Greetings All,
That's how I've kind of felt this week. Check Please! This week the frustration of it all set in for a few days. Another weekend of sleeping through most of it and my stomach upside down and I started to get a little discouraged. I know I'm now half-way through my treatments, and that the time has gone by fairly quickly. But for some reason 4 more treatments seems an awful lot to me right now. It's strange because soon I'll be done with another treatment and 3 doesn't seem like a lot, but 4 does. I've tried not to give it any thought that I could have to do more if the cancer is not responding, but we're not even going to go to that place.
I did meet with the Radiologist before my last treatment to discuss my options after Chemo. He was really good about setting out the short and long term affects of Radiation. One of my major concerns is that there are chances of secondary cancers later on from doing Radiation and I have read blogs of other people with Hodgkin's that have not done Radiation so I wanted the scoop.
The Radiologist pointed out that the percentages of secondary cancers are based on treatment methods from a few years ago when they treated the entire upper body. These days they are much more focused and with my cancer being confined to just the tumor site that the amount of other tissue being touched by Radiation would be minimal. Also, they use lower doses for Hodgkin's than for other cancers. That combined with the fact that if I don't Radiate I would be looking at a minimum of 4 additional treatments of Chemo and I think I'm going to choose Radiation.
So, after Chemo they would do another PET scan to make sure the cancer is dead and then I would go on to Radiation. The brutal thing about Radiation will be it's Monday-Friday for 4 weeks. But, Lord willing, that will be the end of things.
Finally, I have my chest scan set for this coming Monday so we'll get to see if the tumor has reduced in size and we're making progress. Treatment number 5 is on the horizon and then we'll be down to 3 (hopefully). Thanks again to everyone who comments or don't and are sending their good thoughts and prayers. I know that they have been helping, I wouldn't have gotten this far, this well, without the strength that you all have been praying over me and my family.
Peace,
Ben
Wednesday, January 27, 2010
Monday, January 18, 2010
The Halfway Point
Greetings All,
So Wednesday will be my fourth treatment and I have to say that in a way it seems to be going by rather quickly. After Wednesday my oncologist plans on scheduling a chest CT to see if we are making progress. I have to believe that the tumor is smaller simply for the fact that since my very first treatment I haven't coughed once. After almost 2 months of coughing before being diagnosed it just vanished as soon as I started Chemo.
Also Wednesday I meet with the Radiologist for the first time. It is just a meet and greet type deal. My wife has been reading a lot of other blogs from men who have gone through treatment for Hodgkin's and a lot of them never did Radiation. I know there can be some secondary complications from Radiation, including other cancers, but I hadn't really considered not Radiating. I guess it's something I need to do more homework on and be prepared to ask the medical team some questions. I know the tough part would be having to drive to the hospital every day because Radiation would be at least 5 times a week.
It's also been encouraging to read some other people's story because I don't know if my experience is typical or not. Here's some of the things I am beginning to realize about my experience with cancer:
1. I am most likely not going to lose my hair. The hair on my head has definitely thinned to the point that if you know me you can tell but I am by no means going bald.
2. I have actually gained a couple pounds so far through treatment. In reading some other blogs there's been some others that have had the same issue. I think part of it is the steroid I get with each treatment, but that's only an excuse for the first 48 hours. After that having something small and plain in my stomach constantly helps to manage the nausea better. So, I am really not thinking about food until after noon for about the first 5 days after treatment, but after that I eat small things almost every hour and a half for the rest of the day.
3. I have 3 different types of medication to deal with nausea and I have never thrown up (and I don't plan to). But for about 5 days after I have what I call "Airport Stomach". See whenever my wife and I use to go on vacation we would always get the cheap flights at like 6am so we had to be up some crazy hour. That early I could never eat but I felt hungry at the same time. Almost any food sounded terrible and my gag reflex sat at my Adam's Apple all the time. That's how I feel after treatment.
4. It is hard for us as human beings to maintain compassion for any length of time. Now, DO NOT get me wrong. I know I have a ton of people pulling for me, praying for me, and loving me and my family during this time. I so much appreciate every one of you who has posted comments it really means a lot. However, for a good number of people I am in contact with every day it has almost gotten to the point where, to them, I don't look sick and I don't look like I'm dying so there must not be anything wrong. I don't blame them, and I know I'm just as guilty as they are in doing this to other people. Just look at any major tragedy that happens to the world, the devastation in Haiti right now is a perfect example. For a few weeks, maybe a month, it will be the leading story every day and all sorts of charities will pop up everywhere. But after that we will start going about our everyday lives again. We will forget that there are still people hurting and dying. We will forget that there are hundreds of volunteers still there fighting every day to be the only hope the people of Haiti have. I'll be honest, I'll be one of those people, too. It is just hard for us, being human, to maintain that's all. Again, I know there are a lot of you out there that are not like that at all, thank God for all of you because you are the exception to the rule.
