Saturday, June 27, 2009

A bit sudden, eh?

M: "hey, how are you?" Y: "good - how about you?" M: "all is good, but I do have cancer..."

For those of you that are on the receiving end of a conversation much like this, my apologies. It's tough to explain, as I'm no longer wary about telling people but I'm also not looking for pity or concern (and nobody's really done that except for the ladies at "The Club"). I've been dealing with this since October and I've got a sense of understanding and perhaps control. For me, I understand where I am and what's going on. For you, it's like a slap in the face! But I've got a load of long-distance friends and when people ask what's new and I say, "check out this link" they're expecting some really bad joke or bizarre website. I guess in a manner, I've fullfilled that - it's not really a bad joke, but any site talking about frozen fish sushi is bizarre!

But I can comprehend the awkward position in which I put some of you when I've not spoken with you in years and within 5 minutes I'm laying down the C-card. I guess the only thing I can say is if I wasn't as comfortable as to where I am and how things are going I wouldn't have dropped that bomb so quickly. So take that to heart and realize I am OK - I just want to let you know and this is really the easiest way to get that done.

Feel free to pass along as you desire - I'm not keeping this from anyone, just did not want to publish this on Fbook and haven't really told people at work as it's too busy and I don't have time to deal w/ some of the questions. But I'm not trying to keep it from anyone, so especially if you're overseas please pass this along and apologize on my behalf for not having notified anyone directly.

So back to the sushi - month two review is coming up on Monday. So Sunday morning I start peeing in a bottle (i'm shooting to fill three this time!). Monday is my visit and first step after labs is my bone density test. I'll put on my stethoscope and white coat and explain officially, "the bone density test is going to test the density of my bones." That's all I know but they are checking to see if there are any issues and if I should start on a bisphosphonate (a bone strengthener). If all works out well and my bones are "dense" then I am putting in an official appeal to the docs to allow me back out on the rugby pitch. The wife's not happy with that but it's going to help keep me sane. I can no longer be the team photographer. I've been doing my pushups/situps, I'm floating between 185/190 (85/86kg) but I've been doing absolutely NO cardio - so that needs to start but I definitely want to get back out there, even if only for a half.

I guess I'll know later next week. Hopefully it won't take as long as getting the MRI results - I think I know more than the docs know on that front. My back is ok, more annoying than anything at this point but they're looking at that Monday as well. So Monday is lab-rat day and I'll post more next week.

Again, thank you for understanding and remember, I'm fine - read the Blog and you'll get an understanding of what's up and stay tuned and I'll post updates! And remember, as quoted by another Clinical Trial member, "that stuff is foul!" Long Live the Sea Cucumber!

Wednesday, June 3, 2009

First Month Review

On June 2nd I went in for my first cycle checkup. I was also going in with a pain in my back that started with me putting my daughter in her car seat on our way to the airport for our return from our vacation. When the doctor heard there were back pains I was immediatly sent off for x-rays which showed no fracture or other issue. It did show that I have arthritic hips (gotta love rugby!) Blood work showed a drop in IgA levels but still high, Red Blood Cell counts and hemoglobin counts are low but stable (not getting lower). Calcium had a slight decrease and total protein was stable. AST is still high but not increasing. All in all no real change (either way). So I can't say the sushi's doing anything at this point but I'm still keeping hopes high.



Additionally, lots of you have talked about donating marrow for a transplant. The good news is I'm not in a position to need a transplant at this time. When (if) I do then it will most likely be my own cells that will be transplanted. If that doesn't work the best match will be my brother (I have confirmed we do have the same genes and the postman didn't play basketball, he's just good at it.) If he's not a match then it's up for grabs - could be anyone but most likely would not be any of you. Having said that, it may - so how do you help?

http://www.marrow.org/JOIN/index.html

This site is a marrow donor site and you should be able to register there. What this means is you may be a match for someone you don't event know. So if that occurs - I will personally buy you a beer - a really big one!

Tuesday, June 2, 2009

Traveling With Sushi

So you're going on vacation and want to bring your frozen, fishy gelatin snack- is it a liquid? Next up on this evening's episode of You Guessed It - the TSA:

"Dear sirs, I have been diagnosed with a form of cancer and am currently participating in a clinical trial that involves my ingesting a jello-like substance composed from various forms of sea life. I will be traveling between X and Y dates and would like to know the appropriate manner of presenting this material as I will be required to take it on the flight, in a frozen status. As I'm unaware if in fact gelatin is considered a "liquid" I'm bringing this to you for clarification. Although the container will be under three ounces there will be 48 containers in total, all conviniently foil wrapped with a beautiful blue logo that looks nothing like a medicine. So I am asking if you foresee any issues and how might I best broach this topic when approaching security at the airport in New York (well actuall NewArk!). Many kind regards...the patient."

The response:
Thank you for your email expressing your concern regarding the Transportation Security Administration (TSA) medical liquid exemptions at the securty checkpoint. And they then went on to paste the exact wording listed on the website regarding liquids, etc being placed in a plastic bag, limited to 3 ounces, etc - verbatim. Nothing relating to my question and no clarity as to whether or not this would be allowed or if I would have any issues.

Bottom line, I went thru security three times, my frozen sushi, twice. It was not a problem, they were able to xray it so no concerns. However, dvd players and kindle's are considered electronic devices and do need to be taken out of the backpack in advance of the xray machine. Hats off to the xray operator that recognized the kindle, "Sir - do you have a kindle also? That needs to come out of the bag as well." I then needed to put my flip-flops back thru the xray machine again (as they may have picked up some type of weapon while I was navigating from one side of the xray machine to the other.) The sushi arrived w/o issue. When we went to Disney, I was suprized to find there was no freezer compartment in the refrigerator in the room - when I called downstairs, in truly Disney fashion, "just bring it to the bell services, they have a freezer downstairs for just this need". Each night I showed up for my 4 shots of jello and they took the cooler out, I got what i needed and they put it back - gotta love the house of mouse!

I did need to set an alarm as the habit I'd built at home was easily forgotten when I got on vacation. However, I survived, as did the sushi. It still tastes like crap!

More later as I've been through my first month of 'product' and will post results from bloodwork, etc - stay tuned - same Bat-Time, same Bat-Channel!