We made the last oncologist visit of the year!!!
Bob still has one chemo left---- on new year's eve. He had one today and is hanging in pretty well, not feeling unwell yet.
The chemo has been changed to once every other week. The blood numbers came up very well by not having chemo every week.
There is still no sign of any active myeloma in the marrow. PTL
We have complained about Bob's pain in the hip (actually on the back of the pelvis) so much that I am sure everyone is tired of it!!!!! It still was not under control and he was becoming more sleepy and disorientated. Fortunately, when the oncology nurse came to call him into the appointment-- Bob was sleeping. I think she realized that yes this was not good. How does one have a life?
Bob has been changed to another drug, in patch form, to handle the pain. The patch is to last 72 hours so we will see. He needed to take a break through 5mg morphine this am but otherwise it is all good. He feels better!!!
This can be tweaked a fair bit before it is not effective. Looking way better. Next stop would be the pain clinic.
January 4, 2016 Bob is back to work. Still on the old schedule--some days at the estate and some days in the city. We were getting the hang of being full time together-- and no other work. I will miss Bob but this will be very good for him. We will see how he makes out. Praying he will be able to physically and mentally manage the drive, the full day and the work.
Almost time to close the door on 2015. This has not been our best year, but it has been a great year in terms of stretching our faith and trusting God, so for that we are thankful.
Merry Christmas, enjoy the time with whomever you get to spend Christmas with. The movie Robin Williams was in......can't for the life of me remember the name of it......but the slogan was carpe diem----seize the day. We are trying to seize each day with only the positive of the day and letting the negative just collapse upon itself.
Our wishes, for calmness and much joy for the Season, to each of you.
Friday, December 18, 2015
Saturday, December 5, 2015
DAY 100
Today is day 100, post transplant. This marks the end of the early recovery phase of Bob's care. Not sure how to celebrate this day!!!! In school they have day 100----100 days of school. Each child brings 100 items of something----lots of counting involved (which is the whole point, duh). So I asked Bob what will you bring to 100 day post transplant??? Let's sing this list to the tune of a Partridge in a Pear Tree: 100 blood tests, 100 doctor visits, 100 chemo injections, 100 visits to the drugstore, 100 trips to Tom Baker, 1 million pills swallowed,???? (1 million ! oh Bob!!!! that is 10,000 x 100) and 1 amazing oncologist....................
Bob is doing well. He is tired but kicking the tiredness the best he can. We (shhhh don't tell the nurses) are playing with the morphine and almost have the recipe for pain control. Bob has each measurement of morphine--3mg, 6mg,of hydro morphine then 5mg of regular??morphine. We are keeping track of what allows him to be pain free come the morning and then keeps him free all day. We think we have it!!!!! That will be the biggest accomplishment for now.
Bob has had 3 injections of velcade so far and has one more before we see Dr. Bahlis. There are no steroids along with the velcade so the blood tests Bob takes for diabetes are staying normal. PTL--all below 10 and most below 8. We are so thankful for that. The day after the velcade (today) is a lousy day for Bob --just not feeling well plus a sense of not being able to get his breath. This is only for one day. Thankful for that too. His blood counts are falling though. The major number is for the neutrophils. Should this fall below the magic number he may not be given the velcade. We are thinking that perhaps it would be good to go through the Christmas week without the chemo as it is now scheduled for both Christmas Eve and New Years eve. The "normal" numbers for the neutrophils are between 2.0 and 8.0. Bob started the velcade with a count over 7., last week was 2.5 and this week we are down to 1.9. WBC is now 4.7, HGB is 112, Platelets 88. So we shall see what happens, but Bob may need a break to recover some more.
As life stands today Bob is going to go back to work come January. He is planning for 3 days at the estate and 2 days in the city. He is able to take time needed for blood work, appointments and chemo. We are so thankful to God for Exploron Corp. and how they have cared for Bob. Bob loves his job and is now working for the benefits!!!! !Plus his salary!!!!!
Enjoy this advent season with all the busyness and excitement.
Bob is doing well. He is tired but kicking the tiredness the best he can. We (shhhh don't tell the nurses) are playing with the morphine and almost have the recipe for pain control. Bob has each measurement of morphine--3mg, 6mg,of hydro morphine then 5mg of regular??morphine. We are keeping track of what allows him to be pain free come the morning and then keeps him free all day. We think we have it!!!!! That will be the biggest accomplishment for now.
Bob has had 3 injections of velcade so far and has one more before we see Dr. Bahlis. There are no steroids along with the velcade so the blood tests Bob takes for diabetes are staying normal. PTL--all below 10 and most below 8. We are so thankful for that. The day after the velcade (today) is a lousy day for Bob --just not feeling well plus a sense of not being able to get his breath. This is only for one day. Thankful for that too. His blood counts are falling though. The major number is for the neutrophils. Should this fall below the magic number he may not be given the velcade. We are thinking that perhaps it would be good to go through the Christmas week without the chemo as it is now scheduled for both Christmas Eve and New Years eve. The "normal" numbers for the neutrophils are between 2.0 and 8.0. Bob started the velcade with a count over 7., last week was 2.5 and this week we are down to 1.9. WBC is now 4.7, HGB is 112, Platelets 88. So we shall see what happens, but Bob may need a break to recover some more.
As life stands today Bob is going to go back to work come January. He is planning for 3 days at the estate and 2 days in the city. He is able to take time needed for blood work, appointments and chemo. We are so thankful to God for Exploron Corp. and how they have cared for Bob. Bob loves his job and is now working for the benefits!!!! !Plus his salary!!!!!
Enjoy this advent season with all the busyness and excitement.
Jesus is the reason for the season.
Thursday, November 19, 2015
ONWARD
We were back to seeing Dr. Bahlis and Dr. Neri at their regular clinic, yesterday. Bob was the last patient yesterday so we turned out the lights just before 6:00pm. We hadn't seen Dr. Neri for months so it was great seeing her. They are both so pleased, for Bob, with the results of the transplant.
The last paragraph of the Diagnostic Radiology report for the PET scan is:
Impression
1. No sites of adverse change/disease progression can be identified. No abnormality has appeared at the right hip itself to explain his symptoms.
2. At sites of residual active disease in the right illium and the L 1 spinous process, metabolic activity has further decreased mildly, compatible with a favorable response to interval therapy that appears near-complete in the right illum and partial at L 1.
3. The lesion in the right hemimandible, that was new on the prior study 2015-05-06, has demonstrated a favorable response to therapy that appears to be a complete metabolic response.
4. A complete metabolic response to therapy has been maintained at several other bony sites such as the C3 vertebral body, the left second and fourth ribs, in the T9 region and the left ischium.
This whole report is now our new base line. The cancer has sure been active in Bob's bones, these past years.
Numbers: neutrophils-----4.6, WBC---7.4, RBC--3.4, HGB--111. Kappa/ Lambda free ratio--1.09.
From that we are taking Bob as in remission. Not cancer free but in a good place.
The new plan will begin this Friday the 20th of Nov. Bob is going to receive weekly injections of Velcade, a chemo drug, This is administered under the skin in the belly. When Bob received velcade before it was IV. Still no talk of a steroid (hurrah). Bob needs to go to the hospital for this. We are guessing it must be terribly expensive because patients are not given syringes to administer the velcade at home.
As for the pain, Bob now has a different morphine to try. Keeping the pain controlled is still up and down.
Thankful for the prayers of so many. The ongoing prayer of our hearts is that this remission will last a very long time. Please pray with us.
For this time: "Just the facts ma"am, just the facts". Know who said that?????? hmmm??
The last paragraph of the Diagnostic Radiology report for the PET scan is:
Impression
1. No sites of adverse change/disease progression can be identified. No abnormality has appeared at the right hip itself to explain his symptoms.
2. At sites of residual active disease in the right illium and the L 1 spinous process, metabolic activity has further decreased mildly, compatible with a favorable response to interval therapy that appears near-complete in the right illum and partial at L 1.
3. The lesion in the right hemimandible, that was new on the prior study 2015-05-06, has demonstrated a favorable response to therapy that appears to be a complete metabolic response.
4. A complete metabolic response to therapy has been maintained at several other bony sites such as the C3 vertebral body, the left second and fourth ribs, in the T9 region and the left ischium.
This whole report is now our new base line. The cancer has sure been active in Bob's bones, these past years.
Numbers: neutrophils-----4.6, WBC---7.4, RBC--3.4, HGB--111. Kappa/ Lambda free ratio--1.09.
From that we are taking Bob as in remission. Not cancer free but in a good place.
The new plan will begin this Friday the 20th of Nov. Bob is going to receive weekly injections of Velcade, a chemo drug, This is administered under the skin in the belly. When Bob received velcade before it was IV. Still no talk of a steroid (hurrah). Bob needs to go to the hospital for this. We are guessing it must be terribly expensive because patients are not given syringes to administer the velcade at home.
As for the pain, Bob now has a different morphine to try. Keeping the pain controlled is still up and down.
Thankful for the prayers of so many. The ongoing prayer of our hearts is that this remission will last a very long time. Please pray with us.
For this time: "Just the facts ma"am, just the facts". Know who said that?????? hmmm??
Tuesday, November 3, 2015
GRADUATION
Once a patient is healthy enough, to not need any post- transplant medical needs met, they are considered having graduated!!!!! Today Bob was told he had graduated. HURRAH, HURRAH. I have never seen such a wide, wide smile from Dr. Bahlis :-))) We would have whooped and shouted but not everyone in the BMT clinic was happy today. We saved the whooping until we were out side.
We were told that the two vials of liquid from the bone marrow contained......wait for it.........NO myeloma cells. However, the more solid sample that contained scar tissue had 30% active myeloma. The remission word was used but with the caveat of this spot of myeloma. Tomorrow Bob has a PET scan scheduled (cycletron must be up and working again). The scan will show if that is the only active spot or if there are others. To receive that news we will have an appointment in two weeks.
In two weeks time we go back across the hall to Dr. Bahis' regular clinic where we will have the PET scan results AND Bob will begin another regime of chemo. So pleased Bob graduated but sadly this is the clinic that has long waits. This is also a Wed. clinic. Being on Wed. doesn't really mean to much, as our calendars are able to be very fluid!!!!!LOL
The plan is that Bob may receive radiation on the spot of myeloma. He hasn't had radiation since he was first diagnosed and it was only on his back. Radiation will depend on the PET. Bob will also begin a maintenance dose of velcade and pomalyst. This will be 3 weeks on and 1week off. The velcade is given by intravenous once a week at TBC. The pomalyst is oral. We are so thankful, that for now, Bob will not be on a steroid.
For my medical friends and family: WBC 5.2
RBC 3.3 still a wee bit low
HGB 104 " " "
Platelets 104 " " "'
Kappa free 9.04
Lambda free 11.10
Kappa/Lambda free ratio .81 (this is where we all whooot)
U protein .09
Is that all you need, Donna??????
Soooooo we are pretty pumped. Dr. Bahlis said he hoped that we would have a good year but was hoping for a long life for Bob. The nurse said she hoped for lots of good years. That is our prayer too.
Dr. Bahlis does not want Bob to go back to work until the new year due to the immunity issue and the vaccines that Bob may require. We still have lots of trips to TBC too. Not sure what the future will be like but the One we trust with our lives does. Let 's give it up for God--Hurrah and thank you.
Thankyou from the bottom of our hearts for the many prayers that have been offered up to God on our behalf. God has heard the cry of our hearts and is doing a miracle in Bob's body and in our hearts and faith. We are so encouraged today, but each day has its own challenges. This is true for each one of us. My desire would be that each of us know God so intimately that each moment of our lives are dependent on Him. No matter the outcomes of life's daily challenges we would be able to trust that God has our backs.
We were told that the two vials of liquid from the bone marrow contained......wait for it.........NO myeloma cells. However, the more solid sample that contained scar tissue had 30% active myeloma. The remission word was used but with the caveat of this spot of myeloma. Tomorrow Bob has a PET scan scheduled (cycletron must be up and working again). The scan will show if that is the only active spot or if there are others. To receive that news we will have an appointment in two weeks.
In two weeks time we go back across the hall to Dr. Bahis' regular clinic where we will have the PET scan results AND Bob will begin another regime of chemo. So pleased Bob graduated but sadly this is the clinic that has long waits. This is also a Wed. clinic. Being on Wed. doesn't really mean to much, as our calendars are able to be very fluid!!!!!LOL
The plan is that Bob may receive radiation on the spot of myeloma. He hasn't had radiation since he was first diagnosed and it was only on his back. Radiation will depend on the PET. Bob will also begin a maintenance dose of velcade and pomalyst. This will be 3 weeks on and 1week off. The velcade is given by intravenous once a week at TBC. The pomalyst is oral. We are so thankful, that for now, Bob will not be on a steroid.
For my medical friends and family: WBC 5.2
RBC 3.3 still a wee bit low
HGB 104 " " "
Platelets 104 " " "'
Kappa free 9.04
Lambda free 11.10
Kappa/Lambda free ratio .81 (this is where we all whooot)
U protein .09
Is that all you need, Donna??????
Soooooo we are pretty pumped. Dr. Bahlis said he hoped that we would have a good year but was hoping for a long life for Bob. The nurse said she hoped for lots of good years. That is our prayer too.
Dr. Bahlis does not want Bob to go back to work until the new year due to the immunity issue and the vaccines that Bob may require. We still have lots of trips to TBC too. Not sure what the future will be like but the One we trust with our lives does. Let 's give it up for God--Hurrah and thank you.
Thankyou from the bottom of our hearts for the many prayers that have been offered up to God on our behalf. God has heard the cry of our hearts and is doing a miracle in Bob's body and in our hearts and faith. We are so encouraged today, but each day has its own challenges. This is true for each one of us. My desire would be that each of us know God so intimately that each moment of our lives are dependent on Him. No matter the outcomes of life's daily challenges we would be able to trust that God has our backs.
