Myeloma Shells.
Last night, Monday, January 14th was our monthly Myeloma support group meeting. I forgot to count how many were there. I am guessing at least 30. Speaker was great even though she had to leave early. She spoke on healthy eating and cancer fatigue. Both very good articles especially the fatigue. It's is real and she had some pointers on trying to relieve some of the fatigue feelings. Food was excellent again. Vinzo's is the restaurant that prepares it for us. We had chef salad, regular salad, eggplant parmesan, spinach lasagna, spinach and mushroom chicken Alfredo, pasta sauce, penne pasta, cakes and cannolis. Doesn't that make you want to come to one of our meetings? Our next meeting is February 11. Our very own Benn will be our speaker. Can't miss this one. Seriously, if you read this and you know someone that is dealing with Myeloma, we would be glad to have them attend one of our meetings and they will be hooked. If you need more info, IM me. It's a happy place for me I know.
1 down and 3 to go. I had my Kyprolis treatment today, January 15th. Tomorrow I will get another one. Then January 22nd and January 23rd (that date sounds familiar), I get the last two Kyprolis treatments until after the pet scan results. My appointment has been set for January 30th for the pet scan. Will see Dr. Sarriera on February 1st. Then we go from there. No active Myeloma (this is what we want) treatment like doing now but only once a week instead of twice and changes to dosages. Darzalex the same (once a month, same dosage), Kyprolis once a week instead of twice (dosage will be half of what it is now) and no Dex (dosage ZERO). This is what we want. Myeloma labs will be the monitor of this plan. I am assuming these will be every 4 weeks before my appointments with Dr. Sarriera. Will verify all this at my appointment on the 1st. Myeloma found (this we do not want), another treatment plan will be started as the one above isn't working. Whatever happens, I will be on a treatment plan forever as this Myeloma I have is aggressive. So preparing myself for a forever treatment plan. Maybe there will be a cure found for Myeloma and I will be cured before my forever wears out.
Today I have Kerrie in the lab draw station. When she and YoYo were discussing my labs to be drawn, she said we only needed to dram CBC labs. I questioned her why not the CPM? This is the lab that measures my bilirubin. She explained I questioned this once before and she researched it. Only need to draw for bilirubin every 28 days unless the doctor orders it. So something else we need to keep track of. Port accessed, labs drawn and off to Vanessa in room 21. Found Bill already seated and waiting on me. Vanessa asked usual questions and said she would get the lab to mix my Kyprolis. Oh but wait, you have to wait until you get my lab results back for my platelets first. She just left the room. Advocate, advocate. Platelets drop to 86 from 118 last week. Still okay to go.
Mixed the Kyprolis, administered, port access removed, done. See you tomorrow, Wednesday, January 16th.
During our support group meeting, the last thing we do is go around the room and tell of our journeys. We have heard it all before from some of the members but give them our respect so we can share with the new persons (we had 4 last night) and hear theirs. When it was my turn, I told of my July 2016 diagnosed date, November 2016 transplant, 6 month after relapsed date, radiation 2017, relapse, treatment plan I am now receiving. Then I told of my upcoming pet scan and what happens when we get the results. As I was speaking, I said if the pet scan doesn't show any Myeloma shells. What shells? Someone hollered chemo brain. What a good laugh we all had. Shells??? Because we live in Florida? This is why our support group is good for us all. Laughter. But really shells??? I do like that better then cells.
Quote:
We are cancer warriors and at times, we can laugh without the fear of the future.
Tuesday, January 15, 2019
Wednesday, January 9, 2019
Sharon/Aunt Margaret.
This week started out with my Darzalex and Kyprolis yesterday, January 8th. Left home at 7 AM and left the hospital @ 2 PM. Bill and I said that was the best time ever for our long day. Things were running smoothly. Platelets and bilirubin were in the range they needed to be without having to contact Dr. Sarriera for approval. Our oncology nurse, Angie, knows my procedure of times for what drugs when and moved us along. Of course, within her administering my premeds of Tylenol, Benadryl and more steroids, the Benadryl put me out in about 15 minutes. Slept off and on most of the treatment. Angie had to do vitals every hour so that woke me a bit. But went right back to sleep. However, I didn't go to bed until 12:30 AM and have been up since 4:30 this morning. Dang Dex. And right now I am just starting to get tired. I think once I go to sleep, I will sleep for 2 days. Hopefully there will not be a lot mistakes in my blog. :)
Today, January 9th, I had my infusion of Kyprolis. Arrived about 15 minutes before my 1.30 appointment time hoping since I had an appointment with Dr. Sarriera, they may take me early. Nope. They were very busy and I didn't get called back to the draw stations until about 1:45. I only have to have them access my port with the needles for the chemo to go through. No labs to be drawn. Once that was done, I went to room 17 and Julia. She met me in the hallway and said - told them to go on and mix your Kyprolis. She kept checking to see if ready but they were so busy it took a bit. She knew I had a doctor's appointment. Meanwhile, we had a visitor. Desiree. Our Desiree. She looks great. Still the same caring person. Was so glad to see her. She likes her new position. This week she is back helping Dr. Sarriera train for her old position. Person she trained before was not a good fit. I think I could have told you all that. But no one is going to fill Desiree's shoes as far as I am concerned, so don't try. :) Desiree did introduced the person she is training to us, Ana. She was very nice. Seemed to be interested in what I have to say. Had to laugh because Desiree handed me her business cards. Two of them. I asked if she does everything in twos now since she had the twins. Anyway, finally finished with my infusion in plenty of time to get to the 2nd floor for my doctor's appointment.
Appointment was scheduled for 3:15. I was in the bathroom when Abbey came out in the waiting room to get me. So she finished off with another patient. Didn't get called back then until close to 3:45 then. Talked with Abbey first. Then she and Dr. Sarriera came in the room. All labs looked good. Going to finish out my treatments next week and the following week. January 23rd will be the last Kyprolis appointment for now. Then a pet scan to be done followed by an appointment with Dr. Sarriera to discuss the results. He wants the pet scan to be scheduled the week of January 28th with his appointment to be within a day or two following the scan. Knows the pet scan results hits my portal almost within the same day it's done, depending on time and that we see the results and don't alway understand some of the comments. Having to wait to discuss with Dr. Sarriera is no fun. I have an appointment set up for February 1st with him but Abbey will change if she has too. And if I have the option of a day close to the 1st for the scan, I will definitely schedule then. He will not do another bone marrow biopsy. Last few ones were good so sees no reason for one.
