Well, Happy Holidays belatedly to you :) It was a weird one this year for me, hard to explain. I did the drive up from Florida on the 22nd and bam, Christmas was on. My Aunt Shelly and Uncle Butch put on a nice dinner and it was good to hang around the family for a bit on Christmas eve. My Moms was nice too on Christmas day. I kinda felt like a zombie on both days though... I recently switched up taking my pills from the evening to the morning and have been exhausted during the day lately. I wanted to try something different as before, when I took them at night, it was almost impossible for me to get up before 11-12 in the afternoon. I started getting a little freaked when the days started getting so short, I was only seeing daylight for 4-5 hours, not cool. So, the switching to the morning has resulted now in me being able to wake up earlier but being really tired during the day. So the new experiment is one in the morning and one at night. We'll see how it plays out.
As for my Mom, I got a bad phone call from her today. Apparently her doctor and her team dragged their feet in getting her tested for HER2 and when they did, they had a screw up on the spelling of her name or something idiotic... The end result is she didn't get an additional drug today (Herceptin) with her conventional chemo (4th infusion) that dramatically increases the efficacy of her treatment. This means apparently that she's going to have to get an additional 4 treatments. This is hard to believe and I'm at a loss as to what to say. Such an incredible appalling mistake. Why there's not a check and balance system there I have no clue. Good Lord. You can't buy back that time but the hope is that the Herceptin has great effect and all of this is just a bad memory.
Good time to change the subject I think...
Even though it's really cold here in Michigan, I had a pretty nice experience tonight at the park behind me where I let Chili fly around without her leash. We went out tonight for the first time in a while as the park got flooded with the warmer temperatures the last few days. Tonight was below freezing (30 degrees F) and the ground and the water froze. It was pretty neat walking on the frozen ground, kinda like a hard sponge and with the lights around the park, the frost on the ground was literally sparkling, quite beautiful.
I had a scary experience earlier today however... I think Chili has been getting a little cabin fever. I let her out earlier today but forgot to lock my gate and found later that she decided to take a stroll down the street on her own which she never does. It's always her standing at the front porch barking letting me know I left the gate open, no big deal. Today she scared me though because like I said, she never runs away and it was pretty damn cold out. My mind of course went to all of the worst scenarios and I was a little freaked. I had to run out and yell for her 8-10 times before she came running out of someones yard down the street. I need to make sure to lock the gate for now on, can't afford any more drama!
So, in the spirit of relaxing, I plan to do a good amount of it along with some early new years resolutions like going back to yoga (bought a $25 groupon for 25 sessions, not too shabby ;) I've also just changed the strings on my guitar to these nice Elixirs which were a Christmas present. Those things are buttery! Anyway, I'm thinking of taking a few lessons to try and learn some new skills. I've been stagnant in my playing for so long now... I want to learn how to play some slide or some bluegrass or something fun. I've got lots of other things I want to get into but going to wait to see how this fatigue thing plays out so as to know how much I can take on in addition to working on these two houses and my other projects.
I've also got to work on trying to put on some weight! Funny, most people are trying to lose weight after the holidays. It was a little scary getting on the scale yesterday and weighing under 16lbs. I won't say how much under except I need to get busy eating, don't like being this light. I feel fairly strong but don't like the way I look and how cold I get. I wish I had the cash for a personal chef, that'd be sweet! So, I've got to start forcing myself to eat more (I skipped a few meals down in Florida working my butt off on my place). I've also been dealing with these mouth sores which makes it pretty painful to eat. I think I also have to start eating some things I've been avoiding lately, trying to adhere to an anti inflammatory diet. Once I get back up to closer to 170, I can get on the healthy diet again and just work to maintain it.
I guess one of the advantages of having cancer is that I never have to worry about getting fat, haha ;)
So, I think I'm going to check out here, just realized it's almost 3:00 in the morning, yikes. I took a long nap today, thus the long night I guess.
Starting to look forward to the new year and with it all of the great things that will hopefully happen in 2012.
Cheers!
Chris
BTW, RIP Mike Reed, I'm happy for you now that you're in a better place :)
Wednesday, December 28, 2011
Thursday, December 22, 2011
Sad news...
I just read that one of my heroes passed away tonight, Mike Reed. I really don't know what to say right now except that my heart goes out to April his wife and their beautiful child.
This sucks...
This sucks...
Tuesday, December 13, 2011
Re Connected
Just a quick update... Been down in rainy but warm Florida and finally got hooked up with internet access and cable today. It was starting to get weird in here with nothing but my phone and Chili to entertain me! Been keeping busy working around the place and actually started painting tonight. I like this place so much better than the other, I think the fire was actually a blessing!
The Bucky Dent Baseball School is right behind where I live, Chili was bugging me to sign her up ;)
She said she wants to pitch!
Couldn't resist, I told you I was bored!
So, my Mom has started her treatment and is handling it ok so far except for some GI issues. I'm worried about my sister though as I guess she had a grand mal seizure yesterday that really shook everyone. I don't know if any of you have ever experienced someone having a really bad seizure but it's one of the scarier things you'll ever witness. My sister is really brave to have dealt with these awful things for so many years, I wish there was a way she could prevent them from happening... She's tried every drug out there and has gone through so many tests... There's got to be something out there for her, ugh...
I'm really hoping I can get this place together fast so I can have everyone down for a visit and some sunshine this winter. It's hard enough to get through one (Michigan winter) but you throw in all the crap my Mom, Rich and my sister are dealing with and I think they could use some R and R down here in South Florida :)
Hopefully the weather improves here in the next few days. It's been nice and warm but mostly been cloudy and rainy. I don't feel as bad sleeping a lot after doing the work (it wears me out still) not to mention being inside in general. With this drug I'm taking (RAD001) I don't feel as compelled to be in the sun as the skin on my face has been doing some strange things. I get these major boils on my neck and crazy blemishes on my face. I've also been dealing with these weird puffy patches of skin under my eyes with these little dots. I don't know, this drug is working to keep the disease away (at last check) but I wonder what other kind of havoc is it wreaking on my normal bodily functions...
I hope this blog hasn't become depressing to read by the way... I just realized that I haven't been very happy go lucky on here for quite a while. In fact, I think I've been in kind of a funk in general for a while. I think the my family's burdens are weighing on me and it's hard to go out and enjoy myself lately. I did get out this last Saturday and had a great time at a concert in West Boca, at the Sunset Cove Amphitheater. My Morning Jacket was the band and they were really good.
It was a full moon that night and it was shining just above the stage!
I think when the sun does decide to stay out a while here, and when we hopefully get some good news regarding my Mom's treatment working things are going to get better.
In the meantime, I have to remember that the meantime is the most important time and do my best to enjoy it! Not sure if you'll find that saying in any Buddhism books but you get my drift ;)
Thanks again for reading,
Chris
The Bucky Dent Baseball School is right behind where I live, Chili was bugging me to sign her up ;)
She said she wants to pitch!
Couldn't resist, I told you I was bored!
So, my Mom has started her treatment and is handling it ok so far except for some GI issues. I'm worried about my sister though as I guess she had a grand mal seizure yesterday that really shook everyone. I don't know if any of you have ever experienced someone having a really bad seizure but it's one of the scarier things you'll ever witness. My sister is really brave to have dealt with these awful things for so many years, I wish there was a way she could prevent them from happening... She's tried every drug out there and has gone through so many tests... There's got to be something out there for her, ugh...
I'm really hoping I can get this place together fast so I can have everyone down for a visit and some sunshine this winter. It's hard enough to get through one (Michigan winter) but you throw in all the crap my Mom, Rich and my sister are dealing with and I think they could use some R and R down here in South Florida :)
Hopefully the weather improves here in the next few days. It's been nice and warm but mostly been cloudy and rainy. I don't feel as bad sleeping a lot after doing the work (it wears me out still) not to mention being inside in general. With this drug I'm taking (RAD001) I don't feel as compelled to be in the sun as the skin on my face has been doing some strange things. I get these major boils on my neck and crazy blemishes on my face. I've also been dealing with these weird puffy patches of skin under my eyes with these little dots. I don't know, this drug is working to keep the disease away (at last check) but I wonder what other kind of havoc is it wreaking on my normal bodily functions...
I hope this blog hasn't become depressing to read by the way... I just realized that I haven't been very happy go lucky on here for quite a while. In fact, I think I've been in kind of a funk in general for a while. I think the my family's burdens are weighing on me and it's hard to go out and enjoy myself lately. I did get out this last Saturday and had a great time at a concert in West Boca, at the Sunset Cove Amphitheater. My Morning Jacket was the band and they were really good.
It was a full moon that night and it was shining just above the stage!
I think when the sun does decide to stay out a while here, and when we hopefully get some good news regarding my Mom's treatment working things are going to get better.
In the meantime, I have to remember that the meantime is the most important time and do my best to enjoy it! Not sure if you'll find that saying in any Buddhism books but you get my drift ;)
Thanks again for reading,
Chris
Sunday, December 4, 2011
Seasons...
I just got back from the Chris Cornell show at the Michigan Theater in Ann Arbor. It's been a while since I've seen a show that gave me goosebumps, the last being U2 late this summer... It was just him and 7 awesome sounding guitars, really something. I think this song is appropriate as it does seem the seasons keep rolling along, ho hum... Actually quite the opposite -- it is really nice to comment on how time is just rolling by, maybe even in a monotonous way which I never thought I'd be writing about since I was diagnosed now 4 years ago...
I was going through my closet the other day and came upon a plastic shopping bag with the following caption written in sharpie "Nov 17th, git er done!"... Inside the shopping bag is the hair that I decided to cut off myself before the chemo had a chance to take it from me. It was my way of telling the cancer who was in charge or something like that... For the moment, I had won a crucial battle even if it was only symbolic - I wasn't going to let the cancer control me even though little did I know that it sometimes would and still does to this day. When I mention battle (which by the way is the most appropriate way to describe dealing with cancer) I mean that sometimes you win and sometimes the cancer wins. On that day in West Seattle a little over four years ago, I managed to win that one small battle...
