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    Friday, April 13, 2007 11:58 AM, CDT

    The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering.

    This is great. The first half is supposed to be the worst, and this is it. Smooth sailing now? !!

    I didn’t get outside yesterday, it was cold and windy. Lovely out today, though. Time to putter in my garden, just a bit!

    Spoke with my family in Seattle, and the kids are having a fabulous time. Martin is with his second cousin, Damien. Those two have been fast friends since they were 3, and no matter how much time passes, they meet again as if they haven’t skipped a day. This left Felicia with Auntie Andrea and Uncle Paul all to herself. Her Royal Highness had a manicure and pedicure ( she described her blue toes with flowers on them, with great glee ), sushi for dinner, and then dessert at the famous Dilletante Restaurant (it’s all about chocolate… and such chocolate!). Today Felicia is with Grandma Anne, perhaps going on a ferry or some such adventure.

    I spent yesterday lounging, reading “The Other Boleyn Girl” (thanks again, Andy!) and reveling in my good fortune to be feeling so relatively well.

    Never will I take my health and energy for granted again! When I am through with chemotherapy I will gleefully fill my body with all the nutrition it can hold, and spend my energy in celebration of health. While I am on chemo, I cannot take herbs, or large amounts of antioxidants, because chemo is believed to work best in an oxygen rich environment. When chemo is done, my body is mine again!

    Then, after surgery, the cancer will no longer be my constant companion. It is hard, living with it, feeling it in my body, always aware of the size of it, even as it shrinks. I am so looking forward to Dr. Metkus wrapping it up in a neat little package and taking it away.

    Today I am going to ignore it, because it’s days are numbered, and I’m halfway through the worst. Thanks Steve, for getting pictures of the rugrats on my website, and for calling me every morning on your way to work. It starts my day right, rain or shine.

    Love and Blessings,
    Elizabeth

    You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you.

    Chemotherapy at first struck dread into me, thinking about what it would do to my body.  I wanted to do the things I had always done, to try to minimize the harm and keep my body in balance throughout, at least as much as I could.

    Wrong!

    Chemotherapy is a wild, crazy wave, and my job was to ride the crest of it until it broke.  Certainly I wanted to protect my healthy cells, but I wanted those chemicals to knock the %*@!! out of the cancer that was threatening my life.  It was a battle for control of my body.  It was a game of chicken between those purple ewoks and wookies and the angry little bald man.  My body was the stage for this drama.  Never mind balance, that didn’t apply here!

    I understood that uninterrupted treatment was the key to my survival.  By the fourth infusion, I finally understood that to stay on that wave I had to be as comfortable as possible.  Steroids with the infusion, ativan at night.  Pain killers, anti nausea medicine, laxatives, stool softeners, all my normal bodily functions had to be slapped around to keep me on that wave.  I had a vicious cancer, and one delayed treatment for whatever reason would give it a chance to bounce back.

    When I finally understood that this was the way of it, my strategy became very clear.  Stay on the crest of that wave, don’t fall off, support my body under the onslaught, and let every ounce of energy I had be harnessed to assist the treatment.

    The first big breakthrough was, pain and discomfort leads to stress, which weakens the body more.  By the fourth infusion I was taking all the meds they gave me, at the first hint that I might need them.  The more comfortable I was, the more my body could use the energy I had to fight the beast.

    I conserved my energy for the same reason.  I did things I loved, like walking, improv, reading, puttering outside.  Things that were an energy drain I declined, and people who were toxic to me I kept out of my space, sometimes with help from others.

    I said yes constantly, as I have discussed in another post.  When people wanted to pray, bring food, take care of my children, or tidy my home, I welcomed it all.  I also said no, just as consistently, to anything that would use my precious, limited energy for something that was not important to me.  Saying yes opened my heart.  Saying no taught me to trust myself.

    I used complementary therapies to minimize side effects, and to protect my healthy cells as much as I could.  I used imagery to protect my heart, to watch the tumors shrink, to build white blood cells and hemoglobin.  I never had to miss a treatment because of low blood counts.

    Dr. Brown told me to “eat what looks good to you” and I did that.  I also developed my once a day nutrition shake to make sure all the bases were covered.

    I took advantage of every resource.  My colleagues gave me massage weekly (I remain so grateful for this!), I received acupuncture, and I had a Healing Partner who provided Healing Touch for me every week for 6 months.

