Not for Me

I am doing ok, but I have to work at it... really hard.

After 6 months of deliberation, I finally decided that I would try talking to the psychologist at the hospital who works with cancer patients.  Several of my friends meet with him and have found their discussions to be helpful.

So, I figured, maybe he would have some insight or approach that I have not thought of on my own.  Also, maybe I would get a better perspective about whether my feelings are "normal." I hoped to get some "objective" feedback about whether or not I am coping as well as I think.

This past Thursday, when I checked into the oncology ward, I made an appointment for 11:30 with the pyschologist.

Then I did my stuff... blood tests, meeting with my oncologist, getting my shot, etc.  I even got a short massage.

Then I went to meet with the psychologist.  His door was closed and the substitute secretary told me to sit and wait.  So, I sat and waited....and waited....and waited....

I asked if I should knock on the door and was told not to knock.  I asked them to call him, but he did not answer the phone.

So, I waited....and waited....and waited.....

After two hours (without exaggeration), I saw a friend approach the door and knock.  I asked her why she knocked and she said she always knocks, adding "how else would he know I am here?"  The psychologist popped his head out and told her he would be another minute. 

Sure enough, less than five minutes later, he emerged from his office.

I took the opportunity to ask him if he was aware that I had been waiting for him for two hours.

I was very careful about how I phrased the question and that my tone reflected that I was just looking for "verification," lest he feel I was criticizing him (which I was not). Since we did not have a relationship yet, I wanted to be sure we did not start out on the wrong foot.

Well, I was in for a surprise.

"Did you make the appointment with me?" He asked me, not at all concerned that his tone was aggressive.

"No," I answered innocently, "I made the appointment this morning with the secretary." 

"Well then for me you do not exist," he answered curtly.

More than a little shocked, I explained that I made the appointment with the secretaries and they told me not to knock and just to wait.

"This does not concern me," He responded, "it's like you are telling me that your car stalled.  It has nothing to do with me."

I could not believe how insensitive he was.  I had sat there for two hours, waiting for him.  I gathered, from his responses, that I had not followed the correct procedure for making an appointment.  I did not know.  I was not angry about the mishap.  Mistakes happen.  I had my coffee-and-chemo-date with me (triLcat) and I enjoyed talking with her while we were waiting.  I never plan anything on chemo days, so I was not upset about the delay.  I am very patient at the hospital.  I did not even complain to the secretaries about the wait (though I did remind them that I was still waiting, after an hour and a half, and then, again, after two hours).

When I approached the psychologist, I just wanted to confirm that he knew I was there for him.

I also expected some acknowledgement of my having waited so long. 

I expected empathy.

Would it have been so unreasonable for him to say, "I'm sorry for the inconvenience, here's what you need to do to make an appointment, please leave me your number and I will get back to you."

Instead, I felt berated for wasting his time by talking to him.  As he ushered his patient into his office, noting that they were already behind schedule, he turned to me and told me how to make an appointment, "should I still wish to talk with him."

If this was a cursing blog, I would insert all sorts of profanities here.

No, I did not still wish to talk with him.

I was outraged.  Though that was not my dominant feeling at that time.

After he was done blowing me off, I just wanted to cry.

I am glad someone was with me, to witness the interaction.  I needed a reality check:  Was this guy's reaction reasonable?  Did I do something to antagonize this guy?  Am I overreracting?

My friend reassured me that it was not my imagination, and that the psychologist had been excessively rude, with no provocation.

Even now, writing about it, I want to cry. 

How can someone treat another person like that?  Especially a cancer patient? 

I am not there for fun! 

How can a psychologist be so incredibly insensitive?

That is one door that I will not be knocking on anytime in the near future....



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

With love and optimism,
RivkA

People Die Every Day..... (Remember that British birthday song?)

The list of people I know who have died from cancer is growing too long.

You might think this is normal.  As we grow older, more people we know will die.  Many will die from some form of cancer.

But, being in the cancer world, means I get to know a lot more people who are going to die sooner, rather than later, from cancer. 

I am friendly by nature.  Everywhere I go, I meet new people.  (In this way, I am very much like my mother.)  I have made many friends in the cancer-world. 

Some friends are just "cancer ward friends."  When we meet at the hospital, we are friendly.  But we don't really have a relationship outside of the hospital.

Others have become very close friends, and my life is richer for knowing them.

But there is always a risk.  A risk that people will disappear.....


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

With love and optimism,
RivkA

Baruch Dayan Emet -- Betsy Shapiro z"l

When I met Betsy, she had metastasized Pancreatic Cancer.  I knew that was not good.  So did she.  So did her husband, who was always at her side.  But she was young, and healthy.  It was easy to hope that she would beat the cancer, somehow.  She lived for two years after her diagnosis.  For Pancreatic Cancer, that is considered a long time.

