2BR
Today's appointment with Dr. Sarriera was great. First, I had to get up at 6:15 because we had to leave the house at 8 AM for my 9 AM appointment. And this is Friday, my tired day. But I was ready and out the door at 8.
Abby came in first and talked with us. Reviewed all my questions and comments. Left and came back with Dr. Sarriera. He was very happy to tell me the MRI brain scan showed no change in the hazy area. Great news. We discussed my labs. All great. My M-spike is .1 this time. Very minute Myeloma that is not measurable. Again, great!! I will see him again in 4 weeks. At that time, we will schedule a Pet scan. This is to see the progress of my chemo on the Myeloma area by the spine that was biopsied back in May and to make sure nothing else has popped up since the last Pet Scan. With all the good news, I don't think we will see anything. I am ready for remission for the next 25 years.
My potassium has been up and down the last few visits. So it was decided to put me on a potassium pill permanently. At least for the time being. Also, I am to go back on Hydrochlorothiazide. This pill is used to treat high blood pressure by getting rid of extra fluid. My blood pressure has been higher than we like. Today it was 160/90 at the doctor's office. Two more pills added to what I already take. Ugh.
Bill and I got on the elevator to go to the first floor and go home. There was a several persons already in the elevator. One of them look at us and said "You two really look familiar." Bill said "We have been coming here for 2 years so we probably do." She asked if I had my port put in at the Cancer Center. Yes. She said she probably was my prep nurse for the procedure on floor 2BR. I then recognized her. We both remembered she was the one who took my 24 hour collection to the lab so I could be there earlier than scheduled. That was good for a laugh before she go off on floor 2. Can't remember her name but remember she was a good prep nurse.
Quote:
Someone said "I don't know how you do it." I said "I wasn't given a choice."
Friday, August 31, 2018
Monday, August 27, 2018
Benn
Darzalex and Dex on Tuesday and Kyprolis on Tuesday and Wednesday of last week. Thursday was an okay day. Friday was my I don't have any energy and very tired day. But I had to go to the Cancer Center Friday for my MRI brain scan. Appointment was at 3:30. Took an Ativan to help me through the MRI. It did. Plus, I slept from the time I got home until the next morning. Saturday was still a bit groggy.
Sunday was my big 69th birthday. Nice day. Decided to have some crab legs, shrimp and chili. Picked up mom. Matt, Sasha and Ellie came over to help celebrate. Kristi was visiting LJ. And Gery came over (Michelle with her grandkids) also. Thanks to Gery for the beautiful chocolate on chocolate cake. My favorite. Michelle said she baked it before she left. ;) Mom, Sasha and I ate and ate and ate crabs. So good. Not sure why but seafood is very expensive here. Not only was it my birthday but it was 3 years ago we settled on our home. And boy has a lot happened in those 3 years.
My MRI results were in my portal. This morning, Monday, I looked at them along with Bill. We thought they looked good but just needed Dr. Sarriera to agree. Sent an email to Desiree and she confirmed they were good. Nothing had changed. That along with my lab results, made for a happy day. So anxious for my visit with Dr. Sarriera on Friday to discuss some happy!!!!!Friday can't come fast enough.
Tomorrow, Tuesday August 28th, I get my infusion of Kyprolis along with Dex. And then again on Wednesday, August 29th, Kyprolis. Then done for the week except my Friday appointment. Will be a nicer week since I don't have the Darazlex.
Today I got notified there was a new blog post on my friend Benn. Was so happy to read that he is now in remission. Yeah for Benn. His wife writes " What does remission mean? While myeloma remission is not the same as other cancers, a myeloma patient is never cured - at least there is no known cure today. Benn has trace of myeloma present but the amount is so minimal it is nearly undetectable. For today, we take the remission win and declare victory over myeloma. "
Quote:
Hope is the bridge that connects cancer and recovery.
Darzalex and Dex on Tuesday and Kyprolis on Tuesday and Wednesday of last week. Thursday was an okay day. Friday was my I don't have any energy and very tired day. But I had to go to the Cancer Center Friday for my MRI brain scan. Appointment was at 3:30. Took an Ativan to help me through the MRI. It did. Plus, I slept from the time I got home until the next morning. Saturday was still a bit groggy.
Sunday was my big 69th birthday. Nice day. Decided to have some crab legs, shrimp and chili. Picked up mom. Matt, Sasha and Ellie came over to help celebrate. Kristi was visiting LJ. And Gery came over (Michelle with her grandkids) also. Thanks to Gery for the beautiful chocolate on chocolate cake. My favorite. Michelle said she baked it before she left. ;) Mom, Sasha and I ate and ate and ate crabs. So good. Not sure why but seafood is very expensive here. Not only was it my birthday but it was 3 years ago we settled on our home. And boy has a lot happened in those 3 years.
My MRI results were in my portal. This morning, Monday, I looked at them along with Bill. We thought they looked good but just needed Dr. Sarriera to agree. Sent an email to Desiree and she confirmed they were good. Nothing had changed. That along with my lab results, made for a happy day. So anxious for my visit with Dr. Sarriera on Friday to discuss some happy!!!!!Friday can't come fast enough.
