Questions Continue - Taxol Begins - Better and Not Better than Adriamycin

July 26, 2003

It's unbelievable.  I knew I had not been writing in my journals but I hadn't realized how much time had passed.  Since the last treatment I have been amazingly tired.  I have kept up my work schedule but with great effort.  Any time I was not at work or with healthcare support I was asleep.  Literally.  I was unable to beat myself into anything I believed might add some energy.  In my opinion, my diet was good.  This only because I found some raw vegetables that I munched on whenever I had enough interest to eat, about twice a day.  Often I would be hungry but too tired to eat. 

But yesterday that ended.  I was discouraged that I didn't start the sense of higher energy earlier in the week like I had the previous treatments.  But yesterday was great.  I began smiling and haven't stopped.  Someone mentioned, that yeah, my energy was up, just in time for another treatment.  True.  Something like I would say, but not this week.  I just can't think about it.

However, it was brought to my attention that there is danger in the drug Taxol, that it has been shown to be carcinogenic.  Perhaps I should research some more before Tuesday?  All I can find is the information about the company that developed and sells it.  There is a class action suit being organized against the company for overcharging, an anti-trust issue.  Now, I could decide that I don't want to do business with a company with no morals.  Problem is that I am sure I do that on a daily basis.  Right now I am concerned that the medication does what it is supposed to do.  I have to ask questions then make a decision.  As long as I believe in my course of action I will be healthy.  We have no guarantees.  I must do what feels right for me.  It usually doesn't help to have someone second guess a decision that I have deliberated and sweated over.  I, and anyone making a tough decision, needs comfort and total support.  Worry, anxiety, fear - not useful. 

I have faith in my doctors, all of them.  I love being informed.  Being informed, however brings more logical evidence to the table, conflicting evidence.  Because of this I am often just a bit unsure.  I am clear about what outcome I want, but there are no guarantees.  Each treatment, whether medical or other, is still research in progress. 

July 27, 2003

Last night I dreamed that the hair on my head had grown back.  How wonderful, I thought in the dream, to regain my hair while still on chemo.  I have very little hair now.  What I had shaved is not growing and other hair is dropping.  I look more and more alien (as in ET).  Would be great if I were a competitive swimmer.

July 29, 2003

Time spent at the clinic was 6 - 1/2 hours.  The benadryl I was given to help with any symptoms of a possible allergic reaction caused me to be very jittery.  So I was given ativan.  I am somewhere mind and body wise, but it's a place I don't know.  Possible side effects include achiness.  For this Dr. Beck suggested beginning to take the amino acid glutamine beginning today.  He is also prescribing a pain killer, but maybe the glutamine will do the trick.

Talked with Dr. Beck about my findings about Taxol.  The negative information I found was only about the politics of distributorship.  It looks like the company is behaving a bit more reputably now.  He says that this is just a wonderful cancer fighting drug.  I must place my faith where it feels best, Taxol it is.

Told Dr. Beck my hair dream and he said that sometimes hair will begin to grow back during Taxol treatment. 

Today feeling drugged, but in a good way.  I think the Ativan had a nice calming effect.  They will probably reduce the Benadryl next time and I will be more normal.  For whatever reason, feeling calm and hopeful.  It has been a good day.

August 1, 2003

I knew I forgot to mention something important:  during my treatment, while trying to reduce the effects of Benadryl, my nurse suggested that a walk would help.  I asked her if a walk outside would be okay.  Yes, that would be good.  I took my IV pole and headed across the parking lot, across the street, to the new hospital where there is a fountain, a reflection pool and a labyrinth, which I walked.  It was great.  By the time I got back my nurse was a bit concerned.  They may not give me permission for walks outside again, however, I believe that taking a walk while infusing (if you have the energy for it) is a great idea.  It gave me a positive sense of treatment. 

Taxol causes pain - myalgia and arthralgia.  At first I felt pain in old injury sites, joints and scar tissue.  The pain spread until my whole body ached, but not all the time.  It seems bearable, it is bearable, but is certainly not restful.  Perhaps the Glutamine helps, but last night I would not have slept if I had not taken a pain med as well.  Which turns out to be a good thing.  Today is the first day in quite some time when I did not feel like sleeping through a large part of the day.  I can actually say I had some enthusiasm for my activities.

