Shutting Down...For Now

This site is about to be shut down.  There will be no more new blogs.  My life may be headed back in the right direction.  Yesterday I received the results from my biopsy and it seems I am AML (leukemia) free.  The one caveat is that the doctor did not pull out as much marrow as was necessary (my body seems to be very stingy with the marrow -- it has happened almost every time I've had a biopsy. My Kaiser doctor has had to needle me three different times at one sitting!) so in three months they will retest. Basically I'll have a biopsy done with a bigger needle. Ouch!

The good and the bad: I do not need to wear a mask (except at the hospital), can drive with the window down, drink water from a faucet (and bottled water), eat raw fruits and veggies (except at restaurants), and take a bike ride! I still have to take massive meds, must not work/play in dirt/grass (can golf but must be very careful), need to watch myself around children (easiest way to catch something) and will be very fatigued for a while.

Well, I'm seven days away from a 100 days -- really, my new immune system is still in its infantile stage.  All is well. I'll shut this down and bring it back only if I have to reenter the hospital.  Thanks for all -- the feedback has been great. In the worst of days when I was in Stanford Hospital the cards/replies meant a lot -- you really don't realize how important people and words are to your well being!  Ok, this ship is about to set sail again -- hopefully we see you all soon!

ps -- no pictures again! The computer or the site will not allow me to upload....I had some good ones too.

Cleaning Up!

I'm finally leaving Palo Alto! Per my agreement with my doctors, I am free to commute from Galt starting next week!   Tomorrow is day 80 post transplant. Possibly the hardest 80 days of my life (the first 80 days in Peace Corps is a very close second)! It may be my last day at the transfusion center - On Tuesday I'm scheduled for a biopsy and then on Friday I have my port taken out (the port is a plastic tube that runs from the right side of my chest all the way to the heart -- when I needed blood, platelets, meds, etc. they would give them to me via the port rather than through an IV in the arm - The best thing about this is no more taping and covering up before a shower -- its all natural for now on!). Starting the week after this I will be seen by my regular doctor (Dr. Arai) at the clinic. It will probably mean a 1 hour appointment rather than the 3 hours I've been averaging at the ITA (transfusion center).

Ok, got to go -- need to clean up this apartment. For the last month or so I have been living alone and really neglected the cleaning -- time to pay the piper...ok - take care and we'll see you soon!

Just FYI Stuff.....

There was a great article in the Sacramento Bee this weekend of a young girl with Acute Myeloid Leukemia (AML).  She has a rather dramatic story but really when you're that young and have to go through this its pretty dramatic (for them and their families). Where/when you can please give blood, register in the bone marrow registry (my brother was a match for me but not everyone is so lucky and the procedure is usually done by taking your blood nowadays), give money to cancer research, or just be aware of your own health and those you love.  Click here to see the story -- it's a good read.

For more information on donating, click here.

Alright, folks -- thanks for everything -- you are all very supportive and appreciated.

A Better Week

Whew! Just got back from a nice walk. Usually I go around 6 in the morning but today slept in and didn't leave till about 10.  Walked 45 minutes through winding, shade covered streets - very pleasant. The one good thing about being stuck out here is the weather is so nice!  I think the high today is supposed to be in the mid 70s.

Well, this is a far cry from last week. Had a very difficult week. Was tired, weak, tremors in the hand, a semi headache....I was starting to think the leukemia was coming back. On Friday the nurses checked my blood and it was discovered that my Prograf level was almost twice what they want it to be. Apparently my body reacts very efficiently to this drug.  They lowered the dose for the 3rd time so hopefully things are more steady from here on out.  All else seems to be going well. I am pushing the doctors to release me early. I wanted to commute at 70 days but we compromised and if all goes well I can begin to commute at 80 days. This is a lot better than 90-100 days.  My next target is getting the mask off. I think I should be able to do it already (except in hospitals/near children) but won't chance it without the doctor's approval. Today is 65 days post transplant so next week I'll start seeing what the doc thinks. I really have been lucky through all this!  Oh, and my eyelashes and eyebrows are growing back!

ps - no pictures today - the computer/server seems to be acting up.

Progress! Home for a Weekend!