Here are my options once pet scan results are finalized. If there isn't any myeloma found, I will go on a "forever" maintenance plan of 3 weeks of Kyprolis but only once a week. My Kyprolis will be only half the dosage that is infused now. Along with the once a week plan, I will still have my Darazlex once a month and that will during the first week. There will be no Dex. Bill was so happy about that. I called it the "forever" maintenance plan because my type of Myeloma is aggressive once it starts and we don't want to give it a chance to get started again if nothing shows in the pet scan. Dr. Sarriera said that maybe in 2 years, 5 years, 10 years, he may revisit the plan. If there is Myeloma detected in the pet scan results, my treatment plan will be change because obviously the one I am on isn't working. This will be discussed, if necessary, at my appointment on the 1st of February. We are praying this part will not happen. But if it does, we will again fight. Bill and I both hope and pray the "no" Myeloma detected are the results. We are happy about all the lab results but until the pet scan is done, we can not be up and up because we have been slapped down so many times. And again, if this happens, we will start the fight again! So as of right now, we are anxiously waiting on the pet scan. Dr. Sarriera and Abbey both left with a hand shake and I am sure, said a pray the pet scan comes back clean. Picked up a pharmacy ordered and left the Cancer Center at almost 5. Crawled home. Took us 1 hour and 10 minutes to go 13 miles. Needless to say, Bill was very tensed till we got home. Sorry Michelle to worry you. What a great friend you are!!!
Michelle and Gery had a visitor from New York for several weeks. Michelle's Aunt Sharon usually comes to stay with them in the summer. But she had the opportunity to go to Germany during the time frame. That move her visit out to November/December. Sharon, AKA Aunt Margaret as called by Michelle and Gery's granddaughter Callie, went shopping with mom and me one day. Mom also had to stop at the bank. Sharon opted to wait in the car while we went in to the bank. As a joke, I told her I was locking her in the car. Hit the lock button on my keys and never hit the unlock button. OOPS. Just forgot. Sharon somehow bumped the door unlock button by the door knob and my alarm went off. She said she just sat there for a bit and pretended it wasn't her car that the alarm was going off in. Finally, she figured she better do something as it was getting annoying. So she crawled up between the seats and hit the unlock button for my door. The alarm, finally after a bit, stopped. Sorry Sharon. What a good laugh we had then once mom and I came out of the bank. We never heard it. Funny as it is, no one came to see if Sharon needed help and that was why she set off the alarm. Just saying.
Quote:
Together as a team, we are stronger and tougher than cancer.
This week started out with my Darzalex and Kyprolis yesterday, January 8th. Left home at 7 AM and left the hospital @ 2 PM. Bill and I said that was the best time ever for our long day. Things were running smoothly. Platelets and bilirubin were in the range they needed to be without having to contact Dr. Sarriera for approval. Our oncology nurse, Angie, knows my procedure of times for what drugs when and moved us along. Of course, within her administering my premeds of Tylenol, Benadryl and more steroids, the Benadryl put me out in about 15 minutes. Slept off and on most of the treatment. Angie had to do vitals every hour so that woke me a bit. But went right back to sleep. However, I didn't go to bed until 12:30 AM and have been up since 4:30 this morning. Dang Dex. And right now I am just starting to get tired. I think once I go to sleep, I will sleep for 2 days. Hopefully there will not be a lot mistakes in my blog. :)
Today, January 9th, I had my infusion of Kyprolis. Arrived about 15 minutes before my 1.30 appointment time hoping since I had an appointment with Dr. Sarriera, they may take me early. Nope. They were very busy and I didn't get called back to the draw stations until about 1:45. I only have to have them access my port with the needles for the chemo to go through. No labs to be drawn. Once that was done, I went to room 17 and Julia. She met me in the hallway and said - told them to go on and mix your Kyprolis. She kept checking to see if ready but they were so busy it took a bit. She knew I had a doctor's appointment. Meanwhile, we had a visitor. Desiree. Our Desiree. She looks great. Still the same caring person. Was so glad to see her. She likes her new position. This week she is back helping Dr. Sarriera train for her old position. Person she trained before was not a good fit. I think I could have told you all that. But no one is going to fill Desiree's shoes as far as I am concerned, so don't try. :) Desiree did introduced the person she is training to us, Ana. She was very nice. Seemed to be interested in what I have to say. Had to laugh because Desiree handed me her business cards. Two of them. I asked if she does everything in twos now since she had the twins. Anyway, finally finished with my infusion in plenty of time to get to the 2nd floor for my doctor's appointment.
Appointment was scheduled for 3:15. I was in the bathroom when Abbey came out in the waiting room to get me. So she finished off with another patient. Didn't get called back then until close to 3:45 then. Talked with Abbey first. Then she and Dr. Sarriera came in the room. All labs looked good. Going to finish out my treatments next week and the following week. January 23rd will be the last Kyprolis appointment for now. Then a pet scan to be done followed by an appointment with Dr. Sarriera to discuss the results. He wants the pet scan to be scheduled the week of January 28th with his appointment to be within a day or two following the scan. Knows the pet scan results hits my portal almost within the same day it's done, depending on time and that we see the results and don't alway understand some of the comments. Having to wait to discuss with Dr. Sarriera is no fun. I have an appointment set up for February 1st with him but Abbey will change if she has too. And if I have the option of a day close to the 1st for the scan, I will definitely schedule then. He will not do another bone marrow biopsy. Last few ones were good so sees no reason for one.
Here are my options once pet scan results are finalized. If there isn't any myeloma found, I will go on a "forever" maintenance plan of 3 weeks of Kyprolis but only once a week. My Kyprolis will be only half the dosage that is infused now. Along with the once a week plan, I will still have my Darazlex once a month and that will during the first week. There will be no Dex. Bill was so happy about that. I called it the "forever" maintenance plan because my type of Myeloma is aggressive once it starts and we don't want to give it a chance to get started again if nothing shows in the pet scan. Dr. Sarriera said that maybe in 2 years, 5 years, 10 years, he may revisit the plan. If there is Myeloma detected in the pet scan results, my treatment plan will be change because obviously the one I am on isn't working. This will be discussed, if necessary, at my appointment on the 1st of February. We are praying this part will not happen. But if it does, we will again fight. Bill and I both hope and pray the "no" Myeloma detected are the results. We are happy about all the lab results but until the pet scan is done, we can not be up and up because we have been slapped down so many times. And again, if this happens, we will start the fight again! So as of right now, we are anxiously waiting on the pet scan. Dr. Sarriera and Abbey both left with a hand shake and I am sure, said a pray the pet scan comes back clean. Picked up a pharmacy ordered and left the Cancer Center at almost 5. Crawled home. Took us 1 hour and 10 minutes to go 13 miles. Needless to say, Bill was very tensed till we got home. Sorry Michelle to worry you. What a great friend you are!!!
