A New Week.......

We had a treat for the 4th! Casey drove Anna to our house to enjoy the block party with our lovely new neighbors. He went on to see his family in Danville and missed out on the fireworks we could see from our new back yard. So, is this what it looks like when a miracle occurs? Does the sky light up with color so bright? Or is it more personal and quiet with the heart gently opening and love pouring forth?

Any way, to continue the saga, what is happening this week? Yes, more fun, 24 hour pee collection, accompanying blood work and heaven forbid, the dreaded DMV. It would figure that now Anna has to go to renew her license. It is just another one of those things that we are scratching off of the list. Casey and I are her usual drivers at this time and after the transplant she is not allowed to drive for 3 months but after that, watch out California, there will be no stopping my daughter!

This is also a week of appointments for me. Yesterday I took my nap in the MRI. Despite the clanging and banging of the magnets I drifted off to the sweet sound of Nora Jones. I got a pic of my knee. The bursted cyst appears to be bursitis. What a drag. I see the orthopedist next week. Also on my agenda is the dentist and dermatologist. I am checking those must dos off.

But I want you to know that Anna is very stable right now and in fact is feeling better each week as she acclimates to her new normal. She attributes finding her new strength and sense of well being to a couple of things, one very important element was being diagnosed with sleep apnea in January. It took a while but finally she was fitted with a bipap machine and it has made such a difference for her. She was so exhausted from the lack of restful sleep. Her brain could not think clearly and she had absolutely no zip. Well, the zip is still lacking due to O2 needs and crappy lungs but she feels so much better being able to sleep deeply without the snoring and constant waking.

Another reason is Cayston, the new inhaled antibiotic designed specifically for CF lungs as well as diluting the Colistin so that it does not make her airways so tight. This attack seems to be working putting the beasties and bugs at bay so that she can have a break between exacerbations and hospitalizations.

Getting Cayston was a hard fought battle for CFers. The FDA denied the drug during the past administration for what appeared to be internal political reasons and gains, not because there was anything wrong with the drug. Finally, at the end of last year there was another review in Washington DC. Gilead presented their case before the FDA and one of their representatives, Beth, a CFer attorney and friend used Anna's story as a test case and example of why Cayston is so needed by the CF patient community. We were told that the story Beth portrayed was very compelling and we were thrilled that it was finally approved. And indeed it is an important new drug in the arsenal for CF patients.

Another element in Anna being stable is the help she is receiving. I can see that she probably has needed more help for a long time now. She has so diligently worked to have a "normal" life even though she has been on disability now for nearly three years. There is a reason she received disability, SDI. Life has been tough, but she organized her life the best she could to make it work. She kept her house and life in order by grocery shopping, cooking good and delicious food, going to appointments and appointments and appointments at Stanford Medical Center, seeing friends and family when she could and enjoying and maintaining her relationship with Casey. Now that I and all of us are helping with not only the three treatments per day but also the other things that zap her energy she has been able to restore and gain a little ground to feel some strength. It makes us all feel so good that we can help her so much. She only asked for help when she really needed it and she so needs it now.

So, on we go with this week and getting closer to the day she is officially listed.............

I Appreciate You ALL!!!!!!!!!!!!!!!!!

In 2002 I volunteered with Breathing Room, The Art of Living with Cystic Fibrosis and I also participated in a photo and poem about my experience as a CF Mom. I wrote a poem, Welcome to My Garden. I wrote how we were in the summer of our time with life in full bloom. CF was always with us but Anna was growing and living well. I knew that seasons change and that they would. At the end of the poem I wrote this:

So if you also see me gardening during
the harvest moon
the winter solstice
the emerging spring
Help me find the path
Gently remind me of
the special patience
the kind of not knowing
the deep letting go
the courage.

Hold my hand
Make me laugh
Hug me tightly
Hug me often
Love me dearly.
www.thebreathingroom.org/cg/cg_rm01_welcom

During this change of season, thank you to everyone who is holding my hand, making me laugh, hugging me tightly, hugging me often and loving me dearly. I feel you, I am so grateful for your kindness and caring. I need your love and connection. It would be much too difficult to travel this type of journey alone. I can see from all the support, that along the way I have found such lovely people in my life who are willing to walk with me and send love. Wow, what a gift.

