At the beginning of this month, my family and I had a meeting with the VCU bone marrow transplant team , and since then I've gotten about 20 pounds of literature about the whole process, from soup to nuts. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I've gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it's the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it's return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. BMT is not a cure for AML; I've got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them's the facts, and I've got to put on my big girl panties and take my medicine.

The best metaphor I could think of for a bone marrow transplant is from Ender's Game. It's like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.

See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I'll probably end up looking like Miss Hiroshima 1945.

Once the site has been thoroughly nuked from orbit, just to be safe, I'll get my transplant. It'll go down a lot like a regular blood transfusion. From there it's a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I'm at risk for rejection. My new immune system will more than likely attack it's new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks. From what I've read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.

This stint in the hospital will take a month at least, if I don't develop serious complications from the transplant that would necessitate a longer stay. I'll be able to have visitors, just no sick ones. I'll be completely confined to my room. In other words, the best four weeks of my life.

Once I'm deemed okay enough to go home, I'll need a full-time caregiver. For the first few months, I'll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no "dirty" chores, no contact with the cats, no cooking that involves raw foods. I'll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I've got to mask up.

This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I'll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I'll need to get all of my baby vaccines again.

For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won't get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)

This is the giant white wall that has been thrown down into my path. I can't see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.

At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.

But I'm gonna get there. I'm heading for the morning sun.

I will participating in raising money for the society with my older sister, Michele.  We both are non-athletic types and I want to record our progress to encourage others to participate and hopefully raise money that will continue what was started in 1988 until a cure is found.

Our Honored Hero for our chapter is Michael Font.  He is 20 years old and was diagnosed with Acute Lymphoblastic Leukemia in 2006 after graduating high school.

My sister and I will also will be running in honor of our maternal grandmother, Mary Newton, who died from Leukemia shortly after giving birth to our mother.

I look forward to our journey together.  Please share any tips you have with running and training.  If you have any comments please share along the way.

All the Best,

Dara

By NICHOLAS WADE

Eugene A. Foster, a pathologist who helped establish genetically the long-alleged liaison between Thomas Jefferson, the third president of the United States, and his slave mistress Sally Hemings, died July 21 in Charlottesville, Va. He was 81.

His death followed a long bout with prostate cancer and leukemia, his wife, Jane Foster, said.

Dr. Foster spent most of his career at the University of Virginia Medical School and at the New England Medical Center at Tufts University. It was only after his retirement and return to Charlottesville that he burst into the public eye with his project on Jefferson.

As early as 1802, the second year of his first term, Jefferson was accused in an article in The Richmond Recorder of having fathered a family with Hemings, a slave on his estate. Such an affair was denied, Jefferson's family later spreading the story that any physical resemblance between the president and the slave children could more probably be laid at the door of his young nephews Peter and Samuel Carr.

A long line of Jefferson historians, most recently Joseph Ellis, had concluded that an affair was unthinkable.

"After five years mulling over the huge cache of evidence that does exist on the thought and character of the historical Jefferson, I have concluded that the likelihood of a liaison with Sally Hemings is remote," Mr. Ellis wrote in 1996.

The following year, Annette Gordon-Reed, a black lawyer, sized up the same evidence and reached the opposite conclusion: a liaison was very likely, although it could not be proved, Ms. Gordon-Reed wrote in her book "Thomas Jefferson and Sally Hemings: An American Controversy."

Dr. Foster played a remarkable role in helping substantiate this challenge to the consensus view. He had resumed a project to test whether Jefferson was the father of Hemings's children, after hearing of a new genetic technique of tracing ancestry through the Y chromosome, which descends through the male line.

Jefferson had no male descendants, but blood samples from five descendants of his uncle, Field Jefferson, provided Dr. Foster with the authentic Jefferson Y chromosome. He also tested descendants of the Carrs and of Hemings's son Eston.

Dr. Foster found in 1998 that the Jefferson Y chromosome differed from that of the Carr family, but was identical to that of Eston Hemings's lineage.

His report was a model of scientific caution, saying that he could not rule out the possibility a Jefferson other than Thomas was the father of Eston.

But that seemed unlikely, he said, after taking account of all the historical evidence, which included Jefferson's recorded presence at Monticello at the conception of all Hemings's known children, a fact noted by the historian Winthrop Jordan.

Dr. Foster's report, Ms. Gordon-Reed said, "was an enormous boost to my book," because it ruled out the Carrs, the historians' favorite candidates as fathers of the Hemings children. The report, and her study, "helped change the consensus on the Jefferson and Hemings story, from a belief it could not possibly have happened to a belief that it did happen," she said.

