Don't panic...

Real quick, went to see Dr Ram yesterday. He inspected the lump under my arm and isn't so sure it's a lymph node. He sad because it's so close to thE surface of the skin, it could be a cyst, clogged sweat gland, or subcutaneous something or other. H didn't rule out progression of Hodgkins here as the disease does occasionally travel outside the lymph nodes (as with my para spinal disease) but did think this was unlikely.

So, the plan is to continue on this cycle of S@N and get scanned in a couple of weeks. New York is still on although it may be the last one if this stuff in my neck has gotten worse or the armpit lump is hot.

So, time to exhale and play a round of golf at a beautiful golf course here in Michigan called Pine Knob.

Thanks for the words if support :)

New Lump

I'm having a rough week... Was in the shower last night and found a pea size hard lump under my right armpit, not good. I've emailed Dr. Ram and hoping to get in to see him asap. Kinda hoping they want to remove it and biopsy it so I don't have to feel it and I have fresh tissue to send to other trial sites around the country as they usually require this. This is assuming it's progression of my disease. I can't imagine what else it would be being directly in my axillary area of lymph nodes under my arm. I had 3 removed here before on my last biopsy and it caused lymphodema so that would be my only concern (besides Hodgkins of course).

I'm trying to stay calm but it's really tough. No matter how many times you discover something isn't working and the disease is progressing it always freaks you out. Just hoping I can get into the RAD001 trial here as it had a 53% response rate in Phase 1. Yeah, flipping the coin at this point is about as good as I can get. So, it looks like New York may be done, I think I've done pretty much everything I wanted to do there except see a show and do the museums. That's touristy stuff anyway right?! I had a chance to experience the real New York with people who actually live there and don't think you can beat that.

So, I take a deep breath, a Clonazepam and hope for the best.

By the way, my prayers and good thoughts go out to my Auntie Linda who's mother passed (from what else, cancer). She was a very sweet Lady and know her family will miss her. See you guys at the funeral tomorrow.

Chris

Update from New York...

So, I'm in my room now relaxing after a nice carryout meal from this place up the street. I went in today to see Dr. O'Connors assitant Shannon and I'll be continuing on for another cycle of S@N. We never really talked about the potential new activity in my neck as we pretty much beat a dead horse on the subject over the phone earlier in the week. The plan is to do this cycle and I'm scheduled to be scanned again when I come back in three weeks. If the suspicious nodes are larger or there are more areas with uptake, it's a no brainer, I'm off the trial and on to something else. If the areas are still the same size or the SUV levels are lower plus the other areas in my back are stable or better, I'll stay on the trial.

I also got the results back from the MRI in Detroit and it doesn't sound good. There is still "Lymphomatous osseous infiltration" in my T-9 through T-11 vertebrae. There's also soft tissue that's next to my spine that's cancerous and probably the source of my pain on the right side of my back. The MRI also showed that I have "multilevel degenerative changes thoracic spondylosis with central disc protrusion seen at multiple levels". I haven't researched what this means but it doesn't sound good. Shannon mentioned that I need to speak to an Orthopedic doctor to see what can be done to help or correct the problem. She mentioned that surgery is an option although probably not a very good option as I'd be laid up for a while. She also mentioned that I might be able to get local steroid injections to reduce the inflammation. I need to make an appt. in Detroit with a specialist to follow up on this.

This stuff is all pretty scary and surreal. Like I've said before, the cancer is enough to worry about but you throw in stuff like this and it kinda makes you numb. It's tough to keep a positive attitude but I manage pretty well I think. It's weird though as I often feel disconnected from the rest of the world although I think I've gotten used to it. Cancer and it's effects can make you feel pretty lonely at times. It's so strange to walk around, look at everyone and try and remember what it felt like to be carefree regarding my health. It's a burden that is with you 24/7and sometimes you feel like you're losing it (which is probably normal I think) but typically doesn't last too long. I really cherish the rare times that I can "forget". There was an instance of this last week when I had a chance to play one of my favorite golf courses in Metro Detroit called Greystone. I usually like to play with friends or join other groups as a single player. This time however I had the whole course to myself! There was an outing that just finished up and they let me go out on my own with no one in front of me. I've never had a more peaceful round with it being so quiet and not having to wait for anything except driving up to my next shot. I played 18 holes in 3 hourse which is unbelievable. I shot an 87 which isn't too bad for me and I felt great!


16th Hole at Greystone. Stuck it 12' from the pin but missed the put :(

Went out with a couple buddies here last night, Dennis and Ray. Ray bartends at this really good Vietnemese restaurant in Chelsea called Omai and hooked us up on the food and drinks. They took me to a couple of places after with outside patios, one in the Meat Packing district I think. It was a beautiful night and the Hudson River was in full view from the patio. It didn't feel like a Tuesday night but it's Manhattan and every day is like a weekend here!