    I wanted to be sure I was really showing up for all this.  I wanted my whole being to know that I was engaged in my life, that I was passionate about it.  I took advantage of the counseling that was available at Healing with Hope.  I blogged like mad at Caringbridge, and celebrated life.  I painted my room purple.

    Do you have to do all this to weather the chemo storm?

    No, not at all.  Do it the way you do it.  Just keep three things in mind, if they seem good to you.

    1. Use all the medications they give you to be comfortable.  This is not the time to be stoic!  A comfortable body heals better and faster.

    2.  Do the things you really love with the energy you have.  That way you actually get some.

    3.  Let people help.  It blesses them just as much as it blesses you, if not even more.

    If this is you right now, know that my thoughts are with you, and you will get through it!

    Here is the continuation of last Saturday’s post. As you can see, there was a crash!

    Wednesday, April 11, 2007 5:45 PM, CDT

    later….

    blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for good measure… I feel truly rotten. I keep telling myself, it’s the last of this one!

    I hope Steve is right, that since the bad part started sooner, maybe it will be over sooner, especially since I may have a less fierce shot tomorrow, and I don’t have my energetic little sidekicks to take care of.

    Thanks so much for caring, everyone. I’m going to take my weepy little self to the sofa, and…

    just got the knock, dinner arrived, thank you Donna, you have no idea what a difference this makes. I have to eat to make the nausea subside, but it’s hard to get motivated. Thank you! I look forward to seeing what’s in the bag.

    And in the mailbox, Becky’s weekly “healing card”. Oh Becky, your timing is impeccable.

    one day at a time…

    E

    Postscript, present time:
    This fourth infusion was in fact the second worst(!), but it was bearable with help. I look back on it and wonder where I would have been without all the wonderful people who helped me. Healing cards once a week like clockwork, others managing my energetic children, food appearing at my door…I often wondered during those times what people did who didn’t have people to help them.

    After this experience I had a new appreciation of how we humans really do need each other, and for how much a difference something that seems small can make.
    The thing that amazed me most of all was that I didn’t have to organize or delegate at all. People did what they were moved to do, and each time it was perfect.

    Now when I am in a situation where I could help someone, I ask, and if they let me, I do.

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    Reading that old Caringbridge entry reminded me again of how grateful I am to my strong, resilient body.  It took such good care of me for so long.  I was under duress for so many years, I really can’t blame my precious body for letting in that intruder.  I met him in a dream, and he was wild.  Not smart, but crazy, aggressive, and scary as hell.  He was in my house, waving a broom to bludgeon me with.  He was only in the front hall.  He hadn’t made it upstairs, into the living room, or the kitchen.  In my dream, I ran outside in terror to get reinforcements.  I knew I couldn’t get him out myself, but I knew that the four men outside would come in and carry him out.

    I had that dream in the morning on the first day of chemotherapy.  I hadn’t had my PET scan yet, but after the dream I was confident that I was safely at Stage III, only locally advanced.  Steve suggested that I attack the wild man with fierce little monkeys.  Always ready to run away hand in hand with my imagination, I decided that I didn’t even want to see the scary bald man with the sharp teeth in my house.  I imagined him in a vast, empty white space, being slowly put to sleep until he was in a coma.

    Then, I changed the image to a beautiful landscape, vast and green, with dozens of little waterways running through it.  Marring this scene was a huge, ugly gray slag heap, with two smaller ones next to it.  As the Adriamycin and Cytoxan entered my veins, an army of busy little purple Ewoks, chattering and busy, marched in and went to work on those slag heaps.  I decided that they needed some bigger, stronger help, so I called in the Wookies.  It was a busy scene there!  They loaded up the mess that came off the heaps into barges, which were carried away.  Every time I had an infusion, there would be a couple of days when my breast would flush, and be extra red.  Then it would subside and the sheet in my breast would feel softer and smaller.  These tumors went from 11 centimeter and 2 plus centimeters to half a centimeter and less than a millimeter by the time I had surgery.  This was the AC.  I came up with different visuals for the Taxol and herceptin when that time came.

    I was of course concerned about white blood cells.  I watched another man get sent home, unable to have his treatment, because his white blood cell count was low.  I knew that I could not allow that to happen to me.  I could not give the aggressive cancer I was fighting any opportunity to regroup and become resistant.  Not one bad cell could survive!  So I needed those white blood cells and I needed plenty of them.

