Our Birthday 2007

December 2o, 2007

hey you, i guess i have been out of touch but do think of you and am thankful for all your thoughts and prayers.... today has been a tough one being Anne's and my birthday but i received a ton of love from the kids.. had lunch with Maxine and dinner with the neighbors... things are a bit better... my state of mind is uncertain these days but am able to keep focus around the important things .. family, work and friends my heart is still very broken but there seems to be a shift towards wholeness through a good deal of spiritual surrender and internal forgiveness... there are dark times when i feel like i can't go on but the light always breaks through to renew my hope and lift my spirit.... i guess the only thing we can ever really know is that everything changes constantly...... we have to be able to recognize and honor that continuum of change as an integral part of our existence... it is our evolving identity which requires our constant attention.... I guess that could be what love really is... somehow that fits at least in my thoughts in this moment... i hope you are well and feeling free and happy

love D

Above is the email I wrote to my friend Timmie who is a survivor of breast cancer and has been a constant support through it all. I wrote the night of the 20th after a beautiful and soulful celebration with Angela, George, Nina and the kids. We had dinner and home made chocolate ice cream. We sang to Anne and me. We laughed, hugged and remembered. The house was filled with love. I felt loved, deeply so, and it was good medicine for me, as the morning had been heartbreakingly painful. Maxine finished class at noon, that day, and took me out to lunch. What a blessing that was. It was a gift without measure. We sat and talked openly and radiated that inexplicable love bond that exists between parent and child. The darkened sky in my heart began to open and some light broke through. We went to whole foods to shop for dinner.
She took off to meet friends and I went home to prepare for the evening. Nick and Sofia arrived home from school and began to help prepare. More light came streaming in. Angela and George arrived just after six. There were some much needed hugs given all around and Angela jumped right in to help with the cooking. Nina and her youngest son Demetri arrived and by then a wonderfully festive feeling was permeating the air.That feeling grew as the evening progressed and Anne's spirit was very much a part of it all. She was right in the room having fun with us all and was pigging out on the ice cream through me. It was really good and according to Angela the best she has ever tasted. George and I played guitar while the kids were having fun and conversations went on. Wendy my other neighbor stopped in to add more cheer. An assembly line clean up and sweet sweet goodbyes. Anne stayed. I felt her presence so strongly. That night I slept the best I had in long time.

It was so good to feel Anne as I did that night. I was in Florida earlier that week visiting my father, sister and her family. It was my first trip back since my mom died in February and my first physical contact with my family since Anne died. I felt like I was caught in the emotion blender with deep sadness and sweet tender feelings swirling through me at the same time. When my dad and I went to Venice to visit Mary Brent and Harry the blender switched to liquefy. I became totally unglued remembering Anne and my "meet the parents trip" in November of last year. It was wonderful to be with Mary Brent and Harry. They took us out to lunch at the Crow's Nest. But it was hard for me to hold up under the pain of her not being with me there. When we were there last year I saw an almost miraculous shift in Anne's spirit. She seemed more at peace. She loved it there. She loved the warmth of the gulf water, the sun, the beach and she loved being cared for by her parents. It was wonderful to see her feel so at ease and care free. It seemed to be a salve for her wounds and I was glad for her. The visit with Mary Brent and Harry was very important and healing for me and I felt it was the same for them.

There is so much I learn and grow from experiencing the dark despair and pain as it always leads me to the light. A light which shines on a part of my inner world that I had not seen before. I am in a love/hate relationship with this pain process but I don't know of any other way and it does seem to be getting just a bit easier.

Love to one and all,

Dennis

Letter to My Beloved

My Dearest Annie,

It is now over two months since I last felt your hand in mine, since I heard your voice, since my heart sang with the joy of your embrace. I miss you so. It is hard for me to believe you will not be coming back to me. It is hard for me to be in this life without you. I can not find the opening in my thoughts, in my mind , or in my heart to comprehend why you are no longer with me. How do I bring myself to understand what has happened to you? Where are you? There isn't a waking moment that you are not in my thoughts. I relive, over and over, the words you said, the experiences we shared, and the dreams we dreamed. I remember the times you filled my heart with exquisite joy and the times you made my heart ache , the times you enfolded me with the sweet intimacy of your being and the times you pushed me away. But deep inside I always knew you loved me. I always knew you had a hard time showing me just how much. How do you experience me now? I continue to hear your voice and think what you would say about the clothes I am wearing,the food I am eating or the condition of my kitchen floor. I was at your house on Monday. It was bitter sweet. The furniture was gone, the walls were bare but the memories remained. I cleaned the bathroom with the same obsessive fervor you put into keeping your home operating room clean. It felt good and I did it because I knew it is the way you wanted to return the house to Jane. Nancy had done the same with rest of the house and the garden. Did you hear us and see us when we said our prayers to you and final goodbyes to the house that housed your spirit and your body, that held the memories of our first kiss. How and where will I find you? I hold fast to the memories of our togetherness, to the scent of you through your bathrobe, to the sight of you in photos and in the feel of you in my heart. This heart that lives in the disbelief of your absence. It searches unrelentingly for any sign of your return for it can not comprehend the loss of your being. It can not comprehend that this world can exist, that itself can exist without the well of love that you provided. I know you struggled to open your heart to embrace the world and me without condition or judgment, to love freely, unconditionally and completely. I cherish those moments when the walls between us magically lifted and we enfolded one another in the sweetness and purity of our souls. This is where I find you still. This is the place that remains forever in my heart.The physical memories may fade but those moments, when our hearts and souls joined in the innocence and simplicity of our being, will burn brightly in the heavenly skies of my heart forever. I hope that you are at peace, that you can still feel my love and that this new journey has brought you the freedom of soul you so longed for. Perhaps as my heart learns the language of the eternal soul I will find you have never left at all and have just been waiting for me to catch up.

Te amo,

Dennis

Thanksgiving / Anne Bocchino Gift Fund

I am not certain if anyone is checking the blog any longer but just in case I thought I would write about the first of the holidays, Thanksgiving. It was no surprise that with each day closer to the holiday I felt an exponential increase in the heaviness in my heart. The celebration was at Russell's where it was last year. Last year's celebration was the first official holiday Anne and I celebrated as a couple. It was when I learned that being a "push 6" Anne was the first one up to clear the table and clean the kitchen. She made a subtle comment about my videoing the clean up activities with the implication that I was not actually involved in helping. I chose to ignore her carefully worded statement and am glad I did as it is the only video of her that I have. Yesterday was quite lovely in spite of my heavy heart. There was an over abundant and sumptuous meal prepared by the young adults and a few of us old folks. Owen cooked the turkey,Lucy baked pies made mashed potatoes and yams, Suzie made rolls from scratch Tally made vegetable dishes.They spent two days preparing this incredible meal. I know Anne was excited by the quantity and abundance of flavors. We spoke our gratitude for one another and toasted Anne. There was a place for her at the table. What took two days to prepare was consumed in about 30 minutes save dessert which came after the slide shows and cleanup.
There was certainly an air of joy at the end of the day. I am certain Anne was part of it all and smiling the entire time but I did miss her so as did everyone there.

I am debating whether or not to continue writing on the blog. I suppose if no one is reading it then it serves only as an outlet for me. That's OK, but it changes the purpose.
Any thoughts???

A fund has been set in Anne's name at UCSF. All donations collected will be distributed to families who need financial assistance while coping with blood diseases such as leukemia.
It is called the Anne Bocchino Gift Fund and is being managed by UCSF
If you wish to make a tax deductible donation checks can be made to UCSF in any amount and mailed to me. I will forward them to UCSF in bulk to the fund.

Dennis Puorro
231 16th Ave.
San Francisco, CA 94118

Love to all,

Dennis

The celebration

I think I can write this, but this past week I have been digging out from under an avalanche of emotion. While the celebration was just that, a beautiful unfolding of the love Anne had both created and participated in with all those present, for me there was no escaping the ache of missing her. I had spent the night before, in the bed we shared at her house, in her room, with her clothes in the closet and her books on the night stand. The same comforter was on the bed. I had hoped to feel her right there in bed with me but didn't. I was overwhelmed with emotion and pain. I could not connect to her or myself. I was hopelessly lost. Some how I managed to fall asleep and only now do I realize how unbearably difficult that night was. I focused on the next day and pushed myself to get through the night. When I woke and reread the final draft of what I had written to say at the celebration, it fell short of my expectations. My thoughts were disjointed and I could only hope that I would be able to infuse the feelings I wanted to convey spontaneously while speaking. As the time for the celebration drew closer my emotional state intensified and turned to panic. I was going to spoil this day of days for Anne and everyone because I was over run by emotion.


People began to arrive. The hall was splendid, elegant, done in pinks and lavenders of fabric and ribbon. There were flowers everywhere. At the back of the hall was a stage the entire front section of which was turned into a magnificent alter of fabric, flowers, candles and accented with elegantly adorned Thai umbrellas and a poster size photo of Anne. In the side room off the kitchen were several tables laden with food and drinks. There was a professional sound and projection system donated, set up and operated by Angela's new found love George. There are no words possible to extol the efforts, love and dedication which he poured into the creation of the DVD and presentation of this event. There are so many to thank but it seems that the creation of the day for Anne was all the thanks anyone really needed or wanted. And it was a beautiful day both inside and outside. The air was clear, warm and sparkled with the hope that sunlight brings. It was a perfect day and I have no doubt that Anne had seen to it.

