Trebs

Any idea if we're gonna be able to get back info on the lastest comments on blogs? /ducking But - please? :-)

Ya, like "Babe" way over "Baby" - but tend to use Honey mainly myself. Only problem is Dan trying to figure out if I just was talking to him, or to one of the dogs when I say "Honey"

At least this time, you don't have to date your sister... /ducking /RUNNING

Just a quick note to say everything went well, and the hospital discharged me this morning and I'm back at the apartment Dan and I are using near Stanford. Still have to stay here in the "safe zone" area until around July 16th (give or take a day) and have a follow-up appointment tomorrow at the clinic at 10AM, but just feel great not being actually IN the hospital. I gotta say though - usually I'm totally crawling up the walls toward the end of my stays - this one was very pleasant and relaxed. But still - heh - I'm much happier out.

I should be getting out of the hospital TOMORROW!!! Last night's WBC was 4.6, and they did another one this morning which was 8.8!!! So basically, I'm at the "engraftment" stage, which means that the transplant has settled and started producing white blood cells like they should. I'm VERY happy, as are my doctors. And these aren't just numbers - they also mean that I'm starting to recover an immune system and they are starting to take me off of the various antibiotics and I won't have to be as isolated as they've been keeping me. Through this all, I've also been VERY lucky that I haven't gotten mucositis, which is a very common result of the chemo I had, where it really irritates the lining of my mouth and throat. I've been on a liquid diet of just taking 4 Ensure's a day because right now, any solid food feels like sawdust in my mouth - just no taste and a bad texture. But some patient have to go liquid because they can barely handle swallowing even liquid. Everytime they ask about me taking pills, it's with that in mind - for me, I have no problems but some patients have to start getting almost all of theirs meds via IV since they have a hard time swallowing pills.

More good news - today's (Friday) numbers are in and my WBC rose to 1.5!

Good news (that I don't remember if I mentioned yet) - we already have a Disneyland trip planned for my upcoming birthday in September :-) We're thinking three days this time...

First - thank you to Dan for his updates while I've been .... um.... hehe - more "out" of it. Today has been a very full day. Physically, I'm feeling fantastic. Since I got re-admitted to the hospital last Saturday, I've gone up and down on the fever scale (my first big fever broke Monday morning, and had a 2nd spike yesterday). Today, every one of my temps has been in more of a normal range. Temps in the hospital are taken in Celsius - under 37C is totally normal, 37-38 is a low grade fever that is pretty much nothing, 38.0C+ is considered an actual fever. In Fahrenheit terms, 37.0C = 98.6F and 38.0C is 100.4F. This last temp I had was 37.3, so very happy with that. One reason I'm in here still (and will be for a bit) is since I'm getting the fevers, they want to keep me totally isolated and monitored - which is a good thing. I've been in private rooms this whole time - though I am currently in my third room. I was in a double-room originally with no roommate, but then they needed that room and had a single free so moved me. Then yesterday, since the single was one of their few rooms with a cardiac monitor, they moved me again and now I'm back in a different double room, again with no roommate. VERY roomy - lol. I'm constantly hooked up to IV drips - tons of hydration as well as tons of antibiotic and antiviral drips, and antibiotic pills during the day as well. Doctors come by twice a day, as well as I get my blood tested every night. The high dose chemo I got earlier (the BCNU, VP-16 and Cytoxan) basically did their job in killing all white blood cells in my body. Then I got the transfusion on the 16th, and for the past three days, I've additionally been getting neupogen shots which is a drug which helps the white cells multiply. So far - my white blood count (WBC) has been fixed at 0.3. To give perspective - normal WBC counts are 4.5 - 10.0 typically. When I got ready for the collection, I had to have at least a 3.0 to start collection. ***MAJOR news - my nurse JUST came in as I'm typing this - my WBC for tonight is 0.8!!! During collection, again, my WBC was just constant at a low number but once it started rising, it only took about 2 more days to get into the normal territory. Now, I'm only taking half as much neupogen a day as I got then, but still VERY encouraged by the numbers finally starting to rise. In other news - I gotta say today's news both saddened and stunned me. First Farrah's passing - esp after her very courageous battle against her cancer.... hits very close to home. I mean - I am VERY thankful that I've actually been able to be able to get to complete remission, so not even close to being in the same boat as her, but still - I can understand some of what she's gone through and had to face. Then the out-of-the blue news about Michael Jackson. I'm old enough that I REMEMBER the Jackson 5 - anyone else remember their cartoon? The song "One bad apple"? Then growing up and having his other major hits coming out during high school and college... I saw one interview with "people on the street" and some guy said that Michael Jackson's work was the soundtrack to this guy's life. Anyways - just wanted to give an update to everyone as well as express my sense of loss of these two people today. Now that I'm feeling a lot stronger, hopefully it won't be as long until the next update.

