Tuesday, December 30, 2008

Day 4

Just a quick update... Found out that I'll be needing 2 units of red blood cells tomorrow as my Hematocrit is only 25%. Explains why I can't seem to get out of bed in the morning... So, it'll be a busy day at the clinic tomorrow as I go in at 9:30 to be blood typed, then back at 1:30 for the infusion.

I think my Mom, Kenny and Me will be hanging at Jackie's tomorrow for New Years Eve. Our friend Eric burned a couple of new movies that are out right now, Milk and Grand Torino (hope the movie police aren't reading this ;). After that, we plan to either walk or drive down to the Space Needle as they shoot fireworks off the top every New Years. Should be fun...

Happy New Year Everyone!!!

Monday, December 29, 2008

Day 3

Just got back from the clinic... Had to get an infusion of Platelets as my counts are really low (8 thousand for platelets). Feeling a bit better but still pretty wiped out. It's getting tougher and tougher to eat or drink anything. My throat is starting to constrict but I'm hoping it doesn't get so bad that I'll have to start IV nutrition. I'm getting hyrdration supplies delivered tonight so at least I won't have to worry about forcing water down my throat.

We've got some nice sunny weather here right now which is uplifting! It's super windy though and can see white caps when I look down at the Sound from my deck. Thank God the garbage guys are finally coming today! Since we had the snow storm, the garbage men haven't been around and things are starting to pile up (especially with 3 of us here).

Another weird thing I forgot to mention is my skin is on fire! I guess it's a reaction from the Palfermin infusions but it feels like (and looks like) I fell asleep by the pool in Florida. It's especially painful on my back and face (thank God for pain meds). Hoping this goes away in a couple of days or sooner so I can sleep a little better.

That's pretty much it for now, time to go down for a nap once my Mom's done vacuuming here ;) I've got another 10-12 scary days left where my immune system is at zero. Of course, taking it day by day and hoping for smooth sailing...

Saturday, December 27, 2008

Day 1

To continue from yesterday... Got home after yesterday's extravaganza and was pretty zonked. The procedure itself went ok except for the usual barf session 5 bags into it. I was trying so hard to resist, eating and sucking on oranges (per the nurses recommendation). I think I would have been ok if I didn't eat the orange but the prickly sensation plus awful taste of the preservative going into me proved to be too much... I'm sure it was a funny visual with me sitting there in the bed with a big orange slice in my mouth, headphones on, eyes closed trying to meditate through the process! I have to say, my nurse this time around Alyce was awesome. She took her time and didn't rush the stem cells into me like last time. The faster the flow, the worse the prickly feeling and horrible taste. I also have to say my Mom and Kenny were great too! They kept the room light and had the nurses cracking up!

So, from here, I just have to wait it out again till my little stem cells engraft into white blood cells, red blood cells etc... I feel so lucky I can do this outpatient as most people I know have to wait this period out in the hospital. Of course, there's still a good chance I'll have to go in for a period of time if I spike a fever, develop mucositis too painful to manage on my own, not being able to eat, drink, etc... I stayed out the first time so here's to getting lucky again ;)

Just in case anybody's wondering when my next tests are, they usually scan around 100 days post transplant fyi. I'm of course nervous hoping this last batch of chemo and radiation has wiped out the disease for good... I'm nervous and scared that there may still be residual disease. I have a little node that I watch which is under my left armpit. The little guy has almost shrunk down to nothing but unfortunately, I can still feel it... Hodgkins Lymphoma is notorious for leaving scar tissue behind from the lymph nodes it infects. I hope this is the case with this little guy under my arm. Unfortunately, I have to accept and prepare for the worst just in case this is still disease...

Either way, I'm ok with whatever happens and will go on with my life and enjoy it to the fullest!!

Friday, December 26, 2008

Birthday 2!!

So, real quick, here at the SCCA waiting for my stem cells to arrive (12:00). I'm here in the room with my Mom and Cuz Kenny. This is an epic day for a couple of reasons; First, the stem cells will allow me to live after the boat load of chemo and radiation they've given me over the last week (my bone marrow has been completely destroyed). Second, it's the first day I can start planning my post cancer life which I can't wait for! I'm planning an epic roadtrip around the country... First, I'm going to drive from Seattle down the coast to L.A. to visit my buddies Lee and Mike. From there, I plan to head East with possible stops in Vegas to visit my buddy Brian. I'll continue through hitting national parks in New Mexico and Texas with a pit stop planned in Austin, possibly with Brian or Mike in tow. Once I've seen Austin, I'll then continue East with final destination of South Florida to visit my buddies Ramil, Dan and Mike. I'll chill out there for a while, hopefully go fishing. From there, heading north to Michigan to see the family for a few weeks.

This of course is still in the planning stages and of course I can't go anywhere until I engraft and get my energy back. I think it's good though to look forward and make plans. I'll elaborate more on this later... Also, I'll update on how the stem cell re-infusion goes (hopefully better than last time.

Thursday, December 25, 2008

Merry Christmas!!!


Hey Everyone, here at home enjoying a mellow Christmas with my Mom and Cousin Ken (see photo, Santa was icognito in Seattle). Feeling ok after Cytoxan yesterday, Thank God! Started the day off by going to the clinic for usual blood and vital checks. From there, we went and had a non-traditional (being Polish and everything) Greek lunch of Gyro sandwiches and Sage tea at this great little Greek spot in Capital Hill. After that, I took them to St. James where we said a prayer and lit a candle. My Mom and Ken were amazed at the beauty of the Church...

I already miss my girl Jackie! She left this morning to go home to see her family in Michigan. I know she's exhausted after going to sleep at 1 last night and getting up at 4 to meet the cabbie this morning. To complicate things, she had to walk up the hill to meet the driver as he was afraid of coming down thinking he'd get stuck. Thankfully, the weather is getting mild again here and everything's starting to melt. It's going to be a mess for the next few days but at least I'll be able to get back and forth to the clinic without worrying.

So, I hope you all had an awesome holiday! I miss all of my family and friends and look forward to seeing/talking to you soon.

Cheers! Chris

Wednesday, December 24, 2008

CYTOXAN!

Well, just laying in the bed again here at the SCCA... Just got done with my Cytoxan infusion. Pretty uneventful thankfully, now I just have to sit here for another 6-7 hours while they hydrate me after I get my Mesna infusion (to prevent kidney/bladder damage).

I have to say, I haven't been this run down in a looonnnggg time but I'm ok with it. I just have to be diligent later on tonight taking my anti nausea drugs as it creeps up on you 7 hours after the infusion.

I really hope this is the knockout punch to my nemesis Hodgkins! I've been fighting this bastard for over a year now and nothing has seemed to work. 4 days of total body irradiation, 8400mg of VP-16 and now Cytoxan (not to mention all the other treatments over the last year), one would hope this does the trick. If it does, I'll consider myself the most blessed and lucky guy on the planet! If it doesn't, I'll just have to tip my cap to the Hodge and say I gave it my best shot...

Here's to it working!!!

Tuesday, December 23, 2008

VP-16 Hangover...


Actually, I don't feel all that bad today, thank God! This morning I even had some rare energy which quickly faded after my clinic appts. So far though, no real problems with nausea or mucositis (knock on wood). My biggest thing right now is trying to eat. Because of the Palfermin, I have absolutely zero saliva in my mouth and everything tastes like cardboard. The only foods I can eat have to be moist or liquidy. I tried to eat some crackers last night and it was a joke! My Mom just got back from the grocery though and went hog wild! She bought me all kinds of soups, noodle dishes, treats, you name it...

