When I set out on my journey to beat my Mantle Cell Lymphoma I knew the road would not be an easy one. Well, the last week and a half has been pretty tough for me. I will tell you that as I write this I am mostly past the rough spot and feeling well. Here is what I went through:
10/09/08 – I am feeling well, even took a short shopping trip with my daughter. As I walked through the house later that night I had the feeling of a shin split in my left leg.
10/10/08 – I woke up feeling weak. My left leg was now very painful and started to swell. My wife checked my temperature and it was 101.5. Whenever my temperature exceeds 100.5 we are suppose to call into the Cancer Clinic. We called and were advised to come in right away.
During the hour ride to the clinic I felt weaker. When we arrived I had to get a wheel chair to transport me to the clinic. My temperature was now 103.5. It was found that I had an infection (E. coli). I was immediately started on intravenous antibiotics. In the meantime the clinic had me admitted me into the hospital in my typical Oncology ward.
Once I was in my hospital room things started to get crazy. I went Sepsis. My blood pressure was very low and I was packed in ice to bring down my fever. It was at this point where it was decided to move me into the Intensive Care Unit (ICU). ICU was able to control my blood pressure, temp and continue me on antibiotics.
What a day this has been! I put one heck of a scare in my wife.
Here I sit in ICU with medicine to control my blood pressure, antibiotics for my infection and a swollen painful leg that was diagnosed as Cellulitis.
An interesting thing to note: I had the same infection (E. coli) and Cellulitis with my first chemo cycle. Once I am better we will have to find out why this keeps happening.
10/11 – 10/12/08 – I continued to be treated in ICU. My fever and infection are now under control. My leg is still swollen but becoming less painful.
10/13/08 – Being I am no longer at risk I am moved back to the Oncology ward.
10/14/08 – I am discharged. I will have to get in-home intravenous antibiotics for the next ten days. It is GREAT to be home.
10/15 – 10/16/08 – I am starting in run low grade fevers again. It seems that I get higher fevers as the day go on.
10/17/08 – My fever goes above 100.5. We called the Cancer Center and are told to go to the hospital. I am again admitted.
10/18/08 – I am given a CT Scan to see if there is anything causing my fever and infection. I came back clear. I was also given a Doppler Test on my legs which checks for blood clots. This came back clear also.
10/19/08 – An infection called C Def was found in me. This is the culprit causing my fevers. I am put on a second antibiotic that I will be on for 10 days.
10/20/08 – I am given a test called a TEE. This checks behind the heart for infection, leaks etc… This came back clear.
Being I am on the appropriate antibiotics I can now be discharged. Again, it is great to be home.
This has been a tough run but we are getting through it. I constantly remind myself that the chemo therapy is making excellent progress. I still have about a week before I am done with the antibiotics. This has caused a delay in my chemo treatments. My next cycle is 4(2B) but it is unclear as to when this will begin. I have an appointment on Friday, October 24th. I should know more then.
Sure I am a little discouraged by the past week and a half but I remain focused on getting well and resuming my treatments
“As believers we have no business talking doubt, failure or fear! We should talk faith!”
More to come…
http://mantlecell.blogspot.com/
Tuesday, October 21, 2008
Tuesday, October 7, 2008
Quick Update - 10/7/08
10/3/08 - 10/5/08 (days 8 -10 of the 21 day cycle) - I have had a few days where I have been weak and tired. I seem to get stronger each day which seems to be the trend I hit after getting released from the hospital.
10/6/08 (day 11 of the 21 day cycle) - I had an outpatient visit. It included a quick chemo push and a blood test. My blood looked good except for my white blood cell count which was 0.1. This is expected but it also means I need to be careful of who and what I am in contact with. My wife gives me Neupogen shots each day to help build up my counts. History tells us that I should be back to normal counts in a couple of days. The interesting thing with this period of the cycle is that the times when I start to feel strong I can not be around people due to my compromised immune system. I guess it is just one of those things.
My next appointment when I get my blood tested is 10/10/08. If all goes well we will start planning for my next cycle (4=2B) which can begin within a week from then (10/17).
