TBI Simulation

Just got home from my TBI simulation... It was pretty interesting (maybe because I haven't done any radiation yet). They took a caliber like tool and measured my body from two different angles from head to toe. They then took me back and took two x-rays. I then went to be outfitted on this stand up positioning device that consisted of a couple of handle bars and a bicycle seat. So, basically, I'll be getting the TBI standing up with the support of a nicely cushioned bicycle seat and hand bars to support me while I get zapped. I'm due to go through 8 sessions of TBI. The first 5 will be without any type of shields to protect my organs. The last 3 I'll have a custom designed lung shield with strategically placed holes based on where the tumors are in my lungs. The reason for the shield is 5 sessions is the max my lungs can take being unprotected (without causing damage). The last 3 sessions will protect my lungs but let in tiny beams of radiation through the holes exactly where my tumors/scar tissue is. The shields will be designed by a specialist at U dub based on my latest CT scan results.

According to the nurse, I can expect possible nausea during the sessions and after. She also mentioned I might get a "burn or tan" which in my eyes wouldn't be a bad thing as I'm getting pretty pasty these days ;). And finally, I can definitely expect major fatigue which will be exacerbated by the following Cytoxan and VP-16 high dose chemo's.

That's it for now... I'm going to try not to think about the Hodge tonight as it's Thursday night and My Name is Earl, The Office and 30 Rock are on (not to mention It's Always Sunny in Philadelphia and Testees)! Our friend Eric comes by and we sit here and laugh for a couple of hours, good times! I think I may even have 1-2 beers to celebrate my news of no new growth on my CT (funny how I celebrate status quo). This may sound strange but having the scare of the puffy area around my collarbone sort of made me forget about the worry of the impending pounding I'm going to take and deeper than that, the hope that this pounding is going to result in a cure. It's like I'm an onion of worries, you can peel off one layer but there's another layer of worry underneath...

Such is life of a cancer survivor...

CT Results

So, I had my CT scan yesterday and as you know from my previous post, I was concerned... Well, I just got a call from my P.A. Kerry and he said it looked good! He said there wasn't any new lymphadenopathy and either continued shrinkage or stability of my existing nodes! Whew!! I was really getting worried there as I have this puffiness near my collarbone and continued discomfort in my chest and sides when I inhale. I think it's scar tissue pushing against my nerves and inflammation.

Anyway, I'll get the full report on Friday. Kerry knew I was stressed out and called just to let me know it's ok to relax...

Today I'll be going to the University of Washinton for a "simulation" of my TBI. Can't imagine what that's going to be like... Maybe they want to put me through the motions so I don't have an anxiety attack my first time! I don't know if I have to go in a tube or what the deal is. Once I find out I'll post the information.

One more week to go!!

Counting Down...

Hey everyone, sorry for no update in a while... I really haven't had a whole lot to talk about. I'm sitting here at the SCCA waiting to see my P.A. after a couple of tests (blood, EKG, X-ray). I need to go through this battery of tests again before my next transplant. So I'm doubling for a lab rat today, not that it's a big deal... Next up, my all important CT scan to find out what the first transplant did to my disease. Best case scenario would see shrinkage to all of the enlarged nodes in my chest and abdomen. Wort case, my disease has grown through the transplant and I have enlarged existing nodes and new ones as well. Of course I'm hoping for the former but wouldn't be suprised if the latter is true. I've developed a healthy level of skepticism after all of the disappointments over the last year. Not to mention, I've been noticing a minor swelling in my clavicular area over the last week. It's probably nothing but the last time I had a node check by my doc (where he takes his hands and probes my palpable nodes) he paused in this region above my collarbone then moved on. Of course, I've been pressing and probing non-stop since that visit and have proceeded to freak myself out a bit. I'll find out in a few minutes what the P.A. thinks and hoping it's no big deal (I can't really compare to my other side because I had one of my nodes removed when I was first diagnosed). I hope nobody's alarmed by me writing this (especially you Mom) but felt compelled to document this for reasons none other than trying to relax (it helps when I write about things like this).

So other than my neurosis, everythings cool! I've been doing some Christmas shopping at Costco and online. Trying to navigate the parking lot at Costco is enough to make you go crazy (as if I needed any help). That place in general is pretty much a zoo no matter what time you go. To complicate things, the last time I went, I spent an hour going through and picking up things for myself and gifts. I get to the cashier, they start scanning frantically, putting things in boxes and my total comes up. I hand the gal my Paypal debit card (they don't take charges) and she hands me the keypad back and asks me for my pin #. I scratched my head and told her I didn't know what my pin # was as I just got this card... Meanwhile, I look back and there's 4-5 people behind me with filled shopping carts looking not very happy. "Sir, I can't ring you up unless you have a pin # or cash"... Unbeleivable, I just spent the last hour carefully picking out presents and frozen food while dodging all of the other anxious shoppers. "Ok, ok", I said, do you guys cash checks? "No" she says with a disgusted look on her face. "Ok" I said, "do you know where a bank is around here"? "Yeah, there's a Wells Fargo down 4th". "Ok" I said, "I need to go and cash two checks and I'll be back with cash. Can you hold my stuff". "No problem sir" she said hastilly and off I went to Wells Fargo. So I go in, walk up to the counter and ask them if I could cash these checks (one was actually from the Lymphoma society reimbursing me for gas and parking fees, nice...). The teller then explained to me that I needed to have an account at Wells Fargo to cash checks. Great!! So, of course, I go and sit down with the new account clerk and go through the process of opening a new account. He said, "this will only take a couple of minutes". Yeah right... Around 40 minutes later, I finally walked out of the bank with cash in hand, inching ever so closer to accomplishing my goal for the day. So, I walk into Costco and up to the gal that rang me up. "I'm here to pay for my stuff". She gives me this blank look and proceeds to tell me that they put all of my stuff away. Noooooooo!!!!!!! You've got to be kidding me... "Ok, Ok, I'll just breeze through and grab the stuff I picked out, it's not that big of a deal" I thought to myself. So to make a long story even longer, I went and tried to pick up the stuff I picked out and amazingly, a lot of it was gone! Certain colors of articles of clothing were sold out in the sizes I needed, and certain things gone altogether in a matter of 45 minutes. Amazing... Anyway, that's my rant for today, thanks for reading up to this point. Gotta go up to my check up now.

