Well, without jinxing myself, the dose reduction has made a huge difference in symptoms. No jaw pain (yet), no "little c" (yet)... Just really, REALLY tired. I'm working from home today and have a few things that need to get done, but they're going to have to come in spurts - I see my lunch involving a nap this afternoon.
Oh, and didn't get any nausea this time around either. The neurotic in me wonders if they gave me 10% of my previous dosing, not a 10% reduction, ha ha.
Here's hoping everyone has a happy, HEALTHY new year!
Monday, December 31, 2007
Saturday, December 29, 2007
This Disease Sucks
I just found out today on the support forum I visit that one of the bravest women on there is not doing well, and may likely leave her loving husband and four kids very soon. Nothing worked for them, none of the treatments available.
"Good cancer" my ass.
"Good cancer" my ass.
Thursday, December 27, 2007
Treatment 5 - A Long Post
Hi all, this is going to be a long one, so grab a coffee and a comfy chair. I want to go over some things that happened today at the Cancer Center, as well as give everyone a quick tour of the treatment and my bald head (for everyone who hasn't seen me since we started).
For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:
OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.
So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and
I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:
We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.
On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.
We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.
While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.
OK, on to the tour of the Paoli Cancer Center treatment process!
First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.
Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13
days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.
Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.
They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.
We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact,
Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.
Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.
For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:
OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.
So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and
I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:- Your "ideal" body weight: The "ideal" weight based upon height. This would (for me, being big) result in the lowest amount of chemo drugs - By a long shot.
- Your real weight, to a maximum of 2.0 mass to body surface area (I think). This is a more complicated formula that takes your weight into account, but has a ceiling.
- Your real weight. This results in the maximum dosing (for someone big like me).
We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.
On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.
We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.
While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.
OK, on to the tour of the Paoli Cancer Center treatment process!
First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.
Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13
days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.
They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.
We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact,
Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.
Friday, December 21, 2007
Sorry, I've Been Slackin...
I haven't posted in a while, generally because there hasn't been anything interesting to post! Symptoms are the same ol stuff, dealing with it the same ol way. I think we're pretty much in a routine at this point.
One thing that I'm watching though -- I'm noticing myself getting a little out of breath relatively easily (playing with Steven for a few minutes, etc.). It may be nothing, it may be just the effects of treatment (I am getting more tired). The other thing it could be is Bleomicin toxicity; Bleo is one of the 4 chemo drugs given to me. Its not at all uncommon for it to happen, and it can damage the lungs if not caught in time. I'll let the doc know, and she can decide if she wants me in for another pulmonary test. My lungs are crystal clear, so I'm still learning towards 1 or 2.
I decided to not go to the Hodgkin's support forum I visit for a little bit (a couple of weeks at least). Its nothing in particular; While I know the vast majority of people recover from this and move on, there's a large population of relapsers there which, for some goofball reason, scares me right now. I don't want to think of relapse, not right now. And that's nothing against them (of course) -- They are hardcore cancer killers, and most have awesome experiences following SCT (the next step after relapse). I just don't want to think about that, because its putting ideas in my head; Its purely selfish reasons, but it is what it is. Suzanne is still checking in though and keeping me in the loop.
My Neulasta fun (aka all-over bone pain, yeeha) should be ending by tomorrow, and I'm looking forward to an awesome Christmas week. If I don't post again before Tx5, everyone have a merry Christmas!!
One thing that I'm watching though -- I'm noticing myself getting a little out of breath relatively easily (playing with Steven for a few minutes, etc.). It may be nothing, it may be just the effects of treatment (I am getting more tired). The other thing it could be is Bleomicin toxicity; Bleo is one of the 4 chemo drugs given to me. Its not at all uncommon for it to happen, and it can damage the lungs if not caught in time. I'll let the doc know, and she can decide if she wants me in for another pulmonary test. My lungs are crystal clear, so I'm still learning towards 1 or 2.
I decided to not go to the Hodgkin's support forum I visit for a little bit (a couple of weeks at least). Its nothing in particular; While I know the vast majority of people recover from this and move on, there's a large population of relapsers there which, for some goofball reason, scares me right now. I don't want to think of relapse, not right now. And that's nothing against them (of course) -- They are hardcore cancer killers, and most have awesome experiences following SCT (the next step after relapse). I just don't want to think about that, because its putting ideas in my head; Its purely selfish reasons, but it is what it is. Suzanne is still checking in though and keeping me in the loop.
My Neulasta fun (aka all-over bone pain, yeeha) should be ending by tomorrow, and I'm looking forward to an awesome Christmas week. If I don't post again before Tx5, everyone have a merry Christmas!!
Sunday, December 16, 2007
Dear Hodge...
Dear Hodge, here's why I'm going to beat you: I'm going to redo things with my kids like below, and you're not going to stop me.
May you die a quick and complete death.
Love,
Steve
(For those interested, first pic is from the beach at Duck, Outer Banks North Carolina. Second picture is on top of a trail in Acadia National Park, Maine)
May you die a quick and complete death.
Love,
Steve
(For those interested, first pic is from the beach at Duck, Outer Banks North Carolina. Second picture is on top of a trail in Acadia National Park, Maine)
Thursday, December 13, 2007
Treatment 4 - Cycle 2 Down, and a Third of the Way to the Finish Line!!!
OK, just had my next treatment. Feeling funky (as usual), and took the IV Ativan there for my stomach. Post-treatment 3 was the first time I actually experienced a little queasyness. Trying to nip that in the bud.
So, looks like the side effects were much better this time round when we actually WORKED on them, ha ha. White counts are higher than the last tx (up in the 8's), so that's good too.
Downer: I chipped the crown on my one back molar. I had a root canal a few years ago, and the crown's porcelain chipped a big chunk. Its one of the gold with porcelain over top ones, so I don't think I'm in trouble as long as the metal's on, but even so -- You can't see the metal, there's still porcelain over top.
My onc wants me going nowhere near a dentist until we're done, due to the risks of infection. As its still fully covered with porcelain, not loose, and not causing pain, I tend to agree with him.
Speaking of, Dr. Dabrow is an excellent oncologist (he's also a blood cancer guy), but he's more the research-seeming type than the teacher, which is what we love about Dr. Szarka. Then there's the jokes - I think Dr. Dabrow is definitely the straight man to Dr. Szarka's comedy routine. Still, I feel like I have some serious care at this place.
So, looks like the side effects were much better this time round when we actually WORKED on them, ha ha. White counts are higher than the last tx (up in the 8's), so that's good too.
Downer: I chipped the crown on my one back molar. I had a root canal a few years ago, and the crown's porcelain chipped a big chunk. Its one of the gold with porcelain over top ones, so I don't think I'm in trouble as long as the metal's on, but even so -- You can't see the metal, there's still porcelain over top.
My onc wants me going nowhere near a dentist until we're done, due to the risks of infection. As its still fully covered with porcelain, not loose, and not causing pain, I tend to agree with him.
Speaking of, Dr. Dabrow is an excellent oncologist (he's also a blood cancer guy), but he's more the research-seeming type than the teacher, which is what we love about Dr. Szarka. Then there's the jokes - I think Dr. Dabrow is definitely the straight man to Dr. Szarka's comedy routine. Still, I feel like I have some serious care at this place.
Monday, December 10, 2007
Yes, I'm Still Here
Sorry about the lack of posts. I've just been... Good. I feel great, which of course means its time for another treatment. I have lots to go over with Dr. Dabrow on Thursday though:
- There's a major shortage of the isotope used for PET scans, which check to see if there's any living cancer cells left in a body. Seems the brain trust that is our medical industry and government decided that having a single source for the stuff -- a 50 year old reactor in Canada -- Was a fine idea. Well, said reactor's been down a while for repairs, and the supply has dwindled out. Here's hoping we're good for my February scan.