It was time to begin, at least the "formal" part of it. I approached the microphone and confessed my state of mind. I began to speak/read slowly, thinking "Anne help me out here".
She did . I felt her hand in mine, I was still nervous but began to tell the story of our meeting and the words flowed and the thoughts connected. I managed to get through without spoiling everything, although there was so much more I wanted to and needed to say. Joy Willow played piano and sang a beautiful song she had written to honor Anne. Then Russell recited with impressive eloquence, two poems by Mary Oliver whose work Anne loved. Joy made another beautiful offering in a selection called "Spirit Fly" There was a stillness in the room when Owen got up to play. We were all with him. We were all directly connected to Anne through Owen and Lucy. In some ways this day, also was about them. As Owen prepared to play he said he wasn't sure if he would be able to in his emotional state. Laura was at his side. He played magnificently, two Bach violin solos the composer wrote in honor of his wife after she died. I remember sitting in Anne's living room. Owen, violin and bow in hand, closed the door behind him to the room where Anne lay wrapped in silk and played the same two pieces for her. I was so deeply moved by the presence of his being and the deep passion that vibrated through the strings to fill the air. We all felt it that day. We were all grateful for this beautiful gift. Then our angel, Angela, spoke from a place inspired by the heavens. She captured the essence of Anne's spirit that only the love, long friendship and the shared intimacies of a woman to woman relationship could. I was in awe of how deeply she understood Anne and held dear all her idiosyncrasies. How she revered her strengths and accepted her flaws. I thought, who could follow that? But people did. And each did beautifully adding more and more to the ripple of love that was Anne as she spread through the room out into the universe. Everyone spoke many without words but instead with feelings that resonated as loud as the amplified voices through the speakers.

David Field honored us with lovely background acoustic guitar music while George set up for the DVD. The lights were dimmed and we were taken into a dimension of exquisite beauty and exquisite pain. Nothing could capture her life in all its true beauty as did this sonata of visual images flowing in synchrony with the emotive music they moved to. We all wept. Every last one of us. My Sofia wrapped her arms around me to offer comfort as I wept uncontrollably (inside I have not stopped ). The room was still vibrating with quiet sobbing after the DVD had finished. Nancy got up to lead us in a candle lighting ceremony to bring us full circle back into the light. We each had a candle. No words were spoken only the passing of the flame from one to the next until all were lit. We held a short time for reflection then did what I know Anne wanted us to do from the beginning. We ate and drank.... for a long time.

This continues to be a dream from which I hope to wake and see her there and perhaps that is how it works. We move form one dream into the next. So when I move from this dream into the next I will find her there...waiting.


My love to you all,

Dennis

on the way

I did promise a full report of the celebration and it will be forth coming. I am just too exhausted to write it this evening but didn't want to leave everyone wondering. It was one of the most heartfelt, love infused, joy making, heart aching, events I have ever been a part of. It was truly beautiful and honored our Annie as she so richly deserved. There will be a DVD so you will be able to see and hear those who spoke as well as the musical offerings.

More to follow later.

Dennis

Emerging Realities

The days and nights have taken on a strange reality for me. They emerge and merge and I go drifting through them performing my regularly scheduled duties but the color is dulled the tastes are less distinct. My sleep no longer is my sanctuary as it has been all my life. There is no escaping this ache I carry. How is this possible? Where does it come from? I have loved with all my heart and been loved in return . Why is there such pain? My heart is not empty I can still feel her with me. Yet the pain is there. I am told that it will take time and I guess that is so . But time for what to happen? Perhaps the memories get replaced with new ones. The old ones begin to fade. The feelings may become faded as well. I don't know. But I am beginning to realize that the experience Anne and I went through was traumatic. With all the beautiful moments we shared, the deep intimacy, and oh so necessary bonding in the final analysis we faced and endured a reality that was frightening. I am beginning to understand the incredible courage that Anne mustered from within to take on this unthinkable edict rendered her. I don't know if she was ever able to take it in fully, but as the haze in my mind clears, as my heart regains its balance, I see and feel the overwhelming weight she must have been under all that time. It leaves me speechless. I am numb from the thought. My heart aches. I feel so badly for you Annie. My greatest hope is that you always felt surrounded by love and that you feel it still. Then my heart will be at peace. I guess in some ways that is the source of the pain that I feel. I need to know she felt and feels love. That she left this world with her heart filled ready to enter the next. That she left behind the traumas she endured and opened her heart fully to the new world she now embraces. I guess there is no way of knowing with my mind, but I am hoping my heart will find a way.

I have received many wonderful emails which I am so very thankful for. Your expressions of love for Anne and generous thoughtfulness towards me have lifted my heart often from very deep despair. Love truly is the only healer. I have always believed it and this experience makes me know it all the more. Please forgive me if I have been unable to respond. It is not for lack of wanting to but only lack of time.

I will try to make an entry later this week prior to the celebration but if not I will make a full reporting of the event afterwards.

Love to All,

Dennis

these days

It seems the numbness from the shock is beginning to wear off as I become ever more aware of the undercurrent of pain that exists deep inside. It is a different kind of pain then before it lives in a place I could only describe as the roots of my heart. They seem to travel to the center of the earth and that is where I feel the pain. There is no remedy for this kind of pain at least at this moment. I get a bit of relief when I can open to Anne's spiritual presence but for the past two days I have been immersed in preparations for Nov. 4 which included pouring through hundreds of Anne's photos for the DVD. I cried as I worked sorting through. Maxine comforted me with an embrace. Perhaps things will lift at and after the celebration, as Anne's life and presence are brought into focus and shared by all of us honoring her rebirth into the spiritual realm. I have no way of knowing but it somehow seems so.

In the meantime the celebration plan is emerging and will contain beautiful musical offerings, a wonderfully decorated setting and the voices of those who hold her love in their hearts. And thanks to the generosity of Angela's boyfriend George, who has donated countless hours of his professional time, there will be a DVD spanning Anne's life in picture and music. George the only word that applies here is you have been a mench in the full sense of that word. Thank you.

I have received some very wonderful emails and I am grateful for the love and support that is helping to sustain me through these days. If there are any "Anne stories" out there for sharing it would great to receive those as well. I would like to gather all the stores I can to create a commemorative collection as mentioned in the previous post.

Annie I love you and I know you both hear and feel me as I do you.


Much love,

Dennis

First Time Back to Anne's House

Probably one of the most difficult moments I have ever faced in my life was retuning to Anne's house on Sunday afternoon. The combination of heartache and emptiness I felt was searing and I don't really know how I managed to get through it. My two youngest Nick and Sofia were there along with Lucy, Owen, Nancy, Russell, Angela, and Leslie. We had just finished a birthday brunch for Lucy's 19th at Russell's and went to Anne's to sort through "stuff ". The mood was not somber and was in fact light. The sun was shining and the kids and the party added a bit of festivity to the day. I know that is what Anne wanted for Lucy and everyone. I felt her spirit there right in the middle of everything but I needed to see her smile, to hear her voice, and feel the touch her hand in mine. It is so hard to grasp this reality. It just doesn't fit into anything I can make sense of. And yet that may be the very thing that will alter my view of life in ways I could never experience otherwise. I just don't know what they are. At least not yet. It may take a very long time but I have learned to be patient, especially for life's important lessons. They're worth it.

I have gained a good deal of strength from the continuous support given through the comments left here, emails, phone calls and cards. It lifts my spirits to hear about how Anne had touched your lives, as she did (and still does) mine. With that in mind, I would like to put together a collection of stories about Anne. So, I am asking whoever would like to contribute a story (not too lengthy) , to either send an email or put as a comment here or mail me letter with some thing you remember about being with Anne. A funny story, how she influenced you, made you mad, how you met, description of how she looked one day. I believe it will be an important part of the healing process and a wonderful gift for Owen, Lucy, Mary-Brent, Harry and me. If you have a photo that is part of the story that would be great. For those of you who are coming to the Anne's life-celebration on 11/4 please bring your story with you. You may want to share it.

The Anne's life-celebration will be held on Sunday, November 4th at 2:00 pm, at Graton Hall on the corner of Graton Rd. and S. Edison. It is easy to find and is near Anne's house.
Get on route 116 West through and past Sebastopol about 5 miles (not sure of the millage) turn left at Graton road (traffic light). Down the hill to the stop sign and the hall is on the right.
It would be helpful to have a count of people who intend to come. Food and drinks will follow at around 3:30.

My email is.... dennisp@sbcglobal.net

Street address:
Dennis Puorro
231 16th Avenue
San Francisco, CA 94118

Love to All,

Dennis

Her Loving Presence Lives On.

I find myself slipping in and out of a dream state. It is as if I am straddling this world and the next. A part of me is with Anne on the other side. Somehow I have taken that journey with her. I suppose I truly have as she is still right here with me. I hear her voice and feel her presence as I go through my day. While the weight of all the lost "might have beens" can be crushing at times I am finding comfort in all that we did have. The opening to her spiritual presence keeps the true essence of the relationship very much alive. Last night I climbed into bed with her bathrobe held close to my chest. The feeling was different then times before when I was filled with sorrow. There was joy. She was right there. I could feel her embrace but it was around my heart not my body. In the morning it was like we woke together to begin our day together. I was filled with ideas for the day and eager to get going. The feeling was similar to the other morning when she came to me in a dream but somehow more tangible as I felt her bodily presence through the bathrobe. At times I realize I am still very much in shock, and most likely will be so for some time to come. But there is some wonderful sweetness as I slowly piece myself and my life back together with the loving, purity of Anne's spirit lifting me gently back into this world.
I don't know what lies ahead as each moment can hold a new realization or a painful reminder of her physical absence. I do know that the deep relentless sorrow has eased and given way to the heart connection that continues to evolve.