Michelle and Gery had a visitor from New York for several weeks. Michelle's Aunt Sharon usually comes to stay with them in the summer. But she had the opportunity to go to Germany during the time frame. That move her visit out to November/December. Sharon, AKA Aunt Margaret as called by Michelle and Gery's granddaughter Callie, went shopping with mom and me one day. Mom also had to stop at the bank. Sharon opted to wait in the car while we went in to the bank. As a joke, I told her I was locking her in the car. Hit the lock button on my keys and never hit the unlock button. OOPS. Just forgot. Sharon somehow bumped the door unlock button by the door knob and my alarm went off. She said she just sat there for a bit and pretended it wasn't her car that the alarm was going off in. Finally, she figured she better do something as it was getting annoying. So she crawled up between the seats and hit the unlock button for my door. The alarm, finally after a bit, stopped. Sorry Sharon. What a good laugh we had then once mom and I came out of the bank. We never heard it. Funny as it is, no one came to see if Sharon needed help and that was why she set off the alarm. Just saying.
Quote:
Together as a team, we are stronger and tougher than cancer.
Thursday, December 27, 2018
Dick Cheney.
Christmas Eve open house at Kristi and Matt's was another successful one for them. A total of 87 adults/ kids attended and oh, 7 dogs. Wow, you two did it again. At one time, I couldn't see from the kitchenette area through the kitchen to the dining room. Lots of good food, good drinks and wonderful people. Let's do it again.
Sasha and Ellie came home with us to spend Christmas Eve night. We went over to see the luminaries lined up on the street in Michelle and Gery's development. So pretty. Girls settled pretty early.
We were up around 8. I had to wake the girls up so we could make our traditional monkey bread for Christmas morning. Sasha asked if monkey bread was a Christmas thing with everyone. No, just a tradition I started years ago with them. Breakfast served and we all settled down waiting for Kristi, Matt and Mom to get here so we could open gifts. Seemed like forever to the girls. They got here about 10:30. Gifts opened. Late dinner started. We had invited Andy and Marilyn over to share our Christmas dinner with us. And a visit from Michelle, Gery and Sharon was the perfect end to our day. Last year I was sick starting Christmas Eve until about the 15th of January. Not this year. I was so totally able to enjoy our day.
Yesterday, December 26th, I had my infusion of Kyprolis. First labs were drawn but not without me fighting, along with YaYa, for my Myeloma labs to be drawn. Didn't see it in my chart. This time I had my orders from Dr. Sarriera in my pocket. When I mentioned these labs were to be drawn, Sam (a new employee) called a charge nurse and she looked at my charts and said that she didn't see anything in my on line chart about them. I handed my orders to Sam and he still said not to be drawn as there was nothing in my chart. Grrrrr! That's when YaYa (lab draw assistant) got involved. She explained to Sam that the order I had was valid. Took the order and went to see the charge nurse. All settled finally. Sam tried to look on line to see what color tubes (the lids of the tubes are different colors to denote the typed of test the lab needs to perform) would be needed. He then talked to another nurse who was drawing labs also. He had 3 tubes out and then I questioned that. Told him usually there are 5 tubes. Grrr!!!! Again, he consulted the other nurse. All said and done, I convinced them what I thought was to be drawn. I have been doing this draw for 2 years and I think I should know.
Today, December 27th, I talked to the oncology nurse that was accessing my port for todays chemo drip. She was one that I have had several times in the treatment rooms. I asked her why my orders didn't show up for my Myeloma labs? She explained there were two places they should be looking for orders. Asked me to tell Dr. Sarriera and staff to put my orders in as live orders and this should solve the problem. Got my infusion and on my way.
This week is my 3rd week so I will now until January 8th be free of chemo drips. I will only have to take my Dex next Tuesday. 12 days free. 12 days! I will battle some fatigue for a day or so. A rash on my face for a day or so. A swollen drug face for a day or so. A I could eat and eat for a day or so. Insomnia for a day or so. Hot and cold flashes for a day or so. Thirsty for a day or so. And a few other side effects for a day or so. Hopefully, off a day because of Christmas, I will be able to feel decent by Monday. Then have a day or so of feeling that way until we start again January 8th.
I have an appointment with Dr. Sarriera on January 9th. We will be discussing another pet scan, my labs, putting in my orders for Myeloma lab draw as live orders and another appointment after my scan to discuss where we will be going from there. As I mentioned before, I will be staying on Darzalex and Kyprolis and Dex as my maintenance plan since I have aggressive Myeloma. Just something I have to live with. Something that will help me live. Still have those quilts to make.
Sometime in October of 2017, yes 2017, we saw signs go up about a missing cat. Also, read about this cat on Next Door (a web site for our surrounding neighborhoods). He went missing and so many were looking for him. Well, one year and 3 months later, Dick Cheney, was reunited with his owners on Christmas Day 2018. Yes, one year and 3 months. Wow. Not a lot being said about his return and where he has been. But Dick Cheney is home.
Quote:
It's okay to cry. Sometimes tears are liquid prayers.
Christmas Eve open house at Kristi and Matt's was another successful one for them. A total of 87 adults/ kids attended and oh, 7 dogs. Wow, you two did it again. At one time, I couldn't see from the kitchenette area through the kitchen to the dining room. Lots of good food, good drinks and wonderful people. Let's do it again.
Sasha and Ellie came home with us to spend Christmas Eve night. We went over to see the luminaries lined up on the street in Michelle and Gery's development. So pretty. Girls settled pretty early.
We were up around 8. I had to wake the girls up so we could make our traditional monkey bread for Christmas morning. Sasha asked if monkey bread was a Christmas thing with everyone. No, just a tradition I started years ago with them. Breakfast served and we all settled down waiting for Kristi, Matt and Mom to get here so we could open gifts. Seemed like forever to the girls. They got here about 10:30. Gifts opened. Late dinner started. We had invited Andy and Marilyn over to share our Christmas dinner with us. And a visit from Michelle, Gery and Sharon was the perfect end to our day. Last year I was sick starting Christmas Eve until about the 15th of January. Not this year. I was so totally able to enjoy our day.
