Hi Everyone!  I wanted to start out letting you know how much I have been appreciating your well-wishes and love. Your cards, phone calls, messages, physical support, etc. sustain me as I travel through this intense experience.  I haven't been able to call everyone back who has left me a message, but I think about you all the time and little by little am trying to connect with you as I'm able.    This week brought really good news from my oncologist.  Peter took me to an appointment I had made a good while ago (before the relapse) and had never cancelled when I went into the hospital.  After Dr. Polikoff agreed to do the spinal tap during this appointment, I asked him if we could postpone it until I'm finished with my healing sessions so we can verify at that time if I'm indeed in a remission.  He said OK, so I'll have the spinal tap in September when he returns from his vacation.   But I took the general appointment anyway, just so I could see him and he could see how well I'm doing.  The last time he saw me I had one foot on the other side and he didn't think I'd make it without any traditional Western treatment.

I walked into his office without a walker and he was blown away!  He told me that in all his years as an oncologist (35) he has never seen anything like this and that I'm "unique" in his experience.  He further said that if we were to give me a spinal tap that day (instead of having postponed it a month) it wouldn't show any growth of the leukemia and most likely would show less or none at all, just based on how well I looked and am doing!  He was curious to know what kind of "energy treatment" I was receiving and I told him.  He's a very conservative type of doctor, and very respected in Kaiser. He's in charge of all chemotherapy clinical trials within Kaiser, for example, and was voted "partner of the year" last year, so is quite invested in chemotherapy protocols. We were so bouyed up by his response that we actually went out to a restaurant afterwards to celebrate. However, I realized when we got home that I had overdone it and was completely exhausted.  Nevertheless, sitting in that restaurant and feeling "normal" again was a real boost to my spirit.

The other news is that I had my bloodwork done this week and it was, and still is I feel, abnormally low. I've been more tired these last two days than I've been in awhile, sleeping or resting most of the day.  My hemoglobin, for example, is 8.5 and the normal is 13.    This is what carries oxygen to the blood and muscles. They give blood transfusions when you get as low as 8.0.   I've been hovering around this number recently, but they won't transfuse me til I'm actually at 8 or below.   So I've been reading online about how to boost my hemoglobin through diet and have added some iron to the super healthy smoothies I have each day.  I hope this helps.  We'll see.  My naturally curious mind wonders why it's so low these days, but there is really no telling since what I'm doing is so unprecedented.  So I have to go on faith and trust that all will be well.....

Often I feel overwhelmed with gratitude -- gratitude that I happen to know most likely the only two people on the planet who give this treatment and they happen to live close by, gratitude that through their help and the help of all of you and the supplements I'm taking, I'm turning around a deadly form of cancer that is 93% terminal when a relapse happens, gratitude that it has brought me so much closer to my dear family and friends and to people in my past whom I needed to forgive and love again.  If the relapse hadn't have occurred I wouldn't have gone so deeply into my soul. 

Here's a quote Peter sent me this morning.... 

"I marvel not only over the capacity to see, but also for the gift of reflection, the ability to integrate each new vision with all previous experience, to know that I am connected to all that has been, all that is now, and all that is to come. I can choose to live in contemplative fidelity to each moment of radical amazement, knowing that something great is indeed happening in my soul." -- Judy Cannato from Radical Amazement

Love, Heidi

Dear Family and Friends,

More to report!  But before I do so, let me just thank all of you have been donating for my care from the bottom (and top) of my heart!  I am overwhelmed by everyone's kindness and generosity.  To be in the position of "receiver" has been very humbling for me.  I am surrounded by all kinds of giving -- volunteers (my dear Peter, family and friends) have been with me for the last month around the clock.  Thank you for giving me part of your lives, your love, your good will and support, and your material means.  This all means more to me than I can ever express!  It's at times like this that we realize that when everything else goes, when hard times come, we are sustained, literally, by those we love.