I have received an incredible outpouring of support through cards and calls from Anne's extended family, her friends as well as from my own. It is wonderful to hear about your experiences with Anne and stories you remember. It is the memories that we hold in our hearts that keep her right here with us and eases the pain of her absence.

The commemorative celebration of Anne's life will (as far as I know semi-officially) be held at the Graton Hall on Sunday November 4th at 2:00 P.M. Final details will be posted by the end of the week (I think).


Much Love to All,

Dennis

P.S. When I woke I heard Anne tell me to go to the movies tonight instead of the bereavement group. I was torn about not going to the group but felt compelled to go to the movies. I went to see "Michael Clayton". The first trailer they showed before the movie started was about a young couple. He is found to be terminally ill but before he dies he writes letters to her that are delivered to her in sequence over a period of time. Each one contained some experience she is to engage in so that she could always feel his presence and his understanding of who she is. I did not think it was a coincidence. I think Anne intended for me to see the trailer to let me know she is right there.

Owen for dinner/ Anne appears (in my dream)

Last night (Monday) Owen came by for dinner. I cooked while we hung out in the kitchen talking.I recounted to Owen my first cooking experience with Anne and her critical comments and doubts about my unusual combination of flavors. I basically told her to back off and reserve her comments for the finished product and not the process. It turned out great and she was thoroughly impressed but it was probably the only time she conceded to keep her criticisms to herself. Interestingly enough I was broiling salmon last night and as I was preparing to take it out of the broiler I heard Anne's voice say "turn the fish over and broil the other side" I was worried the fish was over cooked so I didn't turn it. We set the table including a place for Anne and began the meal. Sure enough the underside of the fish was uncooked. I told Owen what I heard Anne say and put the fish back into the broiler bottom side up. It was wonderful to spend that time with Owen. I could feel Ann's presence, her love for her son and her love for me for taking care of him. After he left I became busy with cleaning up and some unfinished paper work. Also spoke to Russel and Nancy. But the nights are the toughest and by bed time my heart was aching from missing her so. It only got worse through the night and was as bad a night as I have had except for the the first few days after she passed. It was a fitful sleep, waking a number of times but just before I was going to wake for the morning Anne appeared. We were standing in her kitchen. She was waring her bathrobe, her hair had grown in about an inch. She stood there with sparkling blues looking right into mine, a big smile and arms open wide. I through my arms around her and we just held one another. No words were spoken. No words were needed. My heart was filled. When I woke she was still there with me. My heart was light.
I have no doubt that she came to me to ease my heart and mind and to let me know that her love for me was still there. It was truly amazing grace. Thank you my Annie. It is a thin veil between this world and the the next. Love knows no boundaries.

It is not yet official but the memorial date will be changed from Sat. Nov. 3 to Sun. Nov. 4 .
We are also planning on having a memorial bench with Anne's name placed in Armstrong Woods.


Much love,

Dennis

Scattered Thoughts and Phone Calls

It is now just over a week since Anne left her physical body to fully embrace the spiritual world she felt so connected to. As the shock, although still very present, has begun to subside, I feel Anne with me more and more. She is present with me at work and is guiding my hands as I use spontaneous massage techniques on my patients. I'm not sure if I can call them techniques as they are strokes totally unknown to me yet they are having great effects. I choose to believe it is her spirit coming through and whether it is in fact so or not it brings me comfort. I have been comforted by my phone contacts with Mary Brent, and Harry who are gracious enough to support me as they go through their own grief process. I have received support from Angela, Stephen, Nancy and my own family. I spoke to Owen tonight and we're planning to meet for dinner Monday. I felt that Anne's love for the two of us was right there as we spoke and in that moment the pain was gone and an internal softness was present that has been absent since she became severely ill last month. I am certain that the last thing Anne would want is for those she loves to be suffering. If there was a way to experience loss without pain however, I would not accept it. I believe the pain is very necessary and important to guide us to higher levels of awareness and growth. It really only becomes suffering if it is pain for pain's sake and nothing else. I miss her with all my heart and I will honor her memory by living into my grief and letting it guide me to a greater sensitivity to myself and others.

We are working out the plans for the memorial. The obituary, although written, is still on Nancy's computer awaiting final editing.

Love to All,

Dennis

Words and memorial service date

I may be writing this for my own purposes but perhaps someone is still looking at the blog and is curious as to what's been happening since Anne's passing last Friday. On Friday Angela and Nancy spent the day preparing the house and Anne for the funeral. While the memory of that moment is painful I must say she looked absolutely beautiful. That evening Owen and I built a simple pine casket which was placed in the living room. Saturday morning Lucy and Leslie made some last minute decorating changes to massage room table where Anne was laid out to suit Anne's taste.People began to arrive around noon and were invited to decorate the casket with the various art materials on hand. There were many talented artists in the group among those who rendered wonderfully touching images and designs. As the day and evening wore on the box was transformed into a work of art. It's hard to say exactly how many people came that day but it seemed like the house was filled the entire time. A few people came on Sunday including my three children. Later that day Owen played violin for Anne. It was very moving. Steve had been playing guitar on and off that day which created a wonderfully soothing atmosphere. I can't bare to, nor do I think it's fitting to go into any of the details about Monday morning at the mortuary but it was at this point that the pain I was holding back came rushing to the surface. In the midst of my inconsolable state I suddenly felt Anne's spirit lift towards the heavens. I felt her and could see her spirit as if my heart had eyes. My chest immediately ceased its heaving and my breathing slowly returned to normal. I knew she was free. I was being held by Nancy and Angela who have been incredibly supportive to Anne and me throughout.

For me the world is no longer the same place. I don't know what that is about except that I have had the great gift of loving so deeply and completely it feels impossible to bear its loss. Slowly I will come to realize as the shock and the pain subside that the love remains and life goes on perhaps in some ways richer for the love thats been.

Thank you my beloved Annie. For our time together can not be measured by a calendar or clock but only by the bond we created which has felt like a life time. I love you and always will.

It may not be necessary give thanks to all of you who have been so supportive with prayers, words, thoughts, time and gifts of food, but I know that Anne has always been so grateful as have I. Thank you so much. It is wonderful to be a part of this loving community of family and friends

We are tentatively planning a memorial service on Saturday November 3rd. The location to be determined.


Much love to all,

Dennis

visiting with Anne 9/22 12-6 pm Directions below:

Anne is here at the home for paying of respects, blessings, prayers.
Take 116 to Graton Road, turn toward Graton. At center of Graton, turn left at stop sign on
S. Edison Street. Go through first stop on Donald, Anne's house is second driveway on left, 316 S. Edison. 707-829-0875

On The Wings of Angels

Our Annie is in exquisite beauty and peace. She was ushered upward on the wings of angels earlier this morning as we surrounded her and witnessed her blessed passing. As my heart became numb from the overwhelming rush of pain it was comforted by the amazing aura of peace emanating from Anne. I still am waiting to hear her call my name to help her out of bed. The reality escapes me but not the constant love that will always be. Last evening, as Anne lay still, her breaths quiet and slow, Nancy, Angela, Leslie, and Maureen tended her while Russell and I exchanged life stories in the living room. Lucy was with her friend Tina. Owen was being comforted by his girlfriend Laura. The house was serene with an air of sweet sadness. I believe that the quality of those last hours were manifested by Anne's internal peace and her desire to let us know she is and will be fine. It was evident by how she looked as she passed from this world into the next. Annie my beloved, your timing and intent were filled with the grace and beauty that you embodied. Thank you for honoring us the privilege of being with you .You live always in our hearts.

At this time we are preparing the house for an in home funeral. We would like to invite anyone who wishes to be with Anne to visit tomorrow (Saturday) between 12 p.m.and 6p.m.

Please surround Harry and Mary Brent with your love and thoughts of comfort. I can not imagine the grief that losing a child brings.

Love,

Dennis

Your prayers received

Anne was sitting up in bed while those who came to the prayer group here sat in a circle on the back lawn and each of you were praying from a far. Your prayers were felt by Anne. She turned to me and looked into my eyes with great intensity and said "I think I am going to live". It was said with an up lifted spirit that I had not seen from her in a long time. I am certain it was her being held by all of you at that moment that freed her from her fears and struggle. It was wonderful to see her let go. She seemed more at peace and has been so since. She does not seem to be experiencing much pain and is only getting low doses of medication. She manages to get up out of bed with help and walk to the bath room and sometimes living room to sit on the couch. She is sleeping most of the time and talking incessantly in her slumber as only Anne could. I can't tell you how or why it is happening but she appears more beautiful to me each day. Perhaps it is the beauty that happens as we surrender to innocence. That same innocence and purity of a new born. She is returning and we are there to witness her passage home. I can't begin to tell you the pain that fills my body at this moment but if it is framed with the purpose of helping her in her return home, it becomes somehow, sweet pain. Surround her with your love, lift her spirit with you prayers and escort her to the threshold from where ever you are.

Love,

Dennis

Prayer Circle Monday 9/17 7pm

Anne is at home, resting mostly, with a view of her beautiful garden and with friends helping her with her needs. She is not, thank God, in the intense pain she was in earlier and her lucidity comes and goes.

We are asking for all to join in a prayer circle, where ever you are tomorrow, Monday, between 7 and 9 pm. Please hold Anne in your hearts, prayers and meditations with the intention to assist her in her transition.