Tomorrow, Tuesday August 28th, I get my infusion of Kyprolis along with Dex. And then again on Wednesday, August 29th, Kyprolis. Then done for the week except my Friday appointment. Will be a nicer week since I don't have the Darazlex.
Today I got notified there was a new blog post on my friend Benn. Was so happy to read that he is now in remission. Yeah for Benn. His wife writes " What does remission mean? While myeloma remission is not the same as other cancers, a myeloma patient is never cured - at least there is no known cure today. Benn has trace of myeloma present but the amount is so minimal it is nearly undetectable. For today, we take the remission win and declare victory over myeloma. "
Quote:
Hope is the bridge that connects cancer and recovery.
Tuesday, August 21, 2018
Shady.
12 days without chemo. Just my Tuesday Dex. 12 days of Bill not driving me to the Cancer Center. 12 days of not getting my port accessed and drawing blood. 12 days to relax some at home. 12 days like the 12 days of Christmas! Ha! Was able to visit with Mark and Irene. Finally get to see Mimi, Aaron, Skylar, Olivia and meet Gray. Was nice to hear the laughter of little kids. Got to see their new homes. My favorite room between the two homes was Mimi's sewing room. Lol! Now who would have guess that??? Beautiful homes both of them though. We also were able to get to the beach again. Beautiful day. Had dinner with Kristi and girls one night. Got mom for a day of manicures, pedicures, naps and dinner. 12 days!! Was able to get in to my sewing room and finish a project I have been working on. Oh, I felt the effects of coming down off of drugs but the 12 days of no drugs kept them at bay in my mind. Didn't want to ruin our 12 days.
And today. Tuesdays the 21st, started back my treatments. Darzalex, Kyprolis, Dex. We left the house at 7 this morning. Appointment time 8. Was taken back to the lab draw room by Ellen and Kristine (new today and Ellen was training her). Vitals done. Needles went in to port without a problem. Blood draw was excellent. Needed, along with CMP and CBC draws, the draws for Myeloma. Six tubes total. Have an appointment with Dr. Sarriera on the 31st. My MRI brain scan is this Friday the 24th. Dentist appointment on Thursday, the 23rd. Busy week for us.
Sent to room 20 with Emma being my oncology nurse for the day. Excellent, excellent nurse. Was on top of everything from the beginning. First asked Bill what happened to his leg before we got started on me. He was bitten by something on the back of his calf. Not a fire ant bite. Looks like when he got bite when we were in Tampa. Emma questioned him about it and told him if it gets bigger, he needed to see our family doctor. Been taking Benadryl. Using a hydrocortisone cream. Even used a piece of aloe vera (from the plant I brought from Kerri's). Will look at it in the morning to see if it's bigger. Emma wanted to draw dots around it to see if it gets bigger but Bill said no. I wanted to put at least a few dots around it before he went to bed but no to that also. Will be checking it in the morning again.
Labs coming back. Saw them in my portal. Bill and I took bets on what my bilirubin and platelet count was going to be. Was ready to let Emma know they were back but here she comes with her cart. Bill tried to bet with her on my counts but that didn't work. Oh, my platelets were 103 and bilirubin was 1.6. Had my premeds ready and knew the counts were in range and did not have to contact Dr. Sarriera for the go ahead. A lot of times, we have to tell the nurses the labs are coming back. Not Emma. Hooked up my Dex drip. Gave me Benadryl and Tylenol pills to take. Hooked up the Kyrpolis to started after the flush from the Dex. Even had my Darzalex and hang that on my pole of drugs. Kyprolis started. Had to wait 15 minutes after that to start Darzalex. Vitals taken. Darzalex started at 9:30. About an hour earlier than usual. All was good. But Emma took vitals about every 1/2 hour for quite a while because my temperature was spiking. She stopped the drip for about 30 minutes to see what would happen. We sort of figured out it was because when I fell asleep between vitals, I was sleeping on that ear on the pillow. When she took my temp in the other ear, it was normal. Once Emma was satisfied that was probably the reason, she restarted the drip. Then went to vitals every hour. Nice sleep then. Drip was finished around 2:45. Again, about 45 minutes to an hour earlier then usual. Flushes done. Left the hospital around 3:15. My appointment is at 2:30 tomorrow for Kyprolis. Welcome back drugs. Welcome back my "treatment plan." I can do this. I will do this. I have to do this.
Last Sunday Bill and I were guests of Ken (our support group leader) at a BMT (bone marrow transplant) reunion for Florida Hospital. We set up a booth with lots of information about Multiple Myeloma. Information from our sponsor, International Myeloma Foundation. What a great organization for us. Check them out if you have a few minutes. Here is their website www.myeloma.org I so enjoyed talking to the people when they stopped at our booth. Not shy at all. Was happy especially talking with others that have Myeloma, inviting them to our support group meeting. And educating those who never heard of Multiple Myeloma. A lot of them thought it was Melanoma. So, so different from Myeloma. We also set up a ring toss game which seem to go over big. 4 other members of our support group joined us. There was a great luncheon. Then they had several great and informative speakers. Two young ladies from a musical support group at Florida Hospital sang a much appropriate song that brought a few tears to my eyes (and I am sure others). "I Can See Clearly Now."