Wednesday, October 28, 2015
NEXT WEEK?????
Well, today (Oct 19) we went to the South Health Campus to meet with an oncology cardiologist. He will review the heart MRI that Bob had taken last week.
I have to say going to the SHC is just awesome compared to driving to Tom Baker. Forty -five minutes to TBC and then the parking ordeal before you even get close to an entrance door!!!! Altho FYI we are very happy with all the care Bob has received at the TBC. Today tho, 20 minutes from our parking garage to sitting in the cardiology dept.---5th floor!!!!Ahhhhhhhh.
Another super doctor, who is also an assistant professor of cardiology at U. of C, is now OUR cardiologist. Dr. K. thinks Bob is heart healthy, all things considered. The left "pump" is 42% and hasn't changed in 5years. Praise God. The feet swelling is, he believes, venous stasis. This is congestion and slowing of circulation in the veins. Venous stasis is a risk factor for a blood clot. However the doc feels it is from to much sitting. Soooo, not sure how to change that as Bob does walk each day and drinks at least 2 litres of water. Instead of sitting he is now laying on the couch with his feet elevated!!!!!!!! Ha Ha. Bob also got a prescription for those--pressure socks.
Bob is also part of the number of cancer patients who have had their PET scans cancelled. The province's only cyclotron machine has broken down twice in the last two months. AHS is sourcing the particles from other provinces for the most urgent cases. We aren't sure when the scan will be rescheduled. The results of the scan and other tests are to help direct up coming therapy.
Yesterday (Oct.27) we made the trek to TBC. We were expecting more info but that was not to be. Dr. Bahlis did the bone marrow aspiration. That should tell the tale of how successful the transplant is. The sample was taken from the area , of what the Dr. said, was a lot of mueloma . He had to "drill" through some scar tissue. The thinking is; this spot would provide a sample be a with the most myeloma. Another aspiration may be done on the other hip, depending on these results.
The ducks should ALMOST all be in a row for the "staging". We understand staging is; any drugs, treatments etc. that the Dr. would plan to give Bob moving forward. However the PET scan hasn't been done, as of today. The scan plays a big part in the staging as all the lesions (tumors) will show up and especially any new ones. Dr. B is trying to get the PET scan done but, well, until the cyclotron is up and running effectively that may not happen.
We didn't get the actual number counts this week--seemed like to much going on. From what was said tho I am thinking we are on the cusp of normal or Bob's numbers are normal. I know the white blood cells are normal.
We have decided to venture farther afield this weekend. We are going to Edmonton to see Mike, Cori and kids. We have Cavi wipes for the hotel----thanks Barbie. Bob still wears a mask depending on where we are, we have lots of hand sanitizer so we are all set. It will be fun and we will see how this turns out.
Oh, and today is Day 62 post transplant. Medical professionals use the 100 day mark as being the end of the early recovery phase. At that three month time frame the reimmunization will begin.
Pray that Bob will stay healthy and continue to become stronger.
I realize that many folks don't believe in or get vaccinations. This is especially true of the flu vaccine. HOWEVER in my humble opinion; by getting the vaccine you may be protecting many people around you. People at your work place, in your church, in your school, or at the shopping centre could be protected by the vaccines you have received. There are young children, old grannies and poppas with lower immune systems. There could be pregnant women, disabled people who most often have a compromised systems. Maybe someone you know and love is undergoing treatment for cancer or other long term illnesses. Those folks are also often immuno-compromised. Should you be a healthy person, help out those who aren't, by being vaccinated. I believe that getting vaccinated is a very unselfish act. If you disagree, I don't want to know. :-)
I have to say going to the SHC is just awesome compared to driving to Tom Baker. Forty -five minutes to TBC and then the parking ordeal before you even get close to an entrance door!!!! Altho FYI we are very happy with all the care Bob has received at the TBC. Today tho, 20 minutes from our parking garage to sitting in the cardiology dept.---5th floor!!!!Ahhhhhhhh.
Another super doctor, who is also an assistant professor of cardiology at U. of C, is now OUR cardiologist. Dr. K. thinks Bob is heart healthy, all things considered. The left "pump" is 42% and hasn't changed in 5years. Praise God. The feet swelling is, he believes, venous stasis. This is congestion and slowing of circulation in the veins. Venous stasis is a risk factor for a blood clot. However the doc feels it is from to much sitting. Soooo, not sure how to change that as Bob does walk each day and drinks at least 2 litres of water. Instead of sitting he is now laying on the couch with his feet elevated!!!!!!!! Ha Ha. Bob also got a prescription for those--pressure socks.
Bob is also part of the number of cancer patients who have had their PET scans cancelled. The province's only cyclotron machine has broken down twice in the last two months. AHS is sourcing the particles from other provinces for the most urgent cases. We aren't sure when the scan will be rescheduled. The results of the scan and other tests are to help direct up coming therapy.
Yesterday (Oct.27) we made the trek to TBC. We were expecting more info but that was not to be. Dr. Bahlis did the bone marrow aspiration. That should tell the tale of how successful the transplant is. The sample was taken from the area , of what the Dr. said, was a lot of mueloma . He had to "drill" through some scar tissue. The thinking is; this spot would provide a sample be a with the most myeloma. Another aspiration may be done on the other hip, depending on these results.
The ducks should ALMOST all be in a row for the "staging". We understand staging is; any drugs, treatments etc. that the Dr. would plan to give Bob moving forward. However the PET scan hasn't been done, as of today. The scan plays a big part in the staging as all the lesions (tumors) will show up and especially any new ones. Dr. B is trying to get the PET scan done but, well, until the cyclotron is up and running effectively that may not happen.
We didn't get the actual number counts this week--seemed like to much going on. From what was said tho I am thinking we are on the cusp of normal or Bob's numbers are normal. I know the white blood cells are normal.
We have decided to venture farther afield this weekend. We are going to Edmonton to see Mike, Cori and kids. We have Cavi wipes for the hotel----thanks Barbie. Bob still wears a mask depending on where we are, we have lots of hand sanitizer so we are all set. It will be fun and we will see how this turns out.
Oh, and today is Day 62 post transplant. Medical professionals use the 100 day mark as being the end of the early recovery phase. At that three month time frame the reimmunization will begin.
Pray that Bob will stay healthy and continue to become stronger.
I realize that many folks don't believe in or get vaccinations. This is especially true of the flu vaccine. HOWEVER in my humble opinion; by getting the vaccine you may be protecting many people around you. People at your work place, in your church, in your school, or at the shopping centre could be protected by the vaccines you have received. There are young children, old grannies and poppas with lower immune systems. There could be pregnant women, disabled people who most often have a compromised systems. Maybe someone you know and love is undergoing treatment for cancer or other long term illnesses. Those folks are also often immuno-compromised. Should you be a healthy person, help out those who aren't, by being vaccinated. I believe that getting vaccinated is a very unselfish act. If you disagree, I don't want to know. :-)
Wednesday, October 14, 2015
NEVER GIVE UP
In the not to distant past I was asked how long does one keep getting treatment. Treatment that is hard on the body and mind. Treatment that is costly and someone has to pay for it. Fortunately Bob's medical coverage from work covers our costs. Prescription costs alone from Jan to Aug were almost 120 thousand for us. Yep, someone is paying for that--insurance companies. Insurance companies who receive premiums from companies and individuals. Yes it is costly. I am not sure what will happen to us when Bob does not have his job. Blue Cross for seniors, from what we can decipher, does not pay 120 thousand for prescriptions.
Well Tuesday saw us back at the BMT clinic at Tom Baker. The blood counts are good. Bob will not have a tandem transplant as all of the stem cells were used. The bone marrow aspiration will take place in 2 weeks time and we won't hear about it for probably another 2 weeks after that. If your math is good you will already know we won't know how successful the transplant is for a month. In the mean time we are still working at getting the pain under control. Bob's hip is still bad. Morphine becomes his friend. Bob will also have a PET scan of his body, an MRI of the pelvic, hip areas and a visit to an oncology cardiologist plus an echo cardiogram. Bob's feet have been getting more and more swollen. Often, the feet do not recover over night. The doctors think that it could be from his heart being compromised. There is damage to the heart muscle so it does not pump as efficiently as it could. The blood is not being circulated to the extremities as well as expected. I think that is a close to correct explanation. This entire process is also considered staging which means that once all of these facts are put together another protocol will be considered to keep the myeloma at bay. Dr. Bahlis told us about two new drugs that he will be able to obtain on trial. Bob has already used the other drugs available for myeloma.
My first reaction was to blow out and deflate.......It is one of those things that we know in our heads-- there is no cure for myeloma, yet we always hold out hope that there would be a miracle that would take away pain and disease. Like Paul the apostle says: "I have fought the good fight, I have finished the race, I have kept the faith." We have faith that God has us in His hands and will care for Bob and I no matter the circumstances. We need to be faithful to living our lives to honor our Lord.
I picked up a pamphlet that I have seen and read many times over the past years from the Southern Alberta Myeloma Patient Society. The front says:
I am BRAVE
I am STRONG
I will not QUIT
I am a WARRIOR
My husband is a fighter, relying on the grace of God, to live with determination to fight this disease.
So Bob is getting treatment until there is no treatment. He will never give up.
Well Tuesday saw us back at the BMT clinic at Tom Baker. The blood counts are good. Bob will not have a tandem transplant as all of the stem cells were used. The bone marrow aspiration will take place in 2 weeks time and we won't hear about it for probably another 2 weeks after that. If your math is good you will already know we won't know how successful the transplant is for a month. In the mean time we are still working at getting the pain under control. Bob's hip is still bad. Morphine becomes his friend. Bob will also have a PET scan of his body, an MRI of the pelvic, hip areas and a visit to an oncology cardiologist plus an echo cardiogram. Bob's feet have been getting more and more swollen. Often, the feet do not recover over night. The doctors think that it could be from his heart being compromised. There is damage to the heart muscle so it does not pump as efficiently as it could. The blood is not being circulated to the extremities as well as expected. I think that is a close to correct explanation. This entire process is also considered staging which means that once all of these facts are put together another protocol will be considered to keep the myeloma at bay. Dr. Bahlis told us about two new drugs that he will be able to obtain on trial. Bob has already used the other drugs available for myeloma.
My first reaction was to blow out and deflate.......It is one of those things that we know in our heads-- there is no cure for myeloma, yet we always hold out hope that there would be a miracle that would take away pain and disease. Like Paul the apostle says: "I have fought the good fight, I have finished the race, I have kept the faith." We have faith that God has us in His hands and will care for Bob and I no matter the circumstances. We need to be faithful to living our lives to honor our Lord.
I picked up a pamphlet that I have seen and read many times over the past years from the Southern Alberta Myeloma Patient Society. The front says:
I am BRAVE
I am STRONG
I will not QUIT
I am a WARRIOR
My husband is a fighter, relying on the grace of God, to live with determination to fight this disease.
So Bob is getting treatment until there is no treatment. He will never give up.
Tuesday, October 6, 2015
STATUS QUO
The last week or so I haven't spent much time reading those fluffy books, that I do enjoy. You know the ones-----you can skip a lot of words and still get the gist of the story as you watch CASTLE on TV. However I have started to read an interesting spy book but I have to read and think about what is written and all the details or I miss the important parts and facts of the story. It is also very exciting, the espionage, the Russian spies so infiltrated into American life that one particular spy, is the most renowned US air force pilot. He is able to fly a very particular plane with his mind.!!!!!!!!!!!!
Today was the day for our trip to the BMT clinic at Tom Baker Cancer Centre. We had some questions to ask plus Dr. Bahlis had planned, 3 weeks ago, that today he would do the bone marrow aspiration to see what the state of the myeloma (cancer) is in the marrow. We are praying that the chemo and transplant will have been successful and the myeloma would be gone. The wait at the lab was a longer than usual so I could get into my book.
The nurse took Bob's vitals and then our nurse came to discuss concerns etc with us. Here the information gets...........I don't know...almost scary. First off, all of the information we were given before transplant was how to be so careful because of the lack of immunity that Bob has. Today his WBC is at 8.7 which is well into the normal range. The neutrophils are at 3.6 which is also well into normal. These are the body's fighters of infection, from what I understand. However, the bloods memory of immunizations has been diminished--to what point we don't know. Bob would still be susceptible to measles, chickenpox, TB and almost anything out there. We have been keeping well out of any groups of people. We have had adult, healthy visitors come and spend some time with us. Thank you. Bob and I walk outside and he doesn't wear a mask. He wears the mask getting to our car and in any stores. Bob has only been in stores early in the day, or when there aren't many people present. I am a rule follower and we have followed the rules. WELL
Today the nurse reaffirmed that Bob could now eat whatever he wants to. His appetite is still not great but he will usually eat something. The mask he wears is really only good for about 15minutes, then the moisture from the nose and mouth destroys the effectiveness. We do have some of those better industrial ones that we may use in some situations. Bob was told that he will get sick and all we watch for are fevers. The worry is pneumonia. However we need to phone in any colds etc.
Bob is still to only go into stores or malls early in the day. We are to stay away from sick people of any size. However we can see our grandkids (little ones) should they have no runny noses or coughs. The older grandkids have visited grandpa already. It is like---do what you want---but be careful.---Even a road trip!!!! All this before the 100 day mark. We are at day 40. Unheard of in some medical circles. Makes me a bit nervous.
Bob's hemoglobin was 107 today----down a bit from 2 weeks ago. The platelet count is at 120, which is still below normal, creatine is 87 so that is a good sign.
