Rather Be Fish'n

Day 65 or is it 66 (?), awaiting the call for Anna's double lung transplant.

Hey, yes we wait and wait and wait. Yesterday we discussed this situation. Things could be worse. We do go a bit ga ga ga crazy from time to time. I do get impatient and want it now like a little child wants her toy. But, we do have fun too. We are making the most of this. We can do this for a couple of fortunate reasons. One, the medical center is so close that we do not have to do yucky travel whenever Anna has an appointment or blood draw. Yesterday we had a lovely brunch at Barone's in Menlo Park and then dropped by the lab for a blood draw, civilized, I must say.

Another reason is that Anna has stayed so very stable, as we have repeated over and over. This can not be emphasized enough. Even though she is now at transplant level after a regular decline, she is keeping her base line. This helps so much. I am not terrified every time I see her with slips here and there. We are used to where she is now. Strange how you get used to these things. What is abnormal becomes normal pretty quickly.

Another reason is that we have the luxury to be and take our time and take care of ourselves because we have so much support. Behind the scenes of our lives are our honeys who take care of the nitty gritty that we can not so that we can do what we do.

Another reason is that we have Sara, the wonderful. She keeps us loved. Sara is such a great friend to Anna and wonderful daughter to me. She helps, is inspired by this process and is there when ever we need her.

Another reason is that we like each other. Imagine that. Mom and daughter have too much fun together. Are we ever cross with each other? Only on occasion do we do a little grumble but mostly we just fit like a glove together. We are committed to making this work. This is the project of our lives. That has been so for such a long time and we are such good friends. There is so much we enjoy together. It used to be thrift shopping and fishing and now it is eating and watching "quality" TV. The activity has had to change because of the situation but we are together, having fun when ever we can, enjoying each other so long as all is calm while we wait for the call............. that is how it is.

We so hope it stays this way. We do not want another stint in the hospital for a long CF visit before transplant. That is what we are trying to avoid because you know, that is not really fun. We want to enjoy this moment of calm, get the most of the day and get on with it. There is my impatience again. Well, I guess I should not give that up because it is the push, the impetus to move through this, to get to the other side. Impatience has its place. It stays with me because I want so much for for my daughter and me to get on with other parts of our lives. We want to go fishing! We miss fishing! Come on lungs! Time to go fishing! (don't worry it is catch and release.)

Writing and You Are Helping Me

Day 65, awaiting the call for Anna's double lung transplant.

Keep writing. Keep writing. It fills the space with my living while I am waiting. It fills the space with my writing while I am living. Ho Hummmm, impatience is arising. I know it can be contagious. Maybe I can work it out on the page so that its viral arms do not grab anyone near me into its neurotic hold. It is a time of "let's get on with it already....."

Last night, or rather early this morning and I do believe at this minute, as I write, there is a double lung transplant happening in the OR at Stanford. We do have the inside scoop since Sara's job includes calling the OR multiple times per day asking, "this is the CF Laboratory, are there any lung transplants?" The nurse in the OR will say no or yes. Last night she said, yes. Some lucky someone had the perfect match to end their waiting. Sara is surely up now and at least on her way to Stanford to retrieve the old lungs for the lab. She was so excited. She loves her job. This is a good test for her if she really wants to be a doctor. I think she does more than ever.

As Sara said, this breaks the pattern. For the last few months there have only been two transplants per month. This now makes three for September. Good. Maybe the tide is turning and there will be more done. We are certainly hoping for October for Anna. Early on when we all made our "predictions" Sara was the one to say, October 3. That is coming up. Maybe, maybe. Even though I am getting antsy I still feel all the good thoughts, positive prayers, wonderful support. I just want to get this done. It is the control in me. It is the mom in me. It is the me in me.

Breathe, let go. I have been trying to have a regular practice of body movement when I get up in the morning. If I let myself move as in dance or as in tribal shaking and with calisthenic stretches all combined into one I seem to do better. It loosens things up. I feel stuck sometimes. My body hurts and wants to break out of this holding pattern. It is like I have been in a holding pattern for so many years with this disease. Will the new lungs change this? I wonder. I wonder if I will indeed feel freer. I wonder if the stiffness in the muscles and the pains from down deep will open and release. I am looking forward to see, to experience. Ready to get on with it........

Movement and writing. These are my therapies. I do the first alone and the second with you as a witness. Perhaps one day we will move together in dance and celebration that this is complete and successful. I look forward to that day and will continue to use my trusty computer to help me process and share this amazing experience and the coming to fruition of a miracle on order. Thank you again for traveling with me.

And now, a group project: fill your mind and heart with this image, now pray, contemplate, wish, hope, think positive thoughts, what ever you do................ let's make it happen! Help me with my impatience...........

I Remember That Feeling

Day 64, awaiting the call for Anna's double lung transplant.


Twenty minutes on, twenty minutes off goes the ice, makes a lazy and busy day. One more day to laze around with ice on the cheek. Why not, the whole last few months have been about recovery from surgery and waiting for surgery. Anna stays strong and I keep going under the knife. Hope it is her turn soon and my turn ends.

As I was being stitched up yesterday I realized that I was in a familiar situation. The pulling and tugging of stitches on my face was like a deja vu. The images of being two years old entered my mind. I was playing "doctor" with my brothers upstairs. Big brother, the boss, told me, the little sister, to fill some glass bottles with water for the patient. I took a small box of bottles into the upstairs bathroom to discover for some reason that the sink was not working or I could not reach, I can not remember. So, the dutiful sister decided to take the task downstairs. I tripped. I crashed at the bottom of the staircase on a heater grate with broken bottles. In my mind I can still hear the wood kitchen chairs screeching across the floor as Mom and Dad ran to find me broken. My right upper lip was split up to my nose with blood gushing forth. It must have been quite a scene. I was rushed to the ER. I have never forgotten the image of the suturing and the scissors under my nose as I was stitched up. I have a life long scar that never forgot that day.

