life is Good

2010-04-10T14:43:00.000-07:00

Although I wrote this about three years ago (a year before my cancer recurred and my diagnosis changed to Stage IV), I'd like to share it with you here. Much has changed since then and, yes, I eventually kicked those kids out of my bed! Chin up, ladies, and look for those sweet little moments that make you smile.

There’s a cat at my feet. That is, there is a cat between my feet. He seems to prefer that spot for some reason. Perhaps he delights in watching me twist and turn while trying not to disturb his slumber as I carefully get out of bed. At any rate, this is a morning ritual which I find strangely comforting. Just like waking up with my children beside me. My daughter, Meghan, sleeps soundly on the far side of the bed. My son, Jimmy, dreams peacefully in the middle.

Okay, I admit that one mom, two kids and a cat in the same bed sounds rather uncomfortable. Sometimes when I get jabbed with an elbow or wake up cold because they have hogged the covers I am inclined to agree. Nevertheless, this crowded “family” bed has been their preference since sometime last year after their father passed away. Bill was only 47 years old and died of a heart attack in his sleep. There was no warning… he was just suddenly gone from our lives. This unbearable grief, combined with my children’s worry that my breast cancer might someday return, eventually led to our crowded sleeping arrangement.

Breast cancer survivor. Yes, that’s me. I love that word: SURVIVOR. These past two years have certainly been something to survive, to say the least. My husband and I grew even closer as we found our way through that frightening experience. He was my rock and I miss him so very much.

I spent seven months fighting the “monster”. It was the hardest thing I’ve ever done in my life. My husband, our children, my parents, and our entire extended family were so supportive. Friends and neighbors were also there to help. I will always be eternally grateful to them all. Especially my gynecologist for her determination and willingness to look further, my wonderful surgeon for his thorough and meticulous work, my caring and skilled oncologist for developing my treatment plan, and all the physicians, nurses and staff of the St. Vincent’s Bruno Cancer Center. I truly owe them my life.

There is not a day that goes by when I don’t think about all that these people have done for me and thank heaven that I have survived in spite of the hardships I’ve endured. If there’s one thing I have learned it is that breast cancer does not have to be a death sentence. On beautiful mornings such as this I am reminded how good it is to be alive, to be healthy, and to be loved.

How could I doubt it when I open my eyes and view my little family so close. I know what you’re thinking -- it’s time for them to sleep alone. We’re working on that, as well as trying to find our way without their father, my dear husband. But for now…

There’s a cat at my feet. My children are beside me. Life is good.

Blast Off!!

2010-04-08T10:58:00.000-07:00

(cross posted, and edited, from Coffee and Chemo)

We have come, the darkness to expel

Fire and light, in our hands

Each of us, a tiny light

Together, we shine, mighty bright

(from a Hebrew folk song; my translation)

(traditionally sung on Hanukkah)

Whether it is one's focus, or just another one of life's challenges, cancer is discussed on-line in many different forums.

For me, the blogosphere best suits my needs.

When I was part of a group blog, I felt I had a powerful, virtual support group.

So, I decided to start a group blog that focuses on mothers living with cancer (as a chronic condition).

My goal: to gather at least ten bloggers to be part of our initial team.

It turned out to be a bit more challenging than I expected. But with patience, and a bit of perseverance, a new group slowly, and surely, began forming.

Our only requirement for joining the blog: introduce yourself!

After that, the sky's the limit.

As soon as the tenth blogger joined our team, we were ready to launch!

We are quite an eclectic bunch! We are religious and secular, Christians and Jews, believers and non-believers, right wingers and left wingers, private and social, funny and serious.

What do we have in common?

We are all young moms and we all have cancer that is not going to go away.

Oh, and one more thing:

We are all determined to live life to its fullest!!

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

With love and optimism,
RivkA

What I always knew

2010-03-21T12:57:00.000-07:00

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.

Making Special Memories

2010-03-20T14:57:00.000-07:00

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.

Question of the Day: children vs. cancer

2010-03-18T13:34:00.000-07:00

I am curious.

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

Cancer, It's All The Rage

2010-03-16T13:51:00.000-07:00

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.

It Was Just A Little Lump

2010-03-11T22:39:00.000-08:00

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 -

three

little

lumps.

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.

Cough cough cough cancer

2010-03-08T08:40:00.000-08:00

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.

How I Met Cancer

2010-03-07T22:46:00.000-08:00

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....

2010-03-07T14:02:00.000-08:00

(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

My Introduction from Suzanne

2010-03-03T04:38:00.000-08:00

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.......