Yesterday, December 26th, I had my infusion of Kyprolis. First labs were drawn but not without me fighting, along with YaYa, for my Myeloma labs to be drawn. Didn't see it in my chart. This time I had my orders from Dr. Sarriera in my pocket. When I mentioned these labs were to be drawn, Sam (a new employee) called a charge nurse and she looked at my charts and said that she didn't see anything in my on line chart about them. I handed my orders to Sam and he still said not to be drawn as there was nothing in my chart. Grrrrr! That's when YaYa (lab draw assistant) got involved. She explained to Sam that the order I had was valid. Took the order and went to see the charge nurse. All settled finally. Sam tried to look on line to see what color tubes (the lids of the tubes are different colors to denote the typed of test the lab needs to perform) would be needed. He then talked to another nurse who was drawing labs also. He had 3 tubes out and then I questioned that. Told him usually there are 5 tubes. Grrr!!!! Again, he consulted the other nurse. All said and done, I convinced them what I thought was to be drawn. I have been doing this draw for 2 years and I think I should know.
Today, December 27th, I talked to the oncology nurse that was accessing my port for todays chemo drip. She was one that I have had several times in the treatment rooms. I asked her why my orders didn't show up for my Myeloma labs? She explained there were two places they should be looking for orders. Asked me to tell Dr. Sarriera and staff to put my orders in as live orders and this should solve the problem. Got my infusion and on my way.
This week is my 3rd week so I will now until January 8th be free of chemo drips. I will only have to take my Dex next Tuesday. 12 days free. 12 days! I will battle some fatigue for a day or so. A rash on my face for a day or so. A swollen drug face for a day or so. A I could eat and eat for a day or so. Insomnia for a day or so. Hot and cold flashes for a day or so. Thirsty for a day or so. And a few other side effects for a day or so. Hopefully, off a day because of Christmas, I will be able to feel decent by Monday. Then have a day or so of feeling that way until we start again January 8th.
I have an appointment with Dr. Sarriera on January 9th. We will be discussing another pet scan, my labs, putting in my orders for Myeloma lab draw as live orders and another appointment after my scan to discuss where we will be going from there. As I mentioned before, I will be staying on Darzalex and Kyprolis and Dex as my maintenance plan since I have aggressive Myeloma. Just something I have to live with. Something that will help me live. Still have those quilts to make.
Sometime in October of 2017, yes 2017, we saw signs go up about a missing cat. Also, read about this cat on Next Door (a web site for our surrounding neighborhoods). He went missing and so many were looking for him. Well, one year and 3 months later, Dick Cheney, was reunited with his owners on Christmas Day 2018. Yes, one year and 3 months. Wow. Not a lot being said about his return and where he has been. But Dick Cheney is home.
Quote:
It's okay to cry. Sometimes tears are liquid prayers.
Tuesday, December 18, 2018
Home.
Been a bit since I posted. Have a lot to say so warning of a long one but I have to do this so I can remember. Some may be personal but have to do this so I can remember. My words, my stress relief, my blog. So glad that you are following me. I do appreciate it.
As I mentioned Dr. Sarriers did not make me reschedule my chemo for the week I had off during Thanksgiving. That was great.
My appointment with Dr. Sarriera was December 7th. All labs back and ready for his review. I visited them in my portal along with Bill and all looked good to us. Just needed his "YES" they were. And we got that. Dr. Sarriera was happy with my numbers. M-spike was 0.1, same as last month. Blood counts good, platelets where they should be, good, good, good. We discussed me stopping the potassium (horse pill) at my suggestion. He said no. We discussed my weight gain. Hate it so. I am seriously going back to Weight Watchers in January. Dr. Sarriera didn't have a problems with me doing WW. Louise, where are you???
Dr. Sarriera will have me stay on plan as schedule till the end of January. 3 weeks on, 1 week off. Darzalex once a month during the first week. Dex every week even off week. I have an appointment with him on January 9th. At that time, he will discuss a Pet Scan being scheduled. Once Pet Scan results back and we see if the small mass by my thoracic spine has dissipated, I will probably only have to go to the Cancer Center once a week. Plan goes like this - week one will be Darzalex, Dex and Kyprolis. BUT the Kyprolis will be a double dose. Week two - Kyprolis (double dose) and Dex. Week three - Kyprolis (double dose) and Dex. Week four - no infusions only Dex. Then start over again. This may be a long time plan. He doesn't want me to be on a "nothing" plan. The Myeloma I have is the aggressive type so we want to prevent the return of it. Treatable but not curable so we will continue to treat this ugly disease. Dr. Sarriera, Abbey, the rest of his team, Bill and I will continue to treat this ugly disease.
December 10th week was sooo busy. Morning of the 10th I had my annual mammogram. Results are back, all good. Evening of December 10th was our annual Myeloma support group holiday dinner at PF Changs. I love our support group and was very happy for this get together. Posted a nice picture on Facebook. This night concluded our toy drive for the cancer kids at Florida Hospital. More later on that. December 11th was my Darzalex, Kyprolis and Dex the first week of my new cycle. Long day. Sharon came over to sit with Tommy since it was a long day. Thanks Sharon. December 12th was Kyprolis and Dex. December 13th was my colonoscopy. Was good with only 1 polyp. Hate the prep but love the results. Then December 14th was a stay at home and relax day. And we did just that.
December 15th - I picked up Sasha and Ellie. We did lunch at Panera. Then they decorated the tree. They are both getting taller so the decorations are able to be put higher on the tree. So glad they like to do this for us. Sasha went in the garage with Pap to looked through and take some of his old albums. She got a turn table for Chanukah. Meanwhile, Ellie mixed up dough for Snickerdoodles, peanut butter cookies and Russian tea cakes. And put them in the fridge for Sasha and me. We baked, stopped for dinner and baked some more. Girls then decorated, through tons of laughs, their annual Gingerbread house. Construction workers they are not. Even got Pap involved in this. December 16th - Matt picked up Ellie around 9 for Sunday school and Sasha slept till 11. Sasha and Pap took a ride on the scooter. She loved it. In the late afternoon, Sasha and I went for a walk and she took my hand as we crossed the street and said - Aww, Didi and Sasha time. Precious to my ears. Dinner Sunday night with all the Kleins.
On to December 17th our support group delivered the toys we collected to the Florida Hospital kids cancer wing. Ken, Cynthia, Maurice, Joyce, Bill and I were there to do this. Very heartfelt. 14 year old down to 24 months. We plan on doing this again. Ken, Bill and I had lunch then. Was a wonderful day.
December 18th - Kyprolis and Dex day. Tonight the 18th was Mom's holiday party at Savannah. Kristi, Sasha, Ellie and I were able to go. Fun time for all especially Mom. She loves it. Tomorrow, December 19th, I will finish out my week #2 infusion of Kyprolis. December 20th - Bill has a colonoscopy. Done then for the week. My next infusions aren't until December 26th and 27th. Then done until January 8th. Looking forward to this week off.