I leave tomorrow afternoon back to the D. I'm looking forward to continuing to work on the Bimmer. I ordered a new back window for the convertible top and it arrived right before I left. I guess I've got to sew it in and glue it. Should be fun ;). I've already replaced the windshield which was tedious and my hands were locking up like crazy. I've replaced the seats and got a new muffler put on last week. It's looking and sounding a lot better :) Just need to get the tunes going and maybe some new tires and it's good to go.


Bimmer minus the seats ;)


Took Chili for a drive up Woodward to Long Lake Rd. ending up at Orchard Lake for the sunset. What a blast to tool around in this thing!

Well, its time to crash. I'm shot...

Settled In....

I planted an apple tree in my backyard when I first bought the place and it seems the squirrels in the neighborhood are fattening up for the winter from it's fruit!

Well, I think I'm finally settled into my house. I added the final pieces today finding a dining table and chairs at the Salvation Army to go along with my other stuff I've collected over the years and have been keeping at my Mom's place. It's really nice to be back in my old crib! It's really nice to have Chili back too and I think she likes it here. We went across the street to this huge park, took her off the leash and she was running around like crazy :D Everything is pretty much the same around here except my neighborhood seems to have gotten younger. When I first bought the place, there were quite a few elderly people on the street. Now it seems like they've been replaced by mostly gen x folks like myself and maybe even some of the gen y crowd.


Chili seems pretty comfortable in my new (old) digs in Fashionable Ferndale.


I picked up the the kitchen table and chairs at the resale shop today. I bought this house 12-13 years ago and with a lot of work and help (mostly from my stepfather Rich) completely gutted and remodeled it from the inside out. Something to be proud of I guess...


My buddy Rob and I built the maple kitchen cabinet doors down in his basement in Dearborn. The counter top on the right I built over my washer and dryer (the cabinet lifts up and they're underneath) as there's no basement in the house.

Now that I've gotten most of my projects taken care of like changing faucets, toilet seats etc. I can concentrate on enjoying some golf and getting to work on my Bimmer. I found some nice replacement leather Recaro seats at this guys shop down in the hood. I wanted to take some pictures of this street where this guy has his shop but unfortunately I forgot my camera. If you looked at one picture of this street and another picture taken from a street in war torn Iraq or Afghanistan you wouldn't be able to tell the difference. There are piles of broken concrete where there used to be a house, another completely burned down house with just the shell left and vacant lots overrun with tall weeds and wild trees. There was one house however that was still standing and there were actually people living there, actually quite a few people the last time I went (I've been over there twice). It was funny, the day I went to pick up the seats, the people that lived at the house had a homemade karoake machine setup on their front lawn except instead of singing songs, they had a beat in the background and were making up their own raps. It was like 2 in the afternoon on a Friday and everyone was drinking 40's and cutting loose. I asked the guy that owns the shop (Louie) if he ever has any trouble and he said (to my suprise) "never". He's been collecting old BMW parts at this shop for 23 years... He also has this big ass Rottweiler that lives outside where all the old cars are parked and think he may have something to do with nobody messing with the place.

As far as that hindrance I deal with called Hodgkins Disease or Lymphoma, I wanted to document something I noticed a few days ago and slightly concerned about. I took another look at my last PET scan and noticed a section that didn't get discussed at my last visit to New York. According to the Radiologists report, there is a new area of activity in my neck that is less than a centimeter but registered an SUV (radioactive sugar uptake) of 7.2 which in my experience is significant. I took a look at my last scan and it mentioned the spot as well but made no mention of uptake except that it may be suspicious. So, I called Dr. O'Connors office and spoke to Ellen (one of his assistants). I asked her why they didn't bring up the node the last time I was in and she said because of it's size (less than one cm). My question to her is why wouldn't you tell me about this, especially when the SUV level has gone up since my last scan?
She said that they don't consider the lymph node to be necessarily cancerous if it's under 1cm. "It could be a number of things including infection". I don't really know what to believe to be honest. Does this Dr. want me to stay on his trial just so he can have better data #S on his trial (for length or duration of response)? Or, is it nothing to be concerned with and possibly an infection like Ellen said. I think this warrants a little research on my part and plan to talk to my other doctor asap. The last thing I want to do is stay on this drug too long, have my disease progress and possibly miss out on a new trial that has an opening here in Detroit, RAD001. So I go on Wednesday for an MRI on my spine and plan to speak to Oncologist here at Karmanos to see what he thinks.

This stuff is never easy, ugh...