Hana's mom in CT - intro

2010-03-02T08:06:00.000-08:00

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!

Fondly,
Cathy (CT)

Hello there, I'm Teresa

2010-03-02T01:09:00.000-08:00

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.

Introducing Momma Mindy

2010-03-01T22:17:00.000-08:00

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

waiting...

waiting....

waiting.

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

Liba, intruducing herself.

2010-03-01T10:57:00.000-08:00

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

I'm Heather

2010-02-26T14:21:00.000-08:00

Hi, all! My name is Heather, and I'm the mother of four gorgeous girls, ages 10, 8, 6 and almost 4. I'm married to my first husband, Clark, who has been a tremendous rock through this unthinkable trauma, in spite of his own ongoing grief and sorrow. He, too, has had to deal with the loss of hope for the future.

I was diagnosed in May of 2008 with stage IV breast cancer, mets to the bones. It was ER+/PR+, Her-2 +. I began a regimen of carboplatin, taxotere, herceptin and zometa, once weekly for three weeks, off one week, for about five months. I responded very well to treatment, and have been NED since my third PET/CT in October of 2008. I had a double mastectomy and oopherectomy in November 2008, opted against breast reconstruction, then did a full treatment of radiation therapy. In March of 2009, I was done with the "huge" treatments and continued the maintence of the AI, Femara, that I had started in January of 2009.

I am now approaching my 2nd anniversary of diagnosis, and just had a PET/CT on February 23rd, which confirmed my continued NED status.

I publish and edit a literary magazine for mothers that I cofounded in 2006 called get born: the uncensored voice of motherhood. I started the magazine because I struggled so much with loneliness, disillusionment and guilt as a mother that I didn't ever want another woman to go through similar circumstances alone.

I live in the gorgeous state of Colorado, in the United States, but traveled a lot as a young girl; my parents were conservative missionaries in Ecuador, South America when I was in high school, and I treasure that experience and the expansion of my world view with which it provided me.

I look forward to sharing on this forum; may our collaboration be a beacon of hope for too many of us who are learning to live in the tenuous space between life and death. Shalom.

Meet Jennie

2010-02-25T19:37:00.000-08:00

My cancerific journey began in fall of 2003 when I was diagnosed with Stage II, grade 3 (or grade 8 on the nine point scale), Invasive Ductal Carcinoma -- breast cancer. I was 32. My only child, Olivia was 2. After multiple surgeries, several rounds of the red-devil and cytoxan, I was given tamoxifen pills and pronounced NED (No Evidence of Disease).

Less than two years later, I discovered another hard lump and joined the advanced cancer club, stage III recurrent IDC. So LOTS more rounds of chemo-freakin-therapy, surgery, weeks of radiation treatments and a couple of hot-zone free PET scans; I was again declared NED.

Half a year later I called my doctor with back pain. Oh yes friends, the cancer was back with a vengeance. Scans revealed multiple tumors in my rib, femur, liver, lung, and in every vertebrae (as well as a collapsed T-12). Two days later I resumed both chemo-freakin-therapy and simultaneous radiation to my spine. Then surgery to put some glue/cement into my T-12. I've been on one flavor of chemo or another since then and will continue for the rest of my life.

My daughter is now 8 and in second grade. I have been raising her alone since her father left when I was five months pregnant. No fight, no discussion, nothing; we had seen the baby on the ultrasound the week before and I came home from work - all of his things were gone. There was some cash on the counter with the note, "for the phone bill."

I live in beautiful Colorado. I have four siblings. My daughter and I have moved in with my parents. Almost as much as my daughter and family; I love my work/all things learning, great food, red wines, European chocolates, reading, movies, traveling, and fancy shoes.

Getting To Know- Jo

2009-12-31T15:56:00.000-08:00

Hello, my name is Jolene (yes, after the songs) but I go by Jo usually and I am the almost 35 year old proud mama of three heathen kiddos. My oldest son is 18 1/2 and in college, my only girl is 15, and my youngest son is newly 7. My husband and I will have been together 10 years this coming May. Boy time goes fast!

As far as cancer goes, my oldest two children and I have a rare genetic disorder called MEN2a. Basically it causes a rare thyroid cancer (medullary), adrenal tumors/cancer called pheochromocytomas, and we're finding out a bunch of fun non-cancerous things as well.

I'm not able to get chemo or radiation for my cancer so all we can do is cut out things until we're just not able to anymore. It's a harsh reality but I always know it could be worse. I am considered incurable which is why I'm on this blog. Like RivkA and the others, I will be living with this until it either beats me (I refuse!) or they find a cure. My oldest son has also tested positive for the adrenal cancer so I will be posting about his new struggles as well. I look forward to getting to know everyone and helping others with MEN2a.

