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.
Thursday, December 27, 2018
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.
Wednesday, November 7, 2018
Sandbox.
Last Tuesday, October 30th was my last treatment of Darzalex, for 13 days. Last Wednesday, October 31st was my last day of Kyprolis. Had Zometa drip also. Dex was taken on the 30th and will continue to be taken every Tuesday, treatment or not. Thursday didn't feel too bad. Friday was my normal fatigued day but had some things to do so push it aside as best as I could. Saturday during the day showed some fatigue but felt better. Was able to do dinner and "dimes" with the Domer's and Tremaines. Fun times. Sunday was another fatigued day. Monday, I spent the better part of the day with Mom. Tuesday, Sandy and I did a bit of shopping and I mean I bit. Got to Staples. Lunch was great though. Then fatigue hit again. Sandy and Denny have been in FL the last 3 weeks. Sorry they had to be here during treatment weeks. But that's pretty much our life anymore. Here for a bit of my 13 days off but not my feel real good days. They go home on Friday. Then my brother Rick, my niece Marcy and great niece Aubrey come for a 3 day visit. Excited to see them and especially my newest great niece. Will have a few more days off and then on the 13th, Darzalex is back. But good thing is I will not have another treatment of that until December. Kyprolis will continue. Dex will continue.
Here are a few things I have been wanting to post about for some time now. Things that make up my life that not everyone understands. My meds and how they affect me, fatigued, chemo brain. I have been reading articles on them and they are real. I get so fatigued at the weirdest times. And it doesn't always happen during treatment weeks. This may be boring to read but something else I need to write about our life with Multiple Myeloma.
Fatigue can affect the quality of life for years according to an article I recently read. Continuing on, there are many factors that can cause fatigue, stress, anemia, dehydration, sleep disorders, diet, depression. Physical activity can help reduce fatigue like yoga. Fatigue ranks high on the list of most cancer complaints. My personal fatigue seems to be worse on Fridays of my treatments. But it does hit me anytime after that when it wants to. And when it hits, I am done. Can't go anymore. So I just go lay down for an hour or two. Helps. Try to work through some of those days but doesn't always cooperate. Our life with Multiple Myeloma.
My meds cause several side effects too. These various drugs make me up, make me down, make me tired, make me hyper, make angry at things that are very minute, make me talk a lot (just ask Bill or Michelle), make me cry alone, make me snap at Bill and others, keep me up half the night, make my fingers and feet numb, make me drop things, make me feel like I am walking on golf balls, make me have spasms in my toes, fingers and calves. Just to mention a few. These are also things that not everyone can understand. Our life with Multiple Myeloma.
I get so frustrated when I am trying to think of a word and can't. Frustrated when I can't recall details. Frustrated when I can't remember something from the past or recent. I have always had a pretty good memory of things in the past. But boy, not so much anymore. I know some of you say that age is a factor but I am not buying that. I know it's chemo brain and I know this is real. Articles say this type of cognitive impairment. Chemo brain or chemo fog can start during or just after cancer treatment. Common systems include forgetfulness, difficulty concentrating or recall details or words and trouble multitasking. These cognitive challenges that arise during a cancer journey can be frustrating. Researchers are aiming to find out about the cause and treatment of chemo brain. I don't have all the systems of the impairments, thank God. My most common ones that chemo brain is causing are my not being to remember words when I am speaking, not remembering things from the past and not being able to recall details (like a recipe I have used for years). Our life with Multiple Myeloma.
Just wanted to put this out there for you all to see and try to understand what goes on in our life with Multiple Myeloma. Not seeking sympathy. Just want you to understand if you have been the brunt of some of my moods etc. Not the same me of several years ago and not the same me I was even six months ago. Life happens. Myeloma changes you through meds and side effects. So glad I have my Myeloma support group. They have been there, some still there, done that and understand. Our life with Multiple Myeloma.