She is not asking for visitors at this time. Please respect her need for quiet and contemplation.

Thank you for all your support and compassion,

russell

Holding her in our hearts

I truly don't know where to begin or how I will be able to write this. We have to prepare Anne and ourselves for her final hours. She has no hope of recovering from this illness and is already in a very weakened state. She has fought so valiantly and rallied time and again but there are too many fronts for her to fight. She can no longer hold on. The doctors have given her a choice to continue to fight what will ultimately be a losing battle or return home with hospice care and family for at most two weeks. On Saturday we will be returning to Graton to spend time looking at the garden and finding comfort in knowing that time is but eternity turned inside out and that we will have forever together on the other side. We all have shared and continue to share many beautiful moments with Anne. I consider this one one of the most beautiful of all. We can not experience deep joy if we do not experience deep pain as well. I revel in the joy and the pain I have shared with her and at this moment it is exquisitely so. You have filled my life with great joy my Annie. I am forever grateful.

Please take comfort in knowing that Anne is in much less pain then she has been in this past week. Surround her with whatever thoughts and prayers you believe will help her crossover.
Hold her in your heart.

Much love to all,

Dennis

A Ray of Light in a Dark Hour

The last five days have been harrowing to say the least. Anne has been tossed around like a leaf in a gale by what we thought was graft versus host disease. While the GVHD was started intentionally in an effort to combat the leukemia it put her in a downward spiral which seemed would only be stopped by a miracle.It may not qualify as a real miracle but tonight's news sure feels like one to me. Last Friday Anne was given a colon-oscopy with tissue samples taken to determine the source of her condition. It takes several days for the results of the specimens to come back from the lab.In the mean time Anne's condition worsened. The clinical picture seemed to point to GVHD so the doctors decided to treat her based on that picture. She did not respond and things were looking bleak. The preliminary results of the biopsy came back this afternoon which indicate a viral infection and not GHVD or at least not severe GHVD as they feared. The virus is most likely CMV which Anne has had before and cleared with an antiviral drug. She was placed on a stepped up dose of the antiviral drug and put on a reduced dose of the steroids they were using to stop the GVHD. The final report will come back Tuesday or Wednesday by then Anne should be feeling a good deal better.
I am not sure if I can accurately describe all that I have experienced going through this along side of Anne. What I know at this moment is a tremendous weight has been lifted from body. My heart feels light again. We are not out of the woods but at least we are back on the path towards home. I pray that she has experienced the worst of her suffering,it is over never to return again.
At the moment she is resting peacefully.With all that she has been through and endured she some how manages to frame the experience as part of her path to enligthenment. Amazing
Tonight I think I will sleep well.

Thank you all for the constant support and ongoing prayers

Love,

Dennis

Requuest for Big Prayer

I am feeling really bad. My colonoscopy/endoscopy look like it is GVH. Safest would be to wait for the biopsies to come back in a few days. But Tx - prednisone may bee needed sooner. And possibly aspirating some more fluid off my abdomen.

I am somewhat demented from the dilaudid - nightmarish. Sleep is the only relief, but that is limited to a few hours here and there.

Love,
Anne


Anne is truely struggling, completely worn out. The pain, unbearable at times, comes in waves. She now has a pump which provides an instant dose of dilaudid - and sometimes that's not enough. Her distended belly cries for relief .

The attending physician was just in and it's looking more and more like GVH. The G.I. physician will be consulted and a course of treatment will begin. Unfortunately, the biopsy results won't be back until Monday or Tuesday, at the earliest.

Love,
Nancy


PPS: from Anne - a little nap has made me feel a little better, both mentally and physically.

Thank you, my dears

It is Wed. morning. Hey, I finally have a good room - it is a double, so I could lose it. I think I might be feeling a little better today. Still no diagnosis. My oncologist is not on the floor, so he wants the guy who is - who is not an oncologist, but an internist, to figure it out- and. surgeons pop in an out, and I do not really feel held. "Not conclusive for gall bladder disease", and they talked about doing a test to see if my gall bladder is blocked, but have yet to schedule it. My oncologist doesn't really see surgery as an option, and says the gall bladder will always eventuall calm down.

I have gained 15 lbs of water weight, yet my urine is very dark and I fell very thirsty. It is all in my abdomen, which impedes my ability to breathe, so I am on oxygen. I have the runs, of pure bile. My blood counts have all gone down.

Meanwhile, my doc is finally (said he'd start last week) researching clininical trials.

Well, it is hard for me to be feeling optomistic at this point, but that is probably mostly because I feel so bad. So please intensify your prayers, for both the immediate problem and the long term.

Love,
Anne

they say

They say God only gives you what you can handle. I guess God thinks that Anne can handle a lot.
On top of her going out of remission she is now back in the hospital with an inflamed /infected gall bladder and faces possible surgery if antibiotics don't resolve it. Her symptoms have steadily worsened over the past 5 or 6 days from fever to nausea to severe abdominal pain. I will forgo the details at this time but say that in her typical iron willed style she has faced it and continues to so with great focus, determination and purpose. She has gotten some relief from Dilaudid a powerful pain medication. We'll know more in the next few days and hopefully the pain will subside as the gall bladder calms down. This of course is the very highly edited and shortened version of this past week's events and details but it's all I have time or energy for right now.

Love to all,

Dennis

Well, this last visit to the clinic they saw blasts in my blood, which makes it official that I am not in remission. I am off the immune suppressant and rooting for the GVH. There is a one in three chance that the donor cells, or the GVH, can get the leukemic cells. The only thing more UCSF could offer me would be another dose of the Mylotarg. It would be a bigger dose, and it worries me because my liver enzymes keep rising (possibly GVH), and Mylotarg is very hard on the liver. Stephen (my brother) is researching clinical trials for me - they would all be elsewhere. Oh, this journey is long and hard.

And I have a fever - high enough the protocol is to put me in the hospital, but fortunately, my doctor shared my opinion that we could wait. I only have mild upper respiratory symptoms, and strange crampy muscle pains. I suppose it could be GVH, but it does not usually give such high temperatures.

My equanimity seems only to grow, as the illusion that I am in control falls away. Not that there isn't necessary action and the need for clear intention on my part. But that is not control. And also, I think to be in as much relaxation and joy as possible is what my immune system needs.

Your continued prayers and messages are deeply appreciated.

Love,
Anne

Life in the Unknown Zone

Yesterday was a series of disappointments. I went to the city the night before to be at the hospital at 8AM to have my central line removed. They had me on the table, when my nurse practitioner called and said not to pull it. I felt no matter why, I wished she had called ten minutes later and it had been too late. I also was pretty sure that it could only be the results of my bone marrow biopsy that could have lead to the call. And that it would be hours until I saw her and heard why. I managed to grab her in the hall about two hours later and get the short version. Here is the full version. I have the normal number of blasts (immature white cells), which means I do not have leukemia. However, some of these blasts show an aberration that my leukemic blasts showed, which implies that I could have residual or early leukemia. My doctor says it is simply too early to say. I will be weaned off the immune suppressant by the end of next week, in hopes of giving me more GVHD. They will do another bone marrow in a month. They may give me more of the donor stem cells, to provoke more GVHD, and also tip me more to being 100% donor blood and immune system.

Also my blood counts were the lowest yet, from the nasty anti-viral. I have stopped it, and my counts should recover in about a week. Meanwhile, I am still going to the clinic twice a week.

I feel OK, though tired, and a little low grade sinus/throat stuff. Hard to return to being more careful again, but I must.

So, my dear friends and family, please keep those prayers coming my way. Although I am somewhat bummed and fearful of GVHD's wild unknowns, I am relatively serene and happy.

Blessings,
Anne

Hello Again

It is Wednesday, and I am just back from the city, there since Monday afternoon. Dennis went to my appts. with me yesterday, which was a treat. Alas, I did not have my line pulled - it is scheduled for next Tuesday. My doctor wanted to wait for the the results of my bone marrow biopsy, although the preliminary review was all clear. My magnesium levels have held, and the weaning off the tacrolimus has begun. I continue to have weird skin stuff (prickly, highly reactive, still sun sensitive), which I am not too thrilled about the possibility of having worsen, but the drug cocktail alternative is pretty bad too. Forward I go!

Russell, Lucy and Suzie, chauffered back from the airport by Owen, had dinner with Dennis and me Monday evening, which was lovely. Owen had his wisdom teeth out this morning, impacted and one infected, and he is having a good bit of pain already. Lucy had her first filling today, which she almost made into as big a deal. So I played Mommy nurse this afternoon. So nice to get to do that again.

My response to the frequent question "how are you" is usually "decent" these days. I can't yet say I feel good, but I have some energy, and feel more or less like myself again.

So that's the update! Hard to believe the summer is almost gone. I think for me fall will be like spring.

Love to you all,
Anne

Steady Progress

My bloodwork has continued to improve in all areas, and my CMV is at last negative, and I am down to half the dose of the intense anti-viral. We are seeing if I can get all my magnesium orally, and if I can, my line will be pulled soon - which is good, because it is falling out. I will be ecstatic to get my body back - it has been a source of constant unease.

And my energy continues to improve, and of course, for me that means taking care to pace myself. I'm not doing much really, just a little more exercise and some of my own housework and errands. Dennis and I have had some nice meals out, and our first movie in months.

So things look good, though I have learned to be guarded in my optimism.

Lucy is having fun in France, comes back Monday. I have missed her. But I have been seeing more of Owen, who is always a joy to be with.

