Friday, January 23, 2009

The Obvious

In Case you haven't gotten the basic message here...if you haven't had a general physical in the last 2 years (or in some of your cases, 10 years) then get your ass to a doctor - get over the "moooonnnn river" - and get it done!

I caught this before anything serious has really happened. It's sh*tty news but I caught it early. I know people that haven't caught this until they were in a middle of a marathon and two of their vertabrae compressed and he fell like a brick (a brick in massive pain!) Better to learn what's going on now than wait till something happens and then find out it's a truckload more serious than you thought.

Go to the doctor - EVERY YEAR! Tell 'em I sent you!

Monday, January 19, 2009

Telling Friends

Ok - I've been dealing with this since late-October and have yet to really move forward on anything. I feel like I'm moving in the right direction now, having decided to work w/ Dr. Richardson/DFCI. But until now, I've only spoken w/ family, key people at work and a few, long-distance friends. This weekend, over beers and a friendly card game, I told the immediate rugby family, "I've got bad news and I've got worse news...."

Which brings up one of the tough parts (and the purpose of this space): how do you tell people and how do you explain everything.

You balance the decision to tell with the "telling" you'll have to do afterwards explaining all details as if you are the expert (even though you're just learning most of these things now.) It's not that you don't want to tell but when is the right time, how do you start the conversation and what reaction will they have? Playing cards, having beers, break in the game, break out the vodka red bull and have at it. Perfect opportunity - kind of changed the mood of the night though! But I don't remember much after the vodka (that had a splash of red bull!) Bottom line, you don't want to email someone - in some cases you can only say it over the phone - in some cases you're introducing this after "how were your hols?" There's no good time to break this kind of news and I think most people get it. But then you have to explain - and that just gets tough.

Let's take a step back - at this point I've got nothing wrong with me. Yes, I have cancer and yes it's NOT good but it's not actually doing anything to me yet. I still have to do something but at least it's not causing problems. So a lot of my talk, compared to somone that's already gone thru their transplant, done the chemo thing, etc.; is whiney piddlesh*t! That said - everyone starts somewhere. This is my way of saying, "this site is going to do a better job explaining what I'm going through, what's happened and what are the next steps."

So the bad news was I'm not playing rugby this season - and to me that's a beyotch! I'm not really worried about the disease. I know I'm going to fight it and that I'll be fine - can't say it's as strong as knowing I was going to have 1 boy and 1 girl but I'll take what I can get. But rugby was the one thing that actually kept me active, fit (i should put that in quotes) and young. Taking that away is a pain. I know plenty of people that have retired at the ripe old age of 38 or younger. But I played with a gentleman in Hong Kong who was 66 and I said then, "that's what I want to be doing!" Who knows - it's a good goal!

And so you want to help - can you find a cure for this? That would be a great help! But seriously, if you want to help, let me know. I don't have anything but when I know there's something you can help with I will definitely give you a ring. Beyond that, my family network helped identify doctors, hospitals, etc. At this point I just need to get on with this and get rid of it! I don't know how you can help beyond one thing:

Don't treat me any different - I'm still me. I can't drink as much (if you call 1.5 pints a week even a drink!) but that doesn't mean I can't live vicariously through you! At some point I will be a wreck - then don't come near me if you have a cold or some type of nasty illness. Till then, talking, laughing, joking about this mess is the best medicine.

I need to crash now - I've read this and re-wrote it once - not going to bother doing it again so if I've said something to offend it wasn't intended.

As for help - I would like everyone's help - I just don't know how you can help right now. Thoughts are good, prayers are fine - fruit cake...let's send it around as a test for 6 degrees of separation - how long before it reurns to you? Seriously though, there's nothing you can do. Should a need arise and you can fill that need, bottom line, you'll be called. Otherwise, all I can ask is to realize I haven't changed - will be putting up w/ a lot of sh*t over the next year or so but haven't changed - meaning, don't treat me different. I can't play rugby, and that's killing me. I can't drink more than 3 units of alcohol a week (1.5 pints mate - 1.5 pints!) and that's killing me. I'm not on oxygen, I'm not in a wheelchair, I'm still me and just want friends there and things as normal as they can be for this juncture in time.

Again, I apologize if I sound like a whiner/whinger/mr pissypants! I'm not like that but the whole concept of telling people is a double edged sword. I'm not holding out as I don't want to tell YOU - it's the whole process of telling that's a pain. But that concept has now been talked to its fullest. Many thanks for listening and cheers for now.