I never met Betsy before she was in treatment, but I knew her sister, had met her brother, and had heard of her husband.  I also know her nephew and his wife -- I teach their children swimming.

As I got to know Betsy, I learned that she was one of the founders of Kad Va'Chomer, a brilliant store, where kids and adults can paint prepared pottery, and create beautiful ceramic pieces.  Both my daughters have been to birthday parties there and came home with beautiful mugs and plates.  (okay, just one plate, but I couldn't figure out how to phrase that....)  When I met Betsy, she was still working there, once or twice a week.

I never got to know Betsy well.  We exchanged pleasantries at the hospital, but rarely talked about what she was going through, at least not in much detail.  To be honest, I did not want to know.  I was afraid of what she might be experiencing. 

She always looked great, even when she was not feeling so well.  It was easy to decieve myself, to convince myself that she would be around for a while.

I do not know why I thought I would know if something bad was imminent.  Maybe because we were being treated at the same place.

But you never really know what is going on with someone, unless they tell you.

A friend emailed me today, to let me know:
The Hakamat Matseva (Unveiling) in memory of Betsy Shapiro ז"ל, will take place this coming Friday, 2 Iyar 5770 (16.04.2010) at 9:30 AM, at Har HaMenuchot.

I did not know that she died.

I learned today that Betsy died just after Purim.  I went back and searched my inbox; there was an email, notifying people of her passing, and containing details about her funeral, and the shiv'a. 

She left behind 6 children, all young adults (2 young women and 4 young men).  Six kids who are really too young to lose their mother.  She will not be here to dance at their weddings, or celebrate the births of their children, or for any of the special occasions children like to share with their parents.

I did not know how to process the news of her passing.

We were not close.  But I saw her and her husband at the hospital many times over these last two years.

I would have gone to the shiv'a.

Maybe it is better that I did not know.  It would have been emotionally difficult for me to attend.  But it would also have provided some sort of closure.

Her passing makes me very sad.

Besides blogging about it, I am not sure what else to do.



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

With love and optimism,
RivkA

Parenting Crisis

I cannot write about it. 

It has nothing to do with cancer and everything to do with being a parent.

Everyone assures me that, usually, over time, these things pass.

Time.

It just takes time.

What if I am not here by that time?

Will it still work out?

It is all about being a parent. 

But I am a parent with cancer.

What if I don't have enough time to make it to "the other side" of being a parent?



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

With love and optimism,
RivkA

Beit Natan Winter Retreat (2010)

Two years ago, in 2008, not long after I was diagnosed with mets, my friend, EA, badgered me into going with her to Beit Natan's winter retreat. 

I was not interested in going.  I worried that spending 3 days with women dealing with cancer would be depressing and would drag me down.  She thought it would be good for me and that I would have a good time.

She was right.

But I did not know that yet...

I told her I would "think about it."

She called me every few days.  I told her I was "considering it."

Had she stopped calling, I would not have gone.  But she did not stop calling, and, eventually, she convinced me to try it.

I am so grateful for her persistance.

I had such a wonderful time (you can read about it here and here).  I could not wait for the retreat the following year (you can read about that here, here, here, and here).

This year's retreat is this Sunday to Tuesday.

My kids are bigger and more independent.  I no longer need to make all sorts of special arrangements to go away.  Besides moving swimming lessons to Wednesday, I did not have much to organize, other than packing my bags.

And, since we just recently had such wonderful family time together on our vacation, I do not feel bad about disappearing for a few days.  Everyone will be fine without me.  They will barely miss me.

I look forward to seeing old friends and making new ones.

Four of us, from our support group, are going -- three "old-timers" (M, L and me) and one "new" member, Z, who joined us this past summer.  I am happy to be going with friends.  It is also good for me to know who some of the other women with mets are.

I would have liked to bring my laptop with me, so I could blog at night.  But it is still not working.  Gam zu l'tovah (it's all for the best), this way I will probably sleep more. 

I'll try to post Tuesday, when I get home.  But I have shiur (Torah study class) that night, so no promises.

I guess life is back to "normal," because I suddenly feel very busy!



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

With love and optimism,
RivkA

Radiation Relationships

It's not to late to add your input about Monday's Blogger picnic -- the vote is pretty evenly split between Gan Sacher and Park Gilo. For more details and to leave a comment, see my previous post.
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Radiation therapy draws its unsuspecting victims into an alternative universe.

