As I go through my treatments there are somethings that I really do not want to miss out on. One of them is taking my oldest daughter off to college for the first time. In order to pull this off Dr. Goy had to be willing to be flexible with the scheduling of my next treatment and he was. Also, I had to be recovered from my fever, which I am. Everything seemed to fall into place perfectly and today bringing my daughter Jill to college became a reality. We all had a great day driving to Rutgers and setting up her room. Today was one of those proud father moments (truly a golden moment) that I will remember for the rest of my life. I thank God for helping make this happen.
Next on my journey is my 2nd chemo therapy treatment. It is looking like it will be late next week. I have an appointment with Dr. Goy On Wednesday, September 3rd. If all goes well my next treatment can start on Thursday, September 4th.
More to come...
http://mantlecell.blogspot.com/
Saturday, August 30, 2008
Monday, August 25, 2008
Every Cloud has a Silver Lining
From the beginning of my journey I have told myself that I should not ever get “too up” or “too down”. This helps keep me balanced emotionally as I go through treatments. Another thing that goes with that is the expression “take things a day at a time”. I would like to change this to say “take things a moment at a time”. The way I see it is there are so many things that fill our days. A day can be filled with those passing moments where everything remains status quo. Some moments can be those pure golden moments that will make us smile for many years to come. And yes, some moments can be very challenging to get through. In all these cases I believe God is with us. God is smiling with us during our golden moments and embracing us as we go through our challenges.
This past week I hit a small bump in the road. At the time you read this I have cleared the bump, left it in the dust, and I am positively moving forward. I am going to briefly explain what happened being these are the types of things that can happen while going through chemo therapy.
8/16/2008 – Had a great day. My white cell counts are still very low but I feel very strong. I performed all my activities without any issues.
8/17/2008 – Another great day. My counts are still very low but again I feel strong. I just can not be around a lot of people. To change things up a little I played tennis with my daughter and felt great doing it. I spent the rest of the day swimming and enjoying the great weather. At night time I felt a little chill so I went to bed early.
8/18/08 – As I slept my wife reached over and felt my head and it was warm. We took my temperature at 3:00 AM and I had a fever. Going through chemo the doctors do not want our temps to be higher than 100.5. I was 101.5. We called into the Hackensack University Medical Center and were told to come into the emergency room. We arrived at Hackensack at 4:00 and my temp was now 102.3. I was immediately put on intravenous antibiotics and moved to a room. The question that had to be answered was “what caused the fever?”
When our blood counts are low, infections can come from two places: things outside us (other people) and things inside us (bacteria and other things that are inside us). My infection was caused from within and now we had to knock it out of me.
8/19/08 – 8/24/08 - I spent the next few days on intravenous. The hospital staff was simply amazing. Dr. Goy stopped by a number of times the make sure I was keeping my head up and stressed that this is just a small bump that happens sometimes and we will get past it. He, of course was right.
8/25/08 – I was released from the hospital feeling great and ready to move forward. Throughout the week I had noticed that the inevitable hair loss had started. When we arrived home Sue shaved my head. I now have a new look. It is not as bad as I thought it would be.
In this hospital stay I met another person that is in the same study. We hit it off great. I think we will be good friends.
Another thing that I am excited to share with you is in the course of treating me and running tests, a Chest CT Scan was run that showed my tumors have gotten smaller since my first treatment. This is very encouraging.
Although I hit this little bump in the road, I came away from it with more positives than negatives. A met new friend and I have the first hard evidence that my treatments are working. So, I guess it is true that every cloud has a silver lining.
We are still working out the details but it looks like my next in hospital treatments will be either the first or second week of September.
More to come…
http://mantlecell.blogspot.com/
This past week I hit a small bump in the road. At the time you read this I have cleared the bump, left it in the dust, and I am positively moving forward. I am going to briefly explain what happened being these are the types of things that can happen while going through chemo therapy.
8/16/2008 – Had a great day. My white cell counts are still very low but I feel very strong. I performed all my activities without any issues.
8/17/2008 – Another great day. My counts are still very low but again I feel strong. I just can not be around a lot of people. To change things up a little I played tennis with my daughter and felt great doing it. I spent the rest of the day swimming and enjoying the great weather. At night time I felt a little chill so I went to bed early.