Here a few lyrics that hit me. Of course they are not as the song is sung.
"I can see clearly now the rain is gone.
I can see all obstacles in my way.
It's gonna be bright, bright sunny shiny day.
Here is a rainbow I've been praying for.
Look all around you, there's nothing but blue skies
Look straight ahead, nothing but blue skies
It's gonna be a bright, bright sunny shiny day."
And to end a fun day, I won the door prize. Yes, me! There were over 200 people there. Thanks Ken for a wonderful day. I throughly enjoyed it. Let's do it again.
Finally, it's really another hot and humid summer Florida. Thank goodness for air. Bill usually starts his yard work as early as 8:30 and finishes up anywhere from 11 to around 12. We came to the realization that it is summer in Florida when we get to a store and the parking spaces are determined by shady spots and not how close you can get to the store. Not complaining because we are happy in Florida no matter what the temperature is and how humid it is.
Quote:
You are braver than you believe. Stronger than you seem. Smarter than you think. And loved more than you know.
This quote/saying was on a beautiful plaque that come from Kerri, Paul, Jakob, Kristopher, Chad, Leah, Juliana and Layton. Done in Myeloma colors too.
12 days without chemo. Just my Tuesday Dex. 12 days of Bill not driving me to the Cancer Center. 12 days of not getting my port accessed and drawing blood. 12 days to relax some at home. 12 days like the 12 days of Christmas! Ha! Was able to visit with Mark and Irene. Finally get to see Mimi, Aaron, Skylar, Olivia and meet Gray. Was nice to hear the laughter of little kids. Got to see their new homes. My favorite room between the two homes was Mimi's sewing room. Lol! Now who would have guess that??? Beautiful homes both of them though. We also were able to get to the beach again. Beautiful day. Had dinner with Kristi and girls one night. Got mom for a day of manicures, pedicures, naps and dinner. 12 days!! Was able to get in to my sewing room and finish a project I have been working on. Oh, I felt the effects of coming down off of drugs but the 12 days of no drugs kept them at bay in my mind. Didn't want to ruin our 12 days.
And today. Tuesdays the 21st, started back my treatments. Darzalex, Kyprolis, Dex. We left the house at 7 this morning. Appointment time 8. Was taken back to the lab draw room by Ellen and Kristine (new today and Ellen was training her). Vitals done. Needles went in to port without a problem. Blood draw was excellent. Needed, along with CMP and CBC draws, the draws for Myeloma. Six tubes total. Have an appointment with Dr. Sarriera on the 31st. My MRI brain scan is this Friday the 24th. Dentist appointment on Thursday, the 23rd. Busy week for us.
Sent to room 20 with Emma being my oncology nurse for the day. Excellent, excellent nurse. Was on top of everything from the beginning. First asked Bill what happened to his leg before we got started on me. He was bitten by something on the back of his calf. Not a fire ant bite. Looks like when he got bite when we were in Tampa. Emma questioned him about it and told him if it gets bigger, he needed to see our family doctor. Been taking Benadryl. Using a hydrocortisone cream. Even used a piece of aloe vera (from the plant I brought from Kerri's). Will look at it in the morning to see if it's bigger. Emma wanted to draw dots around it to see if it gets bigger but Bill said no. I wanted to put at least a few dots around it before he went to bed but no to that also. Will be checking it in the morning again.
Labs coming back. Saw them in my portal. Bill and I took bets on what my bilirubin and platelet count was going to be. Was ready to let Emma know they were back but here she comes with her cart. Bill tried to bet with her on my counts but that didn't work. Oh, my platelets were 103 and bilirubin was 1.6. Had my premeds ready and knew the counts were in range and did not have to contact Dr. Sarriera for the go ahead. A lot of times, we have to tell the nurses the labs are coming back. Not Emma. Hooked up my Dex drip. Gave me Benadryl and Tylenol pills to take. Hooked up the Kyrpolis to started after the flush from the Dex. Even had my Darzalex and hang that on my pole of drugs. Kyprolis started. Had to wait 15 minutes after that to start Darzalex. Vitals taken. Darzalex started at 9:30. About an hour earlier than usual. All was good. But Emma took vitals about every 1/2 hour for quite a while because my temperature was spiking. She stopped the drip for about 30 minutes to see what would happen. We sort of figured out it was because when I fell asleep between vitals, I was sleeping on that ear on the pillow. When she took my temp in the other ear, it was normal. Once Emma was satisfied that was probably the reason, she restarted the drip. Then went to vitals every hour. Nice sleep then. Drip was finished around 2:45. Again, about 45 minutes to an hour earlier then usual. Flushes done. Left the hospital around 3:15. My appointment is at 2:30 tomorrow for Kyprolis. Welcome back drugs. Welcome back my "treatment plan." I can do this. I will do this. I have to do this.