First Farrah and now this. Considering where I am - Farrah's struggle and loss to cancer is hitting a little close to home. And for those who believe in the three-at-a-time, I've seen tons of posts about Ed McMahon, Farrah, Michael already...

Not to mention smoking hot.

Or both :-) Thanks again to everyone for your thoughts and pulls (thx Mark) 2nd set of chemo was today and was NOT bad. Now I get another rest day tomorrow and Sunday is Cytoxan, which I've had a ton of. No reactions usually with Cytoxan on the day of (though I feel it about 5 days after - and keep feeling it up to 24 days after, day 20 is the hair loss day typically). BUT I know what to expect - whereas these previous two drugs I didn't. And THEY ARE OVER!

LOOKS great - now, this version, Arthur and Merlin hook up, right? That solves the problems of Gwen, Lancelot, and Morgana...

Thank you all... quick update - first chemo (BCNU) is over. NOT a fun drug, was feeling very anxious and one of the worst nausea's I've had in chemo yet (but still didn't vomit so that's good). Left me with a headache - but the nurses were great and constantly helping me, giving me any anxiety drugs, tylenol, etc. Today is a rest day - then chemo again tomorrow. It's good that I have full wireless internet access here but not sure how much I'll be on. This morning I work up feeling great so pulled out the laptop after breakfast, changed around my iPod play lists and now gonna lay back, read and listen to music... More updates to come :-)

I've been a little quiet recently, basically just recovering for the collection process which took longer than originally expected by almost a week. So, to make sure I had an adequate recovery time, the rest of my schedule got bumped so instead of having gone in June 3, I am now going in tomorrow, June 10 to start the week of heavy chemo and then a week from today, I'll get the transplant (ie, the cells that were collected from me will be reintroduced). It will take a while for them to settle back into my bones and start producing white cells in the proper mixture. The 28 days after the transplant, I'm basically stuck here as outpatient near Stanford, but having to go into the clinic daily for between 3 and 6 hours a day - for labs, trainings, learning recovery techniques, etc... But the key point is right here, right now - psyching myself up to check into that hospital tomorrow morning, knowing all the side effects and complications of the three different heavy chemo drugs they'll give me. First BCNU tomorrow, then a day off (how nice), the VP-16 and again, another nice rest day. The finally cytoxan - what kind of f**ked up world is it that I am looking FORWARD to high dose cytoxan. I mean in part - its a known quantity. I've been through it before. I know how I'll feel shitty five days after I get the drug. I know I'll lose what little hair I've regrown about 20 days after the drug. I know how it will make me tired and like all of the others, want to just control my life. But at least cytoxan - I know... These two other ones that I'm getting first - I've been warned of things to be careful of - but until you actually go through the drug, you never know what will or won't happen. Or when for that matter (since many effects are quite delayed). But together, they'll do their job to basically clear out my bone marrow and blood of any exisitng white cells... So the transplanted cells that were collected get to go into a tabula rasa and create without preconditions to get me a circulatory system that actually WORKS! WOOT! So - I'll be in the hospital for 8 days, and may have bursts of energy where I can expand on these blog entries... or just ignore it all and play mindless computer games... we'll see :-) AND once again - to EVERYONE who has expressed their thoughts, prayers, energies, comforts - Dan and I truly appreciate the friends we have and the support we've received. Thank you again Robert

Both Dan and I play it on Vista with no problems...

Have a FANTASTIC Birthday Eric - and remember how to count. 2 Admins and 1 Mod DEFINATELY outweigh 1 Mod ;-) Just sayin, buddy...

If anyone wants to react to the decision which will be released in a little over an hour, I've created a thread in the Soapbox to do so.

Try the first book of Christopher Lydon's William Carter series, "Carter's Army" - I think it will fit the bill for what you're looking for.