8/18/08 – As I slept my wife reached over and felt my head and it was warm. We took my temperature at 3:00 AM and I had a fever. Going through chemo the doctors do not want our temps to be higher than 100.5. I was 101.5. We called into the Hackensack University Medical Center and were told to come into the emergency room. We arrived at Hackensack at 4:00 and my temp was now 102.3. I was immediately put on intravenous antibiotics and moved to a room. The question that had to be answered was “what caused the fever?”
When our blood counts are low, infections can come from two places: things outside us (other people) and things inside us (bacteria and other things that are inside us). My infection was caused from within and now we had to knock it out of me.
8/19/08 – 8/24/08 - I spent the next few days on intravenous. The hospital staff was simply amazing. Dr. Goy stopped by a number of times the make sure I was keeping my head up and stressed that this is just a small bump that happens sometimes and we will get past it. He, of course was right.
8/25/08 – I was released from the hospital feeling great and ready to move forward. Throughout the week I had noticed that the inevitable hair loss had started. When we arrived home Sue shaved my head. I now have a new look. It is not as bad as I thought it would be.
In this hospital stay I met another person that is in the same study. We hit it off great. I think we will be good friends.
Another thing that I am excited to share with you is in the course of treating me and running tests, a Chest CT Scan was run that showed my tumors have gotten smaller since my first treatment. This is very encouraging.
Although I hit this little bump in the road, I came away from it with more positives than negatives. A met new friend and I have the first hard evidence that my treatments are working. So, I guess it is true that every cloud has a silver lining.
We are still working out the details but it looks like my next in hospital treatments will be either the first or second week of September.
More to come…
http://mantlecell.blogspot.com/
Friday, August 15, 2008
Follow Up Outpatient Treatment
8/13/08 - I am starting to get my strength back. I had a great day of working from home, exercising and activities. My friend Larry stopped by for a visit. He asked if I have played my guitar since this whole journey started... I haven't. He gave me a new assignment. I need to play the guitar each day for at least 10 minutes. Music is a great healing tool for sure and I think I will tackle this new assignment with much enthusiasm.
Another friend Rob offered me a an exercise to work each day. During quiet time I should picture little PAC Men attacking my tumors and taking them away. This is another thing I will add to my daily activities.
8/14/08 - This was another great day. I worked from home, exercised, played guitar, and did my PAC Man imagining session. I felt so good today that I actually took a field trip on my own to St. Francis de Sales and attended a Church meeting
8/15/08 - I had a follow up appointment and Hackensack Hospital. I was advised by Judy and Dr. Feldman (Dr. Goy's partner) that my white cell counts are officially in the poop-er (this is a medical term for being very, very low). I am still feeling great and continuing my daily activities. I just need to watch where I go being I am very susceptible infection. I also received a chemo push today. This may tire me out for the next couple of days.
The amount of people who have been praying for me has been overwhelming and very much appreciated.
My next appointment is Tuesday, August 19th.
More to come...
http://mantlecell.blogspot.com/
Another friend Rob offered me a an exercise to work each day. During quiet time I should picture little PAC Men attacking my tumors and taking them away. This is another thing I will add to my daily activities.
8/14/08 - This was another great day. I worked from home, exercised, played guitar, and did my PAC Man imagining session. I felt so good today that I actually took a field trip on my own to St. Francis de Sales and attended a Church meeting
8/15/08 - I had a follow up appointment and Hackensack Hospital. I was advised by Judy and Dr. Feldman (Dr. Goy's partner) that my white cell counts are officially in the poop-er (this is a medical term for being very, very low). I am still feeling great and continuing my daily activities. I just need to watch where I go being I am very susceptible infection. I also received a chemo push today. This may tire me out for the next couple of days.
The amount of people who have been praying for me has been overwhelming and very much appreciated.
My next appointment is Tuesday, August 19th.
More to come...
http://mantlecell.blogspot.com/
Tuesday, August 12, 2008
Follow Up Appointment with Dr. Goy
8/11/08 -- I must admit that today I was a bit exhausted. I did bike a little but not the 20 minute sessions 3 times per day I was doing in the hospital. I guess when I am tired I should rest. I will ask Dr. Goy about this when I see him.