Dr. Ellis was one historian who admitted error and said he had changed his mind in light of the new evidence.

The consensus was not achieved without some attacks on Dr. Foster's findings. But he took them "pretty much in stride." Ms. Gordon-Reed said.

Besides his wife, Dr. Foster is survived by three children, Susannah Baxendale of Culver City, Calif.; Ethan Foster of Sedona, Ariz., and Rebecca Foster of Charlottesville; and a brother, Roger Foster of Long Beach, N.Y.

In a 1998 interview about the Jefferson case, Dr. Foster expressed surprise that people had so willingly let him take specimens of their blood.

"The whole business has been a coming together of improbable events," he said.

New York Times

I started out joining Team in Training just for the amazing personal training they give so you can go from a non-athlete to a marathon runner.  My initial goals were all about getting into shape.

But it very quickly became a personal mission for me.   As hard as training for a marathon is, it's also hard to raise money for any reason.  With Team in Training, you raise money to fight leukemia and to support the patients.  There's no other way.  If we don't do it, who will?

So this is my Why.

Why I Run For Love

1.  You cannot imagine the heartbreak to sit with a friend who has already lost one child to leukemia and now has learned that her adult son, his brother, has it.  I held my friend Jan many times as she cried her heart out over her son Russ' condition.  So I run so that my dear friend doesn't have to lose another son to this cancer.

2.  I had a dear roommate in college who, at the age of 26, was already a widow.  Her husband had died some months earlier of non-Hodgkins' lymphoma.  As a Christmas gift to her, I went through their journals and letters and wrote sort of a "life love story" for her.  I came to love her husband so completely and to cherish her love for him.  So I run out of honor and respect for a beloved husband lost.

3.  My 80-year-old aunt is the late-life love of my Uncle LeRoy.  They married after each had raised a family.  When I went home for a family wedding two months ago, I had forgotten various things and she was so kind as to insist that on the way to the wedding (two hours away), we make time to stop in the "nice stores" to pick up my cosmetics and things.  She was so lovely and gracious about the hassle and delays, and so kind to listen to my marathon training stories and all.  And then she told me she had just been diagnosed with Chronic Lymphocytic Leukemia.  I couldn't believe it!  So I run for my beautiful Aunt Donna.

4.  There is another Donna in my life, the receptionist at my veterinary clinic.  This is no casual relationship, I do animal rescue and sometimes "live" in the clinic!  I take the staff out to ice cream on Tuesdays.  Donna recently underwent breast cancer surgery and invited me to a fundraiser event to fight breast cancer.  But you know what?  She is a Hodgkins' disease survivor, as well.  Donna is so dear to me, I would do anything for her.  She survived due to amazing advances in fighting blood cancers.  I run so Donna can continue to survive her cancers and grace us with her kindness and friendship.

5.  There is a sweet, sweet little boy, Mason, the five-year-old son of one of the people in my marathon group.  His mom, Catherine, and his dad, have run with Team in Training for a couple of years.  Mason was diagnosed when he was only three and they thought it was in remission, but had an unlovely Christmas present last year.  Mason's leukemia was back.  So he is on a 100-week weekly chemotherapy regimen.  He loves to hear how many miles people have run for him.  I've never met him but I have become immersed in his story and in praying for him.  In fact, I can do more than pray.  I can go through the doors that God has opened and run for him and raise money to fight this disease so that there is no chance of him not making it the 100 weeks.  I run so Mighty Mason can outrun us all.

7.  I love each member of my family and my friends and my co-workers.   I think it's highly likely that someone in my circle will be diagnosed with a blood cancer.  At that point, they will need a cure, and we are so close.  Of all the cancers, doctors and researchers believe we are just within a few years of a complete cure.  I run so that, when the day of sad crisis arrives, we will have that cure.

I always say that I go through the doors the Lord opens.  This business of running a marathon is SO unbelievable, so far out of where I've ever been in my life, so hard, so in need of an inner commitment, that it HAS to be from God.   If He opened this particular door, for me, at this time in my life, I'm RUNNING right through it!

Drew Lane will be calling into WDFN around 10:30am tomorrow morning! Stoney and Wojo are hosting their annual Leukemia and lymphoma radio telethon. I will post the audio as soon as it happenes.

