Greetings All,
So yesterday I had my second round of Chemo. It almost didn't happen and the results are leaving me wondering if I'm going to have some problems staying on my 2 week schedule in the future. Before each round of Chemo they take a blood sample to check my blood counts. All my counts came back to normal ranges except for my White Blood Cell count. The normal range for WBCs is 4.0 - 10.0 thousands per mcL. My WBCs were 1.5. That's low but they said they can still do treatment at that level. The problem came in a subclass of the WBCs called nuetrophils, I guess those are the guys that help to fight off infection. Normal nuetrophil levels are 1.7-7.6 (thousands). My nuetrophil level was 300. Yeah, 300.
When the nurse came in she said with those kind of levels they would probably postpone treatment. At these levels I am extremely susceptible to infection, and may possibly explain why things with going to the bathroom have not cleared up like they should. I am still having some pain and a few drops of blood reappeared yesterday. I am also having some discomfort in the area of my left kidney. I have no idea whether these symptoms are related to treatment or if I am just displaying another talent of my of compounding existing problems and working on a kidney stone. I guess given the choice between kidney stone and kidney damage from the Chemo I choose stone but I'm hoping it's neither.
Anyway, back to the dangerously low WBC. Kim and I had started to think this wasn't going to happen and I might catch a break and feel good for Christmas after all. I was a little disappointed because you prepare yourself for these things and I don't want to keep dragging things out but I wouldn't have minded being 100% for Christmas. However, after talking to 2 doctors they determined that I wasn't showing any signs of fever, I was young, and feeling relatively good so they decided to go on with the treatment. Because of the low WBC levels I have to go back today and get a shot to boost my bone marrow to produce more white blood cells. Of course with everything there's some study that shows that it reacts with one of the drugs in my Chemo cocktail and that it can cause damage to the lungs, which is not cool I'm still kind of using those. But from what I've read online lots of people get this shot so it's just one more trip to the hospital.
I'm definitely more tired than last time already. I was looking pretty pale with dark circles under my eyes yesterday but after a long nights sleep I'm looking better (for me anyway). Still no sign of any hair starting to fall out which is a problem in a way because I haven't had a hair cut in weeks and I was hoping to save on a trip to the barber shop. My scalp is sensitive and we just took poisoning number two so it shouldn't take long.
On this Christmas Eve I again want to thank you for all your support, love, and prayers you've sent our way. I want to wish all of you a very Merry Christmas. It's times like this that make me cherish the excitement on my son's face, the inexplicable joy of my daughter's smile, the warmth of people's concern for me, the unending support of my parents and family, the undying devotion of my wife, and the gift of a small child born in a manger that can save us all.
Merry Christmas Everyone,
Ben
"Earth has no sorrow heaven can't heal"
-Vigilantes of Love
Thursday, December 24, 2009
Wednesday, December 16, 2009
The Shine is Off
Greetings All,
I apologize for not being in contact the last couple days. I have been remiss in documenting parts of the journey. Unfortunately it is not because I've been lazy, which is usually the case. Lately I have had an acute case of the "I can't keep my eyes open".
As I mentioned in my last post, the actual treatment went very well and I felt good the rest of that day and mostly into the next. Friday I was tired but for the most part felt OK. Saturday through today proved to be a struggle. They were right about the fatigue, it is omnipresent. It' kind of like having Mono only you sometimes have the aches more associated with the flu. That is slowly getting better, I feel a little more energetic each day now. According to the treatments my blood platelets, white cell, and red cell counts should all be the lowest tomorrow so to have a little more energy now is a good sign.
So three things started to happen on Saturday, and I apologize if I make anyone uncomfortable here. The first thing is I started to exhibit signs of a urinary tract infection, that's as much detail as I'll offer on that. So it's been rather uncomfortable but the antibiotics are finally doing their job. The second is my arm where they put the IV in started to get very sore and swollen around the wrist. This led me to the decision to get a port put in before the next treatment. A port is a device that is installed either in your arm or chest and it stays just under the skin for the duration of treatment. It has a tube that stays in your vein and they can hook up the IV to the access part near the skin. It is much easier on the veins, and I'd kind of like to keep mine healthy for the rest of my life. The last thing that developed was my mouth and tongue became extremely raw and sensitive. It was almost like I was going to develop sores but they never came. This made it very difficult to chew and made eating, well, not very appetizing. I was told to swish with warm water with a 1/2 teaspoon of salt and baking soda to get rid of the food particles that were agitating my mouth after every time I ate. It actually wasn't as bad as it sounds and it did make my mouth feel better. All of these, except for the infection, are common side effects and I'm happy to report that they all are getting better.