Today, the battle rages on of course. Both the cancer and I have been beaten bruised, both of us inflicting damage on each other and up to this point, I have to say I'm winning. Not just because I'm laying here writing this blog... Nope, it's the simple fact that I have the desire to write this blog. It's the fact that I can still go out and enjoy myself on a night like tonight and walk by people, speak to people and them having no idea what I've been through or still going through. To me, that's winning the battle.
Of course, I'm sure the cancer is getting ready for a counter assault and for that hopefully I'm ready. I need to call Baylor University tomorrow to find out what's going on with my genetically modified T-cells. The last I spoke to the trial coordinator, they were growing very slowly but growing nonetheless. For now though, I continue to roll with the RAD001 despite the chronic fatigue and this new side effect of mucositis (where did this come from?!). The good thing is it's not caused from the cancer but the weapon (RAD001) I'm using right now to keep the beast down. Not sure where all the battle talk etc. is coming from but it just seems natural to write about so I'm sticking to it! Funny, I used to write these entries and then go back to see if my thoughts are organized, etc. Now, I just tend to write whatever comes to mind and just put it out there. Maybe I'm just getting lazy... Maybe I just don't care how this looks or sounds as much as just putting a message out there.
Perhaps I'm writing this as I know my Mom is getting ready to start her regimen this week and I want to remind her she has it in her to do this (of course she does, she's done it before!). It was nice to get a phone call from her after she had a really painful procedure done (had a small organ removed with a needle, can't remember the name of it right now). Anyway, she told me that when she was getting it done, she was thinking of all the bone marrow biopsies I've had and how I was and am able to get through it and it helped her get through it. Pretty neat to inspire someone by the pain you've gone through, makes me feel better knowing that some good came out of it! (not to mention finding out every time my bone marrow is clean thank God...).
Well, that's pretty much all I've got for now. Been packing up and preparing the last couple days for another drive down to Florida. This time to drive my tools down there so I can continue my unofficial job of house fixer upper or something like that ;)
I almost forgot, that's my part time job. The full time job I'll continue to do whether I like it or not...
Cheers,
Chris
Wednesday, November 30, 2011
Time has flown...
Wow, just realized it's been two weeks since I've updated, don't know where the time has gone...
Thanksgiving was nice as always. I was so looking forward to the Lions game and they laid the biggest egg, actually put me to sleep! Woke up and the food was ready to go and my Mom put together another epic meal. She's something else, with all she's dealing with right now with her pending treatment, pretty remarkable... She has her second opinion on Friday and should have enough information to get going with treatment next week. They're concerned with a suspicious spot on her lung along with of course the breast cancer. Prayers and good vibes requested please...
As for me, still rolling along. Finally got my feet taken care of! Come to think of it, I now realize that's probably the reason I haven't updated... After getting back from Florida, I probably did one of the dumbest things I've done in a while, trying to fix my ingrown toenails by performing torture on myself, lol. My toes and feet ended up getting infected and it was one of the more painful things I've had to deal with. My dogs were so sensitive I had a hard time sleeping with my toes touching the covers or dinging them on the mattress. Not to mention, my feet swelling up like balloons and pounding with every heartbeat. I ended up going to the podiatrist and Dr. Grodman yanked out three daggers that were growing into my skin. He had to numb both big toes Novocaine or whatever it is they give you at the dentist. While he was slicing out my toenails, he mentioned that I'd never be able to go as far as he went, way too painful... I couldn't look, I was having flashbacks of trying to do it myself, I'm getting creeped out by even writing about this. Happy to say the worst is over and I'm pain free down there, thank God!
Laying here watching the coverage of the Republican candidates, trying to see what the choice will be like next November. Of the two front runners, neither seems to exhibit a whole lot of principle or character, two of the most important attributes I think a leader should have. This is without mentioning the Cain guy...
Excited to be going to see Chris Cornell from one of my favorite bands of the 90's, Soundgarden, this Sunday at the Michigan Theater in Ann Arbor. It'll be my first time seeing the theater too so should be a fun night.
Really glad we're gonna have hoops this year btw, I like sports but I'm definitely a basketball junkie...
Alright, that's all I've got for now. Sorry if I grossed anyone out by talking about my toenail problem ;) It's one of those things I just had to document, lol. Hoping to settle into this thing with my Mom and looking forward to some sunshine as I prepare to drive my tools down to Florida to start working on the new digs down there.
Life is good!
Thanksgiving was nice as always. I was so looking forward to the Lions game and they laid the biggest egg, actually put me to sleep! Woke up and the food was ready to go and my Mom put together another epic meal. She's something else, with all she's dealing with right now with her pending treatment, pretty remarkable... She has her second opinion on Friday and should have enough information to get going with treatment next week. They're concerned with a suspicious spot on her lung along with of course the breast cancer. Prayers and good vibes requested please...
As for me, still rolling along. Finally got my feet taken care of! Come to think of it, I now realize that's probably the reason I haven't updated... After getting back from Florida, I probably did one of the dumbest things I've done in a while, trying to fix my ingrown toenails by performing torture on myself, lol. My toes and feet ended up getting infected and it was one of the more painful things I've had to deal with. My dogs were so sensitive I had a hard time sleeping with my toes touching the covers or dinging them on the mattress. Not to mention, my feet swelling up like balloons and pounding with every heartbeat. I ended up going to the podiatrist and Dr. Grodman yanked out three daggers that were growing into my skin. He had to numb both big toes Novocaine or whatever it is they give you at the dentist. While he was slicing out my toenails, he mentioned that I'd never be able to go as far as he went, way too painful... I couldn't look, I was having flashbacks of trying to do it myself, I'm getting creeped out by even writing about this. Happy to say the worst is over and I'm pain free down there, thank God!
Laying here watching the coverage of the Republican candidates, trying to see what the choice will be like next November. Of the two front runners, neither seems to exhibit a whole lot of principle or character, two of the most important attributes I think a leader should have. This is without mentioning the Cain guy...
Excited to be going to see Chris Cornell from one of my favorite bands of the 90's, Soundgarden, this Sunday at the Michigan Theater in Ann Arbor. It'll be my first time seeing the theater too so should be a fun night.
Really glad we're gonna have hoops this year btw, I like sports but I'm definitely a basketball junkie...
Alright, that's all I've got for now. Sorry if I grossed anyone out by talking about my toenail problem ;) It's one of those things I just had to document, lol. Hoping to settle into this thing with my Mom and looking forward to some sunshine as I prepare to drive my tools down to Florida to start working on the new digs down there.
Life is good!
Thursday, November 17, 2011
Back in the D
So, I landed yesterday morning uneventfully :) Went straight to Karmanos and was a little dismayed by what my doctor had to say. Yes, Dr. Ramchandran managed to pee in my cornflakes if you will... He had supposedly been holding out having this conversation with me but for whatever reason yesterday Dr. Ram was Debbie Downer and advised me that I might want to check with the Doc's there about looking into an Allogenic Stem Cell transplant. He said he doesn't envision these clinical trials working for me much longer and mentioned I'm on a "hot streak" and isn't overly confident that these trials will keep working for me, mwah mwah mwah.... It was pretty sobering news (as if I don't live with that thought every day) and made me question for a while if I was doing the right thing and maybe I should look into a donor... The funk lasted until I went to bed last night but woke today feeling better. I know that my chance for a cure most likely has passed (at least for what's available in Tx today) and quickly have gone back to survival mode and the mindset of treating this as a chronic disease. It's just that I haven't ever been given a "timetable" and Dr. Ram told me yesterday that he can't see me getting more than a couple years out of the way I'm going. Who wants to be told that?! I think these oncologists get antsy and feel like they need to do something... His rationale is that I'm either in remission or very close and right now may be the best time to try and eradicate the disease for good. It's funny though that when I asked him what he would do if he were me he couldn't answer saying he had kids, etc...
All I know is that while a cure would be great, getting an allo transplant is by no means a sure bet. Cure rates for Hodgkins are less than 20% with an allo and the chance I develop graft versus host disease is around 50%. To me, those numbers just don't add up not to mention the year of hell I'd have to go through after getting blasted again (losing all my hair, fingernails, feeling like crap, etc.).
So, now that I got that off my chest, I'm just going to continue to live in the moment, enjoy my relatively good health (minus the back pain and once I can get a handle on this fatigue and these damn in grown toe nails!). I'm going to ride the RAD001 train as long as it'll take me and hopefully when it stops working, my little genetically modified killer T-cells which are growing down in Houston will be ready to go and I can jump on that with the hope that I can continue to kill cancer cells in a relatively non-toxic kind of way.
I feel pretty strong physically and mentally (minus the hiccup yesterday).
Speaking of hiccups, the path for my Mom's treatment has hit a snag. Due to some incompetence by her team, they failed to state on a PET scan script that she was diagnosed with cancer and Health Alliance Plan (HAP) denied the test. After some prodding by me and some digging by my Mom, she found this out and it's been a scramble ever since to try and get approval for the scan so she can be properly staged and prescribed the right Tx. My aunt Deb who works at St. John health system asked around about her disease though and was told that it is highly curable so that was nice to hear. I just hope she can get started asap (once we gather all the information) because I know from experience the waiting can be the hardest part (Tom Petty says it best!).
As for Rich, it's been decided by his team that they do not need to give chemo and it's watch and wait which is good :)
Anyway, time to get my ducks back in a row here in chilly Michigan and reconnect with the outside world. Watched the news last night and shocking all the major stuff going on right now. I can feel a current events post coming up as it's hard to keep all of my thoughts on whats going on here in the U.S. and around the world inside!
At least if I go there, you know I'm not thinking about cancer which to me is a good thing :)
Taking it day by day, hour by hour, minute by minute, breath by breath...
Chris
All I know is that while a cure would be great, getting an allo transplant is by no means a sure bet. Cure rates for Hodgkins are less than 20% with an allo and the chance I develop graft versus host disease is around 50%. To me, those numbers just don't add up not to mention the year of hell I'd have to go through after getting blasted again (losing all my hair, fingernails, feeling like crap, etc.).
