A week ago I noticed that I had pain under my arm near my breast. That was on Tuesday the 28th of September. I also felt a small lump, but didn't know if it was a lymph node or a cyst or something else. The oncologists PA gave me a physical breast examination and said that it was probably a cyst and we scheduled a mammogram. On Wednesday October 3rd I woke up with what appeared to be bruising on my breast. I hadn't remembered anything I had done to bruise it. I went in for the mammogram, which was a diagntostic (ouch), and they did an extensive ultrasound afterwords. The breast radiologist came in and said that he would just watch it, he didn't see anything unusual. A bit of thickening where the bruise was, but he said that could be from the bruise. He said if the lump was still there in 2-3 months, we would biopsy it.
I was relieved for about 30 minutes. After that I read stories of woman after woman who had advanced Inflammatory Breast Cancer because of delayed treatment. (By this time, this is where my mind was going.) So yesterday I phoned a gynecologist, and made an appointment, because at this point, no one has actually looked at the bruise mark on my breast (which is still there). I see her on Monday at 3:50 pm.
Right now I am feeling like CLL is a cake walk. AMAZINGLY, I just want to go back to having plain old CLL.
In boring ol' CLL news, my numbers at the oncologists office last week were...the same! In fact there was a slight downward trend. Nothing major, but hey! I'll take it!
Friday, October 5, 2012
Tuesday, June 26, 2012
Decisions Decisions.
Today, I am deciding if I should cancel my oncology appointment for Friday (3 days away). I am leaving for San Diego on the 15th of July, and am thinking that any possible bad news at the oncologists office could make my trip not so fun. We are most likely moving to the San Diego area in the next year and I need to look around and see what is what before making the decision. On my last visit, the oncologist told me I was good for 4 months. That would be the end of July. Only...their books only went out to the end of June, so I took that one. I really just want to cancel until the end of July.
However, in the past two weeks, I have developed a pretty severe case of what seems to be TMD. My jaw hurts. But...its sort of a mysterious hurt that moves around the right side of my face. Its focal at my jaw joint, but hurts up above my eye, in my cheek, even inside my right nostril. The dentist said that there wasn't anything wrong with my teeth, so I made an appointment with an Ear Nose and Throat doctor. That appointment is on Saturday. The pain has been here about 3 weeks now, but the first 10 days were the worst. It has gotten much better and is only a mild annoyance now. The strange thing is, it hurts when I take a deep breath... who knows. That is why you go to physicians I guess. So they can give you a good going over and then tell you that they don't know either....thank you so much that will be a thousand dollars.
Speaking of dollars. I owe my oncologist 550 of them. They said I need to pay up before July 1st. Gah. I am tired of this. Only I can't be. Because what is the other option?
Here is my concern: If the pain in my face is not TMD, but is actually something to do with CLL (for instance, hidden lymph nodes in my face or neck causing the pain), then that could mean a change in disease status and my oncologist should know about it.
I really just get so exhausted at the thought of going in to the oncologist. Its like a test. Did I pass? Did I fail? Have I eaten enough of the right things? Have I taken all my supplements? Have I exercised enough? Did my diet changes work? Will I get another 3 month reprieve ...or will I be looking at treatment.
It's all real and scary. I would like very much not to go through the "test" every three months.
For now, I am going to take a nap. My cat woke me up at 5 am because he was afraid of the thunder. He is a huge, 12 year old cat. At the first sound of thunder, he runs crying down the hallway and begs at my bedroom door to come in. I felt awful, because I told him to go back to bed. He cried for about 3-5 minutes then gave up. (I knew if I let him in this once, he would beg every night to come in and sleep on my bed). I never did fall completely back asleep, the thunder and lightning and hail were impressive. When I got up this morning at 7 am, he was hiding behind the couch. Poor puddy tat. I guess we all have fears.