Today we also had a meeting with the pharmacist. The oncology pharmacists all seem to be young women.----Great field to promote----. The plan is to get the pain under control. We now have a plan----kinda the same, kinda different. Bob has any drug available to him to help with pain, hmmmm (also scary for me). AND, Oh, Dr. Bahlis is away.............so we wont know what the transplant did as far as defeating the cancer for a few more weeks. We needed to wait for the young Dr. we had last time to come and see us. No real reason----just because. So the wait became kinda long but sheesh, would the nurses stop popping in to check on us and mention something else. I am back into the book. This is a fictional book but Bob and I always say that a fictional book may have some truth in it. The big deal is ANTARES ------- Advanced Neural Transfer and Response System..which is a method for digitizing and transmitting neural impulses from the human body to a computer, and vice versa. Not so fluffy, this book but very interesting!!!!! Here is our young doctor checking in on us, he lets us know that Dr. Bahlis will be back next week and will discuss which small dose of chemo drug Bob will go on, to the keep the myeloma at bay.
Pray with us for no cancer and no pain in Bob's hip.
Today was the day for our trip to the BMT clinic at Tom Baker Cancer Centre. We had some questions to ask plus Dr. Bahlis had planned, 3 weeks ago, that today he would do the bone marrow aspiration to see what the state of the myeloma (cancer) is in the marrow. We are praying that the chemo and transplant will have been successful and the myeloma would be gone. The wait at the lab was a longer than usual so I could get into my book.
The nurse took Bob's vitals and then our nurse came to discuss concerns etc with us. Here the information gets...........I don't know...almost scary. First off, all of the information we were given before transplant was how to be so careful because of the lack of immunity that Bob has. Today his WBC is at 8.7 which is well into the normal range. The neutrophils are at 3.6 which is also well into normal. These are the body's fighters of infection, from what I understand. However, the bloods memory of immunizations has been diminished--to what point we don't know. Bob would still be susceptible to measles, chickenpox, TB and almost anything out there. We have been keeping well out of any groups of people. We have had adult, healthy visitors come and spend some time with us. Thank you. Bob and I walk outside and he doesn't wear a mask. He wears the mask getting to our car and in any stores. Bob has only been in stores early in the day, or when there aren't many people present. I am a rule follower and we have followed the rules. WELL
Today the nurse reaffirmed that Bob could now eat whatever he wants to. His appetite is still not great but he will usually eat something. The mask he wears is really only good for about 15minutes, then the moisture from the nose and mouth destroys the effectiveness. We do have some of those better industrial ones that we may use in some situations. Bob was told that he will get sick and all we watch for are fevers. The worry is pneumonia. However we need to phone in any colds etc.
Bob is still to only go into stores or malls early in the day. We are to stay away from sick people of any size. However we can see our grandkids (little ones) should they have no runny noses or coughs. The older grandkids have visited grandpa already. It is like---do what you want---but be careful.---Even a road trip!!!! All this before the 100 day mark. We are at day 40. Unheard of in some medical circles. Makes me a bit nervous.
Bob's hemoglobin was 107 today----down a bit from 2 weeks ago. The platelet count is at 120, which is still below normal, creatine is 87 so that is a good sign.
Today we also had a meeting with the pharmacist. The oncology pharmacists all seem to be young women.----Great field to promote----. The plan is to get the pain under control. We now have a plan----kinda the same, kinda different. Bob has any drug available to him to help with pain, hmmmm (also scary for me). AND, Oh, Dr. Bahlis is away.............so we wont know what the transplant did as far as defeating the cancer for a few more weeks. We needed to wait for the young Dr. we had last time to come and see us. No real reason----just because. So the wait became kinda long but sheesh, would the nurses stop popping in to check on us and mention something else. I am back into the book. This is a fictional book but Bob and I always say that a fictional book may have some truth in it. The big deal is ANTARES ------- Advanced Neural Transfer and Response System..which is a method for digitizing and transmitting neural impulses from the human body to a computer, and vice versa. Not so fluffy, this book but very interesting!!!!! Here is our young doctor checking in on us, he lets us know that Dr. Bahlis will be back next week and will discuss which small dose of chemo drug Bob will go on, to the keep the myeloma at bay.
Pray with us for no cancer and no pain in Bob's hip.
Tuesday, September 22, 2015
READJUSTMENT
Today we were back at the BMT clinic. We were to see a nurse who would asses Bob's progress. Dr. B is on holiday so we knew we would not be seeing him. However the pain in Bob's hip has gotten so bad that it takes a fair chunk of the day and a number of pills to become mobile. Our minds were made up...........today we would "demand" to know what the pain was from. Bob had a number of full body scans prior to the transplant so if there was something there on the hip it should have been seen. Well we upset the applecart. I think the nurses thought this visit would be
tickety-boo easy. After the nursing assessments the nurse said that we needed to change the pain meds. In order to get a prescription, of course, one needs a doctor. The doc who was in the clinic didn't see us--he was seeing his patients and perhaps they don't cross over. Anyway, after some time we got to see Dr. Bahlis' fellow. The nurse said that he was an excellent doctor. In my crazy mind I was thinking butler??, cleans up in the lab??? Turns out a fellow is a doctor who has done an internship and residency and is now working in a specialty. I am thinking research oncologist in multiple myeloma. (Ya think?)
This young man was excellent and decided on a course of pain control. In the course of the conversation he told us about all of the lesions Bob had all over his skeleton. The one on the left hip was much larger than where the pain was on the right. He also explained how the steroids can make the bone wall thinner. Bob and I must have been in la la land because we were not aware of the extent of the lesions. Each time Bob had a scan we were told there weren't any new lesions. So either Bob had all these lesions seven years ago or we were being spared worry or we missed the whole thing. Nothing more could have been done given all the circumstances around Bob's diagnosis. Bob has been taking steroids the whole seven years and we did not know that side affect. However in all reality what difference would it have made --knowing all of that????
Today though, that information hit very hard right in the gut. Our young Dr. caught on pretty quick that we did not know these things. I think the tears gave it away. So many things raced through our minds, it was just a horrible experience again. It is a long ride home and we decided to drown our sorrows in a fast food joint. Hamburger, fries and a fountain drink. Not super smart for Bob but we did it. YUMMY. As we talked we knew we had to readjust some of our gut reaction. Nothing has changed. We are still asking the Lord for a miracle of remission. Bob says he now realizes how critical it is to be careful walking etc. so as not hurry along a broken bone. He has been careful but now "gets it". Pray that there aren't any spontaneous breaks.
Should Bob only have the transplant to recover from he would be dancing. He is doing well. WBC-8.3,HGB-120, Platelets-- 142. A little more to go but looking good. No fevers, no bowel problems, no urinary problem, no mouth sores. Bob lost some weight, that was a concern to the nurse. However he has started to eat better.
We have readjusted our load and will do the best we can, moving to the summit.
My life verse is Phil 4:13 I can do all things through Christ who strengthens me.
How else could we manage????
tickety-boo easy. After the nursing assessments the nurse said that we needed to change the pain meds. In order to get a prescription, of course, one needs a doctor. The doc who was in the clinic didn't see us--he was seeing his patients and perhaps they don't cross over. Anyway, after some time we got to see Dr. Bahlis' fellow. The nurse said that he was an excellent doctor. In my crazy mind I was thinking butler??, cleans up in the lab??? Turns out a fellow is a doctor who has done an internship and residency and is now working in a specialty. I am thinking research oncologist in multiple myeloma. (Ya think?)
This young man was excellent and decided on a course of pain control. In the course of the conversation he told us about all of the lesions Bob had all over his skeleton. The one on the left hip was much larger than where the pain was on the right. He also explained how the steroids can make the bone wall thinner. Bob and I must have been in la la land because we were not aware of the extent of the lesions. Each time Bob had a scan we were told there weren't any new lesions. So either Bob had all these lesions seven years ago or we were being spared worry or we missed the whole thing. Nothing more could have been done given all the circumstances around Bob's diagnosis. Bob has been taking steroids the whole seven years and we did not know that side affect. However in all reality what difference would it have made --knowing all of that????
Today though, that information hit very hard right in the gut. Our young Dr. caught on pretty quick that we did not know these things. I think the tears gave it away. So many things raced through our minds, it was just a horrible experience again. It is a long ride home and we decided to drown our sorrows in a fast food joint. Hamburger, fries and a fountain drink. Not super smart for Bob but we did it. YUMMY. As we talked we knew we had to readjust some of our gut reaction. Nothing has changed. We are still asking the Lord for a miracle of remission. Bob says he now realizes how critical it is to be careful walking etc. so as not hurry along a broken bone. He has been careful but now "gets it". Pray that there aren't any spontaneous breaks.
Should Bob only have the transplant to recover from he would be dancing. He is doing well. WBC-8.3,HGB-120, Platelets-- 142. A little more to go but looking good. No fevers, no bowel problems, no urinary problem, no mouth sores. Bob lost some weight, that was a concern to the nurse. However he has started to eat better.
We have readjusted our load and will do the best we can, moving to the summit.
My life verse is Phil 4:13 I can do all things through Christ who strengthens me.
How else could we manage????
Saturday, September 12, 2015
ON OUR WAY
We are now on the way up the mountain. We left the hospital on Friday(the 11th). For Bob he was very happy and very excited to be going home with the prospect of feeling better. I on the other hand, was intimidated by what may be ahead. However after only a day at home I can say thank you for the many prayers---God has this!!!!!!!!
On Wed (9) Bob was still spiking fevers and was very shaky. That day Bob had an MRI. Once the results were back from the MRI plus all the various blood and pee sample and tests the medical people could not find the cause of the fever. There didn't seem to be any infection plus the blood counts were on the way up. Dr. Nancy, the transplant doctor, decided the only thing left to do was to take out the CVC line. So on Wed evening she did just that. Bob said he felt a tremendous sense of relief with that gone. I shudder to think of all the meds and blood plus the blood cells and saline that went directly into his heart. That night Bob still had a fever but it was controllable. The doctor kept him in one more day and night and ta da no fever on Thurs night. Bob and I are of the opinion that his body did not like the line and that was the only way it could fight back. The docs ran tests on the line and there wasn't any bacteria or other yukkies in it. We are happy with our theory.
Bob is happy at home, working on the computer. His mind is more clear. I take his temp every four hours and no fevers. Should that happen we are back in hospital asap. He still has a bed in unit 57 until Mon. On Tues morning (15) we become the responsibility of The Bone Marrow Transplant Clinic and Dr. Bahlis. We will be going there for maybe 2 1/2 to 3 months depending on how well Bob does in recovery. Then he needs all his immunizations again---they may skip the kindergarten shot.
Last night, Bob's first night home, we celebrated with a fire alarm in our building. Never realized how disorientated you can become waking up to that noise. We made it down the stairs and out side before we realized Bob had no mask or cane!!! Adrenalin is an amazing rush. We also realized most everyone in our building wears jammies to bed and forgets their glasses!!!! My friend, a nurse, said that without the mask on Bob, it was not a time to visit!!!!! She was also the one to ask if the firemen were good looking---no glasses!!!!ha ha!!!! Not sure what the alarm was all about but we did smell and see smoke on our floor, but not acrid. Maybe one of those hooka pipes gone astray.
Anyhow, my fears are being assailed, with Bob at home, and we are on the way up the mountain to a healthy Bob.
Should we cross your minds please pray for Bob's recovery and remission.
On Wed (9) Bob was still spiking fevers and was very shaky. That day Bob had an MRI. Once the results were back from the MRI plus all the various blood and pee sample and tests the medical people could not find the cause of the fever. There didn't seem to be any infection plus the blood counts were on the way up. Dr. Nancy, the transplant doctor, decided the only thing left to do was to take out the CVC line. So on Wed evening she did just that. Bob said he felt a tremendous sense of relief with that gone. I shudder to think of all the meds and blood plus the blood cells and saline that went directly into his heart. That night Bob still had a fever but it was controllable. The doctor kept him in one more day and night and ta da no fever on Thurs night. Bob and I are of the opinion that his body did not like the line and that was the only way it could fight back. The docs ran tests on the line and there wasn't any bacteria or other yukkies in it. We are happy with our theory.
Bob is happy at home, working on the computer. His mind is more clear. I take his temp every four hours and no fevers. Should that happen we are back in hospital asap. He still has a bed in unit 57 until Mon. On Tues morning (15) we become the responsibility of The Bone Marrow Transplant Clinic and Dr. Bahlis. We will be going there for maybe 2 1/2 to 3 months depending on how well Bob does in recovery. Then he needs all his immunizations again---they may skip the kindergarten shot.
Last night, Bob's first night home, we celebrated with a fire alarm in our building. Never realized how disorientated you can become waking up to that noise. We made it down the stairs and out side before we realized Bob had no mask or cane!!! Adrenalin is an amazing rush. We also realized most everyone in our building wears jammies to bed and forgets their glasses!!!! My friend, a nurse, said that without the mask on Bob, it was not a time to visit!!!!! She was also the one to ask if the firemen were good looking---no glasses!!!!ha ha!!!! Not sure what the alarm was all about but we did smell and see smoke on our floor, but not acrid. Maybe one of those hooka pipes gone astray.
Anyhow, my fears are being assailed, with Bob at home, and we are on the way up the mountain to a healthy Bob.
Should we cross your minds please pray for Bob's recovery and remission.
Tuesday, September 8, 2015
BASE CAMP
A friend of ours sent Bob and I an encouraging note. In the note she used the simile that we had a tall mountain before us and that together we would be able to climb it, get to the summit and then be able to descend to "normal" life. The mountain, of course, is Bob's recovery from the stem cell transplant. The summit would be remission and the descent would be to a time of less drugs, less side affects, a time of less stress.
Thinking about this, I believe that we are still at base camp. I have read some about the groups who make the climb of Mount Everest. All the preparation is done at the base camp. The supplies are all brought in and stored for the trip up the mountain. Short climbs are made to help the climbers adapt to the changing, thinner atmosphere. After these climbs it is back to base to make changes, tweek the plans. All around the base camp are prayer flags. They remind me of the buntings many of us have up in our homes.