Last Sunday Bill and I were guests of Ken (our support group leader) at a BMT (bone marrow transplant) reunion for Florida Hospital. We set up a booth with lots of information about Multiple Myeloma. Information from our sponsor, International Myeloma Foundation. What a great organization for us. Check them out if you have a few minutes. Here is their website www.myeloma.org I so enjoyed talking to the people when they stopped at our booth. Not shy at all. Was happy especially talking with others that have Myeloma, inviting them to our support group meeting. And educating those who never heard of Multiple Myeloma. A lot of them thought it was Melanoma. So, so different from Myeloma. We also set up a ring toss game which seem to go over big. 4 other members of our support group joined us. There was a great luncheon. Then they had several great and informative speakers. Two young ladies from a musical support group at Florida Hospital sang a much appropriate song that brought a few tears to my eyes (and I am sure others). "I Can See Clearly Now."
Here a few lyrics that hit me. Of course they are not as the song is sung.
"I can see clearly now the rain is gone.
I can see all obstacles in my way.
It's gonna be bright, bright sunny shiny day.
Here is a rainbow I've been praying for.
Look all around you, there's nothing but blue skies
Look straight ahead, nothing but blue skies
It's gonna be a bright, bright sunny shiny day."
And to end a fun day, I won the door prize. Yes, me! There were over 200 people there. Thanks Ken for a wonderful day. I throughly enjoyed it. Let's do it again.
Finally, it's really another hot and humid summer Florida. Thank goodness for air. Bill usually starts his yard work as early as 8:30 and finishes up anywhere from 11 to around 12. We came to the realization that it is summer in Florida when we get to a store and the parking spaces are determined by shady spots and not how close you can get to the store. Not complaining because we are happy in Florida no matter what the temperature is and how humid it is.
Quote:
You are braver than you believe. Stronger than you seem. Smarter than you think. And loved more than you know.
This quote/saying was on a beautiful plaque that come from Kerri, Paul, Jakob, Kristopher, Chad, Leah, Juliana and Layton. Done in Myeloma colors too.
Wednesday, August 8, 2018
Vodka.
This is going to be a long one. One I need!!! One that are my feelings of the last few days, last few weeks last few months. One that I need to let out some of my anxieties with out taking a pill. I may look good but inside is not so good right now. I get this way every so often and need to vent. Venting here helps. Venting here is my way of letting it out. Venting here helps me so much. Venting here listens and doesn't hurt anyone. Venting here is not aimed at anyone. Just me venting.
Tuesday was our long day at the Cancer Center. Left the house at 7 and returned at 4:30. Got my lines in my port. Was able to have a good blood draw this time. Yeah. Took two tubes of blood for my CMP and CBC tests. Sent me to room 21 (noisy room). My oncology nurse was Miles. We like Miles. Took my 20 mgs of Dex pills. Lab results back about 9. Had to have approval to continue from Dr. Sarriera as my bilirubin was up again. He finally approved (was making rounds). Started my premeds of Benadryl, Tylenol capsules. IV of 20 mgs of Dex and then the Kyprolis IV. And this time, a Zometa IV that runs for 1/2 hour. This I get every 3 months for bone health. This was scheduled for Friday but they moved it so we didn't have make an extra trip to the hospital. After all that was finished, Darzalex IV was started around 10:30 at 25 ml. Vitals taken every hour and the ml increased each time till it finally reached 200 ml. Finally finished around 3:30. Slept off and on but not as good as I usually do on these long days. So many pills and so may IV's on Tuesday!
Went to bed around 1:30 this morning. Dex doesn't like me to sleep. I was emailing my oncology team at like 11. ;) Around 2:30 had horrible pains in my stomach that kept me up for another 1/2 hour. Finally fell asleep sometime after 3. Slept till about 9. Great morning. Ran the vacuum, changed the sheets, made a meatloaf for dinner Thursday, got a roast in the crock pot for tonight's dinner, cleaned up some mail and just some other things that needed done. Then about 11ish, tears started. Why, because Dex said it was time. These tears fell constantly from then on even through my doctor's appointment and getting my port accessed. These tears are still on the brink of beginning again. Hold back. Hold back. And I will for a bit but I can tell you they are going to start before the night is over. Just need to get them all out. These tears.
My appointment with Abby went well today. She has been with Dr. Sarriera almost 10 years and they think alike. I trust her and her anything she wants me to do. She came in the room with a bunch of papers saying she had her homework done. My email last night was questions I wanted to discuss durning my visit. She said she change my 15 minute appointment with her to an hour so we can discuss whatever we needed to.
First was the hazy area that was discovered on my MRI/brain scan. She showed us pictures of the area. It was like a thin, see through area located on part of my skull where my radiation treatment was localized. The area was not thick or mass looking. Abby will set up a MRI/brain scan in four weeks to see if there are any changes. She wants to do this before my next appointment with them. Praying it stays the same. Trying to believe it just from the radiation. Scare tissue. Trying to believe.
