Journal

Journal entry by Shahara Godfrey

Hi everyone,

 

It has been awhile since I have posted. Changes and challenges…life, you know. This is also my last journal entry.

 

As  I had mentioned in the last journal entry, the multiple myeloma is now in remission. I was surprised it happened so quickly. I was given the impression that treatment may be as long as a year. I am so grateful it happened sooner than later. Now there is a new phase: physical therapy.  I am using the pool as well as doing range of motion exercises. Maybe in a month or so, I will be exploring gentle yoga.

 

The body has been through so much and in such a short period of time. I am aware that healing continues and it is truly forever. Recently, I have been having conversations with the body. So many memories, so much suffering, so much pain…I am learning how to fall in love with her… And she is so amazingly patient.

 

How do I say thank you and show my gratitude to all of you that have been incredibly supportive and so kind? Sometimes language fails me…Please know that I carry all

the prayers, love, and well wishes with me always. The boundless heart breaks open all the time. She is such a profound teacher, awe inspiring and humbling.  Gratitude is with me even when I don’t feel deserving. Grace and mercy never leave my side.

 

I am sharing this poem because it is about when someone deeply listens to you.  So many people have done so for me and this is for all of you.

 

When Someone Deeply Listens

 

When someone deeply listens to you

it is like holding out a dented cup

you've had since childhood

and watching it fill up with

cold, fresh water.

When it balances on top of the brim,

you are understood.

When it overflows and touches your skin,

you are loved.

 

When someone deeply listens to you,

the room where you stay

starts a new life

and the place where you wrote

your first poem

begins to glow in your mind's eye.

It is as if gold has been discovered!

 

When someone deeply listens to you,

your bare feet are on the earth

and a beloved land that seemed distant

is now at home within you.   John Fox

 

Generosity, gratitude and eternal thanks giving carry me through most days.

 

May we live every single precious moment.

May life continue to surprise us.

May we be free from suffering and it causes and conditions.

 

 With palms together and remember to always love,

Shahara

 

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Journal entry by Shahara Godfrey

My dear family, friends, and beloved communities, 

 

Again I must apologize for not being as consistent as I would like to be with this Caring Bridge blog. I have good intentions but the follow through is slow. I have motivation because I can think about what I want to say and how
I want to say it…And then nothing comes out you know? I imagine that part of this unfolding process is the cancer itself...

 

On May 31, I was told the Myeloma has rescinded. The aggressive treatment of 3 weeks on (2 days of chemo
and 1 day of labs) have been successful. Such good news and paradoxically overwhelming. As I had mentioned before the multiple myeloma can settle in the large bones of the body (the skull, hips and spine) and soft tissue.
It has settled in three of the thoracic vertebrae and the damage is irreversible. Consequently, I have back pain.
The last week of treatment is this Friday (6/15) and I am finished. As many of us know each cancer has its own proclivities. The nature of this disease is to return.
The next phase is to create a maintenance plan that will support keeping the myeloma away and address the
ongoing back pain. The likelihood of continuing with the steroids is a real possibility as well as finding a
maintenance drug that does not have side effects that can cause severe reactions. The last drug caused
neuropathy and it took 6 months for it to finally leave the body. 

 

Ayya Khema has stated that, “Suffering is our best teacher because it  hangs out until we have learnt that
particular lesson. Only then does suffering let go. If we haven’t learnt our lesson, we can be quite sure that
the same lesson is going to come again, because life is nothing but an adult education class, if we don’t
pass any subjects, we just have to sit the examination again. Whatever lesson we have missed, we will get
it again.”

Although what she says is true, the repetitive lessons can take their toll. I wonder if there is room for
kindness, room for patience and room for a little tenderness because life has its own trajectory?

 

In any life, there are phases that everyone experiences from being an infant to old age. I know from the living
with Cancer,
there are definitely some different phases of living with a chronic life threatening illness as well. The before
phase, the during phase and the afterwards phase. I am now entering the post cancer phase (again). Who
am I now? How do I choose to live the rest of this life? In this moment? Right now? Tomorrow? I am not sure.

 

I think, actually I know, I am learning a deeper meaning of living with hope and despair, another version of
10,000 joys and 10,000 Sorrows. Balance, balance, and more balancing. I found this suggestion online for
a mindfulness practice for the week. My apology for not having the actual reference. I will continue to look
for it.