All around Bob and I, we can feel the prayers of so many. We have notes and phone calls from people who are upholding us to The Great Physician. We truly have peace that God knows the way up the mountain and when the course is set, Bob will be discharged from hospital and the climb will begin.
Bob keeps spiking a fever pretty much daily. As I write this, the staff cannot find a definitive reason for the fevers. Bob has had so many blood tests and cultures done that we will be listening to opera on the way up the mountain. He has had two blood transfusions to help give him energy and health to adapt to the new situations. Antibiotics are packed on in preparation for leaving camp. Some days Bob thinks it is getting close "we will leave soon". Then we have the experts come in and say more tweeking to do. As the platelets increase the fevers should diminish. The blood counts are all going in the right direction ---up. The blood sugar has been more in the normal range lately. That will be an answer to prayer when the blood sugar stays normal. Bob will need a touque, as his hair has fallen out. Maybe this time it will come back on top too!!! Maybe it will be dark and wavy, the way I can still see him in my mind. :-} ah when we were young. Bob may need a new parka as he often gets shivers and chills. He also gets some bad, hmmm we call them twitches, don't know what causes that either.
Waiting and preparing in base camp is getting a little tiring. We know that our guide, the Lord Jesus, wants both of us in the best possible condition. So we will wait amidst the prayers and trust that we will be ready to make the ascent.
Thinking about this, I believe that we are still at base camp. I have read some about the groups who make the climb of Mount Everest. All the preparation is done at the base camp. The supplies are all brought in and stored for the trip up the mountain. Short climbs are made to help the climbers adapt to the changing, thinner atmosphere. After these climbs it is back to base to make changes, tweek the plans. All around the base camp are prayer flags. They remind me of the buntings many of us have up in our homes.
All around Bob and I, we can feel the prayers of so many. We have notes and phone calls from people who are upholding us to The Great Physician. We truly have peace that God knows the way up the mountain and when the course is set, Bob will be discharged from hospital and the climb will begin.
Bob keeps spiking a fever pretty much daily. As I write this, the staff cannot find a definitive reason for the fevers. Bob has had so many blood tests and cultures done that we will be listening to opera on the way up the mountain. He has had two blood transfusions to help give him energy and health to adapt to the new situations. Antibiotics are packed on in preparation for leaving camp. Some days Bob thinks it is getting close "we will leave soon". Then we have the experts come in and say more tweeking to do. As the platelets increase the fevers should diminish. The blood counts are all going in the right direction ---up. The blood sugar has been more in the normal range lately. That will be an answer to prayer when the blood sugar stays normal. Bob will need a touque, as his hair has fallen out. Maybe this time it will come back on top too!!! Maybe it will be dark and wavy, the way I can still see him in my mind. :-} ah when we were young. Bob may need a new parka as he often gets shivers and chills. He also gets some bad, hmmm we call them twitches, don't know what causes that either.
Waiting and preparing in base camp is getting a little tiring. We know that our guide, the Lord Jesus, wants both of us in the best possible condition. So we will wait amidst the prayers and trust that we will be ready to make the ascent.
Thursday, September 3, 2015
SEPTEMBER AGAIN
Here we are at day 7 post transplant, that makes today Sept.3. Our grandkids in Calgary are back in school. I wore a sweater today and so it is Sept.
Bob is now in the hospital full time for the next while. His platelet count is a .1 this morning. That is it--now it should start to go up. Today Bob received the hormone that will stimulate the stem cells to reproduce and make all of the different blood cells. We were told days7-9 are the lowest and today, when I got to the hospital, was very different for Bob than yesterday was. Yesterday he wanted his model, we went for a longish walk and sat in a lounge area. He wanted his own pillow as he was: "tired of sleeping on first base". Bob also wanted his computer. I delivered it all and in all reality it didn't matter. He hurts in a lot of different places, so he has now been given morphine. He hasn't actually vomited but has a very queasy stomach. No sores in his mouth but has a sore throat----normal---that makes it hard to swallow. Bob was told that when it gets to bad the nurses will spray the throat with an anesthetic so he can swallow without it hurting. He has to be able to swallow meds before he comes home. I suppose without the anesthetic. As the next days unfold apparently he will eat even less. They do make a loaded milkshake that Bob says is very tasty. The platelets being gone, well,transplant patients bleed from a number of sites and Bob is too. Today we only took a very short walk and then back to bed. He is so very sleepy. Some folks say sleep cures most everything!!!! Bob is still taking insulin but I truly believe that the high blood sugar is from the mish mash of drugs.
Today is also the hardest day for me. Watching Bob fight so hard to beat this cancer, takes me back to the horrors of 7 years ago when he began this fight. Bob loves me and our family so much that he has endured so much. He is truly my hero. He is my inspiration to keep going and not give up.
God has walked and held our hands these long 7 years. It is so tiring, this journey is. Please pray very specifically that once all of this is over Bob will be in remission and stay in remission for 7 years or longer. Pray that Bob will not be diabetic, from drugs or otherwise, once we are back on steady ground. Pray that I will experience continuing grace and peace. Pray that we, as a couple, will not be overwhelmed.
Bob is now in the hospital full time for the next while. His platelet count is a .1 this morning. That is it--now it should start to go up. Today Bob received the hormone that will stimulate the stem cells to reproduce and make all of the different blood cells. We were told days7-9 are the lowest and today, when I got to the hospital, was very different for Bob than yesterday was. Yesterday he wanted his model, we went for a longish walk and sat in a lounge area. He wanted his own pillow as he was: "tired of sleeping on first base". Bob also wanted his computer. I delivered it all and in all reality it didn't matter. He hurts in a lot of different places, so he has now been given morphine. He hasn't actually vomited but has a very queasy stomach. No sores in his mouth but has a sore throat----normal---that makes it hard to swallow. Bob was told that when it gets to bad the nurses will spray the throat with an anesthetic so he can swallow without it hurting. He has to be able to swallow meds before he comes home. I suppose without the anesthetic. As the next days unfold apparently he will eat even less. They do make a loaded milkshake that Bob says is very tasty. The platelets being gone, well,transplant patients bleed from a number of sites and Bob is too. Today we only took a very short walk and then back to bed. He is so very sleepy. Some folks say sleep cures most everything!!!! Bob is still taking insulin but I truly believe that the high blood sugar is from the mish mash of drugs.
Today is also the hardest day for me. Watching Bob fight so hard to beat this cancer, takes me back to the horrors of 7 years ago when he began this fight. Bob loves me and our family so much that he has endured so much. He is truly my hero. He is my inspiration to keep going and not give up.
God has walked and held our hands these long 7 years. It is so tiring, this journey is. Please pray very specifically that once all of this is over Bob will be in remission and stay in remission for 7 years or longer. Pray that Bob will not be diabetic, from drugs or otherwise, once we are back on steady ground. Pray that I will experience continuing grace and peace. Pray that we, as a couple, will not be overwhelmed.
Saturday, August 29, 2015
REALITY IS A TOUGH SLUG
Today is Friday August 28, 2015. Today is day 1,post transplant for my husband. Yesterday Bob had a stem cell transplant. I do not pretend to understand how this all works. However I do know that God created our bodies, in their complexity, and how mere men are learning to use our bodies for good is very amazing. Bob's stem cells waited for six years to be put back into his body. The nurses who were part of the process are all young. None of them had seen the "old" bags in which they were frozen. None of them had given cells that were that old. How fast the world we live in changes.
Bob's transplant is an autologous transplant because the stem cells were taken from his own body. Now that they have been returned these baby cells will find their way into the bone marrow. where I believe they will engraft and become red and white cells and platelets---unbelievable. They will change from the immature cells to mature cells before entering the blood. Bob had the chemo drug malfalin that will lower the blood counts. We go back to the hospital on Mon.( Aug.30) morning for 8:30am which will be day 4 post transplant. This is when the blood will be checked to see what the counts are becoming. Bob will also receive velcade which is a chemo drug that will kill any cancer cells that may have tagged along with the stem cells. On day 7 and daily until the blood counts recover Bob will be given a hormone. The hormone is to help the stem cells grow and help recover the red and white blood cells and platelets in his blood. The thinking is: that by day 14 the recovery should be well on it's way.
That part went reasonably well, thank you Lord, the hard part is in the weeks and maybe months ahead. We learn as we go and I am realizing I am glad we didn't know the details of this part of the journey.
A huge challenge is going to be getting high protein, high calorie food into my guy. With the gut not having the luxury of the ice it is affected by the malfalin. We were told to expect vomiting to begin this weekend. Thankfully the 3 different types of anti nausea meds, we have, seem to have kept that under control. However the lower parts of the digestive tract are creating a different problem which means that at this point no senakot.
Once the blood counts are low he will be required to stay in hospital----I think. The risk of infection is very high then. Infection is the killer. Therefore he has: mouth care, skin care, exercises to do plus short walks. I need to be taking his temp every four hours and strict guidelines as to when we boot it back to the hospital. We still have the CVC line to watch and care for-----I don't do the flushing --- whew. Bob is still on blood thinners. He needs to monitor his blood sugar. We are now using a sliding scale as to the amount of insulin to give.
Bob has no appetite and has only eaten very small amounts of food. I know that the weight is a huge issue as Bob will not be discharged until weight loss stops.
He is very tired, sleeps lots---of course the hospital is not a place to rest. Bob has only been home since noon but it seems so busy making sure we do everything and at the appropriate times.
We have two nurse friends in our building who would be willing to help us should we be in a frenzy. Sharon, bless her, checks on us each day, by text, which is reassuring.
We certainly are fearfully and wonderfully made.
Pray Bob will recover well, not be overwhelmed or despondent. Pray that he could be infection free. Pray I will do this with calmness, love and a cheerful spirit.
Well it is now Day 2 post transplant and Bob is back in the hospital. As I was typing up this blog, Bob was tucked into bed. When he called me I thought for sure the nausea was going to start!!! However he was soaking wet with perspiration. His t shirt, the sheets all wet through. He was not making a lot of sense either. I phoned the transplant unit and I was told to bring him back into the hospital. Fortunately Barbie drove us to the hospital. Being the young one she ran to get a wheelchair. Bob was having a hard time walking. We got to the ward, the nurses are so incredible. He had blood tests done asap along with a blood sugar test. His blood sugar showed 2.9 yikes!!!! At suppertime it had been 10 so he took the insulin plus the metforman as per our directions. All of the symptoms could be explained by that blood sugar. However, he is staying the rest of the night and the night owl nurses will watch over him. They plan to check for any infections as well.
There is a lot going on in Bob's body. Trusting him to the Lord...............and the nurses.
Bob's transplant is an autologous transplant because the stem cells were taken from his own body. Now that they have been returned these baby cells will find their way into the bone marrow. where I believe they will engraft and become red and white cells and platelets---unbelievable. They will change from the immature cells to mature cells before entering the blood. Bob had the chemo drug malfalin that will lower the blood counts. We go back to the hospital on Mon.( Aug.30) morning for 8:30am which will be day 4 post transplant. This is when the blood will be checked to see what the counts are becoming. Bob will also receive velcade which is a chemo drug that will kill any cancer cells that may have tagged along with the stem cells. On day 7 and daily until the blood counts recover Bob will be given a hormone. The hormone is to help the stem cells grow and help recover the red and white blood cells and platelets in his blood. The thinking is: that by day 14 the recovery should be well on it's way.
That part went reasonably well, thank you Lord, the hard part is in the weeks and maybe months ahead. We learn as we go and I am realizing I am glad we didn't know the details of this part of the journey.
A huge challenge is going to be getting high protein, high calorie food into my guy. With the gut not having the luxury of the ice it is affected by the malfalin. We were told to expect vomiting to begin this weekend. Thankfully the 3 different types of anti nausea meds, we have, seem to have kept that under control. However the lower parts of the digestive tract are creating a different problem which means that at this point no senakot.
Once the blood counts are low he will be required to stay in hospital----I think. The risk of infection is very high then. Infection is the killer. Therefore he has: mouth care, skin care, exercises to do plus short walks. I need to be taking his temp every four hours and strict guidelines as to when we boot it back to the hospital. We still have the CVC line to watch and care for-----I don't do the flushing --- whew. Bob is still on blood thinners. He needs to monitor his blood sugar. We are now using a sliding scale as to the amount of insulin to give.
Bob has no appetite and has only eaten very small amounts of food. I know that the weight is a huge issue as Bob will not be discharged until weight loss stops.
He is very tired, sleeps lots---of course the hospital is not a place to rest. Bob has only been home since noon but it seems so busy making sure we do everything and at the appropriate times.
We have two nurse friends in our building who would be willing to help us should we be in a frenzy. Sharon, bless her, checks on us each day, by text, which is reassuring.
We certainly are fearfully and wonderfully made.
Pray Bob will recover well, not be overwhelmed or despondent. Pray that he could be infection free. Pray I will do this with calmness, love and a cheerful spirit.
Well it is now Day 2 post transplant and Bob is back in the hospital. As I was typing up this blog, Bob was tucked into bed. When he called me I thought for sure the nausea was going to start!!! However he was soaking wet with perspiration. His t shirt, the sheets all wet through. He was not making a lot of sense either. I phoned the transplant unit and I was told to bring him back into the hospital. Fortunately Barbie drove us to the hospital. Being the young one she ran to get a wheelchair. Bob was having a hard time walking. We got to the ward, the nurses are so incredible. He had blood tests done asap along with a blood sugar test. His blood sugar showed 2.9 yikes!!!! At suppertime it had been 10 so he took the insulin plus the metforman as per our directions. All of the symptoms could be explained by that blood sugar. However, he is staying the rest of the night and the night owl nurses will watch over him. They plan to check for any infections as well.
There is a lot going on in Bob's body. Trusting him to the Lord...............and the nurses.
