What You Can Do To Help

In April, I was diagnosed with very severe Aplastic Anemia, a life threatening disease.   Aplastic anemia means that my bone marrow has stopped producing red and white blood cells and platelets.   I currently require blood and/or platelet transfusions every week and I will be getting these transfusions at St. Vincent's hospital regularly.  I am not contagious in any way. That said, while I have low energy, I am able to drive and function as a more or less normal human being.  According to the Western experts, I need a bone marrow transplant in order to fully recover.

1. Become a Bone Marrow Donor

Information at http://www.livingdonorsonline.org/marrow/marrow4.htm

In order to become a Donor, your blood type and tissue antigens must be compatible with the recipient, and you must be healthy enough to withstand the donation process.

1. You must be at least 18 but not older than 60. 

2. My blood type is A Rh positive or A+.  If you would like to donate to me specifically, you must have Type A or Type O blood.

Option 1 (http://www.bonemarrowtest.com/) is $175 for the standard kit and $375 for the express kit. As you mentioned this is just to be tested, there is no commitment to donate to anyone except me.

For those of you, who would like to donate only to me, the following information is required:

Seattle Cancer Care Alliance
825 Eastlake Ave E
PO Box 19023
Seattle WA 98109-1023

My name is Karen Mauthe. birthday: 11/16/1972
My SCCA doctor until June 6: Dr. Effie Petersdorf.
My SCCA doctor after June 6 until July: Dr. Doney
My bone marrow coordinator or Certified Search specilist Unrelated Donors: Greg Higgins

Greg's Info: Tele 800.804.8824
                   Fax 206.288.1011
                   email:  ghiggins@seattlecca.org

Option 2 has some cost which depends on how well http://www.marrow.org/ has been treated by donors (in these tough times). Here you join the national registry and commit to donate to anyone that has a need and is a match (you can opt or refuse at any time, but this is clearly not hoped for).  The organization said that the cost is about $100 for them and they required a minimum of about $50 to test and be enrolled in the registry.

Both organizations have a plethora of information on Bone Marrow Donorship.

2. Help me find suitable housing in Santa Fe.

Here's my condition as of right now:  I am able to live by myself.   I do not have hepatitis of any kind nor am I contagious in any way.   I am dedicating the next few months to work to improve my condition through my yoga practice and alternative healing methods.   I need very clean, centrally-located housing in Santa Fe to live.  Just last week my friends and family recently cleaned out my old apartment and put all of my belongings in storage.  Ideally, I would like flexibility with regards to my length of stay as nobody can predict how long it will take to find a suitable Bone Marrow Donor. 

3. Help me with Daily Existence

For people who are in my area, I need help with the daily chores that most of us take for granted:  grocery shopping, organic nutritious meals in keeping with my dietary challenges, cleaning.    I need to conserve what energy I have for healing.  If you have special healing powers that you'd like to offer, please let me know.   My friends and family have been very helpful, but it is a lot for anyone to take on.  I have 0.0 immunity so if you have even the slightest sniffle, please do not come anywhere near me.

4.  Make a Financial Contribution

I am unable to work and will most likely be unable to work for quite some time.  Not only do I have outrageous medical expenses (even though I have health insurance), but daily living expenses as well.  The doctors estimate that from the time that they find a donor, it will take 4-9 months for the transplant process to be completed.

5.  Pray

I believe in the power of prayer and positive thinking.   I accept this challenge as an opportunity to grow and change and have every intention of making it through this strange adventure that I've been given.

You may email me at fieldofcosmos@gmail.com or ring me at 505.955.9644.  Bless you all.   

Love,

Karen

A Decision Has Been Made

I appreciate all of your comments regarding acceptance and surely there is much to be contemplated and worked on in this area for all of us.  I am touched by your geniune concern as well as the generous donations that many of you have made---whether it be by prayer, by bone marrow test, by financial contribution.   I love and thank you all from the bottom of my heart.

After further and more benign conversations with my doctors today at SCCA, I am coming home to Santa Fe on Friday May 28, 2010.    The SCCA doctors emphasized that they are a bone marrow transplant center and since we were only in the very preliminary part of the search for a donor, my time with them is more or less finished for now.   They are happy to refer me to a hemdoc (ie blood doctor) and an oncologist here in Seattle to administer ATG if that is the route that I would like to take.   While they recommend ATG, they understand where I am coming from and if they find a donor in time and if I am still, in their opinion, strong enough to go through a bone marraw transplant,  they will continue to work with me as my transplant center regardless of my ATG decision.   Or at least that's what I understood from today's conversation.

I spoke with Dr. Scott-Timperly, who was one of my oncologists in Sante Fe, today regarding my return home.   I expressed to her my very real concerns about the toxicity of ATG, given my current second violent reaction to the mild drugs they've been giving me,  and she agreed with me that the decision to take the ATG route should not be taken lightly.   The drugs can kill you, straight up.  When I said the same thing to the doctors here in Seattle, they did not have much of a response.  I expressed to Dr. Scott-Timperly my desire to give alternative healing methods a little more time before I decide whether the ATG route is appropriate for me or not.    She supports me in this decision, knowing that I understand the fully informed implications of my decision.

While I recognize that I am trying to dance between two partners that are perhaps incompatible (ie western and alternative medicine),  I feel perhaps like it is okay to flirt with both.   I'd like to spend the next few months in Santa Fe, hopefully with the support of my friends and family, using Western methods to stay alive (ie blood counts, transfusions, antibiotics as needed) and alternative methods to see if I can begin to turn things around.    There are stories online of many people who chose to go the alternative route and are still alive today.   I am sure there are just as many stories of people who didn't make it and hence have no websites to tell their stories.   I am very clear on this point.

My reality is this:   it's 50-50 either way.   There is a 50% chance a bone marrow transplant will work.  According to my understanding of the ATG literature, it may work for a while or require multiple treatments but is generally not considered a cure.    For very severe Aplastic Anemias, one statistic said that only 45% of people see any results from ATG.   Dr. Doney,  an SCAA doctor who has seen hundreds of AA cases in her career, said she didn't think ATG would work for me.    There are multiple horror and success stories online.