For 20 consecutive days, excluding Friday and Shabbat, I descended into the darkest depths of Machon Sharett, the cancer ward at Hadassah Ein Kerem. Then I trudged down the long, dimly lit corridor, until I reached the last door on my left, room 38.

I really could get into painting this "gloom and doom" picture, but it really would not give you an accurate picture, nor is it really the point of this post.

True, the radiation department is on the bottom floor of Machon Sharett. Also true, my radiation room was at the end of a very long, rather dim hallway (though better than I remembered from my last radiation treatments).

But I did not "trudge" to some ominous destination, and I certainly was not a victim.

Besides, this post is not about the journey, but rather the people we meet and the mysterious magic that happens when strangers meet, day after day, for weeks on end.

I spent the first few days of radiation in a haze, still in shock from my diagnosis and how fast my doctor scheduled me to begin radiation. It took me time to get into a routine. After a few days, I figured out what time works best for me to get to the hospital (around 10:00), where and how to park (give my "date"/driver the parking permit, and get on line while she parks), how much time I can expect to be there (20 minutes to an hour), and what my day will look like afterwards (SLEEPY).

By the third or fourth day, I could pick my head up out of the water enough to notice the people around me.

By the middle of the second week, I recognized the "regulars," most notably:

1. The solemn elderly Russian lady who, when I smiled at her, looked up and flashed me a gold-toothed smile. A few days later, I tried to talk with her, but could not understand her friendly response... in Russian. With no real common language, our exchanges consisted of very simple dialogue and hand signals.

2. The sweet older South African couple, with whom I established a real friendship. They came from out of the city, and arrived every day around the same time as I. I loved watching them together, so attentive of one another. (I know you are reading this, but it is true!)

This couple is the inspiration for this post.

You see, for almost a full month, we saw each other every day. Once we became friendly, we also spoke almost every day. We shared details about our lives, our families, our friends.

In the waiting area, our lives became intensely connected.

It is a very strange phenomenon -- this sudden connection and just as sudden disconnect.

Strangers become close friends, and then, in an instant, the day radiation is over, we return to our "normal" lives, and our "normal" circle of friends.

To a certain extent, this dynamic is also true about the radiation staff. Though the staff tends to keep a professional distance, some technicians are friendlier than others (if you are reading this, you know who you are!). Some of us even remember each other from my previous radiation (tw0 years ago, to my left hip).

I really appreciated it when the staff members treated me as a person, and not just a patient. It made the process a little less scary. For a few seconds, I could pretend I am out visiting friends and not in the hospital getting my brain zapped.

The relationship is even more intense, since I am relying on these people to get everything right. I was pretty nervous about the whole brain radiation, and every day I had another question or two. As I got more answers, I felt increasingly confident about my treatment.

And then, as with the other patients, one day it was over. These people, in whose trust I placed my life, and who I saw every day, are now... in another world.

They exist in an alternative universe, one I hope not to visit again.



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

With love and optimism,
RivkA

MRI - A Different Experience

So, I called Hadassa Ein Kerem on Sunday, and the person I needed to speak with was not there. To my pleasant surprise, the secretary (not someone I spoke with before) gently asked if, perhaps, she could help me.

She seemed so nice, I calmly explained the situation to her. Unfortunately, she could only put me on the waiting. I was not satisfied with this, but she very kindly explained that I would get an earlier appointment, she just did not know when yet; someone would call me. At the same time, she encouraged me to call often, as that might speed things up.

In the end, I received a call later that evening, with an appointment for 10:30 pm, the following night!

So, Monday night, after our final aseifat horim, we went straight to Hadassah EK. At night, parking is a lot easier, as was everything else. We had to register at the Emergency Room reception. It was quiet there and I just waited a few minutes before a very sweet young woman filed my forms. Then I went to the MRI department.

The secretaries do not work there at night. So, I waited for one of the technicians to come and take my forms.

In the meanwhile, there was a heated discussion going on between the five other people waiting about whether a Rav (Rabbi) can choose who to service or whether he is a shaliyah tzibbur (emmisary of the people) and has to attend to the needs of anyone who turns to him. There were two hareidi (ultra-Orthodox) couples arguing with a woman who might have been secular, (her clothes were modest and loose-fitting, but she was wearing pants and no head covering), but who I suspect was either traditional or modern religious. She certainly was not anti-religious. It was a good natured, but heated discussion. I joined right in (אילה מה - what did you expect?). I "look" religious (I always cover my hair and I was wearing a skirt), so the couples assumed I would agree with them, but I actually agreed with the woman. They were talking about a very well-know Rabbi who had refused to read a letter that was sent to him from a woman. I actually found it quite offensive that the Rabbi dismissed the letter, but the tone of the discussion was quite friendly, so I did not pursue that point.