 

“With a spirit of wise attention you can honor the vast gifts of beauty on this earth alongside your measure of
sorrows. You will need some healing for your pains. But do not be overly loyal to your suffering. A peaceful
heart and a vast perspective can be yours as well. Look up at the stars. See the oak trees and the tender
evening light. Open your eyes and become a witness to the mystery of incarnation, with its 10,000 joys and
10,000  sorrows. Let your story move on. It is never too late. With beginners Mind start again. Take a big
breath. You are free to choose your spirit. Choose love. Dance".

 

Sometimes I don’t feel like dancing and sometimes I do.

 

I like reminder poems, this is one for us all.

 

More than the Morning

 

It’s more than the morning we must wake up to

The birds have been singing for hours in our dreams.

Let us not be too sleepy to remember the countless blessings

Waiting to unfold in a day remembered with Grace.

 

Let us not forget to love,

To smile, to breathe the simple truth

That all life’s precious configurations 

Are designed to guide us to our awakening.

 

What a paradox that we must sleep to dream

And awaken to fulfill our dreams.

What a paradox that we must die to full live,

Give to receive, and empty to fill up again.

 

Even our longing is a blessing,

For it carries the wind across the sea;

And stirs the ocean of the soul

Into the creative matrix of wonder  - Anodea Judith

 

Gratitude is with me even when i don’t feel deserving. Grace and mercy never leave my side.

 Generosity, gratitude and eternal thanks giving carry me through most days.

 

May we live every single precious moment.

May life continue to surprise us.

May we be free.

 

with palms together and remember to always love,
Shahara

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Journal entry by Shahara Godfrey

 

My dear family, friends and beloved community, I am a little slow with the Caring Bridge updates…bear with me, ok? -:)

 

Patience is more than waiting and hoping. Patience is taking the time to love what is difficult to love. Zenju Earthlyn Manuel

These past 2 weeks have felt like roller coaster rides with short rest pauses in between. And I don’t like roller coasters! Somehow patience with lots of kindness moments are required to put the thoughts in some kind of perspective. I get to watch my mind have its own ways of making sense (thank you very much!). I mostly have been sitting with self-doubt and the desire to act out but watching how I don’t…I have been wading (ok maybe drowning) with periods of feeling such deep despair and having unreckoned crying jags. If there was a honeymoon period, it is now officially over. Can I sit with myself when the feelings of terror and horrific despair plop down on both sides of me squeezing with a fanatical glee? Let me tell you it is not a pretty site. And then I remember, “oh yeah, this is only a moment”. They are just really long moments…

The practice of generosity and the tenderness of patience seem to be what is needed right now. Someone recently mentioned (and I am paraphrasing) that to be present is to  allow oneself to be vulnerable. It’s a courage act. So in this practice of generosity both the giver and the receiver get to explore/be with/ fight against/ accept/ and embrace patience as a necessary ingredient. Dr, King states, that “I have decided to stick with love. Hate is too great a burden to bear”. 

Thich Nhat has this amazing way of understanding Generosity. He goes on to say: Aware of the suffering caused by exploitation, social injustice, stealing and oppression, I am committed to cultivating loving kindness and learning ways to work for the well-being of people, animals, plants and minerals. I will practice generosity by sharing my time, energy and material resources with those who are in need. I am determined not to steal and not to possess anything that should belong to others. I will respect the property of others, but will try to prevent others from profiting from human suffering or the suffering of other beings.

It is a challenging bar to use as my guide but it such a worthy and honorable gauntlet. 

Living with a terminal illness takes on a whole new meaning. Experiencing patience is a generous act towards oneself and others. I choose to live a life worth living. The choices I make these days are reflected through acts of kindness and patience. When I interact with others, I get to be in community and have the opportunity to practice all the time. And this too is the practice of generosity.

I came across one of my favorite poems and wanted to share it with you all.

Epitaph

When I die
Give what's left of me away
To children
And old men that wait to die.

And if you need to cry,
Cry for your brother
Walking the street beside you.
And when you need me,
Put your arms
Around anyone
And give them
What you need to give to me.

I want to leave you something,
Something better
Than words
Or sounds.