So, now that I got that off my chest, I'm just going to continue to live in the moment, enjoy my relatively good health (minus the back pain and once I can get a handle on this fatigue and these damn in grown toe nails!). I'm going to ride the RAD001 train as long as it'll take me and hopefully when it stops working, my little genetically modified killer T-cells which are growing down in Houston will be ready to go and I can jump on that with the hope that I can continue to kill cancer cells in a relatively non-toxic kind of way.
I feel pretty strong physically and mentally (minus the hiccup yesterday).
Speaking of hiccups, the path for my Mom's treatment has hit a snag. Due to some incompetence by her team, they failed to state on a PET scan script that she was diagnosed with cancer and Health Alliance Plan (HAP) denied the test. After some prodding by me and some digging by my Mom, she found this out and it's been a scramble ever since to try and get approval for the scan so she can be properly staged and prescribed the right Tx. My aunt Deb who works at St. John health system asked around about her disease though and was told that it is highly curable so that was nice to hear. I just hope she can get started asap (once we gather all the information) because I know from experience the waiting can be the hardest part (Tom Petty says it best!).
As for Rich, it's been decided by his team that they do not need to give chemo and it's watch and wait which is good :)
Anyway, time to get my ducks back in a row here in chilly Michigan and reconnect with the outside world. Watched the news last night and shocking all the major stuff going on right now. I can feel a current events post coming up as it's hard to keep all of my thoughts on whats going on here in the U.S. and around the world inside!
At least if I go there, you know I'm not thinking about cancer which to me is a good thing :)
Taking it day by day, hour by hour, minute by minute, breath by breath...
Chris
Monday, November 14, 2011
Thanks to Panera Bread...
I can finally update! I've been at my new place in Delray and haven't had internet or cable, totally disconnected except for my phone. It was pretty weird at first but have gotten used to it and hope to get connected the next time I come down.
To summarize my trip, it's been awesome! After the snowstorm in Pennsylvania, it has been truly memorable and sad it's coming to an end.
I had a chance to catch up with friends all the way down the coast who I haven't seen in a while along with everyone down here. The weather has been mostly great and today had a chance to hang out by the pool (after finally getting a key!)
So, without going into too much detail re the trip due to little time here at the restaurant, I'll have one more day tomorrow then it's back to the D early Wednesday morning where I fly up, land and go directly to see Dr. Ramchandran. My headaches have thankfully mostly gone away and now I'm just dealing with massive fatigue which hopefully he can help me with. I've got a weird rash under my eyes and near my mouth too which needs to be addressed as well but it's only cosmetic and sure there's some kind of cream or something I can get for it.
As for my family, Rich found out he won't need chemo or radiation but got some sad news that he's no longer eligible to be on the heart transplant list. I guess the only option is to make sure the remaining functioning part of his current heart gets stronger somehow. They're supposed to attach a new lead to his pacemaker so hopefully that helps. As for my Mom, she is getting a PET scan today after having to wait (stupid insurance company HAP, what are they thinking?!). She goes in tomorrow to consult with an oncologist who has extensive experience in recurrent breast cancer and hope she can give her some good options.
That's really all I have time for now, thanks again for reading and keeping up with me and as always for the prayers and good thoughts.
Chris
To summarize my trip, it's been awesome! After the snowstorm in Pennsylvania, it has been truly memorable and sad it's coming to an end.
I had a chance to catch up with friends all the way down the coast who I haven't seen in a while along with everyone down here. The weather has been mostly great and today had a chance to hang out by the pool (after finally getting a key!)
So, without going into too much detail re the trip due to little time here at the restaurant, I'll have one more day tomorrow then it's back to the D early Wednesday morning where I fly up, land and go directly to see Dr. Ramchandran. My headaches have thankfully mostly gone away and now I'm just dealing with massive fatigue which hopefully he can help me with. I've got a weird rash under my eyes and near my mouth too which needs to be addressed as well but it's only cosmetic and sure there's some kind of cream or something I can get for it.
As for my family, Rich found out he won't need chemo or radiation but got some sad news that he's no longer eligible to be on the heart transplant list. I guess the only option is to make sure the remaining functioning part of his current heart gets stronger somehow. They're supposed to attach a new lead to his pacemaker so hopefully that helps. As for my Mom, she is getting a PET scan today after having to wait (stupid insurance company HAP, what are they thinking?!). She goes in tomorrow to consult with an oncologist who has extensive experience in recurrent breast cancer and hope she can give her some good options.
That's really all I have time for now, thanks again for reading and keeping up with me and as always for the prayers and good thoughts.
Chris
Thursday, November 3, 2011
Great News! (relatively speaking)
Just got a text from my Mom telling me that her pathology report came back negative for Lung Cancer!!!!! It's not all good news though as she still does have cancer as it's a recurrence of her breast cancer from 20 years ago that has metastasized. While the best news would be no cancer, at least the prognosis is much better (according to her thoracic surgeon).
So, while her and Rich are by no means "out of the woods", it looks as though they have a much better chance than we thought :)
Thanks for the good vibes and prayers.
Cautiously optimistic,
Chris :)
So, while her and Rich are by no means "out of the woods", it looks as though they have a much better chance than we thought :)
Thanks for the good vibes and prayers.
Cautiously optimistic,
Chris :)
Tuesday, November 1, 2011
Halloween 2011, pretty memorable!
Creepy costume shot on my way down to parade NYC 2011
So, I decided to go forward with my planned trip to New York and subsequent drive down the East Coast on my way to Florida. I was a little worried the trip might not have been the best idea in the beginning. I stayed up really late last Friday trying to get everything together so I could leave the next morning and be in New York at a reasonable time to go out with some friends. About halfway into the drive, I had serious doubts if this was going to happen. The mountains in Pennsylvania were really nice then all of the sudden, all hell broke loose. It started snowing a little at first then went into a full blown blizzard, trees were fallen over the highway, trucks and cars were sliding into ditches and then I started to slide around and decided it wasn't worth risking my life to get to New York on Saturday night. I bit the bullet gladly and found a Best Western in the middle of BFE Pennsylvania and have to say it was probably the smartest $100 I've ever spent. My little convertible is obviously not made for snow driving and not even sure if it's ever seen cold weather. So, not only was it sliding but the engine was bogging, couldn't see out of the windshield with no defroster, it was pretty scary...
At first, the snow was nice :)
Never a good thing when you're driving on the highway only to be staring at headlights facing you! I was going pretty slow though hence my chance to take the shot. This accident was my wakeup call to get off the road...
Getting to the hotel and being able to exhale was awesome! I was so exhausted, I think I passed out around 9:30-10 which never happens... It was nice waking up the next morning with the sun out, burning the snow off the road, and being able to drive on dry pavement. The rest of the drive then went pretty smoothly and it was pretty surreal coming out of the mountains of PA and New Jersey, seeing the city skyline and all of the sudden being back in the concrete jungle. I took the Holland Tunnel to New York and was shocked that it was $12 bucks. I think they raised the price because of the condition of the entry of the tunnel. It looks to be falling apart pretty bad, can't imagine how much it's going to cost to ever fix that thing up...
Once in New York, I was able to meet my friends and we went to a sports bar to watch the Lions kick some major ass. Can't remember the last time I was proud to root for the Lions in a different city, pretty cool!
The next day was Halloween and we decided to hit the parade. I actually took the train down to Houston St. and was going to meet my friends for dinner and purposely didn't eat because it was pizza and pasta and you need a lot of room to eat all those carbs. Little did I know that once I got out of the subway and onto the street how many people were going to be out and I almost didn't make it to the restaurant. They had the streets blocked off with barriers and weren't letting anyone cross 6th ave, ugh. So, if you can imagine the mouse in the maze trying to find the cheese, that was me ;) I went up and down side streets only to be turned away everytime trying to cross over. Finally, I looked up the street and noticed hoards of people crossing 6th and I ran as fast as I could to try and get across. I finally ended up in the middle of a mass of people who were watching the parade and realized I had to get into the "crossing fenced lane" and had to run all the way back and re-enter if that makes any sense. I finally did get across and it was such a major relief, I felt like I had won again, one guy against thousands of people in a city I'm not overly familiar with... that pizza tasted great! ;)
Contained craziness in the village
Creepy skeletons at the parade
The next day I went down to my little park and took this shot of the finally finished skyscraper that they were working on everyday last year which is located next door to the Hope Lodge bldg. So much quieter here :)
I wanted to wind this up by mentioning that while all of this is fun, exciting and adventurous, I do it with a heavy heart knowing that my family is going through some hard times right now and a fellow Hodge Warrior Mike Reed is struggling pretty bad in his fight. Please take a minute to check out his Caring Bridge site which you can find a link under my blogs lists and leave an encouraging message if you can. It's been one thing after another for the guy and my heart goes out to him and his family. Also, looking forward to digging into the trenches with my Mom when I get back to confront her beast and give it hell. I've got names of 5 doctors now who have been recommended to me from other doctors so we'll have some good options. Even though I'm out here, my heart is in Michigan with my family and always in my thoughts. Love you guys!
Chris
Thursday, October 27, 2011
Rich Update
Well, it was a long day for the family today but I'm happy to report Rich survived his surgery and they were able to remove the mass from his lung as well as some suspicious surrounding lung tissue. They also removed some lymph nodes and will be testing those to find out if they need to follow up with chemotherapy. The hope is that they won't have to because of the condition of his heart and the CHF. I think he has a few more days at UofM then he can hopefully go home. Ann Arbor is nice (especially right now with the colors changing) but as Dorothy said, there's no place like home...
As for my Mom, I think it's been a good distraction for her regarding her upcoming battle. Behind the scenes, I've been doing a good amount of research, getting names of doctors here in Michigan as well as researching some of the novel trials for small cell lung cancer. There are a couple of targeted therapies out there as well as the new class of drugs that actually starve the tumor, essentially cutting off it's food supply by preventing the necessary network of blood vessels that tumor cells need to survive and proliferate.
Don't get me wrong, this is going to be a tough fight. I think we have the best chance going at it agressively as possible right away. We'll know more after the PET scan and the pathology report results but don't think there's anything wrong with arming us with as much information as possible. Lung cancer is the number one killing cancer in the world I believe, you'd have to think there's got to be more experimental treatments out there. If there are, I will find them and my Mom will somehow have access to them. She and Rich are going to be with us for a long time if I can help it.