More to come...
http://mantlecell.blogspot.com/
10/6/08 (day 11 of the 21 day cycle) - I had an outpatient visit. It included a quick chemo push and a blood test. My blood looked good except for my white blood cell count which was 0.1. This is expected but it also means I need to be careful of who and what I am in contact with. My wife gives me Neupogen shots each day to help build up my counts. History tells us that I should be back to normal counts in a couple of days. The interesting thing with this period of the cycle is that the times when I start to feel strong I can not be around people due to my compromised immune system. I guess it is just one of those things.
My next appointment when I get my blood tested is 10/10/08. If all goes well we will start planning for my next cycle (4=2B) which can begin within a week from then (10/17).
More to come...
http://mantlecell.blogspot.com/
Thursday, October 2, 2008
Home from Cycle 3 (2A)
9/30/08 – I returned home from the hospital this evening. The hospital stay went very smoothly and I am feeling well. My cycle 3 (2A) now will begin my 16 days of home care and outpatient visits.
10/1/08 and 10/2/08 – As with my last two hospital stays I am feeling a little tired and weak my first couple of days at home. I expect to get more energetic over the next couple of days.
While in the Hospital my niece Lauren visited. She told me that she and some of her friends ran in the “2008 – 15th Annual Newport – Liberty Water Front Run” on September 28th and represented me and my fight with Mantle Cell Lymphoma. They collected donations from friends and family for Dr. Goy’s foundation in the amount of $3400.00.
Lauren also gave me a shirt as I gift that says:
F.A.I.T.H. – Fighting Against Illness Through Him
I have the courage to fight cancer because I believe.
Winning the fight and staying mentally strong, I will prevail!
BECAUSE OF JESUS… I BELIEVE!
This is more evidence on how lucky I am.
More to come…
http://mantlecell.blogspot.com/
10/1/08 and 10/2/08 – As with my last two hospital stays I am feeling a little tired and weak my first couple of days at home. I expect to get more energetic over the next couple of days.
While in the Hospital my niece Lauren visited. She told me that she and some of her friends ran in the “2008 – 15th Annual Newport – Liberty Water Front Run” on September 28th and represented me and my fight with Mantle Cell Lymphoma. They collected donations from friends and family for Dr. Goy’s foundation in the amount of $3400.00.
Lauren also gave me a shirt as I gift that says:
F.A.I.T.H. – Fighting Against Illness Through Him
I have the courage to fight cancer because I believe.
Winning the fight and staying mentally strong, I will prevail!
BECAUSE OF JESUS… I BELIEVE!
This is more evidence on how lucky I am.
More to come…
http://mantlecell.blogspot.com/
Friday, September 26, 2008
Handling My Treatments Beautifully
I can not tell you how much I appreciate all the thoughts, prayers, and support I have received from all my family and friends. I really believe that all the prayers are working. My treatments are progressing nicely. Things are looking and feeling better every day and there truly is a light at the end of the tunnel.
9/24/08 – I had some tests today that will show how my treatments are progressing. I should get the results in a couple of days.
9/26/08 – I had an appointment with Dr. Goy where I had a check up (my blood counts were all normal) and received my out patient Chemo Therapy which is the beginning of my next treatment cycle (cycle 3 = 2A).
Also I received GREAT news today. According to Dr. Goy, I am handling my treatments beautifully. I am at a point where I am almost in full remission. In addition, my tumors have been greatly reduced in size. All this after only two treatment cycles. Of course I know there is more work to be done and only 100% remission can be considered a complete success, but I am almost there. With another 4 to 6 cycles ahead of me I am confident I will be as good as new.
It is a great feeling to see Dr. Goy and his staff so happy with my results. More importantly they are truly happy for me and my family. With a rare decease like Mantle Cell Lymphoma, I can not tell you how lucky I am to have such a great doctor so close to my home. People literally travel from all over the world to see him. I can thank God that he is only an hour away from me.
Tomorrow I will check into the hospital for my outpatient chemo therapy. Although chemo cycles vary by patient, by cancer, by treatment type, etc… my treatment cycles span 21 days and looks like the following:
http://mantlecell.blogspot.com/
9/24/08 – I had some tests today that will show how my treatments are progressing. I should get the results in a couple of days.
9/26/08 – I had an appointment with Dr. Goy where I had a check up (my blood counts were all normal) and received my out patient Chemo Therapy which is the beginning of my next treatment cycle (cycle 3 = 2A).