- More importantly though, I'd like to get his opinion about a Phase 2 trial going on down at John Hopkins U Hospital in Baltimore. Seems they have a VACCINE that fights Hodgkins cells. No lie. Its for folks who complete initial treatment to clear out the cancer, and will help train your body to fight off any cells that decide they might want to make a comeback. It sounds freakin awesome; While I have a 85-90+ percent chance this isn't coming back, every little bit more is great in my eyes. I'll have the app in tomorrow, and if I'm selected I'd get the vaccine sometime next August (once all my treatments are done).
Thursday, December 6, 2007
We Cured the Big C!!!
No, not cancer (yet). Constipation.
The plan of action my oncologist put me on seems to have done the trick. I'm not having horrific gut pains, so I think I'm back to "Good Week / Bad Week" (yes friends, that's a victory in my book).
My plan of action was SenoKot S, two pills every day following treatment (one the night before). When things started to "seem" like they were getting stopped up, Milk of Magnesia on top of the SenoKot kept things going.
Yeah, its gross. Welcome to my world. However, if one other Hodger reads this before treatments and gets to avoid the agony, its worth it.
My guts still feel a little off, but I'll take it (and it could be the SenoKot). Other than that, I can't shake the tiredness. I don't know how to describe this. The constant sleeping is over, but I can't seem to just "wake up". I'm completely out of it.
I'm home again today (working, but home). I had to take two days off at the beginning of the week, and two days working from home. If this keeps up, I may have to consider disability. That would upset me, as we've been evaluating SQL Server Analysis Services, and the geek in me is having some fun with that.
Speaking of, I got my temporary handicap placard for the car. Its bright red, and good through May (i.e. radiation). Do I need it most days? Nah; At least not so far. However, for a day or so after treatment? Its amazing how weak you can feel.
On the same token, I spoke to our parish priest about mass and communion. Apparently I qualify for home visits (since church is pretty crowded, and I'm supposed to avoid crowds). I get to have mass delivered, hold the anchovies.
Dr. Szarka will be off on vacation for my next treatment December 13th, so Dr. Dabrow (the head of the Cancer Center) will get to see me. Lucky him, ha ha.
P.S. And what the hell, I've had some SERIOUS bloodshot eyes the last few days. It looks like I've been smoking some sort of alternative medicine...
The plan of action my oncologist put me on seems to have done the trick. I'm not having horrific gut pains, so I think I'm back to "Good Week / Bad Week" (yes friends, that's a victory in my book).
My plan of action was SenoKot S, two pills every day following treatment (one the night before). When things started to "seem" like they were getting stopped up, Milk of Magnesia on top of the SenoKot kept things going.
Yeah, its gross. Welcome to my world. However, if one other Hodger reads this before treatments and gets to avoid the agony, its worth it.
My guts still feel a little off, but I'll take it (and it could be the SenoKot). Other than that, I can't shake the tiredness. I don't know how to describe this. The constant sleeping is over, but I can't seem to just "wake up". I'm completely out of it.
I'm home again today (working, but home). I had to take two days off at the beginning of the week, and two days working from home. If this keeps up, I may have to consider disability. That would upset me, as we've been evaluating SQL Server Analysis Services, and the geek in me is having some fun with that.
Speaking of, I got my temporary handicap placard for the car. Its bright red, and good through May (i.e. radiation). Do I need it most days? Nah; At least not so far. However, for a day or so after treatment? Its amazing how weak you can feel.
On the same token, I spoke to our parish priest about mass and communion. Apparently I qualify for home visits (since church is pretty crowded, and I'm supposed to avoid crowds). I get to have mass delivered, hold the anchovies.
Dr. Szarka will be off on vacation for my next treatment December 13th, so Dr. Dabrow (the head of the Cancer Center) will get to see me. Lucky him, ha ha.
P.S. And what the hell, I've had some SERIOUS bloodshot eyes the last few days. It looks like I've been smoking some sort of alternative medicine...
Wednesday, December 5, 2007
Hibernation
Wow, the tiredness has finally arrived. Up to this point, I had about 2 days of tiredness, then was back to normal. This treatment, no such luck. I slept literally all of Monday and Tuesday (Days 4 and 5) away, and I'm working from home today (glad I am - I'm getting really tired again). I can see how this will be frustrating.
Now, partially its my own fault. Normally we plan the weekend after chemo to be free, so I can sleep like crazy. Unfortunately, we made a bunch of plans this past weekend and while I was up and running around, I think it just delayed the inevitable. Lesson learned, we'll make sure the weekend is for sleeping from now on!
On the other symptoms side, I think we're getting the hang of things. The jaw stuff is pretty much gone (just some residual dull aching), and no gut pains yet. The Senokot and Milk of Mag is taking care of business.
I made a big mistake in reading a bunch of articles online too. I read something about the 15 year disease-free survival rate being an abysmal 60-some percent. That doesn't jive with the 85 percent cure rate, but hey leave it to me to find some fun reading. I have 13 days every two weeks where I am completely confident in beating this thing, then 1 day where I let a little doubt creep in. Thirteen days where I'm excited since my treatments are down to single digits, and one day where I'm like "Oh s**t, I have 9 more of these mofo's left?".
I HATE feeling this weak. I swear, I'm getting back into powerlifting when this is done, damn the waistline.
Oh, and beyond that: We're looking for a dog. The kids have been begging, and its supposed to actually be good for me. As long as Suzanne and Sara are willing to do the cleanup for now, why not. I want a bulldog if we can, so ugly they're cute.
Now, partially its my own fault. Normally we plan the weekend after chemo to be free, so I can sleep like crazy. Unfortunately, we made a bunch of plans this past weekend and while I was up and running around, I think it just delayed the inevitable. Lesson learned, we'll make sure the weekend is for sleeping from now on!
On the other symptoms side, I think we're getting the hang of things. The jaw stuff is pretty much gone (just some residual dull aching), and no gut pains yet. The Senokot and Milk of Mag is taking care of business.
I made a big mistake in reading a bunch of articles online too. I read something about the 15 year disease-free survival rate being an abysmal 60-some percent. That doesn't jive with the 85 percent cure rate, but hey leave it to me to find some fun reading. I have 13 days every two weeks where I am completely confident in beating this thing, then 1 day where I let a little doubt creep in. Thirteen days where I'm excited since my treatments are down to single digits, and one day where I'm like "Oh s**t, I have 9 more of these mofo's left?".
I HATE feeling this weak. I swear, I'm getting back into powerlifting when this is done, damn the waistline.
Oh, and beyond that: We're looking for a dog. The kids have been begging, and its supposed to actually be good for me. As long as Suzanne and Sara are willing to do the cleanup for now, why not. I want a bulldog if we can, so ugly they're cute.
Sunday, December 2, 2007
Getting Into the Routine
I don't know if its good or not, but I think I'm getting into the rhythm of this stuff. My mouth is starting to hurt a little (Day 3, makes sense), but not as bad as last time. I'm being proactive on the constipation crap (sorry, pun intended), and haven't had any issues yet. I should have my steroid crash tomorrow, be down for a night, then bounce back happily with my jaw pain. Its like having a school schedule - You know what you have coming up!
Only thing throwing me off this time is I don't have anything to judge improvement anymore -- Now that my neck is "normal", its hard to tell if the stuff is working. However, I emphatically state I prefer this to having something come back to let me gauge progress, haha.
I definitely had some queasiness this go-round, I'll have to keep an eye on that. Its partly my fault, I forgot to take my Emend and Kytril first thing in the morning. Once I took them, about a 1/2 hour later I was golden.
My son's 3rd birthday is tomorrow, so we're celebrating today with the local family and friends, then heading to my parents house next weekend for the Jersey folks. Given I'm in hibernation mode, I'm hoping I stay up for it, but I think I'll be fine (had a nice long sleep last night).
Oh, and we scored the Wii, so more good news over the weekend.
Only thing throwing me off this time is I don't have anything to judge improvement anymore -- Now that my neck is "normal", its hard to tell if the stuff is working. However, I emphatically state I prefer this to having something come back to let me gauge progress, haha.
I definitely had some queasiness this go-round, I'll have to keep an eye on that. Its partly my fault, I forgot to take my Emend and Kytril first thing in the morning. Once I took them, about a 1/2 hour later I was golden.