After a short time, a young woman was wheeled out (in a wheelchair) from the MRI rooms. It turns out, she is someone I know from Beit Natan. A few years ago, she had breast cancer. Now, here she is, still so young, and she just had surgery to remove a tumor from her brain. I was shocked, though I tried not to show how worried I was for her. She found the tumor because had been suffering from headaches. How many women do I know who were just diagnosed with brainmets? I think this makes 6? My doctor's words echoed in my head "with symptomatic brain tumors... 2 years would be considered a long time."

When I was called in, I started feeling anxious. I mentioned to the attending physicians that the last time I had an MRI, they burst a vein and it was very painful.

Dr. Michael, the male Russian doctor who put in the needle for the contrast, did not seem particularly gentle. He chose a location, in my upper arm, that scared me. I expected it to be very painful, despite his reassurances. I closed my eyes, and focussed on my breathing to try and stay relaxed and calm. I felt a small prick and that was it! I was amazed! He might be my new favorite!

The technician, Andre, also Russian, was constantly smiling and was so nice. I recognized him from the last time. There was also an American woman working there who I recognized, who is also nice and helpful. She checked in with me several times during the radiation, to make sure I was ok.

I was worried when they injected the contrast, but besides the cool sensation I did not feel anything. I was able to relax after that and actually slept through the rest of the MRI.

When we left, I realized that this visit, with the empty corridors and the quiet calm, left me feeling much more relaxed. I almost felt bad about my rant a few days ago...

I might even write a letter about how wonderful Dr. Michael is...



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

With love and optimism,
RivkA

I Feel Like and Idiot

I am in a lot of pain, and it is all my fault.

For the last few months, I have only had to take pain killers sporadically.

However, for the last few days, I have had to take pain killers every evening. As long as I take the pain killers before the pain gets too bad, I am fine. Usually, that is not a problem. I really should just take them systematically, every evening, around six.

Tonight we had a simcha, the joint Bar and Bat Mitzvah celebration of our friends' children (a 12 year old sister and a 13 year old brother).

I usually take pain killers before, or at the beginning of, a simcha. Between the standing around, the sitting around, and the dancing, I have learned that if I do not take pain killers, I will suffer from pain.

Well, tonight I forgot to take pain killers as a precaution and, even though I felt the back pain begin, I also kept getting distracted and forgetting to take the pain killers during the event, even as the pain got worse.

By the time we were on our way home, I was in agony.

The pain was completely unnecessary and avoidable.

And that is why I feel like an idiot.



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

With love and optimism,
RivkA

Shabbat & Shiv'a

This was the last Shabbat before the rest of my family leaves. Everyone but my dad, who had to return to work immediately after the Bar Mitzvah, is still here.

My sister would have been happy to host us all again, but we were really hot at her place last Shabbat. So, despite the balagan (mess) at my home, everyone converged at our home.

Truthfully, it is more comfortable for me in my own home. (I imagine my sister feels the same way.)

Everyone helped make this Shabbat happen, especially my sister and sister-in-law. My youngest also helped above and beyond the call of duty, especially on Friday.

It was so great to be together for Shabbat. I love being with my brother and sister. We are all close and it is so hard for us to live so far apart.

I especially love watching my two kids playing with their cousins. (My eldest is still away on "seminarion.")

All of my son's best qualities come out when he is with his little cousins (ages 2 and 5). My nephews, God bless them, are a real handful. My son seems to have infinite patience with them. He is gentle, and tolerant, and caring. And he is so forgiving. One of his nephews broke off pieces from his model of the Beit HaMidash (that he built with his Abba, and is one of his most prized possessions); my son did not lose his cool nor bear his nephew a grudge (though he did lock his door for a few days).

My son recently mentioned that he wants to babysit for other kids. I can see that he will be good at it. He is responsible and nurturing around little kids. And he has that "magic" that his father has -- little kids love to be held and cared for by him.

Today, my son asked if he helped care for his little sister when she was a baby. He did. Quite well.

My youngest also has a very special relationship with her nephews. She has that same "magic." Her cousins adore her.

Amazingly, my two kids played with their cousins without any sort of competition. It was very heartwarming to watch them.

Shabbat ended too soon and we all needed to go our own way.

Moshe and I went to the Shiv'a of Tamar bat Na'ama, z"l. (I recently wrote about her in this post)

(I was surprised to meet at the Shiv'a two other people I know whose lives are touched by cancer. The husband of M, from my support group, who is related to Tamar's father. And R, who also has stage 4 breast cancer, is also related (I forget how). It was strange to come together in this way.)

