As we always prove, it truly is a small world.

For those that know the family, it's difficult for us to go many places without having some bizarre 'small world' story. So it's no wonder that it happens now.

Saturday night, out with friends at an Indian 'fusion' restaurant (Bombay Talkie). Someone in the booth next to ours gets up and the person next to him has to stand as well. When he stands he turns and we both look at each other an do a double take:

"Hi Doc - how are you? My numbers came back yesterday and they dropped significantly." Idle, brief chit chat ensues, "I'll let you get back to your dinner, great to see you."

Our two friends are wondering a) you're on the West Side of town, how do you know someone and b) doc? I then had to explain that the person sitting directly behind our friends was the same person that extracted a piece of bone marrow slightly larger than a large grain of Basmati rice from my upper ass just last week. You don't expect to see that doctor out at dinner. But when you are part of our family, it becomes common place.

I'll have final numbers tomorrow and will post status after my first cycle of chemo.

Yin 5 - Yang 0

During my treatment yesterday I asked what I should do about the Zyrtec as I've not had any of the scalp itch but I have been ungodly tired and wasn't sure if that may have something to do with it. They told me I could stop and only use it when I felt the scalp itch coming but I potentially may not need it as the Revlimid reaction is usually only for the first four days. So last night I didn't take the Zyrtec - nor did I get much sleep!
I awoke around 0130 for a potty break. When returned to bed I closed my eyes and rolled alot and around 0245 I started reading my book. Around 0400 I tried to go back to sleep and I was up about 2 min before my 0500 alarm went off. I'm not tired now but expect I'll be a wreck tonight! I wonder if I can use the 'quiet room' at work today!
One day I'll get my yin/yang balance back!

It's now time for the penguin on your Tele to explode!

For those of you expecting to find a Monty Python blog, my apologies - I have been told my blog is quite funny but I would never endeavour to think it might rank up there with the MP. This blog covers my diagnosis of Multiple Myeloma, the fact that it has prohibited me from playing rugby, drinking incessantly; it has caused me to eat some miserably horrid pacific-seafood concoction and have myself poked/prodded and tested for quite some time now. Having said that, it is time for a bit of comic relief in the blog. So this next bit has absolutely nothing to do with my treatment or diagnosis - it was just something I found funny and appropriate.

First - what is the etiquette in the cancer treatment center? I watched one lady, making her tea at the coffee/tea/water/snack counter in the waiting room spurt creamer across the counter, twice, only to find out she's waiting for an appt that isn't till tomorrow. I watched a second lady try to 'not' be intrusive while she got her tea during the time the other lady was making the mess. I was having coffee and was able to sneak in and trigger the Kuerig (due to my intimate knowledge from my folks house) and get out of the way. Apparently not in time to get out of the way of the spurting creamer. I was holding my jacket, saw the creamer spurt and did a quick lord of the dance back and out of the way. The lady apologized and I pointed at my legs and the floor and said she missed me - she pointed at my jacket and said she didn't! all down the front of my brown suit-coat - at it's 801 (I've not yet started my day!) Contrary to popular belief, the 'roids didn't take over and I was quite nice (my treatment for the roids was starting in 15 min so today probably would have been a different story! :)

Second - compliments of Pat's father - I had just returned from the hospital and this caught me as quite funny!

A sweet grandmother telephoned St. Joseph 's Hospital. She timidly asked, "Is it possible to speak to someone who can tell me how a patient is doing?"
The operator said, "I'll be glad to help, dear. What's the name and room number of the patient?"
The grandmother, in her weak, tremulous voice, said "Norma Findlay, Room 302."
The operator replied, "Let me put you on hold while I check with the nurse's station for that room."
After a few minutes the operator returned to the phone and said, "I have good news. Her nurse just told me that Norma is doing well. Her blood pressure is fine; her blood work just came
back normal and her physician, Dr. Cohen, has scheduled her to be discharged tomorrow."
The grandmother said "Thank you. That's wonderful. I was so worried. God bless you for the good news."
The operator replied, "You're more than welcome. Is Norma your daughter?"
The grandmother said, "No, I'm Norma Findlay in Room 302. No one tells me shit."

0 mph

The best response to my prior post was "HULK ANGRY, HULK SMASH THINGS!" After all the JerseyBoyz and Goodfellas on Sat Night I was definitely feeling that way (it was the pint of Guinness that finally calmed my nerves!) But as they said in the '70's - what goes up....must come down...HARD!
It's a bizarre, mixed, feeling to have one side feel like you could successfully fight a bunch of out of shape mobsters and the other side know you need a nap (at the same time). I think this is part of what has put my yin and yang out of sorts. I'm sure others will be quick to point out that I've always been imbalanced but I seriously was in bed by 830 on Sunday and around 9 last night - totally without function - just drop dead tired. I'll get two paragraphs in my book before I fall asleep hard (not 'drift' but 'DROP' to sleep!) Could this be the Zyrtec and other things causing this or is it just the Rev - we'll have to ask the docs and nurses. On another note, I've noticed a tingling in my right foot, calf down to ankle so need to confirm that's not caused by the neurapothy. Again, will check w/ the docs - noting here for posterity sake!

