Monday, November 29, 2010

Back to Basics

Well, it didn't take long to find some serenity... I'm going back to basics and one of my favorite Buddhist teachers, Thich Nhat Hanh. I remember reading a few of his books when I was first diagnosed and how calming they were. It's important for me to remember to be mindful as I've been getting caught up in the fear of being sick (and this developing cough).

Here's some of my favorite quotes:

“Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.”

“And once we have the condition of peace and joy in us, we can afford to be in any situation. Even in the situation of hell, we will be able to contribute our peace and serenity."

"Waking up this morning, I smile. Twenty-four brand new hours are before me. I vow to live fully in each moment and to look at all beings with eyes of compassion."

"The kingdom of God is available to you in the here and the now. But the question is whether you are available to the kingdom. Our practice is to make ourselves ready for the kingdom so that it can manifest in the here and the now. You don't need to die in order to enter the kingdom of heaven. In fact, you have to be truly alive in order to do so."

"When we walk like (we are rushing), we print anxiety and sorrow on the earth. We have to walk in a way that we only print peace and serenity on the earth... Be aware of the contact between your feet and the earth. Walk as if you are kissing the earth with your feet."

"Know that life can only be found in the present moment."

— Thich Nhat Hanh

Of course, I'm hopeful that whatever it is that's festering in my body (hopefully just a bug) goes away quickly and I can get back to feeling relatively well. If not, I'll be going in to see Dr. Ramchandran asap so we can put a plan together to get me back on track. If it's the disease growing that's the cause of this, I'm sure there's something out there that can bridge me until I find another clinical trial.

Looking forward to a new day tomorrow :)

Sunday, November 28, 2010

Under the Weather...

Ever since Thanksgiving, I've been struggling a bit. I either have the flu or a chest/head cold that I can't seem to shake. I thought it was on it's way out today but here I am in bed typing this and my head feels woozy and I'm totally stuffed up, ugh. Hoping this starts resolving by tomorrow...

I'm hoping it's just the weather changing here (it was pretty cold this weekend). My place is pretty drafty too, even Chili has been jumping up on the bed lately at night probably because it's colder down on the floor!

This is a weird time of the year too with how it gets dark so early, I think I miss the summer already!

It just struck me as I search for something else to say here that my life has gotten kinda dull and predictable lately... I think I need to start a new hobby or something, I feel like I've been thinking about the cancer a little too much lately. Distractions (especially good ones) are always helpful in this regard.

We'll see what I can figure out this week.

I've ordered copies of my latest PET scan to be sent to Karmanos so that the radiologist there can take a look and consult with Dr. Ramchandran to make sure I'm getting the full story from NYU. I think it's in my best interest to get an opinion on the latest bit of growth from someone who doesn't have a stake in the clinical trial. I don't know if it's the body aches from the bug I have but my back was really sore yesterday. I've also been having a really difficult time with my hands locking up the last couple of days. I have no idea if any of this is related but like to write it down so I can go back if I have to.

I think the warm weather of Florida is really calling my name right now... I'm supposed to go back down for a short trip December 13th. Looking forward to it. Until then, I have my scheduled trip to New York on December 8th. Not really looking forward to that one for some reason.

Time to hopefully get some good sleep and let me body fight off whatever it is that's wreaking havoc on my head right now.

Goodnight :)

Thursday, November 25, 2010


Just had a nice evening at my Mom's with the family to celebrate Thanksgiving :)
The food was awesome as always and everyone was in a good mood. Unfortunately, I couldn't stay as long as I wanted because I was so tired! I had one glass of wine and it wiped me out (plus the turkey probably had a little bit to do with it, ha ;) No matter, it was great to catch up with my cousins, aunts and uncles and family on Rich's side, plus my sisters boyfriend, Carl.

