Monday, July 27, 2009

Tracking Data

For anyone interested, I've created an Excel spreadsheet to help track my bloodwork based upon the reports I get from SVCCC on each visit. I'm happy to share this with anyone interested. The data entry is based upon the reports I get from SVCCC but the basic data remains the same. I'm not a developer so you'll have to bear with the fact this is a very rudimentary spreadsheet/database to track your numbers. The entry form copies/pastes the data into a data worksheet and has conditional formatting to identify hi/low data (based on the reference range used by SVCCC). I've pre-built charts for IGA/Lambda, RBC/HCT, AST, and TotProtein/Calcium levels. The charts can be easily changed and updated with a basic knowledge of excel.

I'm happy to help anyone that needs it in setting up the sheet for themselves. The Myeloma Manager essentially does this but doesn't have the flexibility of charting that can be done in excel. Also, the Myeloma Manager is not available on a Mac. I'm hoping that someone can get this to work on a Mac as well. Please pass along my bloglink to anyone you think may be interested in this. The data is going to be primarily relevant to someone w/ MultMyeloma but any blood cancer could adapt this to their use.

My goal would be to take this kind of piece and make it into something that can be updated and placed on an iPhone app (see last post!) Any SDK types that want to play around let me know. I don't have a Mac so I can't develop it (but happy to try if anyone wants to give me a Mac!)

Thanks all - more info in the next week or so after today's 3 month check up.

Sunday, July 26, 2009

Track Your Numbers

Most of you watching my blog are friends/rels/etc. and for that I am greatly appreciative. For those of you that actually have this disease and are just looking for my inane comments, then hats off to you! And this post might be helpful. I just found an app for my iPhone called myCheckUp which allows you to track information and then chart that information over time. If you're on a diet, tracking sugar levels, etc this is very helpful as it tracks values intra-day (multiple data points w/in a day's time). For those of us tracking reports weekly/monthly it's not as friendly but it's a good start, having something that is handy to keep track of the specific numbers of concern to you. I've sent the developers an email w/ comments to see if we can get them to focus on a few items: option for multi-day view/data entry, ability to maintain ranges to identify hi/low values, ability to include more than four custom fields (or increase the number of base markers they maintain) and, finally, the ability to import data or enter from a computer (and not have to enter everything on the iPhone.)

I'm not touting the iPhone (ok, i'm a HUGE buyer of the iPhone) but this kind of mobile ability to maintain data (when visiting another doctor, etc.) is key. For those w/ an iPhone that are interested you should be able to link to the app here:
http://www.vidaone.com/mcu_iphone.htm

I hope you find this useful and am happy to offer any assistance to anyone looking to bring in this data. The Myeloma Manager (thank's for the reference Dad) has been great, albeit a little clunky. Bottom line it gets the job done but is stuck on the PC and can't be mobile. This app opens another door (unfortunately only a crack as it's limited in what it can do but hopefully my powers of persuasion will convince them to do this!) If anyone is a developer for iphone apps and would like to work together on doing something I'm all ears!

More later - thanks for listening.

Saturday, July 18, 2009

Can you say, "Hit By A Truck?"

On 15 July I started Zometa. Zometa is a bone strengthener. As I've explained previously (but will indubiously outline again here) Myeloma takes over the bone marrow and, when active, actually starts eating the bone itself, along with doing other really nasty things that you'll have to go back to a previous post to understand. BOTTOM LINE, WITH ME, - IT'S STILL ASYMPTOMATIC, OR NOT ACTIVE (that part put in for my wonderful, worrying mother).

Where the Docs can help control other issues brought on by the disease chemically, SHOULD something happen w/ my bones there's no real no fix. So the Zometa is used to strengthen my bones and to help avoid any issues that may occur. You'll all be happy to know that Zometa is also used for Osteoporosis (insert "you're getting old" joke here). Zometa is given intraveneously and I was warned that I will feel side effects in the first session, less so in the second and in the third I probably wouldn't notice. So the first thing they told me was expect to be feverish w/ flu like symptoms for the first 24-48 hours. They didn't tell me it would feel like I just got hit by a truck!


I was told to hydrate that night of so I plowed through 3 liters of H2O before bed. I woke up, felt fine, did my situps/pushups and went to work. By noon it hit me. My back and shoulders were killing me like I'd played rugby that weekend and had been stuck at second row! And yes, Pat, like my ususal out of shape performance, "too winded to run"-rugby. But I must have made a few tackles as my shoulders were killing me! So I got all the pain with none of the game - miserable.

As far as numbers are concerned, I'm continuing to be anemic where my RBC and HGB counts are lower. This is normal as the bone marrow creates the red blood cells and hemoglobin and I've got this rogue protein that's taking over my marrow. So, being anemic would cause certain issues: fatigue, problems w/ bleeding, etc. I've got none of these - well, correction, I'm at work by 8, getting home just before 7 and have a 5 and 2 year old. I am fatigued - but I don't believe I'm any more so than what you would expect in that situation! So, in short, I'm not feeling any of what they say I should be feeling - so that's good.

That's it for now - any questions? Post a comment (and the sushi is still foul, the worst is when you're slurping it and some of the melted ice drips down your chin and onto your dress shirt, "daddy, you smell stinky!"