So Thursday the 19th I went through a battery of tests at the hospital so that they can properly determine what stage I'm in and therefore officially come up with a treatment plan. By battery of tests I mean 3, and 2 of those I got to lay down for, it's a rough life. It was a long day for sure, though, I was there from 9am to almost 6pm. I find it interesting that no matter what you're at the hospital for, patient or support, just being there makes you really tired. But as we say, "Whatever doesn't kill you....", just seeing if you've been paying attention.
The first test was a bone marrow biopsy. I now have the utmost respect for anyone who has ever donated bone marrow. The test consists of taking a bone chip and then some marrow to biopsy. They take the sample from the "back part" of the pelvic bone so I had to lay on my stomach, which was good because then I couldn't see what was happening. They use local anesthesia to numb the area and then take the sample. It was brief, less then 10 minutes, but pretty painful anyway. I kept getting this mental picture of my house growing up where we had a huge tool bench in the basement. We had this old manual drill that had a ball at the top that you held in the ball of one hand and then kind of bowed out like a saw as a handle that you turned with the other hand to make the drill bit rotate. This is what I kept envisioning was happening "behind" me. Towards the end I started to get those sweats you get when something bad digestively is about to happen, but I made it through. The kicker was the shooting pains down my left leg when he took the 2 marrow samples.
After that was an echocardiogram. All I had to do was lay on my side, my kind of test.
After that was a PET scan. With a PET scan they inject you with a radioactive sugar. Cancer cells are highly active so they use sugar faster than normal cells so cancer cells show up very bright on the scan. This is how they see if the cancer has spread to other places in the body. After they injected the sugar I had to sit in an isolation booth for about 45 minutes before the actual scan. During this time I had to sip a lovely Barium shake with a tasty berry flavor. It was like a Carnation Instant Breakfast gone horribly wrong. The actual scan consisted of, again, laying on a table for about 20 minutes and then I was done.
I won't have any results until December 2nd and I'm looking forward to having an actual plan of attack. Again I want to say I really value all of the encouraging comments I have received. I wish all of you a very happy and safe Thanksgiving if I don't talk to you before that.
Peace,
Ben
Saturday, November 21, 2009
Tuesday, November 17, 2009
The Club
While waiting for my appointment on Thursday I thought I might share a tiny nugget of a insight, for what that's worth, into our common human experience. I know, sounds deep, don't get your expectations up to high.
In our short time together my wife and I have joined a lot of clubs. These are special clubs. The kind of clubs that until you join, you have no idea the size of the membership. The kind of clubs that don't really send invitations but you're welcomed in with open arms. The kind of clubs that are formed not by religious affiliation, political party, social status, or any particular cause. The kind of clubs that bring complete strangers together in a bond that most times needs no words, clubs based on one of our basic human experiences - true empathy in the face of pain.
My wife and I joined the infertility club a few years into our marriage. Shortly after that we joined the miscarriage club. This was followed by the incredible privilege (and I truly mean privilege with 200% sincerity) of joining the adoption club. When we were given the gift of a biological child we joined the parents of a special needs child club.
By calling all of these experiences a club I certainly don't mean to minimize any of these things in any way. The common thread in all these things truly has been the chance to experience the sadness that life can bring but also the love and support of those closest to us, and those we hardly even know who somehow know exactly how we feel. Pain and sadness are a part of life, whether we like it or not it reshapes us. We have a saying in our household, "Whatever doesn't kill you makes you tired.." In the midst of our struggle we realize all the other people around us that have gone through the same situations. We are allowed the chance to reach out to other "new members" because we've been there before. The compassion and empathy that my wife and I have given and been given in all these trials has probably only just begun to be realized. Which brings us to our most recent enrollment.
I guess when it all comes down to it I see my membership into the cancer club the same way I see all our other memberships. It is part of who I am and who I will always be. Even after the cancer is gone, I will always have been a cancer patient. I will have another experience that I can point to and say, "See, we got through that, too". So, I don't know if any of you who read this are going through something, maybe you've got your own club you're in and you don't think you have any other members. Can I be so bold as to say, chances are there are more members than you think. While it may suck to be a member of some clubs, my hope for all of us is that we use our membership to be there for each other in whatever way we can.
Anywho, that's my random thoughts as I sit here. I'll post again after Thursday's appointments, even though I won't have any results until the 2nd.
Peace,
Ben
In our short time together my wife and I have joined a lot of clubs. These are special clubs. The kind of clubs that until you join, you have no idea the size of the membership. The kind of clubs that don't really send invitations but you're welcomed in with open arms. The kind of clubs that are formed not by religious affiliation, political party, social status, or any particular cause. The kind of clubs that bring complete strangers together in a bond that most times needs no words, clubs based on one of our basic human experiences - true empathy in the face of pain.