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August 6, 2003

My energy level is just great.  I'm loving the change to Taxol.  There is pain, but it's much more tolerable than the fatigue and lethargy of the other drugs.  Last weekend attended a yoga workshop and had fun.  I wasn't able to participate, except a few poses and note taking, but it was great meeting new people, seeing old friends, and talking about cancer only just a little.  There was so much else to talk about.  I need to have more fun.

Rats!  Read the criteria for who is a candidate for Accelerated Partial Breast Irradiation.  Not me.  It would have been so much better, 5 days vs 7 weeks.  To be a candidate one must:  have a tumor size in Stage 1, < 3cm  (I am Stage 2-3, but less than 3 cm); no nodal involvement (3 positive nodes for me); no metastatic disease (nodes, I believe count as metastases) ; age > 45 years (I'm there); EIC negative (my tumor is estrogen positive); and DCIS - negative margins with adequate excision of tumor (my margins were adequate, however close to the skin).   Oh, well.  If I continue to feel well with the Taxol and with the month off before radiation, I can go into that treatment period feeling pretty good at first.

August 7, 2003

It's great feeling so energized.  But there is no break, no allowing to forget.  I have sores on my tongue.  I smell the chemo aroma.  Still, it's so much better being able to create and actually check things off of a To Do List.

August 8, 2003

Yuk !  Hit the wall yesterday.  I was supposed to help host the yoga workshop last weekend but played a minor role in that regard (who knows what I will be capable of one week to the next).  But, even what little I did added onto a a hectic week before and after. . . I hit the wall yesterday.  Yesterday afternoon I, very quickly, got to the point where I felt I could just not do one more thing.  The pain accelerated and the sores on my tongue are ever present in my mind.  Once I got home, I sat down and stayed down until I went to bed early.  I hurt all over.  It was like having exerted myself at a particularly athletic challenge.  Just overdone.  Today I feel a bit better, but still want to take it easy.  The pain has reduced to a level where I no longer want pain medicine, but the sores on my tongue are phenomenal. 

I'm glad I made the most of the time that I felt well.  Last night I was depressed.  Today I'm beginning to build up once more.

August 10, 2003

How dumb I can be.  The blisters on my tongue.  I kept thinking they would be better the next day.  Today I woke up with the whole front of my tongue on fire, my throat is sore.  I couldn't talk because it hurt so badly to have my tongue hit my tongue.  The good news is that my sister and brother-in-law had read my entries here and called last night.  My brother-in-law is my dentist.  I haven't found a local dentist yet.  It seemed like a kick.  For a year I would go to St. Louis to get my hair done and to Ohio to see my dentist.  I have found a hair dresser (who I don't need) but no dentist (who I do need).  They called to offer to call in a prescription that would help with the sores in my mouth.  They called my drug store last night.  This morning I was able to fill the prescription and tonight the pain is bearable as long as I don't talk or chew.  It's like having a mother, these caregivers of mine.

August 12, 2003

Huge blister on my tongue.  With the Magic Mouthwash compound from the oncologist, the steroid dental paste from the dentist, and pain medicine I have about 3 good hours in the day.  It's difficult to talk as the blister is right on the front of the tongue and hits the back of the front teeth often.  I cannot eat.  Swallowing liquids isn't pleasant.  But I am keeping hydrated and gaining nourishment through supplements, liquid chlorophyll, liquid meals, and vegetable juice.  Otherwise, things couldn't be much better. : )

August 16, 2003

So great.  Tongue sore hurt so bad until Friday morning when it healed about 85% over night.  Friday (yesterday) morning there was hardly any pain and it was visibly smaller.  Today there is only pain when one small place on my tongue hits a crooked tooth that juts out towards it.  Miracles how things come and go so quickly.

This evening was one of depression, sad.  I don't know.  I guess because I'm so tired today.  Not sleepy tired, weak tired.  That and having the chemo smell noticeable.  Reminders of where I am in my life, the surprise/incomprehension at hearing my diagnosis nearly 4 months ago.  Another odd thing, the chemo odor just comes and goes.  There seems to be no pattern. 

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