The last few days have brought more energy.  The hospice nurses were able to take out the catheter, thank goodness, making it much easier for me to navigate out of my bed.  Apparently one of  the doctors in the hospital made the comment "Heidi will probably not be able to walk again," and I am proving them wrong as each day sees more of my motor skills return, especially walking -- still a bit on the halting/unsteady side.  I wasn't able to sit up in my bed for more than a few seconds just 3 short weeks ago.   Now I sit up most of the day.  The alternative treatment I'm receiving seems to be working and this is with an illness where Western medicine really has nothing else to offer.  They gave me just two months to live in the hospital if I didn't have any treatment.  I can hardly believe it as I write this, if I had not experienced the beginning of the "sleep of death" -- a letting go process of this world, the senses, one's cognitive faculties, etc.  There have been moments during this time when I could "sense" that things could go either way -- life OR death.  I just couldn't tell which one.  It was as if it hadn't yet been determined.....until one day, when I began to feel the tiniest resurgence of life within.  The will to live is a powerful thing, and I've had a strong will to live, along with a feeling that, God willing, there is more for me to do, learn, be in life.  We shall see.  For the moment I am happily appreciating each day and all my many, many blessings which include each one of you.

As I wrote in my last update, I had a very unusual experience for a time for a week or so.  Here is something I wrote recently to a friend, describing it in more detail:  "The ONLY thing real to me during the days I was in this "consciousness" was LOVE and oneness. There simply wasn't anything else...even though I was suffering pretty intensely at the time. I felt no fear. There was an "equality" to everyone I saw and interacted with.  Everyone was incredibly special, a bright light, with unique and amazing qualities.  I truly could see this. It was not just an intellectual understanding. There is a big difference. KNOWING it is experiencing it on a whole other level, complete with feelings and insights that are specific to the people who are placed in your life at any given moment, even total strangers. So all my family and friends, the nurses in the hospital, the doctors, the young men in the ambulance with me...everyone....sparkled anew with their soul qualities before my very eyes. It wasn't difficult at all to see their essence, their special gifts and even their larger purpose....."

The brain scientist, Jill Bolte, who had a stroke and wrote about it in her book "My Stroke of Insight", described so well what she experienced as her brain's natural functions, especially the logical, reasoning part, faded and she began to experience only a wonderful oneness with the universe: 

"When she lost the skills of her left brain, her consciousness shifted away from normal reality and she felt 'at one with the universe.' Taylor helps others not only rebuild their brains from trauma, but helps those of us with normal brains better understand how we can consciously influence the neural circuitry underlying what we think, how we feel and how we react to life's circumstances."



In my own small way I felt I had a tiny glimpse of this. As the "neural circuitry" began to come back "online" I began to feel myself re-enter this amazing material dimension more and more.   I began to shift BACK into the normal reality we all are so familiar with.  At first it was the ability to step back and wonder "What the heck happened to me these last few weeks?"  Then I could feel my reasoning come back:  "What am I going to do now?"  There were some bumps on the road here.  I felt moments of being overwhelmed by my condition.  Now, as I reflect on everything, I try to bring back the memory of that week or so when the "I" part of me was out of the way, at least to a degree, and thus any sense of being in control was out of the way too.  There is truly nothing like a life or death situation to show us how our lives are so utterly in the hands of the Universe, God.

Other practical things about my progress:  Peter and I took a walk yesterday without my walker!  I'm not yet steady enough on my feet to do that alone and still need someone next to me to hold on to.  But it felt so good to be doing this again.  Other bodily functions are becoming more normal, and I'm eating really well.  I'm beginning to visualize my next piece of art....  I took a shower this morning by myself and Peter and I took a drive the other evening to get an ice cream cone...

That's it for now.  Thanks for your care and interest.

Heidi

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My dear friends and family,

It has almost been one month to the day that a good friend of mine called 911 for me and I was taken, by ambulance, to Kaiser Hospital.  The summer started with a sense that things were just "not right" with my health and I began my incredibly thorough journey of getting to the bottom of it sometime in May.  It started with increasing tiredness which only got worse as the weeks wore on.  Then bodily functions ceased functioning well or at all.  Headaches began.  Interestingly enough, all my emails to my oncologist, trips to Urgent Care and the ER for 2 months didn't uncover the cause:  a relapse of the Leukemia. It took a very bright doctor at Kaiser to consider giving me a spinal tap.  I'll never forget her kind and compassionate face when she came in with the news:  "Heidi, I'm sorry to tell you that you have alot of abnormal cells in your spinal fluid."  By that time, alot of damage had already been done and they gave me just weeks to live if I didn't have any treatment.

Oddly, such a relapse had never crossed my mind.  I had thought, rather, that almost two years of chemotherapy was finally taking its toll.  In retrospect, I'm amazed at how positive I've been through this whole ordeal.  I never thought the Leukemia came to take my life but to awaken me in some ways.  Now, in the hospital and for weeks afterward, I didn't know if this would be my time to leave this earth.  And it all happened so quickly.  I felt like I was slipping away.  I'm much better now, which is why I'm putting this in past tense.  I don't feel I'm declining anymore, but rather getting stronger with each day, though I have a long way to go in my healing journey.