Our support group leader, Ken, is a great guy. Along with Arlene, he plans for our meetings speakers, has water and tea along with our sponsored meals, has thank you, birthday, sympathy cards available for signatures each week as needed, keeps us rolling along to get us cleaned up and out of the church at our scheduled time. All this and more each month. And you know he and Arlene has duped me as another co-chair. Talking with Ken today to prepare for my first meeting to chair, he told me something one of his bosses said a while back. This boss did not micro manage and was a good boss to work for as long as you were getting your work done. But if that boss was planning something and someone was pushing in to those plans that wasn't wanted at the time, the boss would say, " I am not going to let someone get in to my sandbox!" Don't need it or you. Makes sense to me. How about you?? Love my support group and my co-chairs.
Quote:
Trust me, my chemo brain, fatigue and side effects are more frustrating to me than they are to you.
Last Tuesday, October 30th was my last treatment of Darzalex, for 13 days. Last Wednesday, October 31st was my last day of Kyprolis. Had Zometa drip also. Dex was taken on the 30th and will continue to be taken every Tuesday, treatment or not. Thursday didn't feel too bad. Friday was my normal fatigued day but had some things to do so push it aside as best as I could. Saturday during the day showed some fatigue but felt better. Was able to do dinner and "dimes" with the Domer's and Tremaines. Fun times. Sunday was another fatigued day. Monday, I spent the better part of the day with Mom. Tuesday, Sandy and I did a bit of shopping and I mean I bit. Got to Staples. Lunch was great though. Then fatigue hit again. Sandy and Denny have been in FL the last 3 weeks. Sorry they had to be here during treatment weeks. But that's pretty much our life anymore. Here for a bit of my 13 days off but not my feel real good days. They go home on Friday. Then my brother Rick, my niece Marcy and great niece Aubrey come for a 3 day visit. Excited to see them and especially my newest great niece. Will have a few more days off and then on the 13th, Darzalex is back. But good thing is I will not have another treatment of that until December. Kyprolis will continue. Dex will continue.
Here are a few things I have been wanting to post about for some time now. Things that make up my life that not everyone understands. My meds and how they affect me, fatigued, chemo brain. I have been reading articles on them and they are real. I get so fatigued at the weirdest times. And it doesn't always happen during treatment weeks. This may be boring to read but something else I need to write about our life with Multiple Myeloma.
Fatigue can affect the quality of life for years according to an article I recently read. Continuing on, there are many factors that can cause fatigue, stress, anemia, dehydration, sleep disorders, diet, depression. Physical activity can help reduce fatigue like yoga. Fatigue ranks high on the list of most cancer complaints. My personal fatigue seems to be worse on Fridays of my treatments. But it does hit me anytime after that when it wants to. And when it hits, I am done. Can't go anymore. So I just go lay down for an hour or two. Helps. Try to work through some of those days but doesn't always cooperate. Our life with Multiple Myeloma.
My meds cause several side effects too. These various drugs make me up, make me down, make me tired, make me hyper, make angry at things that are very minute, make me talk a lot (just ask Bill or Michelle), make me cry alone, make me snap at Bill and others, keep me up half the night, make my fingers and feet numb, make me drop things, make me feel like I am walking on golf balls, make me have spasms in my toes, fingers and calves. Just to mention a few. These are also things that not everyone can understand. Our life with Multiple Myeloma.
I get so frustrated when I am trying to think of a word and can't. Frustrated when I can't recall details. Frustrated when I can't remember something from the past or recent. I have always had a pretty good memory of things in the past. But boy, not so much anymore. I know some of you say that age is a factor but I am not buying that. I know it's chemo brain and I know this is real. Articles say this type of cognitive impairment. Chemo brain or chemo fog can start during or just after cancer treatment. Common systems include forgetfulness, difficulty concentrating or recall details or words and trouble multitasking. These cognitive challenges that arise during a cancer journey can be frustrating. Researchers are aiming to find out about the cause and treatment of chemo brain. I don't have all the systems of the impairments, thank God. My most common ones that chemo brain is causing are my not being to remember words when I am speaking, not remembering things from the past and not being able to recall details (like a recipe I have used for years). Our life with Multiple Myeloma.