As Dr. Miller closed the incision from my skin cancer removal I told her this story. It is amazing how clear an image can stay with you for your whole life. The sounds, the feelings, are recorded for my retrieval whenever I wish. But, most of my life is a blur. It is those significant moments that are imprinted so clearly.

So, today we wait for another unforgettable experience, new lungs for Anna. That will be such a good memory. I know it will. We will think back to this time and all of the miraculous and serendipitous situations that supported us and pointed to a successful surgery. The day we are through with the recovery period and Anna is launched back into her life with full breath and energy to live the life of a 29 year old mature and wonderful woman will be such a happy day. We will see that this is all so worth it. So, we savor today knowing tomorrow will be another day to savor as well. We are so ready.

Another Day In Surgery

Day 63, awaiting the call for Anna's double lung transplant.

Here I am again, in the surgical waiting room, not for Anna, but for me! My knee is still healing but now I must deal with this. My dermatology appointment weeks ago revealed a basal cell carcinoma on my face on the right side of my cheek near my nose. I have had this appointment for a while. Of course I told the surgeon about Anna and the possibility of a transplant call prior to or in the middle of this surgery. She reassured me that if the call should come in the middle of this procedure they could put on a band aid, and send me on my way. If all was not yet complete it could be completed another day, no problem.

The procedure started with the stinging poke of the anthesetic being shot into my cheek. Not too bad. It felt some like being at the dentist. There is a very familiar sense of numbness. After the injection the nurse prepared my face with applying a cleansing wash. I was instructed not to touch my face as to contaminate its cleanliness. You know what happens when you are told that, all you want to do is touch your face. I resisted. Then a tickle began to arise. It was like my cheek and nose were visited by a glass of ginger ale with its refreshing bubbles popping on my face. Oh boy! Do I say something like, "could you please wipe my nose again nurse?" No, I decided to Be With It. My mind moved closer to the sensation. Tiny bubbles effervescent on my skin urging me to touch. I did not touch but rather investigated those bubbles. How interesting they felt. As I moved closer it was less irritating, again proving to me that when you resist you have issues, when you bring the trouble closer, the suffering tends to subside. I made it through the bubble tingling.

Dr. Miller covered my face with a green surgical towel with a round hole in the center for my nose and mouth. It covered my eyes so that the bright light of the medical lamp did not blind me. All was ready. I was told I would feel a pressure and if I should feel pain to let her know. The pressure I did feel. The scalpel was doing its work. Then, the cell phone! The cell phone rang in my pocket. "Sorry, I have to answer this one. It might be important." Dr. Miller moved the towel from my left side so that I could place the call on my ear. "Hello? Sara? I am in my surgery now. Thought you might have been Anna so I had to answer. Can't talk. Bye." Whew, thought that really could have been Anna. The whole family knew where I was including Sara. At least I thought so. Turns out she forgot. There always has to be some kind of silly drama.

I am sitting here waiting for lab results about what was removed from my face. After the little growth is removed a thin layer of cells is sculpted out to be tested for other cancer cells. If more are found then I am asked to return to the surgical room for another round of cutting. I am to wait here again until the next results are returned from the lab. This is called a Moas surgery. They say this can last all day going back and forth between the surgical table and the waiting room. We will see if it really takes that long. I am here with my lunch, P B and J, the computer, my new nifty ipod and a book.



A little digression on P B and J. I am very aware that this concoction is vital to the survival of the human race. At least this is what I was taught by my mother and father. When in doubt, peanut butter. A million peanut butter on toast sandwiches must have been prepared in my parent's home. Food was good, fresh and plentiful in my family of origin but so was the peanut butter. Crumbs of toast and smears of sticky peanut butter on the knife in the sink was always a part of the decor. It sticks to your ribs as Dad would say. It is comfort food for me. If I need a quick lunch to take P B and J goes with me. I am looking at the clock, only 9:50 AM. I still have two hours before I can partake in my delicious lunch with all its familiar tastes and associated memories. I will count down the minutes and not let myself indulge too early. This day must pass in an orderly manner after all, I am a surgical patient today. (yeah, right, compare this wimpy surgery to what Anna is about to do......) As I said to Dr. Miller while she finished the first part of the surgery, "there is no wimping out to anything when you have a daughter about to have her lungs removed and replaced." She replied, "It does give perspective." Yes it does.

He Has The Vibe

Day 59, awaiting the call for Anna's double lung transplant.

I thought today would have been my last physical therapy appointment for my knee. As it turned out we decided to go two more weeks. Having the appointments helps me to stay on track doing my exercises. My knee is so much better but has not yet recovered with all of the strength that it needs. And of course having this to think about has helped me with the other situation, the waiting.

Today was also a pre-transplant appointment at Stanford. When we arrived we saw old friends from our CF community. So good to see them after so many years but one of them was there as he was being evaluated for transplant. We hope that he is on the list soon.

We were told at the outset that one of the transplant physicians as not able to be at the clinic as he was ill. This made an especially long visit with a lot of waiting, but we are used to that experience. Even so, we want to express our approval! We were so glad to see sanity as opposed to the inconsideration of what we had heard recently on the radio about health care workers going to work no matter if they are sick or not. Yay, our center is thinking of its patients. That makes waiting in the waiting room so much more OK as this was so much better than seeing a "sick" doctor.

Recently Anna requested to meet the surgical team or at least a representative at her next visit. She was promised that one of the surgeons would meet her at the clinic today. Among the many providers, nurses, therapists, researchers, etc that she saw there was also a surgeon and his fellow to see Anna too. A very good discussion was engaged about the surgery, what happens, how long it takes and what happens if something goes wrong. Anna was able to ask all the questions she wanted. The regular questions opened up to the wild fantasy questions of, what if,and these are my greatest fears questions.