So, we're getting into the Christmas spirit at my place tonight. I've got icicle lights all along my ceiling and also bought a little Norfolk Pine tree from the Home Depot which I've also strung with lights and some ornaments. Plus, as I've well documented, we've got pleny of snow so it should be a white Christmas :)

Tomorrow's going to be a long day as I've got my final high dose chemo Cytoxan. I've got to be at the clinic at 8 a.m. and will be there till around 8 at night. They have to give me 2 hours of hydration prior to my chemo, then they have to infuse me with a drug called Mesna which protects my kidneys (from the Cytoxan) then the actual Cytoxan itself. I think they saved the nastiest stuff for last... Hopefully I'll be feeling ok to celebrate Christmas eve. My cousin Ken is supposed to be coming in from Chicago (weather permitting) so that should be nice.

So, if I don't update, I hope you all have a wonderful Christmas with many blessings!

Monday, December 22, 2008

VP-16


Well, I'm here at he SCCA in a bed and receiving my first high dose chemo. Thank God they finally got WiFi here! This place had every ammenity of a "boutique" cancer center (tasteful updated decor, artwork, gourmet food), but no WiFi till now, go figure...

The chemo I'll be getting today (VP-16) is of course pretty nasty stuff. My infusion nurse Seth told me that most people with solid tumors receive 200mg. Guess how much they're going to give me today...? 8500mg!!!! Holy shit! Now I know why they call it high dose chemo, they're giving me an elephants dose, crazy... I mentioned this stuff is nasty, don't know if that's the proper word for it. First of all, at this dose, they can't put it in a bag because it'll eat right through the bag. They have to give it in a special plastic syringe (5 of them) that get automatically pushed by a machine. I could taste it as soon as Seth hit the button to start the pump. That brings me to the next interesting part of this chemo. They have to mix it with pure alcohol for some reason (he explained it to me but I forgot). So, as I get infused with this chemo it'll be like doing 5 shots of pure alcohol over 4 hours! Might as well belly up to the bar! I got that saying from an old co-worker from Texas and finally got a chance to use it :) So I better get this entry in before I start feeling looped which I'm sure I will be after the dose of benadryl and zofran they just gave me... I'll be doing my best to hold it together (no barfing).

A quick update on the crazy weather we've been getting here; My Mom and Jackie had to push me out this morning even though I parked on top of the hill! Times like these I wish I had a Hummer... I'm a little worried how we're going to get back and forth to my place. I guess we'll deal with it when the time comes. Worse comes to worse we can just crash at Jackie's place although I don't think my Mom's too keen on the idea of sleeping on the couch again. Who knows, maybe they'll plow the street that leads to my place but I doubt it.

P.S. I decided to put one of my painting's up for S&G's :-)

That's pretty much it for now. Just going to listen to some music and drift off........

It's 3:15 and wanted everyone to know we made it home safely, thank God. I'm feeling pretty out of it so I think I'll just hit the rack and pretty much stay there till tomorrow's appts. At least I get a 24 hour break before the next monster CYTOXAN huuuhhhhuuuuuhhhhuuuuu (menacing laugh).

Cheers Everyone!

Saturday, December 20, 2008

TBI Day 3

3 days down, one to go! Went through both sessions of TBI today without any problems... I started using the custom designed lung blocks for my afternoon session which were made of lead and around 3 inches thick. They kind of looked like slices of cantaloupe... The blocks were taped onto a piece of plexiglass and attached to the "rack" which holds me steady while they zap me. To make sure they were lined up properly, an x-ray was taken prior to the session. The tech then came in and made a mark on my chest with a sharpie to make sure I was properly alligned. All of this seems pretty low tech if you ask me... I mean the blocks were taped to the plexiglass with masking tape and he positioned me by using a sharpee! I did my best to hold as still as possible for the 12 minutes I was in there but sure I moved a little bit. Apparently, the idea is to protect (the best they can) the portion of my lungs that has the highest capacity (mid to lower portion). I guess I'll find out how the blocks worked once I recover from this mess and go biking or running for the first time...!

My other excitement for the day came from yet more snow here in Seattle. I dropped my Mom off at my place after my appts. so I could head back to Jackie's (wanted to be close to U of W as we're supposed to get hit again tonight). It took me at least25 tries to get out of my little subdivision! I would get halfway up the hill and that was it... I finally got enough momentum to get up the hill and made it over to Jack's safely. On the way, I checked the auto parts stores to see if they had any tire chains and all of them were sold out. I then went to a tire store and could've grabbed a set but the guy was totally capitalizing on the weather situation and selling sets that normally retail for $39 for $100!! People were still lined up to buy them, capitalism is alive and well here in Seattle...

I also wanted to mention that I've found an energy healer who's been helping me. My buddy Lee down in L.A. has been fighting an extremely aggressive brain tumor (Glioblastoma). He'd been through surgery, chemo, radiation and not too long ago had an MRI that showed his tumor was growing still. He then switched to an experimental drug called Avistan. The drug has some pretty bad side effects so he decided to stop the drug and go a different route. In came Ron. Ron is an energy healer who promotes the power of natural healing. I'll comment more later regarding some of Ron's techniques and methods. Back to Lee... He's gone to 3-4 sessions with Ron and told me he hasn't felt this good since before he was diagnosed. He has more energy and has been working and living a pretty normal life. The best news is he just had an MRI and found out his tumor is shrinking!! To me this is incredible as he stopped taking the Avistan (tumor shrinking drug). Can't say how happy I was to hear this for Lee!

In no way do I plan on stopping my treatments... I want the chemo and radiation to kill all of the cancer cells in my body. Where I think Ron can help me (and he agrees) is how he can help my body (and mind) heal so the disease doesn't come back. I think that's one thing that's lacking in the cancer field today is assisting patients in their healing post treatment. I'm excited to find out ways that I can participate in this healing through future conversations and eventual face to face meetings with my new energy healer!

The more tools I can put in my box the better...

Friday, December 19, 2008

TBI Day 2

What a difference a day makes! I'm feeling much better, thank God! The swelling in my face and neck has gone down and my headache is way better. I talked with the nurse today and she said it's common when people first start TBI to get severe headaches as the brain swells from the radiation. I really didn't think I was going to be able to go through with it until this morning. I don't think I'll have a problem finishing my last 4 sessions now... I've been told to expect severe fatigue and maybe some more nausea, nothing I can't handle.

Nice to be back at my place... The roads over here in West Seattle are still pretty slippery but I'm getting better at knowing which hills I can take and which ones to avoid. It's all about momentum... If I can get a little head of steam before I get to a snowy hill, usually I can make it up. If there's a car ahead of me going slow or if I have to stop and re-start for any reason, forget about it. I probably should look into getting some chains for my tires as it seems like most people have them but hoping the weather gets better and I won't have to worry about it anymore. I guess we're supposed to get some more snow this weekend so hopefully I can get my last 4 TBI sessions in.

By the way, it's pretty funny watching the cyclist's riding around in the snow! There's so many people here who use their bike as their primary transportation... For a lot of them, the snow hasn't slowed them down! That's some serious dedication...

That's all for now. I'm totally exhausted and will be crashing early tonight.

Thursday, December 18, 2008

First Day of TBI...

Did anyone catch the license plate on that truck...? Wow, can't believe it's only day one and I feel this lousy. I'm really hoping tomorrow is better because I don't know how I'm going to do 3 more days of this... My head feels like it's going to explode and I'm really nautious (although I just took a compazine and attivan and feeling a little better). The combination of Palfermin and TBI has caused my cheeks and jaw to blow up like a balloon. Thank God I have a girlfriend! (thanks for making me feel better babe)

The actual process of radiation isn't really that bad though. In fact, I'm only in there for 12 minutes (two 3 minute sessions facing front and 2 facing back). For the afternoon session while facing front, I closed my eyes and played 9 holes at one of my favorite golf courses in Michigan, The Orchards (front 9). I was afraid I was going to puke so I needed to keep my mind occupied. I was 7 under making the turn...:-) When my back was to the machine, I got to look at a Where's Waldo poster to pass the time. Amazing all the detail that guy puts into those drawings! I finally found Waldo after about two minutes into my morning session so I got bored of that pretty quick. Hoping they change it tomorrow...

