An Update from RivkA

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

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

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

(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.....

In the Beginning....

(cross posted at Coffee and Chemo)

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

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

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

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

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

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

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

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

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

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

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

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

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

I did not understand.

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

What???

I was in shock.

I was not at all prepared to hear this news.

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

This was not supposed to happen.

I did not know what to do.

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

I called Moshe.  Then I started to cry.

We spoke for a long time.

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

I drove home in a stupor.

I was still stunned.

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

I was not supposed to get cancer.

This could not be happening to me.



You might also be interested in this related post:Diagnosis

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

With love and optimism,
RivkA

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

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!