Day After Surgery

 

"Ah, as we prayed for human help, angels soundlessly,

with single strides, climbed over our prostrate hearts."  RILKE  July 11, 1912

Who could have known, that exactly 100 years before my Leukemia relapse and entry into the hospital -- to the day! July 11, 2012 -- the poet Rilke would write these beautiful poetic words about the Grace of the Universe that knows our prayers and deepest needs even before we ask and is more ready to give than we are to receive!

I find this truth so uplifting, so heartening, so compelling, that I am rendered speechless -- an interesting feat these days with this potent steroid I'm on!

In the last 50 hours or so since I awoke and traveled to the hospital at 3:45 a.m. Tues. for the surgery, I've probably gotten no more than 5 hours of sleep, intermittenly -- the pain has actually been greater than I anticipated.  But I've enjoyed the "awake" time to a degree and the blessed man-made painkillers too.  They are a real gift at times, I must say.   To feel the pain melt away....   Ahhhhh..... 

We are laughing at my new name:  Ms. Frankenheidistein and the fact that I won't be needing a Halloween costume this year.  You should see all the 24 silver staples in my skull... in tidy little row, like glistening braces on skin-teeth across the right quadrant of my head!

I will make this short for today.  I see Dr. Polikoff tomorrow for my next chemo treatment directly into the reservoir they surgically implanted in my brain.  Actually, I can't imagine now what it will feel like because it is so very sore today.  Embrace the pain, that's really all I can do at this point, and hope to get into remission again as quickly as possible!  No more lumbar punctures!   Hooray!!!!!

I have a list of good questions for Dr. P tomorrow so will surely have more to report soon.  But wanted to write briefly today to thank you for being on my awesome prayer team, answering my call for human help with your angel hearts, as the beautiful quote above expresses.

Here's to our mutual transformation through the very specific dances we are given to quiver through and manifest in this Divine Mystery we call our lives.....

LOVE,

Heidi



 

Hello All-

Just a brief note to thank you all for your love, prayers, and kind intentions for Heidi as she underwent the surgery today to implant an Ommaya reservoir for delivery of chemotherapy into her spinal fluid.

We had friends(new and old) and family from Ireland to Wisconsin to Oregon to San Diego to Hawaii and parts beyond rooting for her!!

Although there were the requisite two to three substantial delays this morning after arriving at the hospital about 5:15 am, the surgery itself went well and the neurosurgeon told me he is very pleased with the results. So thankfully this is behind us and Heidi can soon begin further and more effective treatment for the remaining leukemia in her cerebro-spinal fluid.

She went through it all today like a true champion and I am very proud of her courage, feisty spirit, and capacity to smile when thwarted (and having to deal with a cranky boyfriend). She will spend tonight in the hospital for observation and tomorrow I'll take her back to my house for rest and some fun....Just moments ago she ate her first food in almost a whole 24 hours--tuna salad and olive bread...and it was a real pleasure to see and hear her smack those cute lips with real relish and pure deliciousness..

She'll write more in a day or so I am sure. Thank you all for your big hearts and good selves!  Heidi and I are truly heartened by your humanity.

love,
Peter

Surgery Date and Time, and REQUEST FOR PRAYERS

Dear friends and family,

This may be a duplicate for some of you, but wanted to make sure you all received it and could also forward it on to your personal email lists:

I now have the date and time of surgery: Tuesday, September 25 between 7:00-8:30 a.m. It is a fairly short procedure, and "somewhat" routine, but does have risks of infection and bleeding. They will implant the Ommaya reservoir at that time for more effective chemo delivery. The MRI shows NO tumors, and the cranial Nerve does NOT seem to be severed or choked off. But parts of it "are asleep" because of all the trauma to that part of my brain. Healing is slow, if at all, they say, but I count myself in a very good place to eventually get most of my movement back. No one is telling me this from the medical profession as they just don't know, but judging from my progress over the last two weeks, I'm moderately encouraged!

Please bathe me and my beautiful brain and entire body with golden, white light, and all the doctors and technicians, machinery as well,etc. during that time (7-8:30 a.m. -- and as often during the day as you think of it), visualizing the reservoir going in perfectly and being accepted perfectly, with comfort and grace! Thank you!

I shall be in the Kaiser hospital here in San Diego for one night the doctor tells me, til Wed. morning.