Adios!!

Out of the Woods!

Well, I got a phone call from Dot today and I'm finally fully engrafted! My neutrophils are 1.4 and my WBC's are almost 4, yeee hawww! So, I don't have to go to the clinic for daily blood work and vitals, just twice a week now (relieved). This means I can get takeout again, go out to a movie or restaurant, go grocery shopping, all without feeling like a "bubble boy"! The only thing I have to deal with now is the chest/side/back pain when I inhale. It's weird as it's really sore intitially when I do my breathing exercises and seems to "stretch out" once I do a couple of deep inhalations and exhalations. I asked the doc about it yesterday and he just shook his head and told me he didn't know what it was and that it "could be anything". I'm hoping it's just scar tissue that is getting stretched out and torn when I breath deeply. The lungs are so sensitive... Anyway, I have a CT scan in around 9-10 days so we'll see. I'll try not to stress out too much till then ;)

Another bit of news, found out my TBI has been moved up to December 18th. So I'll have 4 days of this (2x per day) then get chemo for 2-3 days and probably get my stem cells back on Christmas day! What a Christmas present ;)

My Mom will be coming out on the 18th as well so she'll be jumping right into the fire! By the way, I have to say how proud I am of my Mom for quitting smoking after 45 years! She started using Chantix and is having great results so far. You can do it Mom!!

That's it for now, the waiting begins...

Day 18, still waiting...

I hope everyone enjoyed their Thanksgiving! Jackie and I had a nice non-traditional dinner here at my place (by the way, the pic is of a sunset from my deck a couple of nights ago). I burnt a steak on the BBQ and Jackie had some dry tofu! Oh, well, the side dishes were good and we had some awesome desert. Look forward to next year where we can do the turkey and all the trimmings with family :-P

A quick update on my situation... I'm still waiting for my neutrophils to get to the magic number of .5. Right now I'm at .26 so I'm halfway home I guess. One bit of good news is my LDH level has gone down (thank God!) to 200. So, it looks like Claudia (my P.A.) was right regarding engraftment and elevated LDH levels. I'll look forward to this going down more to normal levels in a few days.

Day 15 Engraftment Begins...

Just a quick update... It's day 15 and it looks like I'm starting to engraft, finally! I'm still neutropenic but at least there are a couple of neutrophils now floating around in my body and hopefully they'll get busy and start dividing like crazy so I can get back out into the world (without being paranoid). All my other counts are starting to come back too which is good. One thing I'm a little worried about is my LDH count. It's at 266 which is higher than normal and sometimes an indicator of cancer activity. I'm researching to see what the relevance is of this pertaining to Hodgkins. My P.A. Claudia said the increased level could be from the engraftment process (LDH "I think" measures cytokines which is a byproduct of cell division). So that seems to make sense as my cells are dividing at a rapid pace as result of the stem cells engrafting. We're going to keep an eye on it and I'll try not to worry.

So, other than feeling tired most of the time, I doing pretty well! The little palpable node that is under my arm is still very small, almost gone (whereas before, it was about the size of a coffee bean). My chest is feeling better, my back is feeling pretty good and I don't have any pain in my posterior rib which has the lytic lesion. I think this transplant is doing the job they want! That said, I found out the plans for my next transplant. Unfortunately, they have me slated to receive my TBI (total body irradiation) for 4 days starting on Christmas Eve! I'm trying to get it moved up at least a week but apparently they're really booked up. So if this doesn't change, I can look at it two ways; I can bitch and moan that I'm going to be spending Christmas Eve and Day getting nuked from head to toe or I can look at it as the greatest Christmas present anyone can get, a chance at a cure! I think I'll choose the latter attitude as there's nothing I can do about it and bitching and moaning isn't going to do me any good anyway... How's that for "staying positive" ;)

Forgot to mention, picked up my frozen holiday meal today! Including the ham and turkey plus potatoes, rolls and canned veggies they threw in a pumpkin pie! The box has to weigh 25-30 lbs. The plan is to freeze it until my Mom gets here and have a holiday party with some friends. Hey, there's another positive about getting TBI over Christmas; I'll have a chance to enjoy a holiday meal without feeling like crap. Life is good!

So, until next time, I hope everyone reading this has a great Thanksgiving!! Oh and by the way, go Lions! (I have no shame...)

Happy Birthday Honey!

I wanted to belatedly post a happy birthday wish to my girl Jackie! We had a nice relaxing evening and made her favorite birthday meal, spaghetti and eggplant :-p. We ate and watched our favorite Sunday shows, Dexter and Entourage. Kinda mellow I know but such is life going through an SCT. Next year will be grand!!

I love you babe and appreciate everything you do for me!