Just wanted to put this out there for you all to see and try to understand what goes on in our life with Multiple Myeloma. Not seeking sympathy. Just want you to understand if you have been the brunt of some of my moods etc. Not the same me of several years ago and not the same me I was even six months ago. Life happens. Myeloma changes you through meds and side effects. So glad I have my Myeloma support group. They have been there, some still there, done that and understand. Our life with Multiple Myeloma.
Our support group leader, Ken, is a great guy. Along with Arlene, he plans for our meetings speakers, has water and tea along with our sponsored meals, has thank you, birthday, sympathy cards available for signatures each week as needed, keeps us rolling along to get us cleaned up and out of the church at our scheduled time. All this and more each month. And you know he and Arlene has duped me as another co-chair. Talking with Ken today to prepare for my first meeting to chair, he told me something one of his bosses said a while back. This boss did not micro manage and was a good boss to work for as long as you were getting your work done. But if that boss was planning something and someone was pushing in to those plans that wasn't wanted at the time, the boss would say, " I am not going to let someone get in to my sandbox!" Don't need it or you. Makes sense to me. How about you?? Love my support group and my co-chairs.
Quote:
Trust me, my chemo brain, fatigue and side effects are more frustrating to me than they are to you.
Wednesday, October 31, 2018
Tucker.
Yesterday, October 30th, was my final every two weeks of Darzalex. Starts once a month in November. Still have to have the Kyprolis chemo drip twice a week for 3 weeks and then one week off. My 13 days of no drugs but Dex. 13 days to start to feel better and then, here we go again. At least I won't be doing the Darzalex so much. Today, October 31st (happy anniversary Sandy and Denny), I had my Kyprolis chemo drip and my Zometa ( that's once every 3 months for bone strength). Of course, my Dex was on the hyper side today so I dressed as a gypsy and we went over to Michelle and Gery's for chicken dinner and to help hand out candy. We had a whooping 8 kids. Filled their bags full of candy. The company was great though.
My side effects this time was a little more than has been in the past with my Darzalex. Had those shooting pains from the middle of my forehead (fourth head according to Kerri) down to behind my left eye. And at times, below my left eye. Seem like sinus areas maybe. I did report it to my oncology nurse today. Have been using some of my stress relief oil in those areas. Also, have a rash, as usual, but seemed to be a lot brighter. And of course, my Dex had me up until 12:30 last night and awake again at 6:45. I think I may crash here soon but don't really feel tired yet. Tomorrow I hope to have a stay at home day. I know Friday will be one. Then dimes and dinner at the Domer's. They are here for 3 weeks this time. So glad!!!!
Since Gery and Michelle had to put Murphy down, there was an emptiness in their home. And especially for Gery. Murphy was his buddy. Well, need I say, they found another love. Rescue puppy. Beautiful black lab, Brittney spaniel mix according to the vet. Meet Tucker. He is a real sweetheart and after a few days, fit right into their family. And of course, Bill once again has a dog to help spoil. Welcome to the neighborhood Tucker.
Quote:
Being a caregiver to a spouse with cancer is like getting on a long roller coaster ride.
Yesterday, October 30th, was my final every two weeks of Darzalex. Starts once a month in November. Still have to have the Kyprolis chemo drip twice a week for 3 weeks and then one week off. My 13 days of no drugs but Dex. 13 days to start to feel better and then, here we go again. At least I won't be doing the Darzalex so much. Today, October 31st (happy anniversary Sandy and Denny), I had my Kyprolis chemo drip and my Zometa ( that's once every 3 months for bone strength). Of course, my Dex was on the hyper side today so I dressed as a gypsy and we went over to Michelle and Gery's for chicken dinner and to help hand out candy. We had a whooping 8 kids. Filled their bags full of candy. The company was great though.
