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. :-)
Wednesday, October 28, 2015
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.
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