8/12/08 - I went to Hackensack University Medical Center for a follow up appointment with Dr. Goy. He said that I am doing great and that my counts could not be any better. He was very up beat and finally addressed my long term prognosis question. "You just completed your first cycle and I said you are doing great... isn't that good enough?" Dr Goy is always one to give a tap on the shoulder, a knee in the leg, a small hug and even a small BOP on the head. All in keeping his patients as positive as possible. He does feel very confident that he can handle anything that comes our way. I also sense that he does not want me spending my energy thinking about anything but one day at a time.
In addition Dr. Goy addressed me feeling tired. He said that when I feel tired that I should push even harder to work out. That is how my body will best combat everything that is going on in me. With today being a bad sinus day I also learned of Dr. Goy's theory on dealing with sinus pain. He said "do you swim? Swimming and water are the best relief for sinuses". He suggested that I go for a swim when I get home.
I met another fellow Mantle Cell Study patient today. He is a 67 old man and he has completed all his treatments. He looked GREAT! He an his wife went dancing last night and plan to do so again tonight. It was great to see such a happy couple. True evidence of the light at the end of the tunnel.
I had some more good news today. I had originally been scheduled to be in the hospital for my next treatments on 8/30 but Dr. Goy gave me the OK to bring my daughter Jill to college on that day. He said it is OK for me to delay my treatments a few days.
Lastly, today was the first day I would start getting my Neupogen shots. These are shots that I need to get for 10 days after chemo. The interesting thing is that my wife Sue has to give them to me at home. Now this for sure was an adventure! Actually once we figured it out, with help of my daughter Jill, it was fine. We should be pros at this in no time.
My next appointment with Dr. Goy is 8/15 where I will be getting an out patient chemo push.
More to come...
http://mantlecell.blogspot.com/
8/12/08 - I went to Hackensack University Medical Center for a follow up appointment with Dr. Goy. He said that I am doing great and that my counts could not be any better. He was very up beat and finally addressed my long term prognosis question. "You just completed your first cycle and I said you are doing great... isn't that good enough?" Dr Goy is always one to give a tap on the shoulder, a knee in the leg, a small hug and even a small BOP on the head. All in keeping his patients as positive as possible. He does feel very confident that he can handle anything that comes our way. I also sense that he does not want me spending my energy thinking about anything but one day at a time.
In addition Dr. Goy addressed me feeling tired. He said that when I feel tired that I should push even harder to work out. That is how my body will best combat everything that is going on in me. With today being a bad sinus day I also learned of Dr. Goy's theory on dealing with sinus pain. He said "do you swim? Swimming and water are the best relief for sinuses". He suggested that I go for a swim when I get home.
I met another fellow Mantle Cell Study patient today. He is a 67 old man and he has completed all his treatments. He looked GREAT! He an his wife went dancing last night and plan to do so again tonight. It was great to see such a happy couple. True evidence of the light at the end of the tunnel.
I had some more good news today. I had originally been scheduled to be in the hospital for my next treatments on 8/30 but Dr. Goy gave me the OK to bring my daughter Jill to college on that day. He said it is OK for me to delay my treatments a few days.
Lastly, today was the first day I would start getting my Neupogen shots. These are shots that I need to get for 10 days after chemo. The interesting thing is that my wife Sue has to give them to me at home. Now this for sure was an adventure! Actually once we figured it out, with help of my daughter Jill, it was fine. We should be pros at this in no time.
My next appointment with Dr. Goy is 8/15 where I will be getting an out patient chemo push.
More to come...
http://mantlecell.blogspot.com/
Sunday, August 10, 2008
My 1st Treatment
8/5/08 - I checked into Hackensack University Medical Center with out any issues. I was started on my pretreatment drugs right away and soon was receiving my first dose of a chemo. I was told that there was an 85% chance I would get nauseous but I did not and I made it through the day without getting sick.
The nurses are all great and the food was much better than I would have ever expected. It is much like ordering room services from a menu.
8/6/08 - The day started with a sample of blood being taken at 3:30AM. The nurse reiterated how well I did the day before. I will now be getting a different chemo medicine that will be given every 6 hours for the next 3 days.
