Friday, May 10, 2013
1Year + Day 15
Wow!!!!!! I guess I am REALLY behind in updating the blog! Bill just reminded so.............
We are now living in Cleveland! As many times as we have moved this move proved to be the most challenging. May have something to do with age?????We were in a hotel for 3 weeks until we could move into our new "old" house. We made the decision to renovate the kitchen and bath as soon as we moved in knowing it might never get accomplished if we waited. Six weeks later we are getting close to having a functional kitchen and bath.
Bill's new oncologist at the Cleveland Clinic is GREAT! Young, smart and personable. He has a few opinions that differ from his previous oncologist such as next week he is going in to receive ALL his childhood immunization again. But so far the clinic has been wonderful. Bill's blood counts have remained stable which is good news. His IGM level, which is basically the cancer marker has slowly increased over the past couple of months. Although abnormal still not high enough to begin treatments again. We are hoping and praying we can hold the monster at bay for a long time.
Bill has experienced severe weakness in his right leg making it impossible to walk without a cane. MRI showed several herniated discs so initial thought was it would improve with time. Unfortunately after 4 weeks he is still unable to walk without assistance. This makes climbing stairs very scary and this house has several sets of stairs.The spine specialist does not think this is the cause for his weakness. Today he had an EMG and nerve conduction test indicating back problems and neuropathy. So Monday we see the neurologist and hopefully she can put this all together and find some type of treatment to help. It may be nerve damage from the cancer and chemo or disc issues or a combination of both but we need to figure out how we can get him mobile again.
Thanks for still being Bill's cheerleader! We are so grateful for your continued prayers!
Saturday, February 9, 2013
Day + 295
It is so hard to believe that just one year ago preparations were taking place for Bill's transplant. In many ways it seems like a life time ago and in others ways like yesterday! I was just reminded from my friend, Betty, it was time for a blog update!
Our visit to the oncologist yesterday was encouraging. Although Bill's hemoglobin and platelets dropped a bit, his IGM level (an indication of how much cancer is present) only went up a fraction. The goal remains to try and keep this monster at bay as long as possible before needing further treatment. So for the time being we are still going to wait and see. On February 25th Bill will see his transplant doctor at Northwestern and at that time explore all future options.
As Bill's transplant journey continues our journey in life continues to evolve. We have sold our home in Geneva and are moving forward with our plan of moving to Cleveland that we first began talking about several years ago. After several exhausting trips to find a house we have finally verbally agreed with the seller on one in University Heights. This was the 3rd home we put in an offer on. Now just waiting for all parties to sign the contract. Please say a little prayer all will go smoothly and we will not be homeless on March 7th when our home here closes.
Moving to Cleveland will allow Bill to continue to work, if he chooses, or allow him to retire. I have been extremely fortunate to have received 2 job offers that I had to decline until I can get us physically moved TOGETHER! Please say a little prayer that another opportunity will present itself after the moved is accomplished. Health insurance is the motivating factor.
We are now in the process of working with his doctors here to become established with a doctor at the Cleveland Clinic. It will be difficult leaving the security of his doctors and nurses here whom we have developed such a strong relationshipwith and confidence in. We also know that the Cleveland Clinic has an outstanding reputation and we are confident they will continue to see us through this journey.
On another note some updates on our transplant friends:
Aimee moved to California to be closer to family. Her recent biopsy showed NO CANCER! She continues to make me smile every time we text. I love this modern technology!
Scott has struggled a bit with his numbers but his recent biopsy showed NO CANCER! He continues to get stronger and back to work!
Don is traveling from Hawaii to Texas enjoying retirement with his wife Sue and continues to be in REMISSION!
Friends and Family are gifts in life that sometimes we take for granted but are the true Blessings we have in our lives. Whether it is a friendly reminder to update the blog, the phone call to see how things are going or the millions of prayers they send our way we continue to be so Blessed and are so very VERY grateful to each and every one of you!
Our visit to the oncologist yesterday was encouraging. Although Bill's hemoglobin and platelets dropped a bit, his IGM level (an indication of how much cancer is present) only went up a fraction. The goal remains to try and keep this monster at bay as long as possible before needing further treatment. So for the time being we are still going to wait and see. On February 25th Bill will see his transplant doctor at Northwestern and at that time explore all future options.