I've been able to go to work every day this week, which is good. I had let people at work know of my condition at one of our sales meetings last week and asked that, while I appreciate their concern, it would really help me if they didn't ask how I was doing all the time. For the most part it helps to do work while I'm at work, it keeps my mind off things and makes the day go by faster. With the fatigue it makes me pretty worthless by the time I get home. My wife has been amazing and we have good help from family near us.
One thing the nurse told me definitely is becoming more clear. She told us at our first session that I'll come to dread my next appointment. It's true. It's right about the time that I will probably feel normal again that I'll have to go back. That makes the next 4 months seem like a long time. On the other hand, I'm already a week away from my next treatment and the holidays will fly by. Now that I've gotten a taste of what we are in for I ask that you continue to pray not just for me but for my wife and kids. I need to have the strength to be there for them as much as I can and my wife is so amazing taking care of everything right now.
Peace to all of you,
Ben
I apologize for not being in contact the last couple days. I have been remiss in documenting parts of the journey. Unfortunately it is not because I've been lazy, which is usually the case. Lately I have had an acute case of the "I can't keep my eyes open".
As I mentioned in my last post, the actual treatment went very well and I felt good the rest of that day and mostly into the next. Friday I was tired but for the most part felt OK. Saturday through today proved to be a struggle. They were right about the fatigue, it is omnipresent. It' kind of like having Mono only you sometimes have the aches more associated with the flu. That is slowly getting better, I feel a little more energetic each day now. According to the treatments my blood platelets, white cell, and red cell counts should all be the lowest tomorrow so to have a little more energy now is a good sign.
So three things started to happen on Saturday, and I apologize if I make anyone uncomfortable here. The first thing is I started to exhibit signs of a urinary tract infection, that's as much detail as I'll offer on that. So it's been rather uncomfortable but the antibiotics are finally doing their job. The second is my arm where they put the IV in started to get very sore and swollen around the wrist. This led me to the decision to get a port put in before the next treatment. A port is a device that is installed either in your arm or chest and it stays just under the skin for the duration of treatment. It has a tube that stays in your vein and they can hook up the IV to the access part near the skin. It is much easier on the veins, and I'd kind of like to keep mine healthy for the rest of my life. The last thing that developed was my mouth and tongue became extremely raw and sensitive. It was almost like I was going to develop sores but they never came. This made it very difficult to chew and made eating, well, not very appetizing. I was told to swish with warm water with a 1/2 teaspoon of salt and baking soda to get rid of the food particles that were agitating my mouth after every time I ate. It actually wasn't as bad as it sounds and it did make my mouth feel better. All of these, except for the infection, are common side effects and I'm happy to report that they all are getting better.
I've been able to go to work every day this week, which is good. I had let people at work know of my condition at one of our sales meetings last week and asked that, while I appreciate their concern, it would really help me if they didn't ask how I was doing all the time. For the most part it helps to do work while I'm at work, it keeps my mind off things and makes the day go by faster. With the fatigue it makes me pretty worthless by the time I get home. My wife has been amazing and we have good help from family near us.
One thing the nurse told me definitely is becoming more clear. She told us at our first session that I'll come to dread my next appointment. It's true. It's right about the time that I will probably feel normal again that I'll have to go back. That makes the next 4 months seem like a long time. On the other hand, I'm already a week away from my next treatment and the holidays will fly by. Now that I've gotten a taste of what we are in for I ask that you continue to pray not just for me but for my wife and kids. I need to have the strength to be there for them as much as I can and my wife is so amazing taking care of everything right now.
Peace to all of you,
Ben
Thursday, December 10, 2009
The Chemo Virgin
Greetings All,
First of all, let me say right of the bat that I am feeling good after my first treatment. As of now, no nausea or any other bad side effect.
With that said, today I had my first Chemotherapy treatment. We arrived about 10 minutes early for my 1:30 appointment but didn't get called back to the treatment area unit about 2pm. The weather here the last 2 days has been challenging with crazy high winds and snow so apparently a lot of the early appointments showed up late. So that gave me more time to be nervous!! Once I was called back, though, I really wasn't nervous at all. The treatment clinic is just down the hall from my Oncologist in the hospital. They have a huge area with some private rooms, some curtained off rooms, and then a large common area with recliners that probably seats about 20 (so hurry up, and bring your juke box money). Sorry, it just popped into my head when I wrote that and thought I'd get it stuck in yours. There's also a few restrooms and a small kitchen in which they have coffee, soda, water, and some snacks and treats other patients bring in. It's actually a very cool, pretty calm, and upbeat atmosphere.