My side effects this time was a little more than has been in the past with my Darzalex. Had those shooting pains from the middle of my forehead (fourth head according to Kerri) down to behind my left eye. And at times, below my left eye. Seem like sinus areas maybe. I did report it to my oncology nurse today. Have been using some of my stress relief oil in those areas. Also, have a rash, as usual, but seemed to be a lot brighter. And of course, my Dex had me up until 12:30 last night and awake again at 6:45. I think I may crash here soon but don't really feel tired yet. Tomorrow I hope to have a stay at home day. I know Friday will be one. Then dimes and dinner at the Domer's. They are here for 3 weeks this time. So glad!!!!
Since Gery and Michelle had to put Murphy down, there was an emptiness in their home. And especially for Gery. Murphy was his buddy. Well, need I say, they found another love. Rescue puppy. Beautiful black lab, Brittney spaniel mix according to the vet. Meet Tucker. He is a real sweetheart and after a few days, fit right into their family. And of course, Bill once again has a dog to help spoil. Welcome to the neighborhood Tucker.
Quote:
Being a caregiver to a spouse with cancer is like getting on a long roller coaster ride.
Wednesday, October 24, 2018
Huskies.
Last week I had my treatment of Darzalex on Tuesday, October 16th along with my Kyprolis drip. Wednesday, October 17th was my Kyprolis drip. Had Myeloma labs drawn on the 16th. Then on October 18th, I had my Pet Scan done. Not that I remember a lot of it. Slept through it and slept most of the day away once home. Gotta love Ativan. This week was only my Kyprolis. Yesterday, October 23rd and again today, October 24th. Both treatments went smoothly. Yesterday's a bit longer because of labs needed to check my platelets and bilirubin. Bilirubin was a bit high but not high enough to contact Dr. Sarriera for approval to administer my chemo. Today, no labs needed.
Also, today, October 24th was our appointment with Dr. Sarriera to review the results of my Pet Scan and Myeloma labs. Labs all good. M-spike is 0.1 and my light chains are up and down (but he said normal for me). Then we discussed my Pet Scan that I had last Thursday, October 18th. There is no new Myeloma from the top of my head to the bottom of my feet. Lesions that were seen are all inactive. Wonderful. Great. But as always, there is a however. But not a huge however. One that Bill and I are accepting as not a major downer. The soft tissue by my thoracic spine that was discovered several months ago to be Myeloma, has not fully disappeared. It's being attacked and is shrinking with my treatments but more treatments needed to dissipate this small mass of soft tissue. It is now very minute in size according to Dr. Sarriera. I was a little disappointed because I wanted him to say it was gone. But is really good to hear my treatments are working. We will take this and will have happy holidays this year.
I will continue to have the Kyprolis twice a week for 3 weeks on and one week off. He said this will be for a year and then maybe once a week for 3 weeks on and one week off. Darzalex will be once a month forever. We will repeat the Pet Scan in six months. And I will see him at the end of November. Bill asked again about the Dex. Dr. Sarriera asked if it was bothersome. Bill replied that its not for her but for him. We got a good laugh about that. Dr. Sarriera explained that Dex is a big part of the treatments for Myeloma. We will leave as is. We had cut the dosage down several weeks ago.