I miss hearing from many of you, so when you feel like it, send me an email and let me know how you are doing. annebocc@sonic.net or annebocchino@gmail.com.

Love,
Anne

Improving

Hello there,

I just got back from the clinic, and the news was good. My counts are holding or rising in spite of the new anti-viral which lowers counts. My liver enzymes, which hit a high at the hospital, are starting to come down. Best, my NP thinks I am a good candidate to start to wean off the tacrolimus (immune suppressant) at 60 days, which is just 2 1/2 weeks off (it is the doctor's decision). Also I get to go down to one visit/week then, providing I stay stable during this time. I went off one antibiotic and my fever came back this week, so I am back on it now. So it still seems like a dicey time period, but with good luck, not for too much longer.

My energy is recovering slowly but steadily since this last hospitalization, but still not as good as even a few days out the last time. We have had foggy mornings, which have made me feel more at ease on my walk. And temperate afternoons.

Dennis comes up tomorrow afternoon for almost five days - a rare luxury for us. It will be a wonderful and needed break and rest for him. And Nancy will take off and go camping, which is her idea of a good time.

Thank you once again for your prayers and support.

Love,
Anne

No real news. My low grade fever is hanging in there at this point, but I am feeeling a little more energy each day. We are in a hot spell, though not horribly so, and I am trying to get up earlier to get my walk in, and walk again in the evening. I am adjusting to a life of high uncertainty and limitation. What a change of a way of being for me.

I hope you are all well.

Love,
Anne

Home Again

And I am so fortunate, a very temperate breeze is blowing through the house. It really feels divine to my still somewhat feverish body. My temperature is a little lower today, so hopefully my doc was on target with his guess that the fever has been from the CMV, and would take a few days on the medication to respond. My platelets are coming up again, and my bone marrow biopsy looked good.

All's well that ends well. And all is ultimately OK.

Love,
Anne

I am probably going home today, in spite of the fact that my temperature has risen somewhat again off the IV antibiotics. I still think I have a sinus infection, and we haven't found the right antibiotics. At least my guts are starting to feel better on the flagyl. They also found a low titer of CMV - cytomegleovirus, so I am on a new drug for that. I knew I was CMV positive, as is 90% of the Bay Area, and it would probably raise its head at some point of immunosuppression. So I go home on 3 antibiotics, 2 anti-virals, 1 antifungal, my immune suppressant, and a drug for the heart burn that one of these causes. And a fever still. I am not sure I got anything out of this week in the hospital, except it was easier to do tests here. Well, maybe home and rest will bring the cure.

Anne

Slow Improvement

My fever is a little lower today (only 100.5 so far). They have found an intestinal bacteria, one that usually gives diarrhea, but for some reason I have become very constipated, as revealed by the all knowing CT scan. They are hoping to send me home on Thursday. I have to be on flagyl for a week, which makes me nauseous, but perhaps will finally get me out of this particular woods. Between the immune suppression and graft vs. host, it is a hairy line. Add in drugs with serious side effects (and on to the drugs to deal with the side effects) - I will be so glad when this time period has passed. My platelets are on the rise again, so it looks like engraftment is going well. My white counts hit some good highs fighting infection, that I do not think my body was able to do for a long time. So this looks like the strong immune system I have needed. They will do a bone marrow extraction tomorrow, I think unnecessarily, but the reassurance will be nice.

Stay tuned in for the thrilling blow by blow accounts. I hope you are having wonderful summers. My brother Stephen is getting over shingles on his face, so I hope he feels better soon.

Anne

Long bump?

Well, it is Monday afternoon, and my only improvement is that my fever is not going quite as high. It doesn't really appear that the antibiotics are working, and the docs don't know where the infection is coming from. I still hold out the theory that it is at least possibly my age old dental cavitations (places that did not fill in with tissue or bone after dental extractions, that can harbor infections). The docs hold that as a possibility but did not take my suggestion to try more anaerobic antibiotics. And it could be GVH, although I have elevated white counts, and a higher fever than would be normal for that. My red counts and platelets are down, which could be from either cause, or even just from an uneven engraftment process.

Perhaps I am just meant to contemplate the deepest meanings of existence in a small room with white walls, and an intermittent view of San Francisco when the fog lifts. I certainly seem to be getting continuing lessons in the art of surrender. I am ready for the lessons to get easier.

Someday this will all be over, and this blog will be no more, but until then,

Your faithful blogger,
Anne

Bump in the road

This is Dennis on Anne's computer. She is back in the hospital (UCSF) as of last night, 7/13, after hitting a temp of 101.5. She had been running an on and off temp about for about a week. 101.5 is an automatic admit and off Nancy and she went to the ER. I met them there around 7:30 last night and after a bit of the usual hospital paper work screw ups she was taken to her room (1473 L).
She was tired. She left the hospital earlier that day after waiting 4 hours for her clinic appointment only drive home in Friday rush hour another 2 hours. Needless to say she was fed up with the whole medical system. Today was a bit better but not that much. She was CT scanned, MRIed, nose scoped, and given the wrong diet. No real source of the fever was apparent. She hit 102.8 on Tylenol at about 4:00. Some time after that the fever started to reduce and she managed to produce some green colored, I guess the only way to put it, snot. We were very relieved as it was a clear clue as to the source of the fever. She's on IV antibotics and hopefully the right ones will clear up the infection quickly, then home and back to life. Before I left, her appetite was back and we had a good dinner of soup and salad her temp was around 100.0 and spirits were much better. I'll keep you posted.

Much love to all,

Dennis

Well, I have a mild case of Graft vs. Host, which is being monitored very closely. I definitely have a rash, which is spreading. I might have digestive issues as well, though it is hard to know what the cause of that is. I don't know at what point they would put me on prednisone, but I suspect I am close to it from the degree of scrutiny on the docs' part. I also got a sinus infection again, so I feel somewhat lousy, though not incapacitated. I am trying to get NO sun. I still take my morning walk, which is mostly in the shade, with heavy duty sunscreen on and maximum clothing/hat coverage. I am suddenly close to being a shut-in - unless I learn to be nocturnal, but I am totally pooped by evening.

Some Graft vs. Host is good - it is also Graft vs. Leukemia, and this amount is very livable. The concerns are of it getting worse. And my concern is never getting to go in the sun again. Only time will answer these questions.

Nancy just came in from weeding. It's so hard for me to let people work for me! The yard looks great, and it is very lovely for me to look out on. We have returned to foggy mornings, which make for temperate afternoons. Life is good in Sonoma County.

Love,
Anne

Fourth of July

I'm sitting here hooked up to my IV pole, and at last have a high speed internet connection (I live in the boonies) which makes for happier time at the computer. I took a four mile bike ride this morning, and can walk about two miles - I feel like crowing at people I pass "I just got out of the hospital a few days ago!" I have had a mass of small complaints - almost all drug side effects, which I will spare you the details of, but at least some of them are resolving. I have a flush on my upper body which could be the beginning of GVHD, but I did have some of it before the transplant too, so only time will tell. I go in and out of worries, but no major bouts of fear.

The wonders of being home are slightly tempered by my sun restrictions, and the fact that we are in a heat wave now, so even in the home can get oppressive. But it gives us glorious early mornings and evenings, which are the only times I can really go out anyway.

My bloodwork on Monday was great - I am well on the way to normal counts.

I spent last evening with Dennis, and we watched the Sebastopol fireworks from his car, and took an evening walk. I think today I will have dinner with my kids, and who knows who else. We'll do it at Russell's, as his house doesn't get as hot. I hope you all are having fun today.

Anne

Home Today

By this afternoon I will be back in Sonoma County warmth and sunshine. Though it has been almost as good as it gets for a stem cell transplant, it has still been really hard. It will be wonderful to unwind it all, and continue on with this marathon healing journey from a much greater place of comfort.

I will continue to post, though not as often. Thank you all so much for your faith and constancy and support and prayers. Let's keep envisioning my very healthy body and full life ahead.

Love,
Anne

The end is in sight

My hematocrit was up today, so it looks like all systems are go for going home on Friday. I will need a daily IV nurse for magnesium (a side effect of the immune suppressant), but I will be able to learn how to do it myself. The mucositis is slowly subsiding, and I think I will not need painkillers tody.

So many hurdles passed, and a ways to go. The love and support has surely been one of the keys to how well this has gone so far. It is really all quite amazing - my sense of the little "I" is much diminished in the largeness of it all. The most difficult thing has been my mind, my fear and my resistance. It has been great to get to see that so clearly. I think grace is always there for us to step into. Your cards and e-mails have been great reminders for me.

Off for one of my last boring walks in the uninspiring halls. Always grateful that I can walk, when many on this floor cannot.

Love,
Anne

Numbers Up

My white blood counts shot up to normal today. My hematocrit rose, though it's below normal. My platelets are still needing daily replacement. They will be what could delay my ability to go home, but hopefully will come around some. So I think now Friday is probably the earliest I can leave. I still feel crummy from the mucositis, and maybe directly from the last methotrexate, but I have reduced my pain meds.

I am starting to get that institutionalized feeling, can't quite remember what it was like to be out in the world. Definitely time to go. Oh, for an uninterrupted night's sleep...

My IV alarm is beeping - happens about 15 times a day - must go.