However, in the past two weeks, I have developed a pretty severe case of what seems to be TMD. My jaw hurts. But...its sort of a mysterious hurt that moves around the right side of my face. Its focal at my jaw joint, but hurts up above my eye, in my cheek, even inside my right nostril. The dentist said that there wasn't anything wrong with my teeth, so I made an appointment with an Ear Nose and Throat doctor. That appointment is on Saturday. The pain has been here about 3 weeks now, but the first 10 days were the worst. It has gotten much better and is only a mild annoyance now. The strange thing is, it hurts when I take a deep breath... who knows. That is why you go to physicians I guess. So they can give you a good going over and then tell you that they don't know either....thank you so much that will be a thousand dollars.
Speaking of dollars. I owe my oncologist 550 of them. They said I need to pay up before July 1st. Gah. I am tired of this. Only I can't be. Because what is the other option?
Here is my concern: If the pain in my face is not TMD, but is actually something to do with CLL (for instance, hidden lymph nodes in my face or neck causing the pain), then that could mean a change in disease status and my oncologist should know about it.
I really just get so exhausted at the thought of going in to the oncologist. Its like a test. Did I pass? Did I fail? Have I eaten enough of the right things? Have I taken all my supplements? Have I exercised enough? Did my diet changes work? Will I get another 3 month reprieve ...or will I be looking at treatment.
It's all real and scary. I would like very much not to go through the "test" every three months.
For now, I am going to take a nap. My cat woke me up at 5 am because he was afraid of the thunder. He is a huge, 12 year old cat. At the first sound of thunder, he runs crying down the hallway and begs at my bedroom door to come in. I felt awful, because I told him to go back to bed. He cried for about 3-5 minutes then gave up. (I knew if I let him in this once, he would beg every night to come in and sleep on my bed). I never did fall completely back asleep, the thunder and lightning and hail were impressive. When I got up this morning at 7 am, he was hiding behind the couch. Poor puddy tat. I guess we all have fears.
Saturday, June 2, 2012
I. Have. Cancer.
I am unsure if I can put into words how freaked out I was (am?).Does freaked out even work in this instance?
Mike is in Arizona trying to get work. In the past, he has been there (here) for everything. We have spent only one night apart in 26 years. As it stands we have now been apart for 6 weeks and 2 days. He leaves Friday morning for home, thank you God.
The ER was slow, and chaotic. I was afraid. I was cold. I was tired. And then. And then the ER physician told me they thought I had either Chronic Lymphocytic Leukemia or Low-Grade Lymphoma....well. Well...I wanted to say. Are you sure? Because there is a whole lot of people in here you know. Are you sure your talking about me? I am only 44. I have never smoked. I have never drank. I eat healthy. I am in nursing school. I have no cancer in my family. Surely now, you must be mistaken... you better check your records.
Lets just say I actually suffered some pretty severe stress induced sleepless nights while my brain tried to wrap its squishy self around that bit of news.
They sent my blood to some impressive sounding lab in San Diego and we are still waiting the results which they said can take anywhere for a week to ten days. Its been one week.
For the first couple of days, my emotions were unstoppable due to lack of sleep and exhaustion. My daughter, bless her, was trying to cheer me up. She said" Mom, just imagine it is not 4pm and dark and cold and winter outside. It is actually 10:30pm and the sun has finally set on a long summers day. The pavement is still warm when we go outside and walk on the sidewalk in our bare feet and the air is that perfect temperature that makes your skin happy." She didn't quite get it all out before i was wracked with sobs. Not because of anything more than absolutely loving the memory of summer, longing for it, and the worry that I might not see it again.
I wonder if those who are told they probably have cancer have similar reactions. Everything was the exact same as the day before, except everything was so completely and horribly different. I felt, and still feel at times that I am looking out of someone else's eyes. The world is colored entirely in different hues. I feel detached from myself and at the same time, never more aware of me and of life and of breathing in and out and how perfectly beautiful and wonderful that is.
Last Friday I went to my pastor's office for prayer. I blubbered words and tears and used way too many tissues. He listened, and prayed with me, and over me. He anointed my forehead with sweet smelling oil. He told me then of how his father had died when he was very small, and his mom .... who had to go through the days afterward and still be a mom, later told him what she had used to get through the days of unbelief. She continued to say to herself.."Just do the next thing." Even as I write this, it brings tears to my eyes. What beautiful words. Just do the next thing. Because sometimes it feels that the future is so full of so many things to do, full of so many frightening places, crammed with tangled diagnoses, pain and uncertainty. But for now, I can just do the next thing and keep going.