I welcome any input if you or any of your friends have any experience with this.
Thanks for reading once again :)
Chris
As for my Mom, I think it's been a good distraction for her regarding her upcoming battle. Behind the scenes, I've been doing a good amount of research, getting names of doctors here in Michigan as well as researching some of the novel trials for small cell lung cancer. There are a couple of targeted therapies out there as well as the new class of drugs that actually starve the tumor, essentially cutting off it's food supply by preventing the necessary network of blood vessels that tumor cells need to survive and proliferate.
Don't get me wrong, this is going to be a tough fight. I think we have the best chance going at it agressively as possible right away. We'll know more after the PET scan and the pathology report results but don't think there's anything wrong with arming us with as much information as possible. Lung cancer is the number one killing cancer in the world I believe, you'd have to think there's got to be more experimental treatments out there. If there are, I will find them and my Mom will somehow have access to them. She and Rich are going to be with us for a long time if I can help it.
I welcome any input if you or any of your friends have any experience with this.
Thanks for reading once again :)
Chris
Friday, October 21, 2011
Struggling
It's been a tough 36 hours. Just found out that my Mom most likely has lung cancer along with Rich, double whammy if you will. A positive about Rich's is that it's just an isolated spot that can be removed (God willing he gets through the surgery with his CHF) and hopefully the beast stays away. As for my Mom, unfortunately it looks like it's metastasized to her lymph nodes which isn't unusual to happen quickly. The doctor mentioned there is reasona for optimism which was good to hear. We will find out exactly what type it is when she has a biopsy hopefully next week. Rich's surgery is on the 27th at U of M and I know everything is going to go well. As for my Mom, she has already beaten breast cancer so I think she's chemosensitive not to mention she is a f'n warrior along with Rich. How often have you heard of a married couple having to go through lung cancer at the same time? I don't know why all of this is happening nor do I understand why my sister had to go through it with her brain cancer and I have to deal with my crap but it's life and you have to roll with it I guess. This is just another bump in the road (as if we need any more) and I know there's a purpose to it and we will all be stronger and closer because of it.
It's hard for me to think of any of my stuff anymore and I guess in some demented way it's a blessing and a curse if that makes any sense. Now I know how people who care about me felt when they found out I was sick. I'm comforted to know that while it was bad (and still is), you quickly adjust because you have no choice. You learn to accept the treatment and not feeling so great because you have to. One thing that gives me hope about my Mom and Rich is that they laugh a lot and don't take life too seriously. My mom and I were talking about this yesterday at the hospital and I've read books on it. It is great supplemental therapy! Also, because we have a split family, there's twice the support which is awesome!
I am going to stay positive about all of this because like I said, there has to be a purpose...
It's back to basics, one breath at a time.
Thanks for the support in advance,
Chris
It's hard for me to think of any of my stuff anymore and I guess in some demented way it's a blessing and a curse if that makes any sense. Now I know how people who care about me felt when they found out I was sick. I'm comforted to know that while it was bad (and still is), you quickly adjust because you have no choice. You learn to accept the treatment and not feeling so great because you have to. One thing that gives me hope about my Mom and Rich is that they laugh a lot and don't take life too seriously. My mom and I were talking about this yesterday at the hospital and I've read books on it. It is great supplemental therapy! Also, because we have a split family, there's twice the support which is awesome!
I am going to stay positive about all of this because like I said, there has to be a purpose...
It's back to basics, one breath at a time.
Thanks for the support in advance,
Chris
Monday, October 17, 2011
Random Thoughts
I don't really have any updates but just felt like writing a little to help me sleep... I still battle insomnia and know this to be a way to help me doze off into dreamland so here goes.
Where to begin though? I guess maybe I should start by saying that I'm still doing relatively well (for someone in my shoes) but it's a constant struggle. I probably have written about this before but I've just learned to accept all the little nagging things (some not so little) as I deal with the developing long term affects of my body taking such a pounding after going through all the toxic therapy. My back problems are well documented and I'm just recovering from a "pop" that occurred a couple weeks ago as I was moving stuff around in my garage. It pretty much put me down for 7-10 days and I couldn't do much of anything. It's much better now and have been testing it doing more stuff to the house and going to the Home Depot today grabbing some drywall and lumber (tip, don't try to load drywall on top of your car on a windy day!). Hopefully I can get out of bed tomorrow!
Another once small issue (in terms of size and pain) has developed into a full blown major issue (although still small in size) and that's my two big toes! Unbelievably, the inside bottom portion of the nail on both toes has become infected and making it almost impossible to wear shoes these days for more than a couple of hours. Crazy how something so small can be so painful! It's slowly been developing as the temps here in Michigan drop and I'm no longer able to wear flip flops like I've mostly been wearing the last couple of years. I have wide feet and now know that I have to be really conscious of the shoes I wear. Gone are the days where I can wear my Chuck Taylors or any shoe for that matter with a narrow toe. Ever since I dealt with the Guillaine Barre Syndrome from SGN-35, my feet have been messed up and often get swolllen if I'm on my feet for very long. I don't realize that they're swollen when I have my shoes on and the result is my toes being crammed in there and each step forcing the skin over the nail (at least that's my theory ;). Anyway, I'm now trying to figure out how to deal with these ingrown toenails and can tell you it's no picnic.
I've also been dealing with some more frequent headaches that I haven't had since chemo. The culprit while on chemo was not drinking enough water and I think the same holds true today (but don't remember having to drink so much to keep the headaches away). I think I'm writing this to document in addition to bitching and moaning to make myself feel better, haha. Anyway, something to keep my eye on after a couple of scares from the doc's in how Hodgkins can sometimes go into the brain albeit rare.
On a positive note, I think I'm going to do another sweet road trip here in a couple of weeks, this time on the East Coast. I've been invited to New York for Halloween and the crazy parade they have every year. So, the plan is to drive to New York, check out all the "freaks and icons" (actually borrowed that from an album title by Dzihan and Kamien which is a must have for your electronic/house/ambient collection), then drive south down the coast and eventually ending up in Delray Beach to leave my little car for the rest of the winter. I still have to work out the details or can perhaps just let the trip unfold on it's own as I connect with friends en route or am pulled by certain sites that I haven't experienced. I'm kinda leaning towards just going with the flow with a loose outline of things I want to see. Interesting to find out how it unfolds...
I think I'm ready for an adventure, it's been a while since I've done anything like this so I'm looking forward to it. Plus, I think the colors will still be changing as I head south so that should make for some nice driving. Hoping my 23 year old car with almost a half million miles on it continues to run like a champ. I recently had the brakes fixed along with major work earlier this summer to the transmission and other stuff so it should hopefully be ok. I should be extra careful documenting this trip, maybe BMW will be interested in my story, just saying... ;)
That's about all I've got in me for now. My spirits are mainly good except when I think about what my Mom and Rich are going through right now along with my Sister. Rich has his surgery now scheduled to remove a cancerous spot on his lung (despite his CHF) and my Mom should be finding out soon the results of her CT scan. Just found out today that my sister has been dealing with more frequent seizures, probably the result of the extra stress and the resulting change in body chemistry that most likely affects her body's response to the meds she takes to control them. If anybody could use some good news, it's those guys and I wish to God they could get some. I know first hand how toxic stress is to your body and well being. I'm hoping that all this bad stuff will be a bad memory one day and the worry over at my Mom and Rich's place will go away or at least be held to the background. No matter what, we're all pretty well battle tested so I'm confident that whatever happens, we'll be able to roll with it and come out on top, whatever that means. For now, prayers and positive energy is all we can do and will take either from whoever is reading this! I can see how prayer and faith is carrying my friends the Reeds as Mike continues his battle with MDS and Hodgkins and know that it can only help us so thanks in advance if you don't mind!
Ok, that's all for now, time to hopefully fall out of this conscious state into a blissful dream state :)
Thanks for reading, Chris
Where to begin though? I guess maybe I should start by saying that I'm still doing relatively well (for someone in my shoes) but it's a constant struggle. I probably have written about this before but I've just learned to accept all the little nagging things (some not so little) as I deal with the developing long term affects of my body taking such a pounding after going through all the toxic therapy. My back problems are well documented and I'm just recovering from a "pop" that occurred a couple weeks ago as I was moving stuff around in my garage. It pretty much put me down for 7-10 days and I couldn't do much of anything. It's much better now and have been testing it doing more stuff to the house and going to the Home Depot today grabbing some drywall and lumber (tip, don't try to load drywall on top of your car on a windy day!). Hopefully I can get out of bed tomorrow!
Another once small issue (in terms of size and pain) has developed into a full blown major issue (although still small in size) and that's my two big toes! Unbelievably, the inside bottom portion of the nail on both toes has become infected and making it almost impossible to wear shoes these days for more than a couple of hours. Crazy how something so small can be so painful! It's slowly been developing as the temps here in Michigan drop and I'm no longer able to wear flip flops like I've mostly been wearing the last couple of years. I have wide feet and now know that I have to be really conscious of the shoes I wear. Gone are the days where I can wear my Chuck Taylors or any shoe for that matter with a narrow toe. Ever since I dealt with the Guillaine Barre Syndrome from SGN-35, my feet have been messed up and often get swolllen if I'm on my feet for very long. I don't realize that they're swollen when I have my shoes on and the result is my toes being crammed in there and each step forcing the skin over the nail (at least that's my theory ;). Anyway, I'm now trying to figure out how to deal with these ingrown toenails and can tell you it's no picnic.
I've also been dealing with some more frequent headaches that I haven't had since chemo. The culprit while on chemo was not drinking enough water and I think the same holds true today (but don't remember having to drink so much to keep the headaches away). I think I'm writing this to document in addition to bitching and moaning to make myself feel better, haha. Anyway, something to keep my eye on after a couple of scares from the doc's in how Hodgkins can sometimes go into the brain albeit rare.