Love,
Anne

Day 11 Update

Well, my stem cell coordinator had told me at times it would be one step forward, two steps back. The day after my big jump in white blood cells, they hit a new low. Today they were up slightly from that, so I think there is engraftment. My mucositis hit, and at this point am on round the clock pain meds and can only swallow soft foods. Also I itch all over my body, and at last my hair is falling out. As I get my last dose of the immuno suppressant that is giving me the mucositis today, this will not turn around for a while, probably get worse, and the hardest thing for me is just being here longer.

Well, thank God for the painkillers. They want to give me one of those self dosing pumps. Lucy has made me a lovely custard that is the only food I can both swallow and enjoy.

So all this is just temporary stuff, and the big prayer remains no GVHD, no leukemia.

Love,
Anne

Must be the time of year,

all the light and resulting new growth: my white count went up today, showing engraftment of the new cells in record time. Once again, the power of our prayers seems evidenced. Alleleuia!

I have also hit the nadir, feeling cruddy and having a certain amount of mouth pain. I have had strong pains and strong energy feelings, in my legs mostly, and had attributed it to riding the exercise bike with a very low hematocrit. But it is "bone pain", from the marrow developing very rapidly. It is much like labor pain, building up to an almost panting intensity, then passing.

It will take a while for my blood to develop and stabilize enough for me to leave, and as it does, to see if GVDH asserts itself. But if all goes well, I should be out by the middle of next week.

Once again, thank you all for your prayers and well-wishes.

Love,
Anne

More No News

It is Monday morning, and sunny here in SF. It really makes a difference to my mood. My blood is low, but not yet at its nadir. If things go well, my new cells will engraft, and by the weekend my counts will start to come up, and hopefully I can go home on Tuesday. Once home, I go to the clinic twice a week (an all day affair) for three months. I keep this central line in for the three months, which looks like spaghetti coming out of my chest. I am still at risk for infection, and Graft vs. Host Disease(GVDH).

My spirits remain good most of the time. The days are long, but finally one turns into the next. I walk the halls with a mask on, and occasionally have a good talk with a fellow patient. Nancy says the garden is looking spectacular, and I am eager to see it.

With gratitude,
Anne

HANGING IN THERE

No news is good news at this point. I feel a little crummier but nothing major. My blood counts are lower, but not yet at their nadir. With luck (prayer?)that low period will be very short and the stem cells will engraft and voila I will be out of here. So be it! Meanwhile I am having very good realizations about my mind and walking in and out various states (fear, aversion,victim feelings, etc.). A woman down the hall is dying of Graft vs. Host Disease, and that has been something for me to enlarge my heart around. I believe I have. Lots of suffering here, and lots of amazing transformation.

Love,
Anne

looking through the eyes of love

I can't say that I have ever seen Anne look more beautiful then she has these past few days. It is that kind of radiant beauty that emerges when you are faced with an overwhelming obstacle and discover inner strength and courage you had no idea was there. It has been an amazing experience to be there as she textures every subtle change in her body or responds to the, all to often irritating, organized chaos of the hospital environment. Through it all she has remained focused, positive and surprisingly joyous. In fact just before they were about to infuse the stem cells the nurse told Anne to report any chest pain or shortness of breath should it occur. Anne then confessed that she was thinking about faking a heart attack just for fun. We all laughed and the nurse said "Don't you dare". Each day has been an incredible learning experience in patience and gratitude. I have had the privilege of being with Anne at some of her most vulnerable moments. Sometimes it was soft and beckoning and sometimes it was hard and repelling but it always held that inner core of beauty that makes her who she is. I consider myself very fortunate to be able to be part of Anne's healing journey and to be able to participate with all of you who have given the kind of support, thoughts and prayers that make miracles possible. Thank You

much love to all

Dennis

Still Alive and Well

After a day of waiting, I finally got my cells around 5PM. Nancy and Dennis had given me a long foot massage while I listened to my "stem cell transplant" visualization CD before. We then played a great chanting CD. My nurse took my vitals constantly during it, so it cramped the spiritual style a bit. When I tuned in, the new cells felt very positive to me, an infusion of life. I think I had been more anxious than I knew, for afterwards I fell into a cranky overtired overhungry state. Once over that, Dennis and I watched a great sunset from the solarium. (We can see west to the ocean, north to the Marin Headlands and the Golden Gate Bridge and east to downtown San Francisco from the solarium - we are on the top of a hill here.)
For all that I have been saying I could sail through this, lots of fears lurked in my mind. Now I can think that it really is possible for me to get through this quickly and easily. I could be out of here in 10 days.
Please keep up your prayers.

Love and blessings,
Anne

Day Zero

Today's the day of the transplant, referred to here as Day 0, or my birthday. I am less anxious than I have been - the anticipation always is the hardest thing. I feel somewhat crummy - worsened sinuses and some nausea. The hospital has been outrageously noisy - construction and floor stripping and waxing. What an endurance test. I found out 2 1/2 weeks post transplant is the fastest I can get out, so I am hoping for that.
I will get an immune suppressant drug on days 1,3,6,11 that usually gives mouth sores, and the other immune suppressant I will be on for the next 6 months. From today on I am very vulnerable to infection, but I will be less so once the cells engraft and my white count comes back up.
Your prayers and well-wishes continue to buoy me up. I am seeing you all in my heart, looking forward to the day I can see you in person. A few good parties and trips could lie in my future.

Love,
Anne

Waiting

It is Saturday morning, and I am more than halfway through the chemo. I still feel pretty good, though I can note some fatigue and spaciness. I may have the beginnings of mucositis, or a sinus infection, since they took me off the antibiotics I have been on for months when I came in. Hard to surrender to the doctors' control at this vulnerable time. I have fear cropping up, as I feel I am at the edge of cliff I am about to be pushed off. I try to just stay in the present. What a challenge! To allow this descent -and the possibility of "smooth sailing". It does seem that only divine protection will get me through this period of zero immunity.

The stem cell transplant will be Wednesday. They call that day 0, so the days leading up to it are minus numbers, a countdown.

They have wireless in the hospital now, so I can read your comments or emails.(annebocc@sonic.net). I did get a quiet room, but from my bed can only see another wing of the hospital. I can see a bit of the city from the window. I can visit the solarium which has a glorious view.

Love and thanks,
Anne

Lucy's Graduation

A wonderful night of celebration which was timed well so Anne could be there.

The time has come

It's all a go. My donor has cleared, and I will go in on Wednesday. I am getting my central line put in on Monday, so I think the chemo will probably start on Wednesday. I am calmer, resolved to put myself in "the key of healing". I am having a small healing circle here today.

I do believe it is your prayers/thoughts that will bring me through. Please hold the image of me in perfect health and returned to vitality. Some specific issues: a quiet room, preferably with a Golden Gate view; healthy liver and kidneys as they work hard to clear the chemo; healthy mucosal tissue post chemo; protected from infections - for the next six months of immuno suppression; the clean end to my marrow and immune system and the rapid and successful acceptance of the stem cells into my marrow; the new immune system quickly accepting me as host and not fighting me more than a little; my new immune system successfully doing in any remaining leukemia cells (also the chemo destroying remaining leukemia). I would like to be back home in three weeks or so, enjoying my garden again. I am releasing all ideas of my suffering and letting myself be a living miracle - why not?

Thank you, thank you, and may all beings be freed from suffering, and may you my family and friends be blessed with good health and good thoughts and joy.

Love,
Anne

Almost Ready ...

to give up all illusions of control or knowing. The female donor "declined", no more info. Suddenly the 25 year old man looks so promising they tell me they might get me in the hospital in a week for the transplant. I hope they give me a day's notice or two. I must go get all my tests done again, including bone marrow extraction, the day of Lucy's graduati0n. My stem cell coordinator is in the Amazon, so communication is even sketchier than usual.

Here is what the process will be: seven days of intense chemo to kill my bone marrow, and hopefully any cancer. A day of rest to clear it out of my blood. The donor's stem cells are transported to me by courier, and dripped in via the IV. They figure out to go to my bone marrow and bring it back to life. In the period until they engraft, I am most at risk for infection. But I will be immuno suppressed for at least six months, with the immune system of about an AIDS patient, pre-cocktail. The other major risk besides infection is Graft vs. Host Disease (GVHD) in which the stem cells recognize me as a foreign body and attack me - hence the immune suppression. 70% get at least a light case - skin and intestinal disturbances. GVHD can help fight any residual leukemia, so a little is OK. About 15% get severe cases, perhaps chronic, and let's all just pray I don't go there.

I will most likely be in the hospital 4-6 weeks. Then I will have a very active outpatient status for some period of time. I will probably be intensely fatigued and rather brain dead.

Every minute some part of my being is at work learning to surrender. There isn't much else to do at this point. I am enjoying time with family and friends, still eating up a storm, and I hiked two hours in the virgin redwoods the other day. I really feel quite well.

Keep you all posted.

Anne

Still Waiting

I am sorry I have gone so long without a post, but there has been little news. I should find out this week that the stem cell transplant is a go, and when I will enter the hospital. Most likely the first week of June. Somewhere along the way they shifted to donor #2, who is a 25 year old woman, no children. This is as good as it gets in the unrelated donor realm.

My parents and my brother Steve and his wife Pat were out to visit me this week. It was a fun and whirlwind four days of socializing and eating. Steve and Pat and six friends and family went to UCSF for a two hour meeting with the doc and the stem cell coordinator describing the process, as well as legally having to tell me odds and side effects in order to get me to sign consent forms. To balance all that, I have been in touch with three women who all had very successful transplants.

I am still having to get my blood tested twice a week and get platelet transfusions. It is anxiety provoking as well as frustrating due to medical bureaucratic snafus. My white blood count is somewhat low, but I remain healthy. I fatigue easily however. Emotionally, it is the expected roller coaster, although on the whole I remain positive.