As Bill's transplant journey continues our journey in life continues to evolve. We have sold our home in Geneva and are moving forward with our plan of moving to Cleveland that we first began talking about several years ago. After several exhausting trips to find a house we have finally verbally agreed with the seller on one in University Heights. This was the 3rd home we put in an offer on. Now just waiting for all parties to sign the contract. Please say a little prayer all will go smoothly and we will not be homeless on March 7th when our home here closes.
Moving to Cleveland will allow Bill to continue to work, if he chooses, or allow him to retire. I have been extremely fortunate to have received 2 job offers that I had to decline until I can get us physically moved TOGETHER! Please say a little prayer that another opportunity will present itself after the moved is accomplished. Health insurance is the motivating factor.
We are now in the process of working with his doctors here to become established with a doctor at the Cleveland Clinic. It will be difficult leaving the security of his doctors and nurses here whom we have developed such a strong relationshipwith and confidence in. We also know that the Cleveland Clinic has an outstanding reputation and we are confident they will continue to see us through this journey.
On another note some updates on our transplant friends:
Aimee moved to California to be closer to family. Her recent biopsy showed NO CANCER! She continues to make me smile every time we text. I love this modern technology!
Scott has struggled a bit with his numbers but his recent biopsy showed NO CANCER! He continues to get stronger and back to work!
Don is traveling from Hawaii to Texas enjoying retirement with his wife Sue and continues to be in REMISSION!
Friends and Family are gifts in life that sometimes we take for granted but are the true Blessings we have in our lives. Whether it is a friendly reminder to update the blog, the phone call to see how things are going or the millions of prayers they send our way we continue to be so Blessed and are so very VERY grateful to each and every one of you!
Wednesday, December 12, 2012
Day +231
Home again!
Bill is home again. The pneumonia that got into his blood system is under control. They were able to identify the exact type of bacteria and give him exact antibiotic to kill it. He began to develop a rash on his hands that we were worried it would develop into that horrific full body rash he had after transplant but luckily they were able to discontinue the drug that did it and rash is gone.
So he is home........feeling almost great and sitting at his desk working.........
So we are praying these viruses that he and I keep getting will stay away......and this crazy cycle will stop!!!!!!
On another happy note...... my trip to Europe to travel with Molly obviously was cancelled but she will be home in 2 days and spend Christmas with her Dad........ God's plan REALLY is better than our plans.
MERRY CHRISTMAS!!!!!
Bill is home again. The pneumonia that got into his blood system is under control. They were able to identify the exact type of bacteria and give him exact antibiotic to kill it. He began to develop a rash on his hands that we were worried it would develop into that horrific full body rash he had after transplant but luckily they were able to discontinue the drug that did it and rash is gone.
So he is home........feeling almost great and sitting at his desk working.........
So we are praying these viruses that he and I keep getting will stay away......and this crazy cycle will stop!!!!!!
On another happy note...... my trip to Europe to travel with Molly obviously was cancelled but she will be home in 2 days and spend Christmas with her Dad........ God's plan REALLY is better than our plans.
MERRY CHRISTMAS!!!!!
Sunday, December 9, 2012
Day +228
Things change on a dime!
So Friday Afternoon Bills' counts were Perfect! By 11:00 Saturday morning he had a temp of 104.8 and escalated white blood count. After a trip to Urgent care followed by ER he was admitted to hospital to receive IV antibiotics. They are testing for flu but we are pretty sure it was the onset of pneumonia.
Today, Sunday. His temp is normal, his heart rate is normal, his blood pressure is normal, white count went up so they did a repeat chest xray. Waiting for his oncologist to make rounds but looks like at least another night here! I had ALMOST forgotten what hospital life was like!
So Friday Afternoon Bills' counts were Perfect! By 11:00 Saturday morning he had a temp of 104.8 and escalated white blood count. After a trip to Urgent care followed by ER he was admitted to hospital to receive IV antibiotics. They are testing for flu but we are pretty sure it was the onset of pneumonia.
Today, Sunday. His temp is normal, his heart rate is normal, his blood pressure is normal, white count went up so they did a repeat chest xray. Waiting for his oncologist to make rounds but looks like at least another night here! I had ALMOST forgotten what hospital life was like!
Friday, December 7, 2012
Day +226
Long Anticipated Blood test.........
