Lots to catch up with, so here goes:
Ok, I've been holding off on this post because I was hoping that it would be a little bit more positive, but it is what it is. I had my 2nd set of scans administered on 9/17. They did the typical CT scan and PET scan, along with a mugascan (heart test) and pulmonary test (lung capacity test). The 2 latter test are taken to make sure my body continues to handle the chemo well. Those 2 came back great! Unfortunately, the PET scan wasn't as positive. The good news: all of the cancer found in my neck and middle of my chest is gone! The bad news: there's a spot just under my right collar bone that continues to show up positive on the PET scan. This is not a new enlarged lymphnode; this has been there since my original diagnosis. Unfortunately, its not reacting to the current chemo treatment. Oncologist isn't sure if its Hodgkins disease or just an area thats coming up active on the scan for another reason. Aside from the cancer, she mentioned it could be an infection, a false positive from the scan, or something else...... Needless to say that when I got this news, I was a bit devastated. Most people (with 2A Hodgkins after 8 rounds of chemo) are typically cancer free, they just need to finish out the final 4 chemo treatments, then on to radiation.
So, where do we go from here you might ask? Well, my oncologist set up an appointment for me to meet with a Thoracic surgeon (which occured last Tuesday 9/22). We scheduled another biopsy which took place just yesterday (Monday 9/28) to have part of that lymphnode removed. I'm recovering at home right now, feeling pretty good, just a sore neck, feels like I just got off the Mean Streak at Cedar Point (that ride's waaaayy too bumpy!). Along with the biopsy, the doctors also did a bronchioscopy (I believe is how its spelled), just to make sure the cancer hasn't spread. From what I've been told, we're all clear there. Unfortunately I didn't get a chance to speak with the Thoracic surgeon post-op, but my parents did. He made a cut into the base of my neck (where the neck meets the chest) and navigated his way through my uppper chest to the lymphnode just under my right collar bone. It was tough for him to get a sufficient piece of the node due to all the scar tissue from the dead Hodgkins cells, but he got something. Hopefully its good enough to make a diagnosis. If not, then we gotta do it all over again :(. Next time they'll actually have to make a couple incisions under my right armpit and will then need to collapse a freakin lung to get to the node to have the entire thing removed.
Honestly, I'm not sure where we stand. Obviously I hope that the surgeon got more than enough of the lymphnode to make a diagnosis and I'm praying like crazy that it comes back negative for Hodgkins. However, if it does come back positive, the Oncologist will need to make some changes in my chemo, then head into radiation. Hopefully that does the trick!!
I've been doing great through all of this treatment, part of me actually felt that it was going TOO good, like there had to be a setback somewhere. Well, this is it, and I'm hoping thats all this is, just a minor set back. For those of you who might be praying out there, I'll need them the most in the next couple days. I have an appointment with my Oncologist this Thursday and she should have the results. I'll keep you all posted, thanks for checking in!
Oh yea, and hopefully I get to see most, if not all of you, at the fundraiser this weekend!
Tuesday, September 29, 2009
Tuesday, September 8, 2009
Appt with Radiologist
Hope all is well with everyone! Last Wednesday I had my first appointment (or consultation) with my soon to be Radiology Oncologist. Real cool guy, about 60 years old and a huge OSU football fan.....that took a bit of the edge off!
We discussed some of the very simple things of Radiation (short/long term side effects, how long each radiation session takes, etc....). A lot of the side effects are similar to my chemotherapy, its really the long term side effects that I need to be concerned with. Those are mainly another malignancy and possible lung problems, but the radiologist said that these dont typically arise for another 15-25 years later and the chances are still slim (about 10%).
One thing that really threw me off is that radiation is going to be administered EVERY DAY for 3-4 weeks. The sessions will only take about 30 mins, but the frequency is still a little suprising. Radiation is used on every part of my body where the lymph nodes were cancerous.....for me that means neck and chest.
Radiation will begin about 4 weeks after my last chemo treatment, so the sooner I can get done with chemo the quicker I can get myself into radiation.