I remember when my daughter died, how hard it was to leave the hospital. In the months leading up to her death I had worried about that moment over and over and over. How would I leave? I decided, that when the time came. I would put one foot in front of the other. Over. and over. until I was in the car. And that is exactly what I did. I carefully placed one foot in front of the other, and soon I was walking away.
It's sort of the same now.
For me, the footsteps in the sand poem, has been changed to footsteps in the snow. Thank you my God, for holding me when I cannot walk on my own.
Crazy Sexy New me
The beach, the cottage, the tranquil water, the warm sand, the palm trees, the sun...it is what I feel I need at this moment. In about 2.5 hours I will be sitting in the oncologists office listening to him tell me how good...or bad...the canser (spelled this way thanks to Kris Carr of Crazy Sexy Cancer, "just to let some oxygen back into the room" she says) that I currently have in my immune system is.
Immune system. Interesting little part of the body that keeps us alive. As important it turns out as our heart, our brain, our lungs. My immune system has always been peculiar. I have been diagnosed with Chronic Fatigue Syndrome, Post Viral Syndrome, Fibromyalgia, Undifferentiated Connective Tissue Disease...all little labels and other ways to say "WAKE UP! YOUR IMMUNE SYSTEM IS SICK!"
Oh that had I known waaaay back then, what I know now. It is possible to help your ailing failing immune system! How? Whole foods. No crap. No diet soda. No white anything. No dairy. Greens. Beautiful, vibrant, life giving greens. Tomatoes, garlic, onions, lemons, whole grains like quinoa, sprouted beans and seeds, forbidden rice, brown rice, oranges, apples, pears....juice. Juice! Oh how I wish I had taken care of me then. Because I would not be in freak out mop up the mess mode now.
My education begins now. Strangely though, I had already known a lot of it. And I even thought I was eating my greens. Ha! I was flirting with the idea of eating greens, I was not filling my plate with chlorophyll. I was adding a small salad, maybe some wilted spinach in my quesadilla's. I was too busy. Too busy to eat right. Too busy to knock out the coffee. Too busy to cook. Too busy to juice. Too busy to move my body. Too busy to pray. Well guess what? I am not too busy now.
I am fighting depression. I have canser. Of course I am fighting depression. But the sky is not working with me here! In Montana right now, the sky is gray. The trees are bare. The dull lifeless colors of the outside world curl me into a ball. But into a ball I will not stay. I am going to do what I can to fill my world with color. I am going to beg borrow and plead for a way to get to the sun for a few days, a month, a year :D. I am going to look at the pictures of the beach and the sky and I am going to meditate on the exquisite wonderfulness of them.
An excellent book, whether you have cancer or not is Crazy Sexy Diet.
Watch and Wait Girl: I guess that is me.
Anyone who knows me knows I am not a watch and wait type of girl.
So like I mentioned before. I am juicing, reading, moving my body, meditating, praying, taking yoga. I am going to be in control of as much as I can...cause thats the way I roll.
Even before this diagnosis, I have been asking God a lot of questions. I have tried again and again to wrap my mind around a loving God who could allow someone to be tormented forever in hell. Nope. Can't. If God is love, and God is surely love, then hell is not hell. I know, I know. A hundred different theologians will tell me different. They will talk to me about free-will. But...no. Listen. I am imperfect right? I am a messed up human being. There is not one soul. Not one person. Not even Hitler, or Stalin ...or George Bush :0, that I would ever, ever, ever want to suffer for eternity.
Because this is the thing. We are all broken. We are all trying to pick up pieces and live this life and do the best that we can. We are Christian, Muslim, Hindu, Atheist. We are people. And we are trying.
I think that people become comfy in their little paradigms, because....because its a scary place out there. And 4 firm walls of belief that you are right, can take the edge off.