Sunday, August 23, 2015
RELIEF
It has now been three weeks that Bob has been off of chemo drugs. He is well today.
Bob was diabetic while on the steroids. At times his blood sugar would be 24. It was hard to get control of it as one day he would have the steroid and not the next day. I am sure the up and down was hard on his body in ways we haven't seen....yet.
The terrible cramping that Bob had in his feet and legs along with his hands is pretty much gone. The shaking has stopped. Stopped to the point that he is finishing a model sailing ship that he started last year. He hasn't been steady enough to do it. A co-worker gave him an airplane model and that is what he really wants to get at. He is pretty disciplined to do one project at a time, finish it and move on. Other people aren't wired that way.
The neuropathy in his feet is not near so bad. Bob says it is still there but he doesn't feel the "stones" anymore.
The chemo brain has pretty much disappeared. Bob's mind is much sharper. He is quicker at solving problems and getting thoughts together. He is happy and looks happy.
His tummy has the more normal roundness!!! rather than the protruding it had before.
Bob sleeps way better. He is nodding off every now and again but we say that is his body getting ready for the next phase.
The bruises from being on the warfarin are cleared up. It doesn't look like he was beaten any more. He is still on a blood thinner---Tinzaparin injections. He is on that until after the transplant. At that point everything will be re evaluated.
We have lived a sheltered life for a long time?????but especially since Bob came home because the transplant was set back. He will have to be careful post transplant---more so, but we have no idea where the pneumonia came from and sure did not want any virus, bacteria or fungus to interrupt the transplant this time. I apologize to the folks who wanted to drop over but we asked not to. We want him to be as healthy as possible, but we have no control over where other people have been and what they may carry. Maybe a walk today. Our theory condo-car-condo, but it is beautiful out today. Bob wears a mask out of the condo. We also purchased shares in Johnson&Johnson as we use so much soap and hand cream. NOT
Sooo pleased that the transplant was postponed. I can see my former Bob shining again!!!! Now we will see what happens this week, relief that he is going back to the hospital in much better shape.
Please pray for God's hand of mercy, care, healing and safety. HUGS
Bob was diabetic while on the steroids. At times his blood sugar would be 24. It was hard to get control of it as one day he would have the steroid and not the next day. I am sure the up and down was hard on his body in ways we haven't seen....yet.
The terrible cramping that Bob had in his feet and legs along with his hands is pretty much gone. The shaking has stopped. Stopped to the point that he is finishing a model sailing ship that he started last year. He hasn't been steady enough to do it. A co-worker gave him an airplane model and that is what he really wants to get at. He is pretty disciplined to do one project at a time, finish it and move on. Other people aren't wired that way.
The neuropathy in his feet is not near so bad. Bob says it is still there but he doesn't feel the "stones" anymore.
The chemo brain has pretty much disappeared. Bob's mind is much sharper. He is quicker at solving problems and getting thoughts together. He is happy and looks happy.
His tummy has the more normal roundness!!! rather than the protruding it had before.
Bob sleeps way better. He is nodding off every now and again but we say that is his body getting ready for the next phase.
The bruises from being on the warfarin are cleared up. It doesn't look like he was beaten any more. He is still on a blood thinner---Tinzaparin injections. He is on that until after the transplant. At that point everything will be re evaluated.
We have lived a sheltered life for a long time?????but especially since Bob came home because the transplant was set back. He will have to be careful post transplant---more so, but we have no idea where the pneumonia came from and sure did not want any virus, bacteria or fungus to interrupt the transplant this time. I apologize to the folks who wanted to drop over but we asked not to. We want him to be as healthy as possible, but we have no control over where other people have been and what they may carry. Maybe a walk today. Our theory condo-car-condo, but it is beautiful out today. Bob wears a mask out of the condo. We also purchased shares in Johnson&Johnson as we use so much soap and hand cream. NOT
Sooo pleased that the transplant was postponed. I can see my former Bob shining again!!!! Now we will see what happens this week, relief that he is going back to the hospital in much better shape.
Please pray for God's hand of mercy, care, healing and safety. HUGS
Tuesday, August 18, 2015
BOB IS 'ON DECK"
Today, once again, we were on the road to Tom Baker Cancer Centre. First stop at the BMT clinic. Both of us were thinking we needed a requisition to take to the lab for blood work. Soooo we had arrived early because the waits can often be long. The nurse looks at Bob and asks "don't you have the CVC line in place any longer?". The blood can be taken from that port right here in the clinic-----right we knew that!!!! A chest x-ray later and the changing of the bandages and the removal of a stitch and we are waiting for Dr. Bahlis. One advantage to becoming part of the BMT group of patients is that the waits are not very long. Not sure if that is a real advantage but we will take it.
Dr. Bahlis comes in very smiley!!!!! Should Bob want to continue with the transplant, the team upstairs is willing to do it next week. The x-ray showed a bit of pneumonia but Bob still has a couple days of antibiotics left. We are to keep checking Bob's temp and ANY fever we are to call immediately.
We haven't been sent our new calendar yet but Bob goes back to the unit on Tues. BIG chemo on Wed. and stem cells to be transplanted on Thurs. (Aug.27). Unless that changes, as there are a number of transplants on Wed. ,it will depend on how those Wed. folks are and if there are others having a transplant on Thurs. We will only be 2 weeks behind what was planned.
Bob is doing all he can do to stay healthy. I would like to bubble wrap him with an oxygen tank attached through the bubble wrap. That way maybe he would be pristine. However we know that God is in control. Transplant has been stopped 2x now so we are in the Lord's care once again. This verse from Jer. 29 has given hope for many over the centuries even though it was written for the Israelites in approx 600 BC. "For I know the plans I have for you (Bob)," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope."
Thankyou Lord for Your Word that gives comfort and hope to us.
Dr. Bahlis comes in very smiley!!!!! Should Bob want to continue with the transplant, the team upstairs is willing to do it next week. The x-ray showed a bit of pneumonia but Bob still has a couple days of antibiotics left. We are to keep checking Bob's temp and ANY fever we are to call immediately.
We haven't been sent our new calendar yet but Bob goes back to the unit on Tues. BIG chemo on Wed. and stem cells to be transplanted on Thurs. (Aug.27). Unless that changes, as there are a number of transplants on Wed. ,it will depend on how those Wed. folks are and if there are others having a transplant on Thurs. We will only be 2 weeks behind what was planned.
Bob is doing all he can do to stay healthy. I would like to bubble wrap him with an oxygen tank attached through the bubble wrap. That way maybe he would be pristine. However we know that God is in control. Transplant has been stopped 2x now so we are in the Lord's care once again. This verse from Jer. 29 has given hope for many over the centuries even though it was written for the Israelites in approx 600 BC. "For I know the plans I have for you (Bob)," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope."
Thankyou Lord for Your Word that gives comfort and hope to us.
Wednesday, August 12, 2015
TOMORROW
We sure do not know what tomorrow brings..
I checked my phone before taking the garbage down to the garbage room and there weren't any messages. Upon my return there was a message from Bob saying that he was going to be discharged today. He had been told around discharge would be around 12:00pm but I wasn't to hurry!!! I wanted to hear all of this first hand so I hurried. I was at he hospital by 10:00. Then we played waiting. We were on our way home at 3:10pm. However we spoke to a number of professionals over that time.
Bob does have pneumonia. The stem cell transplant doctor and the team are thinking that the steroids had masked it. When the chemo drugs were stopped, well no more masking!!!! Bob says the prednizone also masked pain as he has a lot more bone pain now. Bob needs to be more healthy as we were told any pre infection would be ----like almost deadly. Bob hasn't had a fever for 24 hours. We came home with a round of antibiotics, no chemo,metforman and a couple of others. Bob stayed wired, the CVC line can apparently stay in for a year???? My only concern was when the nurse gave me a package containing emergency supplies if anything happened to any part of the CVC line. We also got the official rain shield for shower time. Uggggggg.
We needed to talk with the social worker before we could leave. We shared with her about our belief in Jesus and even tho she can't say anything she said enough for us to think she is a believer. Her name is Lori and she introduced us to the green sleeve. Every one in AB needs to have a green sleeve!!!! We wear very little green so we obviously don't have one. Bob had been asked to bring in his will. CREEPERS, but what is needed is the personal directive. Today Lori explained what they want and need. Our wills have our personal directives so we will copy the directive before Bob goes in again. Upon leaving tho, we were given our own green sleeve. It is on our fridge now. That is where EMS would look for it. Every time you are hospitalized the green sleeve goes with you. Comforting.
We see Dr. Bahlis on Tues (18) at which time we may have a new transplant schedule?
We are both very tired as this is draining emotionally. I can only handle so much adrenalin. However we do have peace about everything that happened. Everything that happens to us---good or bad passes through God's hand. He must be allowing these things for a reason beyond our comprehension. Part of the BIG picture. So very thankful for the prayers of many people.
Isaiah 55:8&9 says: "My thoughts are nothing like your thoughts," says the Lord. "And my ways are far beyond anything you could imagine.For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.'................
Bob and I are choosing to believe that God has everything in His Hands and in His control.
I checked my phone before taking the garbage down to the garbage room and there weren't any messages. Upon my return there was a message from Bob saying that he was going to be discharged today. He had been told around discharge would be around 12:00pm but I wasn't to hurry!!! I wanted to hear all of this first hand so I hurried. I was at he hospital by 10:00. Then we played waiting. We were on our way home at 3:10pm. However we spoke to a number of professionals over that time.
Bob does have pneumonia. The stem cell transplant doctor and the team are thinking that the steroids had masked it. When the chemo drugs were stopped, well no more masking!!!! Bob says the prednizone also masked pain as he has a lot more bone pain now. Bob needs to be more healthy as we were told any pre infection would be ----like almost deadly. Bob hasn't had a fever for 24 hours. We came home with a round of antibiotics, no chemo,metforman and a couple of others. Bob stayed wired, the CVC line can apparently stay in for a year???? My only concern was when the nurse gave me a package containing emergency supplies if anything happened to any part of the CVC line. We also got the official rain shield for shower time. Uggggggg.
We needed to talk with the social worker before we could leave. We shared with her about our belief in Jesus and even tho she can't say anything she said enough for us to think she is a believer. Her name is Lori and she introduced us to the green sleeve. Every one in AB needs to have a green sleeve!!!! We wear very little green so we obviously don't have one. Bob had been asked to bring in his will. CREEPERS, but what is needed is the personal directive. Today Lori explained what they want and need. Our wills have our personal directives so we will copy the directive before Bob goes in again. Upon leaving tho, we were given our own green sleeve. It is on our fridge now. That is where EMS would look for it. Every time you are hospitalized the green sleeve goes with you. Comforting.
We see Dr. Bahlis on Tues (18) at which time we may have a new transplant schedule?
We are both very tired as this is draining emotionally. I can only handle so much adrenalin. However we do have peace about everything that happened. Everything that happens to us---good or bad passes through God's hand. He must be allowing these things for a reason beyond our comprehension. Part of the BIG picture. So very thankful for the prayers of many people.
Isaiah 55:8&9 says: "My thoughts are nothing like your thoughts," says the Lord. "And my ways are far beyond anything you could imagine.For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.'................
Bob and I are choosing to believe that God has everything in His Hands and in His control.
Tuesday, August 11, 2015
SIDE-LINED
Yesterday (Mon. 10) got off to a great start. Bob had the CVC (Central Venous Catheter) line put in and was up on ward 57 Special Services building by 10:30. We met a couple who are going through the same procedure but with the wife as the patient. She also has another illness that puts her at risk but is also treated with stem cell transplant. It is really heart wrenching to see so many sick people with cancer. The ward however seems very positive. These nurses are sooooo young and are just running. However, once a nurse comes into the room you have her full attention and all the time you need.
Over the weekend Bob had the shivers, sweats, and a fever. It was in a sort of pattern and lasted approx. 2hrs. We, in our wisdom, thought he was having a withdrawal from all the meds. This same thing happened over noon hour on the ward. This put everyone into a tail spin as any kind of infection leading to fever does not go with stem cell transplant. Bob had blood taken, blood culture, urine culture and urine samples, a chest x-ray and an extremely thorough going over by the transplant doctor. The chest x-ray showed something on one lung that wasn't there at last x-ray, a week ago. The doctor thought it could be the bandages that were covering the line. They will x-ray in a couple more days to check that out. However at this point it is just to risky to do the transplant so it has been set back and has no new timeline. We are grateful this all happened before transplant. If it had happened post transplant it could have been blamed on the transplant and then who knows the results? as it may be treated differently.
I thought that was enough drama for one day but we weren't done yet. Once the decision was made to treat this as a bacterial infection, for now, Bob was hooked up with the antibiotics through one of those three ports on his chest. Way better than being poked. Bob decided to walk around the room with the pole--not really pole dancing at this point. It is a double room with only one bed so a fair bit of room. We hadn't been told whether Bob could leave the room yet and as you know me I am a rule follower. Bob turned and the front of his shirt was wet and I know he hadn't had the tap on. We started to look and the port fell out of the line to his chest. I ran to find a nurse. Bob clamped the line---not even sure how. We praise God that He gave Bob that nudge of protection. When a nurse and I came into the room there were splatters of blood all around Bob. She checked the line and called for help. I, in my wifely duty, wet towels and cleaned the mess. Starting with the blood on Bob's chest then down to the floor. Bob and both nurses had to put masks on and I sat in a far corner hiding from the whole scene and asking God to protect Bob. The nurse asked who had clamped the line. Bob said he did and she replied good thinking. As I look at it now I am convinced God's angels took Bob's hand and put it in the right spot. Once everything was back to "normal" we were told that a workplace file was being processed as that should never have happened. If there is fault to be laid it is in the radiology dept that put the line in and one of the ends was not proper. This line ends by the heart so should an air bubble have gone through Bob would have died. That is my understanding. Once again we thank God for His protection. Bob could have been sent home with a faulty line or gone into chemo or?????????