We then went on to discuss the amount of Dex (steroids) I am getting. Bill asked what Dex is actually doing for me. Abby said that Dex is very effective in killing Myeloma cells. Along with insomnia, higher blood pressure, mood swings, weight gain. She mentioned that I have been on Dex and tolerated Dex for quite a while now. Longer then a lot of their patients. She felt that maybe I should go down another 10 mg. This, for the Dex reason, made me start to cry. Why would I want to go down if Dex is killing Myeloma cells? Not sure I want to do this. Anyway, once I got my emotions back in line, we decided she would talk to Dr. Sarriera tomorrow and see what he thinks. Instead of 40 mg a week, go down to 30. That would have me taking 10 mg with an additional 20 via the IV on Darzalex days. And I guess, need to ask, only 10 mg all other Tuesdays. Will get this all cleared up tomorrow via emails. I seemed to be confused. Chemo brain here on this one for sure.
Bill brought up the visit of July 24th when she and Dr. Sarriera were on vacation and Dr. Landa would not give permission for me to get my Kyprolis. She agreed that if he looked at my previous appointments, he would have seen my labs on the 24th were better than other days that I was able to get my Kyprolis. Also, not happy that my oncology nurse that day told us a lower dose of Kyprolis wouldn't do anything for me anyway. Kyprolis is based on my weight and height and does not change. Abby said she would get to the bottom of this for us. And she will.
My blood pressure was not good today. First 160/90 in the doctor's office. Abby feels the Dex is causing this to be high. She wants me to stop taking my blood pressure pills starting tomorrow and monitor my blood pressure for several days without the pills since my Dex should be wearing off tomorrow.
Abby was very happy with all my lab results. My M-spike is back to zero and my light chains ratio is in the normal range. The IgG, IgA, IgM and the IgE all look good as well. This is great news. News we like to hear. News that give us some happy!!!
Discussed was also my Darzalex treatment. I will be on every other week for another 6 weeks and then once a month. If they see the once a month is not producing the same results, they will start back to every other week again. If only I could take Revlimid or Pomalist. These are the drugs that keep most Myeloma patients in remission. There is another drug they may consider. This drug was before Rvelimid and Pomalist. Thalidomide. Plus, Abby said there was another drug just approved but couldn't remember the name of it. So we just have to wait and see how the once a month Darzalex does.
Then on to my Kyprolis treatment on 5LP. 3:30 on the dot. They were waiting on me. Got my port accessed with a few tears in that room. Took my blood pressure and it was 178/81. Not good. Back to room 1 with my oncology nurse Caesar. He asked the normal questions and sent the order to the lab to mix my Kyprolis. I asked him to take my blood pressure again once I was settled in and calmed down some. When he did take it, it was 156/70. Better. Kyprolis mixed, administered, flushed with saline and Heparin, port lines removed and out of there around 4:45. Had to stop at the pharmacy. Hit the 5 o'clock traffic for the ride home. Home around 6.
This is my last two days of my battle with Myeloma. Two days out of many just like them over the last 2 years. Some days I am up for a fight and some days I am not. I understand that I can make my days happy or sad. I understand I have to keep battling this ugly disease (dress, don't ask). Some days the battle is harder than I can handle. Some days I slap it like a bitch. Just please, bare with me as I try to make the best of my life right now. Understand I do not like complaining but complain I must some times. Just listen and let me get it out. I love that I have so many friends and family that I can express my feelings with whenever. Ones that listen and don't always give advice even though I am sure they want to. Thank you for just being there.
Today there was a patient sitting in the chair next to me. She was going over her labs and bursted out saying, "Now I surely do not want any liver problems. I want to be able to drink my vodka." Well, how could you not laugh? We ended up talking throughout my treatment. She has been dealing with lung cancer for the last year. But what a funny, cheerful lady. Her daughter is her care giver and joined us in our conversation. My IV was finished before hers so wished her well. She said we may meet again because she is there 2 days a week also.
Quote:
Sometimes the strongest among us are the ones who smile through silent pain, cry behind closed doors and fights battles no one know about.
This is going to be a long one. One I need!!! One that are my feelings of the last few days, last few weeks last few months. One that I need to let out some of my anxieties with out taking a pill. I may look good but inside is not so good right now. I get this way every so often and need to vent. Venting here helps. Venting here is my way of letting it out. Venting here helps me so much. Venting here listens and doesn't hurt anyone. Venting here is not aimed at anyone. Just me venting.
Tuesday was our long day at the Cancer Center. Left the house at 7 and returned at 4:30. Got my lines in my port. Was able to have a good blood draw this time. Yeah. Took two tubes of blood for my CMP and CBC tests. Sent me to room 21 (noisy room). My oncology nurse was Miles. We like Miles. Took my 20 mgs of Dex pills. Lab results back about 9. Had to have approval to continue from Dr. Sarriera as my bilirubin was up again. He finally approved (was making rounds). Started my premeds of Benadryl, Tylenol capsules. IV of 20 mgs of Dex and then the Kyprolis IV. And this time, a Zometa IV that runs for 1/2 hour. This I get every 3 months for bone health. This was scheduled for Friday but they moved it so we didn't have make an extra trip to the hospital. After all that was finished, Darzalex IV was started around 10:30 at 25 ml. Vitals taken every hour and the ml increased each time till it finally reached 200 ml. Finally finished around 3:30. Slept off and on but not as good as I usually do on these long days. So many pills and so may IV's on Tuesday!