I'm heading back into the Cancer Center this Thursday for my 8th treatment. I'll have scans done next Thursday to see how I'm coming along.....fingers crossed!
One final thing......most of you are aware, but some may not be. My beautiful girlfriend, wonderful mom, a number of my family members and a few of my very good friends are organizing a fundraising event. I've included a link to the Evite below, please take a minute to read. It would be great to see you all there, if possible!
http://www.evite.com/pages/invite/viewInvite.jsp?inviteId=GRRVCAEPTSXUYJRWEHLC&li=iq&src=email&trk=aei6
We discussed some of the very simple things of Radiation (short/long term side effects, how long each radiation session takes, etc....). A lot of the side effects are similar to my chemotherapy, its really the long term side effects that I need to be concerned with. Those are mainly another malignancy and possible lung problems, but the radiologist said that these dont typically arise for another 15-25 years later and the chances are still slim (about 10%).
One thing that really threw me off is that radiation is going to be administered EVERY DAY for 3-4 weeks. The sessions will only take about 30 mins, but the frequency is still a little suprising. Radiation is used on every part of my body where the lymph nodes were cancerous.....for me that means neck and chest.
Radiation will begin about 4 weeks after my last chemo treatment, so the sooner I can get done with chemo the quicker I can get myself into radiation.
I'm heading back into the Cancer Center this Thursday for my 8th treatment. I'll have scans done next Thursday to see how I'm coming along.....fingers crossed!
One final thing......most of you are aware, but some may not be. My beautiful girlfriend, wonderful mom, a number of my family members and a few of my very good friends are organizing a fundraising event. I've included a link to the Evite below, please take a minute to read. It would be great to see you all there, if possible!
http://www.evite.com/pages/invite/viewInvite.jsp?inviteId=GRRVCAEPTSXUYJRWEHLC&li=iq&src=email&trk=aei6
Monday, August 24, 2009
Catching up
Wow, think its been almost 4 weeks since I last posted, sorry about that, got a lot goin on!
Just to catch everyone up to speed. I'm officially over 50% done with treatments. Scans were taken 3-4 weeks ago to check on my improvement. Doctor told me that all signs of cancer in my neck have completely disappeared, thats great news! I still have cancerous cells in my chest, but those have condensed.
My last treatment was the roughest of the first six. Not sure if it was due to a new nurse administering the chemo, but I had to battle a bout of dry heaves after the first few chemicals were pumped into my system. Its just a really weird feeling not only seeing these drugs being "pushed" into my body, but also feeling it......thats what really creeps me out. And the first drug looks EXACTLY like Fruit Punch Gatorade, yea I've completely cut that out of my hydration schedule for the near short term.
My attitude is still strong and positive, trying to laugh and have as much fun as possible through this. Had a great time at Mitch's bachelor party a few weeks back, then just as much fun this past weekend at his wedding (which turned out great!). Didn't realize how much fun being sober around as many drunks as I was can truly be, haha......thanks for the entertainment guys! For those of you who haven't seen, I decided to trim the hairs on my head. I feel like Andre Agassi with a bald head and HUGE black eyebrows, its a good look, so I've been told! My Susan is so much hotter than his Steffi Graf though, I must pull the look off better.
Treatment #7 is just 3 days away, wish me luck!
Just to catch everyone up to speed. I'm officially over 50% done with treatments. Scans were taken 3-4 weeks ago to check on my improvement. Doctor told me that all signs of cancer in my neck have completely disappeared, thats great news! I still have cancerous cells in my chest, but those have condensed.
My last treatment was the roughest of the first six. Not sure if it was due to a new nurse administering the chemo, but I had to battle a bout of dry heaves after the first few chemicals were pumped into my system. Its just a really weird feeling not only seeing these drugs being "pushed" into my body, but also feeling it......thats what really creeps me out. And the first drug looks EXACTLY like Fruit Punch Gatorade, yea I've completely cut that out of my hydration schedule for the near short term.