So pretty much ready for Christmas. All shopping, mostly Amazon, done. All wrapping done. Just need to do gift cards and donations yet. Have a few things I need from grocery store which we will do probably Friday early. Kristi and Matt are carrying on our PA tradition again this year but in FL with a Christmas Eve Open House - second one. Wish all our PA family and friends could join us. :(
Sasha and Ellie will be staying with us on Christmas Eve, another tradition even though we are in FL now. Christmas Day will be the Kleins, Mom and us. Some time that day our wonderful, special, great neighbors and awesome friends, the Tremaines- Michelle and Gery, will visit. Wouldn't be the same without them. Sharon will be with them this year. And maybe Tucker will come along. As you can see it was a very busy month for us with still things to finish. We got this don't we hon??
Bill and I gave our ticket to Thomas to get our car for us. Only waited a bit and we saw it coming in the area where we retrieve it. As our car was getting nearer, we started to head out to get in. The valet guys hold the doors open for us. As I get closer, I see a man about ready to get in. Okay, so I am thinking this wasn't our car. But I took a closer look and saw the butterfly and dragonfly hanging around the rear view mirror. This is our car. Someone said to the guy, I think your are getting in the wrong car but he kept walking. I think it was Bill that finally told the guy again. He finally stopped and started to laugh. He said to Bill - okay, but will you take me home?? Watched to see what car he got it and it was a light green Hyundai. We have a burgundy Honda. See, I keep telling you chemo brain is for real.
Quote:
Today, well lived, makes every yesterday a dream of meaningfulness and every tomorrow, a vision of hope.
Been a bit since I posted. Have a lot to say so warning of a long one but I have to do this so I can remember. Some may be personal but have to do this so I can remember. My words, my stress relief, my blog. So glad that you are following me. I do appreciate it.
As I mentioned Dr. Sarriers did not make me reschedule my chemo for the week I had off during Thanksgiving. That was great.
My appointment with Dr. Sarriera was December 7th. All labs back and ready for his review. I visited them in my portal along with Bill and all looked good to us. Just needed his "YES" they were. And we got that. Dr. Sarriera was happy with my numbers. M-spike was 0.1, same as last month. Blood counts good, platelets where they should be, good, good, good. We discussed me stopping the potassium (horse pill) at my suggestion. He said no. We discussed my weight gain. Hate it so. I am seriously going back to Weight Watchers in January. Dr. Sarriera didn't have a problems with me doing WW. Louise, where are you???
Dr. Sarriera will have me stay on plan as schedule till the end of January. 3 weeks on, 1 week off. Darzalex once a month during the first week. Dex every week even off week. I have an appointment with him on January 9th. At that time, he will discuss a Pet Scan being scheduled. Once Pet Scan results back and we see if the small mass by my thoracic spine has dissipated, I will probably only have to go to the Cancer Center once a week. Plan goes like this - week one will be Darzalex, Dex and Kyprolis. BUT the Kyprolis will be a double dose. Week two - Kyprolis (double dose) and Dex. Week three - Kyprolis (double dose) and Dex. Week four - no infusions only Dex. Then start over again. This may be a long time plan. He doesn't want me to be on a "nothing" plan. The Myeloma I have is the aggressive type so we want to prevent the return of it. Treatable but not curable so we will continue to treat this ugly disease. Dr. Sarriera, Abbey, the rest of his team, Bill and I will continue to treat this ugly disease.
December 10th week was sooo busy. Morning of the 10th I had my annual mammogram. Results are back, all good. Evening of December 10th was our annual Myeloma support group holiday dinner at PF Changs. I love our support group and was very happy for this get together. Posted a nice picture on Facebook. This night concluded our toy drive for the cancer kids at Florida Hospital. More later on that. December 11th was my Darzalex, Kyprolis and Dex the first week of my new cycle. Long day. Sharon came over to sit with Tommy since it was a long day. Thanks Sharon. December 12th was Kyprolis and Dex. December 13th was my colonoscopy. Was good with only 1 polyp. Hate the prep but love the results. Then December 14th was a stay at home and relax day. And we did just that.
December 15th - I picked up Sasha and Ellie. We did lunch at Panera. Then they decorated the tree. They are both getting taller so the decorations are able to be put higher on the tree. So glad they like to do this for us. Sasha went in the garage with Pap to looked through and take some of his old albums. She got a turn table for Chanukah. Meanwhile, Ellie mixed up dough for Snickerdoodles, peanut butter cookies and Russian tea cakes. And put them in the fridge for Sasha and me. We baked, stopped for dinner and baked some more. Girls then decorated, through tons of laughs, their annual Gingerbread house. Construction workers they are not. Even got Pap involved in this. December 16th - Matt picked up Ellie around 9 for Sunday school and Sasha slept till 11. Sasha and Pap took a ride on the scooter. She loved it. In the late afternoon, Sasha and I went for a walk and she took my hand as we crossed the street and said - Aww, Didi and Sasha time. Precious to my ears. Dinner Sunday night with all the Kleins.
On to December 17th our support group delivered the toys we collected to the Florida Hospital kids cancer wing. Ken, Cynthia, Maurice, Joyce, Bill and I were there to do this. Very heartfelt. 14 year old down to 24 months. We plan on doing this again. Ken, Bill and I had lunch then. Was a wonderful day.
December 18th - Kyprolis and Dex day. Tonight the 18th was Mom's holiday party at Savannah. Kristi, Sasha, Ellie and I were able to go. Fun time for all especially Mom. She loves it. Tomorrow, December 19th, I will finish out my week #2 infusion of Kyprolis. December 20th - Bill has a colonoscopy. Done then for the week. My next infusions aren't until December 26th and 27th. Then done until January 8th. Looking forward to this week off.
So pretty much ready for Christmas. All shopping, mostly Amazon, done. All wrapping done. Just need to do gift cards and donations yet. Have a few things I need from grocery store which we will do probably Friday early. Kristi and Matt are carrying on our PA tradition again this year but in FL with a Christmas Eve Open House - second one. Wish all our PA family and friends could join us. :(
Sasha and Ellie will be staying with us on Christmas Eve, another tradition even though we are in FL now. Christmas Day will be the Kleins, Mom and us. Some time that day our wonderful, special, great neighbors and awesome friends, the Tremaines- Michelle and Gery, will visit. Wouldn't be the same without them. Sharon will be with them this year. And maybe Tucker will come along. As you can see it was a very busy month for us with still things to finish. We got this don't we hon??