I was asked to say grace at dinner and I wasn't really prepared to do it! I really can't remember what I said but was hoping to express how thankful I am to have family surrounding me (and friends and other family members who weren't there) who sincerely care for me. I also wanted to say how thankful I was for all of the good times that were had with members of family that are no longer with us. I also wanted to say how thankful I am for the awesome life we get to live as American citizens and for each precious breath that we take in this precious life...

Happy Thanksgiving!


Friday, November 19, 2010

Official Report is in...

So, I just opened and read the official dictation of my PET scan and it's pretty much what I expected it to be. 4 out of the 5 "targeted areas" or lesions have increased in size and metabolic activity. I only used to have 4 areas but it looks like the cervical node that popped up a few scans ago is here to stay. I guess I'm kinda numb to it right now as I'm pretty calm (thank God for Attivan). It is concerning any time the cancer is getting "bigger" though. Dr. O'Connor wasn't there and I saw Dr. Zain. She mentioned that disease tends to "wax and wane" on this drug so I'm hoping that it'll start waning again on this cycle or I may have to start thinking of other options. We didn't discuss when we're going to scan again but will find out when I go back on December 9th.

Another troubling thing on the report that I need to investigate is; "Evaluation of the visualized skeletal structures demonstrates slightly increased cortical erosion/remodeling at the paraspinal regions mentioned above (where most of my disease is). It sounds like my bone or spine is starting to erode, ugh...

The plan for now is to try and enjoy the weekend (I miss Chili and can't wait to pick her up from my Moms!). On Monday, it's back to business as I'm going to forward the report to Dr. Ramchandran here in Detroit and see what his take is on it. I also need to contact a specialist for my back to make sure the eroding spine thing is being handled. It sucks because I'm not approved yet for Medicaid and have to cover the 20% of of my medical bills that aren't covered by Medicare. I did receive a letter back from DHS though and hoping I can get the Medicaid pushed through quickly.

I've written in the past how dealing with cancer is a 24 hour a day 7 day a week job. With this kind of crap, it feels like I have to work overtime as ridiculous as that sounds...

My spirits are surprisingly pretty good right now though so I'm just gonna keep rolling along and enjoying life the best that I can as always.

I've got big plans!!

Thursday, November 18, 2010

Good News Bad News

So, just got up to my room finally after starting my day at 4:45 a.m. I flew in to NYC, got to NYU, had my PET scan and waited for the results. Dr. O'Connor wasn't in today so Dr. Zain came in and reported that they're going to keep me on the trial (good) but the targeted nodes that they have been watching have all increased slightly in size (bad). I don't have the official report in hand yet so I'm going to refrain from getting into too much detail. Bottom line is I'm a little dissapointed after such a positive visit last time and all the talk about a partial or even complete remission, ugh...

Anyway, I guess I'm used to this kind of news and shouldn't get too caught up in what might have been. I'm still feeling relatively well (although a little wounded mentally). It would just be so nice to hear the words remission for once...

Once I receive the report, I'll do another post and share the results along with my feelings on it. Right now I'm going to go meet some friends in Manhattan and try and have a fun evening.

I guess you can't always get what you want...

Sunday, November 14, 2010


Just laying here watching the game and was just reflecting back to the last time I was here in Florida. My mental and physical well being were in such a different state... I was just regaining the normal use of my hands and legs and was always exhausted. I remember simple things like walking across the parking lot to the pool or trying to get my keys out of my pocket and unlocking my door were a major challenge. I remember struggling to walk down to the beach, having to basically "fall" to the sand to sit and barely being able to get back up. I also remember trying to keep up with this blog even though I had to type with one finger because my hands were useless. I've come a long way since then, thank God!

Because of this, I'm in such a better place these days. Life is so much more enjoyable when you can physically suck the marrow out of it. I remember being on SGN-35 when the severe muscle aches started. Then came the slow then sudden onset of Guillain Barre Syndrome. I remember thinking of ways to live with all the discomfort and pain... I was devising ways of being able to "live in my head" if that makes any sense as I thought I would have to live like that until my days ran out. Honestly, now that I look back, I think I was pretty depressed.