Look for me
In the people I've known
Or loved,
And if you cannot give me away,
At least let me live on in your eyes
And not on your mind.

You can love me most
By letting
Hands touch hands,
By letting
Bodies touch bodies,
And by letting go
Of children
That need to be free.

Love doesn't die,
People do.
So, when all that's left of me
Is love,


Give me away.- Merrit Malloy

 

May we all choose love in the turbulent tender land mines of kindness.

May we hold ourselves and each other with such care.

May we be free.

 

With a deep bow of gratitude, Shahara

Journal entry by Shahara Godfrey

Hi everyone,

 

Thank you for your ongoing support. I appreciate the calls, visits, wonderful cards, prayers, drumming, smiles and laughter…keep them coming it works -:) Once this chemo cycle is complete, I hope to visit with folks more often in May and June.

 

Sometimes writing can be an easy task and sometimes it is unbearably hard.  When I have these moments of deep thoughts (sometimes morbid) about my back, the multiple myeloma and the physical reality of what it is…I tend to experience different variances of vulnerability. I wonder if there are different stages for that like the 5 stages of death and dying?

 

Lately, what I have noticed is that sometimes, just sometimes I don’t want to be in the present moment.  The concept “spiritual bypass” comes to mind. I don’t want to know how I feel in this moment, what the body is aware of right now…what I m thinking or paying attention to…can I just say I don’t care…at least in this moment? Having a complete and intentional avoidance experience (s) suits me fine…thank you very much.

 

I can only imagine that having moments of vulnerability  are par for the course for any person living with a life threatening illness…they come and they go. It’s when they are here and seem like they are never leaving that the meltdown and feelings of tenderness can leave a person feeling raw…like me. I make a distinction between having a pity party and feeling overwhelmed and helpless.  Sometimes language works well to describe these random moments of hell and sometimes they don’t.  One thing for sure I get to practice being kinder to myself and to those around me. Not that I succeed much, but it is always worth the effort.

 

Sharon Salzberg, has said, that, “doubt, in Buddhist teaching, is a very interesting quality because there are many ways in which doubt is highly prized. We need to question, we need to wonder, we need to investigate. We need to insist on seeing the truth for ourselves…There’s also a quality of doubt that is considered a hindrance. This is more like what we sometimes call “speculative doubt.” It’s doubt about our ca- pacity to learn. It’s a doubt that is a form of cynicism, where instead of div- ing deep into a process to let it speak to us so that we can understand it for ourselves, we step aside and are frozen and disdainful, which is often a kind of mask for fear…”

What am I afraid of? 

I am afraid of dying and my affairs will not be in order.

I am afraid that I will leave a whopping mess for my family to figure out about finances and my belongings.

I am afraid this iteration of the myeloma will kill me before I get to finish my endless tasks…creative or otherwise.

I am afraid that I will not see my daughter and grandchildren in 5 years watching them grow and flourish.

I am afraid I will not wake up in my right mind and not know who I am.

I am afraid the body is getting weaker and not stronger.

I am afraid that I have lost my capacity to care for others.

I am afraid I will wake up and not know my family.

I am afraid that I will die alone, lonely and scared.

I am afraid, afraid and very scared.

I am afraid that these thoughts and feeling will be with me always.

I am afraid that I forget there is joy in moments.

And then I remember there is mercy and grace and the fear goes away too.

When they are with me, the intensity / vulnerability of the moment feels insurmountable. And then I remember there is mercy and grace; those feelings goes away too.

Gratitude is what I practice and live with such beauty and such grace.

Until then with a deep bow of appreciation,

Shahara

Journal entry by Shahara Godfrey

Hi everyone,
I realize I haven't checked in for over a week...please forgive my slowness. Medical appointments, family visits, trying to multitask...you know life. 

The last time I shared, I was in the process of making an appointment with the neurologist. I did meet with him and he was very informative. We both agreed that surgery and radiation are not an option at this time. He confirmed that I have two vertebrae that are crushed and one that has very little disc material between the vertebrae. They are all located in the thoracic region. The intervention at this time is to get a back brace and receive physical therapy. I feel grateful and relieved. 

