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 [...]
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
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…
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.
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it. When I received my diagnosis, I called her up and told her “the [...]
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.
When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.
I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.
I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.
Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.
This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.
Sometimes emulating an ostrich is really not such a bad strategy!
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 [...]
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!
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.
One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us. If we believe that, we can un-create it, or so the wisdom goes. Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be [...]
One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us. If we believe that, we can un-create it, or so the wisdom goes.
Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be gentle on yourself.
I have always been health concious, although I have not always done what I know to be best for myself. I certainly pointed a finger at myself at first when I was diagnosed with Stage IIIC Inflammatory Breast Cancer. If only I had been more consistent with exercise. If only I had eaten more vegetables, if only I had left a stressful marriage years before, if only……
I got over that and got committed to surviving. I had some strong beliefs about what would work, and fortunately for me I survived. Did I survive because of the acupuncture, the massage, the therapy, the healing touch, my health shakes, my self inquiry? Or did I survive because Dr. Brown knew what sort of cell type I had and that she expected the cancer to respond to the big guns she fired at it? Was my fantastic response to chemotherapy a result of my holistic East/West approach, was it luck, or the wonderful, compassionate and thorough team of doctors who treated me? In any case I was blessed. If I had a setback whose fault would it be?
Nobody’s! I repeat, nobody’s.
I had a friend in my art and imagery support group who had faced an aggressive breast cancer. She believed strongly in the approach she had taken. When her cancer recurred, she was certain that she had failed. It was hard to watch her beat herself up about it, and I was certain that her self flaggelation was not helping her body to stay strong.
I believe very strongly that self love helps us to be strong. Love strengthens and heals. Whatever beast has intruded on your life, self blame will only give it power. Self blame is a useless, counterproductive activity. Now don’t blame yourself for indulging in self blame! Enough already if you are doing that!
Cancer happens. It sucks. Sometimes it happens again. Cancer happening again does not mean the end. I asked my oncologist what would happen if the cancer I beat once were to return. Her response was that we would beat it again. She’s a research specialist among other things, and in the cancer world new stuff is coming to light all the time. It is true that people still die of cancer. That does stink. However, it is also true that more people don’t die than do on the whole.
Setbacks can be anything. They can be chemo effects that don’t go away as fast as you want them to. A minor or major recurrence can be a setback. I viewed my lymphedema, which surfaced nearly two years out, as a setback. At first I was annoyed at myself for not being more careful. I got over that. It was just a setback, and now my lymphedema is very well controlled. Hey, I’m still here!
If you are reading this today, you are too, and that’s what matters.
I always look twice when I see a woman with very short hair. I wonder…. When I was wearing my bucket hat with the “cancer sucks” button on it, I was occasionally approached by survivors who wanted to encourage me. I appreciated that every time, especially the ones who had finished with treatments some time [...]
I always look twice when I see a woman with very short hair. I wonder….
When I was wearing my bucket hat with the “cancer sucks” button on it, I was occasionally approached by survivors who wanted to encourage me. I appreciated that every time, especially the ones who had finished with treatments some time before who looked healthy and well. When I’m in an environment where I know it’s ok, I do that as well and it is well received.
When it seems so but I’m not sure, I don’t ask but I want to. I want to know if she’s part of the been to planet cancer club. I’m not sure why I want to know but I do.
The cancer experience changed me irrevocably. I would not have chosen such a method to create such deep change, but my life is very different and much better. People sometimes ask me if I am glad it happened. If I had a guarantee that it wouldn’t bite me again, my answer would be an unequivocal yes, even though I am missing an appendage and wear a compression sleeve on my left arm.
It is so hard to explain how this is so to people who haven’t had to face it, and it’s an experience I wouldn’t wish on anybody.
That handsome woman there with the chic, outrageous short hair might just be another member of the club I never wanted to join, and she might not…
I guess I’ll never know.
Is it yours? Is it your family’s? Does it belong to your kids, your job, your partner, is it hostage to dreams you have tucked away for the future until you could ransom them? Do you value it? Why? When I was diagnosed with IBC in 2007, my life had become unbearably stressful. I was [...]