Bill and I gave our ticket to Thomas to get our car for us. Only waited a bit and we saw it coming in the area where we retrieve it. As our car was getting nearer, we started to head out to get in. The valet guys hold the doors open for us. As I get closer, I see a man about ready to get in. Okay, so I am thinking this wasn't our car. But I took a closer look and saw the butterfly and dragonfly hanging around the rear view mirror. This is our car. Someone said to the guy, I think your are getting in the wrong car but he kept walking. I think it was Bill that finally told the guy again. He finally stopped and started to laugh. He said to Bill - okay, but will you take me home?? Watched to see what car he got it and it was a light green Hyundai. We have a burgundy Honda. See, I keep telling you chemo brain is for real.
Quote:
Today, well lived, makes every yesterday a dream of meaningfulness and every tomorrow, a vision of hope.
Wednesday, November 28, 2018
Closed
Yesterday, November 27th, I started back on my Kyprolis chemo drip. Regular labs were drawn (CMP and CBC), taken to my room to wait on the numbers. And I had to have Myeloma labs drawn. Appointment with Dr. Sarriera next week. Lab numbers were good to precede with drip.
It's been over 24 month since my transplant so I was due immunizations. There seemed to be some confusion on which ones to get. Of course, I had my print out from Moffitt. Finally I got an email from Dr. Sarriera's office that I was to only get one. He will explain next week. The one I got was called "Pneumococcal Polysaccharide Vaccine". Yep. This vaccination protects older adults from pneumococcal disease. Yep. Pneumococcal disease is caused by bacteria that can spread from person to person through close contact. It can cause ear infections, pneumonia (lung problems) and meningitis to mention a few. This vaccine is recommend for all adults over 65. Anyone with certain longterm health problems. Anyone with a weakened immune system. Anyone who smokes or has asthma. This is a vaccine you should discuss with your doctor throughly! I wish I would have had this earlier. I got a sinus infection once I returned home. Caught it early and on antibiotics. I really feel I got it in the airport or on the plane. Dumb me for not wearing a mask.
And of course, I had my Dex yesterday. Typical up till 1 AM and up again at 7. A little rash today and a little bossy. Today, November 28th, I received my second dose of Kyprolis. Tomorrow should be a fairly good day for me. Then, if all falls as normal, Friday and Saturday morning, I will be wiped out. We shall see.
My lab draw oncology nurse yesterday was new and didn't want to draw the Myeloma labs. I had to persuade her this is my protocol about every 4 or 5 weeks. There wasn't an order in my notes for the labs but that is the norm for these draws. Call or email Dr. Sarriera's office. Don't just tell me it is not happening. Of course, I wasn't rude but stood my ground. 3 gold, 1 purple, 1 green - tubes to be used in addition to 1 more gold for the CMP and the CBC results. Yep. I know this. Finally she got it. The Myeloma labs take longer for testing and have to be done in order of all numbers to get back to Dr. Sarriera's for my appointment. Yep. I am my own advocate along with Bill. We got this.
The area where they stick the needles in to access my port seemed to give me some problems this week. Yesterday when I took the bandage off, I had a lot of fresh blood on the bandage. We cleaned the area and put a new bandage on it. Was okay when I checked in a few hours. Today when the lab draw oncology nurse accessed it again, it hurt. Said probably because of yesterday. This area continued to hurt till my room oncology nurse removed it after treatment. I told her I couldn't wait till she removed the needles. Didn't bleed much once removed. Doesn't hurt.
I will not have any chemo treatments next week other that Dex. Another week off. Yeah. Thank you Dr. Sarriera for not having me make up last week.
Six kids using one bathroom can be funny at times. You better keep the door locked for sure. Sasha came running in the house to use the bathroom and found the door was shut and locked. She said in her funny way of saying things "darn, it's closed". Maybe you had to be there but laugh anyway. Oh, there is another bathroom by the way they can use.
Quote:
My blog is dedicated to all of those who have lost the cancer fight and to all of us who won't quit the cancer fight.
Yesterday, November 27th, I started back on my Kyprolis chemo drip. Regular labs were drawn (CMP and CBC), taken to my room to wait on the numbers. And I had to have Myeloma labs drawn. Appointment with Dr. Sarriera next week. Lab numbers were good to precede with drip.
It's been over 24 month since my transplant so I was due immunizations. There seemed to be some confusion on which ones to get. Of course, I had my print out from Moffitt. Finally I got an email from Dr. Sarriera's office that I was to only get one. He will explain next week. The one I got was called "Pneumococcal Polysaccharide Vaccine". Yep. This vaccination protects older adults from pneumococcal disease. Yep. Pneumococcal disease is caused by bacteria that can spread from person to person through close contact. It can cause ear infections, pneumonia (lung problems) and meningitis to mention a few. This vaccine is recommend for all adults over 65. Anyone with certain longterm health problems. Anyone with a weakened immune system. Anyone who smokes or has asthma. This is a vaccine you should discuss with your doctor throughly! I wish I would have had this earlier. I got a sinus infection once I returned home. Caught it early and on antibiotics. I really feel I got it in the airport or on the plane. Dumb me for not wearing a mask.
And of course, I had my Dex yesterday. Typical up till 1 AM and up again at 7. A little rash today and a little bossy. Today, November 28th, I received my second dose of Kyprolis. Tomorrow should be a fairly good day for me. Then, if all falls as normal, Friday and Saturday morning, I will be wiped out. We shall see.
My lab draw oncology nurse yesterday was new and didn't want to draw the Myeloma labs. I had to persuade her this is my protocol about every 4 or 5 weeks. There wasn't an order in my notes for the labs but that is the norm for these draws. Call or email Dr. Sarriera's office. Don't just tell me it is not happening. Of course, I wasn't rude but stood my ground. 3 gold, 1 purple, 1 green - tubes to be used in addition to 1 more gold for the CMP and the CBC results. Yep. I know this. Finally she got it. The Myeloma labs take longer for testing and have to be done in order of all numbers to get back to Dr. Sarriera's for my appointment. Yep. I am my own advocate along with Bill. We got this.
The area where they stick the needles in to access my port seemed to give me some problems this week. Yesterday when I took the bandage off, I had a lot of fresh blood on the bandage. We cleaned the area and put a new bandage on it. Was okay when I checked in a few hours. Today when the lab draw oncology nurse accessed it again, it hurt. Said probably because of yesterday. This area continued to hurt till my room oncology nurse removed it after treatment. I told her I couldn't wait till she removed the needles. Didn't bleed much once removed. Doesn't hurt.
I will not have any chemo treatments next week other that Dex. Another week off. Yeah. Thank you Dr. Sarriera for not having me make up last week.
Six kids using one bathroom can be funny at times. You better keep the door locked for sure. Sasha came running in the house to use the bathroom and found the door was shut and locked. She said in her funny way of saying things "darn, it's closed". Maybe you had to be there but laugh anyway. Oh, there is another bathroom by the way they can use.
