for Steve

Hi Steve,
I don't have your phone number or e-mail, but I wanted to talk to you about research. I would love your help, since Anne describes you as brilliant, in reading about all the different treatments currently being used for her subtype. Before Anne follows the standard protocol of UCSF, which I am confident is good, I would feel better if we were fully informed about all options. From what I have read there are a couple of things to consider. Could you please e-mail me? Anne walked three times yesterday, even though she is very weak. These are the hard days (as if the others weren't!) but I keep reminding myself that they need to take her whole body here to get rid of the leukemia. She is still the one in charge. It is hard to imagine anyone could keep you so busy in a small room, but through it all, she knows what she needs. And that is always reassuring. Things should start easing up (nausea and the like) in a day or two. Dennis took the day off to be with her, which is the most healing thing of all, I am sure. 707-696-9668. Angelawinquist@gmail.com Thanks.

Update from Anne herself

My mother wrote out an update for the blog, which i transcribed.

So this is what it takes to be the center of attention. Well i may be the center but what i see from here is a web of connection and love that is growing and deepening. It is sunday morning following another highly interrupted and sweat-drenched night, (my temps have been running 103-104 at night), possibly due to pneumonia but mostly the AL and the chemo. So they gave me a steroid to bring down my temperature and finally kill the four day headache i have had since the spinal tap. My temperature has been normal since then.
The terrors of chemo:
The first few days weren't so bad, then i started getting more nauseous. I'll share just one scene. Middle of the night, no balance, killer headache, nauseous, i got diarrhea from the chemo, Blaugh. Plus orange pee at the same time while puking, not another gross scene will ever be shared. Backtracking, i had very bad Thrush [in her throat], probably saved me time, since I couldnt swallow much and that's why i originally was admitted to the ER. It took away my voice completely, which is still coming back.
I think the ER doctor was a little shocked that my FP had done no blood work. I'd been to him three times in 11 days, it really didn't look typical. The bloodwork showed a pretty clear picture of acute leukemia, followed by a definite test three days later. To the first test my friends responded "oh no, we're sure it's not", but I think I'd known for weeks that I had something i could not heal. So i felt relief and immediate surrender to both the medical system and to spirit. I wondered why I had got it and it seemed very clear for me, for spiritual transformation which I had been praying for.
My days in the hospital in sebastopol were sweet, i was in a state of golden faith and turning my discomforts over to resolve old past deeds, to help world suffering, to pray for a healthier world. That got much harder on the chemo here, so much warfare, so many drugs, but the structure was in place. The heavy chemo ended yesterday, the lighter one today. So the next two weeks I will still have some symtoms [of the chemo], mostly to epithelial tissue area and digestive tract, I already have a rash and irritated eyes which should be resolved soon. My hair should be gone by the end of the week.
Later this week they give me a hormone to pump up my neutrophils. I supposedly leave here at the end of the month, with no cancer and a pretty functional immune system. The doctor just told me the results of the chromosome test, i am "normal". Lots of people have an acquired bad bit [in their DNA] with the AL on it that gives them information for the prognosis and treatment. The best part is i get to use my own cells for the stem cell marrow transplant.
So at the end of this month i go home for 2-4 weeks. After the next chemo, only four days, they harvest my stem cells. That stay will only be 3.5 weeks. When i come back in another 3-4 weeks, they give me a pretty tough chemo, to kill off the marrow. Then they do they transplant.
I am sure i am meant to live, and i am sure your prayers are needed.
Now the fun news, sunday, jan 20th was Dennis and my 9 month anniversary, he was sleeping here. I woke up in a radiant bliss. I feel clear, I wanted to propose to him. I got to sit with it a couple of hours, til he awoke and I wrote a beautiful proposal while he got washed and dressed. I have had so much resistance and defense to this relationship. I guess it took the reality of life and death in my faith to get over it all. He read it, wept, and accepted. He is simply the loveliest human being.
Thank you all for all of your love and concern, I love hearing from you by whatever form works for you. Phone is not good yet, though. All morning i've been crying about love.

Lucy's alter

Lucy made this the first day she found out about the diagnosis. We keep the candles burning until Anne comes and blows them out....

Night Monsters

Next to her bed at night this machine, which Anne is tethered to at all times, can look frightening when you are in a fever delirium ...

