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.................
Friday, August 31, 2012
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!
Thursday, August 9, 2012
Day +106
Well............. we are now well over the 100 day mark.
Bill had his 1st round of maintenance Rituxan Chemo last week and all went smoothly. He also has been taking an oral chemo which hasn't gone quite as well.
He has been getting hives the day after he takes it and it appears to be making him very tired. So we may be rethinking this program but we will see what his doctor says.
Our very dear friends from California did a Route 66 road trip and came and spent a few days with us. We laughed and laughed and laughed some more. One of the greatest blessings in life TRUE FRIENDS! Safe journey home, Picco, Carol and Matt!!!!!
Bill is still planning on trying to return to work next week.
I am still looking for work
Molly is studying non stop for her MCAT next Thursday!
Update on our friend Aimee: Biopsy results show Leukemia free!!!!!!!!!!!!!!!!!!!!!!!!!!! and her bone marrow is now more than 98% donor which is as good as it gets!!!!! Thank you God!
Bill had his 1st round of maintenance Rituxan Chemo last week and all went smoothly. He also has been taking an oral chemo which hasn't gone quite as well.
He has been getting hives the day after he takes it and it appears to be making him very tired. So we may be rethinking this program but we will see what his doctor says.
Our very dear friends from California did a Route 66 road trip and came and spent a few days with us. We laughed and laughed and laughed some more. One of the greatest blessings in life TRUE FRIENDS! Safe journey home, Picco, Carol and Matt!!!!!
Bill is still planning on trying to return to work next week.
I am still looking for work
Molly is studying non stop for her MCAT next Thursday!
Update on our friend Aimee: Biopsy results show Leukemia free!!!!!!!!!!!!!!!!!!!!!!!!!!! and her bone marrow is now more than 98% donor which is as good as it gets!!!!! Thank you God!
Friday, July 27, 2012
Day +94
Bill is still doing GREAT!
Hair is growing back and needs to shave! Taking a little rest on the couch (probably watching a game show or 2)
He and I went to a small par 3 golf course Wednesday to see how he would do! It was not a smart day to go out given that the heat index was so high! But non the less we took out a cart, I drove and he play about 10 holes.
Thursday he went out on his own and played the short course again this time 18 holes, of course, with a cart! His goal is to play 18 on a more challenging course without the cart! I know he will attain his goal, may be not this season but in many to come!
Monday he will get his first round of the targeted drug Rituxan and hopefully the insurance has approved his oral drug. These together will keep the monster at bay!
He has decided to make some fleece blankets to take to the Chemo Center. He always took one that Molly made him because he always got so cold. It was very fun to see him working with fabric and it turned out great!
He is still planning on returning to work on August 13th. His first trip out, to Atlanta, at the end of the month I will go along.
Update on other issues:
Our newest friends we met at Northwestern:
Scott is home in Wisconsin, just celebrated his 50th Birthday, Leukemia free and doing great!
Don is also doing great! He, like Bill, received his own stem cells and his test results are showing he is in complete remission! We met him and his wife, Sue, for Coffee last week to catch up and compare notes!
Aimee is home in Chicago. We met her at the clinic last week for a real hug and to catch up in person! She was struggling with severe fatigue but they adjusted some of her meds and she is doing much MUCH better! She had her Biopsy this week so we are anxiously awaiting some good news!
House still on the market with not much activity! We have lowered the price as much as possible and St. Joseph is buried! Not much else we can do!
Molly is studying 6-8 hours per day getting ready for the MCAT on August 16th. Please keep her in your prayers! Her nails are getting shorter and shorter!
I am still looking for employment, enjoying being home with Bill and Molly and trying to loose a few pounds!
Our very dear friends from California are setting out tomorrow driving Route 66 to see us!!!! Can't wait!!!!!!!
We continue to be so so BLESSED!
Thanks for keeping up with this crazy Journey and please know that ALL of you remain in our prayers!
Hair is growing back and needs to shave! Taking a little rest on the couch (probably watching a game show or 2)
He and I went to a small par 3 golf course Wednesday to see how he would do! It was not a smart day to go out given that the heat index was so high! But non the less we took out a cart, I drove and he play about 10 holes.