Each day these days is a roller coaster for me, but I am making it through remarkably positively. I had a lumbar puncture yesterday with the methotrexate. Once he numbed the area with the shot, which was extremely painful and always has been :) the intrathecal chemo went in like a charm. I realized more than ever yesterday, and my oncologist explained very clearly based on their many years of experience, that the cancer will just eventually return. He wants me on the methotrexate for some months as a maintenance therapy, and so I have other tough decisions coming up -- how far to go with with "palliative" treatment and if/when to shift entirely to cold energy again or other alternative treatments in order to eradicate everything -- and if and how that might be possible. I know certain things work for some people and others not. It's so very individual. I need to be deeply guided by Spirit here. Dr. P said leukemia is one of the more pernicious forms of cancer "to get every cell."

I also have to decide definitely about whether to get the bone marrow transplant, considered the only hope of a real cure.  Have a consult at City of Hope On October 5th.    

In the meantime, I am pleased that I am eradicating most (if not all!) of what's left and beginning to feel better. My facial nerve is coming back oh-so-gradually and am extremely grateful for these little increments of improvement.  I'll take what little (or lot!) I can get. Today I can pronounce the letter "P". I still can't close my mouth when I eat though, which makes chewing still a challenge and limits what I can eat.

 

Will be in touch after the surgery and we'll see where we go from there! 

 

Fully in this fantastic journey of healing and consciousness, with love for each of you.....

 

Heidi

To Smile Again....

My dear ones,

Today I met with the neuro-surgeon who will perform surgery to implant a port in my brain that will administer the chemotherapy directly to that region.  The reason I've decided to go this route -- at least for now -- is because my oncologist said the chemo will be more effective with less side effects as opposed to being administered to my spine. However, there are risks associated with the surgery, obviously, but very low --2 % or so.  Accidentally cutting a blood vein, developing brain swelling, etc.  I also have very small ventricular area, where they implant the port.  The other way of looking at this is I have a very FULL brain!  Anyway, he thought this wouldn't be a problem.

Probably the most discouraging news I got from him today, and which I'm trying with everything in me to stay positive about -- is that this nerve is extremely fragile (like tissue paper) and often doesn't regenerate.  It controls my ability to smile, eat, talk -- my basic ability to express my Heidi-ness through my face.  I can't imagine going through the rest of my life like this.  But I also know that there is a whole dimension of finer forces at work, and there is grace, and prayer, and Light and miracles.  The surgeon, a very nice man, said today that many of the people who pass through his office would like to be where I am at -- their symptoms are so much worse.  For this I am grateful.  I am grateful for the extraordinary healing resources I have available to me as well.  I believe we are living in a huge, dynamic field of grace where anything is possible.  I visualize  the nerve regenerating all the time and know that my thoughts, feelings and intentions are having an effect.  Peter told me today that my face has just a little bit more of a smile than yesterday.  Please, my dear friends and family, see me in your mind's eye, smiling brightly.  Your own positive thoughts and intentions will cross through the morphologic field we live in to do wonders on my behalf.  Of that I am sure.

While my external expression is not what it was before -- at least for now -- I have more inner clarity about love, compassion, healing, purpose and potential than at any other time in my life.  It's one of those ironies. This experience is taking me very deep into my inner cave of reflection and connection with Spirit, perhaps as nothing else could.

I love you all and I so deeply appreciate your powerful and tender care on my behalf. 

Heidi

Spinal Tap Results

Dear Friends and Family, 

The good news and the.... "other"....news...

I knew this spinal tap would be lifechanging, and it surely was.  Peter and I were driving home from the Nucca appointment....to his house (for the first time in 3 months) when the phone rang.  It was Dr. Polikoff with the results.  It hadn't even taken 24 hours to get the FULL results back.  I'm very sensitive to the unspoken and to energy, and within a milisecond, I could tell it wasn't going to be what I had hoped to hear.  "There are Leukemia cells in your spinal fluid."  I took the news calmly.  Actually, I think I was numb after hearing that for about an hour.  And then the understandable emotional response came, once Peter and I got to his house.  "Is this my time to go?"  "Was I given only an extension to me life?"   "Have I completed my lessons here on earth.?"  "Why did I get a clear reading so many times with the cold energy treatment if the cancer was not completely eradicated?"

Before progressing any further, I want to share with you the GOOD news.  The last spinal tap I had was exactly two months ago on July 13.  My White Blood Count in the spinal fluid was a whopping 7200 at that time (it should be zero).  On September 13 it was a mere 208.  That is why I've been feeling so much better.  Dr. Polikoff feels that the remaining cells left have attached themselves to my 7th cranial nerve which affects the face.  The blessing of this is that it signaled me big time that something wasn't right.  So it got me starting the chemo immediately yesterday (I have to take drastic measures now to take care of this because if the nerve gets further damaged it could be permanent and could compromise me even further in terms of ability to see at all, hear, taste, eat.  I cannot take that chance).

