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.

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

(cross posted from Coffee and Chemo)
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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

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

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!

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!

"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!!"

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.

Life is Good

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!!

(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