My wife and I joined the infertility club a few years into our marriage. Shortly after that we joined the miscarriage club. This was followed by the incredible privilege (and I truly mean privilege with 200% sincerity) of joining the adoption club. When we were given the gift of a biological child we joined the parents of a special needs child club.
By calling all of these experiences a club I certainly don't mean to minimize any of these things in any way. The common thread in all these things truly has been the chance to experience the sadness that life can bring but also the love and support of those closest to us, and those we hardly even know who somehow know exactly how we feel. Pain and sadness are a part of life, whether we like it or not it reshapes us. We have a saying in our household, "Whatever doesn't kill you makes you tired.." In the midst of our struggle we realize all the other people around us that have gone through the same situations. We are allowed the chance to reach out to other "new members" because we've been there before. The compassion and empathy that my wife and I have given and been given in all these trials has probably only just begun to be realized. Which brings us to our most recent enrollment.
I guess when it all comes down to it I see my membership into the cancer club the same way I see all our other memberships. It is part of who I am and who I will always be. Even after the cancer is gone, I will always have been a cancer patient. I will have another experience that I can point to and say, "See, we got through that, too". So, I don't know if any of you who read this are going through something, maybe you've got your own club you're in and you don't think you have any other members. Can I be so bold as to say, chances are there are more members than you think. While it may suck to be a member of some clubs, my hope for all of us is that we use our membership to be there for each other in whatever way we can.
Anywho, that's my random thoughts as I sit here. I'll post again after Thursday's appointments, even though I won't have any results until the 2nd.
Peace,
Ben
Friday, November 13, 2009
The Oncologist
Greetings All,
On Wednesday the 11th I had my first appointment with the Cancer Oncologist. I had written a list of all the questions I had, making my wife (aka Queen of Lists) very proud. I was feeling pretty prepared and somewhat looking forward to what he had to say because I know I'll be much better knowing "the plan".
The oncologist was very good at sitting down and explaining as much as we wanted to know. He answered most of my questions before I even had a chance to ask. I felt like he was taking his time and he had been doing this for a while so I'm comfortable with following through with my treatment plan with him and at this hospital, which was also important to me.
So, to the important part, "the plan". He went over my CT scan and explained the different stages of Hodgkins and how they would determine what stage I'm in. Stage 1 is if the tumor is the only cancer present. Stage 2 is if in addition to the tumor any cancer has spread to my lymph nodes or any other area in my chest. Stage 3 is if it has spread from my chest to any other area below the diaphragm. Stage 4 is if it has entered my bone marrow. To determine the staging I am going to have a bone marrow sample analyzed and a PET scan, both next Thursday the 19th. A PET scan is a lot like a CT scan only the stuff they make you drink highlights only cancer cells so when they scan the whole body they can spot any other places it might have spread. I also have an EKG scheduled for next Thursday because one of the side effects of the Chemo drugs the may use can be heart damage and the want to test ahead of time.
If my Hodgkins is either stage 1 or 2, which right now seems likely because there did not seem to be any swelling in any of my lymph nodes that they can check by feel, then I would go through a 4-6 month regimen of Chemo with Radiation at the end. They would use a 4 drug combination called ABVD, the initials stand for the first letter of each of the drugs involved, every 2 weeks by IV. So if 4 months kills it all I'll have 8 total Chemo treatments. 2 months in they would do another PET scan to see if the Chemo is doing its job. As the oncologist put it, the success rate with this treatment has been so high that the treatment plan really hasn't changed that much in years. It's the old if it ain't broke don't fix it deal. If it is stage 3 or 4 the treatment plan would change and he didn't really get into specifics of what that would look like, so we'll try to avoid 3 or 4.
I was told that 2-3 weeks after my first Chemo treatment that my hair would fall out. Oddly enough this seems to be the #1 question from people who know my situation right now. My boss seems to think that this is some traumatic event for me and that I'm extremely vain about my hair. Honestly, I could care less. I've been hoping to get rid of this hair on my back for years (OOO, that's too much information). I don't mind not having hair but what's a little weird to think about? No eyebrows, then I think I'll look a little like an alien. Anyway, 4-6 weeks after my last treatment he said my hair would start growing back so no big deal. Speaking of too much information, we were also given some information on options for our reproductive future. Chemo kills cells.....you figure it out this is a family post!
After my tests next Thursday I meet again with my oncologist December 2nd. At that point they will be able to stage me and really put together the official treatment plan and when I'll start. I still don't feel like a cancer patient. I don't think I will until I have my first Chemo session. I really appreciate the kind words and encouragement I've received in posts and other ways so far. It's meaningful to me. So here's to only Stage 1 or 2!!
