Well........it looks like this may be my last post for awhile.....
We met today with Bill's transplant doctor to develop a new game plan. In light of his extreme reactions to the latest drugs he was on and his numbers looking so good the new plan is to do NOTHING. We concluded the treatments were causing too many issues for being the icing on the cake after transplant we were hoping for. Bill is thrilled to be drug free for the time being. He will continue to have his blood checked every 6 weeks and if his numbers don't cooperate then we will revisit treatment options with his doctors.
Thank you, thank you, thank you for the many prayers that continue to come our way. Although this journey is in a bit of a recess, Bill and I are ever so grateful for all the love and support we receive from each of you. As Thanksgiving is just around the corner, please know how truly blessed and thankful we are to have each of you along with us on Bill's Journey. We NEVER could have made it through this past year without you!
Monday, October 22, 2012
Friday, September 28, 2012
Day + 156
Chemo Day......................
9:00 am
Today we met with Bill's doctor to try and map out the new maintenance game plan! We should have a decision today with what to give him in replacement of the oral drug that wiped out not only his immune system but him as well! The GREAT news is his blood test on Monday showed his IGM level NORMAL. This is the antibody that fights the cancer so it tells us things continue to move in the right direction and his body no longer is making an abundance of antibodies. In the meantime he will receive today his Rituxan infusion! He didn't get much sleep last night having anxiety about a repeat of the last episode. And I must admit I didn't either.
10:00 am
So they began today with giving him double the Tylenol, a massive dose if IV Benadryl and a mega dose of a new steroid. Hopefully all of this will convince his body not to reject the chemo! Five minutes into it he couldn't stay awake with all of the benedryl. So we are now waiting for this all to fully kick in before starting the chemo! His chemo nurses are so amazing! They are constantly joking with him while reassuring him everything will be fine, both putting him somewhat at ease. I know I have said this many times before but..............I can't say enough about his chemo nurses. They truly make this journey tolerable!
10:45 am
Ok........... Rituxan has begun at a VERY slow rate. Now we wait and see how his body wants to respond. I have been so fortunate to be able to be with him each and every time he has had chemo. I now know, more than ever, chemo is never routine so keeping a watchful eye is crucial. It always brought me a bit of sadness when I would see a patient going through chemo alone but now I know it is not only important for the patient to not feel that they are in this alone but having someone immediately accessible is equally important.
11:00 am
So far so good.................... I will keep you posted
11:15 am
Blood pressure still good so speeding up the infusion a small bit!
11:22 am
Reaction started......blood pressure this time went sky high as he turned completely red. Team once again jumped into action and took over.
11:31 am
Blood pressure coming down a bit with the help of more drugs and oxygen.
This is definitely the end of Rituxan for Bill.
11:40 am
Blood pressure back to normal, coloring back to normal, state of mind..............still has a way to go!
So back to square one on devising a maintenance plan. Dr. Mehta assured us there are options so we will meet with him again in a couple of weeks to discuss.
I now look back when this journey first began when I asked............ "what is the plan?"
The answer to me was....."today this is the plan but tomorrow it may change." With cancer the plan is always evolving. Every one's cancer is different, everyone reacts differently to drugs, and every one's response to chemo is different. So I now REALLY understand why it is important to be flexible!
So please, keep those prayers coming for Bill and all the millions of people battling this strange disease. Please add to your prayer list pharmaceutical companies that they continue research on this rare cancer and they continue to come up with new drug options. I use to not think very highly of drug companies as I thought they just wanted to make money but now I pray for their success in moving forward.
Kay
9:00 am
Today we met with Bill's doctor to try and map out the new maintenance game plan! We should have a decision today with what to give him in replacement of the oral drug that wiped out not only his immune system but him as well! The GREAT news is his blood test on Monday showed his IGM level NORMAL. This is the antibody that fights the cancer so it tells us things continue to move in the right direction and his body no longer is making an abundance of antibodies. In the meantime he will receive today his Rituxan infusion! He didn't get much sleep last night having anxiety about a repeat of the last episode. And I must admit I didn't either.
10:00 am
So they began today with giving him double the Tylenol, a massive dose if IV Benadryl and a mega dose of a new steroid. Hopefully all of this will convince his body not to reject the chemo! Five minutes into it he couldn't stay awake with all of the benedryl. So we are now waiting for this all to fully kick in before starting the chemo! His chemo nurses are so amazing! They are constantly joking with him while reassuring him everything will be fine, both putting him somewhat at ease. I know I have said this many times before but..............I can't say enough about his chemo nurses. They truly make this journey tolerable!