Is it yours? Is it your family’s? Does it belong to your kids, your job, your partner, is it hostage to dreams you have tucked away for the future until you could ransom them? Do you value it? Why?
When I was diagnosed with IBC in 2007, my life had become unbearably stressful. I was overwhelmed by the fallout of a horrible divorce, I was struggling to make ends meet, my children were hurting, and I came perilously close to losing my job which had been a labor of love for many years. When the doctor who did my ultrasound and biopsy told me “this is very possibly a cancer”, my first thought was
Oh no. My poor children. No. This can’t be happening.
I knew I had to survive for them. Then I realized I had to survive for me.
Four days later, I was at a restaurant waiting for my breakfast, passing time while my car was being serviced. I got the call from Dr. Borofsky. Yes, the mass in my breast and the lumps under my left arm were cancer. I was sitting next to a couple having breakfast, and I tried not to call attention to myself. After the call, my breakfast arrived. I tried to eat it, but it tasted like sawdust. As I was struggling with my breakfast, the couple got up to leave.
The woman approached me and said,
“Honey, you’re gonna be all right.” I was speechless. While I recovered, she continued. I remember her face ever so clearly. Big blue eyes boring into mine, red hair, her expression deadly earnest.
“Do you have children?” I nodded tearfully.
“Well, this is their time to learn that you come first. Nothing, and I mean nothing is more important than taking care of you right now. Do you understand?” by this time I was really crying. She went on, “and when you get scared, you just feel around in you left back pocket, and I’ll be there, praying for you.” I blubbered, “promise?” and she did. She meant it. To this day I don’t know that woman’s name. I never saw her again. I will always be grateful to her.
Later, my struggling seven year old daughter would tell me “ever since you got cancer, all you care about is yourself!” That was hard, but self care for me was not negotiable. If I gave my life away, how was I to love my life enough to tell my body to hold fast? Whose life was I fighting for, if not for mine?
It was tough at first. I had to learn to pay attention to subtle signals from my heart and spirit about what I wanted to experience, what I wanted to do with the windows of strength and focus that I had. Before my surgery, I painted my room purple so I would be enveloped in my favorite color while I recovered. I rediscovered painting after decades of not even picking up a brush. I made my Bay Area stage debut as the White Witch in “Narnia”. I blogged on Caringbridge. I accepted every offer of help I received, as a heart opening opportunity. I went to my comedy improv class every Tuesday and laughed like a lunatic. I made sure that even if I felt like crap, I saved some juice to sing my children their lullabies.
Happiness and satisfaction made my body hum. I chugged along through chemotherapy uneventfully without interruption, which was the goal. Creating a life that fed my soul kept me engaged in doing everything I needed to do to get well. Self care was not a task, it was love. It was love for myself, love for the people who cared about me, love for my children, love for this beautiful world which I am still blessed to inhabit.
Today my life looks very different. I had been a professional full time massage therapist and teacher for nearly twenty years, and now I had a moderately gimpy left arm and not so much stamina. So other things, things I loved, came to fill in the gap. I provide massage for very ill pediatric inpatients at a children’s hospital, and I teach theater arts to children in an elementary school. The art that began to emerge after my year of treatments was shown locally, and people actually bought prints! I discovered through Caringbridge (which I highly recommend) that I loved blogging, so here I am blogging again!
Having discovered who I’ve been hiding all these years, I brought her to light and my husband of just over a year found me.
So, with all this ”me” focus, what happens to my kids?
I laugh with them. I nurture their dreams, and they get to see that I am nurturing mine. I spend more time with them. I do shows with my daughter. My son just popped his head into my room and said something ridiculous, cracked me up, then left without a word. I take them and their horde of friends to the beach. When I have been taking care of myself, I have the patience of Job, which is quite an asset with a tween girl and a teenage boy. Most of all I am still here, with them.
That red headed woman was an angel.
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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