UPDATE - July 25, 2008:

Drew is on the air right now at WDFN - Drew Lane all but said Mr. Skin will probably not be his co-host. He implied, he would love to work with Skin, but it doesn't look like it will be work out.  Audio will be coming soon...

UPDATE - July 25, 2008:

Here is the audio. Drew covers a lot in the twenty minutes from Cops, to the Mayor.
[audio http://www.archive.org/download/DrewlaneCallsInToWdfn/DrewLane.mp3]

-download mp3-

Here is the best true story on giving I know, and it was told by Jack Kornfield of the Spirit Rock Meditation Center in Woodacre. An eight-year-old boy had a younger sister who was dying of leukemia, and he was told that without a blood transfusion she would die. His parents explained to him that his blood was probably compatible with hers, and if so, he could be the blood donor. They asked him if they could test his blood. He said sure. So they did and it was a good match. Then they asked if he would give his sister a pint of blood, that it could be her only chance of living. He said he would have to think about it overnight.

The next day he went to his parents and said he was willing to donate the blood. So they took him to the hospital where he was put on a gurney beside his six-year-old sister. Both of them were hooked up to IVs. A nurse withdrew a pint of blood from the boy, which was then put in the girl’s IV. The boy lay on his gurney in silence while the blood dripped into his sister, until the doctor came over to see how he was doing. Then the boy opened his eyes and asked, “How soon until I start to die?”

Bright Happy Power (BHP) is actively identifying other programs around the world that are addressing the needs of children with cancer. Through the network of people who maintained a constant awareness of Jessie while she was alive (over 187,000 visitors to the blog as of last week), and the--unfortunately--ever increasing list of people new to the cancer challenge coming into Children's and the Joslin Center in Boston, BHP is directing funds and materials to those programs. If you have an interest in learning what you can do for children and their parents who are focused on this daily battle, click here and make a few additions to your next trip to the grocery store, Walmart or Target.

Please pass this on, you have people in your address book who are looking for a way to help others. No, I haven't been looking at your address book, it's human nature to do good for others. Thanks for anything and everything you do to support Bright Happy Power.

Stephen
-- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- --

"There are two primary choices in life:
to accept conditions as they exist, or
accept the responsibility for changing them."
-- Dr. Denis Waitley
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Russ at the right with his wife and daughters and parents.  Jan, in the scooter, is my dear friend.  Look at her smile, that's sooooo worth it!   That's me kneeling on the front left.

We had a fundraiser tonight at Sweet Tomatoes that went STUPENDOUSLY.  The email invitation went viral.  We not only had people from my church and work and team in training group, but people I didn't even know!  Strangers printed out the flyer and distributed it at work, sent it on via email.  One of Russ' neighbors sent the invitation to her kids soccer teams!

It was so exciting to see people come through the cash register with their Team in Training flyers.  For every purchase with a flyer, Leukemia and Lymphoma Society gets 15% of the sale.  There were piles and piles of flyers, I think there had to be at least 100 or maybe 150 people there. 

Most wonderful of all, I got to meet my patient honoree, Russ Stevens, for the very first time.  He is the son of some dear friends of mine from church, Jan and Doug Stevens.  They lost a seven-year-old son to leukemia many years ago, and a year ago, Russ got it.   My personal theme has been:  They're not going to lose another son to this disease!

The Stevens family came out by the droves to support this fundraiser.  There were four of the five children, with all of the grandchildren, many of their neighbors... there was a whole section of the restaurant filled with those who know and love Russ.  He has surely felt this throughout this last year of illness, but I was thrilled at the message he must be getting from all of this, that soooo many people love him and support him!

Russ, himself, couldn't eat at the buffet.  He just finished his 100 days of special care after a bone marrow transplant.  But he was a great host, sitting and visiting with everyone.  He was very upbeat and positive and I soooo enjoyed hearing his stories.

I wore my Team in Training shirt and was there the whole time, from 5 - 8 p.m., meeting and greeting.  It was personally very touching to me that so many people who didn't know Russ came to support my efforts.  I just went from table to table visiting with people.  Great party, I didn't have to pay for it and didn't have to clean up after it!  Tell you what, if you're new to Team in Training fundraisers, go the restaurant route.  It was so easy!

