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My Anaplastic Large-Cell Lymphoma Story
Or, This Is How I'm Going To Beat Cancer
Recent Entries 
24th-Mar-2009 09:17 pm - Day +6
Home Sweet Home!!!!

Dr. Agura persuaded me that I didn't really need to be in the hospital any more (like that took much!), and sent me home.  I neglected to tell Ashli, of course, so the look on her face when Mom and I walked in yesterday was priceless...

Had to go down for a checkup today - took over four hours to get my labs drawn, have a 500mL saline infusion, and see the doc.  Finally, Dr. Fay found us, and had some choice words for the rest of the staff, but it was really the fault of my nurse yesterday, who set me up with the wrong doc.  On the plus side, everything came back good, and I don't have to go back down until Thursday.

Cathy, Jason, and James came down on Saturday, and are going back to Lincoln on Thursday.  It's been good to see them, and even better to see them out of the hospital!
19th-Mar-2009 12:05 pm - Day +1

Well, transplant day was yesterday, and I slept through most of it. ;)  Intravenous Benadryl will do that to a person....

So far, no reactions or anything, yet.  We really have no clue as to when I'll be out of here - could be this weekend, could be a couple of weeks.  It depends on how my counts do (they started dropping due to the pre-treatment chemo and radiation), whether or not I end up with a C. Diff infection again (please, Lord, not again!), and what kind of graft-versus-host reaction I have (if any).

In other words, things are looking good, but we really have no idea what to expect going forward.  We're just hoping and praying for the best, and preparing for the worst.

In other news, I got a new toy setup for my birthday - a 2001 PRS Santana SE (with a set of Seymour Duncan '59s), and a Vox AD30VT.  Yay, I'm electric again! ;)
14th-Mar-2009 01:36 pm - The Final Destination
Sorry for the delay - it's been a long month.

Was back in the hospital the week after my last chemo with a C. diff infection.  Went back to work for two weeks, and came back into Baylor for the pre-transplant regimen yesterday.

Chemo today, tomorrow, and Monday.  Mom came down 3/4, and is here in the hospital with me right now.  Ashli will bring the kids up on Tuesday (my off day - no treatment scheduled), and then she'll stay with me and Mom will take the munchkins home.  They'll switch again after 3-4 days, and keep up that pattern for the rest of my stay.

Speaking of my stay, the last day of treatment is Wednesday - total body radiation at 0700, and the transplant that afternoon (assuming the flight with my donor cells isn't delayed for some reason).  Dr. Agura (one of Fay's compatriots) is the on-call doc for the transplant ward this month, and he said that I could be out of here within 4-5 days after the transplant, if everything goes well.   I could also be in here for three weeks.  I could also just pass on.  We really don't know. ;)

Thanks, everyone, for all of your support and prayers.  This is the end, one way or another - if this doesn't work, it's on to low-grade chemo to keep the cancer at bay, rather than going for the cure.

Bad news is I have to have my ports in for a minimum of six months after the transplant, so I'm not going to be getting on the ice again for awhile.
17th-Feb-2009 08:10 am - More Chemo
Back in Baylor, doing the chemo thing again....  Should be out on Friday.  We're looking at this chemo as not a "treatment," per se, but as more of a bandage to manage the disease until we can get the transplant done.  I'm hoping to have a more concrete date for the transplant today.

Other than that, not much new here.  Still kinda freaking over the whole idea that my chances are completely random, and that we're at my last chance for a cure.  On the other hand, I have to believe that God has a reason for whatever way this goes, and that he's not going to take me from my wife and children without a damn good reason!

Gotta talk to Dr. Cooper about when my implants can come out - with either possible outcome, I'm hoping to be back on the ice for the fall season!