What I never knew about Leukemia this whole time was that it could return JUST in the spinal fluid.  (My bone marrow is fine.)  Frankly, I didn't know too much about the spinal fluid, what it does, and what happens when it is "messed with" by cancer.  All of a sudden I went from being independent to being bed-bound and unable to walk or even sit up on my own.  In those early days I didn't know if I'd ever be able to walk again!  Kaiser told me they could basically just offer me palliative care.  A Bone Marrow transplant at City of Hope could offer me a 10% chance of a cure or simply prolong my life, if successful.  So I opted to go with some very wonderful and unique alternative treatments, which definitely are helping me.  I'm able to walk with a walker now, sit up in bed most of the day, eat a fairly normal diet and type.   My functioning is gradually coming back.

What I want to communicate to you more than anything right now is how grateful I am for how you have all rallied around me.  I have never felt so loved and cared for in all my life.  I've been BLOWN AWAY by your support on so many levels. 

Also, a remarkable thing happened to me in the hospital.  I somehow was given a glimpse of the true nature of life, which is LOVE.  It was extraordinary and experiential....not merely an intellectual understanding.  It was a state of consciousness. Even just describing it now in this update seems so small.  I will communicate about it more in future updates.   As I've gotten more of my functioning back, I've also seen how different functioning of my mind (reasoning, logic, etc) have also returned more.  But during those early days in the hospital there was no filter -- nothing keeping me from the experience of pure love, without any opposite or clarifier.  I saw my life, and all the events in my life, especially the difficult ones, as gifts that had been perfectly planned and executed by love.  This was not some fantasy, imagination, inspiration I had read in a book or hospital drug-induced haze...but real, complete with a sense of knowing in the deepest fiber of my being.  I felt like I could see "through" people into their souls.  Their particular spiritual orientation or belief system didn't matter in the least, or get in the way of seeing a deeper truth.  In fact, that's really all I saw for a few days.  I will never forget the simplicity and absolute clarity I experienced on this level, though now the experience has dimmed quite a bit and my "new/old" self is back more and more....  I share this with you because it is such good news, and if it can happen to me, it can happen to all of us since there is a oneness that runs through our spirits.....  It's as if we become more of our true selves when we face the end of life and our ego-self begins to fade....

Also, for those of you who don't know about a wonderful new fund raising website my boyfriend, Peter, and dear brother, Kevin, put together, please check it out if you feel so inclined:  http://www.giveforward.com/helpheidi   and forward to others too if you like.

I should be able to give more regular updates now.  Just learned that my blood work (taken yesterday) is improving!  My CBC (complete blood count) is improving!  A sign that my alternative treatment is working well!  Really good news!

So much love for all of you,

Heidi

Hello all--It's Heidi's second week at home now and I stayed up here in Oceanside past few days. Will return to SD and work tomorrow. There have been several necessary in-home visits recently of hospice nurses, caregiver agencies to interview,etc and she is very fatigued last eve and today...Sadly too today, she had an atrial fibrillation episode (still ongoing) which on top of the leukemia is almost unbearable. She is resting now but was very distressed earlier. If it doesn't clear within an hour or so, we will talk again with Kaiser to see  what might be needed to help her.  It is profoundly enervating and overwhelming for her to have to go through this.

And this is the first a-fib she's had in quite awhile, when they used to be much more frequent, so we are thankful for that

 

Needless to say, she needs quiet and rest and love and ease. Period. So no visitors for at least this entire week is the plan and I thank you for hearing that and respecting it in spite of how much some of you miss her and want to see her and give her your love.

 

Her brother Greg has been here for a couple of weeks or so and goes back home to WI on Friday.He has been a stalwart pillar of brotherly care, pragmatic help and love for Heidi..

 

We then will move into a mode of her care being provided by a team including me, a caregiver agency who seem wonderful, and a couple of friends and maybe a fill-in nursing student for back-up, breaks for me,etc...

 

Your thoughts and prayers and loving-kindnesses are welcomed wholeheartedly and appreciated deeply.

 

warmly,

Peter

Monday, July 23, 2012 - Peter on behalf of Heidi

Hi all--Heidi thankfully came home from the hospital yesterday. She is feeling and doing a little better at home. She is on hospice through Kaiser and right now is not in appreciable pain and is not nearly as nauseous as she had been. Her appetite is pretty good this past 24 hrs which is wonderful to see...And, she still is quite weak and needs someone with her at all times.