This past week, a dear friend (thanks Naima) visited and provided additional support for cooking, light housekeeping and going to the chemo appointments. I needed to realize how much these simple tasks with assistance make a HUGE difference. The combination of fatigue, limited daily activities, and rethinking what I can do realistically now continues to be a learning curve. This practice is so humbling.  I appreciate what I can do now and letting go of the expectations of wanting to do more...less is truly the best. I also have to remind myself that how I am now in this moment will not be how I will be in the next one.

Lately, I have been thinking about impermanence, practicing impermanence, and reflecting on how it manifest through me. One of the most challenging aspects of living with Cancer is grieving, letting go, mourning or whatever you name you want to give it. I have been thinking about how I walked in the world, the different roles I carried and being able to just do more. Now I live with doing less. Finding peace and acceptance within this reality is truly an ongoing process.  Sometimes I feel so accepting and other times, I go to a place of despair.

Accepting and moving forward can be an easy task when I am not attached to or invested in wanting situations, people, life circumstances, etc. to remain the same. Hello, it's not going to stay the way I want it to be. It never has and it never will. Thich Nhat Hahn wrote, "we have to nourish our insight into impermanence every day. If we do, we will live more deeply, suffer less, and enjoy life much more".  This is a constant reminder of change.  And how many times do I forget this? Not all the time, but lots of times. I am glad of the reminder.

Impermanence shows up in some interesting ways. For example , some of you may know I have been living with my sister. Having a home / sanctuary can provide of sense of rootedness, being grounded, and feeling stability. I am so grateful that during this intense period in my life, I had a place to get well. It has contributed so much to this healing journey. And now it is time to move. It is time to find a home. 

I am calling on dear friends and the wonderful beloved communities for assistance. I am looking for a 1 bedroom in a mother-in-law unit or a carriage house or in a duplex or a fourplex (there is lots of flexibility).  My preference is to live alone and I have no pets. I am casting a wide net for possible locations: Marin, Novato, Dublin, Sacramento, San Leandro, Hayward, Berkeley and Oakland. I can afford $1,000 a month, all utilities included with a full bath. Off street parking would be nice. I can move within the next 2 months or anytime after that...Just so you know I am on different senior housing wait lists in different counties. Whatever information is sent my way is greatly appreciated.

Zenju Earthyln Manuel has a written a wonderful book called Sanctuary: A Meditation on Home, Homelessness, and Belonging.  As I was reading it, I spent a lot of time reflecting on what does it mean to have a home, to seek refuge, and to understand other ways to hold experiences of homelessness. She validated a lot of my own thoughts and feelings of being alone versus loneliness and exploring it through the lens of belonging and change.  

 Thich Nhat Hahn  states, "the seemingly fixed and solid world you see around you actually is in a state of flux. Our senses may not be able to detect moment to moment change, but everything is always changing. When we fully appreciate this, we can fully appreciate our experiences without clinging to them. We can also learn to let go of old fears, disappointments, regrets. Nothing is real but this moment. Because nothing is permanent, everything is possible". 

I live with knowing liberation is possible.

May we all have sanctuary.
May we all have peace.
May we all have a place we call home.

 





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Journal entry by Shahara Godfrey

 

HI my dear beloved family, friends, and communities,


I hope is all is well in your life and with your family.

 

This is my daily practice. I wake up in the morning and say to myself, Thank you Spirit for waking me up in my right mind and then “I promise myself that I will enjoy every minute of the day that is given me to live.” Thich Nhat Hahn

 

I haven't been on for a week or so because I wanted to wait until I had the results from the CT scan. As many of you know X-rays can be helpful but to pick up fine details a CT scan is necessary.  For those of you who remember the early days of my recovery in 2016, if it wasn’t for my complaining about my stomach and having the CT scan, I would not be alive. One of the symptoms I have been experiencing is shortness of breath since February, it is a relief to finally find out what has been causing this challenging problem.

 

Myeloma tends to spread to 3 large bone areas in the body: the back, skull and hips. I have what is called a compound fracture due to the myeloma spreading in the bone marrow in my back, namely; the thoracic region in the spinal column. The good news it only has spread to 2 vertebrae : T- 3 and T-11. The plasma cytoma growth is a mass of plasma cells on the sternum and composed of soft tissue which is causing the shortness of breath because of the pressure. While the pain is more bearable it is not gone.