On a positive note, I think I'm going to do another sweet road trip here in a couple of weeks, this time on the East Coast. I've been invited to New York for Halloween and the crazy parade they have every year. So, the plan is to drive to New York, check out all the "freaks and icons" (actually borrowed that from an album title by Dzihan and Kamien which is a must have for your electronic/house/ambient collection), then drive south down the coast and eventually ending up in Delray Beach to leave my little car for the rest of the winter. I still have to work out the details or can perhaps just let the trip unfold on it's own as I connect with friends en route or am pulled by certain sites that I haven't experienced. I'm kinda leaning towards just going with the flow with a loose outline of things I want to see. Interesting to find out how it unfolds...
I think I'm ready for an adventure, it's been a while since I've done anything like this so I'm looking forward to it. Plus, I think the colors will still be changing as I head south so that should make for some nice driving. Hoping my 23 year old car with almost a half million miles on it continues to run like a champ. I recently had the brakes fixed along with major work earlier this summer to the transmission and other stuff so it should hopefully be ok. I should be extra careful documenting this trip, maybe BMW will be interested in my story, just saying... ;)
That's about all I've got in me for now. My spirits are mainly good except when I think about what my Mom and Rich are going through right now along with my Sister. Rich has his surgery now scheduled to remove a cancerous spot on his lung (despite his CHF) and my Mom should be finding out soon the results of her CT scan. Just found out today that my sister has been dealing with more frequent seizures, probably the result of the extra stress and the resulting change in body chemistry that most likely affects her body's response to the meds she takes to control them. If anybody could use some good news, it's those guys and I wish to God they could get some. I know first hand how toxic stress is to your body and well being. I'm hoping that all this bad stuff will be a bad memory one day and the worry over at my Mom and Rich's place will go away or at least be held to the background. No matter what, we're all pretty well battle tested so I'm confident that whatever happens, we'll be able to roll with it and come out on top, whatever that means. For now, prayers and positive energy is all we can do and will take either from whoever is reading this! I can see how prayer and faith is carrying my friends the Reeds as Mike continues his battle with MDS and Hodgkins and know that it can only help us so thanks in advance if you don't mind!
Ok, that's all for now, time to hopefully fall out of this conscious state into a blissful dream state :)
Thanks for reading, Chris
Monday, October 10, 2011
What the Heck...
Just when I thought things couldn't get any worse in my family, I called my Mom today to find out the results of Rich's needle core biopsy and it's confirmed, Rich has lung cancer. While expected, it's still hard to hear and of course troubling. The big blow was still yet to come however... After we discussed Rich, my Mom told me she had an x-ray last week and she has inflamed lymph nodes in her chest which prompted the medical team to order a CT scan for this Thursday, ugh ugh ugh. I didn't know this but she's been really tired lately (symptom) and has developed a cough (symptom) which is rare for her. Kinda freaking out here but going to remain calm and deal with this like I deal with my own crap, the best I can.
I just don't understand why our family has to deal with so much... Seems very unfair.
Not sure what else to say...
Time to put my own troubles on the back burner and do my best to try and process all of this. Hopefully it'll be nothing and we can go back to dealing with just Rich's pending surgery and successful recovery.
Keeping the faith,
Chris
I just don't understand why our family has to deal with so much... Seems very unfair.
Not sure what else to say...
Time to put my own troubles on the back burner and do my best to try and process all of this. Hopefully it'll be nothing and we can go back to dealing with just Rich's pending surgery and successful recovery.
Keeping the faith,
Chris
Wednesday, September 28, 2011
Quick Update
Hello everyone,
It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!
I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D
So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.
Thanks again for all of your support and prayers, they're working!
Hope everyone has an awesome day and look forward to the next update.
Cheers!
Chris
It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!
I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D
So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.
Thanks again for all of your support and prayers, they're working!
Hope everyone has an awesome day and look forward to the next update.
Cheers!
Chris
Monday, September 19, 2011
Sad News
I found out yesterday at Rich's 67th birthday party that my cousin Rodney - who'd been fighting Non-Hodgkins Lymphoma - passed away. One second we were enjoying the party then the next, those who got word, were in shock (we didn't say anything to the other side of the table as to not ruin the party). It made for a bittersweet day as we celebrated Rich (happy birthday!) and all that he's dealing with right now with his heart and having a PET positive spot on his lung. But the news of Rodney's passing made it difficult to enjoy the rest of evening...
I just talked to Rodney and his wife a couple of weeks ago regarding potential resources for information and my experience with similar treatments that we shared. He sounded hopeful and I thought they'd be able to find something either in Seattle or New York or Houston... I think the disease was pretty aggressive and didn't respond to anything for very long. I know it was causing a great deal of pain as it was in his hip. He did two nasty treatments, RCHOP and ICE. I haven't had RCHOP but know it's nasty and had ICE and I know first hand it's no picnic. He did them consecutively with no real break, pretty rough stuff for a 38-39 year old but much tougher I'm sure in your 60's. I've got a lot of respect for what he had to deal with...
My heart goes out to his wife Renee and the rest of their immediate family along with Randy and Melody.
Lymphoma is a horrible disease and know so many people struggling with it. I'm hopeful that all of the new drugs that are coming out now along with the new Gene Therapies, the research for a cure will continue to expand and continue to get funded. If you ever would like to donate to a good charity, the Lymphoma society is an excellent choice.
Rest in Peace Rodney
By the way, prayers and good thoughts for Mike Reed as he continues to fight MDS along with his Hodgkins. He has ups and downs and the latest I read today it wasn't the best news... Hoping for an upswing in blood counts and Mikes spirits. I'm going to put his Caring Bridge link up on my blog list for anyone who'd like to leave a positive message. The guy is a warrior, fighting Hodgkins for I think 8-9 years, legendary...
A bit of good news about me, I'm feeling better, more energized! I've just been sleeping like a bear lately and I think my body just needed the rest. Today was the best day yet as I did the backs splash in the kitchen in glass mosaic tile. I had energy to burn after running errands and making dinner. In other words, I felt normal today again, so nice :) I think I just have to make sure I take breaks between big events. I'm sure having a couple beers at each event contributes to my body shutting down... I just can't process alcohol anymore except for a drink here or there. The good news on that though is when I do have a drink, there's little to no pain in my back which gives me hope that everything is cool in there if you know what I'm saying ;) I'll know either way on Wednesday after an all day affair down at Karmanos starting at 9:30. Yup, part of being a guinea pig on these clinical trials means that they can shoot you up with radioactive sugar whenever they want. Seems like I have a PET scan every other month these days. Wonder if that's going to catch up with me one day...
Anyway, I got a little carried away, I wanted this post to be about Rodney only but sure he wouldn't mind.
Good night all, Chris
I just talked to Rodney and his wife a couple of weeks ago regarding potential resources for information and my experience with similar treatments that we shared. He sounded hopeful and I thought they'd be able to find something either in Seattle or New York or Houston... I think the disease was pretty aggressive and didn't respond to anything for very long. I know it was causing a great deal of pain as it was in his hip. He did two nasty treatments, RCHOP and ICE. I haven't had RCHOP but know it's nasty and had ICE and I know first hand it's no picnic. He did them consecutively with no real break, pretty rough stuff for a 38-39 year old but much tougher I'm sure in your 60's. I've got a lot of respect for what he had to deal with...
My heart goes out to his wife Renee and the rest of their immediate family along with Randy and Melody.
Lymphoma is a horrible disease and know so many people struggling with it. I'm hopeful that all of the new drugs that are coming out now along with the new Gene Therapies, the research for a cure will continue to expand and continue to get funded. If you ever would like to donate to a good charity, the Lymphoma society is an excellent choice.
Rest in Peace Rodney
By the way, prayers and good thoughts for Mike Reed as he continues to fight MDS along with his Hodgkins. He has ups and downs and the latest I read today it wasn't the best news... Hoping for an upswing in blood counts and Mikes spirits. I'm going to put his Caring Bridge link up on my blog list for anyone who'd like to leave a positive message. The guy is a warrior, fighting Hodgkins for I think 8-9 years, legendary...
A bit of good news about me, I'm feeling better, more energized! I've just been sleeping like a bear lately and I think my body just needed the rest. Today was the best day yet as I did the backs splash in the kitchen in glass mosaic tile. I had energy to burn after running errands and making dinner. In other words, I felt normal today again, so nice :) I think I just have to make sure I take breaks between big events. I'm sure having a couple beers at each event contributes to my body shutting down... I just can't process alcohol anymore except for a drink here or there. The good news on that though is when I do have a drink, there's little to no pain in my back which gives me hope that everything is cool in there if you know what I'm saying ;) I'll know either way on Wednesday after an all day affair down at Karmanos starting at 9:30. Yup, part of being a guinea pig on these clinical trials means that they can shoot you up with radioactive sugar whenever they want. Seems like I have a PET scan every other month these days. Wonder if that's going to catch up with me one day...
Anyway, I got a little carried away, I wanted this post to be about Rodney only but sure he wouldn't mind.
Good night all, Chris
Thursday, September 15, 2011
Recovery Mode
I have to say, it's been a whirlwind since the last time I posted... Seems like right after I wrote that last one I had something going on everyday and I think it caught up with me as I'm still trying to recover.
It started with going to the ballgame two weekends ago where the Tigers were down 8-1 and there were black skies on the horizon and my buddy and I decided to leave and head home only to watch the Tigers miraculously come back and win on TV of course, ugh! Anyway, we decided to head to the free festival after in Royal Oak, "Arts Beats and Eats" where one second the guy from Foreigner was attempting to perform (it was actually pretty bad) and all of the sudden the storms that were looming down at the ballpark made there way North to Royal Oak. The next thing I know I'm scrambling to find shelter as the storm came gusting through with ferocity. It was kind of unnerving to be stuck under a tent with dozens of other people in the dark. I decided to go back out into the rain to find a better situation and found another tent that wasn't so packed but still pretty dark. That was pretty much it for the evening and jumped in the car to drive home only to find out that my street had no power, crap. I thought it would only last a couple of days - unfortunately a couple days turned into six and it got kinda creepy. So, with no power here, I decided to head down to Cleveland to catch the Tigers take on the Indians. Tickets down there were super cheap and my buddy had Hilton points so we got to stay downtown at the Hampton with parking included, perfect. Couldn't have asked for better games as we got to see Justin Verlander pitch the night game on Monday and witnessed an awesome comeback for the next day game. I even got a ball thrown to me by our best player, Miguel Cabrera. The Indian fans were so sparse we were able to sneak down right behind the Tiger dugout. Embarrassingly, when he threw me the ball, I actually dropped it, doh! The guy was nice enough to roll it back up the dugout where my buddy grabbed it and handed it to me, pretty cool!