I will post as soon as I know more.

Anne

The garden looks lovely. Dennis did much of the work, including putting in a sprinkler system.

Donor Found!

Well, you all must be some high level pray-ers. The first person that was tested came back a 10 out of 10 match. She is a 37 year old woman. I don't know if she has had children, which is less than ideal. They are also waiting for test results from a 26 year old woman. The next step, with at least the one potential donor, is to see if she is available soon enough. We are asking for the first week in June. I will have two more bone marrow extractions before then to make sure I am still in remission. Much more for all of us to continue to pray for, and I remain very blessed and grateful to have the support from all of you.

I am feeling a little better than at first on the mylotarg. With the help of Lucy's boyfriend David, and Dennis, I have planted a garden in the back. I won't be allowed in it after the transplant, but will receive much pleasure and sustenance from looking at it.

I have lots of appointments keeping me busy, and am trying to use the rest of my time to process and center and prepare (a big job), and to be with loved ones. There really isn't anything else that seems important. I wish I could say I am living every moment in the joy of the present, but I am not there yet. It is a lovely goal to aspire to however.

And may you all be blessed with such enjoyment.

Anne

Thank you Ruthann, Sharesa, and Ellie for your comments and support on the last post. My email, if anyone wants to write directly, is annebocc@sonic.net. Then I could answer personally.

Since it costs about $2000 to test as a donor, insurance only covers immediate siblings, who are the only real statistical likelihood. I do encourage people whose interest has been sparked to get on the registry - I will find out what that entails. The first test is just a blood test, and to be a donor for stem cell is mostly a couple hours of pharesis, where they take the stem cells from your blood and return your blood to you. The young make better donors.

I had the mylotarg last Thursday, and did have a reaction this time (chills, nausea, fever). I have really noticed my liver since, and have been a little queasy. I go back to the clinic tomorrow morning. I will see a local oncologist next week and hope to be able to have bloodwork and transfusions done up here.

My mental/emotional process is complicated, and somewhat subterranean. Last week I was processing mortality a lot, but I seem to have mostly moved on from that one. I am looking into a few practioners as alternative/integrative support, although around here that is a Pandora's box. I am also making more time to rest, meditate and listen to my guided visualization CD's.

My mother has sent me water from Lourdes.

Thank you all for your prayers. Please hold the vision of me in perfect health.

Anne

Biopsy results

I had my bone biopsy done Thursday, and had a Dr. appt. Friday with the doctor I wanted to see. The bone biopsy showed 6% leukemia - not the all clear I wanted, but still in remission. I am going to Sea Ranch in a few hours with Dennis, and will go back to the city with him Wed, and spend Thursday in the clinic receiving my dose of Mylotarg. It will be double the dose I received last time. It runs the risk of liver toxicity, but I did very well last time. I will have to get my blood checked 2-3 times/week and probably need at least platelet transfusions. And I will be neutropenic again. My conversation with the doctor convinced me of the necessity of the stem cell transplant, which my mind was still trying to wiggle out of due to the huge risks.

Meanwhile, I met with the transplant coordinator, and found out my 11 preliminary donors is a very small potential number. I feel like I am at a gambling table and the stakes just got way higher and the odds much worse. If there is not a live donor, they will search the baby umbilical cord bank, where the match does not need to be so precise.

So your prayers seem more important than ever. I go through many feelings, but I think developing is a sense of surrender to that which is out of my hands, whatever is meant to be. Living fully in the moment becomes more of a necessity.

I hope you are all well, and that spring comes very very soon to the Northeast.

Anne

Hello, my public

Oh ye faithful, that are still checking this, thank you. I went to UCSF yesterday - descent back into the disease model - though in fact it was another gorgeous spring day and in part a fun lark to the city. Lots of waiting and frustration - the clinic is clearly on overwhelm. My blood work was good - all counts in normal ranges except a little anemic still, and no cancer cells seen. I will have another bone marrow extraction next Thursday. Even if it shows complete remission, my doctor wants me to do the targeted chemo - myolarg - again the next week, and left the room before I could ask important questions like whether it will put me into needing daily blood work and every other day transfusions, which is of course a big deal. I am trying to change my follow-up appt. to the doctor I like better the next day, and will hear his answers to these questions. The computer search for a donor has found 11 possible matches, and insurance needed another screening test before they could proceed to contact them. It seems to me they move far too slowly in this process. I am trying to stay in the center of this process as a decision maker, though it is unlikely I will deviate from the doctor's recommendations.

Dennis and I are going to spend three days at Sea Ranch, up the coast, the next week, for our one year anniversary, so the chemo would wait until the next week. Life continues to need to be very go with the flow for me, and I am learning to do that at last.

I worked three hours at my bookkeeeping job yesterday, which I enjoyed, and will do again next week. My brain actually worked, which was gratifying.

I exercise a little more each day, building my stamina and my leg muscles up again slowly. I gained seven lbs in a week, putting me at 135, which is a very low end of normal for me. I eat voraciously and frequently, but I think I am slowing down a bit. I feel pretty good. It is all relative, and simply being alive, and not in the hospital, makes me quite happy.

Happy spring to you all - even my Northeastern cousins should at last be there. Such a lovely time of rebirth.

Love,
Anne

Home again!

I was sprung yesterday! And spring had sprung as well in my month in. I had to change rooms to a double for the last day, followed by an almost sleepless night - the last endurance test of this hospital stay. Home is less of a shock this time, and I am stronger, appendectomy and all. I really hope to be feeling good in about a week. I still wasn't making platelets when I left, but get to just go to my local hospital to be tested and transfused if necessary. Next Monday I will go to UCSF clinic, starting, unfortunately regular treks down there. As soon as my blood counts are normal they will do another bone biopsy, and this will establish whether I am officially in remission. I think I am, and most hopefully will need no more chemo until the stem cell transplant. As for that, tomorrow I think they will have the insurance OK to begin to contanct the 4-5 possible matches that the registry yielded on first pass. It could be as little as a month until I am in again, for the transplant.

I have been frightened of the stem cell transplant, but was very inspired to hear that a 74 year old man was going home the same day as me - 2 1/2 weeks! after his stem cell transplant.

I see Dennis's last post he spoke again of the importance of everyone's support, and he always speaks the matters of the heart better than I can. But I will tell you that virtually every card I received brought tears to my eyes.

Well, Lucy just arrived, not in school as she should be - she swears her grades are not suffering from her frequent absences. She was accepted at all the colleges she applied to, and will go to UC Santa Cruz in the fall. I will be glad to have her nearby.

Much love and gratitude to you all,
Anne

Homeward Bound

Anne called me at work yesterday in the late morning with great news. Dr. Wolfe had just met with her and said her white count was climbing ( it was six on the latest blood work) so he thought she could go home by Monday. He even said, maybe this weekend, but it doesn't seem likely since she needs to get off all the antibiotics. This past week has been a mixed bag for Anne with some moments of feeling more herself, then back to those feverish bouts of nausea. But now things seem to be settling down more consistently so we are ready to make a break for it. As Steve noted in his comment Anne is receiving IV nutrition, liquid steak and potatoes directly into the veins. That should be finishing today as she starts eating regular meals. She is still a bit sore from the surgery but that seems to have healed nicely and is no longer a concern.

When I asked Anne last night if she wanted to write something for the blog so I could enter it for her she said her thoughts were too scattered at that moment. She has talked constantly about the outpouring of love she has received and how life changing it has been for her. This entire experience has certainly created a bond between she and I that could probably only come with many years of sharing. We are both so grateful for the incredible support that has been given and sustained over these past few months.

Namaste

Dennis

Never a Dull Moment

Yesterday afternoon at work, I got a message to call Anne. I figured she needed me to bring some thing to eat for that evening. When I called she said " I have appendicitis . They are going to operate tonight "..... "I'm on my way". I arrived at 6:00. She looked scared but managed to make a joke about it all. We ended up waiting about 3 hours before they took her down to surgery. We met with the surgeon and the anesthesiologist. Both were seasoned veterans. Anne seemed comfortable with their description of the procedure and their competence. Surgery began around 10:20 and was completed just before midnight. It turned out to be a more difficult then the usual, as they call it, "lap appy ". The appendix had adhered itself to the colon and they spent along time trying to find it. She returned to the room at 2:30 awake and feeling pretty good, mostly from the drugs that were floating around in her system. The rest of the night went well and in the morning she was sore but OK. There was still some fever which the doctor said was part of the post-op picture.

I am now fast forwarding to today Sunday as I didn't get to finish this post yesterday. I had to get back to the hospital because Anne was feeling worse. Her temperature spiked and the nausea returned. She was unable to eat much and was in some ways just plain fed up with her circumstance. I guess the hard part is that she had been doing so well this round with a very positive result. Now this...
I spent the night. She had some chills and spikes but did manage to sleep . The resident, Dr. Chen, was in this morning to say they were keeping an eye on her blood work which so far was good. She said they may do a CT scan of the abdomen for possible fluid collection which could cause the fevers. I just called the hospital and spoke to Nancy, Anne was sleeping. Dr. Wolfe had been in and so far the blood work is OK so they are waiting to see if the antibiotics will do the job. If she does have fluid collection or abscess then she will have to have it surgically drained.

That's all there is for now. As always your prayers and thoughts are much needed and appreciated. I'll try to post again tonight.