5. I start to dread treatment days starting earlier and earlier. When I started it was the day before, now it's 2 days before. It does get tough getting only a week of feeling somewhat normal before you go back again. It's hard knowing how I'm going to feel and, worse yet, knowing I'm not going to be there for my family for the next few days. I cannot say enough again how awesome my wife is. She is amazing. I know she needs her husband to be there and laugh and be silly. I know my son wants to have his daddy to wrestle on the floor with and run around and be crazy. I know I want to be able to feed and hold my daughter for an hour and have her laugh and smile at me. But mostly I just sleep.
So that's how treatment is going so far. I'm looking forward to positive news from my CT scan in a few weeks and heading down the homestretch of this challenge. Thank you again for all your thoughts and prayers, I know they are working.
Peace,
Ben
So Wednesday will be my fourth treatment and I have to say that in a way it seems to be going by rather quickly. After Wednesday my oncologist plans on scheduling a chest CT to see if we are making progress. I have to believe that the tumor is smaller simply for the fact that since my very first treatment I haven't coughed once. After almost 2 months of coughing before being diagnosed it just vanished as soon as I started Chemo.
Also Wednesday I meet with the Radiologist for the first time. It is just a meet and greet type deal. My wife has been reading a lot of other blogs from men who have gone through treatment for Hodgkin's and a lot of them never did Radiation. I know there can be some secondary complications from Radiation, including other cancers, but I hadn't really considered not Radiating. I guess it's something I need to do more homework on and be prepared to ask the medical team some questions. I know the tough part would be having to drive to the hospital every day because Radiation would be at least 5 times a week.
It's also been encouraging to read some other people's story because I don't know if my experience is typical or not. Here's some of the things I am beginning to realize about my experience with cancer:
1. I am most likely not going to lose my hair. The hair on my head has definitely thinned to the point that if you know me you can tell but I am by no means going bald.
2. I have actually gained a couple pounds so far through treatment. In reading some other blogs there's been some others that have had the same issue. I think part of it is the steroid I get with each treatment, but that's only an excuse for the first 48 hours. After that having something small and plain in my stomach constantly helps to manage the nausea better. So, I am really not thinking about food until after noon for about the first 5 days after treatment, but after that I eat small things almost every hour and a half for the rest of the day.
3. I have 3 different types of medication to deal with nausea and I have never thrown up (and I don't plan to). But for about 5 days after I have what I call "Airport Stomach". See whenever my wife and I use to go on vacation we would always get the cheap flights at like 6am so we had to be up some crazy hour. That early I could never eat but I felt hungry at the same time. Almost any food sounded terrible and my gag reflex sat at my Adam's Apple all the time. That's how I feel after treatment.
4. It is hard for us as human beings to maintain compassion for any length of time. Now, DO NOT get me wrong. I know I have a ton of people pulling for me, praying for me, and loving me and my family during this time. I so much appreciate every one of you who has posted comments it really means a lot. However, for a good number of people I am in contact with every day it has almost gotten to the point where, to them, I don't look sick and I don't look like I'm dying so there must not be anything wrong. I don't blame them, and I know I'm just as guilty as they are in doing this to other people. Just look at any major tragedy that happens to the world, the devastation in Haiti right now is a perfect example. For a few weeks, maybe a month, it will be the leading story every day and all sorts of charities will pop up everywhere. But after that we will start going about our everyday lives again. We will forget that there are still people hurting and dying. We will forget that there are hundreds of volunteers still there fighting every day to be the only hope the people of Haiti have. I'll be honest, I'll be one of those people, too. It is just hard for us, being human, to maintain that's all. Again, I know there are a lot of you out there that are not like that at all, thank God for all of you because you are the exception to the rule.
5. I start to dread treatment days starting earlier and earlier. When I started it was the day before, now it's 2 days before. It does get tough getting only a week of feeling somewhat normal before you go back again. It's hard knowing how I'm going to feel and, worse yet, knowing I'm not going to be there for my family for the next few days. I cannot say enough again how awesome my wife is. She is amazing. I know she needs her husband to be there and laugh and be silly. I know my son wants to have his daddy to wrestle on the floor with and run around and be crazy. I know I want to be able to feed and hold my daughter for an hour and have her laugh and smile at me. But mostly I just sleep.
So that's how treatment is going so far. I'm looking forward to positive news from my CT scan in a few weeks and heading down the homestretch of this challenge. Thank you again for all your thoughts and prayers, I know they are working.