The ball!
Me n Todd, a couple of geek baseball fans!
So, it was back to Detroit and unfortunately, my power still hadn't been turned on. In fact, turns out a Tornado came through and wiped on tons of power lines and uprooted some grand old trees. It was almost like Florida after a hurricane, tree branches and crap everywhere... Unfortunately, my ugly tree at my new place didn't get blown over but the tree I planted 13 years ago at my first place, a beautiful Bradford Pear, was blown over and all over the front yard, pretty sad.
Huge tree down in the park behind my house.
The remains of my little Bradford Pear Tree :(
As I was saying, I was now back home but it was just a shell of a home, crazy how much I depend on power! I was able to get my hands on a generator and at least had some light and could charge up my phone but that was it. The stuff in my fridge had already passed the point of no return so had to toss it all. Everything just seemed to get turned upside down, all you could hear was the loud noise of generators running all over the neighborhood, needless to say, it was tough to sleep.
I finally got my power back I think on last Friday morning thankfully. The sports madness didn't stop in Cleveland, I ended up going to the ballgame again on Friday night where they of course came back and won (ended up winning 12 straight before tonight) and the next evening, had a chance to be part of history attending the first night game at the Big House at the University of Michigan. That unto itself would've been great... What put the night over the top was the fact that one of the greatest games ever was played that evening in front of 115,000 fans. The scene was surreal, never been part of something like that. I still get a dropped stomach when I think about the energy at that game with all those people, it was something I'll never forget.
Me and Mike along with 115,000 other fans! Btw, Mike could've got big money for these tickets had he sold them but instead, invited me to go with him. Thankful to have good friends.
The mayhem after the game when Michigan scored a touchdown going 80 yards in 30 seconds, unreal!
That was last Saturday, today is Thursday and I haven't been right since. It actually started on the way home from Cleveland and hasn't resolved yet. I just don't have any energy! It's hard for me to get out of bed before noon these days. My whole body aches, especially my back. I just can't seem to get going... I had a little burst tonight and used it to clean up my place which got disgusting during the power outtage. Hoping to start feeling better tomorrow for the DIY street fair right here in my home town of Ferndale :)
I've got a scan next week on the 21st so we'll see if it's the medicine not doing it's job anymore and I have progression. I'm of course hoping for something better like maybe I'm just worn down from all the craziness but something has me a bit concerned. Let's just say I'm not as confident going into this scan as I was the last one...
Time will tell I suppose. I'll probably wait until then to update. I have the scan on Wednesday then I'm off to Seattle courtesy of my buddy Sean and the Delta buddy pass program! Chances are I'll be updating from the great northwest, should be fun :)
Until then...
It started with going to the ballgame two weekends ago where the Tigers were down 8-1 and there were black skies on the horizon and my buddy and I decided to leave and head home only to watch the Tigers miraculously come back and win on TV of course, ugh! Anyway, we decided to head to the free festival after in Royal Oak, "Arts Beats and Eats" where one second the guy from Foreigner was attempting to perform (it was actually pretty bad) and all of the sudden the storms that were looming down at the ballpark made there way North to Royal Oak. The next thing I know I'm scrambling to find shelter as the storm came gusting through with ferocity. It was kind of unnerving to be stuck under a tent with dozens of other people in the dark. I decided to go back out into the rain to find a better situation and found another tent that wasn't so packed but still pretty dark. That was pretty much it for the evening and jumped in the car to drive home only to find out that my street had no power, crap. I thought it would only last a couple of days - unfortunately a couple days turned into six and it got kinda creepy. So, with no power here, I decided to head down to Cleveland to catch the Tigers take on the Indians. Tickets down there were super cheap and my buddy had Hilton points so we got to stay downtown at the Hampton with parking included, perfect. Couldn't have asked for better games as we got to see Justin Verlander pitch the night game on Monday and witnessed an awesome comeback for the next day game. I even got a ball thrown to me by our best player, Miguel Cabrera. The Indian fans were so sparse we were able to sneak down right behind the Tiger dugout. Embarrassingly, when he threw me the ball, I actually dropped it, doh! The guy was nice enough to roll it back up the dugout where my buddy grabbed it and handed it to me, pretty cool!
The ball!
Me n Todd, a couple of geek baseball fans!
So, it was back to Detroit and unfortunately, my power still hadn't been turned on. In fact, turns out a Tornado came through and wiped on tons of power lines and uprooted some grand old trees. It was almost like Florida after a hurricane, tree branches and crap everywhere... Unfortunately, my ugly tree at my new place didn't get blown over but the tree I planted 13 years ago at my first place, a beautiful Bradford Pear, was blown over and all over the front yard, pretty sad.
Huge tree down in the park behind my house.
The remains of my little Bradford Pear Tree :(
As I was saying, I was now back home but it was just a shell of a home, crazy how much I depend on power! I was able to get my hands on a generator and at least had some light and could charge up my phone but that was it. The stuff in my fridge had already passed the point of no return so had to toss it all. Everything just seemed to get turned upside down, all you could hear was the loud noise of generators running all over the neighborhood, needless to say, it was tough to sleep.
I finally got my power back I think on last Friday morning thankfully. The sports madness didn't stop in Cleveland, I ended up going to the ballgame again on Friday night where they of course came back and won (ended up winning 12 straight before tonight) and the next evening, had a chance to be part of history attending the first night game at the Big House at the University of Michigan. That unto itself would've been great... What put the night over the top was the fact that one of the greatest games ever was played that evening in front of 115,000 fans. The scene was surreal, never been part of something like that. I still get a dropped stomach when I think about the energy at that game with all those people, it was something I'll never forget.
Me and Mike along with 115,000 other fans! Btw, Mike could've got big money for these tickets had he sold them but instead, invited me to go with him. Thankful to have good friends.
The mayhem after the game when Michigan scored a touchdown going 80 yards in 30 seconds, unreal!
That was last Saturday, today is Thursday and I haven't been right since. It actually started on the way home from Cleveland and hasn't resolved yet. I just don't have any energy! It's hard for me to get out of bed before noon these days. My whole body aches, especially my back. I just can't seem to get going... I had a little burst tonight and used it to clean up my place which got disgusting during the power outtage. Hoping to start feeling better tomorrow for the DIY street fair right here in my home town of Ferndale :)
I've got a scan next week on the 21st so we'll see if it's the medicine not doing it's job anymore and I have progression. I'm of course hoping for something better like maybe I'm just worn down from all the craziness but something has me a bit concerned. Let's just say I'm not as confident going into this scan as I was the last one...
Time will tell I suppose. I'll probably wait until then to update. I have the scan on Wednesday then I'm off to Seattle courtesy of my buddy Sean and the Delta buddy pass program! Chances are I'll be updating from the great northwest, should be fun :)
Until then...
Thursday, September 1, 2011
Winding down the summer
Me last week, feeling blessed :)
Sorry, I haven't felt like posting for some reason. Maybe because my normal time on the computer, at night before I crash has been spent catching up on Breaking Bad! I'm totally hooked on that show and I'm finally caught up after watching half of season two, all of three and the first seven of season 4. I can't decide if I like BB or Dexter better...
Anyway, just thought I'd check in and let everyone know I've so far avoided getting sick and thus a trip to the emergency room. I have a feeling my neutrophils have gone up. Usually when they're really low (like my last blood test), I can feel it in my throat, almost like the feeling of just before getting sick. It's weird how it always starts in your throat when your getting sick... Like I said though, that feeling is gone and I'm feeling pretty well and still enjoying the summer. Seems like it's lasted forever for some reason. The weather started off in June pretty crappy but got nice toward the end of the month and it's lasted the entire season. I think I'm ready for a change though and looking forward to the colors starting to turn...
My place is still coming along (the kitchen is almost done), have had a chance to get away up to Northern Michigan and starting to plan a trip out to Seattle to see my friends out there plus soak in some of the beautiful Northwest at a perfect time of the year to go :)
This weekend should be fun in neighboring Royal Oak as the Arts Beats and Eats festival is happening. Tons of free concerts and of course lots of cool artwork and great food. I had a blast last year and I think it's even bigger this year, Ford had a good year!
That's pretty much it for now, sorry if these posts are kinda boring. I've had a ton of things going through my mind that I've thought about sharing but have felt compelled to keep it simple. Sometimes it can bite you in the ass when you express your feelings on a public blog like this. People sometimes may get the wrong idea or sometimes I'm sure this stuff can scare people. It's hard to toe the line of being a Refractory Cancer survivor and a normal person. I so much want to just be a normal person but this little cancer thing somehow always seems to stop that from happening. It's something that will always be with me and wish so much sometimes I could just pack it up and get rid of it. How does one erase the stigma of having this disease?! It affects so many different aspects of my life in a negative way, what the hell!!!
Well, I guess I've gone from not sharing to sharing, weird how that happens. Funny thing is, I feel better already. Mission accomplished. Same reality, but negative thoughts released into the universe, pretty cool.
I haven't heard anything about my cousin Rodney so hoping things are getting better with that. I know my friend Mike Reed is still scrapping and hoping his blood counts can continue to rise and hold. Last I read about Zach is that the treatment he was on did nothing and they're hoping to get another chance at SGN-35 as it's one thing that worked in the past. The only problem is now that it's FDA approved (I must congratulate and thank Seattle Genetics for their work even though I had a horrible reaction to it) the cost of the drug is $13,500 per infusion. Yes, cancer drugs are expensive, especially ones that are just released for clinical use. Because of this, seems as if they're may be trouble getting insurance to pay for it without scratching and clawing. Crazy that someone like Zach who participated in the clinical trial to get the drug approved like myself, essentially making himself a Guinea Pig like the rest of us who partake in clinical trials, might not have the chance to use the drug to extend his life and buy him time for a cure. Something seems terribly wrong there...