Peace,
Ben
On Wednesday the 11th I had my first appointment with the Cancer Oncologist. I had written a list of all the questions I had, making my wife (aka Queen of Lists) very proud. I was feeling pretty prepared and somewhat looking forward to what he had to say because I know I'll be much better knowing "the plan".
The oncologist was very good at sitting down and explaining as much as we wanted to know. He answered most of my questions before I even had a chance to ask. I felt like he was taking his time and he had been doing this for a while so I'm comfortable with following through with my treatment plan with him and at this hospital, which was also important to me.
So, to the important part, "the plan". He went over my CT scan and explained the different stages of Hodgkins and how they would determine what stage I'm in. Stage 1 is if the tumor is the only cancer present. Stage 2 is if in addition to the tumor any cancer has spread to my lymph nodes or any other area in my chest. Stage 3 is if it has spread from my chest to any other area below the diaphragm. Stage 4 is if it has entered my bone marrow. To determine the staging I am going to have a bone marrow sample analyzed and a PET scan, both next Thursday the 19th. A PET scan is a lot like a CT scan only the stuff they make you drink highlights only cancer cells so when they scan the whole body they can spot any other places it might have spread. I also have an EKG scheduled for next Thursday because one of the side effects of the Chemo drugs the may use can be heart damage and the want to test ahead of time.
If my Hodgkins is either stage 1 or 2, which right now seems likely because there did not seem to be any swelling in any of my lymph nodes that they can check by feel, then I would go through a 4-6 month regimen of Chemo with Radiation at the end. They would use a 4 drug combination called ABVD, the initials stand for the first letter of each of the drugs involved, every 2 weeks by IV. So if 4 months kills it all I'll have 8 total Chemo treatments. 2 months in they would do another PET scan to see if the Chemo is doing its job. As the oncologist put it, the success rate with this treatment has been so high that the treatment plan really hasn't changed that much in years. It's the old if it ain't broke don't fix it deal. If it is stage 3 or 4 the treatment plan would change and he didn't really get into specifics of what that would look like, so we'll try to avoid 3 or 4.
I was told that 2-3 weeks after my first Chemo treatment that my hair would fall out. Oddly enough this seems to be the #1 question from people who know my situation right now. My boss seems to think that this is some traumatic event for me and that I'm extremely vain about my hair. Honestly, I could care less. I've been hoping to get rid of this hair on my back for years (OOO, that's too much information). I don't mind not having hair but what's a little weird to think about? No eyebrows, then I think I'll look a little like an alien. Anyway, 4-6 weeks after my last treatment he said my hair would start growing back so no big deal. Speaking of too much information, we were also given some information on options for our reproductive future. Chemo kills cells.....you figure it out this is a family post!
After my tests next Thursday I meet again with my oncologist December 2nd. At that point they will be able to stage me and really put together the official treatment plan and when I'll start. I still don't feel like a cancer patient. I don't think I will until I have my first Chemo session. I really appreciate the kind words and encouragement I've received in posts and other ways so far. It's meaningful to me. So here's to only Stage 1 or 2!!
Peace,
Ben
Monday, November 9, 2009
The Back Story
I am horrible with time. Pretty much everything to do with time. Being on time, telling time, any sort of time relationship. My wife can tell you to the day when something happened 4 years ago, I can't be sure if something happened yesterday or 3 weeks ago. All this to say I'm going to attempt to go back and explain how we got here.
I had a persistent cough for the better part of October. It just wasn't getting any better. It got to the point that my loving wife threatened that one of us was not going to make it unless one of us went to the doctor. So when the chills and sweats and body aches came I broke down and went to the doctor (a big step for us guys, I know). So Wednesday October 14th I went to my family doctor and he said I had the bug of the year and gave me antibiotics. By the following Tuesday the 20th I wasn't any better and so I called my doctor once again. He wrote me a prescription for a new and more powerful antibiotic. The next day I couldn't make it through work. I came home about noon and slept until 8:30......am......Thursday. About 10 or so Thursday my wife and I decided that maybe I should go to the ER to make sure I don't have regular flu, swine flu, pneumonia, etc. In the ER they tested for both strains of flu, pneumonia, and took some blood. I told the ER doctor that it felt a lot like Mono which I had before in high school. She said you can't get Mono twice (Liar) and they ordered a chest X-ray because of the cough. Then they ordered a CT scan of my chest, didn't really think much of it at the time, just standard procedure. After another half hour or so they came by and told me that on the X-ray and the CT scan they discovered a mass in my lung (Liar) and that I would need to follow up with my family doctor to schedule a biopsy. I'm sorry you found a what? And you need me to do what?