    Oh, they were so beautiful!  I love my white blood cells.  They emerge from the rich brown earth (my bones) and take shape in pairs.  They are strong and powerful, a male and a female sent out into the world of my body to keep it safe.  They look like greek gods, dressed in tunics of white and gold.  They are very tall, and they have wings.  They are noble, and they are relentless.  Any intruder is destroyed immediately with a beam of gleaming light like a thousand suns that comes straight from their hands.  If two of them are not enough, they communicate telepathically to other pairs of guardians, until there are enough to surround the threat completely.  I still to this day am aware of, and grateful to these majestic and fearsome protectors of my body.

    By the fourth infusion, my neulasta dose was cut in half.  When I started Taxol and it was neupogen (a slightly different medicine) I needed a reduced dose of that one as well.

    I met my objective.  My treatments were uninterrupted.  My body stayed the course, and I will always appreciate my body for it’s loyalty and patience.  I admire it so much for not allowing that terrifying breast cancer past my lymph nodes to escape into my organs and bones.  I am amazed and grateful that it withstood years and years of relentless stress before succumbing to a persistent invader.  Even then, my body was still there for me, and I finally learned how to be there for her.

    My beautiful white blood cells are still there, protecting me.

    Wow, what a long strange trip it’s been!

    I started the Caringbridge site when I was just about halfway through my four months of chemotherapy.  I wish I had begun much sooner.  Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I didn’t feel guilty about it because I knew they could check up on me.  On those days when I felt really abysmal, I would look through all the good words in my guestbook and feel better!  Since that first blog, I posted 408 entries totalling 136 pages.  Most of these were written before 2009.  I also had over 15,000 visitors.  Now that’s support!  You can find the link to Caringbridge to the right of the page.  It’s super easy, it’s free, and if you’re walking the tough path right now, it will help you in more ways than you know.

    So here’s a bit of history from the archives.  I’ll publish the good ones as I go through my old journals.  I’m getting ready to shut down that site, to make way for someone who really needs it.

    April 11, 2007

    Well folks, it’s full speed ahead!

    My white blood cell counts are so good that Tim (nurse) is going to ask Dr. Brown about cutting my neulasta shot dose, which will make this round easier for me. Huzzah, 4 of 4 down!

    Today is wierd Wednesday. I always feel strange on Day 1, kind of racy and disoriented, running hot and cold, just odd. But it’s not bad, just disorienting. By Friday I feel rotten, but this time maybe not so bad if the shot is not full strength.

    The infusion went fine. I was blue at first, annoyed that I have to deal with a cold on top of chemo, but then my ray of sunshine arrived (Flo, of course) bearing Jamba Juice, a sweet, buttery goodie and a big smile. That made things better! It got better still. I made a new friend, Avis, who came in for her infusion, took the chair next to mine and beamed at me the way I like to beam at people. She had a friend visit too, and the four of us passed the time in very good spirits. It even got a little bawdy…the topic of breast reconstruction set that off… where else do people have a good laugh about that stuff?

    Laughter gets me through… Thanks Avis and Company, thanks Terry (my impov teacher) who said, “It’s so hard when your body feels so bad, but your heart is so wide open!” So true, and she knows. She went through it four years ago. I feel this opening getting wider every day,opening into full flower like the intoxicating roses in my garden.  Thanks Steve, for making me laugh this morning, and putting the picture on my website. Thanks Cindy, for the yummy lentil soup I’ll be noshing on while I’m hunkered down these next few days. And thanks Terry, for the Trader Joe’s run today for the stuff I forgot!

    So now I settle in and take care of myself. My only job at this moment is to rest, heal, get well…thank you all for your prayers and good wishes. I truly could not do it without you!

    Love,

    Elizabeth

    Current time postscript:  neulasta was the stuff that you get to instruct your bones to make more white blood cells, so your counts don’t get low.  It made my bones hurt, a lot. I used guided imagery to tell my bones to produce white blood cells, so I ended up getting half the neulasta.  That fourth infusion was much easier.

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    As always, I have had a most enjoyable hour with the 2nd and 3rd graders at College Park Elementary School today.  On Mondays, Tuesdays, Thursdays and Fridays, I spend 40 minutes or so with a bunch of kids who want to engage in theater during their lunch break.  The first half of the week is big kids (4th and 5th graders) and the second half of the week is little kids. I have two people teaching with me, Jeremy on Tuesdays and Thursdays, Kari on Mondays and Fridays.  They are both about half my age and I adore them.