Picked up my Mom at the airport tonight which is nice. I feel bad for her as her flight was delayed for an hour and they were stuck on the tarmack when she arrived in Seattle for at least an hour. It took another hour or more for her luggage to arrive, crazy... We've been hit here in Seattle with some serious winter weather (reminds me of home) that's wreaking havoc on commuters. It's really hilly here and I've gotten stuck a few times now trying to drive up hills (and I've got all wheel drive). When it happens, I've got to carefully cut my wheel, let the car roll back, put it in drive and let the front slide around 180 degrees so I can go back down. I couldn't go back to my place tonight because my apartment is at the bottom of a hill. Getting down is no problem, coming back up is another story. Don't want to risk it with my first appointment at 7 a.m. So, Mom gets to sleep on Jackie's couch tonight to add to the drama... I don't think it's a big deal as I think she'll sleep like a baby after a full day of travelling from Michigan.

That's pretty much it for now. The fun is just beginning...

Tuesday, December 16, 2008

Jowels!





Hey Everyone,

Counting down till D-Day on Thursday! I took these pics at my favorite park in West Seattle, Lincoln Park. I try and stop there when it's nice to get some exercise on my way home from the clinic. It's been especially nice there as we got some rare snow here a couple of days ago and there's a white blanket over everything... It's also been pretty cold here (25-30) and think I may have gotten a wind burn from walking along the beach. I look pretty funny these days having a shiny bald head, red face and puffy cheeks! The puffy cheeks part is from the Palfermin infusions I've been receiving. It's really working as the inside of my mouth feels really thick and weird. I went to Taco Bell for lunch earlier and the food tastes different... I think my taste buds are buried in new tongue flesh, bizarre...! I think it's going to be worse tomorrow as I have another infusion of this stuff. So for the next few days, I'm going to look like a big bald red chipmunk :-D.

Small price to pay (gladly) for reduced mucositis...

Saturday, December 13, 2008

Slumdog Millionaire


Jackie and I went out to the movies last night (first time in a while). We saw this great flick called Slumdog Millionaire at this great old theatre in the Capital Hill neighborhood of Seattle. If it's playing where you live (I think it's a limited release movie) I highly recommend it.

Also, wanted to congratulate my friends Roger and Mandy on the birth of their new Baby Joshua! He came into the world a little early (3 weeks) and weighs in at 5 pounds 9 ounces. Can't wait to meet the little bugger! :-) I hope Mom Mandy is feeling better and home soon...

We're sitting here watching one of our favorite movies, Pulp Fiction while also watching a rare beautiful snowfall here up on top of Queen Anne Hill (Jackie's place). Also had a fun day Christmas shopping downtown today. There was so much great energy and Christmas spirit with Christmas Caroler's singing and the usual street performers. The Christmas lights were beautiful with the topper being a giant star above Nordstroms. I think we may go back tomorrow so I can take some shots to send out...

So, it's been a nice last weekend so far before my big transplant starting next Thursday. On Monday I have to go in for the first infusion (of three) of this new drug called Palafermin (sp?). It's a growth factor drug that helps mitigate mucositis. The drug works by stimulating extra growth of the skin inside my mouth. In other words, once I get the drug, my tongue, cheeks and gums will grow extra thick so that when the mucositis kicks in, I'll have a cushion so to speak. Kinda like having padding inside my mouth. I guess the sensation is pretty strange once it starts working as you can imagine having an oversized tongue and puffy cheeks and gums! I'm also starting to prepare mentally for the pummeling I'm going to take. The first step is going to church tomorrow to pray! There's a beautiful church also in Capital Hill called St. James Cathedral that Jackie and I like to go to. It's probably one of the most beautiful churches I've ever seen with amazing stained glass etc... and a beautiful choir.

After church I hope to watch the first win by my hapless Lions... You never know, miracles can happen (although I'm not betting on it)!

Thursday, December 11, 2008

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!!

Tuesday, December 9, 2008

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!!

Wednesday, December 3, 2008

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...

Friday, November 28, 2008

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.

Tuesday, November 25, 2008

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...)

Sunday, November 23, 2008

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!

Thursday, November 20, 2008

See Ya Dad! Day 10


So, just arrived at the clinic after dropping my Dad off at the airport. I think he's leaving at the right time as it seems like the rainy season is finally arriving here (although it's supposed to be nice this weekend ;). It was nice having him here for support and comfort. Also nice to have someone to watch all of my sports with! It ran the gamet of Michigan sports with the Wolverines (sucked), Lions (sucked), Pistons (awesome) and Wings (awesome)! We also had a chance to do some BBQing and of course wrestling with my crazy dog chili. I'll miss you Dad!

As for me, I'm here at the clinic waiting for some platelets to arrive as I need an infusion (my platelets are 11 yikes!). I'm also on the borderline for red blood cells but I think I'm going to wait on them as my Hematocrit has been trending up. We'll see how it looks tomorrow and go from there. Otherwise, everything is going well I think. So far, no fevers (knock on wood) and very little nausea and G.I. problems. Well, I guess I have been having some G.I. problems but just pretend they're from eating White Castles (man, I miss that out here!). Reminds me of Harold and Kumar... if you haven't rented it, it's pretty funny (silly funny). And I digress....

So for now it's life back to normal (relatively speaking) until my next transplant (barring any catastrophe's). My Mom is due to arrive on Dec 6th and will be staying through the holidays (bless her heart!). Speaking of holidays, I received a phone call the other day from volunteer services here at SCCA letting me know that I was selected to receive a free Thanksgiving dinner! I just have to come pick it up next Tuesday (it'll be frozen). They told me they have a turkey, ham, veggies, potatoes and possibly desert in there with other odds and ends! I think we'll wait to prepare it however as it'll be just Jackie and I next Thursday and she's a vegetarian. Can't see myself eating a whole turkey and ham by myself ;).

That's pretty much it for now. I'll probably update this weekend. Hopefully I won't be neutropenic by then. Jackie's birthday is this Sunday and I'd love to take her out to dinner... We'll see-

Monday, November 17, 2008

Day 7, slow moving...

Well, just a quick update, it's day 7 and I am now officially neutropenic. That is, my white blood cells and neutrophils are at zero. What this means; I have absolutely no immune system whatsoever and totally susceptable to any germs, bugs, viruses, etc. So far, I'm bucking the trend according to Dr. Press who says that 19 out of 20 patients land in the hospital with a fever at some point during this protocol. I really hope I'm the one person out of the 20 (I really don't want to go this time) but realize it's still a strong possibility.

As for everything else, I'm just taking it easy obviously... My Dad is still here and we both enjoyed some awesome Chili (not my dog) Jackie made yesterday! She actually got the recipe from Barack Obama online (hope her Dad doesn't find out ;). It had the perfect amount of fire, two kinds of beans (kidney and black) fresh green peppers, onions, garlic, yada yada yada... I had my second bowl for lunch today, ohhh yeaahhh! Hopefully this batch will give me some energy as I'm really dragging ass right now...

More news to come as it happens...

Thursday, November 13, 2008

Living a Dog's life (Somewhat)


Well, it's day 3 and so far so good... I don't know who's lazier me or my dog Chili! Luckily I haven't had any major issues or drama yet unless you count the tongue lashing I got from my nurse for not showing up at the clinic on day 1! That's right, I blew off my first clinic on Tuesday as I was still exhausted from such a long semi-traumatic day on Monday. I showed up yesterday at clinic and my nurse named Dot (no joke) made me call in my Dad and Stepmom to the office. She then proceeded to tear me a new one not to my face but to theirs. It didn't stop there however... My P.A. came in next and was a little softer but had the same message, "you need to be here every day for us to check you out". Ok, Ok I said, I understand. Next was my transplant doc who started to go into it and I finally said enough is enough already! I UNDERSTAND! So we finished the session and they sent me down to get x-rayed as I've been having some pain on my left side when I inhale. Got the results back today and my P.A. Claudia said it looks good except the lytic lesion I have on my rib is still there although there's no way of knowing it's still active with canser. By the way, I mis-spelled canser on purpose and will continue to do so. There's a gal named Kris Carr who is a survivor and started a web site, filmed a documentary and wrote 2 books who gave me the idea. Her site is Crazy Sexy Cancer and she said intentionally mis-spelling canser kind of takes the stigma out of it. I like it so I think I'll do the same. Kinda cool there's another survivor out there who shares my name (although she spells hers with a K). I actually discovered her when I first got diagnosed and Jackie and I were flipping channels. Her documentary happened to be on Discovery Channel and the timing couldn't have been better.