If these are my last few days on the planet, I prefer to have at least tried some alternative methods for a set period of time surrounded by the support of my family and friends.

SO....this brings up the next most logical question which some of you who helped pack me up and put me in storage on Monday are probably asking:  "where will I live?"

I have a place to land initially.  My wish to the Almighty Universe (and to any of you with any ideas) is this:

I would like a quiet, centrally located, extremely clean space--which could sleep two people if I needed someone to spend the night--with a washer/dryer, full kitchen, full bath with tub, dishwasher, preferably no carpet, month-to-month (might as well ask for the ideal) that doesn't cost a small fortune.   

If you know of such a place--or have the time to look for such a place--please let me know what you find.   Probably best to email me your suggestions to fieldofcosmos@gmail.com rather than posting them on the blog.  

Thank you for all of your continued support.   I hope that you will come visit me or walk with me, once I return.   I remind myself often that Challenge is a Blessing and an Opportunity to Learn.   Ultimately, the result is up to God anyway.

My Sunday

Covered from head to foot in hives.   Not as bad as last time for those of you that saw me.   But challenging nonetheless.   Ugg.

My cell phone is acting up.   If you can't contact me, please leave a message and I'll get back to you.

And the computer keeps flashing "dangerously low disk space" at me every three minutes.

If it weren't so darn inconvenient, it'd be hilarious.

Don't forget to check out the blog called "MOVE me" if you can volunteer on Monday then please call Caitlyn.   Thanks.

Blood Type and Bone Marrow Donorship

I am A Rh positive or A+.

I stole this verbatum from http://www.livingdonorsonline.org/marrow/marrow4.htm

Becoming a Donor


Your ability to donate bone marrow or peripheral stem cells depends on whether:

Your blood type and tissue antigens are compatible with the recipient, and
You are healthy enough to withstand the donation process.

To assess your ability to donate, there are several tests you will undergo. The form and timing of the tests will be determined by the donor registry, but here are typical tests:

1. Your Age

The first screen is age; you must be at least 18 but not older than 60 (age 55 for some registries). That is, at the very least you must be an adult to donate. And, research has shown that donations from older adults are less effective, hence a maximum age.

2. Preliminary Blood and Tissue Compatibility

The first step is to determine your blood type and tissue type. Testing is initially done by the swap of your cheek then done by drawing a blood sample. If you are a donor volunteer, these tests are part of the registration process. You pay for the testing, which ranges from $45 to $90. The results are input into the marrow registry and used to make a preliminary match with compatible recipients.

Blood Type. The first test determines your blood type. There are four blood types designated by the presence or absence of two antigens—the A antigen and the B antigen. Blood type A means you have the A antigen. Type B means you have the B antigen. Type AB means you have both antigens. Type O means you have neither antigen.

You must have a blood type compatible with the recipient or you will not be able to donate. Here is who can donate to whom:

Type A can donate to types A and AB.
Type B can donate to types B and AB.
Type AB can donate to type AB.
Type O can donate to types A, B, AB, and O.

Tissue Type. The second test run on the blood sample identifies your human leukocyte antigens (HLA). There are many different kinds of antigens, but there are three categories assessed for marrow donation, designated HLA-A, HLA-B, and HLA-DRB1. You inherit one set of these three antigens from each parent giving you a total of six HLAs.

A similar test is run on a blood sample from the recipient, and the antigens are compared. You might hear of a "six-of-six" match (all donor and recipient antigens match), or a "half match" (three of the six antigens are the same), or a "zero match" (none of the antigens matches). In the case of bone marrow donation, tissue typing is critical, so a perfect "six-of-six" match is required.

3. Detailed Blood and Tissue Compatibility

Once a potential recipient has been matched on a preliminary basis, more detailed compatibility testing is done. Again, a blood sample is drawn from you and tested.

DNA Testing. One test that's done is DNA testing. This testing is similar to the HLA testing but is more detailed. It uses sophisticated laboratory tests to determine the DNA of your antigens and compares the DNA code to those of the recipient.

Crossmatching. Crossmatching is a further testing of antigen compatibility. In this test, white blood cells from you are mixed with blood from the recipient. If the white blood cells are attacked and die, then the crossmatch is "positive," which is a negative as far as your ability to donate. It means the recipient is "sensitized" to you—the recipient has antibodies to some of your antigens—so the recipient's immune system would turn on the donated marrow and destroy it. If the crossmatch is negative, you are compatible with the recipient.

Note: the blood and tissue typing is rigorous because compatibility between the donor and recipient is essential to a successful transplant. As a consequence, many potential donors are ruled out. The odds of two individuals matching range from 1 in 20,000 to 1 in 50,000 depending on such factors as ethnic background. This is the primary reason why unrelated donation is so important.

4. Your General Health

At some point in the screening process, you will have a complete physical exam. You will share your medical history and possibly have a series of tests, such as a chest x-ray, electrocardiogram, blood tests, urine tests, and so on. Female donor candidates may also undergo a gynecological exam and mammography. You will also undergo testing for infectious diseases, such as HIV, hepatitis B, hepatitis C, syphilis, and other diseases. The purpose of the exam is to ensure you don't have any health conditions that would make it difficult for you to endure the donation process or that could result in your infecting the recipient with disease.

5. Other Assessments

Depending on hospital guidelines and transplant team protocol, there may be other assessments, such as psychological and financial reviews:

Donor and collection centers routinely provide an educational session on marrow donation as part of the registration and donation process. During that session you will be counseled about such topics as your ability to remain anonymous (for nondirected donation), the screening requirements, the risks of donation, your rights to withdraw, the impact on potential recipients, insurance coverage, possible subsequent donations, and alternative collection methods. (The content listed here is based on guidelines suggested by the World Marrow Donor Association.) This is an opportunity to ask yourself questions. What are your motives? Is it important to you to know the recipient and for them to know you? Are you committed to donation or were you pressured?

