01/31/09 – I am home from my 6th and hopefully my final chemo treatment. Although I am feeling very tired, I am also feeling great at the same time and I can not tell you how great it is to be home. My treatment went off without a hitch. Today makes day 6 of my 21 day cycle. I typically run into infections between days 12 and 15 (February 6 through February 10). I sure hope that I can get through this period without an infection for a change. I just need to keep positive.
I do have to say that I left the hospital with mixed feelings. YES, I hope I am done and that I am now on my road back to a normal life. I must also say that I feel a little sadness. The nurses and the hospital staff have been so good to me over my treatments and infections that I will truly miss them. Their commitment and passion toward getting people through difficult times is simply amazing. As I left today I offered my assistance for the future. To help speak with people in a similar situation, visit with patients who are not as lucky as me to have such great family and friends and to maybe even bring my guitar and guitar buddies to entertain during certain times of the year. All my nurse friends were glad to hear this and said I was welcome to return anytime as long as it was as a visitor and not as a patient.
I guess my next big challenge is to stay in remission. I am sure that the next steps for me will be to get a better understanding of what the future holds for me and what my on going follow up regiment will be.
My next follow up appointment with Dr. Goy is scheduled for Tuesday, February 3rd.
More to come…
http://mantlecell.blogspot.com/
Saturday, January 31, 2009
Monday, January 26, 2009
Platelets are not quite 100 but good enough to move forward
01/26/09 – Today I had a check up at the Cancer Center to see if I am ready to begin my next and hopefully last chemo therapy treatment. My platelets came back at 97. I initially was worried that I would again be delayed. To my surprise my doctors viewed the 97 count as being close enough. Based on this I received my outpatient treatment and will be checking into the hospital tomorrow. I am tentatively scheduled to be released from the hospital on Saturday, January 31st.
As weird as it might sound I am happy to start this treatment because it represents what I view the beginning of the end of my chemo. I also approach this treatment with some hesitation. I know I need to keep positive but I do have some fear over another possible infection. I have had infections with all but one of my treatments. I have been in the hospital 5 times for chemo therapy but I have also been in the hospital another 6 times with infections. The law of averages tells me that another infection may be in my future. I am not sure how many more infections I will be able to handle. I know that I must have faith and simply put myself in God’s hands and hope and pray for the best outcome. After all, how great would it be to complete my treatments without any infections?
My journey with Mantle Cell sometimes makes me think of the great and popular poem by Mary Stevenson called "Footprints in the Sand". It is my pleasure to share it with you.
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
More to come...
http://mantlecell.blogspot.com/
As weird as it might sound I am happy to start this treatment because it represents what I view the beginning of the end of my chemo. I also approach this treatment with some hesitation. I know I need to keep positive but I do have some fear over another possible infection. I have had infections with all but one of my treatments. I have been in the hospital 5 times for chemo therapy but I have also been in the hospital another 6 times with infections. The law of averages tells me that another infection may be in my future. I am not sure how many more infections I will be able to handle. I know that I must have faith and simply put myself in God’s hands and hope and pray for the best outcome. After all, how great would it be to complete my treatments without any infections?
My journey with Mantle Cell sometimes makes me think of the great and popular poem by Mary Stevenson called "Footprints in the Sand". It is my pleasure to share it with you.
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
More to come...
http://mantlecell.blogspot.com/
Friday, January 23, 2009
Final Treatment, Take Two
01/21/09 – I went to Hackensack to get another IV dose of antibiotics for the rare bacteria found in my PICC line. I also had my Platelets checked. They are now at 86. I have to believe that I will be able to start my last chemo treatment pretty soon.
01/23/09 – Today I had another IV dose of antibiotics for the rare bacteria found in my PICC line. Being I am doing well the doctors decided that today’s dose would be my last one. I still will be on IV antibiotics at home for the staff infection for about another week.
My platelets were checked again and are now at 95. Being this is so close to 100 I have been tentatively scheduled to begin my last treatment on Monday, January 26th as an out patient and to be in the hospital Tuesday, January 27th through Saturday, January 31st. This all hinges on me having a platelet count of 100 on Monday. My doctors are pretty certain that I should be able to get there but of course we will not know for sure until we see it for sure. Dr. Goy believes that exercise helps increase platelets so I plan on spending a lot of time on my stationary bike the next couple of days.