We don't understand all of this, don't know what will happen tomorrow, but once again I will say PTL we know Who knows tomorrow.
I was encouraged this morning by: Col. 1:11 "We also pray that you will be strengthened with all his glorious power so you will have the endurance and patience you need. May you be filled with joy, always thanking the Father." well actually, all of 1st Colossians.
Thank you for your prayers on our behalf.
Over the weekend Bob had the shivers, sweats, and a fever. It was in a sort of pattern and lasted approx. 2hrs. We, in our wisdom, thought he was having a withdrawal from all the meds. This same thing happened over noon hour on the ward. This put everyone into a tail spin as any kind of infection leading to fever does not go with stem cell transplant. Bob had blood taken, blood culture, urine culture and urine samples, a chest x-ray and an extremely thorough going over by the transplant doctor. The chest x-ray showed something on one lung that wasn't there at last x-ray, a week ago. The doctor thought it could be the bandages that were covering the line. They will x-ray in a couple more days to check that out. However at this point it is just to risky to do the transplant so it has been set back and has no new timeline. We are grateful this all happened before transplant. If it had happened post transplant it could have been blamed on the transplant and then who knows the results? as it may be treated differently.
I thought that was enough drama for one day but we weren't done yet. Once the decision was made to treat this as a bacterial infection, for now, Bob was hooked up with the antibiotics through one of those three ports on his chest. Way better than being poked. Bob decided to walk around the room with the pole--not really pole dancing at this point. It is a double room with only one bed so a fair bit of room. We hadn't been told whether Bob could leave the room yet and as you know me I am a rule follower. Bob turned and the front of his shirt was wet and I know he hadn't had the tap on. We started to look and the port fell out of the line to his chest. I ran to find a nurse. Bob clamped the line---not even sure how. We praise God that He gave Bob that nudge of protection. When a nurse and I came into the room there were splatters of blood all around Bob. She checked the line and called for help. I, in my wifely duty, wet towels and cleaned the mess. Starting with the blood on Bob's chest then down to the floor. Bob and both nurses had to put masks on and I sat in a far corner hiding from the whole scene and asking God to protect Bob. The nurse asked who had clamped the line. Bob said he did and she replied good thinking. As I look at it now I am convinced God's angels took Bob's hand and put it in the right spot. Once everything was back to "normal" we were told that a workplace file was being processed as that should never have happened. If there is fault to be laid it is in the radiology dept that put the line in and one of the ends was not proper. This line ends by the heart so should an air bubble have gone through Bob would have died. That is my understanding. Once again we thank God for His protection. Bob could have been sent home with a faulty line or gone into chemo or?????????
We don't understand all of this, don't know what will happen tomorrow, but once again I will say PTL we know Who knows tomorrow.
I was encouraged this morning by: Col. 1:11 "We also pray that you will be strengthened with all his glorious power so you will have the endurance and patience you need. May you be filled with joy, always thanking the Father." well actually, all of 1st Colossians.
Thank you for your prayers on our behalf.
Sunday, August 9, 2015
TIME
I was invited to join Bob and his co-workers for a luncheon. This luncheon was to honour Bob and wish him a speedy return to work. The work that this crew went to putting the lunch together was amazing. Lots of good food and a special time to greet those I knew and meet new staff. The contractors who were on sight came down for lunch as well. I was so touched by how highly all of these folks think of my Bob. Their kind words will be a salve for both of us for many months. The staff each brought a gift for Bob, to help pass the time over the next 3 months. Bob will become a champion at sudoku,wordfind, crossword puzzles. He will be encouraged by words of John Ortberg. He has a new devotional to read each day. A magazine entitled Get Rich at Home. Bob has new music to purchase on line as well as a card for online books. The model plane will be fun for Bob to put together. There are also 413 Motivation Stickers!!!!! "Good Job, Well done Etc." I can use them for ? --lots of pee, good eating, finally a solid poop!!! who knows as we aren't sure of what will need motivating. ;-}. The Landscape crew bought Bob a BIG eagle which is totally touching. On his desk Bob has Isaiah 40:31 which pointed them into the eagle direction. All of this covered in a warm fuzzy blanket to keep him warm. How blessed Bob is to have each one of these folks in his life. Which in turn means I am blessed too. ;-)
Bob's brother Gerry and Gerry's wife Claire took a few days away from their jobs to make a trip out west. They camped in Okotoks for 2 nights. On the second night (Fri) our family was able to all be out there for a neat evening around the fire. Mike and Cori and their 4 kids along with Tim and Barbie and all 4 of their kids made the effort to be out and spend time with us and G&C. Way to many marshmallows roasted and consumed!!!! Barbie and 2 of her kids spent the night out there in a tent. Kuddos to them. However when we arrived to go for breakfast with Gerry and Claire, Gerry had already helped them pack up and the kids were gone. I'm thinking that morning comes early when you are camping!!!!!
On Saturday Mike and Cori and kids spent the afternoon with us. We spent some time in the park but way to many wasps for a picnic so we finished eating in the condo. Lots of playing with the 3 little ones.
Hated the fact that Sunday arrived as that meant the weekend was almost over and reality was going to kick in. Our families came to church with us and then we headed to Tim and Barbie's for a bar -b -que lunch. Mike prayed for his dad, which means a lot to us. It really was a great visit. THE highlight had to be the water balloon fight. Once the little guys caught on it was crazy, they loved getting Uncle Mike, Hannah and Colton soaked.
Homeward we came to pack and get ready for tomorrow. Bob shaved his beard off. He thought if he just let it fall out he would end up eating a lot of it!!!!!! We are as ready as we can be. We don't know what tomorrow holds or any days in the future but we are so grateful that God knows the future and will see both of us through. So I am thinking that we obeyed the doctor's orders and had a great weekend.
Thank you for praying.
Bob's brother Gerry and Gerry's wife Claire took a few days away from their jobs to make a trip out west. They camped in Okotoks for 2 nights. On the second night (Fri) our family was able to all be out there for a neat evening around the fire. Mike and Cori and their 4 kids along with Tim and Barbie and all 4 of their kids made the effort to be out and spend time with us and G&C. Way to many marshmallows roasted and consumed!!!! Barbie and 2 of her kids spent the night out there in a tent. Kuddos to them. However when we arrived to go for breakfast with Gerry and Claire, Gerry had already helped them pack up and the kids were gone. I'm thinking that morning comes early when you are camping!!!!!
On Saturday Mike and Cori and kids spent the afternoon with us. We spent some time in the park but way to many wasps for a picnic so we finished eating in the condo. Lots of playing with the 3 little ones.
Hated the fact that Sunday arrived as that meant the weekend was almost over and reality was going to kick in. Our families came to church with us and then we headed to Tim and Barbie's for a bar -b -que lunch. Mike prayed for his dad, which means a lot to us. It really was a great visit. THE highlight had to be the water balloon fight. Once the little guys caught on it was crazy, they loved getting Uncle Mike, Hannah and Colton soaked.
Homeward we came to pack and get ready for tomorrow. Bob shaved his beard off. He thought if he just let it fall out he would end up eating a lot of it!!!!!! We are as ready as we can be. We don't know what tomorrow holds or any days in the future but we are so grateful that God knows the future and will see both of us through. So I am thinking that we obeyed the doctor's orders and had a great weekend.
Thank you for praying.
Saturday, August 8, 2015
Always Evolving-------REBOOT
One quote that Bob really likes from the Red Green Show is "I am a man, I can change".
These trips to Tom Baker and all the interactions with the various professionals give one pause to change. We had decided that Bob would stay in the hospital and not take passes. OF COURSE we did not really understand what a pass meant. Truth be told that, as of this hour, we are still not sure. Our thinking has evolved though, to accept that perhaps we will try out this "pass thing". We have been encouraged to try it when one is offered. Bob will only get them if everything is in order, as far as blood work, temp etc. They may be for only 2hours or 4 hours or maybe overnight. This encouragement came from 3 very different people. The one gal was with her mom and they were on a 4 hour pass. They were not leaving the hospital grounds but were "free" for 4 hours. The patient had her mask on her face, a cap on her bald head and off they went. She was so encouraging to Bob---well to both of us that we decided that maybe there was something to this pass thing. I believe that it has a lot to do with the mental health of patient and caregiver.
Bob's stem cells were collected in 2009 and we were informed that now a days the cells are stored very differently. Change/evolution of cell collection!------Bob's cells are in smaller bags so he has 5 bags to be given back. Each bag has a preservative in it. This preservative has it's own unique side affect. The new way of collecting cells has the cells in larger bags THEREFORE the patient receives less preservative. So Bob's return of cells will take longer than normal. On Wed. he will receive 2 bags in the morning and 2,perhaps 3 bags in the late afternoon.. Should he be only given 2 bags on Wed afternoon the last bag or #5 will be given Thurs morning.
We think that Bob is having withdrawal. Bob has only been off of the chemo drugs a few days but after 7 years..................????Hard for us to know but he is not feeling well and had the shakes for a while. This was not mentioned............suppose each person is different.
"Strength is not always revealed in a dramatic display: at times, it's demonstrated in determined endurance." C. Stanley
Wednesday, August 5, 2015
FORWARD
Well, it is going ahead for Bob's the stem cell transplant. As this whole situation becomes more real we also begin to understand more of the risks. We also know that this is what needs to be done. We could have postponed the procedure until the protein numbers went higher but we chose to continue now.
Bob had a bone marrow aspiration yesterday. This procedure is hard to watch but Bob doesn't even twitch. He says that it really doesn't bother him. Glad Bob is tough and seems to handle all the physical miseries well. One more round of blood work on Friday and a visit with the pharmacist.
Bob will receive the first of 3 velcade injections (also a chemo drug) on Fri. (7th). He is now off of all the former chemo drugs--today being the first day. Not sure how that will mess him up. Without the prednizone Bob should not be diabetic but he is watching the sugars closely to see what happens. The cumadin (warfarin) is also stopped however they are bridging with Tinzaparin injections (self administered).
Dr. Bahlis also showed concern about the damage to the heart. We already knew this but when push comes to shove -----yikes. The Dr. is going to administer a lower dose of the BIG chemo Melphalan. As Bob's marker numbers are going up they are still not what is considered high-----all in the perception!!!!!! Dr. Bahlis thinks the lower dose will be safer on Bob's heart and will still manage the myeloma.
The stem cells were harvested from Bob in 2009. He was on the new drug Revlamid at that time. We are asking God for a miracle of using these cells to heal Bob totally from the cancer. God could heal however He chooses. We are totally aware of that Truth but thus far He, has cared for my husband through the use of medicine and the knowledge of the doctors. Pray with us, that the cancer will be gone.
The TBCC is big on their stem cell patients going home for the first seven days or so, until the white blood counts are zero and the immunity is gone. Manitoba does not do this. Their patients are admitted and stay until the counts are on the way up about 14 days after day 0, or in Bob's case the 12th of Aug will be day 0. With all of the things to be aware of we are leaning to the MB protocal which is acceptable at Tom Baker. If Bob leaves on a pass he would need to be back by 9:00 am and it could be that he couldn't leave until late in the afternoon. The travelling distance for us is long and dealing with the body fluid discharge may not be the best for either of us. Pray with us as we will make these decisions daily with how Bob feels. I also do not need to be anxious about all the "what to do if...." Bob is good with staying. He was in hospital 2 months last time. He says he can handle 2-3 weeks. The latest electronic gadgets mean Bob is able to see his family----all of them, daily.
Psalm 33:22 says "May your unfailing love rest upon us, O Lord, even as we put our hope in you."
Bob had a bone marrow aspiration yesterday. This procedure is hard to watch but Bob doesn't even twitch. He says that it really doesn't bother him. Glad Bob is tough and seems to handle all the physical miseries well. One more round of blood work on Friday and a visit with the pharmacist.
Bob will receive the first of 3 velcade injections (also a chemo drug) on Fri. (7th). He is now off of all the former chemo drugs--today being the first day. Not sure how that will mess him up. Without the prednizone Bob should not be diabetic but he is watching the sugars closely to see what happens. The cumadin (warfarin) is also stopped however they are bridging with Tinzaparin injections (self administered).
Dr. Bahlis also showed concern about the damage to the heart. We already knew this but when push comes to shove -----yikes. The Dr. is going to administer a lower dose of the BIG chemo Melphalan. As Bob's marker numbers are going up they are still not what is considered high-----all in the perception!!!!!! Dr. Bahlis thinks the lower dose will be safer on Bob's heart and will still manage the myeloma.
The stem cells were harvested from Bob in 2009. He was on the new drug Revlamid at that time. We are asking God for a miracle of using these cells to heal Bob totally from the cancer. God could heal however He chooses. We are totally aware of that Truth but thus far He, has cared for my husband through the use of medicine and the knowledge of the doctors. Pray with us, that the cancer will be gone.
The TBCC is big on their stem cell patients going home for the first seven days or so, until the white blood counts are zero and the immunity is gone. Manitoba does not do this. Their patients are admitted and stay until the counts are on the way up about 14 days after day 0, or in Bob's case the 12th of Aug will be day 0. With all of the things to be aware of we are leaning to the MB protocal which is acceptable at Tom Baker. If Bob leaves on a pass he would need to be back by 9:00 am and it could be that he couldn't leave until late in the afternoon. The travelling distance for us is long and dealing with the body fluid discharge may not be the best for either of us. Pray with us as we will make these decisions daily with how Bob feels. I also do not need to be anxious about all the "what to do if...." Bob is good with staying. He was in hospital 2 months last time. He says he can handle 2-3 weeks. The latest electronic gadgets mean Bob is able to see his family----all of them, daily.
Psalm 33:22 says "May your unfailing love rest upon us, O Lord, even as we put our hope in you."