Love to All

Dennis

P.S. Anne just called (12:45 ) to say she thinks the fever has broken. She was in a big sweat and is now a little above normal and feeling better.

GREAT NEWS

I'm rushing off to see Anne at the hospital but wanted to let everyone know that her bone marrow biopsy showed "0"... that's right zero cancer cells. Can you believe it? She is in remission. I don't think this means that there is no more cancer but quite frankly, I believe the Mylotarg got it all. What next? We'll have to explore all the possibilities. That's it for now. I'll put new info on the blog as quickly as I can.

Dennis

The longest yard

Anne has had a pretty steady and gentler physical course this time around which makes waiting for results probably the most painful part of the process. You can't take a pill for it and we don't have a fast forward button, so we just wait. While I'm glad she is feeling so much better this time, the physical issues last round dominated her awareness and required constant an immediate attention. She didn't have the time or the energy to miss being outdoors. She has and continues to face all of this with incredible grace and dignity. She is admired by the staff and has befriended the other patients and their families. But it is this endless waiting that is so difficult. In someways she needs our support more now then ever, even with her feeling so much better then last time. A note, a card, a poem, or photo and of course prayers will go a long way to get her through this period. I'm sorry that I haven't been able to get to the blog more often. It's been hard to get to the computer. I would encourage anyone to jump in and add a post even if it's about a brief encounter with Anne on the phone. She is beginning to use the phone some. She's been wanting to place a post herself but has had problems trying to use the computer at the hospital. Hopefully we'll get her on in the next couple of days.

A brief medical update: She will be getting a bone marrow test tomorrow to assess the percentage of healthy tissue versus the non healthy. And, sometime in this week we should have the results of Steve's match kit.

Love to All

Dennis

Still doing OK

I believe that, besides Anne's shear will to move through this gracefully, the wealth of prayers she is receiving has made her experience this round much gentler. At least so far. We spent a wonderful Sunday afternoon together and even were able to snuggle some, making sure we didn't foul up her IV lines. Anne is having some bouts of nausea but nothing like last time. She is highly in tune with the subtle changes in her body and has become masterful at timing the different medications to control her reactions. This is not to say that she is home free. Things may change as the chemo is just starting to do its work. Tonight she got the last dose and we cheered. With prayer and good med management maybe the next few weeks will go smoothly with a minimum of discomfort and her nemesis, nausea, which she hated most. Right now she has vitality and is able to get around in her room and into the halls. So we can only hope it will continue that way. There is really no information at this time regarding the effects/results of the therapy. We'll know more in the next few weeks.

Steven returned the test kit to UCSF that will determine if he is a compatible marrow donor for Anne. It is her hope that he will turn out to be a match but we won't know until the end of this week or the beginning of next. Fortunately her chromosome type is fairly common according to Dr. Damon and it shouldn't be to difficult to find a match in the donor pool should Steven not work out.

Anne is feeling all the love and prayers coming her way and speaks of it with deep gratitude.
She is spending her days in reflection of this whole process which she will share, I'm sure, as she gets past the phase of the therapy.

Much Love to All,

Dennis

So Far So Good

We are now into day 3 of the chemo. Anne got the Mylotarg on Tuesday and she said she felt a bit of bone pain in her pelvis while the I V was running. The pain stopped afterwards. That was it for the Mylotarg now she is getting the Ara-C and something that begins with Fl...... There have been some minor bouts of nausea but so far she is doing OK. She's spending a lot of time focusing on her internal process both physical and spiritual. Her moral is high with rock solid confidence that she is on the path to healing. To me she looks more beautiful then ever. I'm not sure I will recognize her when her hair grows back. Sunday will be the last day of chemo, then the next few weeks watching the numbers and dealing with the aftereffects of the drugs. I'll let Anne fill in more of the personal details as she is able but for now your constant and continued prayers are the best medicine.

Much Love

Dennis

Back in tne hospital

Today (Monday 7/26) Anne returned to the hospital to start another round of chemo, She was in high spirits following the almost restful week at home and bolstered by the outpouring of love and support that has been coming her way. She was also given some very promising news regarding the next round of therapy. Her doctors have determined that she has a particular type of cancer cell that has a specific "marker" connected to it. Having this marker allows them to use a drug,which I believe is called Myotarg. This drug attacks and kills only the cells with the marker. It is part of a new class of chemo therapy (often called "designer drugs") that become active only in the presence of cancer and are not harmful to normal cells, as are most chemo drugs. She will still be using some of the traditional chemo as well, as they don't know what percentage of the cancer has this marker. They did say the percentage was very high if not all.
If it is in fact so, then this is the miracle we have all been praying for. The drug, even though it does not harm the normal cells, is still extremely toxic. She will be feeling very sick from it for a number of weeks while it is working. We have no idea what this will look like yet but Anne is asking for your prayers and your patience. She will not be taking phone calls during this period because she will be focusing all her energies on the work that is being done internally. I will do my best to keep the blog up to date and respond to whatever questions you have.
When I left her tonight she looked radiant and ready. She said she was glad to be back in the hospital because she wants to get on with the work of getting better. And for her the sooner the better.

Bless all of you for your continued support. We have much to be grateful for.

Much Love,

Dennis

Anne from home!

Yes, I am sitting at my computer typing. Today is the first day I felt up to dealing with the computer in any way. Coming home has been filled with many experiences and feelings. The very first, bliss, though a bit of disorientation, to be returned to the world of sensory stimulation: bright colors in my house, the flowers of the early spring here, walking outdoors in fresh air (the weather has been very accomodating). But also feeling very vulnerable to be out of the hospital with such low blood counts. Much worry and fear rose to the surface, and the first two nights, the only sleep I got was nightmares. I spent the next day flat out in bed. Then Dr. Medicine (aka Dennis) arrived. Much joy, much processing, and some cellular connection that can't be explained but is so profoundly healing. I have been much perkier and happy since.

I have started watching funny movies! I really wasn't well enough before, but will attempt to keep it up.

Nancy is here caring for me. Nancy is an old friend from N.H. who assisted at Lucy's birth and is her godmother. Nancy emerged a few weeks early from a 3 1/2 year silent retreat to come help me. She is godsent- very present, quiet, happy to serve me, and nowhere else she needs to be.

So much for all the levels of my being to process in this short time. I described myself as suffering post-traumatic and pre-traumatic stress at the same time. My dear wise friends have helped me keep moving through things. This is a crash course in learning to take one day at a time, and I am a beginner at it.

I have wrapped around the warrior archetype. One day I thought, "it is like I have been dropped onto a battlefield." I now know I need to fight with my will as part of this process. Like a soldier, I will enter every battle not knowing what it will bring, and learning to move with my fear. And not knowing how many battles until the war is done.

I have realized that the only real reason to live is for my loving connections, and indeed, I do not think I would live without them. All of you are part of the web of my healing and I thank you again for your love and support.

During this week I have strenghtened my will and my faith and my vision. I ask you all to hold me in your minds as healthy and vital, out the other side of this journey living a happy life. See me with the strengthof body, mind,and spirit to undergo the rigorous treatments ahead to rid my body of the cancer cells.

I wish I could respond to you all personally, but know that your messages and cards to me are very meaningful and moving to me.

Anne

Belated Valentines Day

Anne was already home when I returned form Florida late Sunday night. I drove up to her house (about an hour with no traffic) on Monday afternoon. Her beautiful smile, sparkling eyes and hairless scalp greeted me from under the pink comforter as she lay in bed. We were so happy to see each other. Lip kisses were strictly forbidden so we had to settle for ones on the cheek.. well OK ..and on the neck but that was it. The past week had been so packed with emotion for both of us we reveled in the quite comfort of just being together. Nancy was near giving welcomed support and TLC, then she left to give us time alone. We talked a while and went out for a late afternoon walk. It was short as Anne was tired from a bad nights sleep. I cooked salmon for dinner with Nancy while Anne attempted to direct kitchen activities from the living room. I emphasize attempt, as she no longer has that authoritative demeanor she once wielded. We relaxed the rest of the evening, got a good nights sleep, and lazed around the next morning feeling, on the whole, a great deal better. There was a number of phone calls to make and some paperwork to tend to but mostly we just enjoyed "being". We took a lovely long walk in the sunshine along the nearby trail, her longest walk to date. It was a wonderfully Romantic day and perfect to declare our official Valentines Day for 2007. We did try to get Anne onto the blog but will need some help from Owen. I'll stop here so Anne can fill in the rest of the details along with her personal experiences when she is able to.

Much Love to All

Dennis

Anne gets to go home

Just got off the phone with Anne and she is scheduled to go home tomorrow (Saturday) in the early afternoon. She can't wait and she says she is already picturing herself feeling the fabric on her couch and savoring the feel of her own bed and covers. There have been some changes in her current protocol as the blood work numbers and bone marrow assessment show that she is not in remission. What is being proposed is her returning to the hospital a week from Monday to start another round of chemo adding a drug that is more potent then before. In order to proceed to the bone marrow transplant stage she has to go into full remission first. The week she is home will be devoted to her gaining weight and gathering her strength to sustain her through the next round. She wants everyone to know that it is not an uncommon occurrence not achieving full remission on the first round of chemo and she is prepared to move to the new plan. She will need to lay low the week at home and will have to avoid being exposed to illness. If she gets any elevation in temperature she will have to return to the hospital. So with that in mind she is asking everyone to be understanding if she is unavailable for visits or frequent phone conversations. Please refer to the blog as she will have more opportunity to utilize it at home.

Thanks for all the continued support.......Dennis