Edit:  Found out from Priscilla today that the donor we have (the domestic one) was going to be unable to make it to a scheduled physical for the NMDP.  At this point, the NMDP is recommending that we pursue otherr donors, as they have seen that this kind of behavior can lead to a lack of donation.  Luckily, we have an international (European) donor that is the same 5-of-6 match on the primary HLA typing (HLA-A mismatch), with a DRB4 mismatch in the "minor" typing.  Priscilla says that Dr. Fay is OK with this, and we should be on schedule with the early March timeframe for the transplant. 
15th-Feb-2009 04:50 pm(no subject)

Well, the donor is onboard!!!!!

We had a bit of a scare last week, when the local office of the NMDP called Dr. Fay's office, and told them that the donor hadn't committed to doing the donation yet.  Turns out, the donor has already done a full bone-marrow transplant, so a PBSC transplant should be a piece of cake, and they were just trying to get all of the familial scheduling worked out.  Right now, I'm tentatively scheduled to have the transplant on March 10, and we hope to get that finalized in the next day or two.

I go in tomorrow for another round of preventative chemo, and should get out on Friday morning.  This will be the same as the last round (VP16, mesna, Cytoxan, etc), which is making my hair fall out again.  Yay.

Had an interesting conversation with Dr. Levy (Dr. Cooper's new partner).   Basically, if this fails, we go into a "quality of life" kind of treatment, rather than going for a cure.  That would mean lower-dose oral chemo that would be able to be done outpatient, and shouldn't have anywhere near the nasty side-effects of what I'm on now.  I'm hoping, one way or the other, to have my implants taken out in the next few months, so that maybe I can actually get on the ice again!

Ashli and I went to DelFrisco's for Valentine's on Friday - I decided it was a good year to splurge, since there's a definite possibility it might be the last one.  I hope not, but I'd rather not have any regrets. ;)  This might get expensive, though....  Time to win the lottery!

I'd better get back to work on this Jewelry analysis I'm doing for work...  I need to get it done before I'm without a VPN connection for a week.

2nd-Feb-2009 08:09 pm - Blah blah, blah blah...
Sometimes, no news is good news.  Or something.

Got home from the hospital on Saturday.  Watched the football game on Sunday (I'm not in the camp that's going to call it the "greatest Super Bowl of all-time", but it was a darned good game!).  Went to work today.  Got radiation.  Yay.

Right now, we're just waiting for the info on the allogeneic transplant.  No more chemo planned at this point, and only two more days of radiation.  It's good to be back to what passes for normalcy anymore - work, kids, home, and hospital. 

Don't bother going to Circuit City for any good deals at this point.  I'm having to replace the hard drive in Ashli's laptop, and so I thought I might find somehting good there.  A Kodak printer that runs for $149 nornally, was "everyday low price" at $149, was priced at $179 ($200-10% discount).  I'd wait until March (or until you know your local store is closing) to go look for any decent deals.

That's all from this la-la-land!
27th-Jan-2009 05:40 pm - And, here we go again

First, the good news:

My CNS fluid came back clear, my head MRI came back clear, and my bone marrow came back clear.  All of the lesions/tumors that I now have are in the skin and/or bone, but without the systemic involvement that I had prior to starting this process back in July.  What this means is that, if we can keep everything clean, I'll be good-to-go for the mini transplant.  Right now, the timeline for that is in another month or so.

Now, the not-so-good-news:

I'm back in Baylor (again) for another four to five days of chemo.  I've got a tumor putting pressure on cranial nerve #7, which has to do with facial expression and motor control on the left side of my face.  I look like I've had a stroke - the left side of my mouth doesn't move, and I can't fully close my left eye.  In addition, I've had some tumors pop up elsewhere on my head, and a new one on my right ankle (where all of this started 15 months ago).

I'll be getting some of my old friends, and a couple of new ones, as well as an increased dose of steroids.  Dr. Cooper (and his new compatriot from Johns Hopkins, Dr. Levy), are actually somewhat glad that the transplant is so far out, as that allows them to give a full course of chemo, and have my counts recede and rebound, before going into the transplant.  As Dr. Levy said, the cleaner I am before we go in, the better my odds are on coming out.