Anna first asked if there was an earthquake, what would happen? Answer: unless it is over 8.5 or 9 then all would be fine. Question 2: If there was a "shooter with a gun" who shot the surgeon what would happen? (I am not kidding) Answer: She was told that in that case the shooter probably would have to be someone who is a family member like, her mom, (he looked over at me with a questioning eye) so it most likely would not happen. Question 3: What if the lungs are out and the new lungs didn't arrive because of an accident? Answer: This has happened and was highly publicized a few years ago in Michigan. The lung recipient stayed alive on the heart-lung machine with another set of new lungs arriving a few days later to save the patient's life. Anna was relieved. These have been questions swirling in her mind. She thought each of these seemingly unlikely situations could cause her to not survive the surgery, that she would die right away, but no, that is most likely not so, very relieving. Isn't it incredible, you can have your lungs removed and live for about 1 week on the bi-pass machine. Amazing.

Then toward the end of this conversation we were startled. The surgeon revealed that today they denied an offer of lungs made for Anna. They turned them down because they were not good enough. It took our breath away. There is a blank space of memory after that news entered our minds. We could not hear anything else that he had to say for a while until we got our nerves restored. Anna could have been called today. We would never have known this if she had not gone to clinic. It was amazing that he revealed this info. Wow, that made it so real. It also gave us restored hope. Waiting is very hard and you do not know how long it can be. Now we really know it can be so soon and just as we are simply going about our day. There is such an unreal part to living this drama. Today this information made it more real.

During the clinic visit another new team member introduced himself. During the conversation he said that he heard that Anna was a "peach". How nice. She is considered a "peach". I agree.

Next we saw Dr. Weil. Yes, he confirmed, there has been a lack of donor organs this summer across the country. He said that it seems to be changing now. He admitted the near call for Anna today and that her name has been discussed. He looked directly at Anna and said, "Be ready." He believes it can happen soon, October sounds likely to him. But, how can he know? The thing is that this physician feels vibes too. He is feeling the vibe. More organs are starting to be donated and the climate is changing. Let's hope so.

The realm that everyone really wants to go to and share about is the vibe realm. It is more fun there. Talking stats is interesting to a point but, when you are feeling the vibe, it is tantalizing, When your smart doctor goes there it makes you perk up and listen. He must know, this is his work. I guess, I hope. He is feeling the vibe........... the moon is full............

Mom

For my mom's 80th birthday she treated Sue and I to a cruise in Alaska.
That was her way, to always give more to us than we could ever give back.
That was Mom.

Day 58, awaiting the call for Anna's double lung transplant.

It is the morning after my birthday. Yesterday Anna said, "Mom, you have been reminding me that it is your birthday all day!" I took this mantle and played with it, exagerating the behavior reminding her even more. I guess I was doing that for me. It was MY birthday. It was the day MY life began 58 years ago. Here I am. This part of my life is so much about the struggle for my child's life. I have been in this struggle for 29 years. That is a long time to have this focus. But, I also know that has not been my only focus or identity in my adult life. There have been many, many other things that I have done, experienced, and witnessed that have been greatly fulfilling and joyful. I have been so fortunate. This is MY birthday though and I needed to feel that it was MY day and I think yesterday I was missing something. That was why I kept reminding myself of the day.

What I really wanted was to talk to my Mom, to feel her hug.

"Mom, we are here still. Mom, we are fighting for Anna's life and we are doing a pretty good job. I know how much you loved Anna. I know how much you "got it". You had so much pain about our pain. You wanted to take it away from me. I could never let you do that because it was mine, all mine. It is part of my story. But, your desire to rid me of it. Your wish that we could have no more disease in our lives, that we could be free from this burden was your mother love for me. I miss that, Mom. I miss your compassion and your generous gifts, especially at birthdays. I always had a special present to open from you. The last year you were alive I know that Greg and I did not get birthday gifts from you because you felt so ill. We understood of course, but you trained us to expect that yearly acknowledgment that our mom knew us in a special way. I know that Sue and Mike miss this about you too. I know we all wish we could forever hold on to that mother love that you gave to each of us in your warm and wonderful way. What would that birthday present have been this year from you? Would we have gone to lunch in Menlo Park at Angelo Mio's or in Palo Alto at the Cheesecake Factory? I would have chosen those places because you loved them so. They reminded you of a part of your past that was filled with good and grounded memories. It was that San Francisco part of you that feels so deeply like one of my roots. After lunch we may have gone on a stroll up the street and into a few shops. I would admire something and you would buy it for me because you loved me so much. Oh, Mom, I miss that. I feel the tug in my heart that wishes you could be here. I am feeling in need of that special love and touch into my root life that you were. I will always remember those special times, those ways that you loved me."

So, now my birthday feels more complete. I needed to say it. I miss Mom. This is tough.

Happy Birthday To Me

Day 57, awaiting the call for Anna's double lung transplant.

Today was my birthday............

Love is the clear sky in the middle of the clouds.

You are my clear sky.

And as clouds do, this too will pass

We will have a time together free of obstacles................
What a gift that will be!

Walking In Step

Day 56, awaiting the call for Anna's double lung transplant.

Today was another visit to Stanford. Anna needed another pulmonary function test, blood gas value and 6 minute walk test. All is well. She is stable. This is good.



We do not know yet if there were any values that may affect her LAS (listing allocation score). We will be back to Stanford on Thursday for another pre transplant clinic visit. Her Dr. will go over the new scores and reveal any changes then.

Meanwhile, Anna is doing well and her heart and mind is in such a good place. Hope you read her last blog post. It was great and told of her ability to accept her life. We are so proud of her.

People keep saying they are feeling the vibe, the transplant is not far away. Remember that I just wrote about this and the diversions and the mind games we play to get us by. We know it is that everyone is feeling hopeful and that they are pulling for her. We need this support. It helps so much. We do know that there is a game to this but really, so what, it helps everyone.