    Today we played a new game with the little kids.  It’s called “what are you doing?” and it’s an improvisation game.  I noticed a couple of kids that were afraid to get up in front of their classmates and do it.  No doubt they were afraid of appearing foolish, besides being just plain shy.  Some of the kids got up there and froze.  This is a think fast game.  I could see the little wheels and cogs in their heads evaluating possible ideas, afraid to toss out the wrong one, or just drawing a blank.

    I recognize this problem very well!  I spent the last few minutes of class talking about the inner critic, which Kari and I renamed The Goof Up Goblin.  The Goof Up Goblin really messes with our ability to have fun, and he slows down the game!  The Goof Up Goblin can be male, female, big, little, green, freckly, have wild hair, whatever way the Goblin shows up.  We chatted about the kind of stuff the Goblin  likes to natter in our ears.  I introduced a little box where they can keep the Goblin out of trouble when they’re coming to drama class to have fun. It’s right by the door, and they can just put the Goblin in there.  She’s fine in the box, and doesn’t make it into our classroom.  I would love to just make the Goblin go away completely, but that is not in my power.  I don’t know what other people or situations are feeding those goblins.  I just know that no goblins are allowed in My Classroom!

    The Goof Up Goblin can really mess with you if you are being treated, or are surviving cancer.  What I tell the kids is that they really can’t mess up, because there is no correct way.  The rules are there to help you be creative, but within those rules anything goes!  Today we shopped for smelly cheese, sucked on giant gumballs, flew airplanes, salsa danced, walked through peanut butter, went to the moon, chased bugs, and more other wacky things than I can remember.

    When you’re taking care of yourself, there is no right way, just the right way for you.  Maybe you want to be social, maybe you want to cocoon.  Maybe you blog, or maybe you hate the computer and would rather read a book.  Your approach may be to seek laughter and take comfort in your friends, or maybe you need to get really mad!  I’ll never forget a woman I met on a couple of occasions, once at California Cancer Care and once at Mills Hospital.  She swore like a trucker.  This is just SO —-ed! This just SUCKS! She was mad!  I asked her what she did, and she’s an architect.  Rock on lady!  I saw her later as she recovered, and she was doing great.

    What I need to feel good and what you need to feel good is probably very different.  There really is no right way to do it.  When well meaning people tell you what you should be doing, take it with a grain of salt, appreciate that they care, and do whatever the hell gets you through it.  I did Guided Imagery, massage, acupuncture, healing touch, therapy, comedy improv, shamanic journeys, art therapy, and who knows what else.  I have been a professional massage therapist for over twenty years, and it felt right to choose these things.  I even got on stage with a major part and performed a grueling schedule while I was going through radiation, and it fed my soul so delightfully that the exhaustion that came after was worth it.

    Another friend I know took good advantage of Ativan (affectionately known as Attagirl) and someone else worked at her job all the way through, which I did not.  Everyone of us is different, and the right way to cope is the right way for us.

    The people who love you will of course share their opinions.  It’s one of the things they can do, and they have to do something.  That’s a beautiful thing.  And, the last word on what’s right for you comes from you!  It might take a little practice to hear that voice, but take heart! The more you listen to that wise, amazing voice the louder it gets and the more wonderful it sounds.

    Today I am 49 years old, and I wouldn’t go back to being 45 for anything.  The Goof Up Goblin was still strong then.  He still exists, but he’s tucked away in a corner of my mind, and he has become very shy. I have compassion for him and I know where he came from, but I don’t have to listen to him.

    The best birthday present for me is the sun, my children, my husband, the little kids and the big kids, that I get to blog, that I get to touch people, that I’m still here.

    Wishing you every treasure your heart can reveal to you.

     

    Pink Link is a comprehensive online resource for people who have faced or are facing breast cancer.  You can find the link on the right of the page.  I highly recommend this site!

    This month there is a contest to win a book about humor, “Laughter is the Breast Medicine”.  Of course I just had to get into that act!  Laughing got me through, no doubt about it. To have a chance to win the free book, I had to answer the question, how has humor helped me heal?  Just thinking about that made me laugh all over again.  So I sent my entry, which you can read here!
    Here is my answer to the question,  “How has laughter helped you heal?”

    I was diagnosed with Stage IIIC Inflammatory Breast Cancer in February of 2007.  At the time, I was taking a comedy improvisation class on Tuesday evenings with my significant other. It all happened very quickly.  From needle biopsy to chemotherapy was ten days.  When I set my chemotherapy schedule, I kept my class schedule in mind.  I had chemo every other Wednesday (dose-dense chemotherapy) so that by Tuesday evening I would feel well enough to go to class.  I didn’t miss a single one! The week after my mastectomy, I still showed up and watched. I howled with laughter every week, all the way through chemo, surgery, and most of my radiation treatments.  I finally quit when I found my way to the stage and worked out my cancer angst as the White Witch of Narnia.

