Saturday, January 31, 2009

Almost Moved In

Getting ready for bed after an epic day of moving. Every muscle in my body is sore but it's a good sore. I'm also unbelievably exhausted but it's an awesome exhausted. Neither problems are from mass amounts of chemo or radiation but activity/productivity I managed to undertake (with help from my buddy Roger and Jackie). So, most of my stuff is crammed into my 10x10 storage facility. I need to go there tomorrow and during the week and re-configure my packing as I'm wasting a lot of space I think not to mention not giving myself any access to any of my stuff. By the way, what an easy business to start and maintain, a storage facility! I mean, all you have to do is build it, have a couple people work the counter to sigh up new clients and off you go. They must have 1000 storage units or more at this place at over $100 a month on avereage. Not too bad. Almost as good as someone dear to me's dream of owning a parking lot ;) Very low maintenance, the way she likes it. Just sit there and collect the money right?! I surround myself with some true entrepreneurs.... :-)

Anyway, I should be making my final pick up and drop off tomorrow and it couldn't come soon enough. I've been doing this for the last 2 plus weeks. I can attribute my moving with me getting my strength back. I can definately tell the difference in my strength. Good thing my buddy Roger used to work for a moving company for a living and actually carries things back and forth on his route so he carried us both. I'll get you back Roger, no worries.

So, this starts a new chapter for Jackie and I as we're living together for the first time in 5 years or so. I've hired my dog Chili as the moderator just in case things get a little hairy as this place is pretty small!

Time to cut this short so I can get ready to crash. I've caught a case of the hiccups that won't go away. Nothing like chemo hiccups thank God. Maybe I can sleep them off.

Good night all...

Wednesday, January 28, 2009


Just got done wathching Benjamin Button... I have a newfound respect for Brad Pitt as an actor. I've always enjoyed his movies but think this has to be one of his best roles. The movie was really good, well written and acted -- really original story...

I had my discharge clinic today and said goodbye to my transplant team. I'll miss everyone there (even nurse Dot!). They really go out of their way to make you feel like a dignified human being, not just a cancer patient. I did get some sobering news from Dr. Holmberg however that was a little tough to hear. We were talking about when I can get my Hickman line taken out and what she thought about my long term prognosis. In her words, she said "the majority of patients who have my type of disease will not be cured". In other words, it's very likely that I will relapse at some point. I wasn't really surprised by this as I've done plenty of research regarding cases like mine. That said, my sister survived a Glioma brain tumor (18 years cured) and my mother survived 2 bouts of breast cancer (cured) so who says I can't beat this?! Even if it does come back, there are plenty of clinical trials out there that can prolong my life for years... I'm just going to enjoy every minute of my life the best that I can and hope and pray for the best. If nothing else, this whole experience has really strengthened my faith in God. I'm comforted knowing that whatever happens, there's a better life to be experienced after this one.

I hope this doesn't come across too heavy and pessimistic as I'm still hopeful and optimistic that I'll be cured. As I've explained to a few people that I'm close to, this is just my way of making sure I don't get hammered again by raising my expectations too high. When I went through my first course of treatment, six months of ABVD chemo, I was completely devastated to find out it didn't work. I couldn't sleep, couldn't eat, couldn't sit and watch a television show, couldn't even leave the house -- it was that bad. It took me a while to adjust (not sure if I've ever fully adjusted). I can't let that happen again if for some reason this doesn't work...

So, from here I've got big plans! Jackie and I are going down to Laguna Beach for a long weekend in a couple of weeks and I'm really looking forward to it. After that, I'll start planning my road trip around the country as my body continues to heal. Once I return from my trip, I plan to start my life over by looking for a job and possibly returning to school to get my Masters. I also plan on volunteering at the SCCA or some other cancer clinic to help out any way I can. If I'm still here in Seattle, the SCCA has a volunteer driver position to pick up out of state transplant patients and their families from the airport. Having gone through this, I think I can offer some good perspective regarding the transplant process and more importantly help folks feel as comfortable as possible here in Seattle.