Finally some movement! Had a great visit today at Stanford. My numbers were good and my body is slowly feeling stronger. No rashes, nausea, diarrhea, etc...anyway, the good doctor finally gave me approval to go home on the weekends! My life was sort of hitting the doldrums...it was Bill Murray and 'Groundhog Day' all over again.  On Day +60 (60 days since transplant) I'm going to start pestering them to allow me to commute from Sacramento.  As it is now I walk to the clinic on my own, drive everywhere independently, cook, clean, manage meds, and even flush my port.  I am a damn Rock!....sort of. The one thing I fear, even more than the chemo/radiation/transplant, is this graft versus host disease (GVHD).  Any type of infection (internal/external causes) can lead to the GVHD.  If I get that then I'm in trouble...and supposedly this will be a danger for at least the next five years.  Anyway, this is supposed to be a celebration! Everything is still positive. My numbers are good, I'm eating well, and my body is holding up. Sometime next week I'll see if commuting is a possibility -  that would be a nice two month gift.

Relaxing at the clinic. I get my blood drawn and then have to wait an hour for the results to come in. Today I needed magnesium which takes about an hour to drip. In the meantime I catch a little espn and listen in on peoples conversations.

I'm home! Still having to wear the mask but free to be away from Stanford.  My prediction: By next week (or by August) I will be a commuter to Palo Alto.

Just Checking In....

Hello All! Its been a while since I last wrote....just have not had much to talk about.  My whole life now is meds.  They tweak this way and that way...Add something here, takeaway there....today I was in the unit for four hours!  Anyway, 3 times a week I have my blood drawn and then, depending on the results, they give me some type of iv. Today it was magnesium.  What happens is that there is constant reactions by my body to the different meds I take....too much of this one and something else goes out of wack.   Well, to make matters worse I still get fatigued easily, have low concentration (hard to read...and no cable/direct in the apt.), have to be very careful with the sun (sunburn could be fatal - instigate graft v. host), and have to wear my gas mask everywhere I go (except in the car and in my apartment). I'm pretty much on survival mode - I do just enough to keep the days rolling and my numbers climbing.  I should be grateful because all indications are that I am progressing well....just have to fix it in my mind that this is an ongoing battle (say, more like Iraq than Grenada)

Me and my friends: meds and the mask.....My noggin seems to have grown - impervious to age, weight loss, chemo and radiation!

Progressing....Day by Day

Yesterday I delivered a thank you card to the BMT unit.  My time there was brutal but without the tremendous treatment I received from the wonderful doctors, nurses, aides, etc. in the the unit, it would have been disastrous.  There is still a chance I may have to spend some time back in the unit but I'm progressing as if the next time I see anyone from there is at the annual reunion party they have for transplant patients at Stanford.

I am doing well. My numbers continue to soar! My last reading showed my white blood cells and platelets approaching normal levels. I am no longer hooked up to any type of iv. I started to do light exercises today and can walk longer distances now.  However, I am still taking a bunch of medications.  Most of these meds are taken to help me fight infections.  I am very susceptible to host versus graft (my body fights the transplant/brother's cells) disease at this stage thus every Monday, Wednesday, Friday I am at the outpatient unit having my blood checked and getting tinkered with.  Its a very basic life right now but if I work hard and do what the doctors ask I get my whole life to live. Thats exciting.  Hopefully, in a few weeks I'm back home.

Success!

Just returned from my afternoon session at Stanford. It is now official -- I am getting better and will be able to cut down on my visits to the outpatient clinic to three times a week!  I'll have to exercise more (walking), do breathing exercises to keep the lungs clear, eat, and drink about 60 ounces of fluid a day (can be water, Gatorade, soy milk, juices, etc.) in order to maintain this status but I'm up for the challenge. My numbers are holding steady and my body/mouth is slowly healing.

One back note - probably should have had this on one of the early entries.  I named the blog "Like a Rock" because when I was first treated at Kaiser on Morse people would ask how I feel and I'd say like a rock!  Then it became "I am a rock"...and then "I'm a rock - this thing can't beat me"....anyway, some people thought that was a little too premature and even a little too optimistic but I believed in it and it was fun.  So, sometime during this time I received a card from the sweetest of all people, Joannie, and lo and behold it was about the rock!  Joannie, still have the card and I still think I'm a Rock!

I'm Free!

On Monday I was released from the Stanford BMT Unit and allowed to go to my apartment just minutes from the Stanford BMT Outpatient Clinic.  It was hairy for a week or two. Literally had a mouth full of sores, blood and saliva....man, I was hating! Then it slowly started to get better. My last days as an inpatient I ate and drank just enough for them to let me leave.  So far I have been very lucky going through this process....oh, believe me, I have felt misery but always a misery I thought was going to leave me sometime soon. As of today I am eating and drinking almost at will and able to do solid walks. Sleeping in your "own" bed and eating "home" cooked meals does wonders for the body and spirit.  My brother, Henry (the donor) and my girlfriend, Andrea have been excellent support. Just tear up thinking of all their sacrifices. My other brother leaves his wife and kids for a week to help out here starting in late May.  Friends have meant a lot.  Hearing certain voices just infuses me with strength. 
Those two beautiful lawyers that strolled through here the other day did wonders for the soul...cards, text messages, emails keep me afloat...Seongsook's cards and all the well wishing from the incredible people at DMH have been so fun and exciting!  Well, I'm gonna stop right now before I start bawling....highly sensitive these days....Anyway, I am good and getting better.  

