Chemo Begins - I prepare for side effects

May 5, 2003

Cinco de Mayo

Last night was a cry night.  I gulped and gasped.  Felt a bit like crying early in the day, but wanted to develop a more positive attitude, wanted to enjoy feeling good.  And I did, all day.  Last night’s crying jag was brought on because I really was feeling afraid, feeling alone, feeling like wouldn’t it be nice if Bob could just hold me.  Hold me like he could protect me from this.  I know he can’t, but a little pretend is not so bad.  I tried all day to have some time with him.  But, I guess he is used to Sundays alone and really was not motivated or interested in time with me.  By the end of the day, by the end of the many requests and hints I just blew up.  I feel sorry for him.  He has been able to elude understanding all these years.  All I wanted was some compassion.  All I ended up doing was pushing him away and, actually, wanting him to be away so I couldn’t have these expectations and hurts.

I am truly scared.  I am taking the route of destruction.  How much can my immune system (and other systems) withstand?  It just has to be tougher than the cancer.  They don’t know about this cancer.  There is more than one breast cancer.  They treat them all the same, hoping that the shotgun and overkill will work.  The “alternatives” on the other hand strengthen the body so there is no room for illicit cells.  That’s why I’m using both.  It’s like a lawn.  Use chemicals to rid the lawn of unwanted growth, then fertilize like crazy so there is no room for re-growth of the unwanted foliage. 

May 6, 2003

So, the first chemo treatment:   Went with a belly warmed by my favorite sandwich – veggie from Iron Horse in Rogers, shawl for warmth, tape of Swami Beyondananda (laugh out loud funny), visualization tape, journal, book to read, and water.  It went very well.  I spent 4 hours for a thing that was supposed to take about 2 – ½ hours.  It was a failure of the clinic to communicate with the nurses in chemo section that I was ready to go.  Aaaah, well.  That kind of kink is much easier to tolerate than some of the other glitches I have experienced.  I sat in the recliner in Supta Baddha Konasana which probably kept me relaxed but was more comfortable than anything else, the recliners are too soft.  Maybe I will bring in blankets and bolsters to set up Supta Baddha Konasana on the floor when I move into the longer duration IV filtrations (Taxol).

The really good news is that they are serious about nausea control.  Since that was one thing I was really, really dreading I am ecstatic.  They have given me antinausea medication that I take regularly to help keep the nausea at bay as the IV antinausea meds begin to wane.  The IV meds include cortisol which has me feeling quite good tonight, nearly manic.  I am super girl.  They tell me if all the meds fail to control the nausea and I throw up, call the clinic and go in for IV control.  Whoo-hoo.  They (and I) do not want me bowing before the porcelain god for hours at a stretch.  This is really good news.  The doctor said to take Compazine regularly beginning tonight and augment it with Zofran if Compazine did not do the trick.  The nurse said to begin taking both regularly, alternating doses and to even set an alarm and wake in the night to take an extra dose of Compazine.  I’m going for the strongest instructions.

I saw 2 people I know from the exercise center.  One says she will bring some hats in for me.  It was a positive conversation even though she says this is her third bout with cancer.  My heart breaks for her.

Have 2 doctor appointments tomorrow.  A follow-up with the surgeon and I’m meeting with a Naturopathic Doctor.  I really like the lawn analogy for my strategy.  For a beautiful, lush lawn without unwanted plants we apply a poison that will destroy the unwanted plants while it doesn’t phase the grass.  That’s the chemo and radiation.  Then, the gardener encourages growth of the grass, makes it thick and lush, so there is no room for the unwanted plants to grow.  The “alternative” “natural” methods I use for my immune system and health are that second stage.  We do this again and again until we get the lawn we desire, until I get the health I desire with healthy cells which are strong and have no room for the nonfunctional unhealthy cancer cells.

I wonder when I will be able to get to sleep tonight.  I’m more wide awake than I can remember being in such a long time. 

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May 7, 2003

Meg Rom, a long time cancer survivor, sent me flowers yesterday.  Today when I thanked her she said they were to “celebrate” my first treatment with me.  Sweet.

Still feeling great.  Still a very good appetite.  A little sleepy today.

May 11, 2003

The week was a wash.  I worked about 4 hours a day.  I was able to meet most commitments until Saturday.  Yesterday was the worse.  I finally gave up trying to do.  Besides the ever present nausea (like a rock in my belly) there was the leg pain.  My legs ached all the time.  Today they don’t ache so much but are definitely sore to the touch.  Gee, I get to experience something that I have heard from no one else.  So, Saturday I cancelled most everything and slept until about 4:30.  I watched a movie with Bob then went to sleep for the entire night.  I just want to sleep all the time.

Had acupuncture with Patrick on Thursday.  I told him I felt sleepy so he said he would work on the spleen and get some energy up.  It was after that I began to feely like I needed to crawl out of my skin.  I don’t think that was the treatment I wanted.  I think I would rather have been sleepy and dealt with that. 