My son's 3rd birthday is tomorrow, so we're celebrating today with the local family and friends, then heading to my parents house next weekend for the Jersey folks. Given I'm in hibernation mode, I'm hoping I stay up for it, but I think I'll be fine (had a nice long sleep last night).
Oh, and we scored the Wii, so more good news over the weekend.
Thursday, November 29, 2007
Treatment 3 - Quarter of the Way Done!
This week has been chock full of good news. On the medical front, my oncologist confirmed that she can no longer feel any nodes on my neck. At all. Nothing. Nada. That friggin rocks. She did feel a little something on my scar, but it seemed too surface to be a node (she believes) and thinks its definitely scar tissue from my incision.
There was no mention of the dreaded "dose reduction", and things went pretty routine. The only real new info was that I'm actually not getting re-scans done until Cycle 4 is done, not Treatment 4. That means rather than getting my PET scan before Christmas, we're not going to see how the chest is until early March. I'm cool with this, as the neck is pretty good proof SOMETHING good is happening, and my cough being gone definitely would correspond to good news on the chesty front.
I'm a little tired, felt some VERY minor nausea (for the first time), but other than that feeling pretty good. I also have some jaw pain, but I actually got that BEFORE treatment; I wonder if I'm clenching and grinding at night - That could be the culprit as much as the Vincristine. In any event, I got stuff for that, haha.
Looking forward to seeing everyone at Christmas. I'll get treatment the week before (so eating may not be as... Forceful... As Thanksgiving), but I'll be in good spirits.
There was no mention of the dreaded "dose reduction", and things went pretty routine. The only real new info was that I'm actually not getting re-scans done until Cycle 4 is done, not Treatment 4. That means rather than getting my PET scan before Christmas, we're not going to see how the chest is until early March. I'm cool with this, as the neck is pretty good proof SOMETHING good is happening, and my cough being gone definitely would correspond to good news on the chesty front.
I'm a little tired, felt some VERY minor nausea (for the first time), but other than that feeling pretty good. I also have some jaw pain, but I actually got that BEFORE treatment; I wonder if I'm clenching and grinding at night - That could be the culprit as much as the Vincristine. In any event, I got stuff for that, haha.
Looking forward to seeing everyone at Christmas. I'll get treatment the week before (so eating may not be as... Forceful... As Thanksgiving), but I'll be in good spirits.
Sunday, November 25, 2007
What a Weekend
Wow, this weekend sucked.
Thursday night, after getting home from Thanksgiving dinner, my son Steven started projectile vomiting. Huge mess, including our brand new sectional sofa. Wouldn't eat on Saturday, but then neither would I, as apparently I caught the same thing. My entire lower GI felt on fire. I got the other end of things as an issue, and couldnt (wouldn't) eat or drink anything.
The scary part was around 7PM, when we checked my temperature and I had a fever of 100.8 (over the "magic" number of 100.4). Called the on-call doc, and he said to take some Tylenol and call back if it goes over 101.5. Given what happened after treatment 1, we have no idea if I'm neutropenic or not so it was a bit nerve-wracking. Happily, following Tylenol and since the temp has gone down, and my gut problems have subsided (although I still have some residual pain).
Ugh, so much for a "good" week before Thursday's next treatment. We stop in tomorrow morning to make sure I'm not neutropenic (before I go to work), then hopefully get treatment 3 on Thursday.
On the bright side, my collarbones and neck (both sides) now appear "normal". Another good sign.
Thursday night, after getting home from Thanksgiving dinner, my son Steven started projectile vomiting. Huge mess, including our brand new sectional sofa. Wouldn't eat on Saturday, but then neither would I, as apparently I caught the same thing. My entire lower GI felt on fire. I got the other end of things as an issue, and couldnt (wouldn't) eat or drink anything.
The scary part was around 7PM, when we checked my temperature and I had a fever of 100.8 (over the "magic" number of 100.4). Called the on-call doc, and he said to take some Tylenol and call back if it goes over 101.5. Given what happened after treatment 1, we have no idea if I'm neutropenic or not so it was a bit nerve-wracking. Happily, following Tylenol and since the temp has gone down, and my gut problems have subsided (although I still have some residual pain).
Ugh, so much for a "good" week before Thursday's next treatment. We stop in tomorrow morning to make sure I'm not neutropenic (before I go to work), then hopefully get treatment 3 on Thursday.
On the bright side, my collarbones and neck (both sides) now appear "normal". Another good sign.
Friday, November 23, 2007
Someone Please Send Nintendo a Few MBAs...
Seriously. How the hell could they have not been prepared for this holiday season? Once again, the Wii is damn near impossible to find. Now with my lovely cancer treatments, I can't hang around crowds at 4AM in freezing weather to try and get my hands on one.
Its actually good exercise. We want to get one for the kids. However, the only way to get one online is if you pay off unscrupulous vendors on Amazon (charging over $500 for a $280 retail product), or Ebay (again, same prices but by unscrupulous individuals this time). Walmart (the kingdom of cheap) had them, but only if you bought them in a $700 package: They sold out Thursday night too (not that I planned to spend anywhere near that).
I blame Nintendo - Wrote them a letter in fact on the subject. Anyway, if any family / family friends see this and stumble upon one (the console system, the sub-$300 one), feel free to grab it and give me a call.
On the health side, doing well with the GI, got a couple mouth sores (another typical symptom) that aren't too bad. Really just back to normal and waiting for tx 3.
Its actually good exercise. We want to get one for the kids. However, the only way to get one online is if you pay off unscrupulous vendors on Amazon (charging over $500 for a $280 retail product), or Ebay (again, same prices but by unscrupulous individuals this time). Walmart (the kingdom of cheap) had them, but only if you bought them in a $700 package: They sold out Thursday night too (not that I planned to spend anywhere near that).
I blame Nintendo - Wrote them a letter in fact on the subject. Anyway, if any family / family friends see this and stumble upon one (the console system, the sub-$300 one), feel free to grab it and give me a call.
On the health side, doing well with the GI, got a couple mouth sores (another typical symptom) that aren't too bad. Really just back to normal and waiting for tx 3.
Thursday, November 22, 2007
Happy Thanksgiving All!!!
Happy Thanksgiving! For immediate starters, I'm giving thanks that my gut issues appear to finally be resolved - I'll have a week or normalcy it seems. Other than that, we all feel good, got the lists for Santa together for the kids, and our hunt for the elusive Wii is on.
Really looking forward to our next treatment, mainly because I want to talk to my onc about a lot of things. In the meantime, going to enjoy turkey (but only so much - Suzanne won't have me getting sick again), bring home a ton of leftovers, and get some quality bread for sammiches over the weekend!!
As shitty as this stuff is, I have a lot to be thankful to God for. The rest of my family is well, I'm feeling better (and we see some more reduction in my neck), and we're happy. We caught this early, treatments appear to be working... What more could one ask other than a miraculous cure?
Have fun today, everyone!
Really looking forward to our next treatment, mainly because I want to talk to my onc about a lot of things. In the meantime, going to enjoy turkey (but only so much - Suzanne won't have me getting sick again), bring home a ton of leftovers, and get some quality bread for sammiches over the weekend!!
As shitty as this stuff is, I have a lot to be thankful to God for. The rest of my family is well, I'm feeling better (and we see some more reduction in my neck), and we're happy. We caught this early, treatments appear to be working... What more could one ask other than a miraculous cure?
Have fun today, everyone!
Wednesday, November 21, 2007
Dose Reductions?!?
Been an interesting 48 hours.
First off, my gut was killing me the last couple days. I've been trying everything to get it gone, but no joy. I called my oncologist's office yesterday and we went over some other over the counter stuff that should help get me "regular". I took Milk of Magnesia and SenoKot last night. The dam has burst, but still having abdominal pain (which could just be residual - it doesn't feel as bad).
My concern is my oncologist brought up possibly reducing my chemo dose again. I feel like crap, and I still have 5 cycles to go - I know this. But dammit I don't want to do anything that reduces my chances of getting rid of this thing. The fact that I'm only taking over the counter crap so far for the symptoms makes me wonder why we arent trying to be more agressive with the symptoms FIRST.
