Healing Journey January 2005
January 8 • Aloha At Last!
Another long one…skim if you wish.
First, let me tell you that my health is great. I am feeling very strong. There was a cold going around and it tried to catch me but I got away. I had threats of sore throat and was sneezy for a brief time but I brought such a fine herbal medicine chest with me that the bug left as quickly as it came. I have managed to keep up with my herbal formula while on this trip and I know that it continues to help me rebuild my immune system and strength. I have also been taking it easy and resting when I need to. Now on to the story….
Missing in Action? (Almost a month since my last entry.) Well, it’s been quite an experience here on the islands. I landed on the Hilo side of the island for my first week. Before I left Santa Cruz I was working on the Saso family calendar for 2005, a job that my brother Chris and I share. I was in charge of July thru December. With all of the busy-ness of the concert and getting ready for the trip to Hawaii, I didn’t finish my 6 months before I left. So I sat in the Oakland airport working on July, August, September etc. I figured that when I reached Hawaii, I would find an internet cafe somewhere with a high speed connection and ftp the files to Chris for printing.
Much to my surprise when I went to fire up my powerbook on the second day or so, alas! no power cord. I couldn’t believe it, or rather, I could believe that forces beyond my self had another plan for me. No technowitchery! Next I went to use my digital camera and to my second surprise, it just malfunctioned. I could trick it into taking a few pictures at first, but slowly but surely it lost all functionability. Let me take a short diversion here to show you one of the pictures that I did manage to take before it gave up completely.
Here you will see that my hair has started to grow back. I am loving running my fingers through my hair or is that–across my hair? Anyway, back to our story. By now I am figuring that Pele is having her way with me. I was relieved to find my second battery which had hidden from me at first. I had only 12% left on the first one and the computer wants to shut down at about 7%. The next step was to find a high speed connection.
I looked in the phone book and located one in Hilo. Lehua let me use her rental car and I had a very successful time getting lost in Hilo. I was completely disoriented. With 4 planets in cancer, I suffer from travel-disability and have a longing for home. I finally found the place and then it was a race against the clock. I knew I had only about an hour left on the battery. I won’t go into the details but it took every last ounce of my energy and the batteries power, not to mention all the cleverness I could conjure up. I finally succeeded in sending pdfs that Chris could open in Photoshop and add missing pictures.
Next I went back to the rental car, sat down a minute, then decided to leave the car there and go on another nearby errand. Got out of the car, locked it up, forgot my hat…oops! the key is in the car. LUCKILY, I had AAA and could call to get help. Which I did. Meanwhile I called my friend Shana who lives in Hilo and asked for her help in getting myself free of the Hilo maze I had wound myself into. She was such a calming influence, explained it well, and suggested I go to the park across the St. and check out the Banyan tree. As I was finishing my conversation with her the tow truck drove up. The guy got out and proceeded to do his thing as I searched for my AAA card which I just had inside the Internet Cafe but could now find nowhere. Lucky for me, when he finished he just said, “Thank you ma’am” and was on his way.
Tears rising to throat level, I headed back to the cafe in search of my card. As I turned the corner, the guy in the shop was coming my way with card in hand. I headed to the park to sit in the arms of that ancient majestic Banyan tree and have a good cry. It was just too challenging of a day not to.
I ended up finding my way back to Lehua’s only getting lost 2 or 3 more times. I surely felt that I was going thru a major Pele initiation.
The other thing that was happening from the 2nd day on, was my body’s experience with the new medication, Arimidex given to me by the oncologist. Because I tested hormone receptor positive, and am postmenopausal (thanks to chemo for finishing the job) I am candidate for hormone suppression since estrogen can “feed” cancer cells. (An over simplification, I am sure). What was happening was that I was having very bad stomach cramps, no energy and “bad dreams” accompanying poor sleep. It could have just been the trip, but after 3 days I called the nurse and decided to stop the meds. In fact, I have chosen not to continue while I am here and perhaps not until after surgery. I will also be looking for a natural alternative to this $9-a-day pill.
Leaving the wet side heading for the dry side
On Winter Solstice, Lehua and I headed over to Pepe and Shivani’s place in the small fishing village of Milolli–about an hour or so south of Kailua, Kona. That night we hiked into the nearby beach, Honamolino to spend the night. We did a Solstice Ritual on the beach and spent a lovely night there.