My attitude is still strong and positive, trying to laugh and have as much fun as possible through this. Had a great time at Mitch's bachelor party a few weeks back, then just as much fun this past weekend at his wedding (which turned out great!). Didn't realize how much fun being sober around as many drunks as I was can truly be, haha......thanks for the entertainment guys! For those of you who haven't seen, I decided to trim the hairs on my head. I feel like Andre Agassi with a bald head and HUGE black eyebrows, its a good look, so I've been told! My Susan is so much hotter than his Steffi Graf though, I must pull the look off better.
Treatment #7 is just 3 days away, wish me luck!
Monday, July 27, 2009
Scans & Results
Last week (Thursday) I went in for my first set of scans. My oncologist schedules these scans after every 2 months of chemo to see how the treatments are affecting the cancerous cells. The scans took probably a matter of 3-4 hours. I took both a PET scan and a CT scan. Again, the PET scan consists of a glucose matter injected into my system which then travels the the cancerous areas of my body and are highlighted on the scan. The CT scan is just a quick process that detects enlarged or swollen areas of the body.
Didn't think I was going to get results back until my next round of treatments when I meet with my Oncologist, but I received a call from my Doctors nurse the following day (Friday) with results. I was told that both scans showed "significant improvement" on the nodes in my chest!!! They also showed no signs of cancer or swollen nodes in the neck!! Now, personally I have a feeling the nurse may have misinterpreted the results because I can't believe that the nodes in my neck are gone already, I'll make sure to verify this when I meet with Dr Kindwall-Keller this Thursday. Either way, it was a great relief. I catch myself continually asking "is this working?" Its just great to know that the rough days are worth it
Hope everyone's enjoying the summer so far!
Didn't think I was going to get results back until my next round of treatments when I meet with my Oncologist, but I received a call from my Doctors nurse the following day (Friday) with results. I was told that both scans showed "significant improvement" on the nodes in my chest!!! They also showed no signs of cancer or swollen nodes in the neck!! Now, personally I have a feeling the nurse may have misinterpreted the results because I can't believe that the nodes in my neck are gone already, I'll make sure to verify this when I meet with Dr Kindwall-Keller this Thursday. Either way, it was a great relief. I catch myself continually asking "is this working?" Its just great to know that the rough days are worth it
Hope everyone's enjoying the summer so far!
Thursday, July 16, 2009
4th Treatment and CTCA
Had treatment #4 today, actually went smoother than those in the past, no real hold ups. Susan and I were out of there in exactly 3 hours! Thanks for comin along hun! Nothing but old people at the clinic today, kinda sucked, but thats how it goes sometimes.
No new news up to this point, I have a few scans set up for next Thursday (7/23). 2 weeks from today (7/30) we should have an idea of the hopeful progress. I'll obviously keep you all posted.
Think I had my first real bout with "fatigue" this past Friday and wow, it was not fun. 7 days after treatments is when my cell counts will be the lowest (meaning I'm more prone to infection and fatigue), last Friday being the 8th day post treatment. I met up with a few former co-workers (Ern and Rini), had just a couple drinks, came home and went to bed. I woke up at 2am and COULD NOT MOVE MY BODY, it was actually kind of scary. My bro was out and about and Susan was in NY, so I had my mommy come over and take care of me :)......Thanks Mom!! Doctor has been tellin me everyone reacts differently and you'll learn your limitations. Ha, tell ya this much, no more alcohol for this guy, not fun!!! Doc did give me the "go" to play golf though, so after recouperating from Friday night I got out to the course with a few of the guys on Sunday.....it was great finally being somewhat active again! Takin sports from me is like taking losing from Cleveland teams......its almost like a loss of identity!!!!!!!! Hahaha
One final thing I want to make you all aware of. I was watching the Price is Right the other day (honestly, the best part about being sick is being able to watch this show) and a commercial came on about Cancer Treatment Centers of America, (http://www.cancercenter.com/). It peaked my interest so I checked it out.......I was thoroughly impressed!!! If things dont go the way I hope them to at University Hospitals, I'm seriously going to consider heading to one of CTCA's facilities (closest one is in Chicago). Nice part about them is that they will take care of travel arrangements; no airfare costs!!! They also offer different types of consultation like nutrition therapy, naturopathic medicine (no clue what that is, but sounds important), mind-body medicine and spirtual support. I spoke with a representative and he was the coolest, most understanding customer service rep I've ever been in contact with. He's not even a Doctor and he only wanted what was best for me, I was impressed!!! Someone like myself is lucky to be in this region of the country with UH and Cleveland Clinic, but if you or a loved one are in a region where medicine may not be as highly regarded and have been stricken with this setback, PLEASE check out CTCA. They have a handful of facilities throughout the entire nation.
