Retreat For Peace

Radiation Rash

I now have a radiation rash on my chest. My technician calls them ‘speed bumps’ because the radiation is traveling at the speed of light. Everyone’s skin reacts differently to radiation, but I am told this is very common. It is more painful than it looks and is limited to the area seen in the photo. It itches and is starting to peel similar to a sunburn.

Last Monday, after 16 treatments, they changed my plan. For the next 2 weeks (10 treatments), radiation will be directed to the cavity from which the tumor was removed in order to let my skin recover. They call this narrowed field ‘the boost’. It is usually done at the end unless there are problems. During ‘the boost’, my treatments time is 4 minutes, almost half of what it was before.

After ‘the boost’, only 9 more treatments will be left (35 total) and with any luck, the rash will not get that bad again. Should end May 20-something.

Hospitality House

I am spending Monday through Friday in Sierra Vista and receiving daily mega doses of radiation in order to kill any cancer cells that may have been left behind after the lumpectomy. I love staying in the hospitality house provided free of charge by my doctor. Very luxurious compared to my one-room cabin. I have moved into the roomy master suite, which is almost as large as my own home. Check out the Sierra Vista sunset taken from the back door.

Sierra Vista Sunset

So, what is radiation like? It is painless, invisible and does major damage. The skin gets burned and cells die. Last week, the doctor offered me a prescription for a special $70 skin cream for radiation treatment. I told her I was using an Aloe Vera plant. She said there is nothing better to apply to the skin while receiving treatments than the Aloe Vera plant. So, three times a day: before treatment, after treatment and at bedtime, I slice of part of the plant and apply it. They say my skin looks good.

Straight Line Curve

The TomoTherapy radiation machine looks like a CT scanner. It has a huge drum that spins around my body with little jaws that open and close sending radiation at the speed of light to prescribed pathways. It sounds something like horses galloping around me and I find it rather meditative. During these 7.6 minutes, I imagine all of sickness and suffering in the world coming into this field of radiation and being blasted to pieces.

Radiation travels in a straight line and it is very important that the radiation follow the curve of the chest wall with minimal exposure to important organs like the heart and lung, which are just under the ribcage. The illustration may help to understand how it is accomplished.

I will be receiving 25 treatments over the entire breast, which will take me up to 45 gray on the radiation scale. Then I will receive 10 more treatments just on the area where the lump was removed and in the end I will be up to 63 gray on the radiation scale. That is a lot of radiation. I pray you will never have need for these levels of exposure.

By the way, I have been drinking a bottle of kombucha every day. Someone posted on facebook about its benefits during radiation. I am feeling great…

Today was the first day that the little radioactive killer beams were aimed at my breast. It was painless and not very frightening due to the kindness of everyone. Afterwards, Raymond sat down with me and explained that he just killed 2/3 of the cells in my breast. If there are any cancerous cells left over after the lumpectomy, they will be bombarded with radiation until they disappear into oblivion. Cancer cells are unable to repair themselves but normal cells do repair themselves. He said my whole body is going to go into overdrive to produce white blood cells in order to repair. He said I should start feeling tired about week 3 but this afternoon, but after treatment, I took a 2-hour nap.

The house I am staying at, is very nice. My suite has two single beds with a private attached bath. The one other woman in the house is a snowbird from upper state New York. Her suite is at the opposite end of the house.

Sierra Vista offers some enjoyable things. It feels like a big city compared to Dragoon. The wonderful library, with a coffee shop, (where I am now) is just down the street. Last night I treated myself to dinner at Outback Steakhouse, went to the mall and had a massage followed by a movie. Today I went back to the mall and took a chair yoga class. I think I will be able to entertain myself nicely here. A vacation of sorts.

The last week has been a little flurry of medical appointments:

• March 10 – Dr. Livingston, Medical Oncologist. In reply to asking what his role would be, he said, “I manage your medications.” Our personalities do not make a good team, so I asked my surgeon to refer me to another medical oncologist.
• March 14 – Dr. Nettleton, Radiation Oncologist at Cochise Oncology. She is nice enough and gave me some good advice. She has two complimentary hospitality houses for out-of-town patients like myself. I will be staying there weekdays during the 4 to 6 weeks of radiation treatment. How sweet is that?
• March 17 – Gina, Radiation Therapist at Cochise Oncology. Very sweet. Gave me 3 tattoos so that they can align the lasers properly every time I come in for treatment. She also did a CAT Scan of my interior space in order to have a baseline for comparison. It was very interesting to look at all the pictures. What struck me was how asymmetrical I am.
• March 18 – Dr. Susan Kratz, Medical Oncologist. She used to work at Cochise Oncology and now practices in Tucson. She is a delightful doctor who seems to understand my concerns and spent time answering my questions. I am going to enjoy knowing her.