Have a FANTASTIC birthday Myr - you deserve it and so much more <HUG>

Two options: 1) Tell him that you have a blog and let him know the url or 2) Just summarize the blog to him "Dude - I'm now a vegetarian for the summer - so I can't eat your meat anymore"...

Not only hotness - but the caption fits as when I think of Steve, I think "HUGE" :-)

I just wanted to give everyone a bit of an update about what's going on with me. I told some people the details, but figure this would be easier and more comprehensive. Back in late February, I finished the main chemo treatment for the Mantle Cell Lymphoma (MCL) that I have. After that, did a full round of testing and it showed that I was in complete remission (CR) - WOOT! What the MCL did to me, was basically cause my bone marrow to produce blood cells in the wrong mixture - way too many immature white cells and that left very little room in my blood for red cells (which explains why my face was grey when I was in Denver last year). So the chemo basically zapped my marrow to try to get it back on track. A lot of the studies they have for this are new - but one encouraging bit of information they've studied is for patients my age who go through and beat MCL, then do a bone marrow transplant - after 10 years, 95% of those patients are still in complete remission, where as patients who don't do the bone marrow transplant, only half are still in complete remission. So from the start with my treatment, my doctor has been planning on me doing a transplant as the finale to my treatment. I started with the prep work for that in the past couple of weeks - pre-testing, insurance authorization and a ton of teaching about what will happen and how I need to take care of myself. There are two different routes to go for the transplant - autologous which means using my own bone marrow or allogeneic which is a transplant from someone else. My sister was tested and is a perfect match - but due to a lot of other reasons (mainly recovery time and risk factors), we're going to go the autologous route (which since it's my own cells, also means no risk of host/graft rejection issues). The thumbnail of the process is that I'll get a drug that causes my bone marrow to overproduce the right type of basic immature hematopietic blood cells (a type of stem cells) that will then be harvested from my blood. After a break, they'll give me heavy chemo for a week to kill off all my existing bone marrow and then put those harvested cells back into my blood (the actual "transplant" day). They'll naturally then move into the void of my bone marrow and start producing blood cells in the right way. The majority of this work will be at the Stanford Cancer Center. The actual day of transplant is scheduled for June 9. This week, I'm down here at Stanford, through Saturday morning to get a blood catheter put into my chest (to make it easier to harvest my cells, as well as give me any IV's or transfusions during the process) as well as a preliminary chemo treatment. Then starting Saturday, for about two weeks, I'll start giving myself injections of the drug to help the overproduction of the stem cells into my blood - but at least I'll be able to do this step here in Sacramento. Probably around May 12th or so, I'll head back to Stanford for the actual collection process which will take four hours a day and can take between one and five days (depends on how many cells they are able to collect each day). These cells will be frozen and I'll have a break until June 3 when I head back to Stanford for an intensive round of chemo over a week time - and then the day after will be the transplant - which is supposed to only take about half an hour. I'll be discharged but need to remain in the Stanford area for at least thirty days - and follow a very rigorous regime of taking care of myself - things like not drinking any water unless it's been boiled first. I can't touch raw foods - Dan will have to do all of the cooking and cook things well. After one month - hopefully my immune system will have recovered enough that we'll be able to come home to Sacramento - but still heading back to Stanford often for tests and meetings. Recovery is estimated to take about five months total after transplant (so - mid-November?). I have had very good recovery up to now with my regular chemo, so its very possible I'll be able to recover faster - but unfortunately, Dan and I are also trying to prepare for a worst-case scenario. Its still a long process ahead - but at least having a schedule and idea of the procedures makes it easier to deal with. As things happen, I'll try to keep everyone updated with how I'm doing. Robert

<HUG> It's just great to hear from you - sorry about the slow writing. Dan's been going through a little of the same - he had a small burst of production on one story about 2 days ago - but it's been trickling out. Hopefully Thursday gets you back in the swing of things - but if not, we totally understand. I hate to gush - but considering the quality of your work, it's more than understandable that it goes very slow at times. And we have recourse - heh, myself - I just finished re-reading most of your old work. It was great - especially when I came across details I had forgotten. You REALLY are a fantastic writer.

CONGRATULATIONS - how close to DC is it? What are the guest rooms like? How are you decorating Dan and my room?

Visiting Alcatraz made you feel more comfortable dating in the Big House?!? /ducking