Alright, I just found out today I have the MLB package free on my cable setup, so I'm gonna be a complete recluse for awhile and watch some baseball. Hope everyone has a great weekend!!
No new news up to this point, I have a few scans set up for next Thursday (7/23). 2 weeks from today (7/30) we should have an idea of the hopeful progress. I'll obviously keep you all posted.
Think I had my first real bout with "fatigue" this past Friday and wow, it was not fun. 7 days after treatments is when my cell counts will be the lowest (meaning I'm more prone to infection and fatigue), last Friday being the 8th day post treatment. I met up with a few former co-workers (Ern and Rini), had just a couple drinks, came home and went to bed. I woke up at 2am and COULD NOT MOVE MY BODY, it was actually kind of scary. My bro was out and about and Susan was in NY, so I had my mommy come over and take care of me :)......Thanks Mom!! Doctor has been tellin me everyone reacts differently and you'll learn your limitations. Ha, tell ya this much, no more alcohol for this guy, not fun!!! Doc did give me the "go" to play golf though, so after recouperating from Friday night I got out to the course with a few of the guys on Sunday.....it was great finally being somewhat active again! Takin sports from me is like taking losing from Cleveland teams......its almost like a loss of identity!!!!!!!! Hahaha
One final thing I want to make you all aware of. I was watching the Price is Right the other day (honestly, the best part about being sick is being able to watch this show) and a commercial came on about Cancer Treatment Centers of America, (http://www.cancercenter.com/). It peaked my interest so I checked it out.......I was thoroughly impressed!!! If things dont go the way I hope them to at University Hospitals, I'm seriously going to consider heading to one of CTCA's facilities (closest one is in Chicago). Nice part about them is that they will take care of travel arrangements; no airfare costs!!! They also offer different types of consultation like nutrition therapy, naturopathic medicine (no clue what that is, but sounds important), mind-body medicine and spirtual support. I spoke with a representative and he was the coolest, most understanding customer service rep I've ever been in contact with. He's not even a Doctor and he only wanted what was best for me, I was impressed!!! Someone like myself is lucky to be in this region of the country with UH and Cleveland Clinic, but if you or a loved one are in a region where medicine may not be as highly regarded and have been stricken with this setback, PLEASE check out CTCA. They have a handful of facilities throughout the entire nation.
Alright, I just found out today I have the MLB package free on my cable setup, so I'm gonna be a complete recluse for awhile and watch some baseball. Hope everyone has a great weekend!!
Friday, July 3, 2009
25%!