The happy news is that I do not need to have chemotherapy. The survival rate is pretty good whether I have chemo or not.

Radiation will begin March 28, 2011. There are about 200 TomoTherapy radiation machines in the world and only 3 in arizona. I am lucky enough to have two within about a one hour drive. This is the most precise machine for breast cancer and the treatment plan will be drawn to avoid my heart and lungs.

Why do I need radiation since the tumor was surgically removed with clean margins? Well, it seems there is something called ‘seeding’. Cells are microscopic and it is impossible to tell if a cell was inadvertently left behind while the tumor was being removed. All it takes is one little cell to create havoc in the future. When a lumpectomy is followed with radiation therapy, the long term results are the same as if a mastectomy had been performed.

The decision I am left to contemplate is whether or not to take hormone therapy. It may increase my odds a little bit but hormone suppression drugs also have side effects.

Saw Dr. Lang on Wednesday. I am healing well. Turns out the lump was smaller than we both thought. It was very near the skin and we could easily feel it and both thought it was at least 2 cm. Size is important because it is one of the factors that determines the stage of cancer; 2 cm being the boundary between stage one and stage two. Turns out it was 1.5 and I am clearly stage one. She said sometimes the body will build a little protective wall around itself.

Between diagnosis and surgery, I did reiki by cupping my hand over the tumor while going to sleep at night. I explained to Dr. Lang what reiki was and how it worked. She showed interest and certainly did not discount these methods as accounting for a reduced size of the tumor. Also, while meditating during this period of time, I personified my angry cells and told them they did not need to be angry and that they were loved. I told them it was in their best interest to accept that love.

We are at a crossroads in the treatment decision tree. Do I need chemotherapy or not? The personality of one’s cancer seems to be as varied as each of our personalities are from one another. So far, 3 genes of my DNA have been tested:
HER-2 – negative
Estrogen Receptor – positive (95% strongly positive)
Progesterone Receptor – positive (95% strongly positive)

Dr. Lang ordered an Oncotype DX test on Wednesday. This test will take a look at 21 genes and calculate a recurrence score expressed as a percentage. It will expose the personality of the cancer so that we can decide if chemotherapy is necessary in order to arrest it. Results take 2 weeks after which I will see an oncologist on March 10.

Oncotype DX test is for people who are estrogen receptor positive and lymph node negative, which I am. Only 4% of the women in this category benefit from chemotherapy, so it is a very useful test. (Insurance companies will not usually pay for this test until after the post-operative appointment. Hence the delay.) I just got a call from Genomic Health, the company doing the test. The cost is $4,000+ and after insurance, my portion is about $700+. They said I income qualify to receive a grant to cover that amount!!! How sweet!!!

Wednesday, the day before surgery,  I was injected with radioactive material in order to locate the sentinel lymph node. If cancer cells are breaking away from the tumor, they travel via the lymph system. The closest lymph node is called the sentinel lymph node. It is more likely than other lymph nodes to contain cancer. Unfortunately, this radioactive material did not want to travel anywhere and even the next morning before surgery it still did not show up with gamma imaging. The doctor has a geiger counter, but I suspect that did not work either because she injected me with a blue dye, which is still visible on my skin. This material did lead to the sentinel lymph node, which was dissected while I was still on the table. It was found to have no cancer cells!!! The rest of my lymph nodes are in tact. I am so happy about this. There is a terrible side effect that can develop when many of the lymph nodes are removed called lymphodema. I believe I have a propensity towards this and now I don’t have to worry about it.

My dear friend and neighbor, Sherry, spent Thursday at the hospital with me. How wonderful to have her support. We spent over 10 hours at the hospital and the surgery took 4 to 5 hours. The lump was taken out. Some of the tissue will be used to develop a pathology report and some of the tissue was donated to research projects. I pray that some good will come from it. They are trying to develop a test where someone can pee in a bottle to determine if they have breast cancer rather than doing an invasive biopsy. My follow-up appointment is February 9 and I will know more then. For now I will rest and recuperate.