This educational session is an opportunity to explore any concerns you have about donation. Often, the donor or collection center will arrange to give you an out without embarrassment if you decide donation isn't for you.

You may also be asked about financial considerations. The monetary demands of donation are modest by comparison to whole organ donation, but you still need to be aware of the potential financial consequences. Can you afford the cost of the preliminary blood test? Can you get off work for testing, surgery (or apheresis), and recovery? Medical expenses generally are covered by the medical insurance of the recipient. But lost wages are not. What kind of paid sick leave and vacation do you have from your employer? Do you have other financial resources available if you need them? Do you need help raising money?  There are many organizations out there that can help support you if financial resources are available. 

MOVE me--volunteers requested, MORE info on Bone Marrow Donation & Blood Education and My Numbers

There is a group effort, led by Caitlyn McHugh, to pack up my apartment and the yoga studio on MONDAY, MAY 24, 2010.    If you have a little time and know how to pack things in an organized fashion (I am an Iyengar yogi afterall), your help would be appreciated.   Please call in advance to let Caitlyn know that you are coming.

Coordinator:  Caitlyn McHugh
Her phone #:  629-9870
Her email:   qtmcq@earthlink.net

Co-Coordinator:  Helen Chantler
Her email:  helenchantler@yahoo.com

EVENT LOCATIONS
8:30 am at my small apartment
directions:   as you head south on Aqua Fria away from St. Francis, you are looking for two big blue mailboxes on your RIGHT numbered 1717.   My driveway is EXACTLY across the street from these mailboxes (ie on your LEFT).  There is a Caldwell Banker For Sale Sign there.   Follow the bombed out dirt road as it veers to the right.   We are the first compound on the left with a Coyote fence in front.   Call if you get lost.

11 am at the Yoga Studio
address:  1125 Cerrillos Rd at the Oddfellows Hall. on the corner of Railfan Rd.

Caitlyn requested that you ring her in advance if at possible so that she can coordinate more effectively.   The storage locker is on Cordova behind Wild Oats next the the shoe repair shop so it is not a far commute.

Thanks.

MORE Info on Bone Marrow Donation 
For those of you, taking OPTION 1 (see blogs below) and donating straight to me, here is the Clinic Information:


Seattle Cancer Care Alliance
825 Eastlake Ave E
PO Box 19023
Seattle WA 98109-1023

My name is Karen Mauthe. birthday: 11/16/1972 (I'd like to celebrate it with you all this year!)
My doctor until June 6: Dr. Effie Petersdorf.
My doctor after June 6 until July: Dr. Done
My bone marrow coordinator or Certified Search specilist Unrelated Donors: Greg Higgins

Greg's Info: Tele 800.804.8824
                   Fax 206.288.1011
                   email: ghiggins@seattlecca.org

Several of you have asked some really good questions regarding becoming a donor. I will meet with Dr. Petersdorf on Monday and will ask them then. In the meantime, check bonemarrow.org for information. I'm too exhausted to do too much. That said, if you find something good I'll post it.

Such as, Susan's latest email to me:
It is also important to know that there are 2 types of donation procedures. One, as mentioned, is via blood - similar to a blood donation. The other is done with general or local anesthetic while marrow is removed from your pelvis/hip bone. This second procedure is quite safe, but obviously more involved than simply drawing blood. It is not uncommon to have some back pain for a few days after the donation.

Please think long and hard about Option 2 and becoming a registered donor. They really do not want people to register and then opt out when asked to follow through. My respect to all who choose this option.

Option 1 is much more expensive, but you receive the results and therefore will know your marrow "type". This is valuable for many reasons - helping someone in the future AND knowing your own type. Also - I can chose to whom I donate. Something I pondered quite a while on my daily run. There are many ethical questions about saving a life and what it takes to do that. Giving blood saves lives, I've been a regular blood donor ever since I turned 18 - but the process is very routine with close to zero consequences. I chose Option 1.

Blood Education
Every other day it's like gambling...only the stakes are so much higher. I pray that today is the today that my Blood Numbers are going to turn around....that they are going to go in the correct direction towards recovery. Every other day....I hold my breath when I get my numbers. So far they continually decline after I get a transfusion of red blood or platelets. Let's collectively pray that the go the other direction by, say, Monday? I am beginning to show a reaction to the platelet transfusions, which is not a good sign at all. At some point, theoretically, the body will reject the transfusions entirely and then a person is, well, dead. That's the rush on finding a donor!

DATE: 5/21/2010                 MY #s            NORMAL units
WBC white blood cells          0.89                4.3-10 thou/uL
RBC red blood cells                3.9                 3.8-5.0 mil/uL
Hemoglobin                            11.1               11.5-15.5 g/dL
Hematocrit                               32                      36-45%
Platelet Count                           39                 150-400 thou/uL
Neutraphils (immunity)            0.01                 1.8-7.0 thou/uL


The following defnitions were taken verbatum from http://www.medicinenet.com/:

White blood cells are the infection-fighting cells in the blood and are distinct from the red (oxygen-carrying) blood cells known as erythrocytes. There are different types of white blood cells, including neutrophils (polymorphonuclear leukocytes; PMNs), band cells (slightly immature neutrophils), T-type lymphocytes (T cells), B-type lymphocytes (B cells), monocytes, eosinophils, and basophils. All the types of white blood cells are reflected in the white blood cell count.

Red blood cell: The blood cell that carries oxygen.

Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.

The hematocrit is the proportion, by volume, of the blood that consists of red blood cells. The hematocrit (hct) is expressed as a percentage. For example, an hematocrit of 25% means that there are 25 milliliters of red blood cells in 100 milliliters of blood.

Platelet: An irregular, disc-shaped element in the blood that assists in blood clotting. During normal blood clotting, the platelets clump together (aggregate). Although platelets are often classed as blood cells, they are actually fragments of large bone marrow cells called megakaryocytes. Platelet count: The calculated number of platelets in a volume of blood, usually expressed as platelets per cubic millimeter (cmm) of whole blood.