I love my oncologist, she's great. But she's going to need to do some serious convincing here. A lot of other Hodgkin's Survivors I spoke with are incredulous that a dose reduction would even be considered yet (and particularly for these kind of symptoms).
First off, my gut was killing me the last couple days. I've been trying everything to get it gone, but no joy. I called my oncologist's office yesterday and we went over some other over the counter stuff that should help get me "regular". I took Milk of Magnesia and SenoKot last night. The dam has burst, but still having abdominal pain (which could just be residual - it doesn't feel as bad).
My concern is my oncologist brought up possibly reducing my chemo dose again. I feel like crap, and I still have 5 cycles to go - I know this. But dammit I don't want to do anything that reduces my chances of getting rid of this thing. The fact that I'm only taking over the counter crap so far for the symptoms makes me wonder why we arent trying to be more agressive with the symptoms FIRST.
I love my oncologist, she's great. But she's going to need to do some serious convincing here. A lot of other Hodgkin's Survivors I spoke with are incredulous that a dose reduction would even be considered yet (and particularly for these kind of symptoms).
Monday, November 19, 2007
Day 7 from Treatment
Well, we're a week out, and unfortunately I'm hurting something fierce. My gut is killing me - It hurt a little earlier, and Dumb Ass (that's me) decides that given I'm home late, a run to McDonalds should be fine... Yeahhhh, greasy food would go down nice on my chemo'ed gut.
Damn it hurts. Tack on some bone pain (from the Neulasta I think) and Day 7 has been a real blast. Time for bed and hoping tomorrow is better.
Damn it hurts. Tack on some bone pain (from the Neulasta I think) and Day 7 has been a real blast. Time for bed and hoping tomorrow is better.
Sunday, November 18, 2007
Almost Normal... But Not Yet!
A little discouraging news today, loyal readers. Nothing bad with regards to treatment not working or anything like that, but the symptoms are definitely taking longer to get rid of. I haven't really compiled a list yet, but here they are (in descending order of "problem"):
The other question I'm going to bring up to my oncologist is WHY its chemo then radiation. They give you a month off between chemo and rads; What's keeping a few of the Hodge cells from travelling outside the radiation field? Wouldn't it make better sense to have a few extra cycles of chemo AFTER radiation, just in case? While I'm not trying to add extra months to treatment, I also want every chance that this thing won't return.
OK, enough about treatment. For the first time in a few weeks, we got out to breakfast with my brother in law's family. Normally its breakfast before or after church, but church probably isn't the safest place for me presently (days 7-10 are supposed to be when your white counts are lowest). As for breakfast, if I can go to work tomorrow, I figure I can go to the restaurant.
Nudy's Restaurant is a small chain (3 restaurants) with probably the best breakfasts out by where we are. I downed a huge breakfast burrito (did I mention I'm not having nausea problems, ha ha). We give them problems as we have to seat 8, but they know we're regulars now.
My next treatment is still a week and a half away, so I'm hoping things will be great for Thanksgiving. Getting Hodgkin's or not, I have a lot to be thankful for. I'm getting treatment, the treatment appears to be working, and we caught this thing early. The rest of my family is healthy, my work is still going strong even through chemo, and what I have is something that is cured for the vast majority of people. This, in an odd way, might even be a blessing -- My priorities were screwed up, a wake up call that gives me a chance to change that around is a good thing. I just wish my counts would allow me to go to church without risk.
- Jaw / tooth / mouth / throat pain. This is easily the worst part of the chemo - Not as sharp as the Neupogen was, but it feels like how I felt following my wisdom teeth removal for five days every other week. This one starts about 48 hours after treatment, and goes for about five days. Right now, its almost gone (thank God). Percocet barely takes the edge off. This will be one I'll be talking to the doc about next week.
- Constipation. Understand, I've never really had constipation. I can crap like Big Ben rings in the hours (sorry for that visual, but wanted to explain myself). I now essentially get a traffic jam in my gut for about a week, and it hurts. I've tried Colace, Metamucil, some nasty sodium drink the pharmacist recommended... Its hard to go. This will last for another few days, and then I'll be going regularly again for a week. Another one that will be getting a review by Dr. Szarka.
- Weakness / dizziness. The day after treatment I was awake, but very, very weak. Today, I thought I was great but felt a little dizzy while out. May be from the lengthy hibernation time I've had the last few days, but we will see -- This is a new one to treatment 2.
- Tiredness. This is the grand standard of chemo side effects. Its hard to describe, as there are different "tired" feelings. A few days after treatment, its hibernation tired - I just sleep and sleep. Other days, it just feels like I'm tired earlier than I normally would be at night.
- Neuropathy. This is a neat one, ha ha. The meds I'm on can do some odd things to the nerve endings in your appendages, so I've had some numbness in a few of my fingertips. Relatively mild, and its not overly bothersome. Also, it went away before treatment 2, which is a good thing.
- Doubt / Depression / Mental. Huh? What? Well, this one really only happens for two days -- Days 3 & 4 -- When my steroid from the treatment day wears off. I just get feelings like what if the treatment wont work, etc. etc. I will now refer to them as the Pity Party Days.
- Pain in my port shoulder. I'm not sure this one is related to treatment or not. About a year ago, I got a shot of cortizone in my left shoulder due to some pain I was having. It started hurting again in the midst of treatment 1. The orthopedic guy said I might need another shot someday, so it may just be wonderful timing.
- Hair loss. I'm shedding like a family pet. My darling wife Suzanne is at the point where she WANTS my head shaved, as she's the one getting to vacuum the couch.
The other question I'm going to bring up to my oncologist is WHY its chemo then radiation. They give you a month off between chemo and rads; What's keeping a few of the Hodge cells from travelling outside the radiation field? Wouldn't it make better sense to have a few extra cycles of chemo AFTER radiation, just in case? While I'm not trying to add extra months to treatment, I also want every chance that this thing won't return.
OK, enough about treatment. For the first time in a few weeks, we got out to breakfast with my brother in law's family. Normally its breakfast before or after church, but church probably isn't the safest place for me presently (days 7-10 are supposed to be when your white counts are lowest). As for breakfast, if I can go to work tomorrow, I figure I can go to the restaurant.
Nudy's Restaurant is a small chain (3 restaurants) with probably the best breakfasts out by where we are. I downed a huge breakfast burrito (did I mention I'm not having nausea problems, ha ha). We give them problems as we have to seat 8, but they know we're regulars now.
My next treatment is still a week and a half away, so I'm hoping things will be great for Thanksgiving. Getting Hodgkin's or not, I have a lot to be thankful for. I'm getting treatment, the treatment appears to be working, and we caught this thing early. The rest of my family is healthy, my work is still going strong even through chemo, and what I have is something that is cured for the vast majority of people. This, in an odd way, might even be a blessing -- My priorities were screwed up, a wake up call that gives me a chance to change that around is a good thing. I just wish my counts would allow me to go to church without risk.
Friday, November 16, 2007
Back to Work, Slacker!
Well, following hibernation yesterday, I was back to work today, quite happy and feeling pretty good. The jaw / mouth pain is about all I'm experiencing thus far - For some reason, Neulasta isn't giving me bone pain (yet). Perhaps my bones felt I suffered enough when I treated them to Neupogen. Remind me to send them a thank you note.
And also on the happy side of things, my "burn" is back in my chest in neck - The fun feeling caused by inflammation of millions upon millions of evil cancer cells dying. I LOVE that feeling.
And also on the happy side of things, my "burn" is back in my chest in neck - The fun feeling caused by inflammation of millions upon millions of evil cancer cells dying. I LOVE that feeling.
Thursday, November 15, 2007
Hibernation Over!
Well, I crashed out last night, and woke up sometime into today. The good news is the post-treatment sleepies is apparently over. Treatment 2 isn't too bad thus far (just inconvenient about when in the week it happened). I'm getting the mouth pain and jaw pain still unfortunately, that's probably the worst part of treatments.