Anyway, other than going to the clinic everyday, I've been laying low like I said. I'm still painting and putting the finishing touches on another piece of work. I say a piece of work because my hobby is a work in progress :) I am getting a little better though (I think) and one day might have the guts to put a pic of one here.

Also, my Dad will be dropping off my Stepmom Marty tonight at the airport. I really appreciated her coming here and taking time off of work to help out. My Dad will be staying with me until the 20th I think. I'm hoping that I'll be able to stay out of the hospital until my next transplant. The nurse told me that my counts are going to plummit any day here and I'll be vulnerable to infection. I just need to keep taking my temperature and make sure I'm hydrated. There's a chance I'll get through this one without having to be hospitalized but it's a slim chance... For my next transplant however, I will for sure have to be hospitalized as my doc says he's never seen anyone go through the protocol (2 HDC's and TBI) and not have to spend time in the hospital. I guess the average is 14 days. By the way HDC=high dose chemo and TBI is total body irradiation. I'll cross that bridge when I get to it...

By the way, I just wanted to ask anyone who prays to keep my friend Marsha in your prayers. She just found out yesterday her SCT didn't work. She has been fighting relentlessly and really suffered along the way. My heart goes out to her and her family. Her next move is GND chemo and then possibly a trial drug or mini allo transplant. I wish her the best...

Monday, November 10, 2008

Day Zero 1st "Re Birthday"


So, I just got home after a long day at the SCCA... "You say it's your birthday, du du du du du dudu"! Well, it didn't feel like a birthday but I'm glad I'm here at home alive and well.

My day started off with the usual blood draw, no problem. I then went up to infusion where I would receive more hydration (mind you, I had been doing IV hydration the last 24hrs. at home with a pump). By now, I was ready to burst... After this, the nurse came in and gave me an elephants dose of benadryl and the room started to spin and I couldn't lift my head off the pillow, crazy... Combine that with Attivan and Zofran and I was a certified zombie. Oh, by the way, I agreed for some reason to take part in this trial their doing with Zofran to see if patients administered the drug had reduced nausea and vomiting while getting infused with stem cells. Later, I would be kicking myself as the guy who was running the study kept asking me after each bag of stem cells how nauseous I was... I was doing fine on the first bag even though it felt like (and tasted like) I was swallowing little pins and needles. To quell this, (I thought) I would drink chocolate milk to coat my throat and minimize the "uncomfortable" feeling in my esophogus (this would later come back to haunt me). Not to mention, my head and shoulders we're blazing on fire for which the nice nurse gave me a cool washcloth to put on my head. After the third bag, the trial guy asked me how nauseous I was and I threw a number out of 4 and asked him "why are you asking me this?" and he reminded me I volunteered for the study... Damn, I forgot! So the fourth bag starts dripping and he asks me and I throw out a 2 (between 1-10) and shortly thereafter, I was hurling chocolate milk, grape juice (and the rag that was on my head) into a bucket for all 7 people who were in the room with me to see! Everyone played it off though like it was no big deal which was good... After that, I started to feel a little better and got through the last two bags. Thank God that's over, now I get to do it one more time in around 4 weeks, yeehawww!

From here, I just have to wait for the stem cells to "engraft" so my immune system can bounce back in around 10-14 days.

And the fun is just beginning...

Sunday, November 9, 2008

Melphalan

Well I received my first high dose chemo today and thankfully it was drama free. In fact, the hydration (so far) has been the worst part. I had to get up at 6:00 a.m. this morning and hook myself up to 1000ml of sodium chloride mixed with a little potassium. I ran this (a little pump in a bag) until I arrived at the clinic at 10:30 where I was given Zofran, some more saline then my chemo. I'll have to be hooked up to this pump until tomorrow morning so the Melphalan is completely flushed out of my system. It has to be out of my system for the stem cells to survive when I get them back tomorrow.

The crazy thing is my high dose chemo infusion took less than an hour to administer. Hard to believe this short amount of time being given chemo can do so much damage to my immune system. This 60 minutes of infusion is going to completely wipe out my bone marrow, and most of the other rapidly dividing cells in my body. The only thing that will save me now is stored in a freezer at the SCCA! That said, I'm praying the Melphalan kicks the crap out of the Hodgkins cells that are still lurking in my body. I will go to bed tonight visualizing the tumors in my body shrinking and dying off.

Luckily (for now) I don't feel too bad... Just had a couple slices of pizza and they're staying down with no problem. In fact, so far the only thing I feel is a little fatigue. I know this will change over the next few days though. I'll try and update tomorrow when I get my cells back.

Thursday, November 6, 2008

Costco

I never thought I'd say this but Costco is awesome! I went today and loaded up on SCT supplies (Hepa air filter, frozen dinners, protein powder, juice, etc..). Man, it's easy to drop a boat load of money in that place as there's so many deals! Unfortunately, I have to watch every penny these days living on long term disability checks...

I also found this great art supply warehouse not to far from Costco and loaded up on canvases and bought a new 10 tube acrylic paint set. In fact, I just got done with a painting here at Jackies. It's sort of an abstract looking sun with a black background. I've found painting to be one of the most relaxing soothing things I've ever done. Some of my pieces turn out ok and some look like third grade work! With that said, I'm really enjoying it and find it therapeutic as it helps me keep my mind off of cancer (which of course is a good thing). One of my Hodgkins buddies, Duane from the Bronx (www.thejournalofaprizefighter.com) started a thread on our Hodgkins forum talking about hobbies/interests that people have picked up as result of having cancer. He happened to pick up photography and has some really cool shots you can check out on his blog. The guy is a big time warrior as he's gone through an auto transplant like the one I'm getting ready for as well as an allo transplant where he's received a donor's stem cells. The allo is much tougher as many people develop a condition called graft versus host disease where the donor cells start attacking not only the cancer cells in your body but your good cells as well. This can be controlled but the side effects are pretty tough to say the least and a lot of times can be fatal if they get out of control. Duane definately has my respect.

By the way, I was glad to read that my other Hodgkins buddy Bekah is doing much better with the experimental drug she's on to control her refractory hodgkins. She just had a PET scan and after two cycles, the drug has reduced her disease drastically and her side effects are much milder now as they've adjusted her dosage.

There are so many others on the Hodgkins board who have or are inspiring me to get through these next few months. Not only has the board been great for support, I have to say I've learned most of what I know about my disease from it. I've actually suprised (and probably irritated) my doctors more than once with some of the questions I've asked them based on what I've learned from others on the board.

I received good advice from a former co-worker who told me never forget "who's driving the bus" when it comes to getting treated for cancer... yes, that would be me! Although I have to say I feel like I'm driving on a snowy slippery Michigan road in the dead of winter right now. Have to hang on tight to the steering wheel and hope I don't hit a patch of ice... Soon enough though, I'll be hitting dry smooth pavement and be in control once again :)

Monday, November 3, 2008

Insurace Approval!


Met with Dr. Holmberg today and she let me know Aetna is going to approve the Tandem transplant! Cross this off my worry list... Also found out the cancer isn't in my bone marrow which is good.