All and all this is good news and Dr. Sarriera is happy with what he is seeing. I know Bill is too and I am trying to also. Takes me longer to accept things as I deal with this in my mind every day. Try not to but it's not easy not to. Just want to be done. 2 1/2 years. Just want to be done. Will be 2 years November 14th that I had my transplant. Just want to be done. Oh, did I tell you that I am on Dex and my emotions are showing. :0
Bill and I have been watching Kristopher's home football games live on You Tube on Friday nights. We pulled his game up last Friday on You Tube and settled in for a fun night watching our grandson play football in Colorado from our seats in Florida. Watched the whole game with texting Kerri. Bill made a remark that the band was playing the same songs as the week before. Then they pulled the winning ticket for the 50/50 drawing, same name and number as the week before. We remarked on that. Then the announcer did a shout out to Bill and I watching our grandson Kristopher Aguirre playing football from our home in Florida. Same as he did the week before. Kerri text asking if we saw that play or that play. We did. At the end of the game, I text her saying that it was a great game and the score was the same as the week before, 42 - 7. Okay, you all know where this is going. She text - huh, the score was 12-7. Well, we were actually watching the previous weeks game again. Duh. We all got a good laugh about that. Bill and I did watch the replay on You Tube of the right game the next day. Go Huskies.
Quote:
Every day I challenge this cancer and survive is a victory for me.
Last week I had my treatment of Darzalex on Tuesday, October 16th along with my Kyprolis drip. Wednesday, October 17th was my Kyprolis drip. Had Myeloma labs drawn on the 16th. Then on October 18th, I had my Pet Scan done. Not that I remember a lot of it. Slept through it and slept most of the day away once home. Gotta love Ativan. This week was only my Kyprolis. Yesterday, October 23rd and again today, October 24th. Both treatments went smoothly. Yesterday's a bit longer because of labs needed to check my platelets and bilirubin. Bilirubin was a bit high but not high enough to contact Dr. Sarriera for approval to administer my chemo. Today, no labs needed.
Also, today, October 24th was our appointment with Dr. Sarriera to review the results of my Pet Scan and Myeloma labs. Labs all good. M-spike is 0.1 and my light chains are up and down (but he said normal for me). Then we discussed my Pet Scan that I had last Thursday, October 18th. There is no new Myeloma from the top of my head to the bottom of my feet. Lesions that were seen are all inactive. Wonderful. Great. But as always, there is a however. But not a huge however. One that Bill and I are accepting as not a major downer. The soft tissue by my thoracic spine that was discovered several months ago to be Myeloma, has not fully disappeared. It's being attacked and is shrinking with my treatments but more treatments needed to dissipate this small mass of soft tissue. It is now very minute in size according to Dr. Sarriera. I was a little disappointed because I wanted him to say it was gone. But is really good to hear my treatments are working. We will take this and will have happy holidays this year.
I will continue to have the Kyprolis twice a week for 3 weeks on and one week off. He said this will be for a year and then maybe once a week for 3 weeks on and one week off. Darzalex will be once a month forever. We will repeat the Pet Scan in six months. And I will see him at the end of November. Bill asked again about the Dex. Dr. Sarriera asked if it was bothersome. Bill replied that its not for her but for him. We got a good laugh about that. Dr. Sarriera explained that Dex is a big part of the treatments for Myeloma. We will leave as is. We had cut the dosage down several weeks ago.
All and all this is good news and Dr. Sarriera is happy with what he is seeing. I know Bill is too and I am trying to also. Takes me longer to accept things as I deal with this in my mind every day. Try not to but it's not easy not to. Just want to be done. 2 1/2 years. Just want to be done. Will be 2 years November 14th that I had my transplant. Just want to be done. Oh, did I tell you that I am on Dex and my emotions are showing. :0
Bill and I have been watching Kristopher's home football games live on You Tube on Friday nights. We pulled his game up last Friday on You Tube and settled in for a fun night watching our grandson play football in Colorado from our seats in Florida. Watched the whole game with texting Kerri. Bill made a remark that the band was playing the same songs as the week before. Then they pulled the winning ticket for the 50/50 drawing, same name and number as the week before. We remarked on that. Then the announcer did a shout out to Bill and I watching our grandson Kristopher Aguirre playing football from our home in Florida. Same as he did the week before. Kerri text asking if we saw that play or that play. We did. At the end of the game, I text her saying that it was a great game and the score was the same as the week before, 42 - 7. Okay, you all know where this is going. She text - huh, the score was 12-7. Well, we were actually watching the previous weeks game again. Duh. We all got a good laugh about that. Bill and I did watch the replay on You Tube of the right game the next day. Go Huskies.
