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

reflections of life

I want to thank everyone who have sent prayers and thoughts my way and to let you know that my mother passed on earlier today (thursday, 2/15) at 11:55 a.m. I was at her side along with the rest of my family. I was holding her hand, and as she past I felt as if I was escorting her to the threshold of her return to the spiritual plane. It was one of the most moving and profound experiences of my life. There was such a sense of wholeness and completion to be with this beautiful being, through whom I entered the physical world, as she moved out of it. After everyone left the room i remained with her alone for about two hours. The time with her allowed for a gentler transition for both of us. It will be a time I will cherish always. While I know that it will take time to grieve her loss I can return home with a sense of peace that her spirit is now with God and her body no longer suffering.

Anne and I plan to celebrate Valantine's day next week. She has been so supportive of me this past week. She is truly amazing. ........Thanks Sweetheart

Love to All

Dennis

Update from Anne

My dear friends and family,

It has been overwhelming, and transformative, to feel so much love and support. I am being cured of over self-sufficiency. It has been a time of heart opening. One evening I really got that I do not know a moment of my future now, and the deep preciousness of every relationship and every moment. Well, if this is what it takes…

Each day brings improvement, if not quite as quick as hoped for. My “numbers” rise, but not yet the big jump expected any day. Still, it is hoped I could be out as soon as Friday. To breathe fresh air again! And so many other pleasures. I will have to come to the clinic here twice a week for the first two weeks. Basically, they tell me the first day I really feel like myself again I will come back in for round two of chemo – 4-6weeks out. It should be considerably easier than round one.

Digestion still heading back on track, but my appetite is good. No weight gain yet. I have had a normal temperature for almost a day. I can walk the halls with vigor, but then hit the bed. Strange.

Many come in here with acute leukemia discovered in routing blood test, still feeling well. I now think I have had it for about six months, and rode it pretty far out.

Dennis’s mother still on this side, as far as I know, but I imagine is transitioning around now. Many family are there and it is very sweet.

With love and much gratitude,
Anne


Hannah and Monty,

So good to hear from you – let’s reconnect. Anne

P.S. From Russell: My last post had the numbers wrong. She had gone from .01 to .18 and needs to get to .5 to leave the hospital. )(I think this is correct?)

The journey continues

I saw Anne this morning shortly before I left for Florida. She looked radiant and was a great comfort to me. Our bond grows ever stronger. I am at my mother's bedside and she is near the end or, for all we know, it could be the beginning. Anne and I just got off the phone and she had been crying as I have been doing on and off all day. I am glad for her tears as I think it is a big part of her healing. Each day she has been getting stronger in mind, body and spirit. I was sick last week and have been out of touch. Anne and I have had some wonderful moments together walking the hall arm in arm or just lounging together in the plant less solarium. It is not what one imagines as romantic but somehow we have made it so. Life and love have become deeper, richer, and more meaningful in the past month for both of us.

I would appreciate your adding my mother to your prayers for a peaceful passing as I know she been wanting to move on for a long time

Love to All

Dennis

update

Hi All,

Anne’s blood numbers are increasing, her neutrophils are up from 0.1 to .8 today. These numbers are expected to climb and at 5 she is due to go home to Graton.

Dennis flew to Florida today to be with his mother who is gravely ill and not expected to last very long. Our prayers are with you Dennis!
Lucy was with her mom today and reported her in good spirits.
r

A Great Need

Out
Of A Great Need
We are all holding hands
And climbing.
Not Loving is a letting go
Listen,
The terrain around here
Is far too
Dangerous
For
That.

From Anne, 2-6-07

Well, I love this blog and the feeling of connection and support it gives me. I am especially happy to be hearing from East Coast cousins that I see far too little of. I feel so loved and held. Thank you all. And an extra big thanks to those who were able to stay with me. It eased the load so much.

Well that was a very intense chemo, with the other illnesses/issues attendant. I think I just left my body, and each day am grateful to come back into it some more. I am at this moment without discomfort, and finding some small appetite. Still, today was a new low weight. (eat your hearts out). Still assisted by marinol and vicodin, however.

There is a dry-erase board right in front of my bed on which they list my daily blood counts. The whites are still zero, the reds fed by transfusion and platelets. I have had 3 days of neupogen, a specific blood growth hormone, and if I am typical my numbers will come up this weekend, and I will go home some time next week. Being totally out of it has been good to make the time fly.

Lucy and her boyfriend David are about to visit, then Dennis. Not needing people to do things for me anymore, I realize how sustaining it is just to be in contact. Plus, the tiniest edge of boredom is settling in.

Well, when you start talking about boredom it is time to go. Please keep writing in the blog, those who are not being foiled by it. Dennis was sick the last few days, so I don’t think he has made any entries.

Love,
Anne

Update from Leslie Wed Feb 1st

When I arrived, Anne, although weak and in pain, looked and sounded much better than when I had seen her last week. Things quickly shifted as her nausea set in. It took her a few hours to gear up for her evening walk around the 11th floor. Finally we set out, the beast in tow ( this is what Anne calls her IV contraption) but Anne was not able to make the first turn before the sight of the food trays in the hall set off her nausea again, so we made a pit stop until the ativan that the nurse had given her began to kick in. Meanwhile we watched as a tall vibrant woman was practically sprinting laps around the floor with her own chemo IV . Anne wanted to know who she was and what stage she was in with her treatment and initiated a converstaion This woman was a hopeful sign for Anne of what recovery could look like after several rounds of chemo. After her rest she was able to make it all the way around the floor.