Also I received GREAT news today. According to Dr. Goy, I am handling my treatments beautifully. I am at a point where I am almost in full remission. In addition, my tumors have been greatly reduced in size. All this after only two treatment cycles. Of course I know there is more work to be done and only 100% remission can be considered a complete success, but I am almost there. With another 4 to 6 cycles ahead of me I am confident I will be as good as new.
It is a great feeling to see Dr. Goy and his staff so happy with my results. More importantly they are truly happy for me and my family. With a rare decease like Mantle Cell Lymphoma, I can not tell you how lucky I am to have such a great doctor so close to my home. People literally travel from all over the world to see him. I can thank God that he is only an hour away from me.
Tomorrow I will check into the hospital for my outpatient chemo therapy. Although chemo cycles vary by patient, by cancer, by treatment type, etc… my treatment cycles span 21 days and looks like the following:
- Day 1: Outpatient Chemo - The first day of the cycle I receive outpatient chemo therapy. This lasts about 3-4 hours and then I get to go home.
- Days 2-6: In the hospital - The next 4 to 5 days I spend in the hospital receiving chemo therapy treatments
- Days 7-21: Home Care, Recovery and Follow up - Over the next 15-16 days I will take an array of medications and average two office visits per week. The key is checking my blood counts to make sure all is well. If my counts are off my caretakers will react by taking necessary actions (transfusions, additional medications, additional stay in hospital, etc…). Over these 15-16 days at home I have experienced the following:
- I feel pretty tired my first couple of days home with me regaining my strength each day.
- While I am home it is expected that around days 10 through 14 (of the 21 cycle) my white blood cell counts will drop (this is supposed to happen). This means that my immune system is weak and I need to stay away from germs, bacteria etc… until my counts are back to normal. During this time is when I should avoid being in contact with other people.
- My counts should return to normal between days 15 and 17. My guess is this will vary with each cycle.
- Once my blood counts are back to normal we start planning for the next cycle.
http://mantlecell.blogspot.com/
Saturday, September 20, 2008
Unplanned Office Visit
9/19/08 - I woke up not feeling so well today. We immediately spoke with our crack medical team who wanted to see me ASAP. I was given a blood transfusion and started to feel better almost at once. In checking me out we received some good news is that my blood counts seem to have improved.
9/20/08 - I feel so much better today. I have lots of energy and no sick feelings. I have to say that no matter what I am encountered with Dr. Goy's team knows how to treat it.
I am getting ready for my next cycle (cycle 3 = 2A) towards the end of next week. In the mean time I will be getting a number of tests (on Wednesday) to see how well things are progressing. I fully expect to hear more good news.
Below is a lyric to a song that is now my ring tone. It gives a very positive message.
Tunnel : Song by Third Day
I won’t pretend to know what you’re thinking
I can’t begin to know what you’re going through
I won’t deny the pain that you’re feeling
But I’m gonna try and give a little hope to you
Just remember what I’ve told you
There’s so much you’re living for
There’s a light at the end of this tunnel
There’s a light at the end of this tunnel
For you, for you
There’s a light at the end of this tunnel
Shinin’ bright at the end of this tunnel
For you, for you
So keep holdin’ on
You’ve got your disappointments and sorrows
You ought to share the weight of that load with me
Then you will find that the light of tomorrow
Brings a new life for your eyes to seeSo remember what I’ve told you
There’s so much you’re living for
More to come...
http://mantlecell.blogspot.com/
9/20/08 - I feel so much better today. I have lots of energy and no sick feelings. I have to say that no matter what I am encountered with Dr. Goy's team knows how to treat it.
I am getting ready for my next cycle (cycle 3 = 2A) towards the end of next week. In the mean time I will be getting a number of tests (on Wednesday) to see how well things are progressing. I fully expect to hear more good news.
Below is a lyric to a song that is now my ring tone. It gives a very positive message.