Still... Thanksgiving is now in an off-week, so guess who is chowing down on some turkey next week - Yeahhhhhh.
Still... Thanksgiving is now in an off-week, so guess who is chowing down on some turkey next week - Yeahhhhhh.
Wednesday, November 14, 2007
Ugh....
I ended up having to work from home today. I wasn't happy with that. Even with all of this stuff going on, I still care about my job and I don't like not being in the office.
Worse yet, I really started to crash this afternoon, and if it continues I may just have to be out (never mind working) tomorrow. I so hope my numbers stay up so I can do treatments on Thursdays again, I don't like missing this much work.
Whinefest over.
Worse yet, I really started to crash this afternoon, and if it continues I may just have to be out (never mind working) tomorrow. I so hope my numbers stay up so I can do treatments on Thursdays again, I don't like missing this much work.
Whinefest over.
Tuesday, November 13, 2007
Missing... One Pair of Functioning Legs
Well, treatments appear to have their own set of odd things. The good news so far on this one is I'm not doing the hibernation thing, and mentally I'm feeling pretty good (although a little tired).
However, I'm weak. Weak as in climbing the stairs (which I usually take 2 at a pop) sucks at the moment. This MAY not be different than last time, as I was pretty much asleep so wouldnt really know.
No major complaints thus far, but my Neulasta fun should start tomorrow - Don't want to get my hopes up too high!
However, I'm weak. Weak as in climbing the stairs (which I usually take 2 at a pop) sucks at the moment. This MAY not be different than last time, as I was pretty much asleep so wouldnt really know.
No major complaints thus far, but my Neulasta fun should start tomorrow - Don't want to get my hopes up too high!
Monday, November 12, 2007
Treatment 2: That Was Easy
Total White Blood Cell Counts: 2.1 Friday, 27 Today
Total Neutrophil Counts: 0.3 Friday (ugh), 22 Today
Them there bones did good, give em a night off. Well, one night -- Until the Neulasta kicks in so we can avoid boy-in-the-bubble-itis again. May not work, but at that points its definite that I'm getting too much chemo and they will reduce the dose a bit (no risk, as that would confirm I really am getting too much).
Treatment 2 went well physically, and I feel better than I did after 1. However, it went a few hours extra: Apparently a kink got into the tube from the Decarbazine bag, under the nice brown bag they put it under. So, the extra bag of saline kicked in on a slow drip. An hour later, they stopped by to check and noticed the bag was still full, and the kink. I picked on my nurse (in fun) about the extra saline, peeing like a racehorse, and how I'll hold it over her. She offered me a cupcake, needless to say I told her it will take much more than that (laughing of course, as she was). The nurses at the Cancer Center are friggin awesome.
So, just a matter of waiting to see what symptoms I get this round, but so far its better than 1. We can only hope!
Sunday, November 11, 2007
Hair Today, Gone Tomorrow
Hello faithful readers! Well, the fun has started -- My hair has started coming out. A couple days ago, my body hair started first. Annoying, but I could live with that. However, this weekend I started getting patches on my head where hair is definitely coming out FAR too easy. As an added bonus, my eyebrows are also having fall-out-itis, so more than likely I'll be going full-on hairless.
Wait, I mean aerodynamic. Hairless sounds odd, but aerodynamic... Yeah, I'm just evolved, that's it... *whistles innocently*
The neupogen bone pain has been manageable with Percocet, but I'm looking forward to getting off of it. I also picked up a stuffy nose over the weekend; Not unusual given I'm in a house full of sick people! Here's looking forward to treatment 2 being tomorrow!
Wait, I mean aerodynamic. Hairless sounds odd, but aerodynamic... Yeah, I'm just evolved, that's it... *whistles innocently*
The neupogen bone pain has been manageable with Percocet, but I'm looking forward to getting off of it. I also picked up a stuffy nose over the weekend; Not unusual given I'm in a house full of sick people! Here's looking forward to treatment 2 being tomorrow!
Friday, November 9, 2007
OK, Now its Serious
I am in friggin agony over the neupogen. My entire spinal column radiates pain in waves, up to my neck and shoulder blades. My oncologist gave me percocet, which I'll be taking very soon.
The plan was to take the neupogen over the weekend, with the darling wife getting the honor of stabbing me. However, my insurance company initially declined the order (saying this drug requires mail order). Given the shots are $1,000 a pop, I understand somewhat, but:
a) We're talking a weekend here -- We CANT go to the office
b) We need it THIS weekend so I'm not neutropenic through the weekend and next week!
Suzanne popped on the phone with them and explained the situation. To my insurance company's credit (and my sincere gratitude), they were quick to provide us an override once they understood the situation. We have our shots, our percocet, and I'm ready for a weekend of being an invalid.
UPDATE: Thank God for percocet. Pain has pretty much subsided, so I'm not in agony.
The plan was to take the neupogen over the weekend, with the darling wife getting the honor of stabbing me. However, my insurance company initially declined the order (saying this drug requires mail order). Given the shots are $1,000 a pop, I understand somewhat, but:
a) We're talking a weekend here -- We CANT go to the office
b) We need it THIS weekend so I'm not neutropenic through the weekend and next week!
Suzanne popped on the phone with them and explained the situation. To my insurance company's credit (and my sincere gratitude), they were quick to provide us an override once they understood the situation. We have our shots, our percocet, and I'm ready for a weekend of being an invalid.
UPDATE: Thank God for percocet. Pain has pretty much subsided, so I'm not in agony.
Umm... Ow?
No joy on getting treatment today unfortunately. My neutrophils went from 0.1 to 0.3, a jump but not the 1.0 to 1.5 they want to continue. So, we got a new neupogen shot and will hope for Monday.
Speaking of neupogen, we are also waiting to see if my insurance company approves it. Not the shots in the office (which are fully approved), but the take home doses for the weekend. More doses = better odds we're getting tx 2 on Monday. At a grand a shot, I guess they need some time. On the bright side, once we get the next treatment we'll be on Neulasta, which is only a single shot.
In preparation, though, Suzanne got to give me the shot today. So my wife was legally permitted to stab me, how nice.
I want to get my next treatment as soon as possible, but a couple things are weighing on my mind. One, if I get treated next Monday, the work week will be in tatters. I need to work Tuesday for some fairly important meetings, and Wednesday will be... Well, it will be just ugly. Two, if I drop like this again, my oncologist will be forced to lower my chemo doses. Supposedly there's no risk (her point was she could treat me daily and practically guarantee killing the Hodge, but I might not care much as I'd be dead), and lots of people on the support forum have survived multi-week delays and crushed it, but I'm paranoid as usual.
Oh, and on neupogen -- It sucks. Every bone in my body aches, and I'm walking like I'm twice my age. My doc just gave me some Percocet for the weekend (wheeee!), but I'm dreading next week and the Neulasta now...
Speaking of neupogen, we are also waiting to see if my insurance company approves it. Not the shots in the office (which are fully approved), but the take home doses for the weekend. More doses = better odds we're getting tx 2 on Monday. At a grand a shot, I guess they need some time. On the bright side, once we get the next treatment we'll be on Neulasta, which is only a single shot.
In preparation, though, Suzanne got to give me the shot today. So my wife was legally permitted to stab me, how nice.
I want to get my next treatment as soon as possible, but a couple things are weighing on my mind. One, if I get treated next Monday, the work week will be in tatters. I need to work Tuesday for some fairly important meetings, and Wednesday will be... Well, it will be just ugly. Two, if I drop like this again, my oncologist will be forced to lower my chemo doses. Supposedly there's no risk (her point was she could treat me daily and practically guarantee killing the Hodge, but I might not care much as I'd be dead), and lots of people on the support forum have survived multi-week delays and crushed it, but I'm paranoid as usual.
Oh, and on neupogen -- It sucks. Every bone in my body aches, and I'm walking like I'm twice my age. My doc just gave me some Percocet for the weekend (wheeee!), but I'm dreading next week and the Neulasta now...
