Medical Update --Markers

I haven't quite figured out the marker thing yet.

CA 125 seems to be "my" marker.

CA 125 is often linked to ovarian cancer, but not exclusively.

When I was diagnosed with mets, in the summer of 2007, my CA 125 was 56.7 (high).

Five and a half weeks into treatment, my marker dropped to 32.2 (normal).

Two months later, at the end of October, it was down to 23.7 (normal).

At the end of December, it was 26.1 (still normal).

Then, in February, the numbers began to fluctuate:
5.2.08 -- 35.6 (high)
4.3.08 -- 32.5 (normal)

Then, in April, the numbers slowly and steadily began to climb up:
29.4.08 -- 47.0 (high)
10.6.08 -- 68.7 (higher than when we started)
1.7.08 -- 71.9
19.8.08 -- 102.1
2.9.08 -- 120.9

The diagnostics seem to indicate that my treatment is effective.

So why has my CA-125 count has been rising for months now?

No one knows why.

We have done all the tests:
CT -- everything looks the same
MRI -- we really needed to check my liver, and discovered that it looks even better than expected.
Ultrasound -- a few months ago, there was something strange near my left ovary. It did not "look like cancer," but I needed to follow up on it. I did an ultrasound this past Tuesday... there is nothing there anymore.

I met with a gyno-oncologist. (I bet you did not know there was such a thing! I sure didn't)

My gyno-oncologist (GO) only has clinic hours on Tuesdays, so I waited for a "free week" to go spend the morning at a different hospital, Hadassah Har Zofim.

Moshe came with me.

The GO was present for the ultrasound (as was some other woman, in addition to the technician). I might have minded the "invasion," if it weren't for the fact that I was anxious about the growth and the fact that all three agreed that nothing was there anymore. I mean, if something was still there, one of them would have seen it, right?

Anyway, after the ultrasound, we had to go to the GO's clinic.

Moshe had an important meeting at work, but he wanted to be at my meeting with the GO, since I don't remember anything these days.

Even though the doctors were running a bit late (because the department who schedules these appointments seems to be unaware that there is a staff meeting every Tuesday morning....), we (read: I) thought Moshe could still make it on time to his work meeting.

I was supposed to be the first patient to see the doctor.

Moshe, being infinitely more pessimistic, expected something to come up. It did. The doctor took another patient in before us, because they had a brit that morning.

By the time we were inivited in, 45 minutes later, I was completely anxious, and knew that Moshe would be late. The doctor, sensing my anxiety (you'd have to be blind to miss it), offerred to meet with us later, at our convenience. I was so aggitated, that I was ready to come back another time. Luckily, Moshe was cool-headed and assured the doctor that it would be alright, and we should meet now.

The GO suggested that we leave the tension outside, so that he can give me all the time and attention that I needed.

It was hard to release the tension, because my rising markers made me tense to begin with, and that was why we were there!

But I was impressed, yet again, with the doctor's gentle and concerned manner.

In the end, we also spent at least 1/2 an hour with the doctor. He spoke with us in detail, and also consulted with my oncologist.

The bottom line, there is nothing to do at this time.

Neither the GO nor my oncologist recommends checking out my ovaries laproscopically. There is no indication that the GO would find anything. And, given my weight and medical history, including 6 abdominal surgeries, resulting in a lot of scar tissue and adhesions, the surgery would not be simple. Not to mention that I've had 3 serious post-op infections in the past....

So, what do we do about the rising markers?

Nothing.

Just "wait and see".....

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

With love and optimism,
RivkA

Support Group -- "Bein HaZmanim"

"Bein HaZmanim" is the "in-between time." (Yeshiva terminology, referring to the 3 week break in learning from Tisha B'av to Rosh Hodesh Elul. Some yeshivot also take off for a few weeks around Pesach)
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At our "final" meeting, we discovered that none of us wanted our support group to end.

Our wonderful facilitator was going abroad for a year.

We were on our own.

We decided to meet twice, within the next five weeks, "before the chagim." (holidays)

Perhaps, "after the chagim," Beit Natan would find us another facilitator.

Meanwhile, we were advised that one of us should be assigned to lead each meeting.