Getting to know Dianne:

2009-12-30T20:05:00.000-08:00

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.

Everything You Wanted to Know.... (about me)

2009-12-30T11:37:00.000-08:00

Shalom Uvracha!! (Peace and Good Blessings!!)

I am RivkA with a Capital A!

I'm 43 and married to my best friend (16 years). Moshe and I have three kids:
Eldest daughter, age 15
Son, age 13
Youngest daughter, age 11

I moved to Israel right after college and, for years, I worked in informal education and tour guiding. When my first child was born, I chose to be a full time, stay at home mom. I loved being home with our kids, and being their primary caregiver. When my youngest entered second grade, I finally felt ready to re-enter the paid work force. That's when I was diagnosed.....

In the summer of 2005, I was diagnosed with Stage ZERO, DCIS -- the earliest stage of this type of breast cancer, in which the cells are confined to the milk ducts and there is no risk that the cancer has spread. I knew we were lucky to discover the cancer at such an early stage. I told all my friends "I am the early detection 'poster child.'"

I had a lumpectomy and sentinel node biopsy. All 8 nodes that were removed were clear, but the margins from the lumpectomy were not. So I had a mastectomy and reconstruction (DIEP).

A year and a half later, I was done with cancer..... or so I thought.

In the summer of 2007, during a routine mammogram, an ultrasound revealed swelling in my lymph nodes. Further tests revealed that the cancer had spread to my bones, liver, and lungs. I now had a diagnosis of stage FOUR breast cancer. Everyone was in shock, including my doctors.

I jumped from being a "poster child" to being a statistical anomaly. This was not supposed to happen.

It took me a while to understand that Stage IV is incurable. For as long as I live, unless a cure is found, I will have breast cancer. I have what the doctors like to label, "chronic cancer."

Treatment is intended to halt growth/further spreading of the cancer. There is no expectation that we will be able to get rid of all the cancer in my body.

The cancer responded well to my first treatments: Herceptin and Navalbine. The tumors in my liver "disappeared" and the tumors in my lungs shrunk to the size of dried peas. The tumors in my bones were "stable."

It also took me a while to understand that "stable" is a good thing. I wanted to hear the word "gone."

After a little more than a year, the cancer started spreading again and I started taking Taxol instead of Navalbine. When the neuropathy got too bad, I switched to Taxotere.

In the summer of 2009, an MRI revealed tumors all over my brain. There were at least nine tumors, but we found them early. One was 12-13 mm, the rest were all smaller than a centimeter. I received 20 treatments of WBR (Whole Brain Radiation). The radiation worked better than anyone expected and there is only evidence remaining from one or two tumors.

My treatment was completely switched over, and I now take Tykerb and Xeloda. Both pills are taken daily, during a 3 week cycle. I take 5 Tykerb pills every morning, without exception. I also take 4 Xeloda pills in the morning and 4 at night, but these I only take for 14 days, followed by one "free" week, when I only take the Tykerb. Then I start again; there are no breaks in between cycles.

I am also in a study about the new bone drug: Denosumab. Once a month, I get a shot of this drug, to strengthen my bones and prevent breaks and fractures.

I have pain from the bone mets and take pain killers. I am lucky that relatively mild pain killers are usually enough to dull the pain.

And that, as they say, is the end of that.

When I was diagnosed with mets, I started blogging (http://coffeeandchemo.com/). Initially, my goal was just to let family and friends know what is going on, so I would not have to spend all my time talking about cancer and could talk about topics that interested me more, like parenting, philosophy, Torah, etc. I also hoped my blog would provide support to other families living with cancer.

As my blog developed, I realized it provided support and inspiration for a wide range of people, from all different ages and backgrounds.

I garner strength from my ability to make good things come out of a bad situation.

I plan to live with cancer for a long time... at least long enough for them to find the cure!

WELCOME!!

2009-12-28T15:14:00.000-08:00

All women facing cancer are welcome to join this blog.

This blog will focus primarily on mothers who have advanced breast (or other) cancer.

As women, and mothers, who will be living with cancer for the rest of our lives (or until there is a cure), we form a unique community.

Living with cancer is always a challenge.

Raising kids, while living with cancer, is an even greater challenge.

Together, we can share our experiences, our concerns, and our support.

Together, we are strong.

Anyone interested in joining, should contact me at:
coffeeandchemo@gmail.com