Forget for a minute about my recent moralizing about the need to be so Zen and in the moment and lets have a little fun.... It can help you too. Anna now has decided that a great day for something wonderful to happen like a transplant would be 10-10-10. It is coming up. What do you think? We spent a little time today during treatment to put this date to song. See what you can do with it.

It goes like this ten ten Ten, ten ten Ten, ten, ten, ten, ten ,ten, ten, ten ten Ten...... now sing this over and over............
(The capitalized Ten is of a lower octave, accented and the note is carried longer than the first two tens)

Can you do it? What tune can you devise? Bet you will be singing it all day.........

It is What We Really Know

Day 55, awaiting the call for Anna'a double lung transplant.

So many stories have danced through my mind, they have presented twirls and leaps, bows and curtsies, hopes and dreams. I want the performance to never end with its practiced pointed toes, pink tutu and its perfect uplift flight with the wings of a dragonfly. The magical ballet of my mind has given hopeful story and form to this experience. And in some ways has disguised the stage with its creative set director providing much needed diversions.

As time is passing it can get more difficult to hang on to the threads of the tutu spun from gossamer wings. We think we can make it continue by setting the stage with the introduction of the next act. "I feel it in my gut. It is going to happen today! I know it." We wrap our arms around any sense of knowing, any sense of the mystical element that will give us a glimpse of the unknown. And when we realize, that that knowing was just our hoping, our creation of dancing ballerinas for our diversion and pleasure, we are humbled.

What is true is that it is morning, 6:37AM. The sun is rising. I can see it across the street beyond the hills brightening the sky. That I know. The grapes are ripening in the vineyard. The sweetness of their juice danced on my tongue yesterday. This I know too. At the same time, I am wishing for something to happen in the timing that I want. It is something that has really nothing to do with me. I have nothing to with it. It will happen and unfold in its own timing unknown to me. I must stop this play of thoughts that seeks to know this mystery for my comfort. I must delve even deeper into what I know, the sunrise, the grapes, the dragonfly on the wall, the rich cup of coffee sitting next to me. This is where comfort must come from. The silly games, the wishful thinking, the stories of when, only divert they do not deepen. The temporaryness of their companionship sometimes leaves me with abandonment. I forget the sense of humor that is needed.

It is another lesson in being present, of humbling our crazy minds. Each of us in this family need this reminder. Each of us must be warned about lifting the skirt of the curtain before the curtain call. Every time we do this we may be missing something that is right before us. It is in the waiting moments where we find the comfort shawl. Our true knowings will not be taken from our shoulders when our predictions are not fullfilled. When we feel it in our gut it is truly the taste of a mother's hunger for her daughter's savior surgery; or the thrill of the promise for a sister to see her sister breathe and have a truly new day; or the poise of protection that a father feels when his family is in danger; or the real hope of healing and new lungs for Anna to hold in her heart. This all is to be savored and known with intimacy. It is this real experience and only this that does not fool us. This is where we can find the comfort that will last forever.

And yet, I know we will continue to divert and make up stories and predictions to make time go by. This is what we do. But, I hope that from time to time when it all gets a little over the top, we do not forget our sense of humor and we remind each other to look out the window at the sunset, reach out and touch each other, really feel our gut experience and taste something delicious to bring our feet on the ground that we know. This is what humility does. It brings us back to what is real.

Even those things that are real,
Those things that right in front of us
Are so very, very Magical
Isn't this life incredible?

The Shirts As Story Tellers

Day 53, awaiting the call for Anna's double lung transplant.

Today I wore my Anna Banana's Bunch shirt out and about. I took about 30 packages filled with your Tshirts to the post office to mail off. There was no line, did you hear me, there was NO line! Yay! Patti, the name of the post office worker who served me, noticed the shirt and the many packages, thinking I had a business. "No", I informed her. "I have a daughter waiting on the transplant list for lungs. These are Tshirts like the one that I am wearing being sent to family and friends who are supporters. This is a project that has helped to lift her spirits."

"Oh", she said. "Does she need a kidney?" I went on to explain that she had CF and she is 29 and her lungs just no longer work. We talked a bit about the weird and difficult situation of waiting for organs because of what that means to the donor. I did find that uncomfortable to discuss with a stranger. You hope that you say the right thing and do not offend while still being honest.

As our conversation progressed I learned why she asked about a kidney. Her sister died of kidney failure at the age of 52. She has two other sisters that are on dialysis. The cause of the kidney disease was diabetes. All four of these sisters have suffered with diabetes for many years including Patti. Their mother died from diabetes too. She told me this with a lot of sadness. I so wanted to find some clever way to leave a bit of wisdom or to cheer her up, but it was hard to think of the right words. I just kept on listening. She continued to say that she had such a hard time managing her diabetes and was so worried it would get her too. Patti is a very attractive and kind person. I felt very sad for her.

After our chore of entering in the zip codes, stamping on First Class in red on the front of each package and completing the transaction, she wished my daughter well. I wished her well too. We never know the suffering or the story behind the exterior of anyone that we meet in the world. So many have health related issues to deal with. These human bodies are far from being without imperfections and reasons to suffer. I hope that my listening helped Patti some.

There are also very healthy people in the world. It is very shocking for some who have had the great good fortune to have good health most of their lives to learn of people they care about who are ill. A friend and reader of my blog told me that she recently heard from a friend of hers about someone who was just diagnosed with cancer. She was shocked that this disease could befall someone who was doing everything right. It happens that way sometimes. You eat well, you have a positive attitude, you exercise and then............. we all know people that this has happened to. My friend explained that life is not fair. That is just the way it is. She shared about Anna and living with this disease her entire life and now having the chance to have a new life where she can finally breathe with healthy lungs. This helped and inspired her and now there is another supportive "Buncher" out there sending prayers and positive thoughts to Anna.