So, I'm due to get my first transplant a week from today. I get my chemo this Sunday, come home, hook up to a hydration pump for 24 hours then go to the clinic the next day to get 1/3 of my stem cells back so I can recover. The only worry right now is making sure the Melphalan (first chemo) works. If my cancer happens to progress through the first transplant, I'll get kicked off the trial, not good... That said, I feel confident and hopeful that this first transplant will do what it's supposed to do, kill Hodgkins cells! Like I told Dr. Holmberg, each treatment is getting me closer to remission. It's just taking me longer than most to get there!

The rest of the week I'll be busy getting ready for the transplant. Gonna go to Costco and load up on frozen meals (don't have to worry about food bacteria). Also have to do a deep clean on my place anti-bacterializing (is that a real word?) everything. I'm also looking to get a hepa filter to kill any airborn germs. Kinda scary going into this knowing it's the beginning of flu season, yikes! I just need to be super careful to avoid any situation that will expose me to germs or viruses. Like I said before, I'm just going to turn into a hermit and stay home as much as possible. This is actually the rationalle of SCCA doing transplants on an outpatient basis. My doc says hospitals are where you're going to find the most exotic germs and viruses. So, hopefully I won't get sick and can avoid the hospital. I still will have to go to the clinic everyday for bloodwork and most likely blood transfusions. Realistically however, I know there's a good chance I'll have to be hospitalized at some point for infection (most likely my second transplant) but will worry about that if and when it happens.

I just want to finish by saying how thankful I am that I have this opportunity to fight for a cure. I'm thankful for my former employer Barnes for offering quality health insurance like Aetna. I'm also thankful that I live in America and have a chance to be treated with modern medicine. I'm thankful that I have such a loving and caring girlfriend who has been such a rock for me through these extremely difficult times. I'm thankful that I have such supportive and loving friends and family.

I can't wait to "pay it back" by getting better and God willing being cured...

Friday, October 24, 2008

Full Steam Ahead!!


Met with Dr. Holmberg today and got some good news! The GVD has further shrunk my cancer to the point where I now only have "mild residual disease". It's not perfect (remission would be ideal) but it's good enough for me to enter into the tandem auto stem cell transplant trial which offers me roughly a 20% additional chance of a cure. Like I've said all along, anything that helps me toward a cure I'm all for...

So, from here, I can relax for a couple of weeks (now that I have my bone marrow biopsy out of the way). My Dad and my Stepmom are coming out the 31st for a long weekend visit where I'm going to belatedly help him celebrate his 60th birthday, yee haw! If the weather is nice, we're going to attempt to play this beautiful golf course, Chambers Bay which is right on Puget Sound and future host to PGA tour events. Who knows, maybe we'll even go out for Halloween!

After that, it's down and dirty again with the first transplant starting 1st week of November. It's scary as SCT regimen's carry a 6-8% mortality rate. I have to be really careful of infections (germs, viruses, etc...) as my immune system is going to be totally wiped out TWICE. This means obsessive hand washing, careful food preparation (most likely lots of microwave dinners), avoiding crowds, etc... Basically, I'm going to be a hermit for the next few months. Good thing I just signed up with Direct TV and have all the movie channels. I also think I'm going to get the NBA pass so I can keep up with my Pistons. I've recently taken up painting so that should keep me busy too. I just need to get through this without getting any infections because if I do, it means isolation in the hospital. The SCCA is one of the few institutions that do SCT's outpatient and if possible, I'd like to keep it that way as I can't stand hospitals.

Anyway, I'm sure I'll have more thoughts on this later, I'm just thankful and grateful that I have a chance to do the tandem transplant. Thank you God!

Sunday, October 19, 2008

Next Steps...

Well, Jackie and I met with my transplant Doctor on Friday (Dr. Holmberg) and she laid out a roadmap (rough) for the upcoming weeks. I have to say, she seems to be a great doctor, probably the best I've had so far so that's good!

I have a myriad of tests the next couple of weeks some of which I've already completed like EKG, dental, physical, etc... This Wednesday is a big one and that is my restaging PET scan. This is going to determine whether I enter into the SWOG study for a tandem Auto Transplant. She said that if my disease has shrunk >50% then we can proceed with the tandem (pending insurance approval). If I still have more than 50% of disease prior to me starting GVD chemo, were just going to do the one transplant. She's worried that if I still have greater than 50% residual disease there's a chance my cancer could grow through the first transplant as it's a reduced intensity transplant with one conditioning regimen. In other words, if the cancer grows throught the first transplant, they have to pull me from the second transplant. This wouldn't be good because the second transplant is the one that really packs a punch and offers the chance of a cure. So to sum up, a perfect scenario would see me in remission after the PET (or >50% reduction), a tandem transplant would be scheduled where they would first give me single dose Melphalan chemo and then 1/3 of my stem cells back. I would then recover for 4-8 weeks then get my second transplant which would consist of conditioning chemo Cytoxan and VP-16 with 5 days of total body irradiation 2x per day. I would then get the rest of my stem cells back and recover for 6-10 weeks.

After the PET scan on Wednesday, I have a bone marrow biopsy scheduled for Friday morning. For this procedure, they take a 6" needle and penetrate both of my hips extracting bone marrow to be analyzed to see if the cancer has spread to my marrow (not fun). This will be the third time I've had to get one of these! So far, the first two times the test has been negative thank God.

So, I'm hoping for a good week of tests and looking to start some type of SCT first of November. I feel like I'm getting ready to deploy to Iraq or Afghanistan, pretty crazy...

With all of this said, I feel fairly relaxed and think I'm ready. The good thing is that no matter what, after all of this, I'm done with chemo! Like I said before, I have a good feeling things are going to work out :) In a way, they already have...

Wednesday, October 15, 2008

Last GVD!


Well, here I am again in front of the laptop... Just watching the recap of the debates after watching most of the actual debate at the clinic while receiving chemo. Hard to believe the election is in 3 weeks! I'm completely stuffed as I've been trying to gain some weight after my almost 2 weeks without eating. I stepped onto the scale today and noticed I've lost about 10-12 pounds... Kinda scary. I get so full now so easily as I think my stomach has shrunk. I need to gain this weight back because I know I'm going to be in the same situation (not being able to eat) once I enter SCT. Easier said than done dealing with nausea and residual mouth sores. Just another hurdle on my journey...

I wanted to share something good that happened to me that could have been pretty bad. I was on my way to the Comcast office to drop off my old cable box as I've recently switched to Direct TV. Here in Seattle there are some serious steep hills in certain neighborhoods and Jackie happens to live on top of one of them (Queen Anne). So, I had to progress down the hill to get to the main route. Having chemo brain, I forgot to bring my wallet with me and also failed to fasten my seatbelt (dumb move I know). I was halfway down the hill and because of the steepness of the hill (that's my excuse and I'm sticking to it) I failed to come to a complete stop at a stop sign. Of course, a police officer was parked right at the cross street! We made eye contact, she told me to roll down my window and told me to pull over so "we could talk". She walked over and asked for my license and I told her I didn't have it. She then asked me why I didn't have my license and I told her I was in treatment and had chemo brain. She then went into a tirade about how she doesn't feel safe with me driving, how I should find a driver and basically stay off the road! She then went to her car after I produced an expired proof of insurance and expired drivers license which I had in my glove box. Yikes! I waited and waited as 10 minutes went by... She then came to the car and asked me for my social security # as she had a Chris Carr in the system that was a wanted fugitive felon!! Things are going very wrong... I gave it to her and sat in my car for another 15 minutes now very nervous and very scared that she was going to mistake my identity and "throw the book at me". I envisioned her cuffing and stuffing me and bringing me down to the station for instense questioning... Mind you, I had my final infusion in just another half an hour. She finally came back with what looked like a ticket and I braced myself. She then went on to say (to my delight) that she undertood I had enough on my plate and was just going to issue me a warning! She then went on to tell me she has two colleagues that are currently going through stem cell transplant and she knows what I'm going through. We went on to have a great conversation about some of her other friends who have made it through bleak circumstances and we had a real spiritual connection. We ended up exchanging contact information and can truly say I made a friend! I couldn't believe it and was overwhelmed by emotion as I drove off... I think I have a Guardian Angel looking after me and thank God for it!

