Some good news, and some bad news

 Edie  2 Responses »
Aug 142007
 

Well, Edie’s creatinine has fallen back to 3.5, which is good, but her hemoglobin is continuing to fall, and is down to 8.4, which isn’t good.

So the oncologist wants to keep her there for another day, to monitor her further, while she continues pumping additional fluids into her, and starts her on a Velcade + Doxil treatment regimen (Velcade today and Doxil Friday).

Doxil + Velcade has shown some efficacy, as indicated in this 2006 ASH abstract, so we are hoping for the best.

In the mean time, I am getting some more personal items for her, including her computer. Hopefully there is a wireless access point some where for her to log on to the internet. If not, she can at least watch a couple of DVD’s.

One good bit of news is, she has a private room, the unfortunate part of that is, I believe that perk is afforded all cancer patients.

NOTE: As of  11:30 AM Edie does have internet access (albeit a very slow and inconsistent connection), but you may be able to contact her via email or just call her cell phone should the email fail. 

 Posted by at 10:00 am

Never in my wildest nightmare

 Edie  No Responses »
Aug 132007
 

did I envision Edie’s appointment with her oncologist would begin with

Your creatinine is up to 4, and we need to admit you to the hospital immediately, to pump you full of IV fluids and then begin treatment with Velcade. Oh and your hemoglobin was down to 9.8.

That wasn’t exactly how it happened, nor were those her exact words (she does have a better bed side manner than that), but that is pretty much all I remember.

So I ran home, packed the few things Edie thinks she’ll need to get through the next 24 hours, and I’m about to head back out on my bike (we drove separate cars to the oncologists office, and I don’t want to leave one there over night) to take here the things she needs.

The oncologist was optimistic she will only need to be there 24 hours.

I sure hope she’s right. This just isn’t any fun anymore!

 Posted by at 4:23 pm

It’s been a lousy week

 Cycling, Edie, Golf, Life  2 Responses »
Aug 112007
 

I don’t know how others manage, but for me it’s just getting harder and harder. Ever since Edie informed me of her latest test results on Monday, I have really been in a stupor.

Just getting out of bed this morning was a chore, and I didn’t even enjoy the round of golf with the Eldorado mens club yesterday.

Even riding my bike offers little enjoyment, although when I am on my bike I seem to be able to forget most of my troubles, as I struggle to climb a hill or just to keep up with the other riders. It also helps in controlling my weight, as I have this almost uncontrollable desire to eat. So I force myself to ride.

Still that only lasts for about 3 or 4 hours a day, after which reality sets back in. It’s one thing to be sick yourself, and deal with the consequences, but when someone you love is sick, dealing with that also, well….. that’s a whole ‘nother issue.

Edie does manage to put on a happy face most of the time, as I do, but I know how that is. It doesn’t mean your problems aren’t in the back of your mind constantly, it just means you don’t want to burden everyone else with your problems, and have them feeling sorry for you.

I know this post doesn’t sound much like I’m trying not to bother everyone else with my problems, but I just had to get that off my chest.

Oh well, such is life! Enough with the frustrations, now it’s time to get ready for my bike ride.

 Posted by at 5:01 pm

Even winning my golf match today didn’t help

 Edie, Golf  2 Responses »
Aug 062007
 

Yes, I won my first round of match play in the Eldorado Men’s Club golf Flights Championship, but not even that could improve my mood after Edie called and said her urine protein jumped from 399 mg/24 hrs in November of ’06, to 2288 mg/24 hrs in July ’07.

That isn’t good, and means the Revlimid and Dex isn’t working. And I had such high hopes. :(

Now we’re faced with a decision – Velcade and Doxil (AKA Adriamycin), Doxil alone or a transplant, none of which are good choices, at least in my opinion.

Anyone who has ever read this blog, or posts of mine else where, know that I don’t like the idea of a transplant, except as a last resort, and I don’t like Adriamycin much more, but those are the choices.

So right now, Edie’s oncologist is going to contact Dr. Durie, a myeloma expert at Cedar’s Sinai, to get his input, plus she is going to have a MUGA scan (to test heart function in anticipation of using the Doxil), and then she has another appointment with her oncologist next Monday to discuss the options.

This getting old *&#@ isn’t what it’s cracked up to be. It’s one thing dealing with your own illness, it’s a whole other experience dealing with the disease of a loved one. That’s a lot more difficult.

Needless to say, I’m not a happy camper. :(

 Posted by at 7:06 pm

Team in Training

 Cycling, Life, My MCL  No Responses »
Aug 052007
 

I met the participants for this years Team in Training, El Tour d’Tucson ride for which I am the honored team mate.

Even though I coached the ’05 Solvang team, and have met individuals from all walks of life touched by cancer, I am still amazed at the wide cross section of individuals that choose to participate in these events.

I know everyone has their own particular reason for participating, and this certainly isn’t something you would wish on anyone (ok, so maybe there are a few exceptions), it’s good to know you’re not alone in your struggle.

And on a lighter note, I got the Lexus back yesterday, and I think it looks damn good. The guys at Earl Scheib, in Bellflower, did a good job. I will let you be the judge though (click on the photo for a larger view).

The color isn’t the exact match for the original, but without a back to back comparison, no one could tell. You also have to remember this is a 15 year old car, so it’s doubtful even Lexus could have matched it perfectly.

And besides, I never really like the original color anywaze. Now it’s just a little more to my liking.

I plan on leaving it in the garage for the next 10 days or so. I’m not supposed to wash it with anything but water for the next 10 days, to ensure it dries properly, so rather then worry about tree sap or bird ^&%$, I’ll just leave it in the garage to be sure it’s totally dried before taking it out into the environment.

Besides, it needs a good rest after all it’s been through the previous week.

 Posted by at 2:06 pm

It must have been the Oregon wines

 Food & Wine, Life, My MCL, Vacations  3 Responses »
Aug 012007
 

Just got the results from this mornings blood test, and while my absolute lymphocyte count is holding steady at around 88 thou/cumm, where it has essentially been for the past 10 months, the real surprise was my hemoglobin jumped to 13.6 g/dl from 12.5 g/dl last month.

No wonder I felt so good this morning on my bike ride. That should also put me in proper spirits for my first ride with the Team in Training Tucson Team this weekend.

Of course that could be an error, but I’ll choose to believe otherwise, at least until I see next months results.

So this morning I checked the local wine shop (The Wine Exchange in Tustin), and they had 6 bottles of the 2003 Domaine Serene, Mark Bradford Vineyard, Pinot Noir left (The winery was sold out). I bought 3 of them. It was one of the wines we had at the Domaine Serene wine dinner, and it was excellent. Not as good as the ’02 Monogram (so you can imagine how good that one was), but it was a lot less expensive, and I did buy a bottle of the ’03 Monogram at the winery.

They also had the 2005 Scott Paul, Les Paulee, Pinot Noir, another excellent wine, which we tasted at the IPNC, and I bought 2 of them as well.

Can’t wait to try them again.

And the other bit of good news is Earl Scheib is going to fix the side of the car, for $1,150.00 worth of damage, including painting the entire car. I was expecting double that, so I was pleasantly surprised. It will be ready Saturday.

So things are actually starting to look up again, and getting back to normal.

I actually even enjoyed going back to work yesterday.

 Posted by at 2:05 pm
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