Thursday, November 8, 2007
The Boy In the Bubble
Today's episode is brought to you by the letters D, A, M, and N and the number 0.1.
So, we went in bright and cheerful for treatment 2. Cocky confidence was in full effect, and I wore a smile from ear to ear. Got plugged in (didn't even get upset when the nurse didn't use the numbing stuff), got my blood drawn, and saw my oncologist. She was amazed by the reduction in my neck area -- My left side has no feelable nodes left, and the right is smaller than when I saw her originally on October 2nd. Booya, baby!
Her next words were, "OK, now I'm going to have to make you a little sad." And sad she made me.
Apparently, while my white count was fine, my neutrophils were down to 0.1. This officially makes me NEUTROPENIC: Where I have no infection fighting ability. I'm in a lucky 1% of the ABVD taking population where I am EXTREMELY sensitive to the chemo. Good for killing Hodge, bad for making me wear what's on the left as a business suit if I want to go to the office. It also means I wouldn't get my treatment today.
Instead, I got a shot of neupogen, which makes your body's marrow go into overdrive and produce white blood cells. While we are going to try and have treatment tomorrow, the fact is its very unlikely they will come up in time. So, instead, I will get another shot of neupogen and get treatment Monday. No risk for delaying just a couple days, so c'est la vie.
In the meantime, public places crowds, public transportation, the office... All are out. So I'm working from home for a couple days.
The good news is that when I get treatment, they will start giving me Neulasta, which is like neupogen except you don't need to get it every day (just once per treatment). The bad news is its like a super neupogen, and your body's marrow lets you know how unhappy it is for working overtime by causing some lovely bone pain. Its just a few days and for a good cause, but still...
Other than that, everything is looking good. My kidneys took the barrage of dead cells they had to clear well, and are functioning great, as is the rest of my system. Now to just get an immune system back!
Anyway, I'll let you know how things make out tomorrow.
So, we went in bright and cheerful for treatment 2. Cocky confidence was in full effect, and I wore a smile from ear to ear. Got plugged in (didn't even get upset when the nurse didn't use the numbing stuff), got my blood drawn, and saw my oncologist. She was amazed by the reduction in my neck area -- My left side has no feelable nodes left, and the right is smaller than when I saw her originally on October 2nd. Booya, baby!
Her next words were, "OK, now I'm going to have to make you a little sad." And sad she made me.
Instead, I got a shot of neupogen, which makes your body's marrow go into overdrive and produce white blood cells. While we are going to try and have treatment tomorrow, the fact is its very unlikely they will come up in time. So, instead, I will get another shot of neupogen and get treatment Monday. No risk for delaying just a couple days, so c'est la vie.
In the meantime, public places crowds, public transportation, the office... All are out. So I'm working from home for a couple days.
The good news is that when I get treatment, they will start giving me Neulasta, which is like neupogen except you don't need to get it every day (just once per treatment). The bad news is its like a super neupogen, and your body's marrow lets you know how unhappy it is for working overtime by causing some lovely bone pain. Its just a few days and for a good cause, but still...
Other than that, everything is looking good. My kidneys took the barrage of dead cells they had to clear well, and are functioning great, as is the rest of my system. Now to just get an immune system back!
Anyway, I'll let you know how things make out tomorrow.
Wednesday, November 7, 2007
Twas the Night Before Chemo...
Well, another day down, and tomorrow is treatment 2 - My first cycle of ABVD will be complete! I'm looking forward to killing Hodge (as I always am), but I know I'm due for some craptastic feeling for a few days.
I'm also getting nervous about my blood counts. Once my white blood cells get low enough (they are killed along with cancer), my oncologist will start hitting me with Neulasta. Neulasta is a drug that puts your bone marrow into overdrive, creating more white blood cells so a cold won't land me a trip to the hospital. Sounds like a winner, right? Well, the downside is that bone marrow likes to remind you how pissed it is when put into overdrive. It does so by causing your bones to ache - badly. My oncologist said to me day 1 "There are drugs for pretty much everything we need to work with, and every drug has side effects."
Speaking of my oncologist, she's in for a surprise tomorrow. She gets to go through my list of questions tomorrow. Hope she's light on the appointment calendar Thursday morning. However, we're bringing coffee and donuts for them all, so hopefully she won't mind so much.
Steven has been sick for the last two weeks, and still sounds like ass. I've been playing with him (not going to lock myself up), but I've been washing my hands raw at the same time. Suzanne took him to the pediatrician a while ago, but they said it was viral and they really couldn't do anything, it would clear on its own. Friggin lovely.
On the bright side, I got to hit DiBruno's for some quality italian bread today for the nice spaghetti and meatballs dinner tonight. I also helped myself to a nice chicken, mozzarella, roasted pepper and pesto sandwich for lunch (while the stomach is in good-week mode). The downside of my enjoyment of food is that I've gone up to about 248 lbs. Not losing weight (good), but getting the "I told you so" comments from Suzanne (bad).
So, tomorrow is tx 2. The Emend is in the medicine cabinet, the Colace is ready for the constipation, the ginger ale is in the fridge, and my saltines are standing by in the closet. Bring it on.
I'm also getting nervous about my blood counts. Once my white blood cells get low enough (they are killed along with cancer), my oncologist will start hitting me with Neulasta. Neulasta is a drug that puts your bone marrow into overdrive, creating more white blood cells so a cold won't land me a trip to the hospital. Sounds like a winner, right? Well, the downside is that bone marrow likes to remind you how pissed it is when put into overdrive. It does so by causing your bones to ache - badly. My oncologist said to me day 1 "There are drugs for pretty much everything we need to work with, and every drug has side effects."
Speaking of my oncologist, she's in for a surprise tomorrow. She gets to go through my list of questions tomorrow. Hope she's light on the appointment calendar Thursday morning. However, we're bringing coffee and donuts for them all, so hopefully she won't mind so much.
Steven has been sick for the last two weeks, and still sounds like ass. I've been playing with him (not going to lock myself up), but I've been washing my hands raw at the same time. Suzanne took him to the pediatrician a while ago, but they said it was viral and they really couldn't do anything, it would clear on its own. Friggin lovely.
On the bright side, I got to hit DiBruno's for some quality italian bread today for the nice spaghetti and meatballs dinner tonight. I also helped myself to a nice chicken, mozzarella, roasted pepper and pesto sandwich for lunch (while the stomach is in good-week mode). The downside of my enjoyment of food is that I've gone up to about 248 lbs. Not losing weight (good), but getting the "I told you so" comments from Suzanne (bad).
So, tomorrow is tx 2. The Emend is in the medicine cabinet, the Colace is ready for the constipation, the ginger ale is in the fridge, and my saltines are standing by in the closet. Bring it on.
Tuesday, November 6, 2007
Is It Thursday Yet?
I'm soooo ready to start Treatment 2. My left side of the neck is completely normal (looking), the right side is down, and I want it gone. Bring on my cocktail!!!
Well, Thursday will be here soon enough. Otherwise, same ol same ol. Work is going great, I feel good...
On a side note, keeping stress down is supposed to be important; On a whim, I decided to pick up one of those foo-foo, new age albums from Wyndham Hill. They had a compilation called "Relaxation" that I thought might be worth a try on train rides and such.
The first song was Yanni. I want my $9.99 back.
Since Suzanne and I are going to have lots of time to watch movies every other Thursday for a while, we grabbed a membership with Blockbuster Online. They have a nice deal where you pay $16 bucks and get two movies out at a time (shipping them to your mailbox). What's nice about them is you can return them at a Blockbuster store (rather than sending back) and even exchange movies at the store. So, we're watching The Illusionist and Casino Royale this week, should be fun (if the drugs don't knock me out again).
Well, Thursday will be here soon enough. Otherwise, same ol same ol. Work is going great, I feel good...
On a side note, keeping stress down is supposed to be important; On a whim, I decided to pick up one of those foo-foo, new age albums from Wyndham Hill. They had a compilation called "Relaxation" that I thought might be worth a try on train rides and such.
The first song was Yanni. I want my $9.99 back.