Sorry about the rant, I guess I do have a lot on my mind...
Anyway, it's getting pretty late and the Benadryl is kicking in (just like allergies have been kicking my ass).
Hope all is well to the awesome people who keep up with me and this blog. I really appreciate it.
I'm out...
Thursday, August 25, 2011
Problem could be developing, ugh...
So I went in for bloodwork on Wednesday and while my platelet count was pretty steady at 41K, Dr. Ram told me for the first time (I really don't pay great attention to my blood results) that my neutrophils have been trending downward for a while now and Wednesday's test had me at 1.1, the lowest I can be is 1.0, bummer... Probably explains why I've been feeling a little crappy lately. I had a scare on Monday evening when I developed a nasty migraine headache and was up vomiting all night, not fun. I think I may have contributed to it by roughing up my counter tops in another attempt to refinish them (this time it worked :) without a mask on and also not drinking enough water as it was hot out Monday. Anyway, it went away next afternoon but the lack of sleep all night took a toll on me and I've trying to catch up ever since. Going back to the neutrophils (basically your immune system count), I have to be really careful of avoiding situations where there may be sick people in a closed environment. I have to bring a thermometer with me to check for fevers and if I get one, have to go to the emergency room as per Ram. Again, bummer...
I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.
Just when I thought I had it good... rats!
I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).
Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.
I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.
Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!
Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.
Optimistically,
Chris
I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.
Just when I thought I had it good... rats!
I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).
Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.
I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.
Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!
Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.
Optimistically,
Chris
Thursday, August 11, 2011
Continuing to do relatively well :)
Because I'm tired and just posted in my Hodgkins Forum, I thought I'd just copy what I wrote in my post there. I finally finished my bathroom! I'm now on to the kitchen which isn't nearly the project although I just had to rip out a section of my ceiling from the leak that was recently fixed in the bathroom, blah, blah, blah... Anyway, I'm redoing my counter tops (which were a dirty white) with this nice new product from Lowes where you reface rather than replace the tops. It's a 4-5 step process and hoping I can seal em up tomorrow and they look good. I have so many other little projects going on... I'm anxious to finish the inside of the place so I can spend the rest of the summer going on trips (hopefully).
Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!
Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)
Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.
It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).
I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.
Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.
I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).
Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.
__________________
Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001 http://chris-alt-del.blogspot.com/
Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!
Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)
Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.
It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).
I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.
Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.
I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).
Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.
__________________
Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001 http://chris-alt-del.blogspot.com/
Saturday, August 6, 2011
Thoughts and prayers for the Keeleys
I just wanted to take this opportunity to honor another lost comrade to this ugly disease. My prayers go out to Kimberly, who lost her husband Andy after six years of fighting Hodgkins. I remember reading about Andy when I first joined the Hodgkins forum and feeling so bad that he had refractory cancer and how he did it. Well, I'm in the same boat now and I know how he did it, the best that he could. Judging by what's written below, Andy was one great guy who lived a very rich life. Makes me want to make more of an impact, very inspiring and I know my fellow Hodgkins friends hearts' go out to Kimberly and will miss updates about Andy. He never really posted but you got a sense of how he was struggling with Kimberly's posts. I know he's comfortable now though. Rest in peace Andy, and peace be with you Kimberly.
Here is the obituary for Andy:
Stephen Andrew "Andy" Keeley of Alpharetta, Georgia died on August 3, 2011 after more than six years battling Hodgkin's Lymphoma, which is a rare cancer of the lymphatic system. Andy grew up in Brevard, NC. He married his wife Kimberly on top of Stone Mountain in Georgia in 1998. They had two children together, Olivia and Calvin, ages nine and seven.
Andy was a 1988 graduate of Brevard High and attended NC State where he earned his degree in Mechanical Engineering. He worked as an environmental engineer with Mactec, Inc. Andy was very environmentally conscious. He loved what he did and the people with whom he worked.
Andy was adventurous - cycling across America after high school, traveling through Europe and Costa Rica, running with the bulls in Pamplona, working in Amsterdam, and backpacking through the western and eastern United States. He was relaxed, calm, and comfortable in all situations. Andy enjoyed playing pool, woodworking and was an avid movie enthusiast. His favorite movie was Harold and Maude. Andy loved music, especially Jeff Buckley, Cake, Rusted Root, and Sara McLachlan. He loved taking walks and good food.
Andy did not let cancer stop him from having as normal a life as he could. He was a wonderful husband and father. Even as cancer eroded his physical abilities, he was going on Cub Scout camping trips, to rocket launches and hockey games, to the children's gifted classes at Georgia State and to Girl Scout activities. He loved to take his children to the Greenway, the pool and the movies. He taught both his children to ride their bikes a few days before being hospitalized with lung problems in May.
Andy was a proud member of the Unitarian Universalist Metro Atlanta North congregation in Roswell, Georgia.
Andy is survived by his wife, Kimberly Keeley, his children, Olivia and Calvin, his parents, Dr. James and Jo Anne Keeley of Brevard, NC , Dr. Mike and Rhonda Keeley of Shelby, NC, Scott and Kim Keeley of Charlotte, NC and Matt Keeley of Istanbul, Turkey.
In lieu of flowers, the family would prefer contributions be made toward a fund for his children's college education, which may be sent to P.O. Box 4876 Alpharetta, GA 30023. Additional contributions may also be made to the Leukemia Lymphoma Society or to Hospice of Cleveland County.
Here is their Caring Bridge site if you would like to check in:
http://m.caringbridge.org/visit/andykeeley/journal/entry/id/9324234/page/1
Wednesday, July 27, 2011
Platelets holding on
Went to Karmanos today for blood work and still able to continue on the trial with platelets at 37K. Have to be really careful with my platelets so low as I bruise really easily and the bloody noses continue. I've learned the effectiveness of oxyclean for the pillowcases, that stuff really works!
Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.
BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!
Feeling well and hoping to keep it rolling...
Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.
BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!
Feeling well and hoping to keep it rolling...
Wednesday, July 20, 2011
Melting
I think I'm melting, literally... It's been hotter and muggier here in Michigan over the last week than it is down in Florida this time of year and that's saying a lot. The worst part is that I don't have air conditioning in my house (but thankfully do in my bedroom) and it's pretty damn draining.
I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.
So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...
So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...
Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)
Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.
Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!
Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...
Out like a light,
Chris
I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.
So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...
So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...
Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)
Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.
Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!
Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...
Out like a light,
Chris
Wednesday, July 6, 2011
No official word yet, but...
I've been waiting to post the official results of my latest CT scan but unfortunately I haven't received them yet. I did however receive the unofficial quick read and the guess was reduction in some areas and stable in others. I probably could have called and pushed for the official reading but the truth is, I really don't care. The most important thing to me right now is I'm feeling relatively awesome despite some side effects and having a great summer!
Playing golf with buddies, finishing up just in time as the sun was setting
At the ballgame with my buddy Eric
The crazy futuristic stage at the U2 concert (which was incredible).
The bathroom project just after demo (before shot)
The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...
So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)
I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.
I feel truly blessed :)
Playing golf with buddies, finishing up just in time as the sun was setting
At the ballgame with my buddy Eric
The crazy futuristic stage at the U2 concert (which was incredible).
The bathroom project just after demo (before shot)
The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...
So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)
I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.
I feel truly blessed :)
Tuesday, June 28, 2011
Breathe
Trying to breathe and relax. CT scan tomorrow, feeling decent, no idea how this is going to turn out.
Cautiously optimistic while being realistic. Remission would be incredible, reduction would be awesome, stable disease would be ok, progression would of course suck.
No matter, life goes on.
Details on results and other stuff like my first U2 concert in my next post.
Adios Mi Amigos
Cautiously optimistic while being realistic. Remission would be incredible, reduction would be awesome, stable disease would be ok, progression would of course suck.
No matter, life goes on.
Details on results and other stuff like my first U2 concert in my next post.
Adios Mi Amigos
Wednesday, June 22, 2011
Insomnia Post
Hello Everyone,
Just thought I'd check in, can't get to sleep. While this is nothing new, I remember that I used to do these posts during bouts of insomnia and they actually would help me fall asleep, so here goes!
While the back pain is still staying away, I've been dealing with some side effects from the RAD001. One of them is mucositis or painful lesions inside my mouth as well as something called angular chelitas which is a sore that won't heal on the corner of my mouth. At first, I thought it was just chapped lips but when I showed Dr. Ram, he told me it was a fungus or bacteria that is commonly caused by the drug. Just a couple minor but painful reminders that I'm still in treatment every time I eat, talk or smile, nice... I also contracted some kind of bug that has knocked me down pretty hard. I think it's a combination of allergies and the bug and the result is nasty headache, stuffed up, sore throat, cough, lost voice and complete exhaustion.
Funny, before diagnosis, I never used to get sick!
I know my last post was nice and rosy and truth be told, I was feeling really well when I wrote it. It just never seems to last very long... I guess I'm used to and it really makes me really appreciate it when I'm feeling almost totally healthy. In fact, it's now the next morning (writing this did make me sleepy and I did fall asleep before finishing, ha!) and I'm feeling better. I think one more day and I'll hopefully be back strong. The plan for the mouthsores is to go get some lidocane mouthwash and canker sore medicine (the sores feel like canker sores although much worse). The thing on the corner of my mouth seems to be healing as well (been using neosporin) so maybe me venting has helped something (like I say, it's always better to get it out!).