Quote:
Every day I challenge this cancer and survive is a victory for me.
Sunday, October 14, 2018
Damn.
Made a few changes to my last post. I had all the dates for October instead of September. Duh.
We have been on a 10 day of 12 vacation of no chemo or Dex (I decided not to take the Dex on my own). Nothing except my Lyrica, Acyclovir, blood pressure/water pill and vitamins. What a relief for me and Bill. It will all start all over again Tuesday.
During this time of no drugs, Bill and I took a mini vacation. Off to St. Augustine for 3 days. Much needed vacation for both of us. A get away from our lives of pills, chemo, trips to the Cancer Center, my side effects of headaches, rashes, fatigue, just not feeling good.
What a great time we had despite the rain. The dates we reserved several weeks ago were the days that Michael (hurricane) decided to hit the FL panhandle and move on to several other states. We were very lucky in our area to only have rain. We pray for those that lost their homes and the ones that lost their lives. Bill and I put "cancer" out of our minds and really enjoyed our stay. We really want to go back to St. Augustine. Beautiful place and full of history.
During my last treatment, we had a visitor. Desiree. She came to my treatment room to tell us that she will no longer be Dr. Sarriera's nurse. What??? No!!! She is taking on a new position that involves being a patient's advocate. Phew!! I thought she was going to tell us she was leaving the Cancer Center. Will be in the same office area so will still get a chance to see her occasionally. Everyone knows how I feel about Desiree. Will miss her. :( It was so "her" coming to tell us in person. So Desiree!
Tuesday, October 16th, will be my Darzalex treatment along with Kyprolis and Dex. Wednesday, October 17th, Kyprolis treatment. Thursday, October 18th, Pet Scan. Much waited on Pet Scan. This will be a full body scan to make sure no Myeloma is lurking around. Plus, to make sure my meds have dissipated the mass that was found near my spine. Very important Pet Scan. My appointment will Dr. Sarriera isn't until October 24th. Once the results are in my Cancer Center portal, I will call Dr. Sarriera to review the results. Asking for lots of prays that this scan shows nothing!!!
One of the things I wanted to do while in St. Augustine was go to the Scarlett O'Hara's restaurant. Gone With the Wind is my all time favorite movie. I am not sure how many times I have watched it. I even dressed as Scarlett for Halloween one year. So we went and were not disappointed. Food was great and the decor of pictures, signs, paintings depicting Scarlett and Rhett was awesome. Favorite were the signs for the restaurant; Scarlett O'Hara's - Frankly, I don't give a damn.
Quote:
Use the bricks that are thrown at you to build a strong foundation.
Made a few changes to my last post. I had all the dates for October instead of September. Duh.
We have been on a 10 day of 12 vacation of no chemo or Dex (I decided not to take the Dex on my own). Nothing except my Lyrica, Acyclovir, blood pressure/water pill and vitamins. What a relief for me and Bill. It will all start all over again Tuesday.
During this time of no drugs, Bill and I took a mini vacation. Off to St. Augustine for 3 days. Much needed vacation for both of us. A get away from our lives of pills, chemo, trips to the Cancer Center, my side effects of headaches, rashes, fatigue, just not feeling good.
What a great time we had despite the rain. The dates we reserved several weeks ago were the days that Michael (hurricane) decided to hit the FL panhandle and move on to several other states. We were very lucky in our area to only have rain. We pray for those that lost their homes and the ones that lost their lives. Bill and I put "cancer" out of our minds and really enjoyed our stay. We really want to go back to St. Augustine. Beautiful place and full of history.
During my last treatment, we had a visitor. Desiree. She came to my treatment room to tell us that she will no longer be Dr. Sarriera's nurse. What??? No!!! She is taking on a new position that involves being a patient's advocate. Phew!! I thought she was going to tell us she was leaving the Cancer Center. Will be in the same office area so will still get a chance to see her occasionally. Everyone knows how I feel about Desiree. Will miss her. :( It was so "her" coming to tell us in person. So Desiree!