So, now that I've laid out my long term future plans, I'm excited to say we have plans for this weekend! It'll be my first time out in a social gathering and I'm a little nervous with this bald head/face... Jackie works for a major company here in Seattle and they're having a big shindig (which according to most who went last year is supposed to be quite a party). I'm gonna get decked out with a blazer and plan to sport this nice brimmed hat I picked up a while ago. Should be fun!!

Here's to life getting back to normal... :-)

Friday, January 23, 2009

In an effort not to freak anyone out regarding my daily anxiety regarding my various aches and pains I've decided not to post here until I have substantive news. I realize I need to chill out and let this thing take it's course. I see my transplant oncologist on Monday for my discharge clinic fyi. I probably won't know anything until I see my regular oncologist on Feb 2nd.

Thanks everyone for all the support...

Thursday, January 22, 2009

Slight change of plans... Went to the clinic today and apparently my hopes of getting my Hickman line out early were a tease. I kinda felt it was premature but my P.A. Kerry likes to be Mr. Sunshine I guess and got me all excited for nothing. After consulting with my transplant doc, Dr. Holmberg, she wants to wait and let my Oncologist Dr. Shustov make the call when she transfers my care over to him. They're just being cautious as I've been having pain in my chest/back not to mention having the palpable node still under my left arm. Kerry probed it today and told me he isn't worried about it as it's "mobile" and very small. In other words, he said if it was cancerous, it wouldn't be movable and probably much larger. My skeptical side said "well, it's only been 27 days so these conditions could still develop right? In addition, they can't explain the pain in my chest except to say it's probably scar tissue. Again the only true determinent will be a PET scan. That said, they may do a preliminary CT scan in a couple of weeks to see if anything has gotten larger in there. At this point, and for a while now, I'm just kinda numb to the whole thing. I mean, there's nothing I can do but wait. I'm eating anti-inflammatory diet, keeping my stress low, starting to work out, meditating/praying, what else can I possibly do?! I just need to live my life and understand this is out of my control.

Speaking of living my life, I'm glad to say that my appetite is back in full swing! They weighed me today and I've gained 3 pounds (up to around 168 from 165)! Better yet, I think my taste buds are starting to grow back as well. I just stunk up Jackies house by roasting a glove of garlic in olive oil, seasoned with salt and pepper and spread it onto a slice of 4 cheese sourdough bread (which I browned in the garlic infused olive oil in the pan). It was delicious! Also had some Green Curry Thai food today for lunch from this new place I discovered in West Seattle. It was the best Green Curry I've ever had as they used red pepper, shitake mushrooms, chicken, slivered zucchini, carrots, etc... The best part of it was the brown rice. It was almost like they grew the rice themselves as it was almost dark brown, not faded brown like most brown rices I've tried. I feel like me and good food are long lost friends and I'm so happy to have you back my friend! I'll never ever take eating well for granted that's for sure.

So it looks like this weekend Jack and I will be doing the majority of move into my storage unit (and into her place). My place is in shambles right now but have been making progress dropping off car loads every night to my unit. I took tonight off as my back was killing me (either from disease or general soreness). The only daunting items I have are my dresser and televisions which are both heavy. Believe it or not, my couch is very light as it's made from polymer instead of wood (Pier One!). I'm at the point now where all I need to do is put everything left in boxes and carry it out to the car or truck. I think I'll rent the truck next weekend and be done with it. I feel bad as Chili will no longer have a backyard to run around in. Thankfully, there's a nice park two blocks down where she can run till she drops (or my arm falls off from throwing fetch balls)! I think the change is going to do everyone good though and really looking forward to it. For some reason (well, for many reasons) I don't feel welcome at my current apartment and the worst feeling is feeling unwanted. I can feel good about myself however as the place didn't have a kitchen when I moved in and built one for my landlord at no charge. The place is in way better condition than when I moved in and can feel proud of that. Here's a couple of pics, I'll miss the view...