I volunteered to lead the first meeting.

We decided that I would prepare something in the spirit of Elul (the Jewish month, when we reflect on the past year and the changes we would like to make in the upcoming year).

Five of us came to our first, "independent," meeting (L, C, M, Y & me). C had Sheva B'rachot that night, and still chose to attend our meeting first, before heading by bus to Ashdod!

We spent the first few minutes "catching up."

Then I asked everyone to take a piece of paper, and draw segments divided by straight lines on one side, and segments divided by curvy lines, on the other.

On the side with straight lines, I asked everyone to write about things, not necessarily cancer related, that we regretted about the past year. Then, on the side with curvy lines, we wrote about things we hope to do differently next year.

Then, we shared how we felt when we were writing.

Not surprisingly, it was harder to examine our flaws. I know that I felt overwhelmed by all the things that I wish I could change.

When discussing the flip-side, participants felt satisfaction. The felt happy about the things they were doing well.

When I turned over the page, I also felt my mood switch. I felt the burden of my failures lift, and the opportunity to do better next year.

After summing up everyone's emotions, I shared some of my thoughts about the page:

The straight lines create sharp angles, representing the harshness with which we view our own faults. The smooth, wavy lines are meant to guide us in being gentler in our judgments of ourselves, in helping us be more flexible and open in the future, helping us to "go with the flow."

Though there were many tangents over the course of the meeting, I felt the meeting went well. We'll see what kind of feedback there is.

I have years of experience as a group facilitator, however leading our group was particularly challenging. I was not an outsider, coming in to lead the discussion; I was also part of the group. The dynamics were different, both in the way the group related to me and how I related to the group. Nevertheless, I think I was successful in creating an open, and dynamic meeting, and in preserving our "safe space."

The meeting was also challenging, because one of the women was going through a particularly difficult time. It was clear to me that she needed more support than a simple support group can provide. I tried to give her the space she needed to share, allow time for women to support her, and still keep the discussion focused and on track. It was hard, but I think I succeeded.

We ended our meeting, as we always do, standing in a circle, arms wrapped around each other. One by one, we each say, in one word, an emotion that represents how we are feeling, right now, in this moment.

Warmth.

Support.

Together.



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

With love and optimism,
RivkA

Ups and Downs -- Part II

My dear, wonderful, warm, caring, friends,

I love reading your insightful, and thoughtful comments. It's fun to see who is reading my blog, and who has what to say. Comments make me smile!

(here it comes.....)

BUT, though I recognize that those of you who recommended therapy as a response to my previous post, did so because you love and care about me..... YOU TOTALLY MISSED THE POINT of my post.

The post was about mood swings. About the ups and downs of living with illness (in my case, cancer).

It is totally normal to have ups and downs.

I am not debating the benefits of therapy.

If I want/need therapy, I will get it.

I am surrounded by people (to begin with, my husband, and my oncologist) who will let me know if/when it is time to seek outside help.

I know therapy is available if I want it.

I appreciate all your comments and emails, I really do.

BUT, I really felt bombarded by so many suggestions that I go for therapy.

I am sure that I can benefit from therapy.

I have LOTS of issues. (I had most of them before I got cancer)

BUT, my TIME is LIMITED. I cannot do everything.

Right now, unless I need it, I don't want to spend an hour a week in therapy, plus travel time.

There are other things I would rather do with my time.

If I only wrote about how great I feel, and how great life is (and life is great), then this would not be an accurate portrayal of what it is like to live with cancer. Because, friends, cancer SUCKS. And, no matter how great my attitude is, cancer still sucks.

And no amount of therapy is going to change that.

And no amount of therapy is going to make the cancer go away.

And that's why, even with the best therapy in the whole wide world, I will still have mood swings.

Because, quite honestly, it is not easy living with cancer.
(Even though I'm doing great, thank God, thanks to all of your prayers, and happy, healing thoughts)

I wish the cancer would just go away.

I really do.

But, I live in the real world. And, for now, my cancer is a permanent, chronic, condition.

I can live with that.

For someone living with cancer, I am proud to say that I have a damn good attitude. In fact, I would go so far as to say that I have an exceptional attitude.