While things are far from perfect physically, I am doing so much better these days. I just hope that this can last for a while... What would a reasonable amount of time be? I really can't say. Dare I dream that this would last another six months? How about a year? It's very difficult to not get too caught up in feeling relatively well knowing in the back of my mind that this treatment has an expiration date and I'll eventually have to roll the dice on another clinical trial. I need to start reading my Buddhism books again to remember to live in the moment!

I can say though that at this moment, life is pretty darn good. I'm going to try and thoroughly enjoy my last few days here while mentally preparing for my upcoming scan this Thursday in New York.

One day at a time ;)

My buddy Danny and his wife Celia. Danny's work finally made it into a gallery! He has a friend that opened Village Studio Gallery on Atlantic Ave. in Delray Beach and he's one of 4-5 featured artists. It's going to take some time for word of mouth to spread but now that it's in season here foot traffic will be increasing and hopefully they can sell some art... Here's the link to the gallery if you want to check out some of the artist's work.

Mike, one of the artists was doubling on the keys!

I've been dreaming of rolling up to the beach in a convertible for a long time and now it's reality! Pretty cool...

Traveling Jesus and I having lunch at my favorite spot!

Thursday, November 11, 2010

Made It!

Got an internet connection finally and just wanted to say I made down to Soflo in one piece! The Bimmer ran like a champ and it was a fun drive. The colors are still changing down in Tennesse and Northern Georgia, very nice :) As I gassed up in Florida for the last time, I decided to take the top down and do the final leg "topless", ha! I have to say, it was one of the most satisfying (almost spiritual) experiences I've ever had...

Also had a chance to visit my good friend Anastasia in St. Augustine who happens to be a Hodgkins survivor (sorry and thanks for the permission Anastasia ;) Happy to report that she's still in remission and has moved on with her life...

It's so nice to feel the sun on my face again, ah!

Life is good :)

For documentation purposes, wanted to note that my lower left shin is itching something fierce and the itch seems to be coming from under the skin, classic Hodgkins type itch, ugh. Going to keep my eye on it...

Monday, November 8, 2010

R.I.P. Mike :(

Just wanted to send my condolences to my friend Sharon who just lost her son Mike today to this f'ing disease. Mike was a hero of mine and I'm really sad to hear of his passing.

Here's a link to the Hodgkins Lymphoma board I'm a part of and a beautiful post by Mike's sister who also happens to be a Hodgkins survivor.

This is pretty tough news to deal with and with that said, I will appreciate life even more starting tomorrow as I head down to Florida with a heavy heart...


Sunday, November 7, 2010

Migrating South

Just wanted to check in after what seemed like a long Sunday (if only by an hour). I watched my Lions once again snatch defeat from the jaws of victory, ugh...

I'm getting excited though as I'm going to attempt to leave tomorrow for Florida! It all depends if I can get all my stuff done here in time and if not will be leaving on Tuesday. I've got the Bimmer running like a champ after getting the rear wheel bearing replaced. It's like night and day as it was really vibrating before. I've had a couple of different people look it over for me and have been given the thumbs up both times thankfully. Still, I'm a little nervous driving a car with 300,000 plus miles on it from Michigan to Florida. We'll see what happens!

Life has thankfully been pretty uneventful lately. I'm still feeling relatively well and even went for my first run (actually a really slow jog) in a long time earlier this week. It was only around the park across the street (probably a mile) but it felt great and I had decent wind. I want to start doing more of that to try and keep my lungs strong. I think I'll start riding the bike and swimming once I get down to Soflo if my body allows it. I can't wait to swim in the ocean again!

I wanted to send out some good vibes to my cousin Rodney who I just found out a couple days ago was diagnosed with what else, Hodgkins Lymphoma, ugh. My family has a history of cancer but two of us now having HL is pretty strange knowing how rare the disease is. I know things will be ok for him though and wishing a drama free treatment out there in Vancouver BC.