Tuesday, January 13, 2009

Timeline

The following is a rough timeline of what happend and when.
9/4/08 - annual physical (Dr. Morledge) w/ bloodwork - identified total protein level of 9.2. Doc proceeded to ask if I was taking any supplements, am I having any bone pains, etc. This blood spike (and the recurring spike as we move forward) was the first identifier that something was going on. The protein spike ended up as being an MGUS (monoclonal gammapothy of undefined significance).
9/24/08 - repeat blood work - total protein level 9.0
9/24/08 - frantic call to family doc (Dr. Ayers) who opened up a wealth of knowledge and details from a friend's (a very educated friend's) perspective.
10/2/08 - referral to Hem/Onc (Dr. Spaccavento) - bloodwork identified protein level of 9.4
10/6/08 - 24 hour urine test - no protein present, nothing alarming.
10/11/08 - skeletal study (x-ray) done - nothing of specific pertinence reported
10/21/08 - bone marrow biopsy done (Dr. Spaccavento) - general take - 30-40% of plasma cells identifying as plasma cell myeloma or multiple myeloma
10/21/08 - start the calls to family - the "network" gets started and I've got contacts at all the major health/cancer centers worldwide - gotta love the network!
11/24/08 - Cornell Weill - Dr Niesvizky - consultation
12/15/08 - Sloan Kettering - Dr Hassoun - consultation
12/16/08 - PetCT scan done at Lenox Hill Radiology - nothing specific identified in report
1/12/09 - Dana Farber Cancer Institute - Dr Richardson - consultation

  • identified increasing anemia rate
  • identified chromosomal issues w/ 17, 13 (not brought up by anyone else)
  • noted potential thinning of bone in sacrum and wanted to evaluate node on thyroid to identify if that may be causing any bone thinning.
  • suggested protocol at DFCI but can't participate due to distance
  • recommended starting RVD (Revlamid, Velcaid and Dexomethozone) off protocol.
  • want to check w/ Dr Jagganath (St Vincents) to see if he has a protocol in place using RVD as a backbone. Setting appt w/ Dr Jagganath.
1/21/09 Meet w/ Dr Spaccavento - need to schedule MRI (look at spine, pelvic region and saacrum). Also got scrip for bone strengthener (bisphosphonate). Not yet started that process.
1/23/09 Pneumovax vaccine (protect against pneumonia I believe)
1/24/09 Pnuemovax vaccine kicked my proverbial *ss. "the following side effects may occur..." - they all did!
3/9/09 Met w/ staff at St Vincent's - initial visit, outlined time frame for starting the RVD regimen. Expect process to start in 2-3 weeks.
3/12/09 Call from St Vincent's re; lab results. Levels weren't crazy and they found discrepancies in some of the paperwork (additions to 17p chromosome, not deletions, low iron levels, etc.) and they want to investigate before making a decision. Spoke to Docs at DFCI, still of the opinion that something exists, set another meeting with St Vincent's.
4/8/09 Tests at St Vincents - most levels are normal, spike in protein and first spike in calcium levels. Recheck on 4/10 to consider going on Zometa.
4/10/09 protein back down, calcium in normal limits - consider new protocol being implemented at St Vincents.
4/21/09 Appt at St Vincent's to sign protocol/clinical trial paperwork and have initial baseline tests done: biopsy, 24-hour urine, skeletal xray, bloodwork, etc. Based on these tests I'll be able to start the protocol.
5/5/09 Got first package of TBL-12, the 'product'. Tomorrow I begin taking the sushi-shots!
6/2/09 first month review, bloodwork, check posting from 6/3/09 for details.
7/15/09 First time getting Zometa - bone strengthener - hit me like a truck!

8/10/09 DFCI follow up visit and IGA counts hit 4k for first time.
9/21/09 SVCCC follow up visit and IGA counts hit 4k again
10/19/09 follow up visit at SVCCC - although IGA was down to 3.8k TotProtein and Calcium both spiked - moving to an RVD regime
10/30/09 Begin Cycle1 of Revlimid, Velcade and Dexamethazone.
11/20/09 Begin Cycle2 of RVD - massive drop in IGA and Lambda numbers - into normal as of Cycle2
12/11/09 Begin Cycle3 of RVD
1/1/10 Begin Cycle4 - only VD this time in prep for harvesting
1/29/10 Start of harvesting - take Cytoxan
2/3/10 Neupogen injections begin - carry on through 2/7/10
2/5/10 surgery to insert catheter for harvesting
2/8/10 harvesting begins - collect 9mm t-cells in first day (target 10mm). Two days of harvesting total. Also, cold from that weekend develops into a light fever, spend night at SVCCC to get antibiotics and monitor to make sure it doesn't develop into Pneumonia.
2/13/10 hair begins to fall out - finish the job on 2/14/10 with my clippers - now bald!
3/3/10 neuropathy still bothering me (apparently from the Velcade).  Been taking Lyrica, added Nortriptyline and was given a pain med, Delaudid, to assist.
3/8/10 Started Maintenance cycles consisting of Rev (25mg)/Dex(20mg), 21 days on, 7 days off.  Got off the Delaudid as soon as possible - making me too ditzy!  Keeping on Lyrica and Nortrip - see posts for details
5/3/10 Started 3rd cycle of maintenance, dropped Dex to 10mg.  Still having PN issues but no longer pain (more numbness)