You say things like,

"I want you to know that I'm very close to you right now in spirit. I read your words and feel like I know something about your heart ache. I relate to "tired to the bone". Your words are also very healing to me. I'm thinking about you often during my day........I stop and say a prayer every time you come to my mind. I pray for all of you but I'm saying a special prayer for your strength and health. Mother strength renewed. I know how much you are doing."

"I wish I could wrap you in Love that would comfort you and help you feel supported and sage like a newborn infant held in her mother's arms. I wish I could hold you when the tears fall at the immensity of what you are living now." "I love you, love you, love you."

"Your spiritual power will get her through this, because she has it too and together, with the prayer of all your friends and family, will unfold this miracle."

"You know I'm praying for your Miracle and believe with all of my heartthat it will happen. My meditation group meets on Friday night. We willput everyone in our prayer circle. We will say your names and releasethem to the universe with love."

"you are right... I am with you every minute in spirit... tears streaming down my face, and with my heart full of hope and seeing that miracle embedded in the fortune..."

To Everyone, all of our family and friends, Thank you, Thank you, Thank you for helping me to find the path, keep the path and make it to the miracle......

Crows, A Visitation

Crows came to my feeder yesterday and today in Livermore. This was discovered when Sara and Lou came to dinner last night and as they entered the house Sara said, "You have so many crows in the front yard!" I went to look and there they were at the antique birdbath turned bird feeder. Hmmmmm. On the one hand it is not a mystery why they were there. I bought some new songbird food with pieces of dried fruit mixed in. I am sure they were attracted by that. On the other hand, I have a personal relationship with crows.

As I left this morning to return to Sunnyvale they were there again munching away and talking. I hear you crow. I don't think a lot of people really appreciate crows. They usually are not well liked. They can do mischief and they are scavengers, but I like them. They are fascinating to me. I talk to them and think they talk back to me. Besides, when I was spending time in a Lakota Indian Circle our medicine teacher painted a drum for me with what she said was my power animal, the crow and raven. The native peoples consider the crow and raven as the eagles of the west. The west is where the sun goes down into the darkness, into the mystery of the night. It is the mystery that is a large part of this experience. Depending upon transplant to save a life, to give new life involves a web of interconnectedness that is mind boggling and so very mysterious. What is the unseen agreement or connection between the donor and the recipient? Is this a special or ancient karma coming to fruition?

Another sign, yes, to lift my spirits and give me a kick start to another week. The crows call and tell me about the mystery of it all. They give warning. They are dark and daring, aloof, tricky and smart, very smart. Just seeing them there made me feel OK, things are in the right place. I thank them for sharing a little of their crow-ness with me.

Sunflowers Smile Even When You Cry

I am home in Livermore now for the weekend. Casey is caring for Anna. I get to be home with Doug and Roxy and my comforts for a couple of days. This house is new but my things are my things with the history of my life reflecting back to me. It is my space. Our garden is new too as there was zero landscaping when we bought this house last November. We and the landscapers are still finishing it all. There have been multiple problems but it is now coming along. I trimmed the sunflowers of their spent blooms and put in the tomato supports. It is a smaller garden that I can tend to much better. This kind of puttering is nurturing and healing. Sunflowers smile even when you cry.

It is good for me to be here with the garden, near the vineyards and the birds at the feeder because I am tired, so tired, bone tired. We all are. It is the physical exertion of going every minute that comes with caregiving, the worry about a very sick daughter, the worry about the well daughter, the worry about the husband, the missing of my home and of the sweet dog who loves me and the body that is no longer so young any more. Yesterday I was noticing this tired, this feeling. What is this feeling? How can I describe it? It is a different kind of tired that is also laced with an anxious energy.

The feeling sits within my core. It is located in the belly and goes up to the throat. There is a dullness that comes into my body when I breathe in and sigh out. It is a fatigue, I guess. There are aches and pains around my legs, my stride is slowed. Taking a nap helps but does not get rid of it. I think it is because of my age. I am not as resilient as before. And this is not over. We are in the thick of it. So, I think, of course you feel this way. It would be strange if you did not. Your daughter is fighting for her life. How could I feel any other way? I will be tired until we get this job done and then, vacation.