Anne @ UCSF

taken Friday 1/26/07

Anne in room 1132 Long hospital at UCSF oncology unit. She has not been allowed to leave the room as of yet. We are waiting for her to have the stamina and immune system to walk the ward.

today at work

I had a mammography patient today who mentioned she had had quite a year with her 13 year old son. He, like 3 other boys in his class (what is going on!!!!???) had leukemia. He had AML, like Anne, and had just finished his treatments including bone marrow transplant. She was a lovely woman, and she sent Anne her encouragement, saying that the time actually goes fast, and there were some pretty tough and scary times, but he is clear now, and is building up his immunity. She described the same treatment plan Anne has, and was in the same hospital as Anne. It was very helpful to hear someone who is a few months ahead giving encouragement. She said that at the end, you (meaning everyone involved) are a whole new person with different priorities and appreciation of life. I am so happy to know that the last bag of this round of chemo has been hung, and we will see more of Anne soon. Angela

updated th night, fri

My shift last night with the force of nature. Typical nigttime stuff - she spiiked a fever at 103.4 around 1am which then came down to 98.7 by 4am. Through vomiting, the runs, headaches, and deep fatigue that are all normal side effects of the chemo, Anne's will to live and inner power helps her stay focused and sharp, she is amazing. Being there with her is a meditation in on call alertness and witnessing of myself and her. I found myself feeling waves of love, grief and the conviction of her healing. I wished I could wave a magic wand over her and have this disease dissapear! But she complains not. It reminds me of the births of the kids - the deep dedication of the task at hand coupled with an unwavering astuteness. I have some pictures of her in the hospital I will post when I get home. Lucy is on duty now and Dennis through the night. I have to say the staff at UCSF are high level and comforting. She is having the last bag of chemo hung tonight which will complete by Sat am. All should be uphill after that.
more later
Russell

Some good news

While Leslie spent last night and all day with Anne I was at the hospital between errands and kid care. Thank you Leslie!! Anne had a normal temperature for most of the day and reported feeling "not too bad but could be better" Her voice is nearly back and has sort of screen star vamp's whisper like quality. She slept a good part of the day and seemed comfortable physically and emotionally. There is a certain detached curiosity she has at the this whole process she is going through that allows her to remain in control. I'm not sure I could do it but is very much her style. It appears that she is digging deep wrestling with what ever is attempting to take over her body and she is winning. This is evidenced by the inexplicable improvement in her daily blood work that the doctors are somewhat baffled by. Her red blood cell count has steadily risen over the past few days meaning of course that the bone marrow is doing its job, at least part way. Anne is absolutely confident that she will rid her self of this cancer and most likely in record time. Got to be ready for spring gardening.

Dennis

Overview of the coming months

I wanted to give a basic idea of what is ahead, all subject to Anne's reactions and levels of healing and sub-type of AML which will be determined in a few days. Friday, the 26th, will be her last day of this round of chemo. After that, for the next week, the chemo will be in the tissues, doing its work, killing the fastest growing cells. Besides the cancer, the fastest growing cells are the epithelial cells which line the digestive tract from the mouth to the anus. This opens the possibility for painful sores on the inside of her body. Thats the bad news. The good news is that they are the cells which replicate the fastest and will heal in about a week. After that week, they will use a drug that stimulates white blood cell growth, and her body will have already begun making healthy red blood cells and platelets as well. This means that after next week, we will see Anne beginning to rebuild, and to feel better. The leukemia will temporarily be gone. When she passes certain tests, and is feeling strong enough, probably another two weeks, she will go home for one month. During that time, she will go to San Francisco twice a week to be monitored and get transfusions if needed etc.
After that one month at home building, she will return to the hospital. If she has a certain subtype, they will harvest her cells for a future transplant or if it is another type, they will begin typing her brother and looking for an outside donor for a future transplant. She will go into the hospital and repeat this same cycle, staying three or four weeks and coming home again. Another month at home, and then back at it again. After that, the transplant happens, and Anne works to rebuild her immune system for good. Of course, there are always variables, but that is the plan. They said that the transplant time is the trickiest, the body goes through a lot then. The practitioner reminded me that when Anne came in, her blood was 95% leukemia, so she is going to be much stronger when she is due to face more of this next month. I hope this makes sense. I think it is important that we know this, so we all know that we are in it for a good part of the year, and it will take all of our love and support to make this the smoothest possible transition to health and growth for everyone. Angela