Neutrophil: A type of white blood cell, specifically a form of granulocyte, filled with neutrally-staining granules, tiny sacs of enzymes that help the cell to kill and digest microorganisms it has engulfed by phagocytosis.

MORE IMPORTANT info on Registering to become a Bone Marrow Donor

You might want to let people know some more details in advance.


Option 1 (http://www.bonemarrowtest.com/) is $175 for the standard kit and $375 for the express kit. As you mentioned this is just to be tested, there is no commitment to donate to anyone except Karen.

Option 2 is some cost which depends on how well http://www.marrow.org/ has been treated by donors (in these tough times). Here you join the national registry and commit to donate to anyone that has a need and is a match (you can opt or refuse at any time, but this is clearly not hoped for). I went with option 2. They said that the cost is about $100 for them, they required a minimum of $52 from me to process the test and enroll me. You must be between the ages of 18 and 61.

I realize that all of these costs are insignificant compared to a life, but they are costs, and these are tough times, and people might want to know in advance what to expect.

Send my best wishes (and a hope for a match) to Karen.
Brian Crone

A Holding Pattern

One of my doctors in NM used to quip daily "Boring is good."  That pretty much describes my holding pattern while my infection slowly clears and they begin the search for a bone marrow donor.

I had blood transfusions on Monday and Tuesday and a bag of platelets on Wednesday.   I developped a small reaction to the platelet transfusion--nothing a little benedryl couldn't take care of, but not a good sign.   The more platelet transfusions you get, the more likely your body will begin to react to them eventually to the point of no return.    This is why there is such a rush to find me a donor.    Please read the previous entries which describe how to become a donor and consider doing so as soon as possible.

Today’s medical technology allows testing of potential donors as well as actual transplants with little disruption to the life of the donor(s). Testing is as simple as a swab of the inside of the cheek. Once you have been determined as a match, then you will go through the process of donating marrow.The actual donor process is as simple as giving blood. The donor gives blood from an arm; a machine separates the blood-forming cells and returns the blood to the donor through the other arm.

Wouldn't it be great if it was someone I know who could be my donor?  Or even a friend of a friend?  Or a friend of a friend of a friend?  

More REVISED bone marrow donor info

SORRY FOR THE CAPS. THIS IS WHAT THE IPHONE CAN DO AND I DON'T KNOW HOW TO TURN THEM DOWN!


MORE INFO RE BONE MARROW DONATION:

SOME OF YOU HAVE SAID THAT YOU ARE ONLY WILLING TO DONATE TO ME AND DO NOT WANT TO REGISTER NATIONALLY.   THESE R THE STEPS:

WWW.BONEMARROWTEST.COM.     OR MAYB .ORG I'M NOT SURE AS IM BACK ON IPHONE ENTRY FOR NOW.    PAY $175 AND THEY WILL SEND YOU A KIT.  YOU SWAB YOUR CHEEK, WRITE A NOTE SAYING THAT YOU ONLY WANT TO DONATE TO ME KAREN MAUTHE AT THE FRED HUTCHINSON CANCER RESEARCH CENTER.   THE STANDARD TURN AROUND TIME IS 7-10 BUSINESS DAYS SO IF YOU R WILLING TO DO THIS, PLEASE CONSIDER DOING IT SOONER RATHER THAN LATER.   REMEMBER THAT QUOTE FM THE DR? "60% oF ALL SEVERE APLASIA CASES ARE DEAD WITHIN 4 MONTHS WITHOUT TREATMENT."    ONE MONTH SINCE DIAGNOSIS HAS ALREADY PASSED FOR ME!  YOU CAN CALL THEM AT 877-565-3287 FOR MORE INFO.   TELL THEM TO FAX THE RESULTS TO 206-288-1013 WITH MY NAME.  I KNOW IT'S EXPENSIVE, BUT I WOULD LIKE TO LIVE. STRAIGHT UP.

AND THIS, MY FRIENDS, LEADS ME TO A FEW OTHER THOUGHTS.




 I REALIZE THAT SOME OF YOU MAY NEVER HAVE DEALT WITH A FRIEND OR FAMILY MEMBER IN MY POSITION.   I REALIZE THAT ALOT OF YOU ARE SHAKEN THAT SOMEONE AS DEDICATED TO GOOD HEALTH COULD HAVE SUCH A CIRCUMSTANCE BEFALL THEM.   IT UPSETS EVERYONES SENSE OF WELL BEING.   WHILE I CAN'T TELL YOU HOW MUCH I APPRECIATE YOUR SWEET NOTES OF SUPPORT AND LOVE, I FEEL LIKE I MUST SAY SOMETHING DIRECTED ONLY TO A FEW OF YOU BUT I WOULD LIKE TO SAY IT PUBLICLY AND ALL AT ONCE.


I AM DEDICATED TO ALTERNATIVE THERAPIES IN EVERY SENSE. I HAVE WRITTEN BKS AND GEETA IYENGAR LETTERS ASKING FOR GUIDANCE IN MY PRACTICE. I AM WORKING WITH A NATRAPATH IN BC WHO WAS VERY UPFRONT ABOUT MY SITUATION.  THE NUMBER ONE THING, HE SAID, IS SURVIVE! WHICH PRETTY MUCH MEANS THAT I SHOULD DO EXACTLY WHAT THE EXPERTS AT FRED HUTCH SAY.   MY FRIEND WHO IS THE HERBALIST AT DR LADS ARYUVEDIC SCHOOL SAYS THE SAME THING. THE CHINESE HERBALIST I SAW LAST WEEK SAID THE SAME THING.  THE ESSENTIAL OILS EXPERT, WELL HE SEEMS A BIT MORE FLAKEY IF I'M REALLY HONEST WITH MYSELF, SAYS THE OILS CAN CURE IT.  DEAR SWEET CAMILLE COATES INVESTED ON MY BEHALF IN HIS ADVICE AND I RUB RIDICULOUSLY EXPENSIVE OILS INTO MY FEET AND LIVER EVERY NIGHT BEFORE BED.    I AM TAKING SUPPLEMENTS AND HERBS AND HOMEOPATHIC REMEDIES.   I JUST GAVE A COMPLETE LIST OF EVRYTHING I'M INGESTING TO THE FRED HUTCH PHARMACIST SO THAT SHE COULD CHECK TO MAKE SURE I'M NOT BAD DRUG/HERB COMBINING.   I MEDITATE, STARE AT CANDLES, BREATH, IMAGINE WHITE LIGHT HEALING MY BODY. IM COVERING ALL MY BASES AS BEST I CAN.