10:45 am
Ok........... Rituxan has begun at a VERY slow rate. Now we wait and see how his body wants to respond. I have been so fortunate to be able to be with him each and every time he has had chemo. I now know, more than ever, chemo is never routine so keeping a watchful eye is crucial. It always brought me a bit of sadness when I would see a patient going through chemo alone but now I know it is not only important for the patient to not feel that they are in this alone but having someone immediately accessible is equally important.
11:00 am
So far so good.................... I will keep you posted
11:15 am
Blood pressure still good so speeding up the infusion a small bit!
11:22 am
Reaction started......blood pressure this time went sky high as he turned completely red. Team once again jumped into action and took over.
11:31 am
Blood pressure coming down a bit with the help of more drugs and oxygen.
This is definitely the end of Rituxan for Bill.
11:40 am
Blood pressure back to normal, coloring back to normal, state of mind..............still has a way to go!
So back to square one on devising a maintenance plan. Dr. Mehta assured us there are options so we will meet with him again in a couple of weeks to discuss.
I now look back when this journey first began when I asked............ "what is the plan?"
The answer to me was....."today this is the plan but tomorrow it may change." With cancer the plan is always evolving. Every one's cancer is different, everyone reacts differently to drugs, and every one's response to chemo is different. So I now REALLY understand why it is important to be flexible!
So please, keep those prayers coming for Bill and all the millions of people battling this strange disease. Please add to your prayer list pharmaceutical companies that they continue research on this rare cancer and they continue to come up with new drug options. I use to not think very highly of drug companies as I thought they just wanted to make money but now I pray for their success in moving forward.
Kay
Wednesday, September 12, 2012
Day +140
No news to really report except that Bill is feeling GREAT! It would be absolutely wonderful if he could remain off any kind of drug but unfortunately the monster would continue to take over! Friday he will go in for blood tests and maybe the doctors have come up with a new maintenance plan! We will see......... but in the meantime Bill is enjoying having energy and feeling good! His hair is all back but he likes his new short look so much I took out the trimmer yesterday and buzzed it good! Will post again after Friday!
Friday, August 31, 2012
Day +128
Two steps Forward 3 Steps Backwards.......................
Today Bill had his blood counts checked and all looked pretty good. We then met with his Doctor to discuss what to do about his adverse reaction to the oral drug he was on. No final conclusion as he wants to discuss it further with his transplant Doctor but for now he has discontinued using it. Next we went to the back so he could get is chemo infusion. He has received this drug 13 times with absolutely no adverse effects during infusion but not today....................... Less than 30 minutes into it he looked at me and said he was dizzy. The look on his face told me something was not right. I can not say enough about his chemo nurses Ted and Shelly. They stepped into high gear and immediately took action. Bottom line his blood pressure and heart rate took a nose dive. That was the end of chemo for today. I have learned that each person responds differently to the same drug but I now know that each person can respond differently to the same drug each time they take it! The human body is amazing and such a mystery at times. We had hoped by now things would become just a boring routine but it is looking like the new routine will forever be new challenges presenting themselves. We are so very fortunate to be in the hands of extremely wonderful medical professionals!
The Journey continues.................
Today Bill had his blood counts checked and all looked pretty good. We then met with his Doctor to discuss what to do about his adverse reaction to the oral drug he was on. No final conclusion as he wants to discuss it further with his transplant Doctor but for now he has discontinued using it. Next we went to the back so he could get is chemo infusion. He has received this drug 13 times with absolutely no adverse effects during infusion but not today....................... Less than 30 minutes into it he looked at me and said he was dizzy. The look on his face told me something was not right. I can not say enough about his chemo nurses Ted and Shelly. They stepped into high gear and immediately took action. Bottom line his blood pressure and heart rate took a nose dive. That was the end of chemo for today. I have learned that each person responds differently to the same drug but I now know that each person can respond differently to the same drug each time they take it! The human body is amazing and such a mystery at times. We had hoped by now things would become just a boring routine but it is looking like the new routine will forever be new challenges presenting themselves. We are so very fortunate to be in the hands of extremely wonderful medical professionals!
The Journey continues.................
Monday, August 27, 2012
Day +124
Back to Normal..............
After being off the new chemo drug for 1 week Bill's blood counts are ALL back in the normal range. This is the very first time his Red, White and Platelets are all normal together at the same time!
Friday he will have his Rituxan chemo infusion which lasts after 4 hours. We will also meet with his oncologist and work out a game plan for this other drug that did his immune system in. Bill talked with him briefly about possibly lowering the dosage but he was going to conference with his transplant doctor and get his opinion. It is always reassuring that we have 2 oncologists working together. They always say "two heads are better than one".
Bill has been working from home and leary about making travel plans just yet! We will see what Friday brings.