So, do me a favor. If you think I need therapy, then, please, give me, or my husband, a call. Tell us that you are worried, and why.

If not, please don't tell me I should go to therapy, just because sometimes I'm sad that I have cancer.

I am not depressed. I am not in denial.

I have cancer.

Sometimes that makes me feel sad.



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

With love and optimism,
RivkA

Ups and Downs

"So, kiddo, how are you doing?" asked my oncologist, as he opened my files (the one on his desk and the one on his computer).

"Well," I began, "my mood has been swinging up and down...."

He stopped.

"You get depressed?" he asked, with a puzzled look.

"Yeah, she does," confirmed Moshe.

"'cause I don't see it..." continued my oncologist.

Even in the chemo ward, my mood is usually upbeat -- probably because every week a different friend comes to hang out and I just enjoy the company so much!

"What are you feeling?" he asked, looking at me seriously.

"I'm having a hard time with the "long term" thing," I explained (not for the first time). "I just wish I could look forward to a time when it will be over."

"Do you want to see someone?" he asked (also not for the first time).

The thing is, I am not clinically depressed. I get out of bed in the morning. I am active. I have a strong support network: family, friends, my support group, and my blog.

What more would I get from therapy? I asked. There is no clinical indication that I need a psychologist. It all depends on how I feel.

Overall, I feel I am handling things pretty well. Both my husband and my oncologist agree.

But I still have mood swings. I still wish it would all just go away.

Someone once told me that all the cancer stuff would eventually fade into the background, like white noise from the radio.

I hope that is true.

Meanwhile, I hear the radio blaring and I really wish someone would change the channel.




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

With love and optimism,
RivkA

Telling the Teachers

This is the third year I have to tell my kids' teachers about our “situation.”

You might think the telling would get easier with time. It doesn’t.

Our kids are in school so much of the day. I have to rely on their teachers to be our eyes and ears. It is likely that the teacher will notice if something is wrong, maybe even before I do.

I need the teachers on my team.

But it is difficult. Difficult introducting the "situation;" difficult explaining the "situation;" difficult making sure they know to be on the lookout; difficult conveying that we want to know about anything unusal right away (and they should not "protect" us by keeping information from us); difficult conveying information so that they understand, without pitying me, or my children.

They need to know.

Hopefully, this is just a precaution. Hopefully, my cancer won't be an "issue" for my kids.

But the teachers need to know.

And I need to tell them.



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

With love and optimism,
RivkA

Giving and Receiving

Our support group seems to have dwinded.... but, not exactly. Each meeting, only 5-6 women attend; however, each time it is different women. We seem to be fluctuate between 10 "regulars." (2 women seem to have dropped out).

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The subject of this week's support group, "Giving and Receiving," could not have been more aptly timed. (to understand why, read my previous post)

"Which is more difficult," asked our group's facilitator, "and why?"

We give from a place of strenth; we are empowered by giving.

We receive from a place of weakness; receiving makes us feel "needy."

We prefer to be "givers" rather than "takers."

We have strong egos. We cling to our self-image of being "hakol yachol" (able to do anything).

Accepting help means accepting our inability to do that which we did before. We do not want to accept our limitations. So we resist.

We know:
* it takes strength to accept help
* we would be happy to help, so we should be happy to accept help
* we are giving other people the opporunity to do mitzvot (good deeds)
* by accepting their help, we are allowing the people who care about us to feel involved and useful

We also know that we really do need help.

We know all these things to be true. Yet, asking for help is one of the hardest things for us to do.

We are learning.

I am learning.

I have learned to keep lists. If someone offers to help me, I write it down. If I don't, I will forget who offered.

If I am out and about, I probably don't need help at that moment. But I will need help another time and it is easier to call someone who has already offered to help.

If someone offers a particular kind of help, I write that down too. Not everyone is willing to go shopping, pick up my kids, do my laundry, or help me clean my house... but some people are.

I am learning to be gracious. When someone helps me, whether solicited or not, I say "Thank you."

