Retreating from the World

I crave solitude. It is only in the silence and aloneness that I can hear the things that my heart is trying to tell me. I often hear folks mention that they keep the t.v. on at home for “company”. I think that many times we are afraid be alone with ourselves, to sit in silence and allow the truth to reveal itself. So many decisions need to be made regarding my health. I hear what the doctors tell me and I read the literature, but what I most need is to be able to listen to my own inner voice. I need to give myself permission to make my own choices about treatment, to tune out the others and tune into myself.

I have taken myself on a retreat, to a little cottage in the woods. It is silent here, no television, no dogs barking or children screaming. I sit and watch the birds at the feeder, deer marching silently through the forest, squirrels scurrying about. The tree tops do a choreographed dance in the wind, like metronomes set at the most somber tempo. I fix simple meals for myself and slowly eat while listening for the still small voice that I know is my higher power speaking to me.

My surgeon's nurse called me earlier this week with the results of the MRI. It showed nothing significant, so the doctor wants to take one more swipe at getting clean margins. She scheduled surgery for March 6^th.  I really almost wish that she had seen something, making a mastectomy necessary. The reality is that she may still not get clean margins and have to do more surgery.  She talks about being motivated to save my breasts. I really do not give a damn. These girls have done their duty. They attracted several men, some I could have done without. They nourished and comforted my four babies. I am willing to let them go if need be. I think she is more motivated to save them than I am.

I got a call this morning. My daughter is in the emergency room. She began coughing up blood last night. They think that the tumor has grown into her airway. My immediate thought was that I need to leave here and go to the hospital.  I spoke with my daughter who convinced me that there is nothing I can do there. Her sister is with her and they will keep me informed.

I have gotten one bit of clarity in the silence here. I am not afraid of dying, we are all going to die sooner or later. What I am afraid of is not being fully present for myself and my family. I am afraid of not feeling every single thing, of trying to avoid the pain and in doing so robbing myself of the painful joys to be found in the sadness.

Miracles

When my daughter was first diagnosed with cancer I was consumed with fear. The statistics for long term survival were grim, and I could not fathom losing my child. After the first few days and weeks of shock, anger and denial I began to wake up each morning and consciously think "I expect a miracle." I knew we needed a miracle for her to stay with us. After a while I thought maybe I should be more specific. I mean really, we did not need a virgin birth or to feed a multitude with five loaves and two fish, or even a barrel of water miraculously turned to wine. But I just kept expecting a miracle, leaving the details to the universe.

As I have said before, I do not consider myself to be a Christian, and I always say that I am not religious, but that's not entirely true. I religiously attend a program of recovery and practice the tools of that program to the best of my ability. I do believe in miracles because I have witnessed them. They are not the big Walk on Water kind that you read about in the bible. They are the quiet miracles that happen every day if we are just able to recognize them, like witnessing the birth of a new baby, or seeing the seeds planted weeks ago sprout up through the soil, or watching someone who seemed beyond hope turn their life around.

In spite of the horror of cancer I have in fact seen many miracles. The fact that my daughter is still here today is the biggest miracle in my eyes. After that come the many ways that we have been shown how much goodness there is in the world. Friends, neighbors and complete strangers reach out their hands and hearts, hoping to relieve just a little bit of the burden and the burden is lessened. It is a miracle to me that I have been able to move beyond the paralyzing fear to a quiet acceptance of the reality of the situation.

After six weeks of agonizing chemotherapy the tumor in my daughter’s lung has continued to grow. Next week she will start receiving a different drug; one that she was given two years ago, in the hope that it will be effective again. I will continue to wake up each morning expecting a miracle. 

Breast MRI

So after the second surgery we still do not have clear margins on the left side. This is not a good thing. The surgeon basically said that there are minute cells (DCIS, or ductal carcinoma in situ, in cancer speak) that are lurking, waiting to invade surrounding tissue at some later date. She wants them all out of me one way or another. Today I had a breast MRI. I was injected with a nuclear contrast agent, then required to lay face down while Thelma and Louise were carefully arranged into boob sized holes in the table. I spent approximately thirty minutes in a tube while the machine did it's thing. It was extremely loud, even with the ear plugs provided. In spite of the noise I actually almost fell asleep at one point. The noises were kind of hypnotizing. The doctor is hoping that this will show the extent of the cancer cells that are still hanging around. If the scan lights up like a Christmas tree Louise is a goner. If nothing much shows up we will have one more try at getting clear margins. Either way, I will be having more surgery. This is all very disheartening.

I should have the results of the mri in a day or two.