The next several days were filled with beach outings and some travel to the Northern tip of the island to Hawi with Anne, David and Amber. After returning to Milolli again, we took a trip to the beach next to the “City of Refuge,” called Honaunau. When we arrived at the beach we were informed that the dolphins were out there and we should put on our gear and head out. This was my first real time snorkeling and I followed Calli, who had much more experience. We swam way out there and I was a little freaked out with nothing to hold on to and concerned that I wouldn’t have the energy to maintain so far from shore. But it worked out fine, when I saw that I could use the fins to stay afloat without a lot of effort. My experience with the dolphins was somewhat or more… distracted by my inexperience with the gear and swallowing gulps of salt water. It was, however, so amazing to look down and see the dolphins far below. There were about 30-40 in the pod and they stayed in the bay quite a while despite the fact that they were being chased by lots of humans. They didn’t really seem to mind.
As time went on, we were joined by more friends in Milolli. Other musicians came and we jammed and sang–food for my soul and melodies on the lanai. A highlight.
Back over to Puna, the wet side, for New Year’s Eve– a mellow evening with toasts to the new year. Next day was one of the most fun things of the trip. We went to the warm ponds where some of the group went swimming. The road that led there was the most beautiful road I have been on for the whole trip. It was so lush and hanging with the kind of vines that make you want to play Tarzan and Jane. At least, that’s what it made me feel like and I said so as we headed down the road leaving the place. TJ was kind enough to offer to pull over and I said I could pass in consideration of time since we were late to where we were going. He insisted we had time and pulled over. I jumped out and grabbed ahold of one of the floor-length hanging vines. He cautioned that I should give it a yank to test the strength–which I did. I then proceeded to have a good swing. I move to another vine, gave it a yank, then gave it a swing and much to my surprise it gave way and I landed on the ground. It was the fun and funniest thing to happen to me in a long time and Calli, TJ and I had a great belly laugh that went on and on.
Meanwhile, I heard that Michael Franti was playing on Maui in a small club and I started dreaming of how I could escape the commune life, hop over to Maui, rent a car, and see the show. Then, low and behold, all things fell into place and I have been at Raven and Caryle’s place in Haiku since the 9th. I saw Michael perform with a couple of local musicians at Happas in Keihi last night (Jan 7th). I almost ended up on stage again as he pointed to me when he asked for a dancer, but another woman jumped up before I could go. I was actually relieved as he asked her to do an interpretive dance to the song he was playing and that would never have come close to the experience of dancing with Michael himself on the stage as I did in SF. However, after the show, I did talk to him, telling him about my webstory but more importantly, about the song I wrote that’s just begging to be performed by him. He gave me his email address and said to write to him about it. I am thinking that perhaps one of these days I will meet him in SF where he lives so I can sing it for him. Or maybe it will be back in Garberville where he occasionally comes to perform.
Tomorrow I fly back to the big island in the small 9 seater prop plane. On the way over, I realized how much I love to fly. Even in such a small aircraft I wasn’t afraid and found the experience exhilarating. A couple more days and then it’s back to home on Jan. 11th. We’ll see what the last couple of days bring.
With tentative surgery scheduled for January 18, I shall have more to report soon.
Happy new to every one of you
January 15 • Surgery date confirmed
I will be going in for surgery this Tuesday, January 18th at UCSF. As you might know, when I had the breast lumps removed last July, the surgeon in Fortuna did not get clean margins. In other words, there were still some cancer cells left in the breast. This is the main reason for this surgery. I have heard from many people at the Breast Care center at UCSF, that Dr. Cheryl Ewing is the best and my experiences have been quite positive so I have a lot of confidence in her.
The other procedure that will be performed, is a Sentinel Node Dissection. Even though Dr. Ewing doesn’t feel any enlarged lymph at this time, she will perform a biopsy to rule out the possibility that the cancer has traveled outside of the breast. At 2:00 I am scheduled to go to the Nuclear Medicine Department where the skin around the site of the (former) breast cancer will be injected with a radioactive material (technetium sulfur colloid). The material will move thru the skin’s lymphatic channels and a special scan called a lymphoscintigraphy will help the technicians determine the location of one or two sentinel node/s. They will then use a marker to mark the location on my skin so that when the surgeon does the lumpectomy, she will be able to remove just one or two lymphs to determine if they have cancerous cells.