I just want to thank by name as many people as I can remember who came... in no particular order and send me a note if you were there and I forgot to write it down:

Sheila, Michelle, Trevor, Jeff and his beautiful daughter and her friend, Matt and Cheryl and Kirsten, Vicki and little Samuel, Yvonne and her stunning daughter recently moved here from the DC area, Brother and Sister Carlisle, Joan and Lou from my mentor group (they came all the way from Golden!), Mary Kate my mentor and her husband, Captain Nate and his running friend, April and Sheila and Gary, Cyndee and Patti, Natalya and Alex and Daniel, Rick from my old workplace and his wife (they just saw the flyer that someone posted at the office and came, how cool!), Brother and Sister Stevens, Russ and his wife and two daughters, Shawn and his family, more Stevens kids and friends and family (I can't remember them all :-(

We sat at tables in front of the cash registers so we could say "hi" to Team in Training folks.  These tables are filled with my friends from work and church.

Russ visiting with people at dinner. 

 My co-worker Natalya and her family 
 

My Team in Training mentor, Mary Kate, and her husband, and my teammate Lou.  They were waiting for Lou's wife, Joan, who joined us later.  I was so tickled that they would support me, Lou and Joan had to drive an hour each way!  Is it any wonder that I LOVE this group??!!

Me with friends from church, Brother Carlisle and Cyndee Roberts

Snippets of conversation throughout the evening:

I thought leukemia was a children's disease.  No, it strikes 10 times as many adults as children.  In fact, one type of leukemia,  Chronic Lymphocytic Leukemia (CLL), which my aunt Donna has, generally strikes people over the age of 70.

I just realized I don't want to work 60 hours per week and miss out on my family, and there's no point being all sad, so I'm just grateful for my wife and my daughters and want to enjoy my life with them. -- Russ

Are you are runner, too?  (Brother Carlisle) Yes, I ran the Georgetown to Idaho Springs Half-Marathon that you're going to be running.  Be sure to stop at EVERY rest stop and get plenty of water!

I came because somebody put the flyer out at work and we have someone in our building whose son has leukemia, so I wanted to support whoever was doing this.  (Lovely!)

Russ' brothers all shaved their heads to support him when he was in chemotherapy last year.  Some of them are letting it grow back now that he's getting better, but see these bald-headed guys standing around, most of them are with US!  -- Russ' Dad

Bone marrow transplants are boring.  -- Russ Stevens

Ed. Note: This post is written to wrap my own brain around all that’s been going on in my life the last 15 years. It is not intended to garner sympathy or validation from others (though I’d be lying to say I didn’t appreciate it). It’s really so I can recount my life experiences in order to validate my thoughts and move forward with my own life.

Okay, so let’s recap…

- GnuKid’s marriage loses its heart and soul.

- GnuKid and The Wife hit the counseling circuit, marriage and personal.

- The Wife contracts leukemia.

- GnuKid takes on caretaker role through leukemia treatment.

- The Wife contracts toxoplasmosis.

- GnuKid’s tenure as caretaker is extended.

Yep, that’s the quick summary of the last few posts (and some of you may be wishing I’d left it at that level of detail…tough, this isn’t about you…Nyaah!!).

The addendums: some other personal issues going on through this 15 year time frame which may have had a mild influence on my mental well being (presuming there was any to begin with)---

- GnuKid’s left eye gets a detached retina. They have to pop it out, freeze dry the rips to keep them attached, put a band around the ol’ eyeball, and put it back. My vision is saved, but my prescription goes way up.

- Most likely due to stress, GnuKid develops a bad case of Urticaria (otherwise known as “Hives”). Swelling (and not in the good place), itching, and general misery. This lasted about three months, during which there were quite a few meds.

- GnuKid’s right eye gets a detached retina. First fix attempt is to pump a huge gas bubble into the eye to hold the rips against the eyeball, requiring me to lie face down for 48 hours. When that doesn’t work, they resort to lasers, welding the rips back into my eyeball.

- Mom passed away.

- GnuKid is diagnosed with Dilated Cardiomyopathy, an enlargement of the heart which reduces its effectiveness. (See? I knew I had a big heart.) Luckily, in my case it is mild and its effects are controlled with exercise and diet.

- One of the hives medicines, a steroid, resulted in my developing nasty ass cataracts, first in my left eye, then a few months later in my right. Both cataracts removed surgically… thankfully on separate occasions. (On a good note to this, the doc inserted intraocular lenses which meant no more glasses [other than reading glasses which I would’ve ended up with anyway]! And, it adds a certain twinkle to my eyes as well!).