So where do I go from here? First, I'm going to make sure and always have my license and seat belt fastened while driving... :-D Seriously, I meet with my transplant team tomorrow for my prelim physical. I hopefully will find out when my re-staging PET scan is and an outline for subsequent treatment, i.e. SCT.

So long GVD! I've now conquered You, ABVD and ICE. I'm a little wounded but still very strong in mind and body and ready for the next phase in my quest for a cure!

P.S. Just wanted to send good vibes to my friend Bekah who is having a hard time with side effects on an experimental drug http://truebeautyneverhurries.blogspot.com/. Also, wanted to send prayers to a guy named Mike in St. Clair Shores who has been battling Hodgkins for a while and is in constant excruciating pain that no pain med has been able to offer relief. The only thing that will work for him is a epidural but the doc's are afraid to do so as he is so immunosuppressed and they're afraid of infection. I truly hope they can find a way for him to get this so he can be in peace.

More to come...

Sunday, October 12, 2008

One Day At a Time!


Well, it's Sunday evening and Jackie and I are sitting here in her living room mindlessly fidgeting with our laptops... Chili is over in the corner snoozing... All seems to be pretty normal.

It is possible to forget about cancer for a while, although those moments unfortunately don't seem to last very long. I am increasingly getting more and more anxious about my impending stem cell transplant and need to figure out a way to keep calm about it. I've done tons of research on the web and through my forums regarding personal experiences and think I have a pretty good handle on what to expect. No matter how I slice it, it's going to be tough. I'm just now getting a little taste of what it's going to be like with the bout with Mucositis, rash, etc... In fact, the only thing that I haven't experienced is the extreme naseau and vomiting. I guess I haven't experienced it from chemo but have been extremely sea sick before and guess it couldn't be much different from that right?

I think the hardest part about all of this is the possibility of this (SCT) not working. Don't get me wrong, I am confident and truly think I have a great shot at this working but it is natural and normal for the tiny seeds of doubt to creep in every once and a while. What a waste to have to go through all of this crap and have it not work right?! That's why I'm thinking there has to be a reason why I'm going through all this (side effects now and upcoming) and that reason is a CURE!

I'm so excited to think about life post cancer... I know it's going to be a long road to recovery (I've read anywhere from 6 months to 3 years!) but it's going to be totally worth it.

Until then, I'm just doing my best to enjoy all the simple pleasures in life when I can. Simple things right now like being able to chew and swallow food, brush my teeth, talk and walk make me very happy! My message (to myself) here is to be conscious and mindful of everyting I do and try and appreciate it the best I can!

Happy Monday Everyone!

Wednesday, October 8, 2008

GND Back On!



Well, after a lot of thought, I've decided that I'm going to go ahead and do another cycle of GND. Because of all the toxicity that I experienced with this last round, my Oncologist said that he didn't think I should do it and go straight to SCT. I originally agreed as I've been pretty miserable but changed my mind after sleeping on it. My rationale is I've only got one chance to get this right (SCT). The closer I am to remission (or in remission) before SCT the better the odds of a cure. I figure I can put up with another couple weeks of hell for the chance at the big prize of a CURE!

So, time to go into warrior mode once again...

Tuesday, October 7, 2008

Feeling Better!

Finally starting to feel better! My throat, mouth and rash are starting to fade, thank God! The more I think about it, the better I feel about scrapping the last round of chemo and going into SCT.

I plan to meet with my new team next Thursday to map out a strategy. I meet with my regular Onc. tomorrow and will try and probe her for some questions to ask.

As for me, now that the side effects from the chemo are going away, I can honestly say this is the best I've felt physically in a long time. I no longer have the "pleural rub" which was bothering me for quite some time. I no longer have back pain in the evening which was going on for longer than I can remember. In addition, I don't have as much pain in my chest and can take in a deeper breath it seems. All in all, I think the GVD did a job on the tumors which is a good thing. How much remains to be seen once I get a PET scan. Overall, I'm confident that I'm in much better shape heading into SCT than I would have been if I'd have gone in after the ICE chemo.

So, from here, it's in the Lord's and my doctors hands! I of course will continue to do everything I can to help facilitate a successful transplant and subsequent cancer free recovery.

Bring it on!

Monday, October 6, 2008

Scrapping the last round of GND

Well, part of me is relieved and part of me upset. It's been decided that because of the recent severe side effects that I'm going to skip another round of GND and go right into SCT/s.

Apparantly the cumulative toxicity of being on 3 chemo regimens over the last 11 months is starting to take a toll on my body and immune system. For this reason, my doc's have decided to move me into preparations for SCT/s. The rationale is I'm going to be getting hit with such high doses of conditioning chemo prior to being reinfused with my stem cells that my body needs time to rest before this happens. My doc told me that the side effects I'm having right now are very likely to come back as bad if not worse with the next round of chemo. I can't imagine how it could be worse... On the bright side, at least I've been through it and can mentally prepare. I also will be more diligent in mouth care to hopefully prevent such severe mucositis and will know what types of topical agents to use if I get any rashes. Not to mention, I won't try and "tough it out" forgoing pain meds as long as possible and will be proactive in taking them as soon as I feel any kind of pain coming on.

As I lay here on my couch, I realize how incredibly surreal this whole situation is (at least that's how it feels). I'm getting ready to be "reborn" by wiping out my immune system and starting over. These next few weeks and months are going to determine if I live a full life or potentially not make it to my 40th birthday. I guess you can say my life is flashing before my eyes. Remarkably, I feel very calm despite the weight of the situation. I'm sure that'll change as I start going through the process again of being restaged (bone marrow biopsy, PET scan, spinal tap), receiving the chemo and total body irradiation, getting my stem cells back, waiting for my stem cells to "engraft" etc...

No matter what happens, I'll never be the same again I'm sure of that. How can one go through such an epic event and not be changed? If I can conquer this, there's nothing in life that I won't be able to conquer. If I can survive this challenge, there's no challenge in life that I can't overcome. I know this sounds cliche but it's the truth. In a way, I feel blessed that I'm getting a chance to experience this because of the reasons I mentioned. Once I get through this, the world is my Oyster!!

I'll have more details on the nuts and bolts of what's going to happen once I find them out. I still don't know if I'm going to have one or two transplants. I guess it depends on the re-staging PET scan and insurance acceptance (two transplants are still considered experimental by the insurance companies even though the preliminary data is very encouraging). Regarding the restaging PET scan, if I still have active or progressive cancer, they may not want to give two transplants as the first one is considered a "mini" transplant and reduced levels of chemo (Melphalan) are used. The rationale for scrapping this is the cancer could grow further while the transplant is done putting me in a worse situation. However, if the PET is clean, I would think they'd want to do the tandem. It's all speculation at this point and like I said, as soon as I know, I'll pass along the news.

Thanks to everyone who has reached out to me with support! It means the world to me and keeps me going through this tough time.

Saturday, October 4, 2008

PAIN!!

Don't mean to sound like a downer but I need to vent here... I've pretty much been out of commission for the past week plus dealing with a severe case of mucositis and a nasty scrotal rash. Things I took for granted like eating, talking, swallowing, walking etc. have been extremely difficult lately! Everyone told me that this chemo (GND) was supposed to be so mild and well tolerated... It's been anything but for me. I'm thinking it's probably because my body has become so immunosuppressed from successive chemo's and needs a break. That said, I have one more cycle of this stuff scheduled for next Wednesday (if things clear up) then moving on to stem cell transplant. I'm concerned because the chemo used for the SCT is known to be much harsher and more likely to cause severe side effects. You know what they say though, one day at a time...