Waiting in the cardio cath lab for Anna's final procedure of the week on Friday I could feel this malaise, this bone tired. There we were after a week of tests and this and that all over Stanford Hospital and I looked at her. Most of the time I just see Anna and sometimes I get another type of glimpse and I can not believe what I see. My beautiful daughter with plastic O2 tubing in her nose, without the vim and vigor that defined her cute personality, now with the constant persona of sick girl. It is shocking when I see it, when I stop and it stares at me. It makes me sad, so sad. She is so vulnerable, she is so sick that she needs a transplant. That is so big. The concept overwhelms. Then I think, but this is what we have been talking about for years. This is the miracle that we have seen time and time again in many of our CF friends. But it is so poignant, so deep in flavor that the taste buds of my mind must reconstruct a new sensory apparatus to decipher the complexity. That in itself is exhausting and haunting.

I know that in order to do this work and to get to the other side I must accept it all. I must look at the tiredness, the sadness, the feelings in my body, the potential loss, the present loss, the work ahead, the declining health, my own aging, all of it. That part is not as fun as finding the fortune cookie fortunes and the signs of hope and love that surround us, but all of it is true. All of it is what we are experiencing. The release of joy can not be truly felt without knowing its opposite, the recognition of a miracle can not happen without facing the truth of what is. We live in this world of all things, life, death, health, sickness, happiness, sadness. Where we usually wish for the fun parts we can not know them truly and their gifts if we do not allow ourselves to befriend the un-fun parts.

There is a Buddhist teaching that says, it is all the same taste, the very same taste. It instructs us to open to it all and feel it all. When you do, you sense the deep joy, the deep miracles that are there and ever present despite the flavor of the moment that distracts you with its coming and going like my tiredness and my hopefulness and my happiness and my sadness.

There is an ever present love, an ever present calm, the flowers still bloom even though you are sad, the birds still sing and visit the feeder even though life is tough, the seasons appear and disappear as will this moment...........

It is all the same taste, the very same taste and sunflowers smile even when you cry.

I Kid You Not!!!!!!!!!!

This is how the week of transplant evaluation ended........... I kid you not! I had to take a picture to prove it to you. It was from another fortune cookie at Anna's condo after dinner with food from Hunan Garden. There were three cookies and this was mine. I opened it just as I was to leave for the evening. Can you believe it? Unbelievable, but I'll take it. After all, I have a miracle on order. What better way to be told it is about to arrive than from the mail of a fortune cookie? It makes total sense. But, Anna and I have sworn, no more fortune cookies, this spate of lucky ones can not last forever?

So, the unseen magical world seems to be in order and all in our favor but this week was also about the physical world and Anna's body. That is all in order too. She is in "the window". The window is where a patient is sick enough to need a transplant and well enough to heal from it and thrive. That is where Anna is and there is nothing to disqualify her from the surgery. They know about everything now about her body, no secrets left. She is in great shape to make this a success and yes, she passes, she will be accepted and on the list shortly.

We met with Dr. Weill on Thursday in the pre-transplant clinic. He was reassuring. We really like him. Since Dr. Weill is now also an adult CF doctor we have come to know him in the last 2 years and find him to be impressive. Anna feels that she is in great hands and is confident that all will go as well as it can with the team at Stanford. After the meeting, Anna asked me, "did you notice my reaction when Dr. Weill said I can have the transplant? I excitedly clapped my hands! Mom, don't let me forget that when I get scared." I promise, Anna.

So now what is next is the final approval of the insurance company, it may take a week or so. The team meets on Mondays and of course next Monday is a holiday so her case will be formally presented on the 12th. Dr. Weill said there will be no issues as she is a great candidate. So perhaps the listing will be on the 13th. Wouldn't that be poetic justice? That is Anna's 29th birthday. What a present! How many of you want a transplant listing for your birthday? Bet it is at the top of the list for many of you, just kidding............

So, it looks like what the fortune says may indeed come true, "You will soon witness a miracle", FABULOUS!!!

Roxy

I am not alone this morning when I wake up. Four of us slept here last night. Me, Doug, Sara and Roxy (the dog) crashed in the crash pad. We have this spot in apartment 1513 to gather our forces, gather our family, surround our Anna, and make this happen. It is a family affair and our main focus now. It is sweet to wake up early and tip toe to my coffee while my darlings are still asleep in the other room. We are so lucky to have each other. Humans need relationship. Humans need love. Humans need support. And humans, at least these humans, need pets.