Wednesday, January 21, 2009

Hello Everyone, getting ready for bed and thought I'd do a quick update. Thankfully, my stomach pains have gone away! My back is feeling a bit better too but still dealing with some pains in my chest. I really think it's residual inflamation from all the treatment I had (namely the TBI). The pain seems to come from my tumor sites and is most prominent when I inhale suddenly or deeply. Come to think of it, I've actually had this problem ever since I can remember (while having disease) so who knows... It's in God's hands at this point so worrying won't do me any good. Speaking of that, the energy healer I've been corresponding with advises me that trying to fight illness actually does more harm than good (if that makes any sense). He says that by mentally obsessing over fighting the ailment actually takes away from the body's natural energy for healing. So, the best thing you can do is accept whatever it is that's wrong with you and be at peace with it. Once you are at peace, your immune system can devote all of it's resources in fighting whatever it is that's wrong. I tend to agree with him as I've noticed that when I worry or obsess over a certain pain I'm having, it gets more intense. When I relax and try not to worry or concentrate on something pleasant, the better I feel. Also, focusing on breathing (visualizing the breath entering your body and visualizing it leaving) is very therapeutic.

On another note, the weather here has been really weird. Thankfully, the cold and snow are long gone. In it's place however has been an eery fog that is so thick you can see the crystals in the light. It makes for some interesting driving at night! I have to drive super slow as you can't see the street signs and barely can see the street lights. Last night I drove home and kinda felt like I was in an episode of the Twilight Zone! When you're on the road, you can't see any other cars and feel like your the only one on the roads. Actually, you kinda feel like your the only one left in town, it's that creepy! I was quickly comforted as I pulled up into a Taco Bell to find out they were open and ordered a spicy chicken burrito and steak soft taco, comfort food at it's finest ;-D

Also, just wanted to give a shout out to Barack Hussein Obama. Good for him that he was proud to say his full name at the innaugaration and dismiss all of the haters saying he was a terrorist. What a bunch of crap! It's only been a day but you can already feel the tone of nation changing. I think this is the byproduct of being elected on a unity platform rather than the divisive platform Bush/Rove used. I truly hope the days of wedge politics is over as the Republican party picks up the pieces left over from the short sighted election tactics of the last administration. It's official, divide and conquer may get you elected but will not reap long term success because we as Americans are tired of partisanship and exclusion. The best line came in 2004 when Obama said that there is no red America, blue America but the United States of America! We are at our best as a country when we're all pulling in the same direction for a common good. To set the tone, Obama first hosted a dinner for the conservative press (unheard of), then to take it to another level hosted a dinner for John McCain and some other retiring Republican Senators! He seems genuinely willing to be a leader of the people, not just a select few. Have to say I was proud to watch today and excited about what's going to come out of these next few months. I wouldn't want his job however...!! What a mess he has to clean up.

Enough about politics, how about the Super Bowl? I have to say I was really impressed with the Cardinals. What a game plan they executed to dissect Philadelphia and their aggressive defense. Not to mention, what a performance by a supposedly washed up quarterback in Curt Warner. It always seemed like he was one step ahead of the defense which is amazing as he was almost out of the league a few years back. Pittsburg is going to be tough though as they have some beasts on defense. I think for Arizona to win, they'd need to improve on their performance from last Sunday which will be tough to do.

If anyone is doing squares, I'm in for a few!

Sunday, January 18, 2009

Just sitting here watching SNL, Fleet Foxes were the musical guest... I've been wanting to see them for a while after listening to their new CD almost every night before bed for the last couple of weeks (their music is so relaxing and soothing). My energy is starting to slowly come back but I've been dealing with some other issues which are kinda scary. I've been having pains in my stomach, back and chest. I didn't really have any disease in my abdomen so hopefully it's not new disease forming. I did have plenty of disease in my back and chest however and hoping it's just inflammation and scar tissue from my treatment. I'm also keeping an eye on the node under my arm and it seems to be the same size since I finished treatment so hopefully this is just scar tissue as well. I just have to stay strong until my post SCT PET scan, easier said than done...