Just thought about this, but I'm 1/4 of the way done with my chemo treatments, pretty sweet to think about in that sense. Had round #3 yesterday afternoon, unfortunately things got off to a slow start. There was a minor set back with my port and it not allowing blood to flow so they could test it prior to administering chemo. No worries, they shot me up with some more random stuff (sorry I can't remember the names of everything they put in my body, too many to remember, too technical of names anyway!). Oncologist said the nodes should be starting to decrease in size, she felt my neck and mentioned that if felt "softer"......which is certainly a positive! The nurses were awesome yesterday, like usual. I made another 2 friends while in treatment.......a 45 yr-old Oberlin college professor with Non-Hodgkins, and a 75-yr old lady whose had Hodgkins for 2.5 years. Kind of a sad story with her because she has the same type disease I have, but its not supposed to affect old people. Its been a pretty rough go for her, but she's a little fireball, gotta love her for havin such a positive attidue! Her middle-aged daughter called me cute too.....I told her she's welcome back to visit anytime! Haha
Just a quick random story from last weekend too. I was at a Big Fat Greek Wedding downtown, it was just my family invited (no Susan...sorry babe, you know I missed ya). Anyway, I walked over to my table and sat down next to a kid who was completely unfamiliar to me. We got to chatting, he's an Engineer (I recruit Engineers). He's a huge basketball player (I love basketball). He's looking to move to the westside (I'm a westsider for life). And the kicker......he had Hodgkins in 2008!!!! What the hell are the chances, honestly!!!??? Only 8,000 people were diagnosed with this last year, there's less than a .05% chance of me running into another Hodgkins patient!!! He had the same biopsy on his neck and he was on the same chemo treatments I'm currently on. You shoulda seen me, I was as giddy as a Greek in a pastry store. Anyway, I made a new friend and he's healthy as can be. Oh yea, he's 6'6'' and played basketball at Cleveland Hts Highschool......so yea, I recruited him for our bball team, priorities priorities priorities!!!
Also, biopsy on my Thyroid came back negative too, so no cancer there, nice-a!
So right now, I'm just chill-axin (heard that term the other day, thought Id throw that in here). I picked up the guitar for the first time yesterday, think my fingers are too fat, I can't even strum the easiest of chords, ha! Treatments haven't been too bad just yet, hairs are still in tact (somewhat). Susan mentioned my arms are getting big, I assume thats the steroids kickin in. Cool with me, just wish I knew about these back in HS! Hiram College baseball, please......I woulda gone big time baby, you'd see me at the Jake (or Progressive field) every night. Grady's Ladies? Ha, more like Diamond's Dame's!
Alright, I'm out! Got 3 treatments in July, after those I'll officially be halfway through with this crap, wish me luck!! Happy 4th of July to everyone, have a beer for me!!
Just a quick random story from last weekend too. I was at a Big Fat Greek Wedding downtown, it was just my family invited (no Susan...sorry babe, you know I missed ya). Anyway, I walked over to my table and sat down next to a kid who was completely unfamiliar to me. We got to chatting, he's an Engineer (I recruit Engineers). He's a huge basketball player (I love basketball). He's looking to move to the westside (I'm a westsider for life). And the kicker......he had Hodgkins in 2008!!!! What the hell are the chances, honestly!!!??? Only 8,000 people were diagnosed with this last year, there's less than a .05% chance of me running into another Hodgkins patient!!! He had the same biopsy on his neck and he was on the same chemo treatments I'm currently on. You shoulda seen me, I was as giddy as a Greek in a pastry store. Anyway, I made a new friend and he's healthy as can be. Oh yea, he's 6'6'' and played basketball at Cleveland Hts Highschool......so yea, I recruited him for our bball team, priorities priorities priorities!!!
Also, biopsy on my Thyroid came back negative too, so no cancer there, nice-a!
So right now, I'm just chill-axin (heard that term the other day, thought Id throw that in here). I picked up the guitar for the first time yesterday, think my fingers are too fat, I can't even strum the easiest of chords, ha! Treatments haven't been too bad just yet, hairs are still in tact (somewhat). Susan mentioned my arms are getting big, I assume thats the steroids kickin in. Cool with me, just wish I knew about these back in HS! Hiram College baseball, please......I woulda gone big time baby, you'd see me at the Jake (or Progressive field) every night. Grady's Ladies? Ha, more like Diamond's Dame's!
Alright, I'm out! Got 3 treatments in July, after those I'll officially be halfway through with this crap, wish me luck!! Happy 4th of July to everyone, have a beer for me!!