Don't get me wrong - I'm scared shitless.  If this transplant doesn't work, there is no other plan.  Theoretically, I could end up on indefinite chemo to try to keep everything in remission, or I could go on a clinical trial, but the yellow brick road ends here.  We're at the gates of the Emerald City, and only God knows if He'll let me keep going on this journey.  Or not.  All I can do is have faith and hope, and pray.

And, on that note, thanks for all of your prayers and support.  I couldn't have made it as far as I have without the friends and family that I have been blessed with.
20th-Jan-2009 07:22 pm(no subject)

It's hard to come up with a subject when the news is the confirmation of the other news.

I had a breathing test today, and then Dr. Cooper did another bone marrow aspiration.  On the plus side, it's the first time I've had one of those where the Lidocaine was enough anesthetic!

I'm on a lower-grade chemo called pentostatin, one two-hour infusion every two weeks, until either I have the transplant or Dr. Cooper turns it off.  I'm going to get a MUGA exam, and a CT, tomorrow - that's the last of the testing that the insurance is requiring before they approve the transplant.

There's a 30-40% chance, according to Cooper, that the chemo could send me into remission.  More likely, though, is that it will just stop the growth of my existing tumors.  Based on the info that we have right now, the transplant will take place in 4-6 weeks.

Unfortunately, there is no "Plan D" at this point.  We may be able to get into a clinical trial of some sort, but that's about as far as it goes.


On the plus side, Friday is the much-delayed holiday luncheon for our workgroup, which is usually held at Jasper's.  Homemade Maytag bleu cheese potato chips.  Yum!
31st-Dec-2008 10:08 am - We're BAAAAACK (unfortunately)
Welp, had my appointment with Dr. Fay yesterday.  It's back.

I have two new lumps on my head (at least I'm not having the headaches!), and one right next to where I had one removed back in July.  I'll be having an allogeneic (donor) stem-cell transplant in about six weeks, which is how long it takes to get the insurance straightened out and get the donor in and started.  I'll be out of the office for six weeks to two months again, but the transplant may be able to be done as an outpatient procedure.

I go back to see Dr. Cooper on 1/20, and will probably have to have the full run of PET/CT, MRI, and bone marrow tests again.  I'm hoping that there's a Plan D by that point (Plan A=chemo, Plan B=auto stem cell, Plan C=allo stem cell, Plan D=?????). 

Unfortunately, it looks like I have a good chance of having a graft-versus-host (GVH) reaction.  Although, as I told Dad, better the GVH than the dirt nap. ;)

In other news, we had a great Christmas!  The kids had enough stuff to fill the living room, and Jolene decided that I needed more tools (I think she's hinting at something!)  We went to the Melting Pot on Saturday with a friend of Ashli's from our church, and I'd forgotten that my wife's accent gets thicker with alcohol...

Mom, Kent, Cathy, Jason, and James all get here at various times today, and leave on Sunday.  It'll be good to see the clan, even if we do tend to drive Ashli crazy!

Happy Holidays to all, and may you have a Happy New Year! 

Less than a week until Christmas!  The night before which involves power tools and alcohol - essentials for assembling children's toys!

I got one of my presents early, though - other than a couple of small (5mm) polyps, and a number of diverticula (yes, that's a word, go look it up), my colonoscopy came back clear!  Little did I know that they blow you up like a balloon during the procedure, though, until I'm laying in recovery, and SOUNDING like a balloon that's been released...

I managed to survive driving to the periodontist on Tuesday in that massive storm that layed down a whole 0.07" of patchy ice through the DFW area.  It only took me 1:45 (that's hours:minutes) to go twenty miles.  Gotta love these natives. ;)  The good news is my gums and teeth are OK - I've just got side effects from the last chemo/radiation treatment, which I knew was going to happen.

I go in to see Dr. Fay again on the 30th (gotta get one last appointment in on this year's insurance!), and hopefully we'll be down to just monitoring from here on out!

Merry Christmas, Happy Holidays, and may God bless all of you as He has blessed us through this very trying year!

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