Other than my post SCT drama, life is slowly starting to normalize. Jackie and I went out to dinner last night and tonight! I still can't really taste the food but imagine it was delicious ;) I had a salad with roasted red peppers, grape tomatoes, mixed greens, calimari and a spicy dressing. Jackie tried it and said it was great! I also ordered chicken quesadias with smoked cheese, black beans, carmelized onions and salsa/sour cream. Even though I couldn't taste much, I'm getting my appetite back which is great! There are certain things however that I can taste like grapfruit/orange juice, black chocolate, pomegranite/acai juice, etc. It seems like the tangier the food, the more I can taste it. I'm going to experiment with a citrus type dinner tomorrow, maybe lemon chicken or something. Or, I can try some sushi or tai food with lemon and soy. Or, maybe some salmon marinated in lime. Man, I'm starting to get hungry again writing this! Maybe if I write about what I'm going to eat before I eat it, it'll taste better. My doctor actually recommended closing my eyes before I take a bite and smell the food to help. Tried it and it didn't work, oh well. Before long, those little things we take for granted, taste buds, will grow back and everything will be good. Time for me to sip on my pomegranite green tea ;)

Tomorrow we plan on checking out the Hopper exhibit that's at the SAM (Seattle Art Museum) and of course watching football. I'm also in the middle of moving out of my apartment so I'm trying to keep myself busy which is good. This also means taking plenty of naps in between as the simplest little thing like moving boxes out to my car feels like I just ran 10 miles. It's amazing how little stamina I have these days...

Finally, wanted to say thanks again Mom for taking care of me and keeping me out of the hospital ;) Glad you're home safe and will miss you. Looking forward to seeing you guys soon...

Tuesday, January 13, 2009

Free and Clear!

Sorry for no updates lately, I've been exhausted and there really hasn't been a whole lot to talk about. Went to the clinic today and found out that I won't need to go everyday, just 1x week now! Slowly but surely my life is starting to get back to normal. I've also booked a trip home for my Mom and she'll be leaving this Thursday afternoon. I know my stepdad Rich and my sister Nicole miss her so it'll be nice for her to see those guys again. I'm going to miss her too.. Too bad it's only 2 degrees in Michigan!

Also nice that Jackie is finally back after 3 weeks away in Michigan and Atlanta. I think the 3 of us will go out to dinner tomorrow night to celebrate (there's a lot to celebrate!).

That's pretty much it for now, I'll update when I have some more energy...

Friday, January 9, 2009

Day 14, Just About There!

Just got home from the clinic and I've got a little pep in my step! I think by tomorrow or Sunday I'll be able to re-enter the world and break out of the bubble! No more daily visits to the clinic! No more isolating myself in this apartment! No more having to worry about sanitizing my hands every 10 minutes! No more paranoia about the foods I eat and making sure they're properly cooked! Take out food and eating out are now ok (even sushi!)! Most importantly, I can feel like a regular person again (somewhat). I still look like a freak with a completely bald head, no eyelashes and very thin eyebrows but that will come ;)

I'm also proud to say that I'm the only person (according to my P.A.) that's stayed out of the hospital for both transplants! I thought for sure I'd have to go in for this one but somehow I stayed out (knock on wood).

Another great piece of good news I received today is they're going to take my Hickman line out! Looks like around Jan 22 or so they'll be yanking this pain in the ass out of me (see pic). You can't imagine how much a relief it's going to be to be able to take a normal shower again! With the line in, I have to cover it up then wrap each clave with this stretchy plastic. Not to mention, the daily task of flushing each side and keeping it clot free with Heparin. Also, no more changes to the dressing which kept bacteria from creeping into my chest (the pic is dressing free). I have to figure out what I'm going to do with it once they remove it. Maybe I'll turn it into a piece of art. Maybe I can burn it... Maybe I'll just throw it away... It's just going to be nice to not have it in my body (although I'll have the scars forever...).

With all this said, I still know the most important milestone will be the 100 day mark when they scan me to see if the cancer is all gone. I'm not going to get too caught up in these little victories as I know the war isn't quite over. For today though, I'm going to enjoy the good news and cross the other bridge once I get to it.

Thursday, January 8, 2009

Day 13, Almost There!