90 MPH

So the Dex is definitely kicking in. Where last weekend I was unable to notice a difference, the last few days it has most definitely been noticeable. My tipping point, or threshold for stupidity has dropped dramatically. If, on a scale of one to ten, with one being the lowest, I would usually trigger an insane rant (or muffled naughty word) at a level of 8. As of yesterday I believe that level has now reduced to .01.
Delivery bikers are my nemesis (I have the light you ignorant $&@&$!). Taxi cabs are a close second. Some clients at work have recently joined those ranks.
But on a serious note, I find myself blowing up more quickly with the kids. I'm trying to closely monitor as part of me is wanting to make sure the kids understand there are boundaries for what they can and cannot do. However, if my level of ptlatience has decreased then I need to make sure I understand that and deal accordingly.
To be clear with everyone I'm noting it here as it's something on my mind that I'm trying to monitor to keep balance. It isn't a problem and I don't need any assistance or advice. As I said at the very beginning, it's my post to rant and rave and if you find it interesting then great. If not, apols and I'll send you the link to Brittany Spears' blog!
That's all for now!


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Today's treatment is brought to you by...

Nothing exciting today. I did get a little background on the numbers I'm watching for now (vs what I've been monitoring more recently). The concern now is with the WBC counts (antibodies), the hemoglobin/RBC counts (good blood) and platelet counts (clotting ability). I'm tracking these in an iPhone app so I can at least stay aware of where I stand.
I arrived today at 0730 and it's currently 0906 and I've got another 20 minutes or so left on the IV. So my thinking I can be in and out of here by 9 was a bit off.


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Day 2 of Treatment

For those of you that have played online shooter games with my brother, you know what it's like walking around, KNOWING you're about to be nailed but not knowing when. You hope you get a chance to get him but you also know there's no way in h*ll that's working out. So the day after treatment 2 I'm walking around waiting for my brother to ping me with a clean head-shot just when I think I'm doing pretty well. After the first day of treatment, expecting one thing and getting another, I'm walking on the proverbial tight rope wondering what will happen today or the next day.

I slept well last night - didn't really feel like getting up. I no longer have this acne rash across my forehead like that girl from the Star Trek DS-9 or Voyager series (at least it's not as pronounced). I do however, feel a bit speedy and a bit dizzy. I'm working from home to be cautious and will try to get a nap if possible.

One other reaction not mentioned in last nights post was a rash, on my lower spine, about 8 inches in length. I hadn't felt it and it wasn't itching (that was the head). So the Doc recommended Lotrimin for the rash and asked that I monitor. For those not in the US, I'm not sure if you'll recognize Lotrimin or it's intended use. It's for jock itch - better defined as fungus around the 'package' that causes itching - usually acquired by those with an impetus for sport but not cleanliness (see prior post for reference to cleanliness, godliness and timeliness!). Now where I am so inclined to sport (and killing me not being able to play rugby) I am also so inclined to make sure that 'area' is clean and dry! I have NEVER had jock itch.

So if you come to visit and happen to be rummaging through my medicine cabinet, the Lotrimin is for my BACK, not my PACKAGE!

I'll keep everyone in the loop as things progress - be sure to stay tuned to my next "live" broadcast which I'll try to do Friday morning (it will most likely be very boring so have some coffee if just getting up or a beer (one for me) if you're just getting home from work.

The Early Bird

"The early bird gets the worm" is a truism worth noting and remembering. For my second day of treatment my schedule was as follows:
- 11:00 skeletal study (xrays)
- 14:00 labs
- 14:30 bone marrow biopsy
- 16:30 treatment

It's now 17:35 and I'm sitting in a room awaiting a nurse to come in and plug me in for my chemotherapy. I'm going to post this now so for those of you who got TaiTai's email on how to setup the RSS feed you can almost experience this realtime!

