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??
Thursday, November 19, 2015
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.
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