 

She is not receiving at this time any chemotherapy by her choice. We were told it would only be palliative and might even cause her additional discomfort or worse. She is receiving energy healing from a woman who treats cancer patients with some success.

 

She, and we, are focussing this whole week on her resting. So at the doctor's and the healer's advice, we're asking that she not be called this week nor visited..

 

Since she needs 24 care now and we don't know if that will change in the forseeable future, I am asking for volunteers to be with her on a rotating schedule...a few hours here and there will help her and us...And we will be hiring some folks I am sure fairly soon..So if you have any ideas about responsible, caring people and/or agencies please let me know. She has an extra bedroom and so someone might be able to stay for free as partial payment for helping her.

 

Your love, prayers, kind thoughts for Heidi are deeply deeply appreciated. More than I can say in fact.

-Peter

Spring Update

Hello again to my friends, well-wishers and family,

It's hard to believe that I've been out of the hospital now for one year.  My final day there was April 17, 2011. Time is one of the only things in life that can be both fast and slow simultaneously.   Since my release all those many months ago, I've been diligent with my chemo treatments....no easy feat, to say the least.  I marvel at my body's ability to hold up under the increasing strain.  Dr. Polikoff told me recently that only 30% of adults with ALL actually finish chemotherapy because it is such a difficult journey with a high level of toxic side effects.  But here I am 1 1/2 years inito the protocol, with only 6 more months to go.  I'm  committed to getting to the finish line of this incredible marathon I've been on. 

I watched a documentary on the Discovery channel a few weeks ago on the Iditarod.  For those of you who don't know about the Iditarod, it is a grueling dog sled race in Alaska over 1,000 miles long.  Find out more about it here:   http://iditarod.com/about/history/   As I watched it, I couldn't help draw similarities with my own personal Iditarod this past 1 1/2 years.  Both are lonely journeys -- just you and the elements.  Both call on the hero within and those special qualities no one can give you but yourself:  perseverance, faith and grit.  There is pain and hardship along the way.  You learn to rely on those close to you for support and cheer (your dogs in the Iditarod and your friends/family in cancer).  There is joy in crossing the finish line, no matter where you "place" in the race.  Just knowing you didn't give up is a reward in itself.. 

It takes all of this, and more, to keep going with my treatment, especially as new side effects pop up.  I can feel a deeper level of the chemotherapy now in my body, cummulatively.  I can feel the effects it's having on my healthy tissues and organs.  But it is for the greater good to continue, whatever the cost, as I know I have to give myself every chance to beat this disease FOR GOOD.

One of the side effects has been a curious form of tinnitus called Pulsatile Tinnitus.  I hear my heartbeat in my left ear constantly.  It is loud and clear, thumping away like the sound of a clock....  Well, not always, thank goodness!  I must say, it gives new meaning to the phrase:  "Listen to your heart."

My Atrial Fibrillation has, over the last several weeks, become more frequent.  One advantage:  I can tell immediately when it goes out of the sinus rhythm now because I can hear it!  The Afib on top of the chemo treatment and low blood counts lays me flat out.  I can't get the surgery to correct it until I finish chemo.  Meanwhile, my fingers are crossed that it doesn't become chronic prior to that, as the surgery is less effective then.   All of this is pretty dicey at times.  I can't help but wonder how I got both of these at the same time....Leukemia would have been plenty, right?  But there are no accidents in life.  I'm convinced there is a deep and benevolent purpose to all of this in my life, even though I'm not completely sure yet what it is! 

Peter offered up this insightful wisdom recently, "Heidi, maybe it came to slow you down!"   I know what you're thinking -- those of you who know me well:  "Duh!"  Well, it's true.  I've been one of those fortunate souls wired for action!  Leukemia literally forced me to slow down.  I admit, it's a HUGE "pattern interrupt."   I'm not sure a brief foray into cancer territory would have been enough!  (Not that any cancer is easy...)  I had to get a 2 year chemo program with daily, weekly, monthly chemo!

On a positive note, I had an appointment today with a wonderful (and very accurate) medical intuitive named Laura Kamm www.energymedicine.org).   I avail myself of her gifts at critical junctures in my treatment.  The increasing side effects, along with Afib, brought me to that point recently.   I especially wanted her to look at whether or not I have any MRD (minimal residual disease).  I had mentioned what this is in an earlier entry:

More than 80 percent of adults with acute lymphoblastic leukemia (ALL) achieve complete remission (CR) and up to one-half may experience prolonged disease-free survival and be "cured" of their disease. However, many will experience a recurrence and die of leukemia. Relapse is thought to result from residual leukemic cells that remain following the achievement of "complete" remission, but are below the limits of detection using conventional morphologic assessment. These subclinical levels of residual leukemia are termed minimal residual disease (MRD) and can be evaluated using more sensitive assays.