Went to bed around 1:30 this morning. Dex doesn't like me to sleep. I was emailing my oncology team at like 11. ;) Around 2:30 had horrible pains in my stomach that kept me up for another 1/2 hour. Finally fell asleep sometime after 3. Slept till about 9. Great morning. Ran the vacuum, changed the sheets, made a meatloaf for dinner Thursday, got a roast in the crock pot for tonight's dinner, cleaned up some mail and just some other things that needed done. Then about 11ish, tears started. Why, because Dex said it was time. These tears fell constantly from then on even through my doctor's appointment and getting my port accessed. These tears are still on the brink of beginning again. Hold back. Hold back. And I will for a bit but I can tell you they are going to start before the night is over. Just need to get them all out. These tears.
My appointment with Abby went well today. She has been with Dr. Sarriera almost 10 years and they think alike. I trust her and her anything she wants me to do. She came in the room with a bunch of papers saying she had her homework done. My email last night was questions I wanted to discuss durning my visit. She said she change my 15 minute appointment with her to an hour so we can discuss whatever we needed to.
First was the hazy area that was discovered on my MRI/brain scan. She showed us pictures of the area. It was like a thin, see through area located on part of my skull where my radiation treatment was localized. The area was not thick or mass looking. Abby will set up a MRI/brain scan in four weeks to see if there are any changes. She wants to do this before my next appointment with them. Praying it stays the same. Trying to believe it just from the radiation. Scare tissue. Trying to believe.
We then went on to discuss the amount of Dex (steroids) I am getting. Bill asked what Dex is actually doing for me. Abby said that Dex is very effective in killing Myeloma cells. Along with insomnia, higher blood pressure, mood swings, weight gain. She mentioned that I have been on Dex and tolerated Dex for quite a while now. Longer then a lot of their patients. She felt that maybe I should go down another 10 mg. This, for the Dex reason, made me start to cry. Why would I want to go down if Dex is killing Myeloma cells? Not sure I want to do this. Anyway, once I got my emotions back in line, we decided she would talk to Dr. Sarriera tomorrow and see what he thinks. Instead of 40 mg a week, go down to 30. That would have me taking 10 mg with an additional 20 via the IV on Darzalex days. And I guess, need to ask, only 10 mg all other Tuesdays. Will get this all cleared up tomorrow via emails. I seemed to be confused. Chemo brain here on this one for sure.
Bill brought up the visit of July 24th when she and Dr. Sarriera were on vacation and Dr. Landa would not give permission for me to get my Kyprolis. She agreed that if he looked at my previous appointments, he would have seen my labs on the 24th were better than other days that I was able to get my Kyprolis. Also, not happy that my oncology nurse that day told us a lower dose of Kyprolis wouldn't do anything for me anyway. Kyprolis is based on my weight and height and does not change. Abby said she would get to the bottom of this for us. And she will.
My blood pressure was not good today. First 160/90 in the doctor's office. Abby feels the Dex is causing this to be high. She wants me to stop taking my blood pressure pills starting tomorrow and monitor my blood pressure for several days without the pills since my Dex should be wearing off tomorrow.
Abby was very happy with all my lab results. My M-spike is back to zero and my light chains ratio is in the normal range. The IgG, IgA, IgM and the IgE all look good as well. This is great news. News we like to hear. News that give us some happy!!!
Discussed was also my Darzalex treatment. I will be on every other week for another 6 weeks and then once a month. If they see the once a month is not producing the same results, they will start back to every other week again. If only I could take Revlimid or Pomalist. These are the drugs that keep most Myeloma patients in remission. There is another drug they may consider. This drug was before Rvelimid and Pomalist. Thalidomide. Plus, Abby said there was another drug just approved but couldn't remember the name of it. So we just have to wait and see how the once a month Darzalex does.
Then on to my Kyprolis treatment on 5LP. 3:30 on the dot. They were waiting on me. Got my port accessed with a few tears in that room. Took my blood pressure and it was 178/81. Not good. Back to room 1 with my oncology nurse Caesar. He asked the normal questions and sent the order to the lab to mix my Kyprolis. I asked him to take my blood pressure again once I was settled in and calmed down some. When he did take it, it was 156/70. Better. Kyprolis mixed, administered, flushed with saline and Heparin, port lines removed and out of there around 4:45. Had to stop at the pharmacy. Hit the 5 o'clock traffic for the ride home. Home around 6.
This is my last two days of my battle with Myeloma. Two days out of many just like them over the last 2 years. Some days I am up for a fight and some days I am not. I understand that I can make my days happy or sad. I understand I have to keep battling this ugly disease (dress, don't ask). Some days the battle is harder than I can handle. Some days I slap it like a bitch. Just please, bare with me as I try to make the best of my life right now. Understand I do not like complaining but complain I must some times. Just listen and let me get it out. I love that I have so many friends and family that I can express my feelings with whenever. Ones that listen and don't always give advice even though I am sure they want to. Thank you for just being there.
Today there was a patient sitting in the chair next to me. She was going over her labs and bursted out saying, "Now I surely do not want any liver problems. I want to be able to drink my vodka." Well, how could you not laugh? We ended up talking throughout my treatment. She has been dealing with lung cancer for the last year. But what a funny, cheerful lady. Her daughter is her care giver and joined us in our conversation. My IV was finished before hers so wished her well. She said we may meet again because she is there 2 days a week also.