Tamar was only 12 ½ when she lost her battle with cancer, last Tuesday. Her optimism and love of life made it easy for others to underestimate how sick she was. Many of her classmates did not even know that she was still in treatment. She just wanted to be a "normal" kid and live life to the fullest, which she did.

Like so many others, I also believed she would be okay. How could she not be, with such a fighting spirit?

I am so saddened by her death. I am so sad for her parents and her siblings.

And I am scared. She was young, and strong, and positive, and full of life.... If cancer can claim her life, after only four years....

I just don't want to think about it.

Tamar was an exceptional young girl, and her family did everything they could to help her live her life the way she wanted, with faith and joy and full of activity!

Tamar spent her last days at home, surrounded by the warmth and love of her family.

In her final moments, as breathing became increasingly difficult, she turned to her mother and father and said: "I feel that I am dying. I love you. Do not cry."

Then, with her final breath, she recited: שמע ישראל ה' אלקינו ה' אחד
(Hear, O Israel, the Lord is our God, the Lord is one)

I pray that when my time comes I will have the strength to let go with the same grace.

יהי זיכרה ברוך -- May her memory be a blessing



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

With love and optimism,
RivkA

Surrealistic

I wanted to post an upbeat post today. (especially since I have posted several "heavier" posts lately)

I knew that today was going to be a good day!

I planned to spend the morning and afternoon with my brother, his lovely wife, and their two ADORABLE little boys. This was going to be my day with them.

I planned to take them to Migdal David (The Tower of David Museum), where I have been a guide (on and off) for almost 20 years! (19, to be exact) It is my FAVORITE museum in Jerusalem, and I love guiding there. So it is especially great to share the museum with my family!

And then tonight Moshe and I planned to go out to dinner to celebrate our 16th wedding anniversary.

What could be bad?

Well, I did both of those things! And they were each wonderful, in their own way.

But in the middle, my world collapsed a little.

We had already spent over 4 hours at Migdal David when Moshe called. (I thought we would spend about 3 hours there but everything takes longer with small kids! We were all exhausted by the end of the day, but it was worth it!)

Moshe had just learned that our friend's daughter, who recently celebrated her Bat Mitzvah (around March), died today from cancer. He knew that I would want to know.

It is difficult for me even to write these words.

When I first started blogging, I was surprised to find that one of my regular readers was a woman with whom Moshe had worked in the past. As the mother of a child with cancer, she drew strength and support from my blog. I was amazed, and honored, to be able to provide that for her. I could not imagine the challenges of raising a child with cancer.

Over time, we emailed, we talked, we got to know each other.

I last saw her with her daughter at Zichron Menachem's Purim celebration. Her daughter looked great! (besides having no hair) She was full of energy, as usual, and having a great time! She looked so young and strong!

All the doctors emphasize that, today, people can live for years with cancer. Surely, I believed, my friend's daughter would be okay!

About a year and a half ago, I met my friend at the Bar Mitzvah of the son of a mutual friend. My friend admitted that she was afraid to begin planning her daughter's Bat Mitzvah so far in advance. Who knew what might be.

I had a brief glimpse into the horrible fear that a mother feels when her child has cancer.

When I posted Choose Life (last May), I received the following letter from my friend:

Hi RivkA

I read your posts every day, and today’s has really stunned me.

In Tamar’s Bat-Mitzva, 3 months ago, I talked about just the same thing. I gave my personal interpretation to “Uvacharta Bachaim” – sometimes you cannot choose whether you’ll live or die, but you can choose to live the life you are given.

She sent me the text of her drasha (speech) and I read it all (in Hebrew!). It was so moving, and so full of life!

And now, here I was, in the middle of giving a tour to my brother and his family, and I did not know how to deal with this loss.

I took a few minutes to try and regain my composure and figure out what I should do. I knew that I would not have another opportunity to spend time alone with my brother and his family.

I decided that I needed to finish giving my family their tour. I did not want to cut it short.

If I finished in time, I would try to attend the funeral. If not, I would simply go to the shiv'a (mourning house).

I forced myself to focus on the moment, and to be with my family 100 percent.

I did not rush myself or my family. It took us at least another hour before we left the museum.

I realized that I was not going to make it to the funeral.

(To be honest, I was a bit relieved. I am not at all certain that it would have been good for me to attend the funeral, even though I really wanted to go.)

When we got home, I helped my brother and sister in law to find some information they needed, then I went to get ready to go out for our anniversary.