- And you already know about my sister’s lung cancer (remission) and my brother’s brain cancer (still fighting)…

So… I think I’m quite ready for some health and happiness in my life, thank you very much - - -

Five year-old Molly Anderson has been battling leukemia since May, 2008.  She is a brave young superhero, and thousands of people are cheering her on.  Since Molly has superhero status, we thought it fitting that she have her own fancy superimage.  Check out some ideas for Mighty Molly! 

Vote for your favorite(s).

Molly's own words:

Hi, my name is Molly. I am 5 years old and quite a character. I love super heroes and making people laugh. I am super tough and super strong. I was diagnosed on May 28th with Acute lymphoblastic leukemia Tcell (ALL). My treatment is long but I plan to be a super fighter the whole way.

Thanks for supporting Molly Anderson!

Susan

This October Katie’s running the Nike Women’s marathon in San Francisco. Her personal goal is to raise $4,000 for the Leukemia and Lymphoma Society. A group of about 40 women in the Spokane area, part of Team in Training, train together each Saturday morning and encourage each other during the week.

When she first told me out of the blue one night after work that she was running a half-marathon – 13.1 miles with a friend, I was . . . skeptical. But she only wavered in her goal by upgrading to a full marathon - 26.2 miles.

She attended an introduction session and met other determined runners (and non-runners) and was encouraged by what she heard. She met and heard stories about people with these types of cancer. It was pretty overwhelming, even when she retold the stories to me later.

Katie’s friend lost a family member to cancer years ago and was attracted to the cause because of that. Katie’s Grandpa Jim Caton died from Lymphoma before she was born and we have lost and know of other people that have been inflicted with many other kinds of cancers. It’s amazing how many are out there.

The first few weeks of training were slow and painful. I typically run about three miles, 3-days a week during lunch, so running after work with Katie, pushing the girls in a jogging stroller was pretty easy. As the weeks went on, I had trouble keeping pace and now that she’s built her distance to 5 miles during the week and up to 12 or 13 on the weekends, I’m left in her dust. That makes me proud. Given the fact that she’s had six knee surgeries and plenty of other medical issues, her determination is remarkable.

Raising the $4,000 has been challenging. Right after launching her campaign website an anonymous donor kicked off her drive with a $1,000 gift. We’ve since learned who those people are – and thank them greatly for inspiring others to also contribute. She’s mailed out letters to nearly everyone we know and learned a lot of personal things from people we thought we knew everything about. It turns out our neighbor sells one of the leading drugs to fight these diseases.

[caption id="attachment_19" align="alignleft" width="300" caption="Pinned to Katie's shirt is a note and photo - and the reason she's running"][/caption]

Personal notes have accompanied many returned letters and we’ve shared tears after reading them. Who knew this would touch so many people? A good friend of ours from high-school lost an older brother to cancer many years ago. He was a few years older than us, but I remember him as very involved in school and his family. After sending a letter to our friend’s mom, she sent in a thoughtful donation, a touching note and a picture of her son. She asked if Katie could run in memory of her son. Of course she would. She wrapped the picture and note in a waterproof bag and pinned it to her shirt. It was a turning point that showed just how much bigger this is than a marathon.

She’s held a pizza night fundraiser and we hosted a garage sale last week to raise money. The Spokane Valley Seahawker’s club (of which my mom is president) donated the remaining items of their charity sale. Three awesome co-workers at Avista donated items too. Nearly all of it sold. When shoppers learned that the sale was a benefit for the Leukemia and Lymphoma Society, they shared their stories of family members stricken with cancer and a few paid a bit more for their items than what was called for.

I plan to watch Katie finish the race in October. I have no doubt she will. It will be an emotional event and I’m sure during those last few miles her thoughts will not be on her burning legs and aching feet, but on those who have finished their own marathon with cancer, and after a brave fight, only to lose the battle in the end. Let’s hope someday her steps will lead to a cure.

If you can contribute financially to this cause, please do. Visit Katie’s secure Web site here to check out her updated blog and watch the progress of her campaign.

Thanks in advance and check back in soon for updates on this blog about her training.

I was moved to tears by his mom's prayer request and daily updates on his progress.  He was diagnosed at age three, I think, and they felt they had it in remission, but it's back.  Mason is on about week 25 of a 100-week phase of weekly chemotherapy. 

Apparently, he got really sick and is back in Children's Hospital.  Here is what his mom wrote on Mighty Mason's Weblog:

Mason had to be admitted to the hospital tonight for a fever.  His ANC is 20.  His mouth sores are unbearable.  His little body is just so tired.  He is weak, shaky, and kind of frail.  I feel so badly for him.  We need your prayers for a speedy recovery...