The shirt gave me a way to get to know someone. I would never have known the postal worker as I do now. I will be sure to be extra kind to her whenever I go there and ask how she is doing. Anna's story gave someone a way to lift herself and reach out to another through my friend. If you share your story or are curious about someone else's story just think of what you can learn and the friends that you can make. If you have a shirt, wear it. Tell about Anna's story and educate about organ donation and the importance of discussing these things with your family. Or use it as a way to tell your own story. I am sure you will be able to touch another if only by them listening to you and then in turn you listening to them. I think that is what we all need more of, someone to listen, and to fine tune our own ability to listen to others.

What you wear
May reveal
Who you are

PSA, Right From The Horse's Mouth

Day 51, awaiting the call for Anna's double lung transplant.

Today, driving in the car, listening to Ronn Owens on KGO. Anna and I both do this, listen to radio. She mainly listens to KGO and I go back and forth between KGO and NPR. We got this gene from my mom, Grammie. I was raised with the radio on. At that time it was Owen Span. My mom loved him. He was a part of my life for many years. She stopped listening to KGO when Owen Span left and Ronn Owens took over. It was never the same for mom. But, I kept listening and Ronn Owens was visiting in my kitchen for many years as the children grew up. When you are with children all day every day you need some adult stimulation and conversation, and talk radio is pretty good at giving a lift to the day for stay at home moms. One day Anna realized that it was not so uncool to listen, in fact it was interesting, imagine that. Then she realized that she was so much like her mom, like I was like my mom. We both enjoy the radio together now.

Anyway, with KGO on, the discussion was about should you go to work if you are sick? What a ridiculous thing to have to even talk about. How can people think that it is OK to go to public service jobs when they are ill? Many people called in even a Dr. and ER nurse saying they go to work sick. They think they are indispensable. I could not call in as we were driving and had a destination but I wish I could. I would have said,

"I am amazed that people who deal with the public think it is OK to go to work infected with a virus. This is how epidemics get started. This also shows no understanding or compassion for the many people in the community who have compromised immune systems due to chemo therapy or other treatments and lung conditions such as COPD or cystic fibrosis. Does anyone consider those that can not handle a simple virus like the healthy? To many in our community a virus may cause a very serious illness, hospitalization and even death. No one is considering that. When my daughter who has cystic fibrosis is in the public she is constantly scanning for a sniffle or cough as tell tale signs that a virus may be lurking. This is terrifying for her and will mean the hospital if she contracts even a simple virus. Not only the inconsideration of the chronically ill, but also the lack of consideration of ourselves is troubling. Why can we not take a day or two when we are not feeling well. Why has this society not allowed us to nurture ourselves when we are not well. A day or two on the couch, in fact three days on the couch is the best medicine for all of us. It is thought that a virus is most contagious for the first three days. Can't we take care of ourselves as well as consider the concerns of those that struggle to be able to go out into public and need to feel safe so that they can go to stores and buy goods?" Wish I could have called in. You got to hear my rant instead.

Later we decided to do a preventative measure to get it out of the way. We planned to do this one day, but we had not planned it today. We had our flu shot. We had the time and we were going to Safeway. If you get your flu shot there you get a 10% off coupon for your next order of groceries. After the troubling discussion about all of the neurotic people who can not stay home when they are sick because work is so important, we decided we better get it done sooner than later. If the call comes tonight or tomorrow it would be a while until we got it done. Hey rest of the family, it is time for your flu shot too.............

Are you planning on a flu shot this year? It is a good idea. And since I am on this, do you wash your hands as soon as you come home from the store? It is a good idea too. Wash your hands often, it will help to prevent the spread of viruses. Who wants a stupid cold anyway? And next time you consider going out with that drippy nose and hacking cough, please reconsider. You can handle that and you will recover but you may unknowingly pass it on to another who will not have the same reserve and will greatly suffer.

Enough, this is my Public Service Announcement right from the horse's mouth as they say, while we begin to end the summer months and enter into Fall and the beginning of the cold and flu season. Hope you stay well...........

They Arrived! The Tshirts That Is.....

Day 51, awaiting the call for Anna's double lung transplant.

Waiting again all day, but this time for the UPS truck to arrive. Two boxes at the door, one with short sleeves, one with long and both with small, medium and large. The Tshirts arrived!

Anxiety yesterday was about whether the shirts would be there on time and whether they were OK. Would the sizing be right and would they look good? They arrived on the guaranteed date and the shirts look great, at least we think so. So, really, there was no need for the anxiety, it was all made up gobble dee goop in the brain, as most anxiety is anyway.

We also play games with the timing of the transplant to make our waiting have sense and rhythm. So, the transplant can not come until the Tshirts get here. Or, now that the T shirts are here, the transplant can not come until they are all mailed out. We try to make up ways that we have some control on this process. So long as we do not think too seriously about this and know it is our own mind game we are OK. When we start believing that that is true then we know we are in trouble. But for now, making up rhyme and reason is a comfort.

It appears with the delivery of the shirts that we are playing a team sport. We have a team and we have a goal to win. Wear the shirt and you are on the team! (We also know that there are many others that are shirtless and are on the team. Do not worry, you are not forgotten.)

Does this seem corny? Yeah, a little, and perhaps to some, a lot. But, you know what? I do not care! I love it. The Tshirts are great and fun. If we can boost our spirits and keep ourselves going knowing that over 100 friends and family are willing to have one of our team shirts to keep us in their thoughts then yoooo hoooo, that is so great.

So, soon the shirts will be sent. Now, all of you that ordered one can do the waiting game and watch for the mailman every day until they arrive. We know that you are excited and can not wait.........

When You Have A Goat...

Day 48, awaiting the call for Anna's double lung transplant.