Wednesday, July 29, 2015
The Evolving of Care and Procedures
Yesterday, July 28, I think that I came close to walking my 10,000 steps. My fitbit tracks these things, alas that device didn't come with me yesterday but I am sure that 10,000 steps would have shown up.
Bob and I spent 7 hours walking the halls of the Tom Baker Cancer Centre with an odd foray into the main hospital. Yesterday was the longest day of blood testing and x-raying that Bob will have prior to the stem cell transplant. We were starting to think that if he survived the day, Bob would be healthy enough to have the transplant. What we found most interesting was how much the approach to this work-up has changed since we walked this route years back. It could be us and our better understanding of things cancer. We came home feeling much better about the process. It is still going to be a tough go for Bob but many of the details became so much more clear.
The dentist visit was so good. An oncologist dentist and what a super guy he is. Bob has now become his patient for at least 6 mo. for anything at all related to the mouth. Dr. Ricky explained all about the mucositis---how painful it will be and how to care for the sores. We must be the only people that didn't know dry mouth means--no saliva!!! We were educated about all of that. Any sign of thrush we get in to see the dentist. Feeling very cared for. The biggest killer is infection and often that begins in the mouth. The last time Bob prepped for the transplant the dentist pulled 2 teeth and said he was ready to go.
When the chemo is being given it has been said that Bob will be given ice chips or shaved ice to help in the mouth. Yesterday we bought one of those sno-cone type machines that shaves ice. Bob is going to work at conditioning his mouth and body to the cold so he can do it well when he is in the hospital. I am going to sprinkle grape juice on my sno cone. ;-} . Once this is all over the grandkids can have it ........
We also saw a psychologist in the Dept. of Psychosocial resources. Dr. Tsai was also a wonderful lady to talk with. She could be a friend. She will go up and see Bob when he is in hospital. She will be available to me/we anytime we need to talk. We got to share our faith in Jesus with her and how we believed in prayer. To her, our faith is a positive in our lives that helps deal with stress. She is ok with it. (The word of the Lord does not return void). Lovely, lovely lady. The last time we were in this dept. we were taught breathing techniques for relaxing.
Bob thinks he "passed" the heart and breathing part of the prep.
This is the point that the first transplant attempt was stopped. The road of drugs then began.
Bob still has 3 big days. Sat. is the CTscan but we don't think that would stop the process. We have 2 big days next week on Tues and Fri. they are meetings with the doctors, pharmacist, teaching, and touring. We will know on Tues if Dr. Bahlis will go ahead with the transplant. On Fri. Bob will receive velcade infusion, more bloodwork and wait for the Transplant Journey beginning Aug. 10.
It is kinda, sorta ironic that it was Aug. long weekend 7 years ago that Bob had the back surgery fusing T5andT6 together where a tumor had broken his back.
Bob and I spent 7 hours walking the halls of the Tom Baker Cancer Centre with an odd foray into the main hospital. Yesterday was the longest day of blood testing and x-raying that Bob will have prior to the stem cell transplant. We were starting to think that if he survived the day, Bob would be healthy enough to have the transplant. What we found most interesting was how much the approach to this work-up has changed since we walked this route years back. It could be us and our better understanding of things cancer. We came home feeling much better about the process. It is still going to be a tough go for Bob but many of the details became so much more clear.
The dentist visit was so good. An oncologist dentist and what a super guy he is. Bob has now become his patient for at least 6 mo. for anything at all related to the mouth. Dr. Ricky explained all about the mucositis---how painful it will be and how to care for the sores. We must be the only people that didn't know dry mouth means--no saliva!!! We were educated about all of that. Any sign of thrush we get in to see the dentist. Feeling very cared for. The biggest killer is infection and often that begins in the mouth. The last time Bob prepped for the transplant the dentist pulled 2 teeth and said he was ready to go.
When the chemo is being given it has been said that Bob will be given ice chips or shaved ice to help in the mouth. Yesterday we bought one of those sno-cone type machines that shaves ice. Bob is going to work at conditioning his mouth and body to the cold so he can do it well when he is in the hospital. I am going to sprinkle grape juice on my sno cone. ;-} . Once this is all over the grandkids can have it ........
We also saw a psychologist in the Dept. of Psychosocial resources. Dr. Tsai was also a wonderful lady to talk with. She could be a friend. She will go up and see Bob when he is in hospital. She will be available to me/we anytime we need to talk. We got to share our faith in Jesus with her and how we believed in prayer. To her, our faith is a positive in our lives that helps deal with stress. She is ok with it. (The word of the Lord does not return void). Lovely, lovely lady. The last time we were in this dept. we were taught breathing techniques for relaxing.
Bob thinks he "passed" the heart and breathing part of the prep.
This is the point that the first transplant attempt was stopped. The road of drugs then began.
Bob still has 3 big days. Sat. is the CTscan but we don't think that would stop the process. We have 2 big days next week on Tues and Fri. they are meetings with the doctors, pharmacist, teaching, and touring. We will know on Tues if Dr. Bahlis will go ahead with the transplant. On Fri. Bob will receive velcade infusion, more bloodwork and wait for the Transplant Journey beginning Aug. 10.
It is kinda, sorta ironic that it was Aug. long weekend 7 years ago that Bob had the back surgery fusing T5andT6 together where a tumor had broken his back.
Please pray for clear direction for Dr. Bahlis, the continuing great care, that Bob will not be as sick as it seems folks are, that I will have the strength of the Lord to do all the driving, hospital time and care at home.
Tuesday, July 14, 2015
Evolution/Evolving/Changing????
What is evolution?
This question may conjure up many things in my mind. Did humans come from monkeys??? I don't believe so but the word evolution brings that thought first to my mind.
This past weekend Bob and I were fortunate to celebrate our 45th wedding anniversary. I know, it hardly seems possible that two youngsters could be married that long. It was a delightful celebration. We drove to Spokane for the weekend. Not to long ago we could be heard saying "no, for any holidays we won't be leaving Canada. What if Bob needed medical attention?" So here we are in Spokane with no idea of what is in the city or how we will spend our time. We did have a place to sleep, booked tho!!!!! Spokane turned out to be fun. We are a bit of history buffs so we had our anniversary dinner in a renovated steam plant. The restaurant is called The Stack. It is also home to a micro brewery, pub and a number of offices. The way this was done leaves much of the steam"stuff" in place and the booths and tables etc are filled in around pipes and dials etc. We were able to walk around most of the whole building reading the plaques that explain the history. There is three stories of cat walks so we could go pretty much right to the top of the building. The food was great and the beer? while the flavor I choose will not become a favorite.
On the first day of married life together we ate in a pancake house. Sooooooo... Bob found a pancake house for us to have breakfast at called:........Frank's Diner!! Bob told me that the reviews were really great so off we went. Well, this diner is a renovated train car. The plaques once again explained the history of the car. There was a fairly long counter, some two people booths, and three, six people booths. The wait was about half an hour for us but some folks were going to wait almost an hour----we were early!!!! Great food, great service and very cool surroundings.
We did not know that Spokane is the smallest city to host an EXPO. The Expo 1974 was held in Spokane. There is a one hundred acre park in the centre of the city where the fair was held. This park has been left as a legacy to the city. We took the "little train" ride around the park. The tour guide explained all of the various parts of the park. Canada"s pavilion was on an island. We left them a totem pole!!!! It was most interesting and some very beautiful buildings remain.
A gondola (redone and made longer) took us out over the river and the hydro dam that the city uses for power. The gondola was also given by a country,( the name of which I cannot remember), to Spokane (not the new gondaolas!!!).
I will get to evolution, patience, my dear.!!!!!!!!
Then I rode on the carousel that was left by Germany for the city. This was part of the German pavilion and I think the beer gardens------41 years ago!!! It is a beautiful, carousel, well kept and goes fairly fast for a grandma.
We also walked through a three story Nordstom store just to say we did!!!!!!!!!!
More heritage sites were part of the days events but I don't want to be a bore. ;-}
We talked about a large number of things over the weekend but a lot about how our lives have evolved. We talked about how we have evolved as individuals from those two young people who got married to who we are today and how we interact together. The dictionary says that evolution is: a process of slow change and development. I believe that!!!!
For Bob and I this evolution played out on the trip home. We have GPS, his name is Mordecai. Mordecai showed the way out of the city of Spokane and theeeeeen we turned him off as now, we knew the way. "Of course the terrain looks different, we are going the other way. Oh yeah we didn't see Silverwood, that was on the other side of the highway, it was raining when we came...of course it looks different, I don't believe we drove through all this construction, must have, uh oh we aren't suppose to be in MONTANA. Where are we??? Turn Mordecai on and he can only say: turn around, turn around-----not helping Mordecai." So we were as calm as can be and thought we have gone to far to turn around on the Interstate 90. We landed in St. Regis, Montana. Mordecai was asking us to take a very similar route back, only through some serious looking mountains on roads less travelled. The lovely lady at the gift shop provided us with a free paper map (I know, I know who uses paper maps?) We voted against Mordecai and also chose not to go into Glacier Park but north to Kallispell and Whitefish all the way north to Hwy 3 (in Canada) and the ice cream stop. It was a long journey, instead of getting home around 3:00 we got home at 10:00pm. Our evolution is that this became fun and an adventure, not an anxious wife or a husband who was ticked off.................evolution. We also learned that the Flathead Lake area has a micro climate that grows cherries!!!!
Evolution also occurs as I learn from the many life situations Bob and I have walked through and walked alongside other folks in their journeys. I have learned to trust the Lord, truly believing that everything passes through His Hand before an event happens to me or those I love. My relationship with God is a very personal, intimate one. I know that Bob's relationship is also very intimate. The Lord is only interested in who we are as people, as followers of Jesus. It becomes important then, how we react to life, how and who we trust with life situations. Bob and I are choosing that our desire is to bring honor to the name of Jesus and to trust Him in this cancer walk we are on. We do not want to be bitter, angry, ungrateful or try to lay blame. We are grateful for the years that have already been added to Bob's life. We are so thankful for the employment, benefits and the people in the company that Bob works for. We are thankful for God's leading when I made the decision to leave my job at the preschool. I wasn't totally sold on any one reason but knew leaving was what I needed to do.
Evolution also came to our thinking about one of the first line procedures in treating multiple myeloma cancer. That would be stem cell transplant. We heard about it and prepared for it early on in this journey. Bob was disqualified for the reason of a heart attack which we believe he suffered during the time he was in immense back pain, prior to the back surgery. Over time we decided that this procedure was just to horrible for Bob to undergo. Bob had the regime of the first line drugs and lived with the side affects. The first line drugs have now run out and Bob's numbers are once again on the up swing. The stem cells have already been harvested. As we listened to Dr. Bahlis and Dr. Neri's presentation this time, we understood everything much better, some things they have changed to hopefully make the transplant more acceptable physically. Bob's age is also on the up swing. Right now Bob is in reasonably good health and the transplant is the BEST option. It will give him at least a couple more years and in the mean time there are more drugs in the development stage. One of these drugs is noted on FB today from a friend of ours--Gloria---who also is battling multiple myeloma. I shared that write up on my FB page. I copied, below, some of what is written. This is the type of research that gives hope. God in His mercy gives these doctors and researchers more and more glimpses into the amazing bodies He created.
In the one-year study, UCLA researchers analyzed the effects of an experimental drug called compound 11 in myeloma cell lines. They combined it with another drug, bortezomib (Velcade), which was approved by the U.S. Food & Drug Administration in 2008 for use in the treatment for lymphoma. Results showed that the drugs working in tandem targeted a specific protein to stop cancer cells in the bone marrow from replicating, and eventually causing them to die.
“Compound 11 will prevent the transmission of the Myc RNA into Myc protein, and prevent the Myc protein from being synthesized in the multiple myeloma cells when those cell lines are being stressed by the drug bortezomib,” said Lichtenstein, a UCLA professor of hematology and oncology. “Though this research is only in the preliminary phases, we hope that it will eventually lead to human clinical trials and the development of new treatments for this devastating disease.”
We really needed to get back from Montana as the appointment with Dr. Bahlis was this morning!!!! Our special weekend away included lots of talking about this option and praying that the Lord will lead each step.
Sooo in our evolution of thinking, the process of Bob having a stem cell transplant has begun. Bob will need to pass all of the tests that will take place in the next weeks. Plans need to be made tho, so Bob will finish work on Aug.7 and start on short term disability and then if needed long term disability down the road. The central venous catheter will be put in on Aug.10. The large dose chemo (melphalan) will be given on the 11th, Bob will also receive 2 doses of velcade. Blood cells transplanted on the 12th. He will be able to come home until his blood counts disappear and then will be in the hospital, pretty much in isolation. This will also be his sickest time. Potentially he could come home by the end of the month depending on the recovery of the blood counts. Until Dec. Bob will be avoiding germs and resting. Infections of any type are the biggest worry. We are not sure what this will look like but Bob is thrilled he will not need to go to a mall or do any Christmas shopping. At first for sure, no germs from other people or other homes. We will be travelling once for sure but perhaps 2x a week to Tom Baker during this time. Fresh flowers, fruit baskets are not allowed in the hospital for sure. They suggest cards, pictures and non latex balloons.
Please add Bob and me too! to your prayers. We will see Dr. Bahlis on Aug. 4 at which time we will know for sure if all of this evolution-----of planning----- will take place.
This question may conjure up many things in my mind. Did humans come from monkeys??? I don't believe so but the word evolution brings that thought first to my mind.