Breast cancer seems to have gone high tech. The HER-2 gene is responsible for making HER-2 proteins.These proteins are receptors on breast cells. Normally, the HER-2 receptors help control how a breast cell grows, divides, and repairs itself. In some cases, the HER-2 gene becomes abnormal and makes too many copies of itself. It is then amplified.

The ratio of HER-2 genes (which have orange signals) to Chromosome 17 (which has green signals) are determined using a FISH test (flourescence in situ hybridization). The results ranges between 0 to 3. The neutral point is 2. Less than 2 is unamplifed and my test results were 1.4. Unamplified is very good news because the chances of reoccurrence are less likely. Amplified is associated with shorter disease-free survival and poorer overall survival.

I saw Dr Lang last week. She confirmed the suspected diagnosis of invasive ductal carcinoma (IDC). This is the most common form of breast cancer. We have scheduled surgery for January 27th, so I won’t be beginning retreat on the 28th. She wants me to heal for a month before I begin 5 to 6 weeks of radiation treatment.

Seventeen years ago, I had a lump in my right breast. It turned out to be a harmless cyst and went away rather quickly. Before the diagnosis, I obsessed over it. I thought I was going to die. My mind was always wrapped up with ‘me’ and I could not stop worrying. Eleven years ago, I began meditating and studying Buddhism. As a result, my mind has changed so much. It is nice to be able to measure the progress. I am not obsessing, and am taking things in stride. More about that later.

Dear Support Team,

Yesterday on my way home from the doctor’s office, I was awestruck by the most vivid rainbow I have ever seen. It was like the rainbow itself was the source of light. The speed limit was 75 mph but the traffic was all going much slower than that. I saw it as a good sign.

I writing to let you know that the start date for my retreat has been extended because of medical reasons. The countdown calendar on my computer displayed ’17 days until Great Retreat’ when I found a lump in my breast about the size of a thumbnail. Since then, I have had an ultra-sound, a mammogram, and yesterday I saw a breast surgeon. Next Tuesday a biopsy will be performed.

The results of the ultra-sound said, “The 1.5 cm irregular mass likely represents carcinoma and appears highly suggestive of malignancy.” My doctor said that means about 90% sure. Pray for the 10%. Either way, it has to come out. My doctor suggests a lumpectomy with follow-up radiation. We won’t have a final treatment plan until after the results of the biopsy have been reviewed.

The good news:

• If it is cancer, it is Stage 1.
• I was not already in retreat when I found it.
• I can still go into retreat when the issue is resolved.
• Dealing with impermanence may actually help my retreat.

I have a wonderful female surgeon with compassion, a dynamite resume and I really like her.

The doctor seemed very positive about a successful outcome. I share her optimism and feel very well taken care of. The next possible start date could be January 28, 2011 if I am far enough into treatment. I will be in touch with you and let you know the progress. Feel free to contact me with any questions. I am so grateful to all of you for volunteering to help serve my retreat.

With love,

Ekan

Flute

August of 2009 I went on a road trip with my old Bowie, AZ house-mate, Keith. We met up with his son and a friend at Gila Cliff Dwellings National Monument in New Mexico. A ranger was talking and passing along information to us but the sound of a magic flute called to me and I found myself inside the visitors center under a spell of heart connecting melodious sounds. “This is what I need during retreat,” I said to myself. I got the flute makers contact information. Turned out he developed sensitivity to exotic woods and no longer made them. I got other leads about other flute makers and each time they were a dead end.

Anyone who spent much time around me, since I first heard the flute, knew that I wanted a Native American flute in F# for retreat.

The Magic Flute

October 19, 2010, we had our annual ceremony to put the snakes to bed. Two women came together: one from a reservation in the Great Lakes area and one from Dallas. I asked Lorraine, from Minnesota, to help me find a flute maker. Overhearing the conversation, Mary from Dallas, went to her truck, returned and presented me with the most beautiful flute I have ever seen. “This is to honor your commitment,” she said. I was speechless. All I could do was hug her as the tears streamed down my face. By the way, It is F#. Thank You, Mary. I will never forget your kindness.