The first half hour they put my IV in, and then gave me an anti-nausea drug and a steroid through the IV. Then they started on the actual Chemo drugs. I have a 4 drug cocktail and they are given 1 at a time. 2 of the drugs take about 15 minutes each, 1 drug takes about a half hour, and the last takes about an hour. So all in all treatments can take about 2-3 hours for me. This one was a little bit longer than 3 hours because of it being my first time there was more prep and what not. All the nurses I met, and especially the one that attended to me today, are fantastic. She gave me just a ton of information about everything she was doing, the drugs, some hints and tips, and besides all that she just was very warm, friendly, and caring. I would think you have to have a certain disposition anyway to work in Oncology and treat cancer patients all day. I know there are a lot of jobs like that and they deserve a lot more recognition than they get.
3 of the drugs are just like having an IV drip. You don't feel anything different at all. One of the things the nurses keep checking is that the IV stays firmly in the vein and that the vein stays open because almost all these Chemo drugs could cause serious permanent tissue damage if they get outside the vein into the surrounding tissue. Unfortunately, the drug that takes an hour does not feel like a normal IV. It causes vein irritation and soreness. When it goes in it burns a little but it also makes my whole forearm feel like the muscles are about to cramp up, but they never do. It's dull and constant pain until it's done. It's not overwhelming and definitely bearable but uncomfortable.
The only real side effects I'm having at the moment are a little bit of tiredness and I feel just a little shaky all over. The shakiness is most likely from the steroid, I can still feel that my heart rate is up a little. The steroid should keep me feeling pretty normal for the first 48 hours then I just have to watch for fatigue and if I start to feel nauseous. If I don't have any sort of set backs, I'd say today was a very positive day. I'm sure I'll have my rough times but everyone at the clinic strives to make sure the nausea stays away, and that was my biggest concern.
So, one down, seven more to go. Thanks everyone for the prayers and positive thoughts, I really appreciate all of you. I will of course continue to post how I'm feeling until my next treatment in 2 weeks.
Peace,
Ben
First of all, let me say right of the bat that I am feeling good after my first treatment. As of now, no nausea or any other bad side effect.
With that said, today I had my first Chemotherapy treatment. We arrived about 10 minutes early for my 1:30 appointment but didn't get called back to the treatment area unit about 2pm. The weather here the last 2 days has been challenging with crazy high winds and snow so apparently a lot of the early appointments showed up late. So that gave me more time to be nervous!! Once I was called back, though, I really wasn't nervous at all. The treatment clinic is just down the hall from my Oncologist in the hospital. They have a huge area with some private rooms, some curtained off rooms, and then a large common area with recliners that probably seats about 20 (so hurry up, and bring your juke box money). Sorry, it just popped into my head when I wrote that and thought I'd get it stuck in yours. There's also a few restrooms and a small kitchen in which they have coffee, soda, water, and some snacks and treats other patients bring in. It's actually a very cool, pretty calm, and upbeat atmosphere.
The first half hour they put my IV in, and then gave me an anti-nausea drug and a steroid through the IV. Then they started on the actual Chemo drugs. I have a 4 drug cocktail and they are given 1 at a time. 2 of the drugs take about 15 minutes each, 1 drug takes about a half hour, and the last takes about an hour. So all in all treatments can take about 2-3 hours for me. This one was a little bit longer than 3 hours because of it being my first time there was more prep and what not. All the nurses I met, and especially the one that attended to me today, are fantastic. She gave me just a ton of information about everything she was doing, the drugs, some hints and tips, and besides all that she just was very warm, friendly, and caring. I would think you have to have a certain disposition anyway to work in Oncology and treat cancer patients all day. I know there are a lot of jobs like that and they deserve a lot more recognition than they get.
3 of the drugs are just like having an IV drip. You don't feel anything different at all. One of the things the nurses keep checking is that the IV stays firmly in the vein and that the vein stays open because almost all these Chemo drugs could cause serious permanent tissue damage if they get outside the vein into the surrounding tissue. Unfortunately, the drug that takes an hour does not feel like a normal IV. It causes vein irritation and soreness. When it goes in it burns a little but it also makes my whole forearm feel like the muscles are about to cramp up, but they never do. It's dull and constant pain until it's done. It's not overwhelming and definitely bearable but uncomfortable.
The only real side effects I'm having at the moment are a little bit of tiredness and I feel just a little shaky all over. The shakiness is most likely from the steroid, I can still feel that my heart rate is up a little. The steroid should keep me feeling pretty normal for the first 48 hours then I just have to watch for fatigue and if I start to feel nauseous. If I don't have any sort of set backs, I'd say today was a very positive day. I'm sure I'll have my rough times but everyone at the clinic strives to make sure the nausea stays away, and that was my biggest concern.