Thursday, June 18, 2009
Round 2
Treatment #2 went really well today. Had a great friend, Mitchell Mann (who most of you probably know), pick me up at 8am. We got to the Ireland Center around 830 and treatments started around 930ish. Honestly, we laughed probably more than we should've in a room where other people were receiving chemo, but it definately didn't feel like I was a patient. Mitch, can't thank you enough bro! We took a sports trivia book to pass the time....Mitch was inferior to me on any ball field (now that I think about it, all of you were, hahahah, JUST KIDDING!). Sorry bud, things aren't any different when it comes to sports knowledge. Thats alright, you make me feel good in down times, thats what friends are for!
*Picture included of the mediport
So, quick catch up, I had ANOTHER biopsy done yesterday (its never ending). Doctors found a couple nodules on my thyroid from a SCAN done 2 weeks ago, both Endocronologist and Oncologist said its completely unrelated to the Lymphoma. Right now this doesn't raise too much concern, thyroid issues run in the family, some of my family members dont even have the body part anymore. We're just doing this for precautionary purposes, keep your fingers crossed. As I've said before, I got enough goin on right now!!
At home right now, waiting for the effects to kick in watchin some Grandma's Boy. After tellin the doctors my reactions to the first round were minimal (aside from the mouth sores), they were pretty shocked. Blood cell count is still normal, but they should be fallin soon. Now begins the "Monk" stage of my life.....consistently washing hands, using hand sanitizers, and wearing those hospital masks around.
Oh yea, on a side note, and Jay I hope you dont mind. Today I get a call from one of my strong crutches throughout this process. Old friend from college, Jay, was diagnosed with Hodgkins about 3 years ago. He beat this bad boy in a matter of 6 months and has been healthy for the last 2 years. Well, as I'm receiving the red drug (yea, orange pee producer), he calls me out of the blue to tell me his radiologist thinks his Lymphoma has come back. For those of you who may know Jay, should you decide to pray, please keep him in mind. Should he need treatment, he and I will be like "chemo kin". He's a strong SOB, I'm gonna need him through this.
Final thing, did stop up at the Greek Fest today, had to get me one of them infamous Gyrrrros!! Not sure how much longer I'm gonna have my taste buds, gotta utilize 'em while I got 'em!
Hope I didnt bore too much this time, have a great Father's Day weekend!
So, quick catch up, I had ANOTHER biopsy done yesterday (its never ending). Doctors found a couple nodules on my thyroid from a SCAN done 2 weeks ago, both Endocronologist and Oncologist said its completely unrelated to the Lymphoma. Right now this doesn't raise too much concern, thyroid issues run in the family, some of my family members dont even have the body part anymore. We're just doing this for precautionary purposes, keep your fingers crossed. As I've said before, I got enough goin on right now!!
At home right now, waiting for the effects to kick in watchin some Grandma's Boy. After tellin the doctors my reactions to the first round were minimal (aside from the mouth sores), they were pretty shocked. Blood cell count is still normal, but they should be fallin soon. Now begins the "Monk" stage of my life.....consistently washing hands, using hand sanitizers, and wearing those hospital masks around.
Oh yea, on a side note, and Jay I hope you dont mind. Today I get a call from one of my strong crutches throughout this process. Old friend from college, Jay, was diagnosed with Hodgkins about 3 years ago. He beat this bad boy in a matter of 6 months and has been healthy for the last 2 years. Well, as I'm receiving the red drug (yea, orange pee producer), he calls me out of the blue to tell me his radiologist thinks his Lymphoma has come back. For those of you who may know Jay, should you decide to pray, please keep him in mind. Should he need treatment, he and I will be like "chemo kin". He's a strong SOB, I'm gonna need him through this.
Final thing, did stop up at the Greek Fest today, had to get me one of them infamous Gyrrrros!! Not sure how much longer I'm gonna have my taste buds, gotta utilize 'em while I got 'em!
Hope I didnt bore too much this time, have a great Father's Day weekend!
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