Tuesday, October 16th, will be my Darzalex treatment along with Kyprolis and Dex. Wednesday, October 17th, Kyprolis treatment. Thursday, October 18th, Pet Scan. Much waited on Pet Scan. This will be a full body scan to make sure no Myeloma is lurking around. Plus, to make sure my meds have dissipated the mass that was found near my spine. Very important Pet Scan. My appointment will Dr. Sarriera isn't until October 24th. Once the results are in my Cancer Center portal, I will call Dr. Sarriera to review the results. Asking for lots of prays that this scan shows nothing!!!
One of the things I wanted to do while in St. Augustine was go to the Scarlett O'Hara's restaurant. Gone With the Wind is my all time favorite movie. I am not sure how many times I have watched it. I even dressed as Scarlett for Halloween one year. So we went and were not disappointed. Food was great and the decor of pictures, signs, paintings depicting Scarlett and Rhett was awesome. Favorite were the signs for the restaurant; Scarlett O'Hara's - Frankly, I don't give a damn.
Quote:
Use the bricks that are thrown at you to build a strong foundation.
Wednesday, September 26, 2018
Murphy.
I had my Daralex last Tuesday, September 18tth, along with my day 1 Kyprolis after having 12 days off. Was at the Cancer Center from 8 until about 3. A little faster because my labs came back within the range needed. Then day 2 of Kyprolis on the 19th. Had a headache the night of my Daralex. Dex had me up Tuesday night until 1. Was fatigued after my treatments last week. Felt okay by Saturday.
Yesterday, September 25th, had my chemo, Kyprolis and Dex. Was up till about 12. Mild headache. Today, Septemberr 26th, Kyprolis day 2. Then my appointment with Dr. Sarriera.
First in came his intern which we have meet with before. He went through some questions that we had so he could talk to Dr. Sarriera before he came in. Sort of like Abbey does at times. We reviewed my labs. He explained until my M-spike returns to 0.0 and my monoclonal immunoglobulin (the IgG light chain) hits the negative range, Myeloma is still there but very minute. Few more questions and he went to get Dr. Sarriera. Tried to have him talk to Dr. Sarriera to take me off those humongous potassium pills. No go!
Dr. Sarriera was happy with my labs even with the M-spike at 0.1. What we are waiting on is the results of my Pet Scan. Praying the mass beside my spine is gone and nothing else shows up. That will be scheduled before my next appointment with him on the 24th of October. Hospital will call me to make an appointment. Will continue with my every other week of Darzalex through the end of October. Also, the twice weekly Kyprolis treatments. These appointments are already scheduled. Once I have my appointment with Dr. Sarriera on the 24th, he will schedule my November appointments. Providing positive results from my Pet Scan, my schedule with be as follows: Darzalex once a month. Kyprolis will continue to be 2 times a week for 3 weeks and one week off for another 6 months (6 cycles). Then hopefully, we will go to once a week with the Kyprolis for 3 weeks and one week off. Also, mentioned that he may be able to take me off Dex as well. Started having some pains in my legs when rubbing them. Feels like they are bruised in certain spots. Worried me. Dr. Sarriera assured me that it was nothing to do with Myeloma but feels it's neuropathy related. Yeah, neuropathy. Told him we decided to use some essential oils for the neuropathy. He was okay with that decision. Still will take the Lyrica too. Dr. Sarriera told us to stay possible and again was happy where I am.
Bill and I are happy with the appointment today but have been at this point before and been slapped down. So we will pray for good results from the Pet scan. Waiting is the hardest but Dr. Sarriera wants to have as many treatments of Darzalex and Kyprolis as possible before it is scheduled. So wait we must. Pray we must. Hope we must.