Quote:
My blog is dedicated to all of those who have lost the cancer fight and to all of us who won't quit the cancer fight.
Saturday, November 24, 2018
Paul
What a wonderful visit to see our Colorado family. One that I have been wanting to do for a while now. Thanksgiving with them. Has been almost 10 years since we have celebrated Thanksgiving with our Kerri. And I can guarantee you it won't be another 10 years. Our visit seemed short but we filled our days with love. Kristi and family also joined us which added more love. We finally had our 8 grandkids together again with us, Didi and Pap. They now age from 19 down to 11. Jakob, Kristopher, Sasha, Chad, Leah, Juliana, Ellie and Layton. What wonderful, caring kids they were to their Pap and their Didi.
Kerri and I decided since she and Paul were having 25 persons for Thanksgiving, we would prepare a lot of the food on Wednesday. We started that morning making stuffing (filling or dressing, what ever you want to call it), mac and cheese, carrot casserole (tastes like sweet potatoes), green bean casserole, cut up veggies and Kerri cleaned one of two turkeys. This one they were going to smoke. Needed to be ready to put in the smoker at 5 AM. Then Kerri started on dinner for Wednesday night. Great cook my Kerri is. Her kitchen is her domain. Oh, Bill made his ever so famous pickled eggs on Tuesday.
Thanksgiving morning brought more cooking for Kerri till we got over to their place. Kristi and us rented an Airb&b property about 10 minutes from Kerri and Paul's. Nice place. So much easier for them with their 6 kids and then to add the 6 of us. First turkey in the smoker at 5. Food made yesterday was heating up on grills, smokers and oven. Next turkey ready for the fryer. Juliana and I started a cheese and cracker turkey tray. Ellie and Leah helped us finish it. Wonderful. All foods and the carved turkeys were ready by 2:30, along with foods brought by her guests. Matt gave a nice blessing. Kerri then herded us in line to begin the piling of wonderful, delicious foods on our plates. 10 kids and 15 adults. Weather was so nice that our kids took their food outside and sat on the trampoline to eat. Then the pumpkin and apple pies, sorry we didn't make them, were ready to eat if you had room. Such a beautiful day with our families for Bill and I. Beautiful family along with some friends of Kerri and Paul's to make the day special.
Friday was another great day. We started by counting cows. Up to 19 with the little ones, the mommas and bulls. Then off to the grocery store to get a cake for Kristopher. Yes, we got to finally celebrate one of our CO grandkids birthday. Kristopher turned 17. What a great young man he is. Very proud of him we are.
All this I post because this is a day I want to remember the details of years from now. All this I post because I haven't had any chemo treatments or steroids since last Wednesday, November 14th. Just taking Lyrica for neuropathy, Acyclovir for shingle prevention, potassium and my vitamins. All this I post because I didn't or still don't have a foggy head, feel totally fatigued, feel the steroid ups and downs and the just don't feel good part of the days. All this I post because even though it was a short visit, we really enjoyed having our families together. Our beautiful daughters, Kristi and Kerri and their beautiful families!
Next Tuesday, November 27th and then Wednesday, November 28th, I will start back with my chemo treatments of Kyprolis and my Dex. Then I will have another week off, except for Dex. Dr. Sarriera is not going to have me make up the week (this week) that I lost. Thank you Dr Sarriera.
We rode along with Kerri and Paul 2 days to see the herd of cattle they are getting. Cows, heifers, bulls, calves (help Kerri) - total of 19 with more on the way. Kerri and Paul pointed them out and called them by name. White tags and branded XO and the number 7 backwards. As we were looking for their herd (another herd grazing with them), I saw a calf laying all by itself. Concerned it was lost as I didn't see any momma near by. Paul pulled up beside the calf and proceeded to moo or moan something. No momma. So he got out of the car, calf got up. Paul grabbed the calf by the tail (this didn't hurt) and it started crying. All of a sudden about 40 mommas came running towards Paul and this calf. And Paul came running towards the car. He made it. Sure wish I would have videoed this. Oh, I got to see the real momma.
Quote:
Being grateful is a good way to end the day.
What a wonderful visit to see our Colorado family. One that I have been wanting to do for a while now. Thanksgiving with them. Has been almost 10 years since we have celebrated Thanksgiving with our Kerri. And I can guarantee you it won't be another 10 years. Our visit seemed short but we filled our days with love. Kristi and family also joined us which added more love. We finally had our 8 grandkids together again with us, Didi and Pap. They now age from 19 down to 11. Jakob, Kristopher, Sasha, Chad, Leah, Juliana, Ellie and Layton. What wonderful, caring kids they were to their Pap and their Didi.
Kerri and I decided since she and Paul were having 25 persons for Thanksgiving, we would prepare a lot of the food on Wednesday. We started that morning making stuffing (filling or dressing, what ever you want to call it), mac and cheese, carrot casserole (tastes like sweet potatoes), green bean casserole, cut up veggies and Kerri cleaned one of two turkeys. This one they were going to smoke. Needed to be ready to put in the smoker at 5 AM. Then Kerri started on dinner for Wednesday night. Great cook my Kerri is. Her kitchen is her domain. Oh, Bill made his ever so famous pickled eggs on Tuesday.
Thanksgiving morning brought more cooking for Kerri till we got over to their place. Kristi and us rented an Airb&b property about 10 minutes from Kerri and Paul's. Nice place. So much easier for them with their 6 kids and then to add the 6 of us. First turkey in the smoker at 5. Food made yesterday was heating up on grills, smokers and oven. Next turkey ready for the fryer. Juliana and I started a cheese and cracker turkey tray. Ellie and Leah helped us finish it. Wonderful. All foods and the carved turkeys were ready by 2:30, along with foods brought by her guests. Matt gave a nice blessing. Kerri then herded us in line to begin the piling of wonderful, delicious foods on our plates. 10 kids and 15 adults. Weather was so nice that our kids took their food outside and sat on the trampoline to eat. Then the pumpkin and apple pies, sorry we didn't make them, were ready to eat if you had room. Such a beautiful day with our families for Bill and I. Beautiful family along with some friends of Kerri and Paul's to make the day special.
Friday was another great day. We started by counting cows. Up to 19 with the little ones, the mommas and bulls. Then off to the grocery store to get a cake for Kristopher. Yes, we got to finally celebrate one of our CO grandkids birthday. Kristopher turned 17. What a great young man he is. Very proud of him we are.