A much needed lift

Last night (Tues 23rd) was a tough one for Anne. I woke out of a sound sleep at 3:00 A.M. to see her shaking with the covers pulled up to her chattering teeth. I called the nurse and placed my body next to hers to help warm her. It took a while but she finally stopped shaking. All the while the nurse (David a very nice guy) was taking her vital signs and contacted the doctor. Her fever reached a peak of 104.2 She was given tylenol but repeatedly asked for it, having no memory of taking it. The doctor showed up around 4:30 and ordered a chest x-ray and added a new antibiotic. It was sometime after five when things settled down and we were able to get back to sleep. At 7:00 the day shift nurse (Britta, with a lovely Irish accent) came to check in. Anne was still running a pretty high temp around 103.0 Britta was right on top of things and began to set things in motion to help Anne with the fever, nausea and head pain she was having. We both fell back to sleep before the nurse practitioner ( Kathleen ) stopped in to evaluate Anne's condition and progress. Yesterday she told Anne to be prepared to spend the next nine months devoting her energies getting rid of this cancer. I think this was hard for Anne to hear at that moment. But ultimately this can only be approached on a one day at a time basis no matter how long it takes. When she was done Angela arrived for the day shift and with a breakfast buritto to share. Thanks Angela. She and I met with the social worker who was a great resource for financial aide, including a transportation/parking fund from the Leukemia foundation for $500.00 per month. Save your toll and parking receipts as it is done by reimbursement. Anne was a bit better but not by much before I took off for work around 10:00. When I called from work at 4:00 I heard her real voice and spirit back again. I couldn't hold back my tears of joy. She said that Britta had really worked hard to tackle her head pain and nausea and she finally felt a good deal better. it was wonderful to hear the vitality in her voice. It wasn't her full normal voice but it was as close to it as it has been in the past week and a half. I really needed that lift at that moment and Anne knew it and was there. You are amazing Annie.
Leslie had been with Anne in the afternoon and was staying the night. I arrived back at the hospital at 9:00. Anne had been started on an additional chemo drug called Donarubisen (don't copy the spelling I'm sure its wrong) She was too wiped out to keep her eyes open but it was good to see her resting peacefully. It was no doubt drug induced but good to see just the same.
Leslie and I had some time to connect that was quite wonderful. It truly is amazing how the love that is pouring out to help Anne is spilling over onto all of us. What a gift she is giving by taking this treacherous journey that will create opportunity for a healing process and for forging deeper stronger bonds with friends and family. Thank you my darling Annie

Dennis

Need a small boombox, cd's

For playing cd's in the hospital. Contact Russell, (707-829-3377), for transport to UCSF . Also any healing, soothing music for her to listen to.
r

Update from Leslie

Update Wed Jan 24th
Last evening I took the Anne vigil between Owen and Dennis. This was my first long visit with her after returning from Mexico on Sun. My first impression upon seeing her was relief and a deep sense that she’s going to make it... What’s heartening for me to witness is her deep presence, surrender and acceptance of what will prove to be a long and difficult journey - a journey she recognizes as a spiritual one.
On the more physical level, she was experiencing a headache from the spinal tap on Tues and has a rash on her back from the chemo. She also had a brief bout of nausea and was given a dose of atavan and promptly fell asleep, open mouthed. , looking like a pale but peaceful angel. As I alternately read and witnessed this woman who has been a part of my life for the last 15 years I pondered our relationship and the fact that there is no word to describe it. To me Anne is family, friend, community member, first wife of Russell, mother of Lucy and Owen, and a woman I have grown to deeply love and respect.
Leslie

visits

This blog will be our source for a schedule of "sitting vigils". It is great to post your availability, and if you haven't heard back, call Dennis or Angela to set up a time. Please, right now, don't show up unexpectedly, the chemo is intense, and we are trying to keep things well planned. Not only is her immune defense nil, any confusion is stressful and distracting. This will be a nine month process,so don't go away! everyone will be very needed and appreciated a little down the road.

Sending mail to Anne

For those wanting to send something to Anne, her address is as follows. (No flowers or vegetable matter of any kind will be allowed in her room, please. She has Neutropenia and can not be exposed to any potential infectious agents.) In the comment section under this post will be requests that Anne has for things we can send her.

Anne Bocchino
PATIENT MAIL
1132 Long Hospital
San Francisco, CA 94143

This is good for the next month. We also are picking up mail at her home at:

316 S. Edison
Graton, CA 95444

russell

update

So i just spent a little time with my mother, she's very tired, but she's still the same personality.
Just an update for those who aren't in contact with her. She's started chemo, and the drug she's currently on is called cytarabine (sye-TARE-a-been). She's about half-way through the first course, the objective being to get her white cell count to zero. For those wondering about the drug, it has many of the same side effects as most chemo drugs, including eventual hair loss, tiredness, nerve damage, nausea, eye irritation and dizziness and weakness.
Currently she's only experiencing the dizziness and weakness. Other than that she has a headache from the spinal tap they did yesterday, and her fever is continuing to hang around 101, although it spikes occassionally, usually at night. This could be a reaction to the drugs, as opposed to an infection or virus.
I know that's not very pleasant but i thought everyone would want to know exactly what was happening. She's still very lucid and she seems to have a great inner strength, and i have no doubt that she has the strength to beat this.
Owen