The bedroom! We actually attached the beds...although when the bro stays they may go back to doubles.

Here's the main room.  No cable and slow internet...however Kaiser reimburses the total cost so overall the place aint bad.

Why, Why, Why, Why!

A little concoction they put together every morning just for me....Nasty stuff!

I'm King of the.....Flower Garden!

I'm just about back! My numbers are climbing steadily and my mucositis is slowly ebbing....This thing could always change tomorrow but for today I'm taking my hacks! I'm like Ali! I can't be stopped! I feel good. The numbers indicate that my brother's bone marrow has taken hold. I have good wbc counts, my reds have moved up, my liver function is good, and no skin irritations or rashes. There are a few other indicators and they are all favorable to me. What does it mean? I may get out of Stanford Hospital faster than expected but then transition to an outpatient status. I would live in this area (probably in some apartments - they have a social worker on-site to help us with this) for up to 60 days as an outpatient to the BMT clinic! Its far from the 5 years that you want and need to say that this was a successful operation but it is a necessary first step! Viva la Che! Viva la...ooh, wait that was the last entry....How about this:

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

There is some love that will not
go away

You're here, there's nothing I fear,
And I know that my heart will go on
We'll stay forever this way
You are safe in my heart
And my heart will go on and on.....

That's supposed to be me at the front of the bridge (Flower Garden) screaming out "I'm King of the world" to nobody in particular....a little old lady was nice enough to help but very difficult to direct.....

Weekend in Hell-ville

This weekend has proven to be pretty awful.  My mouth and throat have continued to deteriorate and started bleeding today.  I also have recurrent nose bleeds.  I've been given platelet transfusions to control it.  My symptoms remain as before.   I still feel terrible and have about another two days to go before my blood counts start going up and the mucositis ebbs.

Thankfully my pain is, for the most part, controlled by fentanyl, which is now on a continuous drip in addition to my push button when I need a little extra relief.  I'm miserable, but this is a "normal" part of the bone marrow transplantation process.

I was so happy to get a delivery of a bunch of beautiful get-well cards from my friends and colleagues today.   Such kind words of support brought a smile to my face.  It was such a nice way to end my weekend and very much appreciated.

A nod to Linda for the Che pin from Cuba.  I'll keep on this battle as old Che did, but with better results!

Hasta la victoria, Siempre!!  Until victory, Always!!

Tick-tock ...

Time seems to be dragging by too slowly.   I spend my hours and minutes trying to rest but having to get up to pee every hour or so -- the IV saline keeps my body hydrated, but the downfall is that I have to get up frequently to void.  My throat has become more painful and sores are developing in my mouth.  This was an expected side effect of the chemo, radiation, and immune-suppressing drugs I'm taking.  It's called mucositis and it is no walk in the park.

I also stopped eating a couple of days ago -- no appetite and the mucositis makes chewing and swallowing impossible.  Thus, I'm on IV nutrition as well.   The yellow liquid is the actual "food", and the white milky liquid is fat -- it's a 80/20 ratio.

I continue to be very weak and fatigued and concentrating/focusing is difficult -- I'm getting help to compose this blog entry.  I was started a pain alleviator, Fentanyl, a few days ago.   They have it set up where I push a button to get a "hit" when I need it.   It lasts me a good hour and takes the edge off and helps me rest comfortably.  Fentanyl is a narcotic and is 80 times stronger than morphine.  It is so powerful (and potentially deadly) that it is actually LOCKED, and only the nurses can access it with a key -- you can see the lock below and the syringe within contains the good stuff.   I guess they don't want me going berserk and overdosing.

Despite this difficult time,   I know I will be recovering eventually and I remain optimistic.  I thank you all for your support and the kind comments you have left me.

I will leave you with some lovely Spring pictures of the Stanford Hospital grounds/gardens my girlfriend took.  Till next time.

Dog Daze

I'm 4 days old.  Four days since my bone marrow transplant (BMT), that is.  I'm connected to a small army of chemicals, dripping into my body non-stop.