Thursday he went out on his own and played the short course again this time 18 holes, of course, with a cart! His goal is to play 18 on a more challenging course without the cart! I know he will attain his goal, may be not this season but in many to come!
Monday he will get his first round of the targeted drug Rituxan and hopefully the insurance has approved his oral drug. These together will keep the monster at bay!
He has decided to make some fleece blankets to take to the Chemo Center. He always took one that Molly made him because he always got so cold. It was very fun to see him working with fabric and it turned out great!
He is still planning on returning to work on August 13th. His first trip out, to Atlanta, at the end of the month I will go along.
Update on other issues:
Our newest friends we met at Northwestern:
Scott is home in Wisconsin, just celebrated his 50th Birthday, Leukemia free and doing great!
Don is also doing great! He, like Bill, received his own stem cells and his test results are showing he is in complete remission! We met him and his wife, Sue, for Coffee last week to catch up and compare notes!
Aimee is home in Chicago. We met her at the clinic last week for a real hug and to catch up in person! She was struggling with severe fatigue but they adjusted some of her meds and she is doing much MUCH better! She had her Biopsy this week so we are anxiously awaiting some good news!
House still on the market with not much activity! We have lowered the price as much as possible and St. Joseph is buried! Not much else we can do!
Molly is studying 6-8 hours per day getting ready for the MCAT on August 16th. Please keep her in your prayers! Her nails are getting shorter and shorter!
I am still looking for employment, enjoying being home with Bill and Molly and trying to loose a few pounds!
Our very dear friends from California are setting out tomorrow driving Route 66 to see us!!!! Can't wait!!!!!!!
We continue to be so so BLESSED!
Thanks for keeping up with this crazy Journey and please know that ALL of you remain in our prayers!
Friday, July 20, 2012
Day +87
Progress.................Progress......................Progress!!!!!!!!!!!!
Each day Bill gets a little bit stronger, a little less tired and a little more like his old self!
Yesterday Molly and I took him out to the driving range and we all shared a bucket of balls! He did Great, Molly did Amazing and well........ we won't talk about my results! haha It finally cooled off a bit so it was a very nice time!
Today we made the full circle back to Bill's original oncologist! He will be handling his after transplant followup! We are waiting for the insurance company to approve a new oral drug that will continue to target the little bit of cancer still left in his bone marrow. Since his type of cancer is very VERY rare there are very few drug protocols for Waldenstrom. This drug is extremely expensive because it is still considered new on the market and currently used for a similar cancer to his so our doctor may have to convince them. We are not concerned as the insurance so far has been fabulous!
So the plan is:
Oral drug Revlimid 3 times per week
Infusion of Rituxan 1 time per month (takes about 4-5 hours)
He will do this for the next six months. At that point his two doctors will evaluate and then we see where we go from there!!!.
Bill is planning to return to work on August 13th. We are still trying to sell the house and planning to move more toward retirement at least for him, Insurance right now is what is dictating some of our decisions.
Each day it seems more and more things continue to move in the right direction and we are so thankful for God's continued blessings!
Each day Bill gets a little bit stronger, a little less tired and a little more like his old self!
Yesterday Molly and I took him out to the driving range and we all shared a bucket of balls! He did Great, Molly did Amazing and well........ we won't talk about my results! haha It finally cooled off a bit so it was a very nice time!
Today we made the full circle back to Bill's original oncologist! He will be handling his after transplant followup! We are waiting for the insurance company to approve a new oral drug that will continue to target the little bit of cancer still left in his bone marrow. Since his type of cancer is very VERY rare there are very few drug protocols for Waldenstrom. This drug is extremely expensive because it is still considered new on the market and currently used for a similar cancer to his so our doctor may have to convince them. We are not concerned as the insurance so far has been fabulous!
So the plan is:
Oral drug Revlimid 3 times per week
Infusion of Rituxan 1 time per month (takes about 4-5 hours)
He will do this for the next six months. At that point his two doctors will evaluate and then we see where we go from there!!!.
Bill is planning to return to work on August 13th. We are still trying to sell the house and planning to move more toward retirement at least for him, Insurance right now is what is dictating some of our decisions.
Each day it seems more and more things continue to move in the right direction and we are so thankful for God's continued blessings!
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