Please pray for him - for his comfort and for his ANC to recover.  If he does not have an ANC of 750 by Monday then he will be delayed in starting steroids and the next round of chemo.  While the break would be nice it only delays us finishing this whole nightmare...

I am emotionally drained.  Mason has not had many coping skills as of late and it is hard to handle sometimes.  Tonight he told me that I never let him cry about this situation of being sick.  He is right - he should be able to cry and be frustrated and mad.  I need to let him have those emotions and be okay with it.  Why do we always have to be strong?  I know I try and be strong but there are times when it is hard. 

If there were one word to describe Mason the past few days it would be tired.  He has slept a lot today and he is trying to sleep again right now.  His ANC is 40 today.  They will take his blood at 5 tomorrow morning and check it again.  He had been fever free until 6 pm when he spiked 102.  That only prolongs our stay - they like him to be fever free for 48 hours and have his ANC on the rise for 2 days straight before we can go home.  I am still holding out hope for a Saturday discharge but we have to keep the fever gone…

He got a blood transfusion today so he is no longer as white as the sheets in his bed.  His lips have color back in them and I hope his energy will get better.  Speaking of blood - if you feel inclined to “do” something to help as many of you have mentioned you could always donate blood.  Kids need blood all the time in oncology.  Parents look forward to a blood transfusion- frightening huh?  It is nice to see color and energy from getting blood.  

So we are just in a holding pattern.  Mason’s mouth sores seem to be controlled with some IV pain meds.  He is asking for a “lunchable” for dinner.  I may have to go get him one.  I pray he can eat it!!!  Thanks for the prayers, notes and thoughts. 

All of you Team In Training people out there run hard. I won’t be at the training on Saturday but I will try and get my 10 miles in one way or another!  GO TEAM~

God bless you, you most certainly will be in my prayers throughout this crisis.

In preparation, I will receive a physical, including a chest x-ray and an EKG and infectious disease screening in order to make sure I am healthy enough to donate and that my anatomical gift is not biologically yucky. She will have high dose chemotherapy and then full body radiation to empty her body of what is presently killing her (which, presently, is just about everything) and she will try her very hardest to not die while my stem cells find their way from Seattle to wherever she is and attempt to graft themselves up in her business.

I got involved with the National Marrow Donor Program the way I imagine many people do: I was killing time in between afternoon appointments. I was walking sloooowly across the Oberlin campus, considering wandering through the mailroom again when I saw a cluster of earnest-looking women standing behind a table covered in brightly-colored schwag, apparently handing out free stuff. I walked over, and behold: I could have a free lollipop if I gave them a cheek swab! Awesome.

I would probably never get a phone call, they told me, but they handed me several packets of information regarding how the whole program works, what would happen if I did get called, and how to update them for the rest of my life with my contact information. I swabbed away, convinced I was swabbing wrong and they would probably just throw my sample out after I left, and thanked them for my nice, new glossy packets (which I read on the way to my next appointment), and that was it.

Fast forward some years. I apparently gave the NMDP my end-of-the-world e-mail address.  It's the one I never, ever use, but incidentally, the only e-mail address I know I will never delete, an AOL account I've had since I was fifteen that I clean out once a month or so. It's the only knickknack I own.  I hold onto it for nostalgia.  This is the e-mail account I created when I wanted to surf the internet without my high school boyfriend being able to talk to me online; it was my secret e-mail, my first weapon of resistance.

When it happened I didn't even get a call when it happened (though I tell people about "the call" when I describe the process so far because it sounds so much more dramatic and exciting than "when I got the e-mail").

I am deleting the same old trash I delete every month from my AOL account: assimilationist crap from the HRC, 10% off of nothing from Babeland, something about my Friendster account (Facebook, you know how this ends), and there on my screen is a terse subject heading: "Bone Marrow Donor Program".

I love opening spam in the hope that it is not actually spam, so I opened it, rather than sending it to recently deleted AOL hell. I thought it was a reminder that I was still in their database, and would I please verify my contact information. I thought it was the donor program finally telling me that I had swabbed incorrectly and they had to junk my specimen.

Wrong. Our records indicate that you may be a potential match for a patient.

Please contact us right away if you are still interested in becoming a donor.

I thought it was a joke. For the uninitiated: there are over seven million people in the NMDP registry, and there are even more folks registered elsewhere. There are barely a few thousand matches made in the US each year. The pacific northwest/seattly area makes around 40. You have a much better chance of getting into Harvard; it is similarly probable to getting Ed McMahon to come to your house during the superbowl with a big check and balloons.