I’m thinking that I should not plan on working at all the days following chemo.  I received an email with “deep thoughts” in which one was “You are not what you do, you are not how you make a living.”  Well, actually that is what I have become.  Before I began teaching yoga I could say that I made a living so that I could be free for vacations with my family and to be able to learn more about yoga.  Now, my life is wrapped around yoga – and that is how a I make a living.  Confusing.

At any rate, I did not have the energy this week to accomplish self-care.  I could not lie in restorative postures as I would just lie and fidget and want to get up.  I didn’t have the energy for any other posture.  I was unable to sit up for visualization or meditation.  Mainly I slept every free moment I could. 

I don’t smell as bad today.  I have smelled bad (to myself anyway) since the first surgery.  I believe I smell the dexamethasone through my pores.  That was used as an anti-nausea agent in both surgeries and with the chemo as well.   It is a peculiar odor.  I am wearing essential oils to feel better.  I began shaving my armpits and that helped - nothing to catch the odors.  It’s still difficult to shower or bathe as I must face my changing image.  I know, it’s not much changed, but it’s still a factor.  I must work with scar tissue and tissue not healing as quickly as I would like.  Yesterday and today my lumpectomy scars are more painful than they have been.  I wonder if it’s a change in the healing due to the chemo or if it’s because I have not been as religious in range of motion exercises.

How can people not lose weight on chemo?  Food is a trial.  I eat just because I think it might help my nausea.  Food has long lost its appeal and now is worse.  I have found this week that my favorite food is cheese and saltine crackers.  It is soothing.  But, I eat yogurt hoping that the bacteria within will help me.  I’m wondering if taking so much medication was the right way to go, or if it kept me feeling better than I would have felt?  What answer is there?

After blowing up at Bob last week I received some advice from one of my counselors.  When asking for something be very specific – something you can take a picture of – isn’t that just the most clever?

I went to the Cancer Support Home and borrowed a hat, a wig, a turban and a couple of scarves.  Missy and I went to Spinning Star and bought fabric for many scarves.  Our favorite is the chemo kitty fabric.  It has comics of cats with many wearing bandannas on their heads.  The owner gave me a length for my “dress – up” scarf.  It’s very pretty.  My job is to treat the fabric and get ready for a wine and cheese scarf hemming party next week.  Though Thursday I wasn’t sure I would be able to meet that deadline, it’s becoming more reasonable.  Today will be a good day.

I went for a walk yesterday.  It wasn't easy, but my breathing continues to improve.  I have the proof of the spirometer.

Today is Mother’s Day, the first without Mom.  Speaking of “deep thoughts” earlier, it reminded me of sitting in Mom’s memorial and the funeral home had made a videotape of the pictures we brought.  We all snickered right away because it was just like Jack Handy’s “Deep Thoughts” on Saturday Night Live.  There’s just no reverence in the world.  But, I know Mom would have laughed, too.  It’s too bad she’s not here.  I would have loved her and Dad’s support.

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May 12, 2003

I called Aunt Marilyn tonight.  I had meant to call her on Mother's Day.  But in the end I thought it would be too emotional for us both.  She has lost 2 ( her only 2) daughters to breast cancer.  I called to tell her how much it must have meant to my cousins to have her support, even though it was hard for her.  My father's side of the family is great for appearances.  They delightfully hide truths to make everything look shiny.  Marilyn right away asked if my sisters knew about my diagnosis.  I flashed to how nearly everyone in contact with me knew, sort of laughed and told her I called them the same day.  She said if I needed her to come and stay, just ask.  How wonderful.

May 13, 2003

So, feeling quite well today, as the day wore on, better and better.  Saw Dr. Beck.  Of my problems there is some help. 

The nervousness and sleepiness was probably a reaction to the compazine.  We will either half the compazine dose or go only with Zofran next time.

The leg aches, back aches, and achy wounds he says my just be my chemo gift.  Though he says using advi/motrin is perfectly fine.

My hemoglobin is not low enough to warrant intervention.  But, Doc says that adding ferrous sulfate to my supplement list is a good idea.

Pimples I must live with.

The nurse had problems drawing blood from my port.  She says it’s not uncommon.  Still, it was disconcerting to flush and draw, flush and draw.  It was a different flavor of missing veins over and over again.  I stood up, sat down, raised my arm, lay down.  Finally, when we were about to give up, there it came.

Doctor says I will lose my hair one day after I see him next week.  Prospected hair loss:  next Wednesday.

I have lost some weight.  Actually, I don’t mind losing some, I was plenty chubby (fat).  I really don’t see how anyone can gain weight.

The Technicolor bowel movements were reflecting the liver throwing off the chemo drugs.  I’m wondering if the liver series is warranted for a couple of days after the chemo.

With the adjustments to treatment and if my body recuperates well between treatments it could be that the first is the worst in terms of chemo treatments.

As I was standing on line with yoga students at Iron Horse for my favorite veggie sandwich we were talking about when I would lose hair and that often hair grows back different from original.  A man on line (with a fine head of thick hair) said, “It grows back, better than before.”  He talked to me at the coffee carafes.  He told me it took him 6 months after the last treatment for his hair to be back completely.  I will be a year without hair.  But, then, maybe it will be prettier.  I really had no complaints with what I have though.

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