The scheduled time of the surgery is 4pm. I have been told it will take about 2 1/2 hours. It may not take this long however, because originally they were going to do a “radiation boost” during surgery as I wrote about before. As it turns out, the radiation Dr. and crew had me down for 8am while the surgeon had me scheduled for 4pm and it looks like the schedules cannot be changed. (I don’t want to wait the month it would take to reschedule the surgery.) So it has been decided by fate and miscommunication that I will not have radiation at the time of surgery. This was going to cut the post radiation time down to 5 weeks instead of 6 and have some other implications as well. It has only been performed on 6 people at UCSF, however, so they have no data on long term side effects. So I accept this as what is meant to be for a reason.
I have been questioning the radiation but the statistics speak loudly in favor. Without it, the chance of recurrence in 5 years is 30-40%. With the radiation, I am told, it is somewhere from 2-10%. Time will tell for certain what my path will be. This is a difficult part of the process. Making decisions about what to let them do to me, how cautious to be, to keep it from coming back. I know for sure that I don’t want to go through this again, so I find myself leaning toward doing it all now to be as sure as I can that it doesn’t come back. Anybody want my shoes for awhile?
Today was a hard emotional day. I just want it to be over. I am ready to go home, to return to Garberville and “normal” life. Today I feel sadness, I feel the other side from the “strong woman” who accepts her fate. I still am and I still do, but darn, this is a lot to take. Thank you all for being with me during this time with your prayers and love. If it works for you on Tuesday, please light a candle, keep me in your prayers and see me disease free.
I will let you know what happens.
With much love,
January 17 • Spirits are lifted
After ending the last journal entry by sharing about my sadness, I must follow up with this quick report. I spent only a short time in that place–the necessary place–the one that brings balance to life. The one that is important to express, lest it get the better of us in unseen and unrecognizable ways. My spirits are lifted again.
I have used the following analogy before and it comes to mind again. I see bleachers going 360 degrees around the operating room. The ceiling is a domed stained glass window of magnificent healing color. I picture all of you–my family, friends, loved ones sitting in those bleachers surrounding me, your candles lit sending healing love and light to guide the Dr.’s skillfull hands resulting in a perfect surgery. And when the biopsy results come back, Alas! only healthy cells. Thank you for being with me, I feel your love and it makes a difference.
My friend Soaring just sent me this info about tomorrow:
Turns out your hospital day is a very auspicious one. The Mayan Elders of Guatemala are calling forth to humanity to pay close attention to the messages being sent forth by the mother earth and to immediately take the actions they have been calling for, to unite in an effort to bring balance again upon our planet. There is a specific call for people around the world to join in prayer, meditation or whatever method of spirituality one engages in to unite on Jan 18 at the time of our local sunset (approx 5:30-6pm. This date is B’elejeb (9) Keme according to the sacred Mayan Cholq’ij calendar and has the potential for protecting humanity from disaster.
There will be many major ceremonies in the Mayan communities for this purpose. It is a strong message, not meant to drive us to react in fear, but as an opportunity for humanity to rise to the occasion and come together along the strong lines that unite us and overcome the obstacles that divide us. More info on www.SacredRoad.org.
January 21 • We Rocked the Hospital!
I felt very prepared for this day. I awoke around 5:30 so I could finish eating by 6:00 for the anesthesia. I had lots of time to do last minute things before surgery. Vivian came shortly before 10:30 and we headed to UCSF, Mt. Zion hospital on Divisidero for my Sacred Surgery #2. In the car, I took my last sips of water by noon, wondering how I was going to make it the next several hours without any liquid as my habit for a long time has been to drink lots of water. Turned out, it wasn’t that bad and with all the distraction to come, I was able to take my mind off of thirst.
After arriving, our first stop was to visit to the beautiful meditation room at Mt. Zion. We had some silence and then some toning, and more grounding and centering, praying and preparing. Next a visit upstairs to see EJ, a receptionist in the breast care center who made such a personal connection with me during my visits there. She always knew my name and was very helpful with appointments etc.