Tunnel : Song by Third Day
I won’t pretend to know what you’re thinking
I can’t begin to know what you’re going through
I won’t deny the pain that you’re feeling
But I’m gonna try and give a little hope to you
Just remember what I’ve told you
There’s so much you’re living for
There’s a light at the end of this tunnel
There’s a light at the end of this tunnel
For you, for you
There’s a light at the end of this tunnel
Shinin’ bright at the end of this tunnel
For you, for you
So keep holdin’ on
You’ve got your disappointments and sorrows
You ought to share the weight of that load with me
Then you will find that the light of tomorrow
Brings a new life for your eyes to seeSo remember what I’ve told you
There’s so much you’re living for
More to come...
http://mantlecell.blogspot.com/
Friday, September 19, 2008
Cycle A versus cycle B
9/10/08 – 9/18/08
I have discussed me going through two cycles to date and that I will have a total of 6 to 8 cycles. When I had cycle 1, in actuality it was considered cycle "1A". Cycle 2 is considered cycle "1B". When I begin my third cycle it will be "2A". The cycles are as follows:
Cycle 1 = 1A
Cycle 2 = 1B
Cycle 3 = 2A
Cycle 4 = 2B
Cycle 5 = 3A
Cycle 6 = 3B
Cycle 7 = 4A
Cycle 8 = 4B
All the “A” cycles include the same medicines and all the “B’s” are the same as well. I can not have a cycle “A” cycle without a “B” cycle following it. Lastly, “A” and “B” cycles include different mixes of medicines
Why did I just go through this? It seems that my body did a better job managing the chemo after effects of cycle “A” than “B”.
It is 9 days since I am out of the hospital and I am still very tired most of the time, I get sick to my stomach when I eat, my white blood cell count is very low (which means I am very susceptible to infection), and my platelets are so low I required a transfusion. This being my first time with a “B” cycle it is very likely it will go smoother next time. Dr. Goy’s medical team does not seem surprised by “B” hitting me the way it has. Cycle “B” is considered to be harder on the patient than cycle “A”.
The most important point with this is that I knew going into to this that it was not going to be a walk in the park. Chemo Therapy is serious business and will very likely be a rough (but very passable) road.
On the positive side, in about six months this will be over and I have every intention to be back as good as new. Also, I must say that through all this I have not been in any pain. I will not let these small bumps in the road get me down. I will keep positive and at my weakest moments I need to push harder and know that Jesus is carrying me as I go through this.
"Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace"
More to come…
http://mantlecell.blogspot.com/
I have discussed me going through two cycles to date and that I will have a total of 6 to 8 cycles. When I had cycle 1, in actuality it was considered cycle "1A". Cycle 2 is considered cycle "1B". When I begin my third cycle it will be "2A". The cycles are as follows:
Cycle 1 = 1A
Cycle 2 = 1B
Cycle 3 = 2A
Cycle 4 = 2B
Cycle 5 = 3A
Cycle 6 = 3B
Cycle 7 = 4A
Cycle 8 = 4B
All the “A” cycles include the same medicines and all the “B’s” are the same as well. I can not have a cycle “A” cycle without a “B” cycle following it. Lastly, “A” and “B” cycles include different mixes of medicines
Why did I just go through this? It seems that my body did a better job managing the chemo after effects of cycle “A” than “B”.
It is 9 days since I am out of the hospital and I am still very tired most of the time, I get sick to my stomach when I eat, my white blood cell count is very low (which means I am very susceptible to infection), and my platelets are so low I required a transfusion. This being my first time with a “B” cycle it is very likely it will go smoother next time. Dr. Goy’s medical team does not seem surprised by “B” hitting me the way it has. Cycle “B” is considered to be harder on the patient than cycle “A”.
The most important point with this is that I knew going into to this that it was not going to be a walk in the park. Chemo Therapy is serious business and will very likely be a rough (but very passable) road.
On the positive side, in about six months this will be over and I have every intention to be back as good as new. Also, I must say that through all this I have not been in any pain. I will not let these small bumps in the road get me down. I will keep positive and at my weakest moments I need to push harder and know that Jesus is carrying me as I go through this.
"Jesus, I believe in you and you will take care of me.
Jesus, I believe in you and you will give me peace"
More to come…
http://mantlecell.blogspot.com/
Thursday, September 11, 2008
My 2nd Treatment
9/5/08 through 9/10/08 – On to my 2nd chemo therapy cycle. Everything went well without any issue. I am now home resting and feeling fine.