This past weekend Bob and I were fortunate to celebrate our 45th wedding anniversary. I know, it hardly seems possible that two youngsters could be married that long. It was a delightful celebration. We drove to Spokane for the weekend. Not to long ago we could be heard saying "no, for any holidays we won't be leaving Canada. What if Bob needed medical attention?" So here we are in Spokane with no idea of what is in the city or how we will spend our time. We did have a place to sleep, booked tho!!!!! Spokane turned out to be fun. We are a bit of history buffs so we had our anniversary dinner in a renovated steam plant. The restaurant is called The Stack. It is also home to a micro brewery, pub and a number of offices. The way this was done leaves much of the steam"stuff" in place and the booths and tables etc are filled in around pipes and dials etc. We were able to walk around most of the whole building reading the plaques that explain the history. There is three stories of cat walks so we could go pretty much right to the top of the building. The food was great and the beer? while the flavor I choose will not become a favorite.
On the first day of married life together we ate in a pancake house. Sooooooo... Bob found a pancake house for us to have breakfast at called:........Frank's Diner!! Bob told me that the reviews were really great so off we went. Well, this diner is a renovated train car. The plaques once again explained the history of the car. There was a fairly long counter, some two people booths, and three, six people booths. The wait was about half an hour for us but some folks were going to wait almost an hour----we were early!!!! Great food, great service and very cool surroundings.
We did not know that Spokane is the smallest city to host an EXPO. The Expo 1974 was held in Spokane. There is a one hundred acre park in the centre of the city where the fair was held. This park has been left as a legacy to the city. We took the "little train" ride around the park. The tour guide explained all of the various parts of the park. Canada"s pavilion was on an island. We left them a totem pole!!!! It was most interesting and some very beautiful buildings remain.
A gondola (redone and made longer) took us out over the river and the hydro dam that the city uses for power. The gondola was also given by a country,( the name of which I cannot remember), to Spokane (not the new gondaolas!!!).
I will get to evolution, patience, my dear.!!!!!!!!
Then I rode on the carousel that was left by Germany for the city. This was part of the German pavilion and I think the beer gardens------41 years ago!!! It is a beautiful, carousel, well kept and goes fairly fast for a grandma.
We also walked through a three story Nordstom store just to say we did!!!!!!!!!!
More heritage sites were part of the days events but I don't want to be a bore. ;-}
We talked about a large number of things over the weekend but a lot about how our lives have evolved. We talked about how we have evolved as individuals from those two young people who got married to who we are today and how we interact together. The dictionary says that evolution is: a process of slow change and development. I believe that!!!!
For Bob and I this evolution played out on the trip home. We have GPS, his name is Mordecai. Mordecai showed the way out of the city of Spokane and theeeeeen we turned him off as now, we knew the way. "Of course the terrain looks different, we are going the other way. Oh yeah we didn't see Silverwood, that was on the other side of the highway, it was raining when we came...of course it looks different, I don't believe we drove through all this construction, must have, uh oh we aren't suppose to be in MONTANA. Where are we??? Turn Mordecai on and he can only say: turn around, turn around-----not helping Mordecai." So we were as calm as can be and thought we have gone to far to turn around on the Interstate 90. We landed in St. Regis, Montana. Mordecai was asking us to take a very similar route back, only through some serious looking mountains on roads less travelled. The lovely lady at the gift shop provided us with a free paper map (I know, I know who uses paper maps?) We voted against Mordecai and also chose not to go into Glacier Park but north to Kallispell and Whitefish all the way north to Hwy 3 (in Canada) and the ice cream stop. It was a long journey, instead of getting home around 3:00 we got home at 10:00pm. Our evolution is that this became fun and an adventure, not an anxious wife or a husband who was ticked off.................evolution. We also learned that the Flathead Lake area has a micro climate that grows cherries!!!!
Evolution also occurs as I learn from the many life situations Bob and I have walked through and walked alongside other folks in their journeys. I have learned to trust the Lord, truly believing that everything passes through His Hand before an event happens to me or those I love. My relationship with God is a very personal, intimate one. I know that Bob's relationship is also very intimate. The Lord is only interested in who we are as people, as followers of Jesus. It becomes important then, how we react to life, how and who we trust with life situations. Bob and I are choosing that our desire is to bring honor to the name of Jesus and to trust Him in this cancer walk we are on. We do not want to be bitter, angry, ungrateful or try to lay blame. We are grateful for the years that have already been added to Bob's life. We are so thankful for the employment, benefits and the people in the company that Bob works for. We are thankful for God's leading when I made the decision to leave my job at the preschool. I wasn't totally sold on any one reason but knew leaving was what I needed to do.
Evolution also came to our thinking about one of the first line procedures in treating multiple myeloma cancer. That would be stem cell transplant. We heard about it and prepared for it early on in this journey. Bob was disqualified for the reason of a heart attack which we believe he suffered during the time he was in immense back pain, prior to the back surgery. Over time we decided that this procedure was just to horrible for Bob to undergo. Bob had the regime of the first line drugs and lived with the side affects. The first line drugs have now run out and Bob's numbers are once again on the up swing. The stem cells have already been harvested. As we listened to Dr. Bahlis and Dr. Neri's presentation this time, we understood everything much better, some things they have changed to hopefully make the transplant more acceptable physically. Bob's age is also on the up swing. Right now Bob is in reasonably good health and the transplant is the BEST option. It will give him at least a couple more years and in the mean time there are more drugs in the development stage. One of these drugs is noted on FB today from a friend of ours--Gloria---who also is battling multiple myeloma. I shared that write up on my FB page. I copied, below, some of what is written. This is the type of research that gives hope. God in His mercy gives these doctors and researchers more and more glimpses into the amazing bodies He created.
In the one-year study, UCLA researchers analyzed the effects of an experimental drug called compound 11 in myeloma cell lines. They combined it with another drug, bortezomib (Velcade), which was approved by the U.S. Food & Drug Administration in 2008 for use in the treatment for lymphoma. Results showed that the drugs working in tandem targeted a specific protein to stop cancer cells in the bone marrow from replicating, and eventually causing them to die.
“Compound 11 will prevent the transmission of the Myc RNA into Myc protein, and prevent the Myc protein from being synthesized in the multiple myeloma cells when those cell lines are being stressed by the drug bortezomib,” said Lichtenstein, a UCLA professor of hematology and oncology. “Though this research is only in the preliminary phases, we hope that it will eventually lead to human clinical trials and the development of new treatments for this devastating disease.”
We really needed to get back from Montana as the appointment with Dr. Bahlis was this morning!!!! Our special weekend away included lots of talking about this option and praying that the Lord will lead each step.
Sooo in our evolution of thinking, the process of Bob having a stem cell transplant has begun. Bob will need to pass all of the tests that will take place in the next weeks. Plans need to be made tho, so Bob will finish work on Aug.7 and start on short term disability and then if needed long term disability down the road. The central venous catheter will be put in on Aug.10. The large dose chemo (melphalan) will be given on the 11th, Bob will also receive 2 doses of velcade. Blood cells transplanted on the 12th. He will be able to come home until his blood counts disappear and then will be in the hospital, pretty much in isolation. This will also be his sickest time. Potentially he could come home by the end of the month depending on the recovery of the blood counts. Until Dec. Bob will be avoiding germs and resting. Infections of any type are the biggest worry. We are not sure what this will look like but Bob is thrilled he will not need to go to a mall or do any Christmas shopping. At first for sure, no germs from other people or other homes. We will be travelling once for sure but perhaps 2x a week to Tom Baker during this time. Fresh flowers, fruit baskets are not allowed in the hospital for sure. They suggest cards, pictures and non latex balloons.
Please add Bob and me too! to your prayers. We will see Dr. Bahlis on Aug. 4 at which time we will know for sure if all of this evolution-----of planning----- will take place.
Sunday, February 1, 2015
Last day of January---Triage---
With all the news stories about the plummeting oil prices and the financial devastation that is befalling not only Alberta but all of Canada our trip to the South Calgary Health Campus last evening proved uplifting.
The promised new cancer care centre has been seemingly delayed again. This time due to the poor oil prices and the empty financial purse. Tom Baker Cancer Centre has been to capacity for many years already and since Bob and I have been regulars, past 6.5 years, it has gotten more and more congested. The hall ways have boxes of supplies stacked everywhere. People are sitting in every possible nook and cranny waiting to see doctors, social workers and the myriad of other professionals who work in cancer care. One time we may see our docs in an out patient clinic , the next time in day medicine and the next time down the hall , through the waiting room and into an area that at one time stored boxes of supplies. Yes, the facilities are crowded but staff is wonderful and they take time with you as needed. They only seem to be harried in between patients.
The people of Alberta and the disease of cancer are not going anywhere so build the facility already and when oil prices go up the government can take all the kuddos plus the kuddos for building a new cancer centre when the cost of construction is down.
Last evening we made the short trip to the new hospital which is only a few miles south of us. Bob has struggled with this horrible cold, or more of a cough for a month now. Around suppertime he couldn't get his breath. That was very scary, we got him calmed down and sitting. Bob could hear the crackling but we had to wait for 15 minutes until the baked pancake was baked. It was my Sunday to provide morning snack for the worship team and pastors as they are at church for all three services. However, I digress. We arrived at the hospital around 5:30pm and only waited maybe 10 min. to see the triage nurse. The hospital is new and big and did not feel the least bit crowded. Bob was given a bed right away. Him, being a senior, coughing, short of breath and with chest pain ...yeah right in.... on the machine lickety split. A young lady came in with another neat machine, She said it was to take a look at his heart. To me it looked like another machine that measured the heart rhythm.
Now we found our way to a "real room" in the emerg department. Bob was now more or less in quarantine. There was a steady line up of nurses in and out with blood sampling needles and vials of all different types, someone to hook up the vital signs stuff, heart monitoring equipment. The procedure to come in was to gown, mask, glove and the gloves up under the gown. I was beginning to feel very vulnerable. Lots and lots of questions ---where had we been, have we been on a plane, who else is sick. THEN a nurse came in all dressed plus had the clear visor on covering the whole face and mask. I said to Bob you either have Ebola or that chicken flu. Off to have a chest x-ray. Back again. Sheesh I didn't get time to sit and look at any reading material. Altho, at this hospital, there really isn't any reading material out and about. Any books or magazines handled by a patient is recycled not given to any one else to read. I had volunteered here for a while and stopping the flow of germs was highest on the list. I still wonder about the puzzles as a few of them belonged to the hospital but any playing cards etc were a patients. I was always a bit pleased I could say "sorry I don't play crib".
This time we had a nurse come in and give Bob lessons on how to use a Ventolin puffer. Bob's blood oxygen levels were not what they liked but were pretty much always in the 90s. Bob did two rounds of the Ventolin plus another drug through the puffer. Tat particular drug kills bacteria. This of course meant carefully rinsing the mouth so the good mouth bacteria didn't get killed. Bob did two rounds of this and thought that yes the breathing was improving. By now the results were all coming in from the blood samples and x-ray. At one point it was all I could do to keep my hands off of my phone camera. Two doctors and a nurse were standing in a row talking to Bob. They had matching yellow gowns, purple gloves all matching and the blue/white masks covering nose and mouth. The doctor in the centre wore a hijab that was also a two tone purple, along with a purple long sleeve shirt that I could see. Three sets of eyes going back and forth, they looked like three Easter chicks all set out to enjoy the Easter festivities!!!!!!! OK another aside-----there could be a place for a sewing entrepreneur to make hijabs for doctors and nurses. I see the need that these doctors have so their ears are free. The face masks generally hook around the ears, the stethoscope goes into the ear. I was thinking ..................like a big button hole that the ears could pop out of when needed. I could see that these actions were a little frustrating and took some finagling to get the ear free.
One of the emerg doctors put an antibiotic IV drip in for Bob. His thinking was that they didn't know what they were dealing with and so he went with antibiotics plus more prednizone. His idea was to keep Bob in hospital for a couple of days and monitor everything. The young pharmacist came in to go over ALL the drugs Bob is taking and could we bring in the pomalyst as she wouldn't be able to get that for a few days? She didn't even worry about her ears just held the mask up to her mouth. "Yes of course if Bob stays I will bring whatever you need."
Shift Change. From what I could tell only the doctors changed. "Our" nurse came in and talked about going home. The tests didn't show anything definitive and if the Ventolin helped would he like to go home? The cultures wouldn't be back for a couple of days and if they showed anything Bob would be called and back he would go to their department. First the nurse thought Bob should take a walk to see how he was breathing. Shoes on ready to go and the nurse sits down . "Oh You are still officially infectious, you need to walk in here. Ha Ha really down one side of the bed across the foot of the bed up the other side, turn around and away we go again. The hospitalist was called and boom before you could turn around he was standing in the door way introducing himself door and was off to read the chart. These guys loved Bob's chart because they of course could read all the stuff from Tom Baker, all of Dr. Bahlis' notes (which are apparently very good) and seemed to enjoy the complexity of who Bob is. Bob could not be admitted unless this hospitalist admitted him as the ER doctors don't have admitting power. Our hospitalist turned out to be a resident in internal medicine. A very young resident in internal medicine. He also checked Bob out very carefully and very fully. The nurses had talked with him "our' nurses. He came back in and visited for a while and decided that staying in the hospital may not be the very best option as there were some very sick people up stairs. All the options were left open for us to decide. We could return at any time by ambulance if necessary. So, no, he wouldn't admit Bob. A nurse came in to unhook Bob and said "good, glad you are going home". The new ER doctor that came in at shift change discharged Bob.
Naturally leaving didn't go smoothly. Somehow I got hand sanitizer on the parking ticket????? The machine couldn't read it even when I insisted on trying several times. This is a hospital, hand sanitizer happens. A phone call later and after paying, a new ticket was issued out of the parking machine. How does that happen??? Five hours almost to the ten minutes we were back home. Amazing, the best care with the greatest of attitudes, a myriad of tests. No waiting for anything or anyone. We were both tremendously blessed by the health care Bob received and has received over the past nine years. Praise God for His Hand of care through all the people we have come in contact with in the health care profession in Alberta.
Amen
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