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    Okay, so you’re starting chemo. It was more than five years ago for me, but I still remember. Here’s what I wish someone had told me:

    This one is the hardest, because it’s unknown. Once this one is over, you will feel so much better, because you will know what to expect for the next ones. Each one will be a little harder than the last, because the effects are cumulative. The good news is that typically they don’t change. You’ll get a sense of how it goes after this one. I was vastly relieved that I didn’t turn green or blow up. That’s the irrational fear, isn’t it? The good news is that these folks really know what they’re doing. They’ve been doing it for a long time and they have it down to a science. You are in very good hands.

    It’s great to have a buddy who’s been there. It’s not really helpful to know all the side effects that could happen, because many of them wont, or they wont be severe, or they will and you’ll deal with it then. If you have a buddy who’s been there, you can call her up and say “I feel like …..is that normal?” and get some reassurance. You probably at some point may need to whine a little. That’s totally ok. After a couple of days, it starts to lift, and you get to feel normal until the next one. My buddy told me that a Coca-cola would help me with nausea, and it did. Unfortunately I still associate Coke with comfort, alas!

    Your body may feel strange to you. That’s normal. This is something new. Chemotherapy cured me of my panic attacks. I was experiencing a racy feeling that I knew were the steroids. I knew it was chemically induced, so I didn’t panic. No panic attacks since!

    Please, take all the medications they give you to keep you comfortable. A stressed body does not have the resilience to cope as well as a comfortable, rested body. Stay comfortable!

    Do you have people to take care of you? Do you have help? Do you have plenty of comfort items available to ride out those possibly uncomfortable few days? Show yourself how much you love you, by tending to your needs the way you would your dearest friend or your child.

    Here are my notes on side effects, for my friend on TAC:

    Either the Adriamycin or the Cytoxan is a bladder irritant. Cranberry juice really helps. Have some around!

    I was terrified of the neuropathy that happens with Taxol. I’m a massage therapist and neuropathy was just too horrible to contemplate. I asked my oncologist’s assistance in desperation if there was any way to avoid it, and she told me that L-glutamine in mega-doses was helpful for some people. I found some powder that provided a gram per spoonful, and chugged it in water for 10 grams a day. My neuropathy was minimal, and not lasting. Talk to your doctor about this. I took 10 grams of L-glutamine for the five days around my infusion, and two grams a day for the rest of the time I was on Taxol.

    Get some funny movies, and keep your sense of humor! Laughing is good for you white blood cells. You may even get to cut back on the neulasta shots, as I did.

    Oh yes, don’t forget the Biotene! Magic mouthwash for sensitive mouths, keeps mouth sores at bay. Use liberally.
    Be proactive. At the first sign of any form of discomfort, head it off by taking amazing care of yourself!

    You can ride this wave, sister. Let nothing be more important than your self care, nothing. Side effects are worse with stress. Be good to you and know that you are on my heart. Sending you love this Wednesday.

    Elizabeth

    I remember those days.

    One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick of it!

    He patiently listened while I told him what was bothering me. He didn’t try to fix it, he didn’t try to make it go away or tell me everything was going to be ok. He just listened. After that, I felt better.

    There were other times as well, many of them. I learned to keep a few tricks up my sleeve for those days. These are the things that kept me going, one weary step after another to the finish line.

    1. Distraction. I had several really good reads stashed. When I was on Taxol, my eyes would be really bad for a few days, and I remember affectionately being out with my dear friend Christy and buying another pair of readers to put on top of my regular specs. It worked! I looked funny, but I could read. Good movies are another welcome distraction. Funny ones are especially good, but whatever I could get lost in was great.

    2. Get support. Good ol’ Flo, my buddy, would get my tearful calls. She would commiserate (been there, had that stuff, yup, it does feel like Drano in your veins, it’ll ease off soon) and her husband Don would call out in the background, “This is TEMPORARY!” My mom was good for that too, although it was hard for her. Some folks weren’t. My significant other at the time would get frustrated that he couldn’t do anything about it. I didn’t call him. I let him do other stuff for me (like make me laugh) but not usually the “I’m so miserable” call.

    3. Nurture your soul. Whatever feeds your heart, deep down, will surprise you with the energy you have for it! I got out my paint brushes for the first time in 20 years. It was wonderful!

    4. Give yourself a pep talk, and let others give you one too. Remind yourself of how far you’ve come. Even if you’ve only done one infusion out of eight, that’s one down and one less to go. Make little black boxes and check them off if it helps. Whatever it takes so you can see progress will keep you motivated.

    5. Read, listen to or watch something really inspiring. I used to keep a copy of “Remarkable Recovery” under my bed, in easy reach. It was full of stories of people who had recovered beyond expectations, in a number of ways from a number of illnesses, including rare and aggressive cancers.

    6. Be taken care of like you would care for your beloved child. Cozy blankets, hot chocolate in bed, whatever makes you feel nurtured, body and mind. Get a gentle massage from someone who is skilled and careful. Have someone who is caring for you make you something delicious.

    7. Make plans for all the great stuff you’re going to do when you finish treatment! Daydream, make lists, whatever puts the future without feeling rotten within reach.

    8. Have someone take you to a beautiful place that restores you, like the beach or a beautiful garden. Or, if you’re well enough, pack a picnic and take yourself!

    9. Give yourself small rewards. I used to go get a Jamba juice after every infusion, if Flo hadn’t already brought me one!

    10. Read all the loving messages you’ve received on cards, on the internet, and anywhere else. Let them remind you how supported you are.

    11. Make your own list, and make it full of choices. Do it while you’re not feeling like you just can’t take it anymore! Include very easy things so there is always something to do that could make it easier to move one more step forward.

    12. Pat yourself on the back often! This journey is not for the faint of heart! You didn’t choose to be on it, but you’re a trooper for staying the course.

    Any more ideas? Send them on!

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    Chemotherapy is a task that can’t be done alone.

    It takes a lot of people, doing a lot of things, to help a loved one cope with cancer treatment and allow her or his body to cope with the treatments and heal. Community is essential.

    I became familiar with Lotsa Helping Hands when a friend of a friend was diagnosed. I did not live very near to her, but I could be in communication, and everyone who was able to help her with all the gazillion things that needed doing had a way to keep it organized.

    If you’re facing cancer treatments and are willing to say “yes” to all the help that people want to give, you might benefit greatly by forming an online community. You don’t even need to be computer savvy. Just the person you put in charge, and I highly recommend that it not be you!

    If you are someone who wants to support a loved one and don’t know how to go about it, once again an online community can be a huge help. The patient lets everyone know what is needed, and the community fills the gaps.

    The benefit of this is not simply logistics. It is also support. My Caringbridge journal provided me with this, and I had Susan Moore Rodgiguez (5th floor charge nurse and resident angel) organizing food delivery, and I was able to organize child taxiing and care.

    It is deeply healing just to see how many people are willing to jump in and help! You wont know unless you ask. If people are given a way to find their helping niche to show their love and care, they are happy to do it.

    Lotsa Helping Hands is a great resource. I’ve included the link here. You can also simply set up a mail list (someone other than the patient in charge!) or, I’ve seen Caringbridge sites used in this way as well.

    Most of all, don’t be afraid to ask for, and receive, all the help that people want to give. It’s good for them, and will make all the difference for you!

    http://www.lotsahelpinghands.com/

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    My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.

    Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,

    “Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.

    Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.

    So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?

    I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.

    A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.

    What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
    During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.

    Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)

    I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.

    The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.

    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!

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