Dr. Polikoff said that I am very responsive to Methotrexate, which he injected into my spine yesterday -- yes, another bout of pain, but pain with a big purpose, so I accepted it gratefully.  I got back on a powerful steroid  that crosses the body/brain barrier better than Prednisone and has a very quick effect in pushing the cancer back.  I'm already feeling better this morning and can speak better -- and not even 24 hours have gone by.

Peter and I think -- at least it makes a kind of logical sense to us -- that because there seems to be so little cancer left,  the chemo should eradicate it quickly.  Dr. P said I'm very responsive to this particular chemo.  My plan is to do the chemo into my spinal fluid until it shows nothing is there anymore, and then switch to the cold energy as a maintenance therapy....and do a few more things.  Possibly the Optimal Health Institute which brings the body into complete alkalinity.  Cancer cannot survive in an Alkaline system....or so they say, but it's worth a try, I think.

I have my warrior hat firmly in place....  I am positive and hopeful, even in the face of this news.  I know all that is happening now is unfolding according to a divine plan.  There is a mystery at work, and I need to set aside my mind so I can hear the voice and promptings of Spirit.

In closing I just want to add that a thought occurred to me in the night last night.  It has to do with how often the dual mind polarizes pretty much everything into categories of good/bad, light/dark, human/divine.  I have always been intrigued and inspired by these two words:  "reconciling opposites."  What if life is bigger than the categories we conjure up mentally to make sense of things.  What if it's not about chemo being "bad" and cold energy healing treatments "good"?  I understand from the healers that they cancel each other out if done at the same time.  OK.  That may be true.  But I would like to think that a combination in some form, as this journey unfolds, is also in the divine plan.

And one other thought (blame it on the steriod that this email is so long!  I get quite amped on it!)   I wanted to end with this poetic thought: 

 

Isn't it astonishing that the stars up
   above only show themselves in
the Darkness of Night?

 

 

 

With love, grace and gratitude,

 

Heidi

Spinal Tap Today

Hi Everyone,

My spinal tap this morning was the best one I have ever had in terms of ease and lack of pain.  There have been times when the doctor couldn't find the right spot and had to poke me with the thick needle for up to 30 mins!   Today I was in and out of the office in about 10.  The needle went in with hardly any pain (unheard of as these procedures are nortoriously painfuly).  I attribute this to all your support, love and prayers and to my listening to a beautiful healing visualization for a couple of hours before the procedure

Dr. Polikoff said that "some" results could come in as early as a day or two.  There are a number of types of cells and qualities to the spinal fluid they need to check.  It takes time to incubate all of these over a period of a week or so.  But tonight my cerebrospinal protein levels came back.  The norm on the Kaiser website says they are between 15-45.  Another website said 15-60.  It all depends on the lab you look at.  My level was 59!  High levels are considered over 100.  I'd say I got a pretty good reading, from my uneducated perspective.  Not sure what this all means, of course, but high protein levels are definitely not a good thing and that mine are within range (more or less) is encouraging.  We still have a long way to go with getting all the results and understanding what they mean.  I've asked Dr.  Polikoff for a comparison between my spinal tap in July and the one today.  I have no doubt there will be a big difference for the better.

This is such a significant test.  It will determine next steps.  Dr. Polikoff thinks that the facial paralysis is due to cancer and wants to start me on chemo drugs again. All will depend on what we find and Peter and I are not at all convinced I have any leukemia.... Meanwhile, he wants me to start with a higher dose steroid again to improve the paralysis in my face.  It got a bit worse today.  I'm going to acupuncture several times a week and have just started today a chiropractic technique called NUCCA.  It came highly recommended for neurological issues including facial paralysis.  I am going to some type of appointment every day!

More news will come soon.  Love to you all--Heidi

A long, winding river.....

Hi Everyone,

Crossing the river has had some recent, unexpected white water!  I came across some strong turbulence in the form of facial paralysis about a week ago.  Since it's difficult to see right now (and thus to type), will copy Peter's message to some friends and let his words inform you all.  Am keeping up a brave spirit as much as possible!  I continue to come out "clear" from a cancer perspective so don't feel it's cancer that's causing the paralysis.  Hope to find out more within the next two weeks.   A recent CT scan came back normal, ruling out stroke and tumors, thankfully.  Spinal tap is this Thurs.  Please keep me in your prayers between 9:30 -10 a.m.  Thank you!    Will keep you informed.  All my love,  Heidi

Hello all--

I have some difficult news about my dear Heidi..She has developed facial palsy--a semi paralysis of her face including eyes, mouth, jaw--over the past several days. Initially it was thought to be something called Bell's Palsy which is on one side of the face, a real nuisance, and almost always time limited. However the paralysis has extended to both sides of her face now and it's very hard for her to eat, to talk, to read or even watch tv and there is pain and significant discomfort at times.