Blog Layout

Hey guys, glad to see the blog is working as planned. I'm going to change it a bit, based on some ideas i've had. The front page will stay the same, so that people can still post their updates much as we have been doing, however i'm going to try to add some other sections, one to give a big picture, with a detailed explanation of her condition, treatment, and timeline perhaps, so the updates are within context, and so newcomers can get up to date easily. Secondly I am going to look into a forum so non-authors can converse and ask questions without gumming up the main page. Also I think it would be a good idea for updates to include medical information like fever etc. just so people know exactly how she's doing.
Owen

This past week

Last Saturday(10 days ago) was the first of three much needed days off for me. I was aware Anne had the flu and I was looking forward to being available to help her out. A real privilege and a rare opportunity, since I am in her debt for many, many times over the past 13 years that she has anticipated my needs with the many migraines I have had; shoulder rubs, grocery runs and feeding my kids, and just calling to check up on me. I could actually take up the whole page as I think of it, all the amazing ways she was a pillar in my life.
For the first two nights as I slept, I felt Anne's condition come to light in that nighttime consciousness, and I came to know that she was very sick, and that huge forces were at work. In the light of day, it was hard to hold on to that. It was like being in a trance, unable to imagine a force of nature like Anne could really be weakened.
It is the same now. I am aware of her precarious position, this awesome illness. When I am away from her, I literally wring my hands at times, unable to imagine , believe,or understand (like my daughter Tallie said, "mom, this is ANNE!!") Yet when I am with her, even when she feels too weak to talk, all that I see is that amazing strength, now deeply focused. Right now, if you were with her, you would feel better. She is not just showing strength, she is the embodiment of it. I get such comfort in the way she reaches for the note pad, chin jutting forward, face set, as she writes and writes and writes. And points, put it here, no not there, here. My body relaxes, Anne is at the helm of this, looking ahead with surety. It is now one third of the first round of chemo, and she looks better than when she first went into the hospital. We don't know what she will go through on this trip, how hard it will be, but I do feel that huge forces are at work, with Anne being the biggest of them all. I am so proud of her and so in awe of her. I also feel all the love and prayers are surrounding her, and I know it will continue. Angela

Our feisty beauty

Out beyond ideas of wrongdoing and rightdoing
there is a field. I’ll meet you there.
When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase, "each other"
doesn’t make any sense.

-Rumi

How to use Anne's Blog

How to use this blog: At the top right is the archive menu for earlier posts. At the bottom of the page is a link for info on AML. You can bookmark page and check in everyday for new updates about Anne’s progress. You can just choose to read or read and post comments yourself. At the end of every post is a link for comments. This is the place for prayers, comments, questions, any information you may find helpful to pass along. Anyone with a google account can post a comment - it's free and easy to sign up for. To sign up for a google account, follow the “comment” section after a post – (if you have gmail you already have a google account just use your gmail log and password) .

First day of chemo

Great job Owen!! Thank You.
Anne was sleeping on and off today as expected but managed to order me around sufficiently for me to know she had not given way to the drugs. I was a little worried when I purposely tacked a card on the bulletin board crooked and she didn't protest when I refused to straighten it.
Everyone has been so incredibly supportive and it truly makes a difference in her recovery This is going to be long process to her eventual cure and there is every reason to believe that she will be cancer free at the end of her full course of treatment.

The treatment protocol will take approximately five months.She will be in the hospital (UCSF) for three month long chemo sessions with a month at home in between each session. Currently she is in room 1132 in the Long hospital wing. She is receiving excellent care from a very warm and compassionate nursing staff, and the love, support and prayers from all of us.

Please post any questions you have regarding the process or details you're curious about. Much can be found on the web looking under Acute Meyloid Leukemia.

As far as visits go we will have to take on a day to day basis as we have no idea what she will be up for. Right now she needs to lay low and keep visits to a minimum. But she will need someone around as an advocate and we're working out a schedule that can be signed onto.

Again, thanks to everyone. Anne is grateful for all the love and prayers coming her way, as am I.

Dennis

Blog Created!

well, i've created the blog. I will try to set it up so whoever is with Anne can update it with the latest information. It's designed to be a spot to get the most up to date information on Anne's journey.
Owen