Just sitting here getting ready to watch the national championship game... Found out today that my counts are still rising! My white counts are almost 2 thousand, my neutrophils almost .25 and starting to make platelets (no more infusions, yeah!)! Also, my mouth and throat are feeling much better and I'm trying to eat a little more. The thing that sucks is I still don't have any tastebuds. I found out that like everything else that has died in my body (including those bastard cancer cells) my taste buds also need to "regrow" from the high dose chemo. The doctor told me this could take up to two months. I'm hoping they grow back much sooner :-)

Soon, I won't have to go the clinic everyday which will be nice! Other than doing that I've just been doing a lot of reading and updating my music library in preparation for my trip. I've also planned an anniversary get away with my girlfriend where we'll be going down to Laguna Beach for a long weekend in February. We'll be staying at this beautiful old Hotel ( which is right on a cliff off the Pacific Ocean. When I lived in Orange County, I used to live right down A1A in Newport Beach so I'm really familiar with Laguna which will help us maximize our time there. It's just going to be nice to get away!

Back to the game...

Wednesday, January 7, 2009

Day 12

"If we understand that the cause of suffering and dissatisfaction is attachment, then it's obvious that the remedy is simply letting go. Why are we afraid to let go and let the natural mind just be as it is, radiant, free and aware? Why do we hold on to the past and resist the fresh current of nowness? Neurotic behavior is sometimes defined as a frozen pattern. It's very therapeutic to thaw our frozen patterns and develop spontaneity and awareness of "what is" and the joy of the present moment. If you cling to nothing, you can handle anything. This is wisdom. Try to grasp this, but lightly..."

I pulled this quote from a book I'm reading and thought it couldn't be more appropriate for my situation.

Almost out of the woods as I'm starting to show some neutrophils! Pretty soon I'll be able to join the world again, what a concept ;-)

Monday, January 5, 2009

Happy Birthday to Me!

It's my birthday! Feeling pretty good and feeling blessed... I got to jump the front of the line at blood draw this morning, yee haww! My Mom's going to make some lentil soup for dinner and has baked a delicious cheescake for desert. Wish I could taste it but know it's going to be delicious so I'll fantasize how good it is ;)

Just ordered my Flamenco guitar and can't wait for it to get here. Think I found a pretty good teacher here in Seattle as he's been doing it for 38 years. I can visualize myself on a beautiful summer night sipping on a nice glass of red whine strumming the guitar. Ahh yesss! Can't wait...

Life is good :-)

Sunday, January 4, 2009

Day 9

Happy Sunday Everyone!

Just sitting here wathcing some football. Things are going pretty well as I'm starting to feel a lot better! My mouth and throat are still a little sore and I haven't been eating a whole lot (can't taste the food anyway) but I'm managing to keep myself hydrated and nourished.

I've been reading this great book by Schreiber called "Anticancer, A New Way Of Life" and have to say it's excellent. Schreiber is actually an MD (psych/neurology) who is a two time brain cancer survivor. He talks about the importance of an "anticancer" way of life for both survivors and people who want to do everything they can to prevent cancer in their lives. The first portion talks about diet and nutrition and how the cancer rates have exponentially skyrocketed since World War 2. There are several contributing factors here but a couple that stood out most to me is the ever increasing inbalance Omega 6 / Omega 3 fatty acids in our diets. Because food has to be produced so much faster, cows and chickens are fed Omega 6 sources of food like corn and therefore the meat is loaded with this type of fat (which too much of will lead to health problems). Grass fed beef or free range chickens who eat a natural diet are much better for you. There are obviously other sources of Omega 3 fats (salmon, nuts etc.) and the idea is to balance your diet with a 1 to 1 ratio of Omega 6 and Omega 3 fats. Another major contributor to the cancer wave is the mass amounts of high fructose corn syrup found in foods. One's body has a hard time breaking down this toxic substance and too much sugar leads to an acidic body chemistry which is a great enivornment for cancer to thrive. (By the way, apparently we all have cancer cells in our bodies). The way you help keep them from forming tumors is to keep your immune system strong. The author sites diets from the Mediterranean region and Far East as being the best diets for preventing cancer. The Mediaterranean diet uses a lot of olive oil (great omega 3 source) tomatoes (which contain Lycopene which is great) and plenty of fruits and vegetables. He also mentioned the importance of avoiding "white" foods like white rice, bread made from bleached flour (multi-grain or sourdough better), white potatoes (sweet potatoes are great) etc. He really hyped up the Indian diet which uses a lot of Turmeric (curry) which has shown to block the formation of necessary blood vessels necessary to sustain a tumor. Green tea is another powerful agent which performs the same role.