So, the plan for today is to go to an outside blood draw facility where they're going to draw like 16-20 vials to be sent Fed Ex to Baylor University in Houston. They'll then test my blood for EBV and if I'm positive, they'll somehow start growing my own modified killer T cells which are supposed to hunt down and kill any Hodgkins cells in my body. I'm also going to resume working on my bathroom which is almost done! In fact, I took my first proper shower here two nights ago and it was like a dream! I think by the next post I'll be able to post some before and after pictures. Next up is the kitchen which shouldn't be anywhere near as bad. Good times ;)
I think I'm ready to take a road trip or trip in general to break the monotony here. It's rewarding and makes me feel useful to be working on something (this house) but truth be told it's pretty stressful living in a place that's under construction. It's impossible to keep it clean and I can never find anything! I think I want to get away from this for a bit to recharge my batteries. Maybe a trip up to Northern Michigan might be in the cards, we'll see. I'm waiting for my convertible to be fixed as I just found out the transmission is shot. In fact, it happened right after my last appt. at Karmanos and had to drive home all the way in second gear! I have a mechanic I found last year who happens to live in Windsor Canada and his prices are almost half of anyone around here so I decided to take the car to him last week. It was pretty interesting driving all the way to the tunnel from Ferndale through some of the worst parts of Detroit as I had to take side streets all the way. You can imagine some of the looks I got driving 20 mph in the ghetto. Most people doing that are there for the wrong reasons I'll just leave it at that. Thankfully I made it and should be picking up the car tomorrow. It's going to take a nice chunk out of my savings but I've committed to that car (actually need it for Florida) so I'll bite the bullet and hope nothing else major happens to it anytime soon.
Alright, that's all I've got for now. For those who read this that I haven't talked to in a while, hope all is well and look forward to catching up soon.
Happy Hump Day!
Chris
Just thought I'd check in, can't get to sleep. While this is nothing new, I remember that I used to do these posts during bouts of insomnia and they actually would help me fall asleep, so here goes!
While the back pain is still staying away, I've been dealing with some side effects from the RAD001. One of them is mucositis or painful lesions inside my mouth as well as something called angular chelitas which is a sore that won't heal on the corner of my mouth. At first, I thought it was just chapped lips but when I showed Dr. Ram, he told me it was a fungus or bacteria that is commonly caused by the drug. Just a couple minor but painful reminders that I'm still in treatment every time I eat, talk or smile, nice... I also contracted some kind of bug that has knocked me down pretty hard. I think it's a combination of allergies and the bug and the result is nasty headache, stuffed up, sore throat, cough, lost voice and complete exhaustion.
Funny, before diagnosis, I never used to get sick!
I know my last post was nice and rosy and truth be told, I was feeling really well when I wrote it. It just never seems to last very long... I guess I'm used to and it really makes me really appreciate it when I'm feeling almost totally healthy. In fact, it's now the next morning (writing this did make me sleepy and I did fall asleep before finishing, ha!) and I'm feeling better. I think one more day and I'll hopefully be back strong. The plan for the mouthsores is to go get some lidocane mouthwash and canker sore medicine (the sores feel like canker sores although much worse). The thing on the corner of my mouth seems to be healing as well (been using neosporin) so maybe me venting has helped something (like I say, it's always better to get it out!).
So, the plan for today is to go to an outside blood draw facility where they're going to draw like 16-20 vials to be sent Fed Ex to Baylor University in Houston. They'll then test my blood for EBV and if I'm positive, they'll somehow start growing my own modified killer T cells which are supposed to hunt down and kill any Hodgkins cells in my body. I'm also going to resume working on my bathroom which is almost done! In fact, I took my first proper shower here two nights ago and it was like a dream! I think by the next post I'll be able to post some before and after pictures. Next up is the kitchen which shouldn't be anywhere near as bad. Good times ;)
I think I'm ready to take a road trip or trip in general to break the monotony here. It's rewarding and makes me feel useful to be working on something (this house) but truth be told it's pretty stressful living in a place that's under construction. It's impossible to keep it clean and I can never find anything! I think I want to get away from this for a bit to recharge my batteries. Maybe a trip up to Northern Michigan might be in the cards, we'll see. I'm waiting for my convertible to be fixed as I just found out the transmission is shot. In fact, it happened right after my last appt. at Karmanos and had to drive home all the way in second gear! I have a mechanic I found last year who happens to live in Windsor Canada and his prices are almost half of anyone around here so I decided to take the car to him last week. It was pretty interesting driving all the way to the tunnel from Ferndale through some of the worst parts of Detroit as I had to take side streets all the way. You can imagine some of the looks I got driving 20 mph in the ghetto. Most people doing that are there for the wrong reasons I'll just leave it at that. Thankfully I made it and should be picking up the car tomorrow. It's going to take a nice chunk out of my savings but I've committed to that car (actually need it for Florida) so I'll bite the bullet and hope nothing else major happens to it anytime soon.
Alright, that's all I've got for now. For those who read this that I haven't talked to in a while, hope all is well and look forward to catching up soon.
Happy Hump Day!
Chris
Saturday, June 11, 2011
Summer is rolling along...
Chili and I driving down 75 with the top down on a nice warm evening. Probably not the safest thing to do, taking a self portrait while holding my dogs chin driving 70 mph but that's how I roll I guess!
I think I've been neglecting my blog lately which is a good and bad thing. Good because every waking moment I have lately has been spent either working on this house, napping or hanging out with friends. Not to mention, I'm trying to finish this great book called "Life" written by Keith Richards of the Stones. The title is a little misleading as you would think it would be some type of self help/awareness - whatever kind of book. Not quite... It's basically a firsthand account from Keef as he witnessed and was part of the Rock and Roll Revolution and the evolution of the Rolling Stones as they were one of the main drivers of this movement. The book has been fascinating to me being a lifelong Stones fan... Anyway, times that I would be updating this blog have been spent trying to turn a few more pages in the almost two inch thick hardcover. These days, post cancer diagnosis, I have a hard time concentrating on anything for more than an hour or so. Call it post cancer diagnosis/treatment induced A.D.D. I guess. Of course this is my own unofficial personal un-researched diagnosis but have a feeling if I looked it up would find plenty of information out there regarding this and people who have refractory cancer...
I'm writing this, staring out of my dining room window at an overcast sky on a lazy Saturday morning. The weather has been so weird here as per typical of Michigan. Earlier in the week, the temperatures got up into the mid 90's with some serious humidity. Of course, I have no air conditioning so I was pretty sleep deprived there for a couple of days. I decided to rig a window air conditioning unit for my room and sure enough, as soon as I did, the temperatures dropped down into what I understand was the 40's on Wednesday! So, the old saying goes, if you don't like the weather in Michigan, just wait a second and it'll change (or something like that...)
Honestly though, I've been enjoying myself and feel like there's still a ways to go with this summer as it started late. It went from winter right into summer, really not much of a spring which was weird. I'm certainly glad the warm weather is here as I've grown pretty accustomed to temps at least over 60 the last few years. Guess you could say I'm a little spoiled (but in no way do I feel bad about it ;)
My life right now seems to be in transition in both my physical being as well as my personal. The personal I will keep private as I can't put everything out to the blogosphere! As for my physical well being, I have to say this is probably the most normal I've felt since pre-diagnosis. The back pain is mostly gone and when it's there, very faint. I have difficulty on certain days with my energy level but think there's a direct correlation between that and the type of sleep I get the night before. Sleep has been pretty elusive lately unfortunately. It's a catch 22. Sometimes I'll be tossing and turning until 4-5 in the morning. There's a lot of activity in this neighborhood so if I don't get my sleep in prior to 10 a.m., there's not much of a chance I'm going to get much sleep beyond that. Come 3-4 o'clock, I can barely keep my eyes open and usually have to go down for a nap to avoid being a complete zombie. This of course affects my getting to bed the next evening and the cycle repeats itself. I can sometimes break the chain, say like over the weekend and find myself pretty well rested this morning after a decent nights sleep. It was a pretty weird sleep however as I rented the movie Black Swan last night and it creeped me out while watching it and carried over into my dreams pretty much all night (I think). What a great movie though, had me on the edge of my pillow! Sometimes, I feel like Natalie Portman in that I'm living in this dream or distorted reality. On the surface, you look at me, talk to me and everything seems pretty normal. It's what goes on inside my head... Am I supposed to be doing this well when I see others around me who have the same disease struggling and even passing? How long can I sustain functioning relatively normal before the beast decides to attack again? It's a constant challenge to stay in the moment. I think it's the reason why I try to keep myself so busy. Some of my friends and family worry that I might be overdoing it which may be true. There's a reason for it as I explain to them; it helps to keep my mind where it should be and that is in the present here and now. I feel that right now, I have a perfect grip on where I should be and hope I can stay "here" for a while!
FYI, in the spirit of trying to stay one step ahead of the Hodge, I've been corresponding with the nice folks down at Baylor University in Texas as there are two brilliant doctors down there working on some amazing therapies for refractory Hodgkins. I started with Dr. Bollard who has developed a vaccine for Hodgkins survivors whose tumors test positive for EBV virus. She has developed a treatment where she takes your blood, modifies it somehow, and uses it to grow specialized cancer killing cells that your own immune system makes that will directly target the EBV virus which is contained in the tumor. It takes a few months to grow these killer cells in a lab then they infuse them back into your body. The results for heavily pre-treated Hodgkins patients has been remarkable. Two of my friends are trying it, Marsha and Bekah and can't wait to hear about their results. Unfortunately, my tumors are EBV negative. However, there is another brilliant doctor (Dr. Heslop) who is developing a similar treatment that only requires my blood to be EBV positive not my tumors. This is also a vaccine treatment that turns my killer T cells into Hodgkins seeking destroyers but with a different target. Instead of seeking out EBV virus, it seeks out a certain protein marker found in most Hodgkins cells, CD30. I know I'm CD30 positive as it's one of the requirements to get into one of my previous trials, SGN-35 (the one that almost paralyzed me!). While I'm not overly confident in the chance for success with this (my disease rarely displays CD30) it's another breakthrough in gentler less toxic therapy. I am happy to participate in any study that allows me to live a relatively normal life while battling this disease. I also found out that Dr. Bollard is developing a trial for those who's tumors are not EBV+ so I think I'll have two additional options in the months ahead.
By the way, the RAD001 technology is no slouch, it's just that I can't really explain (nor have I taken the time) how it works! ;) I have a scan next month so we'll see if this is all a fluke or it really is working! I say that anything that allows me to feel relatively normal is working (or anything that keeps the back pain away).
Feels pretty neat to be participating in this crazy science!
I hope you all have a wonderful weekend and look forward to writing more posts like this :)
Chris
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