This weekend I finally got to work in the garden. The brussel sprouts, cauliflower and broccoli were planted. Doug laid the soaker hose and the drip system was turned on. Oh boy, soon a stream of water poured out the space inbetween the the boards of the raised bed. A leak, a major leak interrupted our Sunday flow. Digging down deep under the gopher screen was a cracked pipe. I will not go into the fault and blame for this minor catastrophe. Slipping in between the thoughts of blame and cursing about this stupid situation and its inconvenience was a lesson I learned from my friend, Lama Gangha many years ago.

I do not remember the question I asked at the time, but I do remember the response. Translated from Tibetan, Lama Gangha offered me a lesson that continues to teach me. I see the truth of it every day. He said eloquently, "when you have goats, you have goat problems. When you have cows, you have cow problems." Then, he smiled. Now I know, this is the nature of the world. All things have problems that come with them. Today it was, "when you have a raised vegetable garden bed with a deep seated water system, you can have raised vegetable garden bed with a deep seated water system problems", and that we did.

Remember, goats have goat problems and cows have cow problems. Transplant has waiting and transplant waiting is the problem. It is solved by a call.............. we are awaiting.

A Visitor In The Land Called Waiting

Day 47, awaiting the call for Anna's double lung transplant.

Once upon a time in a Land called Waiting a visitor arrived. This warm and lovely woman bearing gifts, came from a country place. Her land was called Murphys. Life is abundant and time is slower in this Land of Murphys but not as slow as in the Land called Waiting.

Time in the country has a different beat. It is more in tune with the weather if cold or hot and if there are vegetables to sell and wine to drink. When it is time for the road side market, time offers a seat, friendship and delectables to taste. So, this woman understands the slowing of time, the being in the moment and taking advantage of all that is good in a smile, in a tomato and in a friendly gesture. Coming into our world of waiting was natural for her and she brought us warmth and her comfort with waiting.

In the Land called Waiting we are focused with a routine to be done. Each day is very much like the other with a new twist here and there. The lady from Murphys stepped right in, picking up a spoon in her hand, following a recipe sitting on the counter top and popping her creation into the waiting oven. Anna's favorite lasagna was born in this hearth place on Thursday. It smelled so good baking along side the cut up butternut squash seasoned with butter, nutmeg and cinnamon. Mmmm the aroma. And Ahhhhh, the friendship of laughter, the camaraderie of cooking, the slowing of time that allows for those moments together. A reminder of how it is in the Land of Murphys.

In the Land of Murphys there truly is a road side stand where these special people offer their wares. It is not a tale of fantasy and make believe. A table is set with fresh from the garden bounty, pickled peppers, jams and warm embraces. You can find it next to the Barn on Pennsylvania Gulch Road from time to time. It will be open tomorrow, I understand. And mind you the timing is also truly from time to time because in Murphys time is slower, time is different from our rush and rush and hustle and bustle of the bay area. I like it better that way. I like it better when I need to find the time to BE. You can do that there.

We can do that here too in our Land of Waiting. In our land, we have been forced by circumstance to slow down and the waiting and the focus makes us find ways to pass the time with a lightness when ever possible. We need that as some of the day can be less than light. We are so grateful to our friend from her wonderful land for joining us in ours.........

A Bump Up to 40.8136

Evening Waterfall at Hakone Garden

Day 44, awaiting the call for Anna's double lung transplant.

We were right. The seasons are changing. In the 60's today, grey skies and a little rain, strange year. September is a different month with a new energy. I always thought of September as the beginning of the year. Of course this was because of school but it has carried over. Yes, September is a great month for new beginnings and transplants.

There was a lung transplant last night at Stanford. It is a relief. This is only the 5th one since at least the beginning of June. We saw Dr. Weill today in CF clinic and he admitted he has never seen anything like this. There have been so few organs available this summer. Even so, the list of people needing organs keeps growing. He feels this is an aberration and there will be a cluster soon.

Most importantly, Anna will not be going into the hospital at this time! Yayyyyy! She woke up this morning feeling a lot better. We knew it would be up to the pulmonary function God to determine her destiny. If her numbers were down significantly then indeed she would go in. If they were stable then no reason to go. Amazing, it has been about 3 1/2 months since she last left the hospital and she still is holding her own and very stable. Anna is so stable that she gained 1% in her lung function. Now that is 1 measley % but it is something. When you are so used to a downward slide any thing a little different is very acceptable. All of our hard work is paying off. We are successfully keeping those lung buggers under control with rest, good food, lots of treatments, a hefty dose of laughter, and the employment of a slave for Anna, in other words, me. I am going to give myself some credit here. I know that Anna can not do all that needs to be done to make life happen on her own. I am so lucky to be able to help her and that we get along so well and have such a great time together. It is all worth it.

Another thing happened in clinic. Dr. Weill said they had reviewed the results of her O2 testing and felt that they wanted to report them differently. She needs 6 liters of O2 when she is walking but her listing says that she needs 3 at rest. They decided to correct that with reporting her O2 needs at 6 liters. This changes her number for consideration on the list from around 37 to 40.8136. This is higher than before and puts her up there with severity of disease making more of a pressing need for the lungs. This took a bit for Anna to process. It means that with the most common blood type, O, and a higher number there is more possibility of the call coming much sooner. September may be a great month for transplant as I already said.

So, no hospital for now and hopefully not until "the call", the call is very likely to come soon (whatever soon means), and we have to be ready. Are we ready? We think so, but the Tshirts come next Tuesday. We will see if the universe allows the Tshirts to be distributed first. That only seems to make sense. The Anna Banana Bunch must be ready too.

Life

Day 43, awaiting the call for Anna's double lung transplant.

While at a personal doctor's appointment in the last few weeks I saw this image on a magazine. I had to take a photo of it. It reminded me of something that happens in life when you are "out on a limb." It reminds me of believing in yourself and your actions and supporting yourself in extreme circumstances. It requires faith and trust, using all that you have, suspending the belief that you will fail or fall when things are difficult. I reminds me to be yourself and to not take your eye off the prize. There is a lot in this image. It also appears to be some kind of miraculous happening.