Quick Update

It's been a week since I've written anything, time is flying by! I've been pretty busy getting my house together in Ferndale. It's pretty weird living here again as it's been well over 10 years since I stayed in my house! The day that I physically moved in was pretty memorable. The Bradford Pear tree that I planted shortly after I bought the house 12-13 years ago was damaged in a storm that rolled through here last week and 1/3 of it was on the ground in my front yard, bummer. My former tenant told me it came a couple of feet from crashing into the house, wow. So, I had to chop it up with a reciprocating saw and drag it out into the street. I'm hoping that the large gap that is left in the tree will fill in over the years...

After I got that taken care of, it's been little projects here and there that will probably take me a few months to complete as I'm in no hurry. One thing I needed to get done right away however was building a bed! I brought my memory foam pad up with me from Florida and had been laying on top of it on my floor up until tonight. I built a platform out of 2x4's and particle board that has me raised off the floor, so nice! I probably could've gone out and bought a bed but I only plan to be here a few months plus I like building things and using my hands (thus working on my strength). My forearm is pretty sore right now just from using a hammer, pretty pathetic. Oh well, it's pretty satisfying nonetheless unless this thing comes tumbling down, ha!

It really feels good being able to work on this house though... I actually cut my lawn today, the first time I've done that in a while. I've been living in apartments for the last 5+ years... There's something relaxing about mowing your lawn that's hard to explain (or understand for that matter with the annoying noise of the lawnmower and all). I think what it is for me is just being able to do this stuff again after only a few months ago not even being able to start my car as my hands were so weak. I feel a lot more useful these days...

As far as the medical stuff goes, I failed to mention in my last post that Dr. O'Connor wants me to get an MRI of my thoracic/lumbar to see if the lymphoma is in my spine. I know this sounds a little scary but we need to find out why I'm having this pain in my back. I know I have 4 infected nodes near my spine but they can't tell I guess if it's in my spine without an MRI. If you ask me, this is way overdue but better late than never I guess. So, I go next Thursday. Prior to my MRI appointment, I'm due to meet with my Neurologist to try and determine why I'm having these spasms in my hands and legs lately. It's really uncomfortable, painful and scary when I'm using my hands or stretching my legs or twisting a certain way and that particular part of my body will suddenly lock up. It mostly happens with my hands but sometimes get it in my legs when stretching or my stomach when I have to use my abdominal muscles. I have a feeling it's the residual effects from the Guillain Barre but hoping Dr. Ramchandran can treat it or mitigate it. It's always something right?

By the way, just wanted to send out some prayers and good vibes to my refractory friends Michael and Bekah (you can now follow her blog "True Beauty Never Hurries" in my blog links) who are at or potentially at the end of the road for their perspective clinical trials due to disease progression or side effects. They now have to deal with the major stress and anxiety of what to do next. I wish both of you wisdom and guidance and know that the next choice will be the best one for you.

Anyway, that's my quick update for now, looking forward to a nice weekend on the West side of the state which hopefully includes some golfing and fishing :-)

Cheers!

Stable!!!

Just got back to the Hope Lodge much lighter on my feet with a huge gorilla off my back. According to the scan, my disease is stable, woooo hoooo! I still have 4 "hot spots" near my spine that really haven't changed in size (except for millimeters) since April. I will surely take it after the freakout session I had the other night.

The thing we're going to work on is pain management. I was prescribed some long acting pain meds that I'm supposed to take 2x per day (one in morning and one at bedtime). I also now have some instant relief meds for breakthrough pain. Dr. O said it's all about staying ahead of the pain and keeping a level of drug in my system that will control the pain. Do I like having to depend on pain meds, not necessarily... That said, at this stage of the game what do I care? As long as I don't have to endure this back pain and can sleep I'm ok with it.

So, it's been a long mentally draining day of blood tests, laying in a tube with my arms above my head for 45 minutes and an excruciating wait of 2 hours to find out the results. Needless to say, I'm exhausted. Time to lay down for a sweet nap and hopefully hit the town tonight with some friends here in Manhattan (I guess there's a birthday party or something).

Thanks for all the good vibes/prayers.

Six weeks I get to go through all of this again, ha!

Borrowing from a friend

I just visited a friends' blog and wanted to share an entry she decided to repost from last spring. I don't want to mention her name as she prefers to keep her blog private (hope you don't mind my friend :) There's no way I could do a better job of expressing what it's like to live with refractory cancer... So, please enjoy this beautiful entry from a special person.

How do you live with chronic cancer?

Between treatment last week, the move, and other odds and ends its been a bit of an emotional week. Sometimes, I just need reminders that we're all doing the best we can do (this includes me.). I wrote this post last spring, and sometimes rereading it, helps remind me of that...
-----Throughout the last few months, I have been thinking, carefully. About this topic. About the beautiful, kind-hearted , soulful individuals who fall into this unforunate category.

Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?

And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.

And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.

But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.

I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.

-

A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.

I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.

I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.

I experience pain.
therefore, I experience, beauty.

Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.

In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.

-
Today, I hope you take the time, to hug the ones you love.