Since Suzanne and I are going to have lots of time to watch movies every other Thursday for a while, we grabbed a membership with Blockbuster Online. They have a nice deal where you pay $16 bucks and get two movies out at a time (shipping them to your mailbox). What's nice about them is you can return them at a Blockbuster store (rather than sending back) and even exchange movies at the store. So, we're watching The Illusionist and Casino Royale this week, should be fun (if the drugs don't knock me out again).
Monday, November 5, 2007
Weird Set of Emotions Today
Been some ups and downs today.
On the plus side, I felt GOOD today. And for the first time since I found out about this, I had some serious confidence about beating it. Not just confidence - I know the statistics, comfortable with the treatments, etc. But I'm talking about COCKY confidence: The kind where I'm not even thinking about the Hodge, because its going to go away like a damn cold after I kick its ass. Got some great feedback with how I'm doing in my new role at work, and its just been a great day overall.
So why a downside? Someone from the support forum I frequent unfortunately lost her 6 year battle with Hodgkins today. She passed away peacefully at home with her family. Good cancer my ass, and just proof that while the vast majority do beat this thing, some good people are taken down as well. I'm still confident, but the news is keeping me sober.
Beyond the Hodge, my Eagles put up a rather pathetic display yesterday. Can anyone say LETS GO FLYERS?
On the plus side, I felt GOOD today. And for the first time since I found out about this, I had some serious confidence about beating it. Not just confidence - I know the statistics, comfortable with the treatments, etc. But I'm talking about COCKY confidence: The kind where I'm not even thinking about the Hodge, because its going to go away like a damn cold after I kick its ass. Got some great feedback with how I'm doing in my new role at work, and its just been a great day overall.
So why a downside? Someone from the support forum I frequent unfortunately lost her 6 year battle with Hodgkins today. She passed away peacefully at home with her family. Good cancer my ass, and just proof that while the vast majority do beat this thing, some good people are taken down as well. I'm still confident, but the news is keeping me sober.
Beyond the Hodge, my Eagles put up a rather pathetic display yesterday. Can anyone say LETS GO FLYERS?
Sunday, November 4, 2007
Hooray for the Purple Pill!
I caved yesterday and called my oncologist, letting her know about the stomach pain I was having. Based upon my symptoms and timing, she didn't think it was the chemo, but rather gastritis or a stomach ulcer (Why, how could that be? I haven't had any stress or anything lately...). I mentioned I was on Nexium back when I was heavy, and she suggested going right back on it and avoiding acidic foods. While it wouldn't fix me right away, she said, I should start to feel better by today.
Well today is here. And I'd say I'm back to 97%!!! I'm not having stomach pain anymore; Rather, I just FEEL that my stomach is there, do you know what I mean? In any event, between that and everything else, I feel great!!! I took Nexium for years, and it was never a problem for me (its actually a very safe drug).
On the bad side, the right side of my neck "felt" weird, like it was growing. The wife doesn't think it is, so I'm probably being crazy, but I am looking forward to my next treatment (did I actually say that???).
So, here we are T minus 4 days to treatment 2. I miss the burn, and want to make more Hodge cells writhe in pain.
Well, off to watch some serious football today. Pats - Colts should be awesome, and here's hoping the Iggles can pull off an upset of the hated Dallas Cowboys. This is another sign I'm sure the Hodge won't get me -- I refuse to go out in such a horrible Eagles season.
EDIT: While the purple pill fixed my stomach, my gut has still been out of whack (however, that is more in line with what the chemo does). Oh well.
Well today is here. And I'd say I'm back to 97%!!! I'm not having stomach pain anymore; Rather, I just FEEL that my stomach is there, do you know what I mean? In any event, between that and everything else, I feel great!!! I took Nexium for years, and it was never a problem for me (its actually a very safe drug).
On the bad side, the right side of my neck "felt" weird, like it was growing. The wife doesn't think it is, so I'm probably being crazy, but I am looking forward to my next treatment (did I actually say that???).
So, here we are T minus 4 days to treatment 2. I miss the burn, and want to make more Hodge cells writhe in pain.
Well, off to watch some serious football today. Pats - Colts should be awesome, and here's hoping the Iggles can pull off an upset of the hated Dallas Cowboys. This is another sign I'm sure the Hodge won't get me -- I refuse to go out in such a horrible Eagles season.
EDIT: While the purple pill fixed my stomach, my gut has still been out of whack (however, that is more in line with what the chemo does). Oh well.
Saturday, November 3, 2007
Some Halloween Pictures
The wife decided to finally copy a couple pictures off the camera from Halloween. Here's a few shots of the rugrats:
Here's me and Steven:
And here's a picture of Sara with some of her friends (she's the third from the left):
Here's me and Steven:
And here's a picture of Sara with some of her friends (she's the third from the left):
Bad Stomach, Bad
Well, maybe I spoke too soon about the good week. Yesterday, I felt great, and came home to an awesome dinner (some sort of ham cheesy macaroni bake thing), so good that I decided to have a second helping.
Bad idea.
I was doubling over with stomach pains, so it was back to the Kytril (which didn't help all that much). If it wasn't for the fact that I'm not having diarrhea, I'd have thought food poisoning (although the family didn't have any problems either). My guess is something started working or wore off from my lovely ABVD cocktail.
It continued (to a lesser extent) into Friday, and here I am Saturday morning with no real pain, just a residual ache. Maybe I ate so much I stretched my stomach (I hadn't eaten like that in a long time)? Dunno, but it sucked in any event, particularly since Friday I REALLY felt 100% with my energy levels and such -- Just the damn stomach ache to keep me down.
On a separate note, I figured I'd give some more information on my oncologist / hero at present: Christine Szarka is one of the oncology docs at the Paoli Cancer Center, which is affiliated with the Fox Chase Cancer Center (a NCI location). She was a researcher there as well, and is certified with hematology as well as oncology (so blood cancers are her thing). Besides her knowledge on the subject, the fact that whenever I've called the cancer center I've had HER call me back within an hour every time has been nothing short of amazing, particularly with what's going on. I'm being good now and bringing questions with me to our appointments, but early on she was there to help answer things as they came up. That was so critically important.
My goal now is to give her another big W to put in the win column!
Bad idea.
I was doubling over with stomach pains, so it was back to the Kytril (which didn't help all that much). If it wasn't for the fact that I'm not having diarrhea, I'd have thought food poisoning (although the family didn't have any problems either). My guess is something started working or wore off from my lovely ABVD cocktail.
It continued (to a lesser extent) into Friday, and here I am Saturday morning with no real pain, just a residual ache. Maybe I ate so much I stretched my stomach (I hadn't eaten like that in a long time)? Dunno, but it sucked in any event, particularly since Friday I REALLY felt 100% with my energy levels and such -- Just the damn stomach ache to keep me down.
On a separate note, I figured I'd give some more information on my oncologist / hero at present: Christine Szarka is one of the oncology docs at the Paoli Cancer Center, which is affiliated with the Fox Chase Cancer Center (a NCI location). She was a researcher there as well, and is certified with hematology as well as oncology (so blood cancers are her thing). Besides her knowledge on the subject, the fact that whenever I've called the cancer center I've had HER call me back within an hour every time has been nothing short of amazing, particularly with what's going on. I'm being good now and bringing questions with me to our appointments, but early on she was there to help answer things as they came up. That was so critically important.
My goal now is to give her another big W to put in the win column!
Thursday, November 1, 2007
So It Will be Good Week, Bad Week, Eh?
Well, today was a VERY good day. I feel practically normal, minus some aches and pains. I also continue to have a "burning" sensation in the areas where I have Hodge, and I will continue to think its the Hodge getting its butt kicked.
So, it looks like it will be a good week, followed by a bad week, for six months. I'll live with that (particularly if it kicks this thing so I can live!!)
So, it looks like it will be a good week, followed by a bad week, for six months. I'll live with that (particularly if it kicks this thing so I can live!!)
Wednesday, October 31, 2007
Happy Halloween!
Happy Halloween everyone!