As I am preparing to embark on what I hope to be my last treatment and hopefully a road to good health, I think it is important that I take time to ask for God’s help for a successful final treatment.
Lord, look upon me with eyes of mercy, may your healing hand rest upon me, may your lifegiving powers flow into every cell of my body and into the depths of my soul, cleansing, purifying, restoring me to wholeness and strength for service in your Kingdom. Amen.
More to come…
http://mantlecell.blogspot.com/
01/23/09 – Today I had another IV dose of antibiotics for the rare bacteria found in my PICC line. Being I am doing well the doctors decided that today’s dose would be my last one. I still will be on IV antibiotics at home for the staff infection for about another week.
My platelets were checked again and are now at 95. Being this is so close to 100 I have been tentatively scheduled to begin my last treatment on Monday, January 26th as an out patient and to be in the hospital Tuesday, January 27th through Saturday, January 31st. This all hinges on me having a platelet count of 100 on Monday. My doctors are pretty certain that I should be able to get there but of course we will not know for sure until we see it for sure. Dr. Goy believes that exercise helps increase platelets so I plan on spending a lot of time on my stationary bike the next couple of days.
As I am preparing to embark on what I hope to be my last treatment and hopefully a road to good health, I think it is important that I take time to ask for God’s help for a successful final treatment.
Lord, look upon me with eyes of mercy, may your healing hand rest upon me, may your lifegiving powers flow into every cell of my body and into the depths of my soul, cleansing, purifying, restoring me to wholeness and strength for service in your Kingdom. Amen.
More to come…
http://mantlecell.blogspot.com/
Tuesday, January 20, 2009
I Don’t Know Where I Pick Up These Things
01/19/09 – I received a call from the Cancer Center that they needed to see me today regarding my most recent infection. It seems that they have fully identified this mystery bacteria and need to alter my antibiotics. The bacteria is Microbacterium Fortuitum Complex. It is very rare. Dr. Sebti, who is one of the primary doctors of the Center for Infectious Deceases in Hackensack University Medical Center, said that this is a bacteria that they see only about once every two years. Again, it is very rare and they have no idea on how I ended up with it (if I only had this kind of luck with the Lottery). He did say that if I was not a chemo patient that they would be very concerned, but being that I am, my immune system is subject to pick up just about anything. The good news is that I am not running any fevers and this will not be a cause for delaying my next, hopefully last, chemo treatment.
The other thing I learned yesterday was that my platelets are now up to 79. Only a couple of days ago they were 55, so they are climbing towards the 100 number I need to start chemo. Hopefully I will be able to start chemo sometime this week.
More to come…
http://mantlecell.blogspot.com/
The other thing I learned yesterday was that my platelets are now up to 79. Only a couple of days ago they were 55, so they are climbing towards the 100 number I need to start chemo. Hopefully I will be able to start chemo sometime this week.
More to come…
http://mantlecell.blogspot.com/
Tuesday, January 13, 2009
More Delays
01/05/09 – After a day of feeling well I settled into watching TV. Around 11:00 PM I felt a little chill. It seemed I was beginning to run a fever
01/06/09 – Around 12:00 AM my temp was up to 102.5. We headed out to the hospital. Upon arriving at the hospital my temp was up to 103.5. I was admitted into the hospital and they started running tests.
01/07/09 – The tests are starting to be returned. This is a new infection was identified as a staff infection in my PICC line. The PICC line was immediately removed. They started treating me with antibiotics and my fever was lowered. If all goes well I should be able to go home tomorrow.
01/08/09 – I looks like I am not going home after all. Another bacteria/infection was found in one of my blood cultures. This is a rare bacteria that my doctors are not familiar with. Although my temps are now normal they do not want me to go home until the bacteria is better identified. It now does not seem that I will be going home until after the weekend, maybe Monday 01/12/09.
01/09/09 through 01/11/09 – I remain in the hospital, feeling well, being bored.
01/12/09 – The doctors really do not want to send me home being they still have not fully identified the bacteria that was in my blood. After some thought, and some of suggestions from me, it is decided I can go home on intravenous antibiotics. A new PICC line was surgically installed. I made it home around 8:00PM. As always, it is great to be home. I will not be able to begin my (hopefully) last chemo treatment until this course of antibiotics has been completed. I have an appointment with Dr. Sebti (my Infectious Decease Doctor) on 01/20/09 to see where I stand with this bacteria. My guess is that there will be more information at that time as to the nature of what the bacteria was. I also will be meeting with Dr. Goy on the same day.