I haven't seen Roxy for a number of days now. What a joyful dog and loving friend she is. I was so lucky to find this apartment so close to Anna that allows dogs. This was essential. Our dogs have always been such an important part of our family. This dog though has been exceptional. She is a dear, dear one. Anna and I found her on Craigslist after Tashi died about 2 1/2 years ago. This was an important project for Anna. She wanted to be sure that Doug and I found the right dog. She spent many hours researching for us, visiting "the pound" and sending me updates on dogs available for rescue. Then we found the posting about Roxy.

Now, Doug was only allowed to participate in this process from a far for a very good reason. He would take any wayward dog soul home with us. Any pooch that needed a new home would have tugged at his heart and we knew that was too dangerous. So, it was me and Anna on the hunt. We met Roxy in Ben Lomand and knew right away, she was the one. And she was, to be sure. She became our therapy dog. Life was tough at that time too with other difficult family situations and we all needed dog love. Roxy had it (has it) in abundance and is such a good dog.

Roxy was with Doug and I as we sat with his mom as she died of lymphoma. She was a warm spot in the room. She sat quietly, a sweet presence for anyone to pet. She also gave us a chance to leave when we needed so that we could walk her. Doug's mom, Renee also liked that Roxy was there. She has helped us through a lot of hard situations already in the short time she has lived with us. She has been our great friend. I know I need her to help me through this too.

There is nothing like that fast wiggling body that is energized by love for you and the warm wet tongue kisses on the face and the deep brown eyes that just want you to love back. Roxy is very important in this story and I am so glad she is here sleeping in the other room.

It Is All A Mental Game

This entry's first photo............ Anna, in a silly familialy famous pose, tells it all. When you have to enter into a box, close the door and blow into a machine when it is hard to breath in the first place and be stabbed and poked, the best thing to do is, find attitude........... and then eat Chinese food afterward.....

Things went so much better today than Anna feared. There were a couple of things that gave her mounting anxiety in anticipation that panned out to be just fine. It was the mountain is made out of a mole hill analogy. I am sure we will all meet up with this more than once in this experience. It is expectations and anticipation of something negative or scary that makes things seem to be worse than or bigger than they really turn out to be. As Anna said today, "I can see that this is really a mental game." Yes, as Everything is, don't you think?

It is all a mental game. It is how you look at it. Sometimes we need a little humor or seeing things as a bit absurd to lift us up a bit. In between appointments and procedures today we took a walk, or I walked, she was pushed on wheels to the Cantor Museum. The museum is a short walking distance from the hospital on Stanford campus. It is a good place to escape from the hospital. We have made this trek more than once. But, you see, everything is a metaphor for our lives now, so in a sense, we can never get away from it all.

We entered the sculpture garden in front of the museum and traveled up the ramp. The museum just closed so we stopped to gaze on the landscape and Rodin's famous sculptures. "Oh, my gosh, do you see what I see?" This famous garden display transformed before my eyes into, Rodin's Transplant Donor Tribute Garden! What a trip!

Pieces of bodies on display, in full view and honored for their parts, not the whole. Heads gone, arms gone, whole bodies gone. Where did they go? Were they donated to worthy souls needing them to continue to live and breathe on this earth? Did Rodin have a vision for transplant, a future medical miracle? Was he prophetic? The next time you see a Rodin, you may see it in a new light, the glory of body parts, the miracle of transplant..........

As you can see the day offered a grin or two for us. Welcome I must say at this time of intense-ness. And then, as I said earlier, Chinese Food, we went for PF Changs... and the Katsura tree flowers were in full bloom, smelling so well." (referenced from my first blog post entry, go to: Miracle On Order) Oh, I do love this image, this is how our day two of evaluation testing ended. Smelling the Katsura tree flowers is cryptic I know but means, we had another fortunate fortune. This time it was found in Anna's Chinese fortune cookie after dinner.

"Long life with the blessings of family and friends is yours."

As I told her, you chose that cookie, it could have been mine, but no, it was yours. And we smiled. This special fortune is now folded and safe in Anna's wallet.

And for me, "You will be singled out for a special promotion within the month." So does that mean that I will be pestered by solicitor phone calls? Or, is the special promotion an addition to my title, no longer CF Mom but a promotion to be CF Mom/Transplant Mom? Wish it was so easy.