All this I post because this is a day I want to remember the details of years from now. All this I post because I haven't had any chemo treatments or steroids since last Wednesday, November 14th. Just taking Lyrica for neuropathy, Acyclovir for shingle prevention, potassium and my vitamins. All this I post because I didn't or still don't have a foggy head, feel totally fatigued, feel the steroid ups and downs and the just don't feel good part of the days. All this I post because even though it was a short visit, we really enjoyed having our families together. Our beautiful daughters, Kristi and Kerri and their beautiful families!
Next Tuesday, November 27th and then Wednesday, November 28th, I will start back with my chemo treatments of Kyprolis and my Dex. Then I will have another week off, except for Dex. Dr. Sarriera is not going to have me make up the week (this week) that I lost. Thank you Dr Sarriera.
We rode along with Kerri and Paul 2 days to see the herd of cattle they are getting. Cows, heifers, bulls, calves (help Kerri) - total of 19 with more on the way. Kerri and Paul pointed them out and called them by name. White tags and branded XO and the number 7 backwards. As we were looking for their herd (another herd grazing with them), I saw a calf laying all by itself. Concerned it was lost as I didn't see any momma near by. Paul pulled up beside the calf and proceeded to moo or moan something. No momma. So he got out of the car, calf got up. Paul grabbed the calf by the tail (this didn't hurt) and it started crying. All of a sudden about 40 mommas came running towards Paul and this calf. And Paul came running towards the car. He made it. Sure wish I would have videoed this. Oh, I got to see the real momma.
Quote:
Being grateful is a good way to end the day.
Wednesday, November 14, 2018
Pole
Monday night, October 12th, was our Myeloma support group meeting. And what another great meeting. We had two wonderful speakers. First an 49 year old man that has been battling Myeloma for several years. Two transplants and still is fighting. His journey is an inspiration to us all. Then we had a Doctor (sorry can't remember his name) speak about Myeloma and also about Pomalist, a Celegene drug. Wonderful info. This was our yearly Thanksgiving pot luck meeting. Lots of yummy food. Also, this was our IMF (International Myeloma Foundation) fund raiser. The IMF is our supporter of our group. These meetings are my happy place for a few hours. Next month is our yearly Christmas dinner at PF Changs. I hope Bill and I order better than we did last year. LOL.
I had my Darzalex, Dex and Kyprolis treatments yesterday. This is the first of my every other month for Darzalex. Next one isn't until December. Have another Kyprolis treatment today. The Kyprolis treatments will be 2 times a week for 3 weeks and then off a week. Dex will be taken every Tuesday no matter if I have treatments or not. Just came of 13 days of nothing but Dex. Still have my ups and downs of no drugs. But the Saturday, Sunday and Monday were great. Will have to see what my days will bring with only having Darzalex every month.
Today is my 2 year birthday. Yep, I am 2. Been 2 years, November 14th, since my transplant. Pulled all those stem cells out a few days before, cleansed them and on the 14th put them back. It's been 2 years and almost 4 months we have been fighting this ugly, incurable disease. Fighting we have been. Through my ups and downs. Through my tears and fears. Through my hopes and prayers. Through my family and friends support and prayers. Through my chemo treatments and radiation treatments. Through my Pet Scans, MRIs, X-rays, Cat Scans. Through my doctor appointments, emails to my oncology team, phone calls to the team. Through my bone marrow biopsies, Myeloma biopsies, lab draws, port insertion. Through my days of fatigue, mood swings and more tears. Through all this and more with my wonderful, supportive care beside me. Without Bill I would not have been able to get through my fighting this disease. And continue fighting we well as some of these "throughs" will continue. Fight we must until a cure is found. Through our continual days of treatments etc, we must fight. And we will fight.
So several weeks ago while stopped for a red light on the way to the Cancer Center, I watched as a guy on his cell phone reading a text I guess, walked across the street. I continued to watch him as he stepped up on the sidewalk. He walked about 2 feet still reading something on his phone and ran right in to a pole. This pole was even painted yellow. It was a great way to make my day.
My quote is one that I stole from a friend's FB post. Thanks Nancy.
Quote:
Worry is a conversation you have with yourself about things you can not change. Prayer is a conversation you have with God about things he can change.
Monday night, October 12th, was our Myeloma support group meeting. And what another great meeting. We had two wonderful speakers. First an 49 year old man that has been battling Myeloma for several years. Two transplants and still is fighting. His journey is an inspiration to us all. Then we had a Doctor (sorry can't remember his name) speak about Myeloma and also about Pomalist, a Celegene drug. Wonderful info. This was our yearly Thanksgiving pot luck meeting. Lots of yummy food. Also, this was our IMF (International Myeloma Foundation) fund raiser. The IMF is our supporter of our group. These meetings are my happy place for a few hours. Next month is our yearly Christmas dinner at PF Changs. I hope Bill and I order better than we did last year. LOL.
I had my Darzalex, Dex and Kyprolis treatments yesterday. This is the first of my every other month for Darzalex. Next one isn't until December. Have another Kyprolis treatment today. The Kyprolis treatments will be 2 times a week for 3 weeks and then off a week. Dex will be taken every Tuesday no matter if I have treatments or not. Just came of 13 days of nothing but Dex. Still have my ups and downs of no drugs. But the Saturday, Sunday and Monday were great. Will have to see what my days will bring with only having Darzalex every month.
Today is my 2 year birthday. Yep, I am 2. Been 2 years, November 14th, since my transplant. Pulled all those stem cells out a few days before, cleansed them and on the 14th put them back. It's been 2 years and almost 4 months we have been fighting this ugly, incurable disease. Fighting we have been. Through my ups and downs. Through my tears and fears. Through my hopes and prayers. Through my family and friends support and prayers. Through my chemo treatments and radiation treatments. Through my Pet Scans, MRIs, X-rays, Cat Scans. Through my doctor appointments, emails to my oncology team, phone calls to the team. Through my bone marrow biopsies, Myeloma biopsies, lab draws, port insertion. Through my days of fatigue, mood swings and more tears. Through all this and more with my wonderful, supportive care beside me. Without Bill I would not have been able to get through my fighting this disease. And continue fighting we well as some of these "throughs" will continue. Fight we must until a cure is found. Through our continual days of treatments etc, we must fight. And we will fight.
So several weeks ago while stopped for a red light on the way to the Cancer Center, I watched as a guy on his cell phone reading a text I guess, walked across the street. I continued to watch him as he stepped up on the sidewalk. He walked about 2 feet still reading something on his phone and ran right in to a pole. This pole was even painted yellow. It was a great way to make my day.
My quote is one that I stole from a friend's FB post. Thanks Nancy.
Quote:
Worry is a conversation you have with yourself about things you can not change. Prayer is a conversation you have with God about things he can change.
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