For anyone out there that has to deal with chronic acute pain on a daily basis, (i.e. rheumatoid arthritis, shingles, etc...) I tip my hat to you. I remember when my Unlcle Rob was sick and going over to visit and noticing how irritable he was (God I wish I could talk to him right now). When you're constantly in pain, you can't function as a normal human being. Thank God I have pain meds and topical numbing agents for my mouth (they call it Magic Mouthwash!).

I received two units of Red Blood Cells today (RBC's). I already notice a slight difference in my energy level and hope it'll facilitate healing in the other areas of my body.

Thanks for reading by bitch session and sorry for not updating for a while. Despite my negative tone right now, I am so thankful and grateful to be alive! I dream about the day when all of this is just going to be a bad memory. A year or two from now, the only way I'll remember this is by looking back and reading my posts.

God has a way of helping us selectively forget about the painful experiences in our life...

Sunday, September 28, 2008

Hail to the Victors!


Just wanted to give a shout out to my Wolverines who pulled off an unbelievable comeback yesterday against #9 Wisconsin! They were down 19-0 by halftime and it should have been much worse as they had 5 turnovers. I thought I was watching the keystone cops instead of the winningest college football program of all time, it was that bad. I'm impressed with Rich Rodriguez for sticking to his guns and proud of all the young players they have on the team for redeeming themselves (Threet, McGuffie, etc.). Gives me hope that things are going to be ok at the big house (now even bigger) for a while.

Go Blue!

Thursday, September 25, 2008

Doc Visit Today

Saw Dr. Shustov today (my Oncologist) and we've put together a roadmap for my SCT/s. We decided to go with one more cycle of GND (I kinda pushed for it) then proceed to transplant 3 weeks after the cycle is done. So, in 5 weeks it's going to happen, yikes... I asked him if I should get another CT scan next week to see what's happening but he didn't want to expose me to more radiation from the scan and they'll need to scan me before SCT anyway.

I'm banking that the GND is still shrinking the tumors and killing the cancer. The only concern is if the cancer becomes refractory to the GND and the cancer grows during this next cycle I'm at more of a disadvantage going into SCT. The upside is if this (GND) is working and I can get into remission (or close) my chances of the SCT working are greater. Stressful to say the least...

To complicate matters, I found out that the sensation I've been having in my right lung is resulting from "pleural rub". In other words, I have fluid buildup (not sure why yet) in the linings of my lung that when I inhale rub together and make a crackling noise. It gets painful at night and early morning but pain meds knock it out pretty quick. As long as this isn't cancer related, I can deal with it so no worries for now.

That's the latest, as soon as I hear anything more I'll update.

Sunday, September 21, 2008

Sad Sunday...


I got some bad news today about a friend of mine that passed away last week in Florida. His name is Paul Hutko and we'd been buddies for a while back when I lived in Warren MI. We met through my buddy Dan when they used to bag groceries together at Foodland. Paul was known for being a fun loving crazy guy who loved to sing, do imitations, crack jokes and laugh. I'd have parties at my place in Ferndale where we'd play guitar and Paul would sing at the top of his lungs and everybody would laugh and love it! The guy loved to entertain people and always dreamed of being in a band or some type of entertainer. He used to DJ at this bar in Royal Oak called Hi Tops and would crack jokes and rock out Elvis tunes. The guy truly was one of a kind. I think one of his proudest accomplishments was co writing a screenplay with his buddy Andy that was actually made into a movie called "The Discontents". Paul was a good guy and I'll definately miss him.

On a positive note, I think (hope) my tumors are still shrinking. My guage is a node that I can actually feel under my left armpit which seems to be shrinking. My hope is that the rest of them are melting away as well. I've been imagining my immune system (white blood cells and t cells) along with the chemo "removing" the cancer cells from my infected lymph nodes. Also been saying a lot of prayers! It feels good and very empowering to be able to participate in your healing. I wish I would have known more about this before but everything happens for a reason I guess...

By the way, I'm embarrased to say I'm a Lions fan after watching another pitiful performance today against the 49ers. I can't wait until the Pistons and Red Wings start so I can feel proud watching successful Detroit sports franchises (can't forget about the Shock too ladies!).

Finally, I wanted to mention a fellow Hodge warrior who is having a hard time right now after a long fight with the disease. She's been through two transplants and has complications from her second transplant where she received a donor's stem cells. The donor cells are attacking her good cells, a condition called graft versus host disease. She is truly a warrior and has my utmost respect and sympathy. If you want to check out her site and wish her well it's http://jenniferwilley.org/ You can sign her guest book if you want. Believe me, it's nice to get positive messages when you're going through hard times even if they are from strangers.

Anyway, I hope everyone had a nice weekend and will try and post again after my infusion this Wednesday.

Wednesday, September 17, 2008

Round 2 GND!



Ok, here I am again at the SCCA and Jim my infusion nurse just hung my first bag of Gemzar. This is the first of the three "healing potions" I'll be receiving today. As I told Jim, the first cycle of GND was my "jab" at the cancer as it shrunk some of the tumors. I'm looking at this cycle as the "uppercut" which will continue to shrink those tumors and start to shrink the others. I need this as I can feel something in my back press against my lungs when I inhale. It's on the right side and I'm hoping it's scar tissue or inflammation from the last treatment. We'll see how things go as I know part of getting chemo is getting used to mysterious aches and pains throughout the body. I think I now have an idea of what it's like to experience old age (no offense to anyone up in years out there)! I also changed my first tune on my media player to welcome the chemo. I was reading a book and a woman who was receiving radiation pictured the radiation as sunlight entering her body. Why can't I do the same about chemo?!

Kinda ironic that I've actually started to feel better today than I have in about a week. I had a nasty case of mucositis this last week which made it tough for me to eat, drink, talk, etc... Thankfully the sores are healing and I'm able to eat and talk again! My energy is back too after being exhausted the last few days due to low platelet counts. Such is cancer as now that I feel better, I have to get more chemo that may bring these side effects back over the next few weeks. Crazy how this works but it's the price you have to pay to get better and I accept that.

On a good note, I've had buddies here for the last week. Dropped off Mike on Sunday heading back down to Long Beach CA. It was his first time in Seattle and I think he enjoyed it. We had nice weather which helped. Getting ready to drop off Dan tomorrow morning early (5:10 flight, yikes!). These guys are like brothers to me and it was great having them here helping me feel "normal" for a while.

I'm continuing my investigation of the mind body connection as it pertains to healing. I'm reading a fascinating book (Love, Medicine and Miracles) by Bernie Siegel M.D. The book was given to me by Jackie's neighbor who somehow knew that I was sick without ever talking to me..., weird. I wish all doctors practiced medicine like this guy. He treats your mental health along with your physical health while stressing nutrition and has achieved some very good results. I'm becoming more and more convinced of the connection between mental health and physical health as I read along.

What does this mean for me? Well, I've already started positive visualization techniques through meditation. I've also started to express these visualizations in the form of drawing and painting! I went out and bought my first beginners paint set with 5 colors, a couple of brushes and a canvas. I have to say that I have zero artistic talent and that's an understatement. I did my first painting of a Hodgkins tumor cell surrounded by my killer T cells and had the Hodgkins cell spewing blood and not able to take on all of the T cells! So my artwork is a work in progress but I find it soothing and cathartic and plan to continue. Who knows, maybe I'll get a little better and have the nerve to show someone my work one day! By the way, all of this may sound weird to some of you and I understand that. Please know that I'm not losing my mind but just trying to use everything I have in my arsenal to beat this stinkin cancer...

By the way, I have to thank my buddy Dan for getting me into painting as he's been doing it now for over a year and getting pretty good. He's actually getting ready to enter some of his work into an art fair down in Delray Beach FL. Hope he does well...

Finally, looking forward to Jackie coming home from New York! She's been over there active in her new roll as a Buyer for Amazon.com! So, if you need any towels or kitchen items, take a look at Amazon for some of Jackies' stuff. How's that for a plug babe?!

Till next time...

