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Tuesday, December 2, 2008

Medical Update: Day 1 -- Taxol

I was noticeably anxious.

First, I overslept. I wanted to arrive early, and instead I arrived late. (It was not that bad, we arrived at around 9:20, instead of our usual 9:00)

Then, the nurses told me (and my doctor) there was no way that I could receive both Taxol and Herceptin on the same day because I would be there for over 10 hours (the oncology day ward is not open that long). I would need to take one drug today, and another tomorrow.

Great. (Not)

Today was the deadline day for taking Herceptin without a loading dose. Nevertheless, the nurse who handles prescriptions (who I highly respect) recommended starting off with Taxol, so there would be a full week in between doses. The doctor agreed with her logic, and thought the difference in waiting one day for Herceptin was insignificant.

The doctor explained that the delay would not negate the affect of the Herceptin; at most it would take longer for the Herceptin to build back up in my system. My concern was that the delay might affect our ability to evaluate the efficacy of the drug. I was especially unsettled because the Herceptin is being paid for by private donations, and I am highly sensitive about not wasting someone else's money.

The deliberations made me even more anxious. My doctor left the final decision was up to me; we would do whatever made me feel most comfortable. I did not know how to decide. Moshe suggested that, since I am not a "bureaucratic statistic," we follow the doctor's and nurse's instincts. I felt really stressed about the decision. The doctor looked directly at me, and gently suggested I relax. I looked right back at him and said "I am very anxious."

"I know," he responded, softly, "Relax. It will be OK."

He did not diminish my concerns. He acknowledged the many facets of this issue, and gave me the space to choose whatever path I preferred. I focused on my breathing and agreed to take the Taxol first.

When I went to open my port, the nurse took one look at me and asked "where is your smile?"

Afterwards, when I went to wait with a cluster of the "regular" ladies, there, too, several women asked me what is going on.

I did not realize my feelings were so easily displayed on my face.

I have been coming to chemotherapy for almost a year and a half. I often receive heart-warming comments welcoming me. After not seeing me, during the chagim (holidays), one woman told me that she really missed me, that I am like a ray of sunshine.

Today, when everything weighed so heavily on my shoulders, (the finances, starting a new drug, the overall uncertainty), I finally understood that I really did bring joy and laughter to the chemo ward.

One of the nurses came to tell me that I would need a bed. The head nurse had told me that last week, so I already staked out a bed when I first arrived. (another reason I wanted to get their early was that I know that beds are often taken quickly, and I did not want any hassles. "The early bird gets the worm" and all that... Thank God, there were several beds available when I arrived. I was even able to choose a bed in a room with two other women). The nurse hooked me up, and led me to the bed.

I was getting the first of three medications to prep me for the Taxol. The first was Fenergan, a super-duper antihistamine that totally knocks you out. The second was something to protect the digestive tract and the third was something to prevent nausea. Only after these three infusions would I receive the Taxol.

I had brought a book, but realized that the Fenergan made it impossible to concentrate on reading. I noticed a TV, thought I would watch for just a bit, to relax. The sound was off, as Moshe adjusted the TV channels. When we found a program I liked, we discovered there was no volume, even when Moshe raised the volume to maximum. We tried to find a program that I could follow the Hebrew subtitles (not easy for me, at all). When Moshe flipped through the channels again, we discovered that some of them did have sound, and maximum volume was LOUD!! Moshe immediately lowered the volume, but not fast enough! My roommates started yelling at us! (So much for relaxing!) We apologized profusely, as Moshe continued to mute the TV. Then, slowly, Moshe started raising the volume. At that point, one of the ladies (the daughter a patient), started yelling again! She needed complete quiet so that she could study! Moshe was even more taken aback than I. Very quietly, he asked me to ask a nurse to deal with this. When I related what happened to the nurse, she insisted that patient's needs come first. So Moshe raised the volume just barely enough for me to hear. The woman then started talking loudly with her mother, but I couldn't understand what she was saying since they spoke in Russian. It was probably better that way. (What was that about relaxing?)

I waited for the room to quiet down (I realized that if I raised the volume, they would just talk louder), when one of the volunteers from the Yuri Stern Foundation came in to offer me a massage (reflexology). By then, I was already feeling slightly woozy. When I started to get up, to go into the massage room, she said she would treat me in the bed I was in. Yeah.

We spoke a bit, before she started, and the subject came up about my teaching swimming. I could feel myself transform, just talking about it. The tension left my shoulders and I smiled. I could feel the spark return to my eyes. After a few minutes, she and I smiled. I could feel the spark return to my eyes. After a few minutes, she left to get her things.

She came in, closed the curtains and turned off the TV. It was so nice.

I was just starting to drift in and out of awareness, when my doctor came in. We spoke briefly, but I was already on my way "out." My speech was slow and it was difficult for me to focus. Thankfully, I did not have many questions.

The doc left, the massage ended, and I drifted off to sleep. I slipped in and out of sleep for the rest of the day.

My friend came around 2:30. I cancelled our "chemo date" because I was told that the Fenergan would put me to sleep. But she still came to pick me up and take me home. I finished around 3:00 and was home by 3:30.

I ate a late lunch with my kids, then collapsed back into bed until dinnertime. After supper, I thought I would just quickly blog something, then go to sleep. ("The best laid plans...."). I had two, separate, meaningful conversations, one with Moshe and one with Y. Both talks were really worthwhile, though my talk with Y was particularly special.

The Fenergan must be wearing off, because I am starting to itch. I'm still tired....

It's time to go to sleep.

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

With love and optimism,


Anonymous said...

selfishly I'm glad you had energy to post as I want to call but a bit afraid the timing will be bad. I too like all your buddies look forward to hearing good news. Funny about the "roommates" - even Israeli weirdness enters the hospitals.

love you and cheering for you always

Anonymous said...

Hey there!
I don't know who u are but i jus wanna wish u lots of hatzlacha and may Hashem spare u the pain and nastiness of it all!
: )

Daveda said...

Rivka - It has been a while since I commented on your blog, but I am a regular reader. I wish you lots of strength and calm as you as such an inspiration to everyone. You are always in my tefillos and I pray that you respond well to these treatments.

All the best, Daveda

RivkA with a capital A said...

Klara -- to be accurate, they were more Russian roommates than Israeli roommates. But they are not typical. Most of the cancer patients are really very considerate.

Anon -- I don't know who you are either, but thanks for the well wishes! :-)

Daveda -- always happy to read your comments and receive your blessings. thanks!

Engineering Goddess said...

Hi there, my husband irritated a chemo patient one time because he fell asleep next to me in one of the chemo lounge chairs and started snoring horribly. I didn't really notice because I am used to it, but this other patient was feeling sick to his stomach and the snoring did not help. I poked my husband and told him "no snoring you are bothering other patients" and after that he never fell asleep again when I had chemo! Too bad, the nurses and I would poke fun at him while he was asleep. :)

When I had Taxol they gave me Benadryl and I would drift off into a semi-sleep state like you described. It hit me before they finished injected it into my IV though and I'd wave to my husband and say "night night" and then get extremely quiet!! LOL