You know, like this image, life is so interesting. How we believe in and relate to ourselves, like the cat, and how we touch this web of personal interconnections can result in surprises. Every action we take or decision that we make may, in some way, significantly impact another. We usually do not know if we did something that was truly effecting another until time goes by and we see the result. When it does, it truly can make you wonder at how intricately we are connected. I just need to say that there are times when you are involved in things with out knowing and you do something innocent and then you look back and see that your action was significant. Makes you hmmmmmmmmmm..........

Meanwhile, as I leave that cryptic drama and step through the side curtain, I am back in Sunnyvale with Anna on the grand center stage. She has written on her blog that she is not feeling well and is tired. It does seem it may be time for a "tune up" at the hospital. Tomorrow is a CF clinic visit and she will discuss this with her doctor. Anna so wanted to get her lungs before she had to make another CF hospital stay. It doesn't look like that wish will be granted. It is important that she not let her strength dip too much, so IV antibiotics for three weeks is most likely in order.

Ho hum, not fun. She said that she needs the motivation and drive to want to do this. In past times before being on the list she was not working so hard everyday to stay well. She still had some wiggle room in her day, so to go in the hospital and work hard was OK. She knew that when she got out it was over and she could relax. That is not so now. She works hard everyday with her three treatments, etc. and being in the hospital will mean four treatments, plus the IVs, etc. It will be even harder work and when it is time to come home we will not be able to slack off. This is a marathon and we are going to finish it, but it is tiring and can at times feel grueling.

You can do it Anna. You have to do this to get to the prize. You so deserve to have new lungs one day. We must be patient. We must be willing to work hard. We must keep the big picture. It will happen, you must believe as the cat does...........

Ahhh, Salty Air

Here is a CBS news story about a new trend in CF. Everyone is going surfing! This idea must have come from the hypertonic saline therapy that CFers do. They aerosolize very salty saline into their lungs everyday to help get the mucus out. Being at the beach sounds like much more fun. If this was the trend when Anna was little you better bet we may have moved closer to the beach!

Click here and check out the video..........

News story about surfing and CF.

Recharging The Batteries

Day 41, awaiting the call for Anna's double lung transplant.

How do you recharge your batteries? Everybody needs a way to do this. If you have not yet figured it out then you are not living with balance. We need to be active and engaged, working hard for what we believe in or for the money that we need to live. We also need to find a way to let go and step back to "recharge". This has always been a value of mine.

When Anna was little, mothering was very hard work for me. It was my 9 to 5. Doug had his 9 to 5 which was actually the providing for the family, Silicon Valley grind of 8 to 8 for many, many days of his career. But my 9 to 5 was also close to 24 hours in caring for Anna for many days as well. It was hard work to give treatments everyday, raise a toddler, expect the 2, 3 or 4 year old to be acquiescent with pill taking and treatments and get up every night with a coughing child for many years. I needed recharging. Doug did too, he also was involved in caring for Anna after work, many times doing the evening treatment, but he was so wonderful to give me the chance to get away. He would take over the and care for Anna while I went away. It was special daddy/daughter bonding time. They needed this space without me to connect in ways that was unique for them. I needed change and quiet. I needed to not talk to anyone, to be able to have my own timing as to when I would get up, eat and fill my day with something just for me. Green Gulch was that place. I would go to this Marin county Zen Buddhist Farm and Retreat Center to bathe myself in quietness and picturesque beauty. The food was so wonderful, vegetarian, simple, and scrumptious.

I craved being at Green Gulch when my energies started waning, the grouch meter started to climb and I was just plain old tired. To this day I do not know how mothers with children with special needs or any mother for that matter does not need time away. I know I was not in the company of many others who would seize this time. Even though I would sing the praises of alone time and a few days without the regular routine, I could not convince some that I knew to do it. Perhaps it was because I had such a wonderful husband and the girls had such a wonderful daddy that I was able to do this. I can not imagine surviving those years without these life saving breaks at lease once or twice per year. I also think that the relationship between Doug and the girls grew during those times I was away. It was very important.

Doug and I would get away ourselves every anniversary and for many of those anniversaries we spent glorious March weekends in Carmel. My mom and dad and other babysitters would care for Anna and Sara so that we could get away once per year. It made such a difference in our relationship and in how we could "recharge" our batteries. Six years ago this weekend Doug and I rewarded ourselves and honored this part of our lives with purchasing a small country place in the Sierra foothills. It is a "recharge" center for us and the girls when they can take advantage of it. What a gift Murphys has been for us, marvelous.

We are in Murphys now and it has been 41 days of Anna being on the list. I felt that when she was finally on the list I would not allow myself to be as far away as Murphys from Stanford Hospital. It is actually about 3 hours away. I thought it would make me too anxious. Now that we are getting into the "waiting" and we realize that even though it may be any day now, we suspect it will still be a while, we have to pace ourselves and be realistic. Anna knows how much I love being in Murphys, in our little house in the country. She knows how it recharges me so she gave me permission and I gave myself permission to go for a day. If the call should come we will close up the house, jump in the car and go. We will get there in enough time. There will be hours before the surgery begins. I am feeling OK about this. I am not too nervous. I am so happy to be here, dinner outside, watching the bats and listening to the crickets........

Change Is Coming

Day 40, awaiting the call for Anna's double lung transplant.

I have spoken about listening. I have also written that there seems to be a recent shift in the energy around me and I am attributing it to the seasons changing. It is a feeling. Summer is when we are in full bloom, fully emerged with the power of the sun. The earth displays its fruits for the taking. Gardens are rich with bounty, trees are laden with fruit. People are out and about meeting, sharing, vacationing. I have been writing this summertime blog about very personal experiences in my life. Not only have I been sharing about the events leading up to Anna's transplant, but I have also offered deep inner musings. This has given me a way to connect to myself, my friends and family and a larger community.