Needless to say, it's extremely important to find out where I stand in this regard.  The MRD test is not the standard of care at Kaiser and the cost of the test elsewhere starts at $45K, so is out of the question. The good news:   Laura could not detect any evidence whatsoever of MRD in me.  I would love it if Western medicine could also put their "stamp" on this statement, but for now, I am comforted and encouraged.  Laura looks at things from 3 perspectives:  potentials, possibilities and probabilities.  She said I still have the "potential" for a recurrence so need to continue my work with nutrition, visualization and affirmation.    I figure we all have the potential for both illness and health, so I'm redoubling my efforts to focus on the latter!

On the creative front:  I've been painting more and writing more.   Here's my latest.  I call her the Green Tara:

"Tara" dates back to the pre-Vedic period and was also adopted by Buddhism as an archetype of the perfected feminine essence. She is the Mother of Compassion, Mercy, and Forgiveness.

Here are a few pictures from my recent trips into healing nature with Peter on the weekends....

Sedona, AZ  January, 2012

Joshua Tree National Park -- a birthday weekend (above and below)

Thanks for listening....   I think about you all so often and appreciate your love and prayers, more than you can know.   Stay tuned in the upcoming months for more from this heart to yours....

Heidi

Dear friends and family,

It has been such an incredibly long time since I've updated you.  Life has a way of moving on, and thank goodness for that!  This morning I wondered if a little update might be appreciated.  So here goes...

I've been finding my way in the "new normal" of this maintenance phase of my treatment -- daily, weekly and monthly chemo treatments.  In the midst of low energy caused by sub-normal blood counts (due to chemo), I'm settling into life as it is.....for the most part.  I say "for the most part" because there are still days, like today, when I feel the urge to be in connection with a larger purpose.  Something inclusive of humanity, serviceful....only to realize how intensely purposeful my inner life is at the moment.  And how that is, above all else, ultimately the most important purpose. The ways of the past are gone, at least for now.  That bursting energy I used to feel, like an unbridled colt or a strong gust of wind, is simply no where to be found.... So I give in, allow, let the river of life flow as it will.

Sometimes life has us incubating...."on the shelf".  There is simply nothing we can do about it.  We can resist or surrender.  The choice is ours.  "In surrendering the mainstays of your former worldview and separating yourself from everyday community life, your old anchors and familiar reference points disappear.  You will have to rely on yourself more deeply and fully than ever before."  (Soulcraft, by Bill Plotkin).   I'm reading this wonderful book now and it stirs my soul with strength and vision.  "Sometimes, without any effort on our part and when we least expect it, the soul shows up, pulls the rug of ordinary life from beneath us, and showers us with its confounding radiance.  We hear our true name spoken for the first time, or an angel appears and invites us to wrestle, or we awake in the wilderness at midnight....."

Leukemia has showered me with its confounding radiance and given me plenty of angels (and demons) to wrestle with. In the midst of it all, it has shown me that there is a hero inside, perhaps a reluctant hero...but a hero nonetheless.  All I've had to do is continue to show up.  I don't need to win any battles or be profoundly positive or philosophical every moment...  The soul of the hero is simply  in not giving up.  Well, at least, for today, I can do that.  I can lay in my bed, exhausted, and think about beauty.  I can write this blog.  I can smile at the cashier at Trader Joe's...

My art has come powerfully into my life again.   Out of the blue new opportunities have come, and I've been relishing them. 

Peter and I went to a wonderful concert recently at the home of Lauren and Ken Golden -- piano and violin.  I was swept off my feet, literally, listening to the beautiful music of Rachmoninoff, and other great composers of old (and new).  They had a super comfortable recliner they let me use, so I listened "in style" and let the music swirl through my being, carrying me to places both mystical and magical.  Here's a photo from that night -- Peter and I with a good friend, Therese....

Well, folks, that's it for now.  I continue to appreciate your well wishes.  Am beginning to see the light at the end of the tunnel -- only 10 more months of chemo and I'll be done...FINALLY. 

Sending each of you love and a big warm, fuzzy HUG!

Heidi