Quote:
Sometimes the strongest among us are the ones who smile through silent pain, cry behind closed doors and fights battles no one know about.
Wednesday, August 1, 2018
Mike.
Yesterday was Cycle 3 Day 8 so they told me. And what a day it was. They were not able to draw blood from my port. Had two oncology nurses in the draw station. The one I got was fairly new. So tried these things when she couldn't get a blood return. Removed needles and put in new needles in my port. We laid back, coughed, arm to the right, head to the left, head to the right, arm to the left, stand up, look right, both arms in the air, sit down and lean forward with your elbows on your knees. Nope, not happening. No blood. Called in the other oncology nurse. Been there for quite a while. Had her before and not problem. She went through some of the same positions. Wasn't happening. Asked if they could use my arm. We need six tubes today. Okay. First nurse back. Pricked me. No blood drawing. Moved needle left, right, in further. Nothing. Second nurse back. No luck. Okay, let's try the left arm and called in a third person that usually never fails getting blood draws. Yes, she was the one. Got six tubes in no time finally. This took so long that Bill came back to the draw station to see what was going on. Today my arms are bruising up nicely. ;)
Went back to my room and my oncology nurse there was Kerrie. And my coach was Jakob. Thought that was funny. Not spelled like my Kerri though! Jakob wanted to see what his Didi had to do each week. Kerrie proceeded to give my another 20 mg of Dex via IV. I had already taken my 40 orally at home before we left. I questioned this and she said it was ordered as such. Okay, 60 mg of steroids are good??? Up till 1 and up again at 7. Labs back. Bilirubin was 2.3. Had to call Dr. Sarriera for go ahead on the chemo (Kyprolis). He was with patients so it took awhile. Potassium low so had to take a pill. Finally got the go ahead and tell lab to mix my Kyprolis. Took awhile again. Bill finally came back and relieved Jakob. His girlfriend (Audrey) was in the waiting room with Bill. Glad Bill did.
I was handed the phone and was told Dr. Sarriera wanted to talk to me. Thinking this is not so good if he is calling while I am have my treatment. Wanted to tell me that my case and MRI/brain scan was reviewed at the "hematology oncology multidisciplinary conference" just a little before he called. They found a hazy area in the indentation on the right side of my head where I had my radiation. This could be one of several things, a hazy area, inflammation from the radiation even though it's been over a year, scar tissue or Multiple Myeloma. Since there isn't any MRI to compare it to before the radiation, we will continue 6 to 8 more weeks of my treatment plan and then do the MRI again. He doesn't want to do anything that is invasive at this time, like more radiation or a biopsy. Needs something to compare. We are praying that it's any of the ones above except the Myeloma. Need a break here!
Today, Wednesday, I went back for my Cycle 3, day 9 Kyprolis. Was taken back to the draw station by Ellen. Have had her several times and no problems. BUT guess what, no blood draw again. Didn't need labs but need to have blood draw to show my lines are clear for the chemo. We did a few dances (Ha!) but nothing. Finally said my tubes going to my port were probably clogged (small clots). So added a blood thinner through my port to clean it. This was TPA (Tissue plasminogen activator). TPA in a much higher is given to people that are having a stroke.
TPA takes abut 30 minutes to work. Miles was my oncology nurse in my room. He finally, after 45 minutes, got a good blood draw. My Kyprolis had been mixed and ready for my infusion. Administered that, my saline IV of 3 minutes, my Heprian flush, removed my needles in my port and we were done. Another day that should have been quick but seems like something stands in the way.
Go back next Tuesday for my long Darzalex day. Kyprolis then too. Then Wednesday for another IV of Kyprolis. Also, have any appointment with Dr. Sarriera and Abby.
Received a call from Moffett regarding the Car-T trial. I do not have the cell in my bone marrow they were looking for so I do not qualify for this trial. However, there is another trail out there that I do qualify for but is' full right now. If a spot comes open, they will call me. Really right now that's okay because I need to do this 6-8 weeks of treatment and another MRI so we know what this hazy spot is that is lurking out there.
Enjoying Jakob and Audrey's visit. Forgot what it was like to have teenagers. They got here Saturday. Had a great breakfast at KeKe's. Jakob wanted to pay. They have been to the beach twice, ate dinner at a Thai restaurant and a fondue restaurant. Shopped at Ron Jon's. Stayed with us some and his Aunt Kristi some. Got tattoo along with his Aunt Kristi. Fun, fun, fun.
There are always changes in the medical field. We have had the pleasure of becoming friends with one of the oncology nurses. Mike. He has treated me several times and is so knowledgeable in his field of oncology. When he would pass a room that I was being treated in, he never failed to pop his head in and say hello and see how I was doing. Also an avid reader, he and Bill exchanged a lot about authors and good books to read. Mike is staying with UF Health Cancer Center but going to another location. They are lucky to get him.
Quote:
Saw this on a t-shirt (I added a few things to it). Had to use this tonight for my quote. Just seemed appropriate.