That night sleeping in Anne's hospital room, I slip in and out of sleep with many surreal, hospital lased dreams. I dream that its Valentine's Day and Anne is standing next to her hospital bed all dressed up and preparing for a date with Dennis. She brushes her long silky shoulder length hair. Oh, a new hairdo for Anne I think. The next morning Anne, feeling better and less nauseated, models the hats that I brought for her and looks quite lovely in all of them. Later that morning, when she is in the shower I notice hair on her pillow. "Anne I think your hair is starting to fall out." Back on her bed I comb and rake my fingers through her hair. It comes out in handfulls, then Anne continues to pull out handfuls and handfuls of her own thick, beautiful hair, welcoming this next level of transformation and surrender. What strikes me the most being with Anne is her total lack of self pity, not a hint of poor me. And certainly, not one of us who has witnessed her would deny her the right to indulge, if she so chose. Throughout all of this Anne remains strong and clear, even in her physically weakened, and nausea/pain/drug induced cloud. In the midst of her suffering there is this pure unflinching willingness to undergo her passage with humility and grace. Each stage is met with acceptance. She is and continues to be an inspiration for me and for all of us who love her. Leslie

update

Anne is recovering from the chemo, eating and walking - all very good signs. Her headaches are reducing in length and intensity and taking Marinol, oral THC derived from marijuana, has seemed to have greatly helped with the nausea so she is starting to eat. This is very important because as you can tell from the pictures, Anne has lost weight, and is not yet, but almost, at an all time adult low of about 133 (close to what she weighed when we first met when she was 19)

There was a cat scan and mri which showed a small gathering of sub dural fluid in her brain which was shown to be benign, not infected and probably a result of the spinal fluid extraction which occurred last week. This will clear on it's own and may have been responsible for the headaches and possibly nausea.

So, all systems go for her to begin rebuilding her immune system, go into remission and leave the hospital - the timing of that should be about 2 weeks, depending of course on how her blood work looks. Her spirits are good and she enjoys reading cards and blog entries. Unfortunately she can't receive wifi in UCSF so she is only getting blog pastes people have brought her printed out or on laptop. Cards sent c/o me or to her house in Graton will get to her.

Russell

Here's Rumi:

I've broken through to longing
Now, filled with a grief I have
Felt before, but never like this.
The center leads to love.
Soul opens the creation core.
Hold on to your particular pain.
That too can take you to God.

Anne Walking

I think she looks like a female Ken Wilbur here... She has been taking walks on her floor in the hospital, without needing to hold onto the rolling IV table.

Here it goes!!

Marcus, the wonderful day shift nurse, giving Anne the buzz cut - easier to manage but a deep letting go....

Anne with short hair

This was taken Friday 2/2/07. this is after Angela's three haircuts. Angela mentioned she looks like Annette Benning?

Catching up

It's been a few days since I've had a chance to write and considering it's approaching 12:30 a.m.
now is probably not a chance either. But I want to relay some of what went on this past week.
Friday around midnight while sleeping I heard a doctor paged on the PA system in the hall. Then I heard Anne's voice "Dennis"... reply "What honey"..... " They said something I think we have to go out into the hall"......reply"No they were just paging a doctor".... then she said with total innocent amazement "We're in the HOSPITAL???.... I wanted to laugh and cry at the same time. Chemo was finished on Saturday which was a relief. A few days earlier she remarked that the chemo wasn't all that bad. That was then but the rough road laid ahead. By the weekend the nausea was in full swing along with the eye sensitivity to light not to mention the itchiness on her back, chest, and stomach. She was managing it all and it took all she had (which wasn't much) to get through the day. Fortunately the fevers had subsided and by late Sunday she was a bit better.She attempted her first walk in the hall on Monday which didn't go very far but I wasn't there and don't recall the details reported to me. Overnight on Monday was the best yet. We both slept five straight hours without interruption. This must be some sort of record as there are no soap operas on to distract the staff from none stop vital sign taking etc. At 6:30 a.m. ,feeling refreshed, we attempted our first walk outside the room together. She was as wobbly as a new born calf and shuffled her feet ,in her words, like a ninety year old. We walked half of the floor and when we got back she was exhausted. We did round two in the afternoon for two thirds of the floor( much better), and the entire floor in the evening with a little energy to spare. Meanwhile the nausea is not subsiding. By this morning (Wednesday) the itching is gone as well as the eye sensitivity( Praise the Heavens). We took an even longer walk this morning. When I talked to her from work around 5:00 she was sounding great but still nauseated. When I got there tonight she had been running a temp and the doctors ordered a chest x-ray, blood work and added an antibiotic. We'll se what that is all about tomorrow.

I can't begin to thank everyone ( and it's not really my place to) for all the incredible support in both time, prayers and "stuff" that have been offered to help her get through this difficult passage in her life. It does and will make a difference.


Dennis