Dr. Goy and the research nurse Judy stopped by to see how well I have been doing. Judy stops by everyday to check on me. Judy is a wonderful person and a great source of support to both me and my family.
Dr. Goy wants his patients to be as active as possible. He says that in real-estate it's "location, location, location" but here it is "move, move, move". He started me on a stationary bike that I would go on for 20 minutes, 3 times per day. I averaged about 6.5 miles of biking per 20 minutes. I may have been over doing it a bit but so far I feel pretty well and I can do it. I am told that once the chemo starts to kick in more I will likely slow down a bit. Only time will tell with this and I hope to be able to continue being as active as possible. Maybe the stronger I get now the stronger I will stay over time. I am no doctor but this seems to make sense.
Another thing that seems real important is my mouth maintenance. Chemo treatments targets the body's cells that are most active (both good and bad). This includes the month stomach and hair (this is why most people lose their hair). As it kills the good cells in my mouth it open me up to mouth infections that could cause painful sores. Keeping my mouth maintenance up will be a vital part of daily process.
8/7/08 - They took my blood about 4:00 AM. I worked out on the bike another 3 times. I would also receive two more does of the chemo (every 12 hours).
Today I met two other patients in the same clinical study. I think we will become good friends. One was in his last treatment cycle and he seems to be doing well. The other was in cycle 3 and was a very upbeat person.
I met with Judy again. She said all my counts are doing well but I should see a decline in my white blood counts over the next few days.
8/8/08 - They took my blood about 4:00 AM again. I also worked out on the bike 3 times. Received the last two every 12 hour treatments.
8/9/08 - They took my blood at 5:00 AM. Today I will receive 3 different chemo treatments and then I can go home. I again can not say enough how great everyone on the hospital staff has been to me.
All went well today and I was released on schedule. It is great to be home but I know this is just the beginning of a long journey and I need to take this a day at a time.
8/10/08 - I went to church today at St. Francis de Sales. I was good to get out and great to see everyone but I must admit that I am beginning to get tired. I will relax the rest of today and see what tomorrow has in store for me.
Over this week I have had many guests and well wishes from many of my family and friends. Even with the seriousness of my disease I can not help but feel how lucky I am.
http://mantlecell.blogspot.com/
The nurses are all great and the food was much better than I would have ever expected. It is much like ordering room services from a menu.
8/6/08 - The day started with a sample of blood being taken at 3:30AM. The nurse reiterated how well I did the day before. I will now be getting a different chemo medicine that will be given every 6 hours for the next 3 days.
Dr. Goy and the research nurse Judy stopped by to see how well I have been doing. Judy stops by everyday to check on me. Judy is a wonderful person and a great source of support to both me and my family.
Dr. Goy wants his patients to be as active as possible. He says that in real-estate it's "location, location, location" but here it is "move, move, move". He started me on a stationary bike that I would go on for 20 minutes, 3 times per day. I averaged about 6.5 miles of biking per 20 minutes. I may have been over doing it a bit but so far I feel pretty well and I can do it. I am told that once the chemo starts to kick in more I will likely slow down a bit. Only time will tell with this and I hope to be able to continue being as active as possible. Maybe the stronger I get now the stronger I will stay over time. I am no doctor but this seems to make sense.
Another thing that seems real important is my mouth maintenance. Chemo treatments targets the body's cells that are most active (both good and bad). This includes the month stomach and hair (this is why most people lose their hair). As it kills the good cells in my mouth it open me up to mouth infections that could cause painful sores. Keeping my mouth maintenance up will be a vital part of daily process.
8/7/08 - They took my blood about 4:00 AM. I worked out on the bike another 3 times. I would also receive two more does of the chemo (every 12 hours).
Today I met two other patients in the same clinical study. I think we will become good friends. One was in his last treatment cycle and he seems to be doing well. The other was in cycle 3 and was a very upbeat person.
I met with Judy again. She said all my counts are doing well but I should see a decline in my white blood counts over the next few days.
8/8/08 - They took my blood about 4:00 AM again. I also worked out on the bike 3 times. Received the last two every 12 hour treatments.
8/9/08 - They took my blood at 5:00 AM. Today I will receive 3 different chemo treatments and then I can go home. I again can not say enough how great everyone on the hospital staff has been to me.