When I arrived this morning the radiology group was rip roaring and ready to go. My appointment started promptly at 1100 and I was done within 20 minutes. My next appt wasn't till 1400 so I had my labs drawn early, now I didn't need to be back till 1430.
I ventured around Union Square to keep myself entertained, got a bite to eat and finally decided to head back early. I was a bit over an hour early but surprisingly they put me in a room to see the doctor at about 1410 - I was early! And that's where my luck ran out!
The Doc didn't arrive to do the bone marrow biopsy till 1535, then we needed consent forms -the list of interruptions continued. When we finally got to the point we were all waiting for - my lying flat on a table while he sticks a rather sharp instrument into my pelvis to extract a piece of marrow and fluid - it was just after 1600. The marrow we got without complication but the fluid wa a bit more difficult. He kept having to go in deeper, to no avail. He finally had to "re-position"

**** LIVE UPDATE ****
1807 and the IV has just started. I've been informed that I have an hour of hydration in addition to the chemotherapy. I may get tobtuck the kids in.
****************
so repositioning means he has to take another jab - and this time he finds his mark! It's tough to describe the biopsy. You know where your skin is and even with anesthetics, you can feel when someone is under your skin - they're just not supposed to be there. And the "pop" that goes along with the removal of the marrow is just enough to grate your nerves. But the removal of the fluid is like a thousand nails on a chalkboard while liquid fire is shot down your nerve endings. The pain is numbed but you know it should be hurting!
Here's a quick pic of the bone marrow biopsy tool kit. I meant to get an after shot (blood everywhere, 3 stained slides, container with marrow) but I forgot.






The round container with the white lid is where my marrow ended up. I have no idea what everything else was being used for (and can't see it on this screen)

WAIT - U CAN ORDER FOOD?
one of the orderlies just came by asking who ordered the Pad Thai. I was so taken aback I just said no. I should have said yea as I've no clue when I'm getting out of here! Remember my comment about the chair vs the room? Well I'm in a room again today as the chairs are all full. Here's the IV tool kit (is anyone bored with my pic and play by play?)



And here's my IV that had to be done twice as she missed my vein the first time!


Notice the band aid at the top. That's the first stick. The iv is now in the vein at the bottom left of the wrist. I'm signing off for now but if anything else funny happens I'll add to the post.
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Son of an Itch!

If you've not read the previous post, please do as I wouldn't want you to get out of order and not understand the situation, as it stands, at this moment. Timeliness is everything (and right up there with the fabled cleanliness and godliness!) Which is why I'm posting about my first day of treatment (prior post) and the reactions I had to the treatment (this post) on the same day. Timely, eh? The potential reactions I mentioned before was the list of items for which I was forewarned. Here's what I took out of Friday's meeting (and worried over the entire weekend).

Revlimid will make you drowsy, take it at night. RBC/WBC counts may drop, you can't do anything about it till you know the counts which means next visit, so don't worry about it now. Velcade will make you constipated - focus on spinach, broccolli and those other 'moving' veg. Dex will knock your socks off, make you really speedy, you'll be looking for things to do, kick the cat (they actually said that), etc. Expect to be wired Sat thru Sun and crash hard on Monday. Do the Velcade and Dex in the morning

I FELT COMPLETELY NORMAL - I NOTICED NOTHING - AT ALL

Until Sunday around 4pm.

I took my daughter to her swimming class on Sunday. It was my first adventure actually in the pool at the 14th street Y. Afterwards we went for Ramen across the street - really good, Japanese style Ramen - Mia Loved it. We then went to the playground and I noticed my head and my rectal area (I couldn't just say butt) both itched. Yes, itched.

First thing through my head, "oh my god - my kids swim in that pool every week!" Second thing through my head, "i can't have been allergic to the Ramen - I'm not really allergic to anything". When I got home I took a shower to be safe and didn't notice much of a change. But it wasn't till 33o in the morning when I woke up scratching like an old blood hound with the mange. I couldn't stop - it was killing me! I had a glass of milk and went back to bed. I tried to get up and work out but that wasn't working for me. I went to work and was fine (again, no crash) but if I just touched my head it turned into a 5 minute scratch-fest complete with bouncing leg (if you hit my ear just right!)

A frantic message to DFCI informed me that this is the Revlimid - nothing to be worried about. A later message from a DFCI RN told me I could take Benadryl, 25-50mg - which put me out, like a light, in the third inning of the game (which is probably a good thing). I took another 25mg at 2am and at this moment I'm hoping SVCCC has something more for me when I arrive there today as this itch is driving me crazy!

So my biggest reaction to the treatment? It's a son of an Itch!

1st Day of Treatment: Part Deux

It's just about 30 minutes to hop the bus to the subway for a transfer to get over to SVCCC - which is why, when I guesstimated 20 minutes for the expedition, I was about 5 minutes late. I guess being tardy for your first day of treatment isn't on-par with expectations -- duly noted. And to quell any fears, I did receive my comeuppance.

First - The treatment area has reclining chairs, personal TVs and all the necessary accoutrement's to make this part of your experience as enjoyable as possible. The nurse asked if this was my first time receiving this treatment to which I virginally replied, "yes". To which she responded, "I'm going to put you in a room." My immediate response, again, virginally, was, "that's OK, I'm fine with the chair." And her rapid response was, "that's OK, I'm still going to put you in a room,"
Me: (wondering about my virginal situation)"why the room?"
Nurse: "I have oxygen and everything else I need in that room"
Me: "uhmm, excuse me?"
Nurse: "don't worry, we hardly ever need that stuff"

And in 15 minutes I was on a bed, with an IV in my arm awaiting the loss of my chemo-virginity.