Peace,
Ben
Sunday, January 10, 2010
Port Placements and Birthday Wishes
Greetings All,
I first want to say a very Happy Birthday to my lovely wife. Today she is ........ years old. With my treatments she deserves more than I am giving her today and that's not right, but a lot about treatment is not right.
On Wednesday I had treatment #3 and had a port put in before the treatment. The process was pretty simple, lay on a table and let them slide a cyborg-like device under my skin. Piece of cake. They make a very small incision at the base of my neck to slide a tube into one of my blood vessels. Then they make another cut above my right breast and put the port in and connect the two together. Now I have a shaved chest and two large bandaged areas that I have to keep dry for 2 weeks. It's a pain to tape plastic wrap over it to shower, but not showering is not really an option. So now they can just put the IV connection right into the port for the rest of my treatments.
I managed to go to work both Thursday and Friday. I am feeling some pressure to not miss a lot of days going forward, which makes me feel a little angry but when it comes down to it my employer has really been there and supported me more than most employers would. To be honest, I think it might help me to try and push myself a little. It keeps my mind off how I'm feeling and that's a good thing. Yesterday, however, I kind of crashed and spent most of the day napping. I am feeling a little better this morning, not as tired, but my stomach is still doing loops and probably will for most of today. But I am going to get up and shower and leave the house today in an effort to be more human.
Sorry for rambling on, I have no coherent thoughts today. I hope all of you are well and it is at least warmer than 3 degrees where some of you are (that was the actual temp when I woke up this morning).
Happy Birthday my love,
Ben
I first want to say a very Happy Birthday to my lovely wife. Today she is ........ years old. With my treatments she deserves more than I am giving her today and that's not right, but a lot about treatment is not right.
On Wednesday I had treatment #3 and had a port put in before the treatment. The process was pretty simple, lay on a table and let them slide a cyborg-like device under my skin. Piece of cake. They make a very small incision at the base of my neck to slide a tube into one of my blood vessels. Then they make another cut above my right breast and put the port in and connect the two together. Now I have a shaved chest and two large bandaged areas that I have to keep dry for 2 weeks. It's a pain to tape plastic wrap over it to shower, but not showering is not really an option. So now they can just put the IV connection right into the port for the rest of my treatments.
I managed to go to work both Thursday and Friday. I am feeling some pressure to not miss a lot of days going forward, which makes me feel a little angry but when it comes down to it my employer has really been there and supported me more than most employers would. To be honest, I think it might help me to try and push myself a little. It keeps my mind off how I'm feeling and that's a good thing. Yesterday, however, I kind of crashed and spent most of the day napping. I am feeling a little better this morning, not as tired, but my stomach is still doing loops and probably will for most of today. But I am going to get up and shower and leave the house today in an effort to be more human.
Sorry for rambling on, I have no coherent thoughts today. I hope all of you are well and it is at least warmer than 3 degrees where some of you are (that was the actual temp when I woke up this morning).
Happy Birthday my love,
Ben
Saturday, January 2, 2010
The Best Holidays in Years
Greetings,
I hope that everyone reading had a great and safe Christmas and New Year. It's been several days since my last post and we have a lot of ground to cover but I have to say that the past week and a bit has been a wonderful time spent with friends and family.
As I mentioned in my last post I had treatment the 23rd. For the most part I felt great through Christmas Eve and Christmas Day which allowed me to fully enjoy the excitement and joy of having kids at Christmas and having so much family around. We celebrate Christmas Eve with my wife's family, and this year we had my brother-in-law with us from Arizona which was awesome. This began the present gauntlet for our son Gabe. I swear each year we don't spend that much and are overwhelmed by the shear volume of "stuff" he gets each year. Christmas Day was spent with my family and again it was just an amazing time and I felt good.
The next 2 days were about like last time. I was extremely tired, my mouth was sore but not like last time. I felt more nauseous than last time but I was never sick. I took a lot more of my medicine than round 1. After Christmas Day food really did not sound good until later in the day. Around noon or 1pm I would feel like I wanted to eat something. Plain baked potatoes and a Frosty to make my mouth feel better have become a staple in the bad days.
About Sunday the 27th I started to shed. My hair is slowly starting to fall out. It's not like I had a lot of bald patches starting, or if I shook my head hair would just start falling out. It was more like if I ran my hand through my hair I would get a fistful. Since it was starting to get all over the house I had my head "buzzed" on Tuesday the 29th (thanks Liz your the best). I think when the motivation strikes me I'll post some before and after pics. With it short you can tell it's thinning, and I leave a total mess in the shower, but still no bald spots.