What I am finding is that my days in the hospital make me a little stir crazy. It is easy to get bored. Yes, I have continued with my bike riding and walking but I need more to keep me busy. One thing that has helped me is that I have met many people with all different kinds of backgrounds while in the hospital. Some have sad stories and others are trying to remain upbeat. I find talking to other patients helps both me and them. My goal is to try and have a brief conversation with as many patients as possible during my hospital stay. I figure if I start a simple friendly conversation that I could maybe add a little pleasantness into other people’s day. I think overall that I am doing a good job in raising the spirits of those on the floor. Sure there are some very sad situations on the cancer ward. For these cases I offer my prayers to their friends and family. Speaking of prayer I do have a Eucharistic Minister or a Priest visit me each day with Communion. This lifts my spirits significantly.
Did anyone get to see the “Stand Up to Cancer” telethon? This should show you how many people are fighting for cures that are not all that far away. If you think about some of the statistics 1 out of every 2 men and 1 out of every 3 women will be touched by cancer in their lifetime. The good news is that they collected $100 million dollars in donations. It was a great friend (and Goombah) who told my wife and me that God did not give cancer to me but it will be God who will heal me. As I think about that I believe that it is very possible that some of God’s healing powers exists within some of these great doctors I am lucky to have treating me. We always hear how God needs us to be his hands and feet. While in the hospital I have seen medical professionals (volunteers to doctors) taking up the role of compassionate healers. Below are the words to a song that make me think of what Jesus asks of us.
Hands and Feet
An image flashed across my TV screen
Another broken heart comes into view
I saw the pain, and I turned my back
Why can't I do the things I want to?
I am willing yet I'm so afraid
You give me strength
When I say
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
I've abandoned every selfish thought
I've surrender everything I've got
You can have everything I am
And perfect everything I'm not
I am willing, I'm not afraid
You give me strength
When I say...
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
This is the last time
I turn my back on You
From now on I'll go out
Send me where You want me to
I finally have a mission
I promise I'll complete
I don't need excuses
When I am Your hands and feet
I am Your hands and feet
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
More to come…
http://mantlecell.blogspot.com/
What I am finding is that my days in the hospital make me a little stir crazy. It is easy to get bored. Yes, I have continued with my bike riding and walking but I need more to keep me busy. One thing that has helped me is that I have met many people with all different kinds of backgrounds while in the hospital. Some have sad stories and others are trying to remain upbeat. I find talking to other patients helps both me and them. My goal is to try and have a brief conversation with as many patients as possible during my hospital stay. I figure if I start a simple friendly conversation that I could maybe add a little pleasantness into other people’s day. I think overall that I am doing a good job in raising the spirits of those on the floor. Sure there are some very sad situations on the cancer ward. For these cases I offer my prayers to their friends and family. Speaking of prayer I do have a Eucharistic Minister or a Priest visit me each day with Communion. This lifts my spirits significantly.
Did anyone get to see the “Stand Up to Cancer” telethon? This should show you how many people are fighting for cures that are not all that far away. If you think about some of the statistics 1 out of every 2 men and 1 out of every 3 women will be touched by cancer in their lifetime. The good news is that they collected $100 million dollars in donations. It was a great friend (and Goombah) who told my wife and me that God did not give cancer to me but it will be God who will heal me. As I think about that I believe that it is very possible that some of God’s healing powers exists within some of these great doctors I am lucky to have treating me. We always hear how God needs us to be his hands and feet. While in the hospital I have seen medical professionals (volunteers to doctors) taking up the role of compassionate healers. Below are the words to a song that make me think of what Jesus asks of us.
Hands and Feet
An image flashed across my TV screen
Another broken heart comes into view
I saw the pain, and I turned my back
Why can't I do the things I want to?
I am willing yet I'm so afraid
You give me strength
When I say
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
I've abandoned every selfish thought
I've surrender everything I've got
You can have everything I am
And perfect everything I'm not
I am willing, I'm not afraid
You give me strength
When I say...
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
This is the last time
I turn my back on You
From now on I'll go out
Send me where You want me to
I finally have a mission
I promise I'll complete
I don't need excuses
When I am Your hands and feet
I am Your hands and feet
I wanna be Your hands
I wanna be Your feet
I'll go where You send me
I'll go where You send me
I'll be Your hands
I'll be Your feet
I'll go where You send me
I'll go where You send me
And I try, yeah I try
To touch the world like You touched my life
An I'll find my way
To be Your hands
More to come…
http://mantlecell.blogspot.com/
Subscribe to:
Posts (Atom)