The god of chastity belts reared his head in the form of Mrs Hannibal (yes, Hannibal) who informed me my insurance company had not yet agreed to pay for the chemo treatments so they regretfully inform me they may not be able to provide my treatment today. One frantic phone call revealed there was no pending approvals or rejections at the insurance company. Apparently my age and the chemo didn't go together so, internally, there was some confusion at SVCCC but bottom line it was cleared up and I was no longer a chemo-virgin!

The drugs (which I've outlined previously) and their warnings - life is a bowl of disclaimers!
Revlimid - nausea, tiredness, drop in RBC/WBC counts when the treatment starts.
- take this orally for 14 days and then skip for seven days.
Velcade - nausea, dizziness, constipation
- take this, via IV, twice a week for two weeks, then skip for seven days.
Dexamethazone (Decadon) - steroid - RUN FAST, WORK HARD, STRONG LIKE BULL! I was warned that I better have something to do on Saturday as I'm going to be extremely 'speedy' on Sat and Sun and then will crash hard on Monday. I was warned to tell everyone, it's the drugs, not me. Where I may have never before kicked the cat, I may actually kick the cat (mood swings could be fierce on steroids).
- take this, via IV, in conjunction w/ the Velcade.

More on actual reactions later.

This is only a test

Trying to see if I can upload text and photo from the iPhone (yes, they have an app for that!)



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First Day of Treatment

Today was the first day of treatment - I'll write in more detail later, for now, realize that my posting to my blog at 0130 doesn't mean the Dex has really kicked in - contrary - we are hosting a Halloween party tomorrow night so I have been up making 3 trays of Risotto (and will have to cook the meat tomorrow). I don't feel any different and feel like I can crash w/o problem.

But I'll post more detail about today's fun events later! Just wanted a place holder for this first day.

...3 months later...

So in a book, or in a film, there's that moment in time when the writer/director realizes that if they really included that uneccessary time period between plot points it would take away from the overall effect of the movie. It would be boring, uneventful, useless patter signifying nothing (ok - went off on a bit of a Shakespeare tangent there). The events during that time period were of no consequence to the overall, bigger picture. Hence, I was busy (as h*ll), it was summer (we played) and the kids are growing (to be a pain in the...)

...3 MONTHS LATER...

There truly hasn't been anything of consequence in the recent months. I've been taking the sushi, acting as a pin cushion and donating my circulatory fluids to tests and more tests. The sushi surprize is having no effect on me - it's not making me sick and it's not making me better. My numbers have been floating up and down but unfortunately, the numbers of biggest consequence have not been going in the right direction.

The type of Myeloma that I have is IGA Lambda. My IGA numbers, which should be 70-400, are averaging in the high 3,000's. My Lambda numbers which should be 6.1-29.7 are averaging in the 350 range. I hit the IGA 4,000 mark last visit and we decided to watch closely on this visit. Even though I hit 3,800 my total protein count (act: 11.9, range: 6.9-8.9) and calcium counts were both high so we are moving forward with the RVD regimen and getting off the sushi.

Su-Su-Sushi, Goodbye.... This evening's return did not find me loaded up with 112 caplets of foul smelling, regurgitated ocean life. I will be receiving a prescription of Revlamid and will begin my dosing in approximately 3 weeks. The dosing will be 2 weeks on, 1 week off, which will comprise one cycle. The Revlamid is taken orally for 14 days on, 7 days off. The Velcade and Dexomethazone is taken every three days (2x per week). The Velcade is taken via an IV (30 min in a chair) and the Dex can be done either via IV or orally. This is done for one week on, two weeks off .

This continues for 4-6 cycles or till my numbers reach a point where we can begin harvesting. The optimum result is the therapy causes my numbers to reduce down to normal, and, if lucky, potentially negate the need for a transplant (at this time). Otherwise, we will continue till my numbers reduce as much as they can (and reach some type of plateau.) At that point we'll harvest and look at doing the transplant.

While this may seem to be more serious in nature, I guess, it really is and has a proven track record at reducing the aspects of my disease that are most troublesome. Revlamid and Velcade are both attacking the cancer and problem antibodies. Rev is a derivative of Thalidomide (see previous posts for more detail). The Dex is there as a steroid to help boost energy, etc. I'm also being given something else (the name escapes me) to prevent shingles. The biggest issue I need to worry about is neuropathy (tingling/loss of feeling in toes/fingers).

So nothing more to report at this point. I'll do my best to keep the time between plot points more interesting!

Ok - work/kids/vacation = busy! promise to post something soon but everything's good (just way too busy!)

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.

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.

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!"

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!

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!

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!