That's pretty much all I've got for now, I'll probably update from the road or once I get down to Florida.

Sunshine, here I come!

Monday, November 1, 2010

Checking In...

Just sitting here watching some of the coverage prior to tomorrow's election and wanted to catch up...

So, it looks like the Republicans are going to take control of the House and the Democrats will probably hang on to the senate although there's an outside chance that may flip as well. It's so crazy how quickly the political tides change. I'm still in shock that our country is poised to give control back to the party that steered the country into the recession. What's going to be different this time? I've been paying attention lately and I really haven't heard any novel ideas by the GOP. In fact, Mitch McConnel, (the now minority Republican Senate leader) said the #1 goal of the GOP for the next two years is making sure Obama doesn't get re-elected. That doesn't sound like responsible governing to me.

I guess with things still pretty bad out there with housing and the job market and only slowly getting better, someone has to take the blame and in this case it's the Democrats. I think the health care legislation was the nail in the coffin. It created a perception that Obama and the Democrats weren't interested in fixing the economy but a political feather in their cap with the new Health Care Bill. This combined with the fact that the Bill isn't very well conceived (and probably needs fixing) and you have a recipe for disaster for the party in power who passed the legislation.

My hope is that instead of more gridlock, perhaps for once the two parties can work together to continue to try and fix the economy and improve the shortfalls of the new Health Care Bill. Locally, I'm hopeful the guy I'm voting for governor, Republican Rick Snyder, is going to be the inclusive leader he promises and helps to get Michigan out of the dumps. I think Independents like myself (which comprise the majority of American voters) want our government leaders to work together and find common ground in the middle. As I think about it though, it probably will never happen. With as large as this country is and with so many different viewpoints (for example the lens which rural America looks through as opposed to an inner city view) there's always going to a clash of ideals. This really struck me when I was in Holland. It's fairly homogeneous there and the population is relatively small so people can find common ground much easier (and as result have a much more harmonious society than we do here).

Anyway, I have a ton more to say on the elections tomorrow but think I'll just let the results speak for themselves. I will be very interested to see what comes next...

In a somewhat related note, today is my official first day without having private health insurance as I've taken the forced lunge into Medicare. I have to go apply for Medicaid tomorrow so I can hopefully supplement the 20% of my medical costs that aren't covered my Medicare. I feel fortunate that I'm feeling relatively well as I couldn't imagine having to deal with this crap if I was feeling like shit.

There is light at the end of the tunnel however as I'm getting ready to drive down to SoFlo next week! I'm really nervous but I'm going to be attempting to drive my convertible (and the 300+K miles it has on it) down there. I'm taking it in tomorrow morning to have the rear wheel bearing replaced and hoping everything else is going to be solid enough to get me there. I've already had the timing belt replaced and have been told that the engine in the car I have (BMW E30 325i) can run for 1,000,000 miles!! I have a feeling there's going to be some interesting blog material made on that trip but of course hoping for a boring uneventful journey. I'm really looking forward to some warm sunshine again...

To unfortunately close on a sad note, it looks like my fellow Hodgkins Warrior Mike from St. Clair Shores is going to ride off into the sunset, hopefully peacefully. His mother Sharon sadly reported today on our forum that the family has decided to call in Hospice rather than deal with the inevitable ventilator. I guess his body has been through one too many treatments and the cancer is no longer responding to any of them. My heart and prayers go out to the family.

I also wanted to send some good vibes to my friend Kirsten out in Vancouver. She's really been struggling lately after finishing up 6 cycles of Bendamustine and doing a single treatment of Vinblastine which really threw her for a loop. I hope you're back on your feet soon Kirsten and rooting for you here in the D!

That's all I've got for now; thanks again to Marie, Jim and my Godmother Aunt Shelly and Uncle Butch for your generous gifts :) I am a very blessed...

Good night everyone and good luck :)