Although it has only been a few weeks, it seems like forever since I have posted. Today Bill will be going in for his first blood test in 6 weeks. We will immediately know what his red, white and platelet counts are but will not know his IGM level for a few days. If his counts today are as good as or better than his last check that will give us an indication things are holding well. The IGM is the level of antibodies fighting the cancer. We hope that number continues to be low indicating there is not much cancer to fight! Will let you know later today...... in the meantime Bill and I have been trading respiratory infections for the past couple of weeks. He has been working and even traveling a bit through it all. He never ceases to amaze me his resolve to keep going. He REALLY is an AMAZING man and I am so blessed to be married to! more to follow...
GREAT NEWS!!!!!!!!!!!!
All blood counts were Excellent! Molly said it so well "Best Christmas Gift ever"!!!
Monday, October 22, 2012
Day +180
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!
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!
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!
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!
Monday, July 2, 2012
Day + 69 A Day to Celebrate
A Day to Celebrate.
We received the results of Bill's biopsy. His cancer is now detected in less than 5 % of his bone marrow!!!!!!!!!
YAY!!!!!!!!!!!
When this Journey began is bone marrow was 90 % cancer. The intensive chemo knocked out a huge portion of it and the transplant took care of almost all of it. So YES he is now considered in REMISSION!
He now begins the maintenance part of the journey to keep him in this state of remission for a long LONG time.
Thank you Thank you Thank you for all the positive vibes and prayers!!!!
I have felt such a strong connection as a result of keeping this blog. You reading it has and continues to give us all strength in so many many ways. I plan on continuing to post updates but PLEASE bear with me as they may be simply what we had for dinner!
We received the results of Bill's biopsy. His cancer is now detected in less than 5 % of his bone marrow!!!!!!!!!
YAY!!!!!!!!!!!
When this Journey began is bone marrow was 90 % cancer. The intensive chemo knocked out a huge portion of it and the transplant took care of almost all of it. So YES he is now considered in REMISSION!
He now begins the maintenance part of the journey to keep him in this state of remission for a long LONG time.
Thank you Thank you Thank you for all the positive vibes and prayers!!!!
I have felt such a strong connection as a result of keeping this blog. You reading it has and continues to give us all strength in so many many ways. I plan on continuing to post updates but PLEASE bear with me as they may be simply what we had for dinner!
Saturday, June 30, 2012
Day +67
LESS AND MORE...........
LESS
napping
tiredness
bruising
fear of being around too many people
MORE
getting out
energy
walking
hair
hope
thankfulness
As this journey continues we realize it is just part of the bigger picture! Life brings us all many ups and downs but it is how we face them that can make a difference. So Much easier to handle the ups but because of all the LOVE, SUPPORT and PRAYERS the difficulties of this past year have brought us many blessings, that have made everything so much easier.
Monday we will be getting the results of Bill's bone marrow biopsy. This will tell us exactly how well the transplant worked. We hope and pray to hear the word REMISSION! Regardless of the results it will put this part of the journey behind us so we can move forward and continue to plan for the future.
Thank you for all the continued prayers. It means so very very much.
LESS
napping
tiredness
bruising
fear of being around too many people
MORE
getting out
energy
walking
hair
hope
thankfulness
As this journey continues we realize it is just part of the bigger picture! Life brings us all many ups and downs but it is how we face them that can make a difference. So Much easier to handle the ups but because of all the LOVE, SUPPORT and PRAYERS the difficulties of this past year have brought us many blessings, that have made everything so much easier.
Monday we will be getting the results of Bill's bone marrow biopsy. This will tell us exactly how well the transplant worked. We hope and pray to hear the word REMISSION! Regardless of the results it will put this part of the journey behind us so we can move forward and continue to plan for the future.
Thank you for all the continued prayers. It means so very very much.
Friday, June 22, 2012
Day +59
Biopsy yesterday went well! This was the first one at Northwestern and Bill was very happy!!!!! Not only did he have his usual anti-anxiety drugs but they gave him some iv pain meds. When he was all finished he was a BIT woosie!!!! We let him sleep some of it off before I tried getting him to the car! Jenny received an A+ for her excellent care of Bill. They also have a lab technician there who makes the slides right on the spot as well as an additional nurse practitioner for an extra set of hands. We are so very very blessed in having Northwestern for his care.
Now................ we wait until week after next for the results!
Tonight Bill and I are participating in a RELAY FOR LIFE event! Molly was the Fundraising chairman at her University, Xavier, for their event this past spring and is now volunteering at various other RELAY FOR LIFE events over the summer. She encouraged us so we are going to walk the survivor lap at the opening ceremonies!!!!!!!!!!! Thanks Molly for your commitment in not only fighting for a cancer cure but in your dedication to helping others and making our world a better place!