On Monday I started to experience some pretty bad side effects from the shot they gave me the day after treatment. Because of my low WBC counts I received a shot of Neulasta, which stimulates the body to produce more White Blood Cells. The side effects are usually joint and muscle aches similar to flu-like symptoms. Starting Monday I was in A LOT of pain. Every joint hurt from my hips down, to the point where it was difficult to walk. To make matters worse the pain spread to my lower back and by that evening I was not able to sleep. Finally about 1am I came downstairs, took some Tylenol, and tried to go find a comfortable position to close my eyes for awhile. I must have fallen asleep at some point because about 4am I woke up with a crazy case of night sweats and the pain was gone. Weird, huh? Fortunately I managed the pain pretty well the next day with Tylenol every 4 hours, and by Wednesday it was mostly gone. Since then I've been back to normal.
We had our best friends visit from Texas before New Years and that was another amazing couple of days. The moved out of state a few months ago and it was so good to see them. Then my older brother and his family came into town for New Years. We spent New Years with my parents, my older brother's family (he and his wife have 3 kids), and my younger brother and his fiancee. Surprisingly we all made it to midnight (except Gabe and Ellie), even me!
So, Christmas and New Years were probably the best I've had in years. Being able to see everyone and be surrounded by their love and support. To be able to laugh a ton and watch the joy on our kids' faces for Christmas has been incredible. If there has been a downside at all is that it did make the time fly and I can't believe that treatment #3 is Wednesday already. I feel like I was just there! I am also visiting the urologist on Monday just to make sure there are no other complications, though it seems like the bathroom issues have finally gone away. I hope everyone had a chance to truly enjoy something about the holidays this year. Who knows what 2010 has in store for us all.
Peace,
Ben
I hope that everyone reading had a great and safe Christmas and New Year. It's been several days since my last post and we have a lot of ground to cover but I have to say that the past week and a bit has been a wonderful time spent with friends and family.
As I mentioned in my last post I had treatment the 23rd. For the most part I felt great through Christmas Eve and Christmas Day which allowed me to fully enjoy the excitement and joy of having kids at Christmas and having so much family around. We celebrate Christmas Eve with my wife's family, and this year we had my brother-in-law with us from Arizona which was awesome. This began the present gauntlet for our son Gabe. I swear each year we don't spend that much and are overwhelmed by the shear volume of "stuff" he gets each year. Christmas Day was spent with my family and again it was just an amazing time and I felt good.
The next 2 days were about like last time. I was extremely tired, my mouth was sore but not like last time. I felt more nauseous than last time but I was never sick. I took a lot more of my medicine than round 1. After Christmas Day food really did not sound good until later in the day. Around noon or 1pm I would feel like I wanted to eat something. Plain baked potatoes and a Frosty to make my mouth feel better have become a staple in the bad days.
About Sunday the 27th I started to shed. My hair is slowly starting to fall out. It's not like I had a lot of bald patches starting, or if I shook my head hair would just start falling out. It was more like if I ran my hand through my hair I would get a fistful. Since it was starting to get all over the house I had my head "buzzed" on Tuesday the 29th (thanks Liz your the best). I think when the motivation strikes me I'll post some before and after pics. With it short you can tell it's thinning, and I leave a total mess in the shower, but still no bald spots.
On Monday I started to experience some pretty bad side effects from the shot they gave me the day after treatment. Because of my low WBC counts I received a shot of Neulasta, which stimulates the body to produce more White Blood Cells. The side effects are usually joint and muscle aches similar to flu-like symptoms. Starting Monday I was in A LOT of pain. Every joint hurt from my hips down, to the point where it was difficult to walk. To make matters worse the pain spread to my lower back and by that evening I was not able to sleep. Finally about 1am I came downstairs, took some Tylenol, and tried to go find a comfortable position to close my eyes for awhile. I must have fallen asleep at some point because about 4am I woke up with a crazy case of night sweats and the pain was gone. Weird, huh? Fortunately I managed the pain pretty well the next day with Tylenol every 4 hours, and by Wednesday it was mostly gone. Since then I've been back to normal.
We had our best friends visit from Texas before New Years and that was another amazing couple of days. The moved out of state a few months ago and it was so good to see them. Then my older brother and his family came into town for New Years. We spent New Years with my parents, my older brother's family (he and his wife have 3 kids), and my younger brother and his fiancee. Surprisingly we all made it to midnight (except Gabe and Ellie), even me!
So, Christmas and New Years were probably the best I've had in years. Being able to see everyone and be surrounded by their love and support. To be able to laugh a ton and watch the joy on our kids' faces for Christmas has been incredible. If there has been a downside at all is that it did make the time fly and I can't believe that treatment #3 is Wednesday already. I feel like I was just there! I am also visiting the urologist on Monday just to make sure there are no other complications, though it seems like the bathroom issues have finally gone away. I hope everyone had a chance to truly enjoy something about the holidays this year. Who knows what 2010 has in store for us all.
Peace,
Ben
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