Rather than throwing out some sort of deprecating comment (choose any of the following: 1. "you shouldn't have...", 2. "it wasn't necessary..." 3. "we don't really need it..."), I express my appreciation: "Thank you for thinking of us", "That was helpful/thoughtful/kind," "I really appreciate your efforts."

Slowly, very slowly, I am learning not only to accept help, but also to ask for the help I need.

I am learning to say "Thank you. We don't really need 'that', but 'this' would be very helpful."

It's a process.

After I was diagnosed last summer, Moshe turned to me and said decisively: "You need to squelch your natural inclination and, every time someone offers to help, just say 'yes'!"

Who would have thought that saying "yes" could be so difficult?



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

With love and optimism,
RivkA

Beit Natan Summer "Retreat" -- Part II

(Click here to read Part I)


I chose the afternoon session called "Etgarim" (challenges). I did not know what to expect, but it sounded like fun. Little did I know....

We drove in shifts to Ya'ar Yerushalayim (the Jerusalem Forest), where there were three madrichot (guides) waiting for us. They would be leading the session with J, one of the psychologists from Beit Natan (she gave an excellent lecture at the winter retreat).

As we waited for the rest of our group to arrive, I asked D, one of the madrichot, about Etgarim. Etgarim began as an organization to provide physical challenges for necheh Tzahal (wounded soldiers). Over time, it expanded and now offers challenges for all sorts of groups, including youth at risk, other groups with disabilities, etc. I discovered that D also had a disability -- she was deaf (she spoke so clearly, that I hadn't noticed).

When everyone arrived, we introduced ourselves. We began our first challenge by forming a human knot and working together to untangle the knot. It was challenging.... and fun!

Afterwards, J gave each of us a slip of paper and instructed us to write down one or two of our dreams; something that we would like to see in the future, that would be a turning point in our lives.

Then, we walked over to the main challenge: O.D.T. ("Out Door Training). The madrichot had prepared a "rope bridge" -- two rows of rope, strung across four trees. With our feet on the bottom rope (approximately 1 meter above the ground), and our hands on the top rope, we would walk from one end of the bridge to the other (with safety equipment, of course).

I knew it could not possibly be as easy as it looked when the madricha (guide) demonstrated how to do it. Nonetheless, I volunteered to go first. The longer I waited, the scarier it would be for me.

There were three stages of the bridge. At the end of the first section, hung a bottle into which we would deposit the notes with our dreams. We could choose to complete just the first section, or to complete all three stages. I was determined to complete all three stages.

I started all right, using my good leg to lift myself onto the ropes. As I pulled myself along, I felt the bottom rope shaking. I started laughing. L was there, and as I inched along, with the bottom rope shaking all the while, the two of us kept laughing. I felt myself falling backwards; I could not seem to find my balance and stand up straight.

I calmed myself and looked to D for guidance. D advised me to brace my legs. But with my bad hip, I could not lock my knees. When I tried, the stress on my hip was too painful.

I fought to hold back tears. I have always thought of myself as a strong woman, capable of anything. Suddenly, I could not ignore the fact that I had a physical limitation.

I looked D in the eyes, and quietly said "ani mugbelet" -- I meant to say "I am limited", but the Hebrew words also mean "I am handicapped." As I gave voice to the words, I was struck by the second meaning. I suddenly came face to face with a truth I had been desperately avoiding.

I tried with all my strength to complete the first stage, but it was too difficult to hold myself on the ropes. I let myself down, literally and figuratively.

I did not even reach the end of the first stage, to put my note in the bottle.

I could not do it.

I stepped aside and endeavored to compose myself.

J came over and asked if I would like to try again, with her on the ropes with me. Apparently, it would be easier with someone else leading. I said yes.

After watching two or three women complete the task, I was ready to try again.

J went up first; then I lifted myself onto the ropes, again. J wanted to help me with the safety ropes, but I was capable of handling them by myself. Still, I needed more help to stand up securely. Y, one of the other madrichot, balanced the ropes from the other side.

This time, I completed the first stage, and was ready to go on.

Towards the end of the second stage, I seemed to be handling myself much better. Y suggested that I complete the rest of the second and third stages by myself. I agreed.

Almost as soon as Y sailed away down the ropes, I felt my balance shifting. I could not hold myself steady without her assistance. I called Y back. With Y's help, I could do it.