So, one down, seven more to go. Thanks everyone for the prayers and positive thoughts, I really appreciate all of you. I will of course continue to post how I'm feeling until my next treatment in 2 weeks.
Peace,
Ben
Wednesday, December 2, 2009
The Way Forward
(Please Ford don't sue me I stole your slogan)
Greetings All,
Today I had my follow up visit with the Oncologist to get the results of my bone marrow biopsy and my PET scan. I am happy to report that the biopsy came back normal and the PET scan showed no further cancerous areas. This means that I am officially in Stage 1A. Stage 1A is basically that I have a cancerous tumor and nothing else and that I exhibit no other symptoms like night sweats, rapid weight loss, etc. The bottom line is that we caught it early. Thank God for Mono, and I mean that literally. With all the tests behind me I can finally start treatment.
I had a chance to go to a Chemo informational class at the hospital but it only meets on Thursday and they couldn't fit me in to tomorrow's class. If I waited until next Thursday then I'm losing another week before I start. I decided to forego the class, at this point I just want to get started.
My first Chemo treatment will start next Thursday the 10th. It was originally scheduled for the 9th but the office called and said they were booked. After that I will go every other Wednesday for Chemo for 4 months, 8 treatments in all. After that I'll go through another PET scan, if that is clean then I'll do a round of radiation to make sure the tumor is completely eliminated. If the PET scan is not clean I'll do another 2 months of Chemo and then radiation. The Oncologist says that with this course of treatment there's about a 90% cure rate. It's amazing to me that I have a 90% chance of getting rid of this and it never coming back again. That's the kind of stuff that makes you want so badly to find the trick for all these other types of cancer.
I was also given 3 prescriptions, 2 for nausea I can take at home once treatment starts and 1 that apparently helps to prevent Gout. I was told that once Chemo starts cancer cells can die rapidly and when they do they release acid into the body that can cause Gout. So I take this drug for the first 2 weeks of treatment to prevent it, which sounds like an entirely good idea to me. The doc says that side effects for the most part will be nausea and fatigue. The fatigue thing I'm not worried about, we have 2 kids, I have chronic fatigue. It's a way of life. The nausea he says is pretty manageable for the most part and I plan right now on only missing work for the day of Chemo. I'm feeling a little nervous about actually starting treatment but I'm very relieved that we can start moving forward.
Thanks again all of you who read and have been encouraging me with comments, emails, prayers, positive thoughts, and all the above. Now the real fun can finally begin.
Peace,
Ben
Greetings All,
Today I had my follow up visit with the Oncologist to get the results of my bone marrow biopsy and my PET scan. I am happy to report that the biopsy came back normal and the PET scan showed no further cancerous areas. This means that I am officially in Stage 1A. Stage 1A is basically that I have a cancerous tumor and nothing else and that I exhibit no other symptoms like night sweats, rapid weight loss, etc. The bottom line is that we caught it early. Thank God for Mono, and I mean that literally. With all the tests behind me I can finally start treatment.
I had a chance to go to a Chemo informational class at the hospital but it only meets on Thursday and they couldn't fit me in to tomorrow's class. If I waited until next Thursday then I'm losing another week before I start. I decided to forego the class, at this point I just want to get started.
My first Chemo treatment will start next Thursday the 10th. It was originally scheduled for the 9th but the office called and said they were booked. After that I will go every other Wednesday for Chemo for 4 months, 8 treatments in all. After that I'll go through another PET scan, if that is clean then I'll do a round of radiation to make sure the tumor is completely eliminated. If the PET scan is not clean I'll do another 2 months of Chemo and then radiation. The Oncologist says that with this course of treatment there's about a 90% cure rate. It's amazing to me that I have a 90% chance of getting rid of this and it never coming back again. That's the kind of stuff that makes you want so badly to find the trick for all these other types of cancer.
I was also given 3 prescriptions, 2 for nausea I can take at home once treatment starts and 1 that apparently helps to prevent Gout. I was told that once Chemo starts cancer cells can die rapidly and when they do they release acid into the body that can cause Gout. So I take this drug for the first 2 weeks of treatment to prevent it, which sounds like an entirely good idea to me. The doc says that side effects for the most part will be nausea and fatigue. The fatigue thing I'm not worried about, we have 2 kids, I have chronic fatigue. It's a way of life. The nausea he says is pretty manageable for the most part and I plan right now on only missing work for the day of Chemo. I'm feeling a little nervous about actually starting treatment but I'm very relieved that we can start moving forward.
Thanks again all of you who read and have been encouraging me with comments, emails, prayers, positive thoughts, and all the above. Now the real fun can finally begin.
Peace,
Ben
Saturday, November 21, 2009
The Battery
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
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
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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