The power of opening up and sharing all that I have has been so good for me. That is one of the rewards that comes from this creative experience of writing and sharing. This personal journey has also had another purpose, to educate about cystic fibrosis and what this disease is like to live with. I did not want to share this for sympathy but rather because CF is such a hidden disease in so many ways. When you do live with it and know its power you want others to understand what it is. Our family has experienced CF in its many facets. We know its destructive side, the side of chronic illness and loss. We also know its empowering side, the part that challenges and forces you to grow and learn. There is also the interpersonal side of the community of people with CF who need each other, understanding and camaraderie. The CF community is filled with some of the most wonderful people we have ever known.

I hope that with this blog and my willingness to be open, I have been able to enlighten readers as to what CF is. This will mean that when you meet someone else affected you will know more and can offer greater understanding. I also hope that by reading my, our, story you will connect on a larger scale to have more compassion for lung disease in general, and even larger than that, the lives of the chronically ill who struggle everyday. And of course, I hope that you are open to the miracle of transplant and the gift of organ donation.

Illness is a huge part of our human experience. In our society of preference for the young, healthy and beautiful, illness and disability is not easily embraced without a lot of aversion. No one wants illness for themselves or their loved ones but it is out there and the more we understand, the better we can cope. The less we fear it and accept it, the better off for everyone affected. Through sharing my personal thoughts about it all I hope you recognize that through assigning meaning, finding spiritual gifts and looking deeply into yourself, the disease, disability or hardship that has come into your life can be a force for growth rather than just destruction. At least that is what I have come to believe is possible.

As I said, the energy is changing. Fall is coming. It still is warm like summer but the autumn equinox is not far away, less than 20 days. During the Fall leaves turn color and are released to the ground. Life starts a path of dormancy leading to winter. People go inside and make soup and warm bread. I feel this pull to begin going inside, inside of my own personal space. This blog has been a tool for me to experience summer openness and now I sense that it is time to pull back. I am not sure yet what this means.

Drums

Day 39, awaiting the call for Anna's double lung transplant.

Listening for the winter sparrow brought me the sound of drums, Japanese and American Indian drums. At the last minute a call from Isa invited me to hear taiko and native American drumming in honor of the Smithsonian Institute's American Indian Museum in Washington DC presented by the Foundation for Hakoni Garden in Saratoga. What a combo!



The evening was perfect with a warm temperature and traditional Japanese surroundings. We were treated to the heart beat of the native drum and the lilting sounds of the native flute. Then we were awakened with the pounding and energized taiko drums that made our bodies move and shake to the rhythm. Such a deep penetrating sound into the bones, through the soles of the feet securing the connection to the ground and earth beneath.

Drumming is something I love. I have done a little of it. I never joined a drumming circle even though at one point I was part of a native American medicine circle. It was there that I had my own drum made. Recently drumming has been a therapeutic exercise of friendship with Peggy and Ron in Murphys. They have a fabulous kettle drum. Sometimes we beat and beat that drum sending its song into the valley. It feels so good. It opens you and energizes you. Such a powerful and ancient form of music connecting to that which is bigger.



Actually, Anna and I drum everyday on her back, front and sides. This rhythm is different, the rhythm is life giving, the rhythm is regular and the rhythm will end with transplant, truly what a relief that will be. Then, only the beat of the drum and not the sounds of hitting of my daughter's chest will fill my ears with that echoing rhythm. We are so ready for that day to come.

Listening For The Winter Sparrow

Day 38, awaiting the call for Anna's double lung transplant.

Waking up on yet another day "awaiting" I clicked on the file, "Fragments". This is a collection of poetry left behind by my mother. We found poems in baskets, in files and on notes stuck in books on shelves in her apartment. I was starving to know Mom better and devoured each hand written morsel with ravenous hunger. I spent hours copying them onto my wonderful MacBook. This collection of "Fragments", and her other journals of writing about time and thought, capture an inner mom that I can go to and still find tastes of.

October 1986 "We stumble along over the long road seeking to avoid the ruts and juts yearning for a path through a leafy glen that shields us from the false promise of spring from the heat and passion of summer, the cold winds of autumn and the winter freeze - yet on we go beloved, by a promise we wish to keep - winter sparrow sings along the way."

The wonderful wrap of warm mother arms in the morning with my coffee is the gift her words give to me. I am listening for the winter sparrow as he sings along the way. This is a journey of listening and listening deep.

The wonderful connection of close and dear family members who want to listen with us is such a treat at times. Family holds our history and knows some of the path we have traveled. They have listened before. And, we have listened to their steps upon a worn path too. Aunt Lenell, a great listener came to meet us today at Dinah's. She is such a sweet and caring one. Lenell is one year younger than Doug but she is his aunt. Her mother and my mother-in-law were pregnant together. Lenell in many ways is more like a sister to Doug. She is always kind and reaches out to Anna. It was great to spend time together, to listen together.

Even so, perhaps we have had enough of Dinah's. It is September now and that treat at poolside seems old and passe. The final push of summer heat is here, yet autumn is coming so we need a new place to land to listen for the winter sparrow brunch bird and what the next season will offer to us. The days are beginning to meld and look like each other. Change is needed.

Perhaps that is the stirring that Anna and I were feeling yesterday. It seemed that suddenly on September 1 the energy stopped. We took an assessment. OK, we may still have a long way to go so we need to shake things up a bit in order to not go stir crazy. Now, I understand it is the coming of a new season, the Fall that is begining to beckon to us. Not far away are the Autumn sounds of wind in the chimes, the new feeling in the air and the dimming of the sun's light. Ahh, now I see and hear with the listening ear and the gift of my mother's poem. We feel things changing. We will go with this. We will listen and find the changes in routine that we need.

Today is a special day for listening. Can you hear the Birthday song for Uncle Gary Modlin and Cousin Adam Topol? And tomorrow for Cousin Abby McCallum! Our hugs are sent to you......