THAT SAID WHILE I APPRECIATE YOUR OFFERS OF REMOTE ENERGY HEALING SESSIONS WITH PEOPLE WITH NAMES LIKE ANATASIA WHO CAN'T QUITE SEEM TO GET IT TOGETHER WHEN I SPOKE TO HER, I MIGHT SUGGEST THAT THE BONE MARROW TEST MIGHT BE A BETTER USE OF YOUR CASH.  SAYING THINGS LIKE "THANK YOU SO MUCH FOR TAKING SUCH GOOD CARE OF YOURSELF" WHILE I'M GETTING A BLOOD TRANSFUSION SO THAT I CAN CONTINUE TO LIVE---WELL IT'S NICE BUT IT DOESN'T MAKE ME FEEL SUPPORTED IN A REAL WAY.  I WANT TO THANK ALL OF YOU WHO HAVE BEEN REAL WITH YOUR SUPPORT. IT HELPS ME THROUGH MY DAY WHEN YOU SAY "I'M SORRY YOU ARE GOING THROUGH THIS AND WHAT CAN I DO TO HELP?"  AT THE MOMENT MY ANSWER TO THAT QUESTION IS, PLEASE CONSIDER A BONE MARROW TEST IN MY NAME.


BUT THERE WILL BE OTHER WAYS TO HELP ALSO.  I MOVED INTO MY OWN STUDIO APARTMENT CLOSE TO THE CLINIC ON MONDAY.   THE PLACE IS FOR FRED HUTCH PATIENTS--A QUIET COMMUNITY OF BONE MARROW TRANSPLANTEES.  I AM APPLYING FOR FINANCIAL AIDE--tHE RENT IS $1550 PER MONTH W PARKING.  A FRIEND OF MINE IS LOOKING INTO A DONATE PAYPAL BUTTON FOR THE BLOG AND I'M AFRAID I HAVE BEEN LAX IN MY DUTIES TO MAKE THIS HAPPEN SOONER.  BUT IT IS COMING.  I AM ALSO LOOKING INTO PAID AFTER TRANSPLANT CARE SO THAT THOSE OF YOU WHO HAVE OFFERED TO COME CAN BE FRIENDLY SUPPORT RATHER THAN PRIMARY CARE. THIS IS THE VERY REAL SITUATION I AM FACING.  FOR THOSE OF YOU THAT HAVE OFFERED TO COME HELP PLEASE DO NOT TAKE MY SEARCH FOR PROFESSIONAL HELP AS ANYTHING BUT AN EFFORT TO REDUCE MY DEPENDENCY UPON YOU IF YOU CHOSE TO COME.  I UNDERSTAND THAT THE BONE MARROW TRANSPLANT IS PRETTY INTENSE AND SKILLED NURSING IS NOT A BAD IDEA ALBEIT PRICEY.


MY NEW MAILING ADDRESS IS:
KAREN MAUTHE
525 MINOR AVE NORTH #608
SEATTLE, WA 98109
mY FAX: 206-262-9246
MY LAND LINE: 206-262-9063


THANK YOU ALL FOR YOUR KINDNESS AND SUPPORT.


"...THE KINDS OF AWAKENINGS:  AWAKENING FROM THE DREAM OF ORDINARY SLEEP, AWAKENING AT DEATH FROM THE DREAM OF LIFE, AND AWAKENING INTO FULL ENLIGHTENMENT FROM THE DREAM OF DELUSION."   PEMAPENA CHODRONCHODRONE

How to Become a Bone Marrow Donor

This will tell you how to become a bone marrow donor:

http://www.marrow.org/JOIN/Join_Now/join_now.html

If you can't save me, you might be able to save someone else!   They formally registered me on Friday and it apparently takes them anywhere from one to three months on average to find a match.   If you're interested in seeing if you can match me, then please fill out their form and do what they say as soon as possible.

Don't worry....if you change your mind later, you can always decline the offer if you are selected.

Thanks for asking, those of you that have.

The Latest Doctor Update

I've slept most of the day, exhausted from a very busy week indeed.   Those hospital folks keep you on a tight schedule!    I finally couldn't stand the smell of the bedsheets anymore (due to the night sweats) and so I'm up as the sheets are being washed and dried.

I went on a walk at the nearby trail near Richard's house.   I have a yellow fluffy cat friend who meets me on the trail walks about 10 yards with me, plops himself down in the sun to wait for my return, then he'll walk back to whence he began with me.   It's a kind of casual saunter and I think that the two of us enjoy the company.     While some days, it's a struggle to motivate....walking outside I think is a key component to healing and I don't really care how strange I look as I swing my arms around or take a paschima namaskarasana or an arm gomakonasana as I slowly walk down the trail.   What I notice the most is the speed at which most people are moving.   Everyone seems to be pushing themselves....walking fast, jogging, bicycling....we are a perhaps a culture of speed freaks (myself formally included).   This illness has slowed me WAY down and I look at it as God's gift to literally stop and smell the roses (though I have to do it from a distance cause my neutrophenia requires distance from plants).

Yesterday, my blood count was low again---which was no great surprise to me as I have noticed that I get the blank tv sound buzz in my head when my blood is low.    So yesterday evening I got another platelet transfusion and am feeling a bit better.

The serious conversation with Dr. Done went as expected I suppose.   She was my admitting doctor who talked to the Santa Fe doctors and will be my doctor in June.  (They switch off one month at a time).     What amazes me the most about the doctors I've dealt with at the Fred Hutchinson clinic is their amazing directness, clarity, and communication skills.    They are, in some sense, better yogis than a lot of people I know.   They look you in the eye and they tell it how it is.