Now................ we wait until week after next for the results!
Tonight Bill and I are participating in a RELAY FOR LIFE event! Molly was the Fundraising chairman at her University, Xavier, for their event this past spring and is now volunteering at various other RELAY FOR LIFE events over the summer. She encouraged us so we are going to walk the survivor lap at the opening ceremonies!!!!!!!!!!! Thanks Molly for your commitment in not only fighting for a cancer cure but in your dedication to helping others and making our world a better place!
Wednesday, June 20, 2012
Day + 57
Sorry I have not posted in awhile but we don't have too much going on! Bill seems to be getting back to his old self a little more each day!. Tomorrow he goes for his bone marrow biopsy. Not a pleasant procedure so he gets pretty nervous each time. We have drugs to help him through it! Then we wait................. until July 3rd for the results. This biopsy will tell us exactly the extent of the cancer. We are praying for complete remission. It will be a very long week+ so I will try and keep him as busy as his energy permits.
We have had only 1 showing of our house. Not a big surprise and the feedback is exactly what we already knew......over priced and no basement! We are loosing a ton at this price so not sure how much more we can lower it and I can't dig a basement so........ someone will have to come along like us who don't care about basements and love the big windows and backing up to nothing!
Molly is studying like crazy for her MCAT in August as well as busy working and shadowing a pediatrician this summer......busy busy girl!
I have decided I have no more excuses for not exercising so I am trying....... we will see how long I can keep up with it.
Thank you for keeping us all in your prayers. It truly keeps us going knowing how many people are supporting us emotionally and spiritually.
Kay
We have had only 1 showing of our house. Not a big surprise and the feedback is exactly what we already knew......over priced and no basement! We are loosing a ton at this price so not sure how much more we can lower it and I can't dig a basement so........ someone will have to come along like us who don't care about basements and love the big windows and backing up to nothing!
Molly is studying like crazy for her MCAT in August as well as busy working and shadowing a pediatrician this summer......busy busy girl!
I have decided I have no more excuses for not exercising so I am trying....... we will see how long I can keep up with it.
Thank you for keeping us all in your prayers. It truly keeps us going knowing how many people are supporting us emotionally and spiritually.
Kay
Monday, June 11, 2012
Day + 48
Out in the Public.............
Bill went to church yesterday for the first time in many weeks!!!! It was indeed a very special day as after mass they had an adoration procession for the feast of Corpus Christi. One of the many blessings we discovered shortly after his diagnosis was the adoration chapel at our parish. It was something we knew existed but like so many things we took it for granted and never took the time to visit. It became a frequent stop for us either before or after doctor visits and provided both of us with great peace.
He had his blood draw today and platelets and white cells are still on the rise!!! Red counts are proving to be VERY stubborn but holding steady!
On the way home we picked up his bike at the bike shop after having it tuned up! New chain, new brakes, plenty of air in the tires and clean of cob webs so he is all set! It made me VERY nervous to see him ride it home the 2 blocks.........he made it all the way to the bottom of our hill. That took some walking to get it home but he made it home safe and sound and seems to be really looking forward to his evening rides with Molly! Over the past many years during the summer they would ride to the candy store every night on their bikes! Since our local candy store is now closed I am hoping for a healthier destination and know he will be in good hands with Molly by his side!
Bill went to church yesterday for the first time in many weeks!!!! It was indeed a very special day as after mass they had an adoration procession for the feast of Corpus Christi. One of the many blessings we discovered shortly after his diagnosis was the adoration chapel at our parish. It was something we knew existed but like so many things we took it for granted and never took the time to visit. It became a frequent stop for us either before or after doctor visits and provided both of us with great peace.
He had his blood draw today and platelets and white cells are still on the rise!!! Red counts are proving to be VERY stubborn but holding steady!
On the way home we picked up his bike at the bike shop after having it tuned up! New chain, new brakes, plenty of air in the tires and clean of cob webs so he is all set! It made me VERY nervous to see him ride it home the 2 blocks.........he made it all the way to the bottom of our hill. That took some walking to get it home but he made it home safe and sound and seems to be really looking forward to his evening rides with Molly! Over the past many years during the summer they would ride to the candy store every night on their bikes! Since our local candy store is now closed I am hoping for a healthier destination and know he will be in good hands with Molly by his side!
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