Then it was off to the hospital side of the building thru the secret corridor that connects the clinic side to the hospital side. We checked in shortly before 1:00, the time they had told me to come. We sat there for about 30 minutes and I wondered if they told me to come so early in case I was late–as they hadn’t called for me yet. I got the feeling to turn my cell phone back on and a few minutes later, it played it’s song for me and on the other end was one of the hospital staff wondering where I was since I was expected at 1:00. I told them I had checked in before 1:00 and shortly a nurse came in and called my name. A slight miscommunication from one department to another, but luckily I turned my cell phone back on so they could find that I had been sitting just down the hall the whole time they had been waiting for me.
I was then led to the pre-op room, given a bag for my clothes and handed a hospital gown to put on. Two nurses came in, took my vital signs, and asked various questions. At this point my mom called and wished me well. She was my last touch with the outside world before surgery. One of the nurses attempted to put in an IV, but the type was new to her and it turned out that it didn’t quite sink in to the vein as desired. She pulled it out and the other nurse did it later. What I’ve noticed with the IV’s is that if the person has good confidence about doing it, they hit it right the first time. If not, it is not uncommon that they miss the vein. And thus it was.
We found out that we would be in this room until surgery, with a short visit up to nuclear medicine for an injection of the radioactive substance I mentioned in a previous journal entry. After getting this info, Vivian began to set up the altar. We pulled out the magic wand and passed it around so the nurses could check it out. It turned out that the magic wand was quite a passport on our amazing journey at the hospital. I carried it with me to “nuke med” and both of the doctors there checked it out–not to mention the folks at the nurses station as we passed by and others we met along the way and in the elevator. Someone remarked that it looked like a sling shot and I replied that one of the “nick names” it had been given was my “spiritual slingshot.”
This would be a good place to insert a picture of said magic wand. We had no camera at the hospital so these pictures show some of the altar items–but were taken afterward. I am including the magic wand from each side.
After being injected with the technetium sulfur colloid in the nuclear medicine department, I didn’t have to do the scan part where they would have marked the area for the surgeon so we headed back to the room. Instead, the surgeon would use a Geiger counter type of instrument to find the sentinel node during surgery.
When Dr. Ewing, the surgeon, came into my room, I asked her how she would know how much tissue to take to get the clean margins, “and just how many lymphs are you going to take?” With the clean margins, it was close to guesswork but she informed me that if she has to go back in (which she won’t) it would be about a 15 minute surgery to take more tissue. As for the nodes, she said it depended on my anatomy and that it would be one to three lymph. I asked her if I could take my magic wand into surgery and she suggested I leave it with my friend so it wouldn’t get lost but I could ask the anesthesiologist. At this time she also told me they were running about an hour late so my surgery would start some time after 5pm.
When the anesthesiologists came in, they were a very cheerful duo, Reed and Raphael, and were happy to let me take my wand into surgery and they would be sure it left the operating room with me. They both held it and asked about the charms. They also assured me that they would start up my iPod so I could listen to the playlist that I put together for the occasion. They told me they would be back soon to start the knockout meds in my drip. (my wording)
One other thing that happened with several of the nurses and drs. that came in, is they asked me to tell them in my own words what was going to happen and to which breast. I happily told them that the surgeon was going to go back into my left breast to do a lumpectomy to get clean margins and that she would also perform a sentinel node incision in which she would take 1-3 nodes. I passed the quiz every time. Most of them also wanted to autograph the breast in question–wanting to learn from past experience and not operate on the wrong breast–but missed out on this as the surgeon beat them to it when she came by.
After they left, I laid back and rested as Vivian sang to me. She told me afterward of her vision of the women by the river and raven woman and bear woman. (click here to read the poem she left me to wake up to)
After a while we began to sing songs together. We were in the middle of “I Turn My Light On” when the duo returned. Raphael started the “sleepy” meds in my drip. The words to my song changed to something like: “he put the meds in, I turn my light off and I sleep, sleep, sleep.” That’s the last thing I remember until I woke up in the recovery room.
Vivian packed up the altar and was able to reassemble it upstairs in the room that I would return to after post-op, thanks to the nurses who made it easy for us. Some time during my surgery, Jody, my daughter came and Vivian left. Here’s an aside: Later, Jody told me that she had gone in search of hot chocolate but returned with rice and miso soup. When the woman at the front desk who had tried to send her to a place to get the hot chocolate found out, she made her a cup right then and there. I gotta tell ya that EVERYONE at the hospital was GREAT!