Dr. Done has been at Fred Hutch (as everyone here calls it) for years and has had 100s of cases of Aplasia (short cut for Aplastic Anemia) unlike most doctors who might encounter one or two cases in their entire careers.    She is in her mid-fifties to early sixties and one gets the feeling that she is one tough cookie whose been around the block a few times.   I am pleased that she will be the attending doctor in June.

So here's the deal:
1. I fall into the VERY severe aplasia category.  "Your bone marrow is basically empty."
2.  They can't start any kind of treatment until my infections clear up which might take up two weeks or more since I have almost no white blood cells.   I am on the big BLUE horse pills of very high intensity to clear the infection in addition to hormones for the bleeding to stop and antiboitics of various colors and flavors.   For someone who never liked to take pills, boy the irony is obvious.   And this, she assured me, was just the beginning in the pill department.
3.   In her opinion, ATG is unlikely to work for me due to severity of my aplasia.    It takes time for the cells to grow and I have such few cells that she doesn't think that it will work.
4.  It takes about 3 months to see if ATG will work.
5. "60% of severe aplasia cases are dead within 4 months without treatment"
6.  If she were me (I asked the question),
  a.  she would formally register in the bone marrow donor worldwide database immediately.   (My response was:  WHAT?  I'm not already registered)
  b.  she would call the bank and find out, based on my tissue type, how long they think it might take to find a donor.   The other doctor suggested that I have a common tissue type.
  c.   the ATG treatment before a non-donor transplant is the prescribed standard of care that the hospital generally recommends.
  d.   i am an unusual case (of course) due to my recent exposure to hep a and here's the kicker elevated levels of lead (for certain) and possibly arsenic and gold most likely from the aryuvedic pills I took in India (read this as a warning people).   They know for certain that gold can cause aplasia.   The arsenic and gold tests should be back soon.
 e.   if the bone marrow bank thinks that they can find a donor soon, then i might just skip the ATG part....if the team of doctors that meet next Wednesday agree.    She was very clear here....while everyone tries to remain unbiased in their recommendations, there is always bias and if they are going to think "outside of the box" with regards to my case, they prefer team consensus.     I'm all for that.  Call them all in, as far as I'm concerned.
f.   they prefer me to stay out of the hospital as much as possible, but if I need to be there, they will admit me.

So it's a bit more waiting it would seem.   This is both a blessing and a curse.    I still hope that the essential oil regimen I'm on will kick in any day now.   I still have at least 10 more days for miraculous healing to occur.   The option at the end of the tunnel is, well, not very rosy at all.

Somebody asked me about my strength today.   My physical strength varies with my blood levels.  My inner strength mostly remains consisitantly strong.   I want to live.    The person responded "If you can maintain inner strength, you must be truly amazing."   My response is this:  when you are in my shoes, there is not much else besides acceptance and a healthy dose of pragmatism.

BKS Iyengar was kind enough to email me regarding a sequence question I asked him.  Beyond the technical practice information, he wrote:

"As you are afflicted you have to accept this with calm mind and work on alternative means to improve. You may have to stick to yogic discipline as well as take the support of modern medicine. Yoga does nullify the bad effects of drugs. So stick to practice."

More pragmatism. 

My address will be changing in the very near future so please do not use Richard Schachtel's address or contact information from this point forward.   I'll let you know what the new info is as soon as I confirm it.

Thank you all for your continued support and God Bless.

Better today

It's a whirlwind.  Days seem to fly by.


The Infectious Disease doctor had a different opinion on the the infected absess.   I am now hopefully on the right drugs to clear up the problem.

I will meet with the housing department at the clinic tomorrow.   My place to stay expires June 1.  I am so thankful to Richard for offering me such a safe and lovely landing pad here in Seattle.   His support and generousity has been above and beyond the call of duty.   I will also investigate hospice and full-time care options.

Tomorrow they will check my blood again in the morning.  Then I will meet with the new-lead-doctor-for-this-week regarding the very serious choices of treatment.   We are still waiting for test results and I doubt that they will begin any kind of treatment while this infection continues. 

Thank you all for your continued support.

One Damn Hard Day

I started bleeding again yesterday afternoon.   By 2 am, I was gushing complete with blood clots, dizziness and a fairly healthy dose of fear.  By 4:30 am, I called my new friend Emily, a twenty-five year old yoga teacher-in-training friend of Richard's who I met on Monday.    She arrived at the house by 5am and spent the greater part of her day helping me.

By 9:30 am, I gave blood at the clinic to check my numbers.  By 10 am,  I received a bag of blood.  By 11:30 am, my doctors came down to see me in the transfusion lab to tell me that so far what bone marrow results they have confirm aplastic anemia.  By 2:30pm,  I drank a 1/2 gallon of dye.   By 3:30 pm,   I had my first ct scan.   By 4:30 pm, I met with the obgyn who confirmed that my piles were not just piles....but rather an infected absess.    By 6pm, I picked up my last prescription of the day.   By 6:30pm, I sat in the tub and ate for the first time since 8am (unless you count a few cookies after the ct scan).   By 9:30 pm,  I got the call that said I need to go to the hospital right now to get an iv of antibiotics.   All I can say is that I sure hope I don't react to this dose.

The time for me needing 24/7 care is approaching fast.   If you have time in the near future, please let me know at fieldofcosmos@gmail.com.   I will try to put together a schedule.   I have miles for a few plane tickets and my car is here for your use.   We have a private bedroom for your use that is next to mine upstairs.   We have our own bathroom.   I'm happy to buy the food.       I am pretty easy except for needing someone around in case I fall, or need to eat or need yet another ride to the clinic.

Richard and Emily cannot do it all.   I should know more in the next few days regarding the timing of things.   I'm not sure when exactly 24/7 will need to begin but if you email your dates, I at least have options.

God Bless you all.

Courage

Someone thanked me today for my courage.    I appreciate the compliment, but I would be mistaken to accept it quietly.   It simply isn't true.