We saw an opthamalogist today who taught us how to care for her eyes so they don't dry out and become at risk for injury. This doctor feels she needs to be seen by her oncologist and we are doing so on Thursday when she'll have a spinal tap and have her cerebro-spinal fluid evaluated again for the presence or absence of leukemia.

There is worry that the facial palsy could be caused by the leukemia, yet in other ways she is doing so much better than even 2-3 weeks ago in terms of energy and strength...There's a small chance the paralysis could be a neuropathy caused by chemotherapy but the eye doctor today didn't think this is likely.

So, she and I ask for your prayers, good wishes, thoughts of love and support through this phase of the experience.

In love,

Peter

Hello all--

I have some difficult news about my dear Heidi..She has developed facial palsy--a semi paralysis of her face including eyes, mouth, jaw--over the past several days. Initially it was thought to be something called Bell's Palsy which is on one side of the face, a real nuisance, and almost always time limited.  However the paralysis has extended to both sides of her face now and it's very hard for her to eat, to talk, to read or even watch tv and there is pain and significant discomfort at times.

We saw an opthamalogist today who taught us how to care for her eyes so they don't dry out and become at risk for injury. This doctor feels she needs to be seen by her oncologist and we are doing so on Thursday when she'll have a spinal tap and have her cerebro-spinal fluid evaluated again for the presence or absence of leukemia.

There is worry that the facial palsy could be caused by the leukemia, yet in other ways she is doing so much better than even 2-3 weeks ago in terms of energy and strength...There's a small chance the paralysis could be a neuropathy caused by chemotherapy but the eye doctor today didn't think this is likely.

So, she and I ask for your prayers, good wishes, thoughts of love and support through this phase of the experience.

In love,
Peter

Update

Progress is amazing, albeit slow, but ever so gratefully there from week to week.   My last healing session Sunday evening showed only a "wiff" of cancer in my brain.  We are still on a weekly schedule, rather than daily.  Chris said the cancer is very weak and on its way out for good. After next Sunday, if all goes well, I'll be on a monthly "maintenance" schedule for my sessons.  Then, on Sept. 13 -- just a week from this Thurs. -- I'll have my spinal fluid checked by Kaiser.  If cancer shows up, I'll probably go back to daily sessions for awhile. 

One thing is for sure -- my energy is returning and I'm able to have more activity in my life: eating out, taking drives, even brief shopping excursions.  This is all very miraculous as this form of cancer is terminal according to Western medicine. 

After about 7 weeks (just last week, actually) I began to get a constant pain in the back of my head where the cerebellum is.  This is the part of the brain that oversees balance and motor skills.  It feels like nerve pain and I definitely have to be on pain medication around the clock for it.  I still have challenges with my balance.  You wouldn't notice it if you just saw me walking in stride, although I am a bit slower than most people.  But if I turn, get up, get out of a car, etc. am not able to get my balance as smoothly as I used to.  Today I will tell Kaiser about it and they will probably order an MRI to see what's going on.  Hopefully it will be something that will repair over time....neuropathy, for example, sometimes gets better on its own.  I just ordered a fascinating book called   The Brain That Changes Itself   to learn more about brain healing.

This is such a multi-faceted experience.   I can't think of any dimension of my life that is not affected. Someone without the options I've had would have passed on by now.  That is not only a deeply humbling thought, but stirring and "shivering" on a profound level. The intricacies of life, destiny, soul lessons and choice.  I live each day reflecting with appreciation on how these weave themselves into and through our lives in the "seeming" random events that unfold.  The fact that the doctors didn't catch the relapse until it had progressed almost to the point of no return is amazing to me...and yet I believe this gave me the experience of seeing everything through the eyes of LOVE.  Had I not been nearly slipping out of my body, perhaps this would not have been the case. I would never have had this experience that has changed my perspective in so many ways.......

Living with uncertainty.  We all have this, don't we?  Several significant unknowns still exist for me:  does the cancer still remain? Will it come back sooner or later or not at all?  Will the pain in my head ever go away?  Will I be able to walk again as before?  Sometimes we are just not given the answers that the mind, living in a dual world, craves and has become so accustomed to.  My feeling is this is meant to carry us into deeper realms of consciousness, beyond the domain of duality, into the vast stretches of pure being....  We can only surrender linear thinking here and let a larger experience of life have its way with us. 

Thank you for your continuing care, interest and support...Love to you all...

Heidi