At the end, as I climbed down from the rope bridge, I felt good that I had traveled the entire bridge. But I wanted to do it by myself.

When everyone had completed her turn, those women who wanted, could cross the first stage of the bridge a second time.

I really wanted to cross the bridge myself.

I pulled myself up onto the ropes.

I tried to hold myself steady, to find my balance.

I could not do it. I needed help.

Once again, I turned to Y for help.

With her assistance, I was able to cross the bridge confidently.

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I was the only member of our group who needed that kind of assistance.

I was also one of the youngest members of our group.

I was also the only member of our group with metastasis (as far as I know).

I was also the only member of our group with a physical limitation (with the exception of an older woman, who did not even attempt to cross the bridge).

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As I mulled over my experience, I had an epiphany.

I need not feel embarrassed about needing help. I should be proud that I was able to recognize my limitations and to get the assistance I needed.

Asking for help did not mean that I failed. Rather, my ability to seek the help I needed meant that I succeeded.



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

With love and optimism,
RivkA

Beit Natan Summer "Retreat" -- Part I

I did not have to be persuaded to attend this time.

After such a strong and positive experience at Beit Natan's two day winter retreat (read about it here and here), I was thrilled to attend a one day event in Jerusalem!

I was delighted to see T, my "roommate" from the winter retreat, who came in from Petach Tikvah. She is an amazing woman. She has been living with a brain tumor for over 20 years! (I find that very encouraging)

As we entered the conference hall, we received a small bottle of "bubbles."

Haya Heller, who founded Beit Natan, greeted us. She is a very impressive woman; a psychologist by profession, she is also living with her own challenges (MS). Haya concluded her opening remarks by inviting us to let out our "inner child." Slowly, women of all ages rose from their chairs, and filled the room with the magical soap bubbles.

I did not expect to learn anything new from the first lecture, about nutriciton. I was pleasantly surprised to find the lecture both interesting and informative. Though the theory was inspiring, the practical application was... well, impractical. Healthy eating demands food preparation. Spending a significant amount of time in the kitchen has never been "my thing."

*sigh*

Next on the program, we had a choice of 4 sessions. Originally, three of the sessions were divided by topic and stage of cancer, and the fourth session was in English. I chose to attend the session for women with advanced cancer. Unfortunately, in the end, none of the sessions were determined by stage. Since the groups were random anyway, I decided to attend the group in English.

I was the only woman in that group (with the possible exception of one), with metastasis. During the introductions, three women shared that they were rejecting conventional treatment and choosing to treat their cancers solely with "alternative" methods -- I found that very disturbing. I do not dismiss the benefits of "complimentary" medicine. But I cannot fathom how someone can choose a path that is likely to lead to metastatis.

The session was lead by a "narrative therapist", who invited us to interview cancer. The fascilitator and another participant played the the roles of cancer cells. I watched as the women asked: What do you want from us? Who are your parents? How can we get rid of you?

As the "cancer cells" answered these questions, I felt increasingly alienated. I do not relate to the approach that "cancer is caused by worry and stress" or "cancer is a gift." At the root of these attitudes is the idea that we can control cancer, that if we can learn what we need to learn from it, then the cancer will go away, or not come back. Not only did I feel the session was a waste of my time, it was actually disturbing me.

I decided leave and find a different session.

I joined the session "Speaking with Ourselves and Our Loved Ones", led by the facilitator of my support group. The women were talking about communication, and the difficulties in talking about cancer, with our kids, husbands, and friends. It occurred to me that I can easily talk about the technical side of cancer (test results, treatment plans, etc), but that it is far more difficult to talk about the emotional issues (having cancer forever, being a mother with cancer, fears of dying, etc).

Towards the end of the session, we were asked to write a letter, to ourselves or a loved one. I knew right away that I needed to write to Moshe, and that I would share the letter with him. I want so much to find a way to talk about the emotional issues without being swallowed up by them.

When the session ended, I felt strong. I knew that I needed to talk with Moshe, and that I would find the courage to raise some of these issues.


(Click here to read Part II)


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

With love and optimism,
RivkA