A continuation of my tweets telling the Legend of ChemoBabe…
The cancermonster bit her so ChemoBabe followed her brother’s ghost to the Phoenix nest. She needed a feather to burn the cancer & herself.
She crossed the desert. She climbed mountains. The journey was arduous and uncertain. Then she got to the Land of the Phoenix.
On the highest peak of the mountain stood a bilobab tree with 3 nests. She saw red, blue, and an orange birds, magnificent and otherworldly.
“Which is the true Phoenix?” she wondered. If she picked the wrong feather, she would burn and not regenerate. She looked at each closely
The wind carried her brother’s voice: “Look. You will know.” She saw glints of gold in the red bird and knew that it was the true Phoenix.
Atop the cold & desolate mountain, she climbed into the nest. She could see the world around her. Her arms & legs were cut by the branches.
Finally she got the red bird’s feather. When she climbed down, she cut herself open with it. Then she made a fire to set herself aflame.
Tags: attitude, chemo rollercoaster, courage, the legend
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I have been frequently asked about the origins of ChemoBabe. The best I can come up with is that the world of cancer is often emotionally uncharted territory for those who enter it. We are forced to improvise, to create strength and courage for ourselves in a place where we have no repertoire or history. Some do it through a strengthening in their faith. While I have a strong faith, I needed something more, so I invented this superhero to be more courageous and strong than I myself felt I could be.
Last night, after another unnerving doctor’s appointment, I started tweeting the legend of ChemoBabe, meaning each excerpt is 140 characters or less. More will follow…
Here is the legend of @chemo_babe… Chapter 1.
A mild-mannered professor and mother, she first encountered the cancermonster when it took her beloved brother at the young age of 36.
Grief-stricken, she reached out to others bitten by the cancermonster. She saw how brutal and cruel he was and worked to keep him at bay.
Then, with great stealth, the cancermonster bit her as she rested, unaware. Steadily, the cancermonster’s venom spread in her body.
When she felt it growing, she was angered. She cried to the heavens. Hearing her plea, her brother appeared to her in a vision.
“You, Sister, must defeat the cancermonster. The only way to is to let yourself burn down. The cancermonster cannot survive the fire.”
“In order to survive fire, you must open your vein with the feather of the Phoenix. This will allow you to regenerate.”
“But how can I light myself on fire? How can I burn?” she pleaded.
“Trust me,” he said. “You can do it. And you will triumph.”
Tags: attitude, chemo, chemo rollercoaster, courage, hope, the legend
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I had a fitful night’s sleep last night, with at least three dreams I that I partially remember. They all involved me being put in situations that required me to steal a vehicle and make a desperate getaway. In one, I was stranded and alone, needing to find my family. In another, my husband and I had been framed by a bad cop in an isolated place and needed to steal his car to get to safety. We were worried that when we turned the key in the ignition, the car might explode. (It didn’t.) In the last one, our three year old son was in the car with us and wanted to know what “haunted” meant. We needed to make a break for it again, but my husband wanted to slow the car at a creepy part of the road so he could explain the word to our son.
I once had a therapist who was convinced that car dreams reveal how you feel about your life. Since my husband and I met with the oncologist on Thursday, I have been saying that I dodged a big fat bullet. I had shared with the doctor my what-if anxiety, and she, having seen a lot of bad stuff happen to people over the years, reassured me that I did everything I could have and that there is no reason to believe that any change would have allowed my disease to have been found earlier. I had a very aggressive cancer and I am lucky I found it before it metastasized. That existential reality, combined with the seven year window that made the targeted therapy available where it previously had not been, makes me feel incredibly lucky.
Today is my birthday, and I think the onslaught of car dreams comes from a sense of my good fortune and the utter randomness of it. I am stealing time. I had to worry about setting off a deadly explosion in an situation where it was my only way out. I have had to make a detour and teach my children about the scary parts of life.
The trauma of this is real. I know how bad cancer can be, and all indications are looking like I am on the other side of this horrible disease. Using a metaphor from nature, I find reason for hope. Yesterday,we had a severe weather warning here. Sometimes, life doesn’t let you plan, but you make the best of what is coming. We remade our plans and snuggled down inside for an at home day, we read, ate yummy food, and hung out. The thunder and lightening came and we watched it pass. Today, the sky is a clear blue. The sun shines bright and birds are singing. The creek that runs along side our home is full and clear. And today is my birthday. The storm has passed. We are on the other side.
So we will enjoy this lovely day and rejoice in it.
Tags: changes, gratitude, grief
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For the most part, I’ve managed to keep the “what-if?” thoughts at bay. As a rule, I don’t like to expend mental energy on unanswerable questions, preferring to focus on more productive lines of thought. Since my surgery, it’s been hard to keep a hold on them, though. The double mastectomies were painful and emotionally challenging. They would be in any case. But the lymph node dissection, warranted by the four lymph nodes that lit up in the PET-scan during my diagnosis & shown positive for cancer by a biopsy, is going to hang over me for the rest of my life. There is a whole list of things that I can’t do anymore because 18 lymph nodes have been removed from my right armpit. I am now forbidden, for example, to garden barehanded, get blood pressure or blood drawn from that side, or move heavy furniture. I will have to take precautions that vary from annoying to uncomfortable. I have to be wary of sunburn or infection or cuts on that side and I will now always fly in airplanes with an elastic compression sleeve on my arm. All of these measures aim to ward off an episode of lymphedema, which, once triggered, can become a chronic and painful problem.