Friday, September 12, 2008

Finally Some Decent News!


So, I'm here at the SCCA getting two units of blood as my Hematocrit and Hemoglobin were really low (I've been a sack of potatoes for the last few days). My nurse just left and gave me some optimistic news! My CT results came back from yesterday and apparantly some of my tumors have shrunk and some of the others have stayed the same. The best news, no new cancer growth! It's still way too early but it looks like the GVD chemo is starting to work. Ideally, I'd like to hear that all of the tumors have shrunk but I'll take what I can get at this point. I still have a long ways to go to get to Stem Cell Transplant mode but it seems like I'm heading in the right direction. Hope to keep it going!

After this, my buddies and me are going to head to Pike Street Market and watch those dudes throw some fish, grab some lunch (all they had here was egg salad sandwiches, yuk!) and enjoy the day. Tomorrow, I think we'll take a drive over the Cascade Mountains to check out the Columbia river and on the way back go for a hike at Denny Creek to check out two beautiful waterfalls. Should be fun!

Life is Good!

Thank you God...

Sunday, September 7, 2008

ONCE


Jackie and I rented a movie last night and it was so good I thought it worth mentioning on my blog! I'm not normally into romantic love stories but this one really was great. The music was written and performed by the two main characters. I don't know if it's just me but it seems like there's a major shortage of good movies to rent these days (possibly the after effects of the writers strike) but this one in my opinion is definately one to check out.

As for my status these days, just trying to stay positive. I can still feel the tumors inside of me and I'm just hoping they're shrinking/dying... Jackie's neighbor gave me a meditation CD today geared toward strengthening the immune system. The guy who created it is an actual doctor. I've been reading up lately regarding the mind body connection as it pertains to healing and a lot of it makes sense. At this point, I'm willing to try anything. If nothing else, it's very relaxing! I have a CT scan this Thursday to find out if the GVD chemo is starting to work. They (my doctors) want to avoid the last scenario where I went through two toxic cycles of ICE with it only holding my disease stable and not reducing the tumors.

I've got a couple of good buddies coming in on that same day which I'm looking forward to! My buddy Danny's coming all the way from Delray Beach FL and my buddy Mike is coming in from Long Beach CA. Funny, we cover 3 out of the 4 corners of the United States but all of us went to the same high school! Mike was actually my roomate when I lived in Southern California. Danny's visit is still pending a miss by hurricane IKE on South Florida, so I'm keeping my fingers crossed.

Thursday, September 4, 2008

Bye Bye Mom and Nicole!


Dropped off my Mom and Sister at the airport today... It's going to be weird not having family here as I've had my Dad then Mom and Sis here the last two months. They've really helped me "keep it together" just by being here for me (Mom, you're cooking helped too ;).

As you can imagine, having cancer and an impending grueling treatment regimen is tough. I don't know if Jackie and I could have done this alone. What I mean is dealing with the tricks that one's mind tends to play when you keep getting bad news. When you have people surrounding you that love you, it gives you comfort. My family has allowed me to build up strength for what is ahead of me. In other words, Jackie and my batteries are charged up now to deal with this on our own for a while. God willing, if I do move to stem cell transplant/s I know they'll be here for me again.

I also want to point out how proud I am of my sister. She like my Mom are cancer survivors. Unfortunately my sister deals with residual issues from her battle that makes life more difficult for her. I just want to say that I'm proud to have her as my sister and know that things will get better. We're both going to get better together through getting help from our doctors and with the help of our family and friends. There is light at the end of the tunnel for both of us Nicole!! Love ya :-)

Wednesday, September 3, 2008

2nd GVD Infusion


Well, here I am in the chair for my second GVD infusion. I’m excited to get the medicine flowing through me to help me in my continued quest of “remission”. I think the first infusion has done some damage to the tumors as I no longer feel the back pain in the evening like I did in the weeks after ICE. I can also feel the small tumors (under my arms, on my spine, in my abdomen and in my right pectoral area that showed up on my PET) dying or being squeezed. Yeah, I guess the best description is a squeezing feeling rather than pain. I’ve read on my Hodgkins forum that this is a common sensation from chemo that my fellow posters report as “tumor shrinkage pain”. I know this is what is happening to me too…
The large tumor in my chest seems to be shrinking as well. I can take deeper breaths these days and can hold my breath for 1-1:30 without too much trouble. There is scar tissue in my chest from the Bleomycin (from my first ABVD regimen) so I think the pain I feel in my chest when inhaling is from the scar tissue (mostly) rather than the tumor. I think this infusion plus another cycle will be enough to shrink and kill this tumor for good!
There is an area that is more of a mystery and I’ll be trying to monitor it more closely… The area I’m referring to is the tip of my 5th rib posterior which contains a lytic lesion that’s been there at least since February of this year according to CT scans. There is a soft tissue component in the rib that contains cancer and has been eating away at the bone. The SUV level on my last scan was 7.0. I’ve had pain in this area since I’ve had disease. In fact, I can remember one night when I was living in Socal where I woke up feeling like someone stuck a knife in my back. This is an area that I felt intense pain after a few sips of alcohol as well. Once I finished the ICE chemo, the alcohol pain went away thankfully. Like I mentioned, I have experienced pain in this area recently (dull pain) especially yesterday starting in the afternoon. This area along with the tumor in my chest will be putting up the most resistance to the GVD chemo I think.
I can imagine however the GVD chemo working with my immune system in this area especially hard for this infusion and my next cycle since a lot of work has been done on the smaller tumors. Gabe, my Oncologist’s P.A. mentioned to me that there are tons of blood vessels that go through the rib area so it’s only a matter of time before the cancer in this area puts up the white flag and submits to my hired (GVD) and own bounty hunters. I will have a hollow area in that portion of the bone but through research have found out this can and will heal in a couple of years. There may be some discomfort during this time but nothing I can’t handle.
Finally, I want to say something about my immune system. I know that it is capable of protecting me from this and any other cancers once we get this thing into remission. The last few years I have taxed my body with stress and bad sleeping patterns not to mention putting things in my body that don’t help keep my defense systems strong. I now know the importance of rest, good nutrition, relaxation and prayer and how it can help my immune system fight off foreign invaders. This is why I know the GVD chemo will work for me as it’s gentler on my immune system which is needed to help the chemo rid my body of the Reed Sternberg cells and ultimately prepare me for my stem cell transplant.

Monday, September 1, 2008

Bumbershoot!




What a fun weekend! Who says you can't live life with cancer! :-) Went to all three days of the Bumbershoot Music Festival (been coming to Seattle since 1971) and had a great time. Had a chance to see Beck, Stone Temple Pilots, Death Cab for Cutie, Xavier Rudd, Orgone and some others. The whole experience was awesome, Seattle Rocks! I felt pretty good as I've been able to tolerate the GVD chemo reasonably well. The only side effect so far has been fatigue and minor nausea, things I can live with...

I'm continuing my visualization of the cancer dying in my body and writing about it helps me continue to do so! Who knows, maybe you don't need to have major side effects and feel like total crap for chemo to work (i.e. ICE chemo). I've got another infusion this Wednesday so I'll do my best to enjoy these next couple of days. Plus, my Mom and Sister are leaving Thursday so I want to enjoy my last couple of days with them. It's been really nice having them out and will definately miss them when they leave. I've come to realize more than ever how important family is...

By the way, I've finally figured out how to install a music player on my blog. I've been trying to pick tunes that reflect the state of mind of a cancer survivor. You try and stay optimistic and positive but the reality is you don't always feel that way. Emotions like anger, fear, anxiety and sadness creep in and I think it's reflected in the music (although I've tried to focus on the inspirational!). It's a work in progress like this blog and any recommendations are welcome. You can make comments by clicking on the comments portion of the blog (duh!).

Well,that's all for now, hope everyone had a great holiday weekend. Sorry for anyone who lives in the New Orleans area and had to evacuate. Prayers are with you...