 

As I understand it, the myeloma has spread to 2 areas in the body: the soft tissue growth on the sternum and inside the bone marrow of 2 vertebrae in the spinal column. The good news is the cytoma is getting smaller due to the aggressive chemo treatment and I imagine (hopefully) it will be gone within another month or so.

 

Here is a picture of the spinal column. Since I am a visual person, it really helped when the oncologist pulled up this cool looking screen. All he did was touch it1 The screen would highlight the different areas he was discussing. He could make the images smaller and larger as well.

 

As you can see that between each bone section there is a small shelf which is the cartilage. It provides a cushion so that the bone is not rubbing against bone. I am told that when there is a pinched nerve it is extremely painful and surgery is highly recommended.  

 

So in my case the good news is that I have some cartilage and the not so good news is there is probably less than an inch or 2 of cartilage left and it is irreversible. The damage vertebrae which is in the thoracic region does not grow back.

 

The current focus of treatment is pain management of the symptoms. I am slowly moving out of the acute phase into a more stabilized form of treatment. The acute phase started in February when the body experienced too much damn pain. 

 

Once I saw the oncologist and received the news about the return of the myeloma, the intervention began immediately. It is focusing on two distinct areas: addressing the aggressive treatment of slowly bringing the cancer into remission and the control of the symptoms through the pain management.

 

There are 2 possible surgical interventions and both of them scared me. I know for sure after it was mentioned, I shut down…ya think?Both procedures require back surgery and then a slow recovery. I plan to meet with the neurosurgeon so I can have a better understanding of my options. Trust me on this, the likelihood of doing this intervention is pretty slim. For a few minutes I was sitting with such absolute terror and fear. I think of the quote by Audre Lorde in which she says, "When I dare to be powerful – to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.” This is such a healing balm!

 

The medical providers are suggesting that it will be a year of chemo treatment before I can sigh a breath of relief…who knows it could be or might be sooner?

 

Just so you know, I have closed the GO FUND ME campaign. I have exceeded the goal and
I am humbly grateful for the outpour of love and generosity. The appreciation I have is boundless. A deep, deep bow of gratitude. For those who still want to offer a donation, Paypal is another option or you can send something via email. Gift certificates to grocery stores are always welcome as well.

 

Sometimes when i sit with the sheer enormity of dying, I get in touch with the vicissitudes of living. Being in the the present moment is so healing and helps remind me of the gifts of impermanence.  I am reminded of Mary Oliver’s poem, When Death Comes. Here are some of my most favorite lines:

 

“When it’s over, I want to say: all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

When it is over, I don’t want to wonder

if I have made of my life something particular, and real.

…I don’t want to end up simply having visited this world.”   

 

May we all be brides to amazement 

May we all take the world in our arms

May we all be free from suffering and its cause and conditions

 

Until then with palms together and a deep bow, Shahara 

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Journal entry by Shahara Godfrey

Hi everyone,

Today the weather is so wonderful...the sun is shining, there was a recent rain and it is 81 or 82 degrees...simply beautiful. Sometimes I need to be reminded and other times reminders are there for me to notice that between hope and despair...there is joy or moments of joy.

Despair can be defined as suffering in whatever manifestation it appears and I 'd like to think that hope is the end of suffering...Most of the time I vacillate between the two. Actually, it is quite a large range -:) I suppose I could lament about the chronic bone marrow pain and the constant shortness of breath, but I can only stand myself for so long...I use to think I was good at having pity parties...I am proud to say they are far and few between...Yet when those challenging times arise, I do acknowledge them and try not to spend too much time with them. I know and you know too they have their cycle as well...going through them and not going around, right?

To be aware of the breath consistently is a sobering and a humbling practice. The phrase, "I can't breathe" takes on a whole new meaning. Let me put it in some context. How the myeloma is showing up in my body is through the bone marrow in my back. Each week the chemo treatment is aggressively treating the cancer and the steroids ease some of the pain. One of the medications side effects is shortness of breath which is compounded by the pressure in the upper chest and this makes it challenging to take long or deep breaths. The myeloma also affects my ability to take deep breaths.

This week I will receive a full body CT scan with the intention of finding the source of the breathing difficulties as well as if the myeloma has spread anywhere else...I suppose as much as I want to know what to do and what is next...being with the unknown is just a little hard right now...kind of letting myself feel being afraid or just a little scared...And then the moment passes...and another moment arises...