Moshe and I had a lovely dinner together. Afterwards, we went to the hotel where we got married (we have been doing this every year since we got married).

We spent an hour, or so, just hanging out in the area where we had our wedding, talking about all sorts of things.

It was very special.

Among other things, we spoke about our friend and her daughter. How could we not?



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

With love and optimism,
RivkA

Hard to Forget

Taking pills every days makes it hard to forget that I have cancer.

Chemo once a week was not fun, but it left me with 6 days to pretend that I was "normal."



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

With love and optimism,
RivkA

Letting Go

(written last week -- forgot to post....)
----------------------------------------------------

My “plan” had been to “get through” all the end-of-the-year stuff and then focus on the bar mitzvah.

Of course, discovering brain mets less than a week before school ended stuck a real wrench into that plan!

I started radiation the first day of summer vacation!!

The almost immediate exhaustion hit me by surprise. I kept telling myself, I’ll start working on the bar mitzvah tomorrow…. hopefully I’ll be less tired then….

Yeah, right.

So, here we are, time is running out, and nothing is moving.

Those of you who do not know me personally might have figured out by now that I am definitely a “Type A” personality (those of you, who do know me, figured this out a long time ago). Among other characteristics, I’m a control freak.

Now, knowing that you have to let go of some of that control and actually letting go are two completely different ballgames!

So many wonderful people offered to help me, but I was too tired to even get them organized!! I did not know what to do with all those general offers to help. (Though I did think to ask people to bake for the Kiddush -- at least my brain has not retired completely!)

Thanks to a session with my OT, I made a list of things-to-do and figured out what I could give over to someone else.

I gave over so much already, and I’m still giving over more!

I am grateful for all the help offered by friends, family and acquaintances.

My sister-in-law (SIL) called almost every day, begging for more things to do! She made a MILLION calls to halls, caterers, family, friends, etc. (Did I mention that she has seven small kids of her own?!?)

My sister, SIL, and mother-and-father-in-law (MIL & FIL) all took various kids shopping for clothes for the simcha – not an easy task and one that I DREADED!!

Oh yeah, and did I mention that my in-laws, when they heard about my diagnosis, three days before they were going to fly to America, CANCELLED their trip so they could be here to help us!!

I am truly blessed.

Meanwhile, my son knows his parsha and his haftorah, and that is really all that matters!



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

With love and optimism,
RivkA

Tish'a B'Av (The 9th of Av)

Almost every year, for the past 14 years, I walked around the Old City on the night of Tisha B'Av.

(You can read last year's post about the walk here.)

(You can read last year's post about how wierd it is not to fast here.)

In all those years, I only missed the walk twice: the year my son was born and one other year (maybe the year my daughter was born?), when I was not up for the walk.

This year, I could not do the walk. As opposed to those other years, when I could not participate for positive reasons, this year I could not do the walk because I am just too tired and in too much pain.

Today was a full and busy day! I spent the early morning on Bar Mitzvah stuff, the late morning working with one of my angels to clean up my kitchen, and the afternoon at the Brit Milah of a friend (and former roommate).

I came home from the Brit and just wanted to take a nap, but there were other demands and not enough time.

Originally, I planned to go with my family, like we have done for the past few years, to hear our good friend, TS, read Eicha for us at the Tayelet, overlooking Har HaBayit. From there we would join up with the Women in Green, who organize and lead the walk around the walls.

For several days now, I wondered if I would be up for the walk; but I certainly expected to go hear my friend read Eicha.

Recently, thank God, I have not been suffering badly from pain. Some days, I do not take any pain killers at all; many other days, I only take them once or twice a day. However, this evening my back and ribs hurt me a lot, even after I took pain killers.

I realized that even sitting on a bench would be too painful for me. Instead of concentrating on the reading, I would be focused on the pain (and waiting for the reading to end so that I could get home and rest).

I worried how my kids would react to this change in events. My staying home would definitely be a break in "the normal order of things." But I had to admit that pushing myself beyond my limitations, "for the sake of my kids," would not be good for any of us.

I broke the news to my husband and kids, who were sad that I would not be joining them, but understood.

My sister offered to come over and read Eicha with me. We both felt that it would be more meaningful for us to read it together. I shared that information with my kids, and I think it made the situation more acceptable.

When my sister arrived, we had a real heart-to-heart. It was good to have that time (and the talk) with her. Then we got out a candle, turned off most of the lights, sat on a low couch, and read Eicha.

In the middle of our reading, my eldest returned home (they had finished reading Eicha already). My daughter has had a cramp in her leg for several days and she realized she that she would not be able to do the walk either. She went into the computer room and watched Home Game, a film about the destruction of Gush Katif. This particular film juxtaposes the expulsion with the local basketball playoffs -- it is a powerful and moving film.