Courage is when someone runs into a burning house to save a child.    Or when someone runs into a battlefield to protect his home, his country, his people.    Or when someone gives up a kidney to save a loved one.  It involves a choice to put oneself at risk to save another.

That is not my situation.    I have had no choice.    My platelet count was 4 today (300 normal).   I had to return to the hospital this evening for a platelet transfusion so that I can stay alive.   There is no choice involved.

There are moments when I feel like standing up in a crowd and shouting at the top of my lungs "This is not FAIR!"    There are moments when I find myself judging other patients who have obviously not made the same healthy choices that I have in my life.    There are moments when I weep.

There was no choice in my situation--thus no courage.   There is a lesson in acceptance and there may be perspective.

Perspective that we should cherish every single moment, every single blade of grass, every single note of our favorite song.   Perspective that we should cherish each other, let bygones be bygones and let love guide us.   Perspective that we should banish every single negative thought that dares to enter our consciousness, that time is precious and that there is no time for negativity.

Are we making peace or war with every single moment of our lives?   This is the question that takes courage for each of us to answer to noone but ourselves.

Reflections

the plum tree wants to produce plums
the rolly polly wants to keep walking rather than rolling himself up in a ball
the purple flowers next the Richard's steps where the morning sun shines want to bloom

the sun shines regardless of how we are feeling.  thank God.

Important Lessons Learned Over the Past Three Weeks

Ok.  It's time.  More than just the bare minimum entry.   Read at your own risk.

These are the most important lessons I've learned over the past few weeks.
1.  Honesty is the best policy.  Humility is key.

2.  Let bygones be bygones.  Whatever anyone did to piss you off, let it go.   Stephan Stills had it right: "Love the one your with" might just be one of the world's most important truths.

3.  Watch out for Essential Oils.  They might just be more powerful than you think.

4.   When the nurse asks "what is your method of contraception?," you are apt to bring laughs to the room if you quip "abstinence, unless a vibrator counts?"   Making people laugh through this ordeal helps the situation somehow.

5.  Some antibiotics have fun side effects like hives or here's a good one: leukemia.    There's a list somewhere on the internet listing the bad boys and the not so bad boys.   I'll post this info when Helen finds it again (thanks Helen).

HIVES & RASH TREATMENTS that WORK and DON'T WORK
a.  Aloe Vera Gel out of a bottle is NOT the same as fresh aloe vera straight from the plant.  Citric acid as a preservative does not make rashes happy.
b.  Aloe Vera Gel will initially HEAT the rash up, thus making it more itchy and red before it cools it down.   If you are into hard core S&M, then try it....otherwise I might skip this in the future.
c.   Rubbing handfuls of cool Oatmeal in a lukewarm shower will help heal your skin, but not your drain.
d.   Calendula cream or gel has seemingly limited results....will not help the itch but supposively will help heal the skin.  I am not personally convinced.
e.   Covering your clean body in a thick layer of cornstarch will cool the skin and give some relief for several hours until you begin to feel like a cake and then need the sheets changed.   Beware:  it make your room reminiscent of a 1970's cocaine party...powder everywhere!
f.     This one is very IMPORTANT:   fresh cilantro leaves crushed in your blender with very little water is a LIFESAVER!    Get gauze.  Put it over your rash (and liver),  add freshly mashed cilantro on top, put another layer of gauze on top.    It's amazing.  It will pull out the heat from the body.   Note to self: Be ready to sacrifice your sheets to the cause, but this is a small price to pay for nearly instant relief.

6.  Piles are NO joke.   The boxes on the various ointments say different things.   One says 1/5 of all adults experience these sometime in their life.   Another box claims 3/4 of Americans have them.    The part that I can't get over is that somewhere between 1/5 and 3/4 of you people are walking around with these things looking normal.   How is this??   I'm either much more sensitive than the average person or have a lot less grace--most likely both--but I can't walk or sit properly to save my life right now!

PILES TREATMENTS that WORK and DON'T Work
a.  Tucks ointment cream.  Forget it.  Waste of time.  Prep H?  Petroleum AND shark liver?  WHAT?  It made things worse. Skip it.
b.  Tucks witch hazel whips.   Kinda cools for about a minute.  I'd give them a 2 out of 5 stars.   Better than nothing.
c.  Tumeric mixed with Sesame Oil.  (Note to self: the Internet lies)  AGGHHHH!   Sesame Oil is heating.   Big mistake.  Don't do it. Plus even after you have wiped the area clean again, even bathed, for up to two days later Tumeric will continue to stain your undies.   Note to Self:  tumeric does not come out of undies or sheets.    Oh and here's a fun side effect:  you get to tell your nurse as she's taking a urine sample that they might find an increased amount of tumeric in the sample.   Puzzled looks ensure, though the humor aspect cannot be underestimated.
d.  Warm Epson Salt baths actually provide the most relief.   Baddha Konasana is reported to have the same effect.   So the frequent combo of Baddha Konasana in a warm Epson Salt bath has seemed like a pretty good idea to me.   Many of you are getting return phone calls while I'm here.  Sorry if you hear the water running.
e.  Castor oil seems to help soften the area effectively.   My Ayurvedic friend suggested tumeric again, but I just couldn't go there again.
f.   One tablespoon of wheat germ a day is supposed to help.   I'm on my second tablespoon now--in fact as we speak--so I'll have to let you know.
g.  Why not add organic prunes to all the grains you cook?   "Just don't overdo" that is the warning from my nurse Georgina.

7.   My car is being trucked here scheduled to arrive on Monday courtesy of Doug Lawerence.   Emily Budziak has also gone above and beyond in helping me with all the details.   Candy Jacobson's support has been unsurmounted.   Please thank them all if you see them.

8.  My friend, Richard Schachtel is a superior human being.   He has given me a place to live.   He has offered a spare room for any of you that are willing to volunteer when and if the going gets tough later in my treatment.  He has taken me to all of my appointments and been there with me.   He has been to the pharmacy and the grocery store with various strange requests about a million times since I got here.    If you have the time, please send him a thank you card.  (And this is also my Seattle address for now)

Richard Schachtel
9209 49th Ave NE
Seattle, WA 98115
rschachtel747@gmail.com

THANK YOU ALL FOR YOUR CONTINUED SUPPORT.   If I don't ring you back right away, please know that I'll eventually get around to it as my energy allows.