    Sometimes Steve would get protective of me when the physical comedy got wild, but the benefits of laughing far outweighed the risks of being spun around on the floor or pretending I was a wild animal.  We even got mileage out my baldheadedness.  Steve was bald too.  During a show we did in the community, we staged an argument in which we both pulled off each other’s wigs! After that one, Steve and our fellow improviser Mark went off on “making the chemo girl laugh” and it just got more and more outrageous.  I couldn’t breathe I was laughing so hard!  Tears were rolling down my face and they asked, “are you all right?”  Oh yes, yes, yes!  and on they went.  As I recall I felt pretty great the day after that one.

    Humor during cancer treatment wasn’t all about just laughing a lot.  It helped me so much to see the absurdity in the whole situation.  People around me were sometimes baffled by what I found funny.  How many tweens do you know who call their mom “Baldy” when they’re mad?

    What’s a bad hair day on chemo?  When you can’t get your eyebrows to match!

    Steve used to call me every afternoon during his commute and make me laugh.  It always made me feel better.

    Steve and I did not continue our relationship, but I bravely ventured out into the dating world again.  Tom and I are a success story.  If a woman with one boob, two kids and no money can find love, anybody can!  I knew he was the one when I knocked on the bathroom door one morning and asked him if my prosthesis was in there.  Now there’s a dilemma.  Can’t go out without it!  His response was to hand it to me and ask me blandly,

    “Honey, will you please keep track of your boob?”

    I could go on, but that probably is a long enough answer to your question!  My plan is to read and review this book, and post the review on my blog.  I will do that whether I win this freebie or not, because laughter is just SO good for you.

    I would know!

     

    That is the question…

    Is it more important to stay on the straight and narrow with diet, exercise, good health habits etc. or do you get to goof off because that is good for your soul?

    I think that a balance between the two is essential.  All work and no play makes Elizabeth a dull girl.  When the three tween girls who have been negotiating their spoil bring me some, I am delighted.  Reese’s peanut butter cups, yum!

    Sometimes people ask me, “did your cancer diagnosis make you change your diet?”  Of course the implication was that it was probably rotten before.  Actually, it wasn’t.  One of the toughest parts of living another woman’s nightmare is that she wants to make sure it will not happen to her, so she has to figure out what I did wrong so she can reassure herself that she is safe. That’s a whole different topic for another day!

    Back to straight and narrow…

    How is it that some folks do everything right, eat very well, exercise, practice yoga, meditate, don’t eat red meat, drink moderately if at all and still get cancer?  Others do all the wrong things and live to be 90.  Go figure!

    Yesterday I saw a video of the oldest concentration camp survivor, named Alice.  She’s a pianist.  She is 107 years old.  She survived because she was a famous concert pianist, and the prisoners who could make music had something to offer their captors.  What struck me most about her was that she is happy.  She plays the piano every day, still.

    How much health value does happiness provide?  How do you break down food made with love into bad  or good?

    Obviously I don’t go crazy on red meat or skimp on vegetables.  I walk most days.  I tend to my health.  The most important thing about that is the message I send to my soul. I strengthen the connection between body, mind and spirit by being committed to caring for me.  This is self care from love, not fear.

    If I am terrified of an occasional hamburger, or if I am awake nights because I ate a peanut butter cup, then my self care is motivated by fear.  Fear is hard on the body and weakens it.  Love strengthens it.

    When I was very sick, one of the nurses I worked with organized a food delivery sign-up so that I would not have to prepare food for my family.  I never worried about whether that food was vegetarian, how much fat was in it, or anything else.  I was so grateful to other people for showing they cared in this way.  We ate it all, with gratitude.  Gratitude is the best nutrition there is.

    This Halloween eve, as I sat in the kitchen drinking tea with my friend, I got such a kick out of those girls negotiating for their favorite candy.  When all three of them came and plopped a bunch of peanut butter cups in front of me I was delighted, not so much about the candy, but by the spirit in which it was given.

    So, I continue to be committed to my health, my happiness, my art, my dear husband and children, and to bold, outrageous naughtiness whenever I get those special opportunities.

    Here’s to your naughtiness this Halloween!

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