Friday, October 29, 2010

Baruch Dayan HaEmet - Blessed is the True Judge.

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.

Monday, October 25, 2010

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





Sunday, October 24, 2010

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)

Wednesday, October 20, 2010

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-


Her confidence and calmness is contagious.
May her words help you face your trials
with love and optimism.

(posted by Momma Mindy)

Saturday, September 4, 2010

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.....

Friday, July 23, 2010

Choices

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.

Wednesday, July 14, 2010

It's That Time Again

(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,
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.

Monday, July 12, 2010

Two years later

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


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


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


Sorry for whining. Pray as you see fit.

Thursday, July 8, 2010

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

(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!!

Wednesday, June 30, 2010

Medical Update -- Doxil, Weight Loss and Herceptin

(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

Saturday, June 5, 2010

Mad

(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!

Saturday, May 29, 2010

The Battle goes on

Update from Dianne's husband Pat

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

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

"Am I crazy?" she asked me.

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

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

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

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

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

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

Sunday, May 16, 2010

Not Scarred by the Scar

(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.

Tuesday, May 11, 2010

Funeral Rubber Neckers

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!

Thursday, April 29, 2010

What To Do?

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.

Sunday, April 25, 2010

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

(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

Saturday, April 24, 2010

Spreading the Word


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

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

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

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

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

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

Tuesday, April 20, 2010

How I Caused My Cancer

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


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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!

Wednesday, April 14, 2010

Psychic or Psycho?

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

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!

Tuesday, April 13, 2010

"Baldilocks"

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

Monday, April 12, 2010

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

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.