I could go on and on about the diet... If you don't read the book, there's plenty of this information available online. He also mentions the importance of reducing or eliminating stress in your life through meditation. There are several studies he references where people who adhere to the anticancer diet, meditate and regularly exercise are far less likely to get cancer and for those who have it have been able to extend their lives far longer than those who don't make these changes.

Enough of my book review, sorry! My life is pretty boring these days so I can afford to sit here and ramble on...

Friday, January 2, 2009

Day 7

Went in today for more platelets... I think they're working as my nose has cleared up and don't notice any more red urine, thank God. They've given me Morphine Sulfir tablets for my Mucositis and it seems to be working ok. Of course I'm a little drowsy from it but not worried as I'd probably be drowsy anyway! I've also got this nasty rash that's been spreading from my shoulders down my arms. They say it's from the radiation but think it could also be from the chemo. I've got some Men-Phor anti-itch cream but it's not really doing much. At this point, the rash is kinda getting buried under the other issues so I'm not really focusing on it which is good.

I've been busy expanding my music collection on my I-pod to prepare for my long road trip coming up. Just got a handheld GPS from my Dad and Marty (thanks!) so that should come in handy too...

Also decided to cash in my credit card points for gift certificates to this electronic store. I was originally going to get a GPS but now that this is taken care of, I'm thinking of getting this beautiful Washburn classical/flamenco acoustic guitar. I already play the acoustic but have always wanted to learn Flamenco so I can't wait! As soon as I'm not neutropenic I'm going to search around for teachers and start taking lessons...

Also wanted to send out good vibes for Jackies Dad as he's in the hospital for what they think is a pneumonia. Here's to hoping it's just that and it clears up quick!

Other than all of that, things are pretty mellow here with my Mom. We've been watching a lot of tv and she's been keeping herself busy with a needlepoint project ;). Tomorrow I think we'll break up the monotony and head to Jackies to watch another movie.

That's it for now, hopefully only another week locked in the cabin! Also, getting closer going 2 for 2 staying out of the hospital! I think the only thing that would land me there at this point is a fever, knock on wood...

Thursday, January 1, 2009

New Years Day

Happy New Year Everyone!

Just got done watching the Winter Classic where my Wings put it to the Chicago Blackhawks with 5 un-answered goals after falling behind 3-1 in the first period. It was pretty cool watching a hockey game outdoors at Wrigley Field although it seems like it'd be better to watch on TV rather than being there. I guess it was 1 degree outside plus all the seats seemed so far away from the ice... They were saying that having an upper deck seat was actually the best way to go for an event like this so you could at least look down at the game. Maybe they'll do this at Comerica Park in Detroit one year...

Had a nice New Years Eve last night once I received my red blood cells at the clinic for 5 hours! Got a little burst of energy thankfully... My Mom, Ken and I went over to Jackies place last and watched a great movie that's coming out Jan 9th called Grand Torino (Clint Eastwood). It was especially cool for me that it was shot in Detroit (Higland Park) in the same horrible area that 8 mile was shot. I guess there's going to be quite a few movies that will be shot in Detroit as apparently the politicians are giving huge tax incentives for the movie companies to shoot there. Like I said though, it was a great movie and highly recommend it when it comes out to theatres.

By the way, I wanted to say farewell to my Cousin Ken as he took off for Chicago early this morning. It was great having him here for support and can't thank him enough for helping my Mom and I get through this tough time... Look forward to seeing you in Chicago Ken!

Speaking of tough times, things are getting kinda crazy with my body. When I swallow, it feels like a bowling ball is going down my throat. Understandably, it's been really difficult to eat and drink. I've also been bleeding as my platelets are low again (need another transfusion tomorrow). I noticed blood come out today when I urinated which really freaked me out (never happened before). I also have constant blood in my nose which is partly from the platelets being low and it being dry in the house. The doc prescribed some saline spray for my nose which should help. I also hope the platelets last a little longer this time, hopefully long enough until I engraft and can start making them on my own again...

That's pretty much it for now. Time to go down for a nap and wake up to watch some football!