While we definitely celebrate the great pathology result I received after my surgery, it changes my prognosis but not my course of treatment. For some reason, a number of folks assume I must be finished with treatment now. They have said as much when they see me or email me. I think that misconception, combined with understandable compassion fatigue, explains why folks have all but stopped signing up to help us out on our help website.
It seems logical that I should be finished with treatment, but the course of treatment is determined by my original staging not my downstaging. If I had started as Stage 1, I would not have had the lymph node dissection and the long term side effects I outlined above. Even if I had been Stage 2, I would not be facing 6 1/2 weeks of daily radiation, to begin in the next couple of weeks. I would still have Herceptin infusions through November, because that has to do with the pathology of my disease, not the staging. But the next big thing, the radiation, is completely a result of the timing of my diagnosis.
Which is why I am what if-fing. I keep thinking about how I had scheduled my annual doctor check up in early May 2009. I always have an exam around my birthday so that I can remember to do it. My doctor’s office called a week before to say that my doctor had to reschedule because of an unforeseen conflict. My family was set to move at the end of June, and given her limited clinical hours and my jam-packed, get-outta-town schedule, there was literally no time available to see her before we left. I decided to just wait until we got settled in our new city with a new doctor. I felt fine and had no chronic health problems that needed monitoring. What difference would a few months make?
So that’s my obsession. Could I have found my cancer earlier and avoided some of this discomfort and misery? I did monthly self-exams and I didn’t feel anything until September 2009, so I don’t know that my doctor would have noticed a lump back in May. I had asked her the previous year if I should get a mammogram. She had told me about the new protocols that did not recommend them for women under 40, so there wouldn’t have been any imaging done. But I can’t help but wonder if another set of eyes and hands at that time might have felt something suspicious.
When I did feel my lump, my husband sprung into action, finding the name of a good primary care doctor from friends. His practice was full, but a doctor-friend recommended us as patients and he found a spot for us. My husband called to make us appointments, which were not going to be available for a month. When my husband explained that I had a concerning lump, the receptionist fit me in a week later instead.
I know we acted as quickly as we could have once the lump was found. I saw my new doctor, who felt the lump that I felt but assured me that he would “bet the house” it wasn’t cancer, given my overall health and young age. I explained that after my step-brother died of metastatic prostate cancer at 36, I no longer took comfort in low probabilities. He tried to get me in for a mammogram that day but I had to wait two days before they could fit me in. This was followed by several weeks of diagnostic tests and second-opinion seeking before I began treatment.
According to the oncologists, it takes 6 to 8 weeks to lose ground in staging for an aggressive disease like mine. So I did not lose ground during the diagnostic phase. But I had four months between my missed doctor’s appointment in our old town and the one I urgently scheduled in the new. What if she had found it? What if I had begun treatment earlier? I would have been spared much of the discomfort that I will now live with, the next phase of treatment I face.
I had been looking forward to not working much this summer, spending time reconnecting with my kids and building our connections in this new place we have moved to. I realize now that a good chunk of summer will be taken up with treatment. After completing two major phases of treatment, I finally learned that the being “finished” does not correspond with the doctors’ time messing with your body. Recovery takes a lot of effort and much more time than the treatment event itself. It takes 6 months to a year to recover from chemo. I am still menopausal from it. The surgical pain is ongoing. As a result of both treatments, I wake anywhere from 3-6 times a night from either nightsweats or pain. It will take 6 months to a year to recover from the radiation, which will bring me skin discomfort and fatigue. Reconstruction surgery cannot happen until a year after radiation is over, summer 2011. And reconstruction is not one surgery but three, so I will spend next summer in the OR and recovering from each of those operations.
I don’t blame my friends from feeling weary of all of this. I know I am. I hate this experience of new treatments bringing new kinds of physical discomfort. I hate the cumulative effects of it all. I hate how much I have to endure and keep on enduring. I hate knowing that, in the end, Me 2.0 is going to be a compromised version of Me 1.0.
Tags: changes, coping, diagnosis, identity loss, mental health
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Dear Blog Readers,
I do not like cancer. In fact, I HATE it. I hate cancer because it is all wrong! It is wrong because it hurt my mom, and KILLED my uncle! I is also wrong because it makes me do all sorts of things weird, like want to live somewhere else, away from cancer, for a WEEK!!
I would like to ask cancer why he does this. here is a letter to cancer from me, explaining why I hate him:
I HATE you. I will tell you why: You do AWFUL stuff. I mean AWFUL!
That is all I want to say.
Tags: daily life, parenting, what to say
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