And then there were six....

Sometimes, I feel like I have been dealing with cancer for years.

It is hard to imagine that I am only two years into the game.

In the beginning, I was desperate to find other women who have been living with cancer for ten years or more. I needed to speak with real live women who were beating the odds.

They exist. And they are amazing.

One of the women in my support group has had cancer for 19 years. She still works every day. She has married off all four of her children, all of whom were little kids when she was first diagnosed. (One of her sons, and his family, lives down the block from me.)

All of the women in our support group are still very active. We are all busy women who also happen to have cancer. Cancer is not what defines us, even though it is our common denomenator. There is vitality in our group of vibrant women.

Our group has created a "safe space," filled with faith, hope and optimism, despite the fact that we talk about our inermost feelings and our deepest fears.

Currently, we are in the middle of a 4-5 part series with a psycho-oncologist whose specialty is parenting. Many of us felt the need for several sessions focussed on issues of parenting.

I constantly wonder about my childrens' behavior -- how much of their behavior is "regular adolescence" and how much is affected by cancer?

This past Sunday, we gathered early, to talk about the recent passing of Pia, one of the members of our original group. When I arrived, I learned that another woman from the group, B, just died this past week (She only came to our support group once or twice, but I met her in the hospital on several occasions, and other women knew her from previous groups/events).

Within the first few minutes of our discussion, I learned that a fourth women from our group, Tz, had died almost two months ago. I did not know.

I was caught off guard and did not know how to process the information.

When I commented on the fact that four women from our group had died already, I was corrected. ("What? You did not know?" ) Apparently, Y died a while ago too.

I did not know.

How could I know? I did not ask and nobody told me.

I wish somebody would have told me. I did not like finding out this way.

All of a sudden, I was faced with several deaths.

I know that in many ways my situation is different. That does not change the facts.

In less than two years, five women from our support group are no longer with us.

Six of us are still here.

Five of us still meet regularly, at our current support group. (the sixth lives in Dimona, over 3 hours away)

Four of us meet almost weekly, at Sha'are Zedek, where we get chemo on the same day (the fifth lives in B'nei Brak, as does another women who has been part of our group from the beginning of this year).

Three of us have the same oncologist.

Our lives are all intertwined.

These women form such an integral part of my life. I see them, and speak with them, more regularly than almost anyone else. We share intimite details of our lives. We seek advice, comfort, and support from each other.

I do not want to consider the possibility that we will not all be here in another two years.

This week, three more women joined our support group about parenting.

Once again, we are a group of ten.

I cannot help but wonder who will still be here two years from now.



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

With love and optimism,
RivkA

No Chemo for YOU! NEXT!! (medical update)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can't live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today's treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said "wrong."

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go....

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!



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

With love and optimism,
RivkA

Uncertainty

So, if there is one thing that I am learning as a cancer patient, it is to recognize that I cannot control everything.

For the past 6 months, my markers have been steadily rising and my pain has been increasing.

After months of tests, scans, deliberations, and sending me for a second opinion, my oncologist has determined that this particular drug combo is no longer working.

I went in for chemo last Sunday, and my oncologist sent me home.

Well, not right away. After my blood test, we sat with my oncologist for about half an hour, discussing options. Both he and my second opinion oncologist (SOO) recommend staying with Herceptin and switching to Taxol. There is uncertainly about whether or not the health fund will approve the change (Herceptin is very expensive, and the health fund might insist a change of both treatments).

Xeloda, which is similar to Taxol, but less toxic, might be a "nicer" drug for me, but both doctors recommended "using up" Taxol first. My SOO suggested saving the Xeloda for use with the drug we will use when the Herceptin stops working. And my oncologist pointed out that I am only available for a particular study if I have already used Taxol. Moreover, the health fund will not approve the use of Xeloda before Taxol has been used.

My oncologist suggested I try to get into a study that would fund Herceptin and Taxol. But that study would make me ineligible to continue with the bone drug study, and I want to stay with the bone drug study.*

We also discussed the side effects of Taxol. I will probably lose my hair. (Want to know how I feel about my hair? Read this) I must admit, I have grown accustomed to having chemo and hair. I do not really want to start down that road now. I do not want to look sick. I will also probably suffer from neuropathy (a tingling of the fingers and toes, sometimes accompanied by a loss of dexterity). That really frightens me. And I might become very tired again. That does not excite me either. I took some deep breathes, and tried very hard to stay calm (read: not cry).

We walked out of his office with a letter to "send immediately" to my health fund, requesting the new chemo (Taxol).

I updated one of the nurses, with whom I am particularly friendly. She informed me that if you have to drop out of a study, sometimes the company will still pay for you to continue receiving the trial drugs. So that, if I need to enter a new study, perhaps I can still receive the bone drugs. (good to know). After she removed my "port" (the needle and tubing that connects my port to the IV), she suggested that I ask the secretary to fax the letter to my health fund, and wished me luck.

I faxed the letter, then my friend drove me home.

A few hours later, my oncologist called.

"Don't send the letter yet," he instructed.

"Too late," I told him, explaining that we had faxed the letter before we left the oncology ward.

"What's going on?" I asked, perplexed.

"Your marker are down," he answered, just as perplexed.

After rising around 20 points every month, for the past six months, my CA-125 marker suddenly dropped 54 points (from 170 to 116). My CEA marker also dropped (from 3.6 to 2.6).

"What does that mean?" I asked, searching for understanding.

"I don't know," he answered honestly, "I wanted some extra time to think."

So, we waited for the PET scan results, hoping they might shed some light on my situation.

He got the report yesterday (Sunday). There is nothing new on the PET scan, it only shows bone lesions. GOOD NEWS for me!! But not at all helpful in determining treatment (though now I am ineligible for that new study, since bone lesions are too difficult to measure, and no other tumors are evident at this time).

I went in on Sunday to test my markers again. No further news yet.

So, here I am, the night before chemo, and I do not know what chemo I might be getting or if I am getting chemo at all.



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

With love and optimism,
RivkA

*I am either getting Zomera or a new drug called Denosumab. Participating in the trial is a win-win for me. The Zomera is the next generation drug of its kind, and is not covered by the health funds. And the Denosumab is a new drug which is not even available on the market. So, either way, I'm getting a better drug than I would have gotten had I not been in the study.