I'm feeling extremely fatigued, hazy, and my throat is hurting.   Definitely not an easy time, but it's about what I've expected so far ... but we have not reached the hump yet.  I've been moved into an isolation room because my blood counts are dangerously low.   The doctors and nurses keep a calendar for me which tracks my blood counts every day, my BMT birthday, and some of the nasty medications I have to take.

 I should reach rock-bottom in the next three to four days; if all goes well, my counts will start increasing after that.   It's been hard to focus and writing this blog entry has been a challenge.  So, with that said, I'm due for a rest and nap ...

A New Day

The transplant was over in about 45 minutes. Now we wait. It will take some time for my brother's cells to infuse into my marrow.  I'm tired today so will say more later.

April 27 will be considered my second birthday for now on.

My Bone Marrow Donor!

All I want to say is:


Did I ever tell you you're my hero?
You're everything, everything I wish I could be.
Oh, and I, I could fly higher than an eagle,
for you are the wind beneath my wings,
'cause you are the wind beneath my wings.

Oh, the wind beneath my wings.
You, you, you, you are the wind beneath my wings.
Fly, fly, fly away. You let me fly so high.
Oh, you, you, you, the wind beneath my wings.
Oh, you, you, you, the wind beneath my wings.

Fly, fly, fly high against the sky,
so high I almost touch the sky.
Thank you, thank you,
thank God for you, the wind beneath my wings.

They take his blood - spit it through a machine - take out what I need - and then his blood back to him.

Thats the gadget!

Ladies and Gents, The Pain Begins

Just finished my dose of chemotherapy! My blood pressure dropped slightly but nothing to worry about. I'm a made man...They gave me VP-16...VP-16? that just sounds like its dangerous. Anyway, tomorrow could be another story.

Bad chemo in...bad chemo done...in next 7-21 days my body suffers for this....

The Big House

I've finally made it! Am now officially an inpatient at Stanford Hospital.  All is still going well...still the dire warnings but there is enough attention to detail here that I feel I'm in good hands. At about 2 - 4 I will receive my chemo - they say this one is no joke and is 5 times more potent than anything I've had before...ugh.  If I'm lucky, today and tomorrow will go well and I head into the transplant on tuesday with a little bit of wherewithal.

Yesterday I finally had my nauseous moment. Right after my last session of radiation I got back to my room and started scarfing my lunch - within minutes of finishing it I felt this overwhelming need to get it out of me! Just huge roars! Again and again...and then it was all over.  All is well now. I can expect a little more of the same soon because they say it takes a while before all this poison gets out of your system. My mouth is supposed to become infected too. Anyway, my bro has been big again -- he is all set for the transfusion. There is almost no doubt that we will be up and about sooner than later.

I did it! A graduate of Stanford!...or just a certificate saying I was able to finish my radiation treatment.

Radiation Days

Well, I just completed day 2 of my radiation treatment.  I have two days to go but only 5 more sessions. So far, knock on wood, I am taking radiation well. Some fatigue but no nausea, burning, rashes, diarrhea. Each session I get the juice for nearly 8 minutes and I still walk out of there like a champion! On Saturday, after the 4 days of radiation, I am admitted to the hospital and given a very high dose of chemo.  We have been warned that the next 10-21 days after chemo will be the most miserable of my life...I'm good at miserable so we'll see how bad it really is. The good doctors of Stanford are set on destroying me and then, using my brother's bone marrow, building me back up.

By the way, my brother has been a real champ! Helping with appointments, meds, driving, friendship, etc...really having a good time when you consider the circumstances.  Ok, tomorrow I write longer and provide an introduction. Adios friends!  Peace to all - Hopefully I'm here everyday for the next three months so check in when you can! Jess

I have to wear a mask when walking around the clinic or outside.  My trusty bag is at my side.

Here I am receiving radiation. The set up is rather crude - almost looks like a torture chamber or hangman's box. There are two metal plates that protect my lungs. I also rotate sides - once in front, next the back, etc.

Stanford May Not Be All That.....

Very rough first day...Left Galt at 4:30am with my brother for a 7am appointment.  Had a catheter placed in my chest,  radiation marks/ measurements made on my body and then, at about 3, had a continuous IV drip started. Well, sometime around 4 the nurse noticed a hole in my catheter tube and I had to go back to the surgery room to have it repaired - whose fault was this? who knows, but it cost me some blood, time, and a little bit of pain....and then getting my clothes after the operation was an even bigger fiasco! Too tired now -- Probably wasn't as bad as I thought. Anyway, at the end of the day, I got a bag full of fluids to follow me throughout the week. Tomorrow we start radiation!