I am reminded of the comment by Thich Nhat Hahn, (paraphrasing here)..."all we have is this precious moment...and hope is so important because it can make the present moment less difficult to bear"

May the breath remind me of this present moment
May all moments be held with tenderness and care
May we all walk with grace and mercy

Until then,
with palms together in gratitude and appreciation, Shahara

Journal entry by Shahara Godfrey

My dear family, friends, and beloved communities,

Once I received the news the Multiple Myeloma cancer had returned, the last few weeks have been a whirlwind of frenetic activity... It began with trying to stabilize the bone marrow pain, and then having same day surgery for a port to inserted to help with the chemo treatments and then 2 full on weeks of chemo treatment...whew...a lot to handle...The deer in the headlights syndrome...where I experience the phenomena of being frozen in place and clueless what to do...but moving forward automatically because tasks must be done. This is when I know for sure there is some kind of divine intervention going on.

An interesting note about the return of the myeloma is that this is a cancer that has a remission phase and always returns. The urgency about receiving treatment as quickly as possible is fight the cancer cells and not that the cancer is killing me in this moment.

Now I am moving forward into the 3rd week of treatment...still working out a few medication quirks and getting stabilized. At this time, I receive 3 weeks of chemo and then have a week off. Stabilizing...settling down, settling in... One of the biggest differences between the last time and now is...I am sitting with more awareness...mabye sometimes a little too much...? lol

I can imagine that many of us have experienced a - deer - in - the - headlights moment or two...For that last 2 weeks or so the moments seemed more frequent than less and its improving! I kind of have shaken off the OMG! now what? 

A deep bow of appreciation and gratitude to the support team that has been created, the medical team that is carrying me through this  and my family...Everyone has been pretty amazing. The support team has helped me create the GoFundMe and Caring Bridge accounts. To access the GoFundMe account, go to the site /www.gofundme.com/58mri54. To access the Caring Bridge, go to www.caringbridge.org and type in shaharagodfrey2. My sincerest apologies if you had any difficulties. 

I am still figuring out the kind of support I need both concrete and emotional. I know it will continue to unfold...I will send the contact name (s) and email with the next blog. 

In the short time, that I have requested financial support, the responses have been generous. I am feeling HUGE waves of so much appreciation, gratitude and love. Love is showing up in so many ways. With the practice of the Dharma, the living breath (community) called the Sangha and the wisdom teachings of the Buddha...I will get through the difficult and almost unbearable times to moments of joy to feelings of isolation washing over me to always feelings of being held... Kwan Yin, who hears the cries of the world is hearing mine.

Until the next time...soon
With a deep bow of appreciation, 
Shahara

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Journal entry by Shahara Godfrey

Hi Everyone.
I wanted to let you know that about 2 weeks ago my oncologist told me the multiple myeloma cancer has returned.  When I was initially diagnosed in 2016, I was without symptoms. For the past couple of months I have had a lot of physical discomfort and I was unsure of where the pains were coming from. I have been dealing with bone pain, shortness of breath, fatigue, just to name a few. We have decided to begin chemotherapy as soon as possible starting this week. 

My energy is low and I am mostly staying close to home in Fairfield. I am starting up this Caringbridge again to keep connected with everyone on this new part of the journey...Sigh.....
And a Go FundMe account was set up today to help with the financial limitations that have arisen because of my health.

I hope to be in touch soon. I so appreciate your support as I journey once again into the not-knowing.
With deep gratitude, appreciation and many blessings.
Shahara

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Shahara’s Story

Site created on March 7, 2018

Welcome to Shahara's caring bridge website.  As many of you know,  Shahara was diagnosed with multiple myeloma in 2016 and went through extensive treatment at UC Davis Medical Center.   Your support, prayers and metta were so vital to Shahara and her daughter, Seree during the crisis in her treatment.   Shahara has been in  remission and returned to teaching.  The last couple of months  Shahara  has been feeling a lot of pain in the body and she has learned that the  cancer has come back.   So, we are starting a new caring bridge website to share updates and to provide one place where we can connect with Shahara during this next phase of treatment and healing.   We appreciate all of your support and words of hope and encouragement for Shahara.  Thank you for visiting this site.   with much gratitude, Shahara's support team

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