I Met the LIME lead Dr. Petersdorf

Dr. Petersdorf, an adorable middle-aged Chinese woman with hip glasses sliding off of her nose, softly yet competently explained the situation to me yesterday.

Straight up:  They don't know what's causing the dysfunction of my bone marrow.  

What they do know:  

1.  I have a common tissue type so if a bone marrow transplant is ultimately decided as my fate, there will likely be a donor somewhere in the world.   They also know that non-donor matches have a 50% or less percentage of working.    Had my brother been a match, I would have had a 70% chance of success.

2.  Some of the labwork finally came back.   They only had 3 bone marrow cells to analyze (which is not enough to diagnosis conclusively).   The chromosomes in all three cells appeared normal--an indication of Aplastic Anemia.    If the chromosomes were abnormal, then it might indicate Leukemia or something else like that.

3.  They are going to call in all the specialists:  the chromosome people, the cancer people, the infectious disease teams, the hemo doctors.   I, apparently, am going to be a Fred Hutchinson multi-team project.
We will most likely not have a diagnosis or treatment plan for up to three weeks.

What they want to know:

What Ayurvedic pills I took in India.   We called and texted my Ayurvedic Doctor in India this morning requesting samples as well as the names of both the pills and herbs he prescribed.    Because his English is not so great, we called and emailed my former landlord, Neena Shahani, who speaks fabulous English, to ask her to ensure that he understood our request and the importance of receiving this package as soon as possible.  

Today:

I have a bone marrow aspiration at 3pm.   We are starting over from scratch.  We are praying that there's more cells in the marrow than the last time.

 

Unfortunately ...

Karen's brother is not a match.

Fred Hutchinson Cancer Research Center

Yesterday was my first appointment with my nurses.   I'm part of the LIME team.   The center was hip, clean, busy and extremely well-organized.   One got the feeling:  Bone Marrow Transplant?  No big deal.  0.0 Immunity?  No problem.   We have lots of patients with that.

They drew my blood.  Interviewed me.  Examined me.  Educated me.  Made several appointments for me. As expected, they still have to run more tests on me.   Today I meet my LIME team doctor.   Tomorrow I have another bone marrow aspiration.   In a few more days, I will have their diagnosis.   Easy in.  Easy out.

In the meantime, I have decided to have a yoga marathon day today.   Now that I'm not quite so exhausted from the traveling, I am inspired to practice as much as I can today.   Pranayama.   Mild supported backbends.   Supported Inversions.   Twists.   Every liver releasing pose I can think of in hopes that my bone marrow will revive before the tests tomorrow.    

Om. Shanti. Shanti. Shantih.  Hare Om.

If there's any possibilty for enlightenment, it's right now, not at some future time. Now is the time.

I made it to Seattle where I have my initial consultation at the Fred Hutchinson Center this morning. They expect it to b a 5 hr interview! Yesterday when I arrived I met with Dr. Chan, a Chinese doctor and natropath who used to work at the Fred Hutchinson Center. He was the first person to explain to me what's going on: in short a combination of poor genetics, a too strong immune system due to my healthy habits and exposure to Hep A all combined to make me a 1:2 million candidate for rapid onset aplastic anemia. He's very practical.... he told me to ask to be admitted to the hospital today, a necessary component to protect me from infection with my 0.0 immunity, told me to keep taking the antibiotics, emphasized that survival is the number one component here, and gave me a myriad of good questions to ask while educating myself re the disease. Because he lives in BC and is not licensed here, I will only be able to see him occasionally....he drove all the way from Vancouver
yesterday just to see me.

Let's hope the hospital and my insurance company will do the right thing and admit me soon!

Hope u all r well!

Love,
Karen

If there's any possibility for enlightenment, it's right now, not at some future time. Now is the time.
Pema Chodron

SEATTLE!!

In short ... Karen is in Seattle ... yes, it's for real.  After several days of getting on the phone and advocating for herself on all sides, she successfully coordinated the move.  I'll have to say, it was very impressive.  It took a good deal of perseverance and logistics ... calling, recalling, telling, retelling, explaining, insisting, waiting, even a little crying.  And, a good deal of packing and moving and tying up loose ends, and overcoming several Mercury retrogrades ... losing keys and masks and prescriptions, and even a plane delay; but she is safe and sound, and hopefully getting some much needed rest after the journey. Tomorrow she will be meeting with her doctor at the Fred Hutchinson Center to discuss the next steps.  Send good thoughts and prayers ... as many and as big as you can possibly muster!

From Karen on Saturday

It looks like I will be flying to Seattle either Monday or Tuesday of next week. The insurance company will approve my transfer if the hospital pre-admits me AND the hospital will admit me if the insurance company approves the transfer. Classic. My nurse is so irate over the fact that this game has been going on for over a week when I have a potentially fatal disease that she is going to write Obama a letter.
I got a platelet transfusion yesterday and agreed to pop their pills in hopes that the horrific red and purple welts all over my body from a reaction to their antibiotics would subside. I've also been practicing mild twists and nadi Shona, which is a cooling breath for the body. While I am still pasted from head to foot in cornstarch, which seems to cool the skin, I am feeling a bit better today. One blessing at a time.
Again I want to thank you all for your ongoing love and support.

Love, Karen

Yoga Blocks -- come and get 'em, while they last!

The good news is that Karen's insurance company has agreed to her receiving treatment in Seattle ... contingent upon the center pre-admitting her. It sounds like the contingency is routine, and they should make their decision over the weekend. Yay.


And, tada!, just in time for needing to purchase the airline ticket ... Karen is offering the hand carved wooden yoga blocks for sale right here on the blog! All Karen's students have intimate experience with these German wonder blocks, and know how indispensable they are. Only $175 each! Three incredible varieties. Get yours before they are gone! (cash is the best). Call fast!