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
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