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!

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.

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.

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...

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...

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.

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 :-)

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.

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...