All I know is this. Every time I question, every time I ask, every time I look, every time I seek, every time that I connect with my heart to God, he lets me out of the box I am currently in. I peak my head out at first, I look around all amazed and terrified, and then I climb out and I stand in the bright illumination of what is in front of me. A whole new way of thinking that I never realized existed before. And I start to get comfortable there. I start hanging my paintings and rearranging the furniture. And just as I am about to settle down, I realize that the thing I just hung the painting on is a wall...which means there is something on the other side. So I peak my head above the side again to find I am in another BOX! And I climb out, all freaked and amazed like before. One of these times I am going to realize that the boxes do not end. Its a journey. An endless amazing, beautiful, scary, messy progression. I think I am getting that now.
For the moment. I am much more solid than before the oncologists appointment. My feet are firmly planted on the earth that I love so very much, and my mind is exploring the depths of what it means to be human. What an amazing life this is.
Being Green
Today's post is all about the green. Green has always been one of my favorite colors. But now. Now when it matters, green has become my refuge.
Where would we be without green? Its power is unmistakable. Green = life.
Green is verdant. It is alive, lush, wet, and pure. When I think of green, my breath comes easier and my mind is imbued with the strength of a thousand peaceful forests. When I meditate upon the color green, I can imagine my entire being filled to overflowing with vibrant green light. Every cell inside of me, full and radiating green light. Even in winter, when all things seem lost, there are the evergreens. They stand tall and sure and hold before us the promise that spring will indeed come again.
When it comes to tea, green is best. Do you know why you should drink it? Not just because it is the color of clear emeralds, although if color has energy (which I believe it does) the energy of green tea is vibrant. Green tea:
- Eliminates free radicals (slows aging!)
- Lowers bad cholesterol
- normalizes blood pressure
- helps fight bacteria and viruses, cancer
- increases good flora in your digestive tract
- stabalizes diabetes
- assists in weight loss
- fights cancer (even leukemia cells!)
"People with strong green energy stand tall and radiate openness. Those with weak green energy appear tight in the upper body, they are slouching - their shoulders are drawn forward, protecting the heart center, and their head and neck are brought forward as well."
Hmmm, my passion for green may be trying to tell me something. My posture has always been not so great in the shoulders and upper body. Today... I will try and stand tall and open up my heart.
They also say that green is the energy of love and transformation. And that the green heart chakra is the place where you open up and connect to something more, something bigger, the spiritual, the divine.
"As you unfold the petals of your heart chakra, you find the seat of compassion, not only for others, but for yourself as well. You begin to radiate love. You begin to sense the interconnectedness of all of life."
Today, I am green. I am vibrant. I am filled with the energy of all living things. I will stand tall, and open my heart to compassion for others, and compassion for myself. I will walk through this day with vibrance, and feel the connection between myslef and every other form of life I see, and all those that I do not.
Have a blessed Tuesday!
Freaking Out and Being Calm
What I have learned about this so far, is that even if I am in the poor prognosis category, it doesn't set in stone how things will play out. There have been plenty of people with the bad markers that have gone years and years without needing treatment. There have been plenty of people with the "good" markers that needed treatment within the first year of diagnosis.
So I am praying. Praying of course that I have the good markers, because like a beautiful placebo, my mind can latch onto that. But I am also praying that I do not put much stock into the results no matter what they are.
I will also be getting checked for this persistent tickle in my throat, and a suspicious looking new mole. Something I have come to understand is that people with CLL are at a much higher risk for secondary cancers. Especially melanoma and lung cancers. I would say that I developed the mole and the cough just because I knew about the increased risk. I would love to say that. The truth is, I saw the mole the day I was diagnosed in the ER (no previous history of any knowledge of CLL), and the cough developed 3 days later, when I had not yet stumbled across the lovely information of the increased risk.
I am just breathing. I have made a deal with myself. No freaking on any of this until after my appointment. Every time I start to worry, I hold my hand up in my mind and say "bah bah bah...nope! Not till Monday afternoon." And my mind listens to me and remembers to smile and laugh and have fun.
Love and light and blessings and peace to all of you!
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