I woke up in post-op, not expecting to see Jody ’till they took me to my room, but lucky for me, I was the only one there and someone went and got her and led her to me. This part is a bit fuzzy as I had been given a general anesthesia. I was told that I might have a sore throat for a few days from the breathing tube they had to put down my throat–which I did, but it wasn’t too bad.
I stayed there for a little while and then was wheeled to my room. There was a chair there that converted to a bed for Jody. They made sure to keep checking my “vitals” and they put “cuffs” on my legs that would contract and let go every so often to insure that I did not get blood clots in my legs. It was kind of a hassle to get up to pee but Jody was always there to help. Because of the lymph node dissection I had some pain that I didn’t experience with the first surgery. I took the vicoden they offered before I went to sleep and one more around 5am. That was enough of that and I only took one more prescription-strengh Motrin the next day. The small amount of discomfort was much easier to handle than the fuzzy head from the drugs.
Next morning we had visits from various people including Reed, the anesthesiologist. I asked him if we had fun in there and he said, “we always do,” and “did you?” and I asked “did I?” He replied that they were surprised that I kept the iPod headphones on the whole time and what was I listening to. I told him the playlist started out with a 12 chakra meditation, went into David’s song, “I love you so much” included my own singing, some Michael Franti and ended with Bob Marley. He commented that he wished they had all been listening in the room.
After waiting around for a while longer, they finally took my IV out, gave me paperwork and let us leave. Another amazing experience. Vivian told me later that she will never do surgery without a “magic wand,” and in her email last night Jody wrote, “I love you – you look so beautiful. I know I already told you, but I have been picturing your face in the hospital bed, you were glowing. You looked so strong & so alive. I have memories of pain & agony when I think of hospitals. You have shown me another way. Thank you.”
I return for my post-op appointment next Wednesday, Jan. 28, at which time Dr. Ewing will tell me that I am done with the “cut-up” phase and that there were no cancer cells to be found. I will confirm next week.
And so goes this portion of the journey. Thank you all for being there. The bleachers were beautifully lit up.
January 26 • Proclaimed Cancer Free!
Dr. Ewing came energetically into the treatment room where I was waiting for her with my friend Elvia, and exclaimed, “I have nothing but good news for you.” She went on to tell us that they ran extensive tests on the Lymph Nodes she had harvested and NO CANCER CELLS were found. They didn’t even find any cancer in the formerly “unclean margins” inside of my left breast. The chemo (and who knows what else) succeeded in eliminating all of the residual cancer from the first lumpectomy. “You are CANCER FREE!” I practically grabbed her and danced with her around the room–well, a good celebratory hug with her and I was surely dancing.
Of course, it was what I knew she was going to say, but to hear that it was the proven “western medical” truth beyond shadow of a doubt was music to my ears. She went on to tell me what a good job I had done and reminded me how nervous I was during my first visit to her back in July.
She checked out the wounds and confirmed my thoughts about how well they were healing. I told her of the sensations I was experiencing in my arm near my elbow and she told me that they were totally normal, it was the web reaching down into my arm from the lymph nodes she removed, beginning to create scar tissue. She said I might experience some pulling and slight discomfort for about six months while I heal. I asked her about the chance of lymphedema (swelling of the arm, etc.) and she said it was very unlikely. When one has an axillary lymph node biopsy with several lymph nodes, nerves and more tissue removed there is a great chance of lymphedema. I am so grateful to have escaped this procedure as it was recommended by my first surgeon up north.
I also talked with Dr. Ewing about hematomas. I told her I have been very careful to take it easy and not to strain so as to avoid getting a hematoma like I did after the first surgery. (I was in the garden pulling weeds two days after surgery back then.) She said, “We don’t do hematomas around here, and if you haven’t gotten one by now, you are not going to.” That was a great relief as it took from July to nearly November to resolve.
What a great day filled with such good news! I will be laying low for the next month while I heal from surgery before radiation, so February might not bring to many words to this log. Please pass on this website or my email address to anyone you know who might be going through a similar experience. I would be happy to–and feel called to–talk with people who might need a lift or some inspiration with on their own journeys.
All for now