Honestly the first thing I thought of is how in the world am I going to tell my wife without her freaking out. Do what you want to me or with me but do not make my wife suffer. Allow me to let the ladies in on a little secret: Nothing is more devastating to a man than being helpless when their wife is in pain. I keep thinking in our storied journey together that I have learned to not accept this feeling but live with it, and I'm still wrong every time.
Anyhow, that Friday the 23rd of October I met with my family doctor and I asked him to draw some more blood to test my Iron levels and test for Mono because I was still exhausted. Turns out I tested positive for Mono and the mass was not in my lung at all but growing in my chest cavity. The official term is an anterior mediastinal mass. It's a pretty good size, too, about 3 inches around. It's bunched all in there next to my wind pipe, my pulmonary artery, and some other things I'm pretty sure are fairly important but it had never pushed on, impeded, or cut off any of those things so it was never detected. My doctor set me up with a Thoracic specialist on Monday the 26th. From there the Thoracic specialist set up my biopsy on the 2nd of November. And now we are here.
I have my first appointment with the Oncologist this Wednesday. This will be our first chance to ask all the specifics about what's going to happen and when. Through all of this it's easy to miss the fact that if I hadn't gone to the ER that day, if I hadn't had the crazy cough, if I hadn't gotten Mono twice, this thing would still be growing inside me and no one would be the wiser. Goes beyond coincidence, don't you think?
Peace,
Ben
I had a persistent cough for the better part of October. It just wasn't getting any better. It got to the point that my loving wife threatened that one of us was not going to make it unless one of us went to the doctor. So when the chills and sweats and body aches came I broke down and went to the doctor (a big step for us guys, I know). So Wednesday October 14th I went to my family doctor and he said I had the bug of the year and gave me antibiotics. By the following Tuesday the 20th I wasn't any better and so I called my doctor once again. He wrote me a prescription for a new and more powerful antibiotic. The next day I couldn't make it through work. I came home about noon and slept until 8:30......am......Thursday. About 10 or so Thursday my wife and I decided that maybe I should go to the ER to make sure I don't have regular flu, swine flu, pneumonia, etc. In the ER they tested for both strains of flu, pneumonia, and took some blood. I told the ER doctor that it felt a lot like Mono which I had before in high school. She said you can't get Mono twice (Liar) and they ordered a chest X-ray because of the cough. Then they ordered a CT scan of my chest, didn't really think much of it at the time, just standard procedure. After another half hour or so they came by and told me that on the X-ray and the CT scan they discovered a mass in my lung (Liar) and that I would need to follow up with my family doctor to schedule a biopsy. I'm sorry you found a what? And you need me to do what?
Honestly the first thing I thought of is how in the world am I going to tell my wife without her freaking out. Do what you want to me or with me but do not make my wife suffer. Allow me to let the ladies in on a little secret: Nothing is more devastating to a man than being helpless when their wife is in pain. I keep thinking in our storied journey together that I have learned to not accept this feeling but live with it, and I'm still wrong every time.
Anyhow, that Friday the 23rd of October I met with my family doctor and I asked him to draw some more blood to test my Iron levels and test for Mono because I was still exhausted. Turns out I tested positive for Mono and the mass was not in my lung at all but growing in my chest cavity. The official term is an anterior mediastinal mass. It's a pretty good size, too, about 3 inches around. It's bunched all in there next to my wind pipe, my pulmonary artery, and some other things I'm pretty sure are fairly important but it had never pushed on, impeded, or cut off any of those things so it was never detected. My doctor set me up with a Thoracic specialist on Monday the 26th. From there the Thoracic specialist set up my biopsy on the 2nd of November. And now we are here.
I have my first appointment with the Oncologist this Wednesday. This will be our first chance to ask all the specifics about what's going to happen and when. Through all of this it's easy to miss the fact that if I hadn't gone to the ER that day, if I hadn't had the crazy cough, if I hadn't gotten Mono twice, this thing would still be growing inside me and no one would be the wiser. Goes beyond coincidence, don't you think?
Peace,
Ben
Sunday, November 8, 2009
Welcome...
I've never much been the guy who would start a blog. However, I thought this might be the best way overall to share with loved ones all over the journey through what has happened, and is about to happen. I welcome any and all comments. I see this as not only a way to update everyone on what is physically happening but I'm sure I'll be sneaking in my thoughts and feelings on how things are going and how I'm doing on any particular day. For that reason I'm not always guaranteeing it's going to be PG13 around here!
The bottom line is this: on Wednesday, November 4th, 2009 I was informed that I have Nodular Sclerosing Hodgkins Lymphoma. At age 31 I was told I had cancer.
Peace,
Ben
The bottom line is this: on Wednesday, November 4th, 2009 I was informed that I have Nodular Sclerosing Hodgkins Lymphoma. At age 31 I was told I had cancer.
Peace,
Ben
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