I am really sad that I was not able to mark Tisha B'Av the way I wanted.

I do recognize that I made the right decisions.

But it is hard.

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May those of you who are fasting have a meaningful, and easy, fast.

May the Temple be rebuilt speedily and in our day!

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

With love and optimism,
RivkA

I'm Done with Radiation!!! (Medical Update)

I started counting down last Wednesday, when I had just 5 more to go!

Well, I am done!! Today was my last time!!

I started saying my goodbyes yesterday. It is a fascinating thing, meeting the same people every day for several weeks, becoming intertwined in each others' lives, and then parting, perhaps never to meet again.

Anyway, though I am finished with the treatments, the effects keep on going for a while longer. My head/scalp might get redder over the next two weeks. (oh, joy)

The main thing is that the effects of the radiation continue inside my brain for at least another month and a half. We'll do another MRI at that time to see what the radiation accomplished.

Meanwhile, I am still experiencing the side effects: fatigue, loss of appetite (particularly in the evenings), occasional nauseu, itchy scalp (from dryness -- the nurse gave me), and tired eyes (making it difficult to read small print). I think there are other side effects, but I cannot remember them.

My memory has flown out the window over these past few weeks. The doctor said that it is too early for that to be a side effect of the radiation. I am not convinced.

I am having difficulty remember things as simple as street names. This is not my usual forgetfulness.

I just hope the exhaustion goes away soon. It can take a few weeks; but I have stuff to do NOW!!

(Have I mentioned that we STILL have not invited everyone to the Bar Mitzvah, which is now LESS than a week away?!?!)



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

With love and optimism,
RivkA

The Bar Mitzvah is Coming -- ready or not!!

My “plan” had been to “get through” all the end-of-the-year stuff and then focus on my son's bar mitzvah.

Of course, discovering brain mets less than a week before school ended stuck a real wrench into that plan!

I started radiation the first day of summer vacation!!

The almost immediate exhaustion hit me by surprise. I kept telling myself, I’ll start working on the bar mitzvah tomorrow…. hopefully I’ll be less tired then….

Yeah, right.

So, here we are and time is running out. After weeks of nothing moving, everything is moving forward, full speed ahead!

I am too tired to keep up!!

Those of you who do not know me personally might have figured out by now that I am definitely a “Type A” personality (those of you, who do know me, figured this out a long time ago). Among other characteristics, I’m a control freak.

Now, knowing that you have to let go of some of that control and actually letting go are two completely different ballgames!

So many wonderful people offered to help me, but I was too tired to even get them organized!! I did not know what to do with all those general offers to help. (Though I did think to ask people to bake for the Kiddush -- at least my brain has not retired completely!)

Thanks to a session with my OT, I made a list of things-to-do and figured out what I could give over to someone else.

I gave over so much already, and I’m still giving over more!

I am grateful for all the help offered by friends, family and acquaintances.

My sister-in-law (SIL) called almost every day, begging for more things to do! She made a MILLION calls to halls, caterers, family, friends, etc. (Did I mention that she has seven small kids of her own?!?)

My sister, SIL, and mother-and-father-in-law (MIL & FIL) all took various kids shopping for clothes for the simcha (celebration) – not an easy task and one that I DREADED!!

Oh yeah, and did I mention that my in-laws, when they first learned of my diagnosis, three days before they were going to fly to America, CANCELLED their trip so they could be here to help us!!

I am truly blessed.

Meanwhile, my son knows his parsha (Torah reading) and his haftorah, and that is really all that matters!



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

With love and optimism,
RivkA

Bald, bald, bald...bald as a ping pong ball, are you bald!

Only whisps of hair were left.

I took a deep breath and let the rest be shaved off.

Now I can rub aloe vera into my scalp and soothe the redness from the radiation.

The buzz cut feels kind of funky.

I encouraged all my kids to rub the top of my head.

I tried to make it fun.

Bald looks better than extreme thinning.

Bald is cool in the summer.

"Now it looks like you have cancer...." said my daughter.



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

With love and optimism,
RivkA

Freakin' Me Out!!

When my youngest saw me with almost no hair she came up to me and gave me the sweetest hug.

As she hugged me, she said in the cutest voice, "Ima, it's kinda' freaking me out."

At first, I thought she was just disturbed about my hair falling out and the wierd way it looks.

A few days later, following the suggestion of the psychologist from our support group (at Beit Natan), I asked her what is freaking her out.

"Well," she said, "the idea of cancer in your brain is sort of scary."