I have been stuck with more needles, had more x-rays, MRIs, pet scans, tests. procedures during my journey so far, than most people will have in a life time. I am a cancer warrior!
Yesterday was Cycle 3 Day 8 so they told me. And what a day it was. They were not able to draw blood from my port. Had two oncology nurses in the draw station. The one I got was fairly new. So tried these things when she couldn't get a blood return. Removed needles and put in new needles in my port. We laid back, coughed, arm to the right, head to the left, head to the right, arm to the left, stand up, look right, both arms in the air, sit down and lean forward with your elbows on your knees. Nope, not happening. No blood. Called in the other oncology nurse. Been there for quite a while. Had her before and not problem. She went through some of the same positions. Wasn't happening. Asked if they could use my arm. We need six tubes today. Okay. First nurse back. Pricked me. No blood drawing. Moved needle left, right, in further. Nothing. Second nurse back. No luck. Okay, let's try the left arm and called in a third person that usually never fails getting blood draws. Yes, she was the one. Got six tubes in no time finally. This took so long that Bill came back to the draw station to see what was going on. Today my arms are bruising up nicely. ;)
Went back to my room and my oncology nurse there was Kerrie. And my coach was Jakob. Thought that was funny. Not spelled like my Kerri though! Jakob wanted to see what his Didi had to do each week. Kerrie proceeded to give my another 20 mg of Dex via IV. I had already taken my 40 orally at home before we left. I questioned this and she said it was ordered as such. Okay, 60 mg of steroids are good??? Up till 1 and up again at 7. Labs back. Bilirubin was 2.3. Had to call Dr. Sarriera for go ahead on the chemo (Kyprolis). He was with patients so it took awhile. Potassium low so had to take a pill. Finally got the go ahead and tell lab to mix my Kyprolis. Took awhile again. Bill finally came back and relieved Jakob. His girlfriend (Audrey) was in the waiting room with Bill. Glad Bill did.
I was handed the phone and was told Dr. Sarriera wanted to talk to me. Thinking this is not so good if he is calling while I am have my treatment. Wanted to tell me that my case and MRI/brain scan was reviewed at the "hematology oncology multidisciplinary conference" just a little before he called. They found a hazy area in the indentation on the right side of my head where I had my radiation. This could be one of several things, a hazy area, inflammation from the radiation even though it's been over a year, scar tissue or Multiple Myeloma. Since there isn't any MRI to compare it to before the radiation, we will continue 6 to 8 more weeks of my treatment plan and then do the MRI again. He doesn't want to do anything that is invasive at this time, like more radiation or a biopsy. Needs something to compare. We are praying that it's any of the ones above except the Myeloma. Need a break here!
Today, Wednesday, I went back for my Cycle 3, day 9 Kyprolis. Was taken back to the draw station by Ellen. Have had her several times and no problems. BUT guess what, no blood draw again. Didn't need labs but need to have blood draw to show my lines are clear for the chemo. We did a few dances (Ha!) but nothing. Finally said my tubes going to my port were probably clogged (small clots). So added a blood thinner through my port to clean it. This was TPA (Tissue plasminogen activator). TPA in a much higher is given to people that are having a stroke.
TPA takes abut 30 minutes to work. Miles was my oncology nurse in my room. He finally, after 45 minutes, got a good blood draw. My Kyprolis had been mixed and ready for my infusion. Administered that, my saline IV of 3 minutes, my Heprian flush, removed my needles in my port and we were done. Another day that should have been quick but seems like something stands in the way.
Go back next Tuesday for my long Darzalex day. Kyprolis then too. Then Wednesday for another IV of Kyprolis. Also, have any appointment with Dr. Sarriera and Abby.
Received a call from Moffett regarding the Car-T trial. I do not have the cell in my bone marrow they were looking for so I do not qualify for this trial. However, there is another trail out there that I do qualify for but is' full right now. If a spot comes open, they will call me. Really right now that's okay because I need to do this 6-8 weeks of treatment and another MRI so we know what this hazy spot is that is lurking out there.
Enjoying Jakob and Audrey's visit. Forgot what it was like to have teenagers. They got here Saturday. Had a great breakfast at KeKe's. Jakob wanted to pay. They have been to the beach twice, ate dinner at a Thai restaurant and a fondue restaurant. Shopped at Ron Jon's. Stayed with us some and his Aunt Kristi some. Got tattoo along with his Aunt Kristi. Fun, fun, fun.
There are always changes in the medical field. We have had the pleasure of becoming friends with one of the oncology nurses. Mike. He has treated me several times and is so knowledgeable in his field of oncology. When he would pass a room that I was being treated in, he never failed to pop his head in and say hello and see how I was doing. Also an avid reader, he and Bill exchanged a lot about authors and good books to read. Mike is staying with UF Health Cancer Center but going to another location. They are lucky to get him.
Quote:
Saw this on a t-shirt (I added a few things to it). Had to use this tonight for my quote. Just seemed appropriate.
I have been stuck with more needles, had more x-rays, MRIs, pet scans, tests. procedures during my journey so far, than most people will have in a life time. I am a cancer warrior!
Subscribe to:
Posts (Atom)