But say you do get an e-mail, like me. This is what it means: someone out there has an HLA type (that's science talk for something geneticky) that matches yours enough based on your preliminary sample that you gave them X years ago as you were dawdling to your meeting with your Women's Studies advisor that they want to test you out further to see exactly how good of a match you are.

If you're still into the idea of giving it up for a stranger, the next thing you will do is answer a lot of questions about your health over the phone. I experienced the joy of the phone screening while shopping for my New Zealand backpack in the REI. While I was being ignored by the entire sales staff, I sat in the corner next to the clearance daypacks and assured the phone screener that I was pretty sure I did not have mad cow disease.

She did not think I was very funny. It probably would not have worked out well between us. You know, sexually.

If there is nothing especially infectious about you (and, you know, you're not, gasp, a gay man or African, because if you are, then you're out, you walking vessel for AIDS, you). you get to go give them more samples. You are in a contest now with some other potential donors to see who is the healthiest and who mostly closely genetically resembles the potential recipient. There might be quite a few people in the running, but there might not be.

I don't like needles. Puncture wounds make me faint, no matter how small. Every time I have had something pierced (what was it about being nineteen that made me think "I should poke lots of holes in my face"?) and every time I have had to give blood, I have passed out. When I had my labret (chin) pierced, I passed out twice. I refused to share this tidbit, though, with the blood technicians who have taken my samples so far; instead I just told them that I really enjoy elevating my feet and drinking apple juice while undergoing medical procedures. They think I am a riot. I don't want anyone there to know how physically challenging this whole business is for me.

Anyway, after they take more blood from you, you wait.  You have somewhere around a 10-15% chance of receiving another phone call from the program. This one is actually a phone call, and it is "the" phone call:

"Guess what? You're the best match for our patient. Would you like to be the donor?"

The woman who called me was elated; clearly the highlight of her day.

I got the call from this happy, happy woman while I was on vacation in Arizona; at that moment I was an hour deep into trying to make our dead campstove come back to life.  I was cursing at a piece of rusty tin in a hostel parking lot when we connected.

"Holy shit", I offered. "Can I call you back, in like, a week?". They were not especially thrilled, but after I promised them that I would call them back when I got home, they acquiesced and I got back to playing cub scout.

So fast forward again three weeks; here I am now, rushing through blood tests and consultations and examinations so I can get this bone marrow stuff out of my body and into hers before her cancer kills her.

Her name isn't Linda (although I guess it could be). They can't tell me her name-- I'm only allowed to know her sex, her age, and her diagnosis. I started calling her Linda, though, because I thought it would be helpful when talking about this whole process to other people to use a name instead of "the recipient" or "the lady I'm donating for".

Or that was my logic. But now I've become attached to Linda, like the way farmers do when they can't help naming their livestock names like Buttercup and Snowflake instead of just tagging them with serial numbers. Not to make slaughtering metaphors while talking about a stranger lady's cancer, but you try slaughtering something named Snowflake.

Okay, not a perfect metaphor. Moving on.

But since they won't give me the idea person to latch on to, I've started creating her for myself. I think about this Linda character a lot. I wonder what she's doing today, how she's feeling, if she's scared. I decided she lives in Detroit, and that she's an old school butch dyke. I think she's a welder. She drinks bud light while she watches the L word on Sunday nights. When she gets done with this cancer thing, she's going on an Olivia cruise like she always meant to. She's a reformed catholic. She wants to be cremated and spread over Lake Michigan because she used to go fishing there with her dad in summertime.

At first it was practical to call her Linda. And then it was cute. And then it was fun, like a game. But now I realize how hard I am trying to turn Linda into 1. the right kind of cancer patient and 2. someone who isn't me. Everyone wants to donate to someone who is taking all of the right steps to get rid of their cancer, who is thinking the right thoughts, who does important good things in life, who is a good person who really, really, really needs this transplant. And everyone wants to donate to someone who bears no resemblance to them, because frankly, it's really easy to drown in thinking that you can just easily wind up on the other end of this confidentiality agreement. She could be my mother or my sister. She could heal and then I could get cancer and die.

In six months we're allowed to make contact (if things went okay and I haven't been hit by a bus yet), no gifts. And if she's lucky and she makes it, and she wants to, we're eventually allowed to meet. I don't feel especially tied to the idea of finding out what happens after my part is all over, and I don't know if I'll ever ask how it went for Linda. She will die without the transplant, but she has about a 40% of surviving the next two or three years with it.