Today's been pretty good. My mouth pain has subsided somewhat, and now I just feel achy like I have the flu. Minor stuff for now, and I'm in good spirits.
Even though I was tired, I managed to get up and go out trick-or-treating with my kids. That was fun, and glad I did.
Work is hellish for the next week, and I'm not pleased. I have three days scheduled with 4 hour meetings in the morning and afternoon - Meaning I'm working from 7AM until around 6PM this week. Not very good on the body. My work is pretty much office stuff, so it won't be too bad, but I wish it wasn't so concentrated.
How to describe chemotherapy so far? I'm tired. Not "I can't walk another step" tired (I do a 1/2 mile walk each way from my train station to the office in downtown Philly), but "Its 7PM but feels like midnight" tired. I'm ready to crash now (and with the early morning tomorrow, I just might).
Today's been pretty good. My mouth pain has subsided somewhat, and now I just feel achy like I have the flu. Minor stuff for now, and I'm in good spirits.
Even though I was tired, I managed to get up and go out trick-or-treating with my kids. That was fun, and glad I did.
Work is hellish for the next week, and I'm not pleased. I have three days scheduled with 4 hour meetings in the morning and afternoon - Meaning I'm working from 7AM until around 6PM this week. Not very good on the body. My work is pretty much office stuff, so it won't be too bad, but I wish it wasn't so concentrated.
How to describe chemotherapy so far? I'm tired. Not "I can't walk another step" tired (I do a 1/2 mile walk each way from my train station to the office in downtown Philly), but "Its 7PM but feels like midnight" tired. I'm ready to crash now (and with the early morning tomorrow, I just might).
Tuesday, October 30, 2007
The Beginning
"I am waiting for you Vizzini! You told me to go back to the beginning, so I have."
-Inigo, "The Princess Bride"
Where to start? Well, let's start with hello. My name is Steve, and I'm a 34 year old typical guy with an office job, married, and two kids (12 and 3). What's NOT so typical is that I found out out on October 1st that I have lymphoma. Since I have a month of catching up to do, this will be a LONG post :-)
I should start by saying that in the spring, I hit 300 pounds. Office work plus food didn't really help my body much. However, hitting 300 pounds scared the crap out of me - So I started watching calories very closely, and started exercising. In a matter of 4 months, I lost about 50-60 pounds (before you start thinking it, it was NOT related to the cancer -- I put on 10 when I found out, and my wife lost 40 in the same timeframe, ha!).
In August, I noticed a bit of puffiness over my right collarbone. I figured it was a muscle pull from my workouts, and didn't think anything of it. A few weeks later, and it didn't go away, I figured it time to see the doctor.
My family doctor is awesome; We moved, and still travel 30 minutes to get to his office since we like him so much. I felt kinda whimpy for seeing him about a muscle pull, but I figured what the hell. He took a look and immediately said it was a fatty cyst, and no big deal. Then, he paused for a second, and asked me "Hey, if I sent you for a test, would you go? I don't think its anything, but I'd rather be safe." His precaution may have saved my life (to be determined yet, ha ha). So, I went for a CT scan on Monday, October 1st.
CT scan technicians are not poker players. This was obvious as I went in joking and laughing with the two technicians, but when they came to take me out of the machine it was like a graveyard. I knew something was up, to the point that I called my doc about it and asked him to give me a call back.
7:30PM that night, I got a call. Its never a good thing to get a call from a doctor at night. I'll always remember the words "Steve, its bad news, it looks like you have lymphoma. Its in your neck as well as your chest." My wife started crying, and I don't remember much beyond that. Luckily, my doc was on top of it and gave me a name and number, telling me to see this oncologist the next day, and that if I couldn't get an appointment to call him back immediately.
So, I did get an appointment with my oncologist (who we LOVE) at the Paoli Cancer Center. I won't go into the boring details, but in the last three weeks I've had multiple CTs, a PET scan, a biopsy, and a port-a-cath inserted for treatment. My hospital system has been nothing if not fast and on the ball.
So what's the bottom line?
I have Stage II ax Hodgkin's Lymphoma. As far as lymphomas (and most cancers) go, this is a "good" one to get. "Good" is relative, as I will state firsthand that cancer sucks, and even with this "good" one, too many people die. However, Stage II ax means that I'm considered early disease, with nodes only in my neck and chest (good thing), I'm "a" as I have no symptoms (good thing), but I have bulky disease in the chest, with the mass there being 10cm x 9cm (not so good thing). I'm right on the borderline for being considered bulky, but it is what it is. I had a second opinion at Fox Chase Cancer Center, and they don't even consider that a negative prognosticator -- Only that it means I will have radiation when done.
Last Friday, I started the first of 6 cycles (12 treatments) of ABVD chemotherapy, which will be followed by a course of radiation. This should give me about a 85 - 90+% chance of CURE. I like the sound of that. I'd prefer 100%, but I'll take what I can get.
I'll keep everyone in the loop on how I feel, and how things progress.
Where to start? Well, let's start with hello. My name is Steve, and I'm a 34 year old typical guy with an office job, married, and two kids (12 and 3). What's NOT so typical is that I found out out on October 1st that I have lymphoma. Since I have a month of catching up to do, this will be a LONG post :-)
I should start by saying that in the spring, I hit 300 pounds. Office work plus food didn't really help my body much. However, hitting 300 pounds scared the crap out of me - So I started watching calories very closely, and started exercising. In a matter of 4 months, I lost about 50-60 pounds (before you start thinking it, it was NOT related to the cancer -- I put on 10 when I found out, and my wife lost 40 in the same timeframe, ha!).
In August, I noticed a bit of puffiness over my right collarbone. I figured it was a muscle pull from my workouts, and didn't think anything of it. A few weeks later, and it didn't go away, I figured it time to see the doctor.
My family doctor is awesome; We moved, and still travel 30 minutes to get to his office since we like him so much. I felt kinda whimpy for seeing him about a muscle pull, but I figured what the hell. He took a look and immediately said it was a fatty cyst, and no big deal. Then, he paused for a second, and asked me "Hey, if I sent you for a test, would you go? I don't think its anything, but I'd rather be safe." His precaution may have saved my life (to be determined yet, ha ha). So, I went for a CT scan on Monday, October 1st.
CT scan technicians are not poker players. This was obvious as I went in joking and laughing with the two technicians, but when they came to take me out of the machine it was like a graveyard. I knew something was up, to the point that I called my doc about it and asked him to give me a call back.
7:30PM that night, I got a call. Its never a good thing to get a call from a doctor at night. I'll always remember the words "Steve, its bad news, it looks like you have lymphoma. Its in your neck as well as your chest." My wife started crying, and I don't remember much beyond that. Luckily, my doc was on top of it and gave me a name and number, telling me to see this oncologist the next day, and that if I couldn't get an appointment to call him back immediately.
So, I did get an appointment with my oncologist (who we LOVE) at the Paoli Cancer Center. I won't go into the boring details, but in the last three weeks I've had multiple CTs, a PET scan, a biopsy, and a port-a-cath inserted for treatment. My hospital system has been nothing if not fast and on the ball.
So what's the bottom line?
I have Stage II ax Hodgkin's Lymphoma. As far as lymphomas (and most cancers) go, this is a "good" one to get. "Good" is relative, as I will state firsthand that cancer sucks, and even with this "good" one, too many people die. However, Stage II ax means that I'm considered early disease, with nodes only in my neck and chest (good thing), I'm "a" as I have no symptoms (good thing), but I have bulky disease in the chest, with the mass there being 10cm x 9cm (not so good thing). I'm right on the borderline for being considered bulky, but it is what it is. I had a second opinion at Fox Chase Cancer Center, and they don't even consider that a negative prognosticator -- Only that it means I will have radiation when done.
Last Friday, I started the first of 6 cycles (12 treatments) of ABVD chemotherapy, which will be followed by a course of radiation. This should give me about a 85 - 90+% chance of CURE. I like the sound of that. I'd prefer 100%, but I'll take what I can get.
I'll keep everyone in the loop on how I feel, and how things progress.
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