All went well today and I was released on schedule. It is great to be home but I know this is just the beginning of a long journey and I need to take this a day at a time.
8/10/08 - I went to church today at St. Francis de Sales. I was good to get out and great to see everyone but I must admit that I am beginning to get tired. I will relax the rest of today and see what tomorrow has in store for me.
Over this week I have had many guests and well wishes from many of my family and friends. Even with the seriousness of my disease I can not help but feel how lucky I am.
http://mantlecell.blogspot.com/
Monday, August 4, 2008
The Eve of My First Treatment
08/04/08 - I will be checking into Hackensack University Medical Center for my first treatments tomorrow. It seems that my cough is getting a little worse each day. I know that the treatments will not be easy but I am also told that soon after the treatments begin my cough should start to go away. I do have a number of mixed feelings with starting my chemo therapy. I am definitely a little scared and nervous, but knowing that starting the treatments is the first step toward fighting my disease I also have feelings of hope and calmness. I guess this is when my pastor's prayer will come in handy:
Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace
I think I am going to be saying this prayer an awful lot.
I am glad that there have been a few days between having my dual porta cath put in and beginning treatments. It did hurt for a couple of days but if is now only a little pinchy due to the small butterfly stitches that will fall out on their own.
I continue to be very thankful for all the out pouring of prayer and support I received from everyone. I truly am very lucky to have such great family and friends.
I will enter my next post when I get home from the hospital over the weekend.
http://mantlecell.blogspot.com/
Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace
I think I am going to be saying this prayer an awful lot.
I am glad that there have been a few days between having my dual porta cath put in and beginning treatments. It did hurt for a couple of days but if is now only a little pinchy due to the small butterfly stitches that will fall out on their own.
I continue to be very thankful for all the out pouring of prayer and support I received from everyone. I truly am very lucky to have such great family and friends.
I will enter my next post when I get home from the hospital over the weekend.
http://mantlecell.blogspot.com/
Friday, August 1, 2008
Dual Port Surgically Installed
8/1/08 - I had my dual porta cath surgically installed today by Dr. Kline. It is directly below by right collar bone. The surgery only took about 40 minutes. My right shoulder area hurts a bit and I have been given pain killers just in case I need them. I will take one to help me sleep but I doubt I will need any tomorrow. This will be where I will receive my chemo treatments through. It will definitely make life much easier on my veins.
This is me venting: I am finding that reading articles on the Internet could be more discouraging than anything. Last night I read that the average life span of someone diagnosed with Mantle Cell Lymphoma is 3 to 5 years. I am sure Dr. Goy would debate this claim being the whole point of the clinical trial I am in is to validate a method to obtain a long term remission. Also, each time I visit Dr. Goy I run into people who are in remission for an extended period of time. Maybe I am drinking from the "Keep Positive Kool-Aid" a little too much but maybe I am not. I certainly plan on having a conversation with Dr. Goy on what he feels my true prognosis is. I do know that when we get news that is not so good and my wife's eyes tear up, Dr. Goy says: "what are you upset about, this is all very treatable". There is no doubt that this is all in God's hands but there is no way I can except this 3 to 5 year message of doom.
On Tuesday, August 5th I will begin my treatments.
More to come...
http://mantlecell.blogspot.com/
This is me venting: I am finding that reading articles on the Internet could be more discouraging than anything. Last night I read that the average life span of someone diagnosed with Mantle Cell Lymphoma is 3 to 5 years. I am sure Dr. Goy would debate this claim being the whole point of the clinical trial I am in is to validate a method to obtain a long term remission. Also, each time I visit Dr. Goy I run into people who are in remission for an extended period of time. Maybe I am drinking from the "Keep Positive Kool-Aid" a little too much but maybe I am not. I certainly plan on having a conversation with Dr. Goy on what he feels my true prognosis is. I do know that when we get news that is not so good and my wife's eyes tear up, Dr. Goy says: "what are you upset about, this is all very treatable". There is no doubt that this is all in God's hands but there is no way I can except this 3 to 5 year message of doom.
On Tuesday, August 5th I will begin my treatments.
More to come...
http://mantlecell.blogspot.com/
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