Molly leaves tomorrow to study in Italy for 4 months. It will definately be a bitter sweet day! We are so excited for her to experience the Italian culture she so dearly loves but we will sure miss seeing that smiling face and be sad she is so far away! She is ready and very capable so I will just leave the rest in God's hands!
Will update again once I know our new drug plan!
After being off the new chemo drug for 1 week Bill's blood counts are ALL back in the normal range. This is the very first time his Red, White and Platelets are all normal together at the same time!
Friday he will have his Rituxan chemo infusion which lasts after 4 hours. We will also meet with his oncologist and work out a game plan for this other drug that did his immune system in. Bill talked with him briefly about possibly lowering the dosage but he was going to conference with his transplant doctor and get his opinion. It is always reassuring that we have 2 oncologists working together. They always say "two heads are better than one".
Bill has been working from home and leary about making travel plans just yet! We will see what Friday brings.
Molly leaves tomorrow to study in Italy for 4 months. It will definately be a bitter sweet day! We are so excited for her to experience the Italian culture she so dearly loves but we will sure miss seeing that smiling face and be sad she is so far away! She is ready and very capable so I will just leave the rest in God's hands!
Will update again once I know our new drug plan!
Monday, August 20, 2012
Day +117
Minor Set Back.................
Bill is extremely disappointed today. (he would tell you just pissed off)
Last week, his first week back to work, after feeling great for 3 weeks ended up getting some type of flu. He spent his first week back to work trying to work while fighting off 4 days of fever, aching and night sweats. We at first thought it was a reaction to his chemo drug but now think it was the flu.
This week was to be his first trip out of town. We went this morning to get his blood counts today and he is neutropenic. That means not only are his white cells so low that his baby white cells are almost too low to count! This all means that if he gets around a germ he can't fight it so............ no air travel or large crowds............he had to call his boss with the news! I know he is VERY worried about jobs and insurance etc. but I also know the dear Lord has a plan we just need to figure it out so we can follow it!
The good news in all of this is that his counts are low because of a drug and not because of the disease. We will put together plan B of a maintenance program and will keep you all posted of this ever changing JOURNEY. I just looked up the definition of "journey". It is the process of development and gradual passing from place to place.
Well I can sure say it is a Process...................
Thank you as always for keeping us in your prayers. I am ever reminded that Bill is a person of great faith and we have all of you praying for him!
Bill is extremely disappointed today. (he would tell you just pissed off)
Last week, his first week back to work, after feeling great for 3 weeks ended up getting some type of flu. He spent his first week back to work trying to work while fighting off 4 days of fever, aching and night sweats. We at first thought it was a reaction to his chemo drug but now think it was the flu.
This week was to be his first trip out of town. We went this morning to get his blood counts today and he is neutropenic. That means not only are his white cells so low that his baby white cells are almost too low to count! This all means that if he gets around a germ he can't fight it so............ no air travel or large crowds............he had to call his boss with the news! I know he is VERY worried about jobs and insurance etc. but I also know the dear Lord has a plan we just need to figure it out so we can follow it!
The good news in all of this is that his counts are low because of a drug and not because of the disease. We will put together plan B of a maintenance program and will keep you all posted of this ever changing JOURNEY. I just looked up the definition of "journey". It is the process of development and gradual passing from place to place.
Well I can sure say it is a Process...................
Thank you as always for keeping us in your prayers. I am ever reminded that Bill is a person of great faith and we have all of you praying for him!
Monday, August 13, 2012
Day +110
NORMAL......
Bill's Red Blood Count was normal today for the very first time!!!!! Today he hit a milestone with this news! White count was also normal today! Platelets have gone down but that was expected with the oral chemo drug he is now on!
The bad news is he is running a low grade fever and feels crappy. He has been so fortunate to have escaped any bugs this past year until now. We are hoping it is just something that will pass quickly.
Today was also his first day back to work! A difficult task after being off for over 4 months and not feeling great! It is wonderful that his office is at home so until be begins traveling again he can get back into it slowly!
Thank you again so very much for the continued prayers, phone calls and good wishes. It means more than I could ever express!
Bill's Red Blood Count was normal today for the very first time!!!!! Today he hit a milestone with this news! White count was also normal today! Platelets have gone down but that was expected with the oral chemo drug he is now on!
The bad news is he is running a low grade fever and feels crappy. He has been so fortunate to have escaped any bugs this past year until now. We are hoping it is just something that will pass quickly.
Today was also his first day back to work! A difficult task after being off for over 4 months and not feeling great! It is wonderful that his office is at home so until be begins traveling again he can get back into it slowly!
Thank you again so very much for the continued prayers, phone calls and good wishes. It means more than I could ever express!
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