Currently my platelets are at 28 but they need to be 100 for me to begin my next treatment. I have until the 20th to get them up to the necessary levels.
More to come…
http://mantlecell.blogspot.com/
01/06/09 – Around 12:00 AM my temp was up to 102.5. We headed out to the hospital. Upon arriving at the hospital my temp was up to 103.5. I was admitted into the hospital and they started running tests.
01/07/09 – The tests are starting to be returned. This is a new infection was identified as a staff infection in my PICC line. The PICC line was immediately removed. They started treating me with antibiotics and my fever was lowered. If all goes well I should be able to go home tomorrow.
01/08/09 – I looks like I am not going home after all. Another bacteria/infection was found in one of my blood cultures. This is a rare bacteria that my doctors are not familiar with. Although my temps are now normal they do not want me to go home until the bacteria is better identified. It now does not seem that I will be going home until after the weekend, maybe Monday 01/12/09.
01/09/09 through 01/11/09 – I remain in the hospital, feeling well, being bored.
01/12/09 – The doctors really do not want to send me home being they still have not fully identified the bacteria that was in my blood. After some thought, and some of suggestions from me, it is decided I can go home on intravenous antibiotics. A new PICC line was surgically installed. I made it home around 8:00PM. As always, it is great to be home. I will not be able to begin my (hopefully) last chemo treatment until this course of antibiotics has been completed. I have an appointment with Dr. Sebti (my Infectious Decease Doctor) on 01/20/09 to see where I stand with this bacteria. My guess is that there will be more information at that time as to the nature of what the bacteria was. I also will be meeting with Dr. Goy on the same day.
Currently my platelets are at 28 but they need to be 100 for me to begin my next treatment. I have until the 20th to get them up to the necessary levels.
More to come…
http://mantlecell.blogspot.com/
Monday, January 5, 2009
Treatment 6/Cycle 3B DELAYED
12/29/08 – I had a follow up appointment. My counts all look good except my platelet counts are a little low (58). It is expected that they will naturally get to my targeted number (100) by the time I begin my next treatment on 1/5/09.
Also there was some good news and some bad news. The good news was I am free of the infections and bacteria that have been haunting me with my past treatments. The bad news was that I now have a new infection called VRE. I am told that it is not a huge deal and it will go away in time. The strange thing about this infection is that it is caused by one of the antibiotics that I am on.
12/31/08 – I had a great New Years Eve with family.
1/1/09 – I had a great New Years Day with family. No infections that require hospitalization.
1/5/09 – I woke up this morning very excited. Today I will begin, what I hope to be, my last treatment. As always my visit to the Cancer Center begins with a blood test that checks my counts. They looked good except for my platelets again. They are now at 77 but must me at 100 for my treatment to start. In the past I would be given a platelet transfusion to increase my platelet level but this being late in my treatments the doctors need to see my platelets rebound naturally. I unfortunately can not start my treatments today. We rescheduled to try again on 1/7/09. Dr. Goy said the best way to get the platelet up is with activity. I guess I will need to exercise for the next two days straight.
What lesson did I get from today? In the words of Woody Allen:
“If you want to make God laugh, tell him about your plans.”
http://mantlecell.blogspot.com/
Also there was some good news and some bad news. The good news was I am free of the infections and bacteria that have been haunting me with my past treatments. The bad news was that I now have a new infection called VRE. I am told that it is not a huge deal and it will go away in time. The strange thing about this infection is that it is caused by one of the antibiotics that I am on.
12/31/08 – I had a great New Years Eve with family.
1/1/09 – I had a great New Years Day with family. No infections that require hospitalization.
1/5/09 – I woke up this morning very excited. Today I will begin, what I hope to be, my last treatment. As always my visit to the Cancer Center begins with a blood test that checks my counts. They looked good except for my platelets again. They are now at 77 but must me at 100 for my treatment to start. In the past I would be given a platelet transfusion to increase my platelet level but this being late in my treatments the doctors need to see my platelets rebound naturally. I unfortunately can not start my treatments today. We rescheduled to try again on 1/7/09. Dr. Goy said the best way to get the platelet up is with activity. I guess I will need to exercise for the next two days straight.
What lesson did I get from today? In the words of Woody Allen:
“If you want to make God laugh, tell him about your plans.”
http://mantlecell.blogspot.com/
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