Anyway, Linda, maybe you're out there right now. And maybe your name isn't Linda. Maybe its Shirley Jane. I hope you're doing alright in the last few days before they start bombarding you with chemo. I hope you're enjoying your morning coffee and blogroll. I don't have much to say, except I hope that things go well for you and I so hope that you will wake up in a few weeks when this is all over and you will feel a little more sarcastic and a little more New Yorky and a little more farmy because hopefully my sarcastic, New Yorker, farmy bone marrow will be multiplying like crazy all up in you. I don't pray, but if I did, I would pray for you, but I don't believe in prayer; I believe in blogs and words and being funny when it counts, so trust that if I could be hanging out with you right now, we would probably be laughing up a storm, watching the fifth season of sex and the city or sitting in a public place somewhere making fun of all the ugly people who walk by us with their ugly babies. I would probably spend the afternoon trying to get you drunk and you would practically piss yourself at my antics, you wouldn't even realize that they were antics and that I was trying to make you forget about what is going on for you right now. You would probably just think that you had a terrific, funny friend, and you wouldn't even mind that I was trying to be cheery, because you know that I balance being cheery with knowing damn well what's about to happen to you. But they won't let me do that, and that's probably a good idea, because my friends who know me know that I'm a little crazy in the noodle... so I just wrote this thing for you instead.

CML… Chronic Myelogenous Leukemia.

The wife was diagnosed by chance, having done a routine (and, actually, very overdue) cholesterol blood test. Yeah, she’d been tired a lot lately, but not seemingly more so than any person raising two kids and holding a job. Hell, I was tired, too.

Prognosis for CML was (is?) not that great with just chemo. The best treatment is a bone marrow transplant. And, even with a bone marrow transplant, assuming a donor could be found, survival was not guaranteed.

In my heart, I knew the right thing to do was see her through it, whatever the outcome. Despite my feeling disconnected, I had to help. She was still my wife and, more importantly, the mother of my kids. I set aside my plans to seek a separation and took on the role of caretaker for her.

After months of chemo and negative tests for compatibility from family members’ blood, a bone marrow donor was finally found for her. Amazingly, it was from a non-related donor--rare, to say the least.

Our research showed the best place to have the transplant done was in Seattle, so we traveled out for the procedure. My employer was kind enough to grant me all of my vacation time, plus some extra ‘compassionate vacation’, to be her caretaker through the process. We still had to lean heavily on family to cover the time after I had to return to work, as well as help watch the kids when they weren’t in Seattle.

The procedure was successfully done, if painfully (pretty standard for this). Still, there was a very rocky recovery. Blood counts plummeted and recovered numerous times. It seemed to me it was never the same thing… platelets one time, white blood count the next time, and so on. Because of this, there were also a few unexpected hospitalizations. There were a couple of times I heard doctors cautioning, “Prepare for the worst.” But she finally recovered, stabilized, and looked to be on the road to remission. And, finally, back home for her recovery…

...recovery... not for awhile still (remission takes time), but recovery nonetheless... which means hope that i can get back on track to regaining my own life!

Then came the diagnosis of toxoplasmosis.

Damn. Fucking. Damn. Crap.

Help support Molly Anderson, daughter of our Class of '87 classmates, Kristen (Ritzinger) and Kelly Anderson, in Molly's fight against leukemia.

Join the Fun at Molly's Pool Party!

When: Friday, August 15th, 2008

• Party & festivities from 5:00pm - 10:00pm
• Swim-a-thon from 9:ooam - 11:00am and then again during swim party

Where: Lane Swim Club, which is located ast 2100 Shipley Road, between Foulk and Naaman's Roads, Wilmington, Delaware 19803

What to Bring:

• Cost: $5.00 per person, plus:
• 1 potluck item per family. Families with last names from:
  • A-H: please bring a beverage
  • I-P : please bring a side dish
  • Q-Z :please bring a dessert

Come and enjoy the Silent "Ticket" Auction, 50/50 raffle, Moonbounce, Volleyball, Dunk Tank, Swimming, DJ, and lots more fun!

Hamburgers and hot dogs will be provided.

More about Molly

Thanks everyone!

Susan (Hertzenberg) Hendrich

http://www.llslifemosaic.com/lifemosaic/mosaic.jsp

Family pushes for ethnic bone marrow donors