Depression

About every other day I am a hot mess. I wallow in the fear and uncertainty, just wanting to be done with the whole ordeal. On the alternating days I skirt the edges of the black hole that beckons me. I keep busy with

Asking For Help

I think it starts when we are three or so, and we stubbornly say "I do it mysewf." We want to believe that we can take care of ourselves, our families, our finances without help from others. That's a very good practice when life is puttering along in an uneventful manner. It's admirable to be independent and self sufficient. However, it becomes a handicap when your ship is sinking and your lifeboat has a gaping hole in it and the bright orange flotation device you have strapped on springs a leak. There comes a time when it is okay to ask for help, to accept help that is offered. 

When people ask what they can do my tendency is to say "Oh, I don't know, there's really nothing. Just knowing you are here for me is huge." Meanwhile, we are eating crappy food because I don't have the time or energy for anything else. And the cobwebs and dog hair are taking over. And if the health department inspected our bathrooms we would probably be cited for some violation of standard cleanliness practices.

I have had to overcome my reluctance to accept help. It has required me to humble myself and admit that I cannot do it all. Imagine that - I cannot take care of my eighty-one year old handicapped father, my daughter going through chemotherapy treatments, her children, all of our animals, the house, the meals, the shopping, the cleaning - and undergo cancer treatment myself. My husband thinks that he is Superman and that he can take care of us all and I admire his determination, but I do not want him to burn out from the stress either.

A friend recently suggested that maybe if I ask for help I am admitting that it's all really happening. I suspect that there is some truth to that. Denial can be a wonderful defense mechanism, but it's not working very well for me at the moment. Reality just keeps hammering away at me.

It all comes down to control, and I have real control issues. Just ask anyone in my family. When I allow others to help I have to let go of control. Well, I am letting go. I am over thinking that I need to clean the house before someone comes to clean for me. I will not obsess over whether the meals we are given are made with the finest local, organic, non-gmo ingredients. I will trust that someone else can actually deliver a child to school as safely as I can.

I am reminded of a joke I heard long ago. A woman's house has flooded and she has moved to the second floor. Someone comes by in a rowboat and shouts into the window, "come on, I'll row you to safety." "No, says the woman, God will save me." The water comes higher and the woman moves to the roof. A helicopter comes and a rope ladder is thrown down. "Climb up!" says a voice from above. "No" she says, "God will save me." When the woman drowns and faces her maker she says "I believed that you would save me!" God says, "I sent a rowboat and a helicopter, what more did you want?"

My eyes and heart are open. I am on the lookout for rowboats and helicopters.

The Oncologist

I spent yesterday morning at The Healing Nest, having my first massage as a client. I never thought I would be going up the stairs of that beautiful place for anything other than a tour. It was always me sitting downstairs in the kitchen yakking with those crazy women while my daughter went up for treatments. As I lay on the massage table, with soothing music playing and warm loving hands rubbing away the tension, I was so very grateful. Grateful for the incredible beauty of these volunteers who give so much to ease the pain and worry of women going through treatment for cancer. After treatment we were served a beautiful lunch and shared our cancer stories.

In the afternoon my husband and I met with the oncologist that my surgeon recommended. I liked him immediately. He sat right down in front of us, looked me square in the eye and began to explain all of the details of my pathology report. He said that I have the best combination of results - estrogen/progesterone positive, HER2 (human epidermal growth factor receptor 2) negative. This means that hormone suppressing drugs can be used to prevent the cancer from recurring. The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way. This is not the case with my cancer, and that is a good thing. HER2 positive cancers are more likely to spread and/or recur.

The doctor recommended chemotherapy, followed by radiation five days a week for six or seven weeks and then hormone therapy which will continue for 5 - 10 years. He explained two different chemotherapy regimens that he feels would work for me. The first one is twelve weeks long, with an infusion every three weeks. The drugs used would be taxotere and cytoxan. I immediately ruled out the second regimen that uses drugs which can cause leukemia among other problems, and would be twenty weeks long with treatments every week. Typical side effects of each regimen are fatigue, increased risk of infection, nausea, neuropathy, sores in the mouth and hair loss. I really don't like to consider suffering from any of these maladies, but if it will increase my chances of survival I will do it.

I asked the doctor for some statistics regarding what benefit chemotherapy will offer me. He stated that with no chemotherapy my cancer is about 30% likely to recur. With chemotherapy it is only 22% likely to recur. So I can go through twelve weeks of poisoning myself to gain another 8% chance of no recurrence. If he had said 50%, even 25-30% I'd say it's a no brainer. I am just not sure that 8% is enough gain to justify all of the crappy things that go along with chemotherapy.

I need to completely heal from the surgery before starting chemotherapy, so I have some time to think about it and do some more research. He wants to see me again in four weeks. I left his office feeling empowered. I was armed with information that will allow me to make decisions about my treatment that are based in fact and not just fear, which is tough because either choice scares the crap out of me.