"I know," I gently responded, "it is sort of scary for me too."



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

With love and optimism,
RivkA

My Head is Tingling

The first time my head started tingling I thought my kids brought me a gift from school, if you know what I mean....

How unfair to have cancer *and* creepy crawlies! I mean, come on!

But when I combed my hair, I did not find any unpleasant surprises (thank God!)

A few days later, I had a different, but no less unpleasant, surprise. My hair started falling out.

So far, I have never lost all of my hair. Over time, especially this year, my hair has thinned dramatically. However, I still have enough hair sticking out of my headscarves (which I wear for religious reasons, having nothing to do with cancer) to give the illusion that I have not lost my hair.

Also, because I am fair skinned, and fair haired, even when I lost most of the hairs on my eyebrows, there were some people who did not notice, though most did (I think).

Recently, I noticed that my hair was growing back. It made me feel good.

Then, about a week and a half into radiation, my head started tingling again. The doctors and the nurses warned me that the radiation could make my hair fall out. They also told me that for some people, the hair loss is permanent. I, of course, did not really believe that my hair would fall out... until I felt the tingling.

During the past few days, the tingling became more intense and more frequent. I knew what was coming.

I first noticed the hair coming out on Friday. By Shabbat, the loss accelerated.

I feel like a puppy. I am shedding.

I am not freaking out, but it does make me sad.

I am wondering if I should just shave it all off, to save the mess.

I wonder if that would be allowed during the three weeks (from the 17th of Tamuz through the 9th of Av, when Jews traditionally refrain from cutting their hair as a sign of mourning the destruction of the Temple).




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

With love and optimism,
RivkA

Radiation

I've been so busy trying to "catch up," that I have not posted anything about how I have been since I began radiation.

In a word: TIRED!

I am exhausted!! If I do anything that is the least bit taxing, I need to sleep for hours!!

I had radiation before, almost two years ago, on my hip. I felt drained by the experience, but nothing like what I'm feeling now. One of the doctors said that it is common for people to be extremely tired from radiation to the head.

The whole process is pretty amazing. I'm in and out in less than five minutes. It's hard to imagine that something so quick could have such a huge impact on my energy level.

I walk in the room and lie down on the machine. The technicians then strap on my mask (oops, keep meaning to post about that) and align the machine. Then they leave the room, and the machine slowly rotates to the first position, zaps me, then slowly rotates to the second position and zaps me again. Then it rotates back to the original position, the technicians re-enter the room, I get up, replace my head covering and walk out. The actual zapping takes only about 5 seconds on each side (the zap me twice).

The machine makes a high pitched buzzing noise during the zapping and emits a sort of odor (maybe like bleach?).

Today, when I came out of radiation, my friend was so surprised to see me so soon she asked "did they decide not to give you radiation today?" Her jaw dropped when I told her I was already done.

The longest part of the process is waiting your turn. Most days, I wait 45 minutes to an hour for my turn.

One day, there were only two people in front of me and I was out of there in less around 15 minutes. Most days are not like that.



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

With love and optimism,
RivkA

"...and they told two friends, and so on, and so on..."

I wrote this on Tuesday, June 30th, less than a week after learning that I have brain mets and before I had a chance to tell my eldest, who was away....
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Remember that commercial?* The one from the 80's that goes:

"... I told two friends... and they told two friends, and so on, and so on, and so on..."

Well, apparently people have been talking, 'cause today I received a call from a good friend who "just heard some not so good news and wanted to know if it was true...."

I have not discussed what has been going on with almost anybody. We told immediate family, a few close friends, and a few other friends who happened to be in the "right" place at the "right" time. But because my eldest daughter is away, we have not really told people.

We feel that our kids should know before other people.

I certainly do not want any of our kids to ever hear news about me from someone else.

So, tonight, when my daughter called, I had to tell her. Once people start talking, there is no way to know how far the news is spreading, nor how fast.

So, when she called tonight, with minimal time left on her battery, I gave her an update.

It was less than ideal. She is away from home, with a group of girls, most of whom she just met, and she is not coming home for another two days. And I just dumped this big thing on her.

I explained why I told her now and she agreed that I made the right decision. Then I encouraged her to try to put the news in a box, which we will deal with when she gets back. I think (hope) that worked for her.

And I answered her big question, "Is it dangerous?" which she asked THREE times. I told her the same thing the doctor told me: We can treat it and you can live with it for years.


This whole episode reminded me of the chassidic tale A Pillow full of Feathers.



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

With love and optimism,
RivkA

*I always thought it was a commercial for MCI, but it turns out that it was for Faberge Organic.