Today was a very sad day for our friends Gery and Michelle. They had to put down their 14 year old dog Murphy. He was Gery's constant companion. He was having some problems this morning and Gery took him to the vet not expecting to leave without him. His liver was very enlarged and pushing on other organs. Nothing they could do except medicate him to keep him comfortable. Not a way of life Gery or Michelle wanted for Murphy. Gery made the right decision. Bill and I will miss him too. Especially Bill. He was Bill's dog that lived across the street. Barked when he saw Bill's head above our wall. Got all excited when he saw Bill coming across the street to visit. So Murphy, we will miss you but know that you have crossed the rainbow bridge and no longer in pain.
Quote:
Let your faith be bigger than your fear.
I had my Daralex last Tuesday, September 18tth, along with my day 1 Kyprolis after having 12 days off. Was at the Cancer Center from 8 until about 3. A little faster because my labs came back within the range needed. Then day 2 of Kyprolis on the 19th. Had a headache the night of my Daralex. Dex had me up Tuesday night until 1. Was fatigued after my treatments last week. Felt okay by Saturday.
Yesterday, September 25th, had my chemo, Kyprolis and Dex. Was up till about 12. Mild headache. Today, Septemberr 26th, Kyprolis day 2. Then my appointment with Dr. Sarriera.
First in came his intern which we have meet with before. He went through some questions that we had so he could talk to Dr. Sarriera before he came in. Sort of like Abbey does at times. We reviewed my labs. He explained until my M-spike returns to 0.0 and my monoclonal immunoglobulin (the IgG light chain) hits the negative range, Myeloma is still there but very minute. Few more questions and he went to get Dr. Sarriera. Tried to have him talk to Dr. Sarriera to take me off those humongous potassium pills. No go!
Dr. Sarriera was happy with my labs even with the M-spike at 0.1. What we are waiting on is the results of my Pet Scan. Praying the mass beside my spine is gone and nothing else shows up. That will be scheduled before my next appointment with him on the 24th of October. Hospital will call me to make an appointment. Will continue with my every other week of Darzalex through the end of October. Also, the twice weekly Kyprolis treatments. These appointments are already scheduled. Once I have my appointment with Dr. Sarriera on the 24th, he will schedule my November appointments. Providing positive results from my Pet Scan, my schedule with be as follows: Darzalex once a month. Kyprolis will continue to be 2 times a week for 3 weeks and one week off for another 6 months (6 cycles). Then hopefully, we will go to once a week with the Kyprolis for 3 weeks and one week off. Also, mentioned that he may be able to take me off Dex as well. Started having some pains in my legs when rubbing them. Feels like they are bruised in certain spots. Worried me. Dr. Sarriera assured me that it was nothing to do with Myeloma but feels it's neuropathy related. Yeah, neuropathy. Told him we decided to use some essential oils for the neuropathy. He was okay with that decision. Still will take the Lyrica too. Dr. Sarriera told us to stay possible and again was happy where I am.
Bill and I are happy with the appointment today but have been at this point before and been slapped down. So we will pray for good results from the Pet scan. Waiting is the hardest but Dr. Sarriera wants to have as many treatments of Darzalex and Kyprolis as possible before it is scheduled. So wait we must. Pray we must. Hope we must.
Today was a very sad day for our friends Gery and Michelle. They had to put down their 14 year old dog Murphy. He was Gery's constant companion. He was having some problems this morning and Gery took him to the vet not expecting to leave without him. His liver was very enlarged and pushing on other organs. Nothing they could do except medicate him to keep him comfortable. Not a way of life Gery or Michelle wanted for Murphy. Gery made the right decision. Bill and I will miss him too. Especially Bill. He was Bill's dog that lived across the street. Barked when he saw Bill's head above our wall. Got all excited when he saw Bill coming across the street to visit. So Murphy, we will miss you but know that you have crossed the rainbow bridge and no longer in pain.
Quote:
Let your faith be bigger than your fear.
Thursday, September 6, 2018
Joanie.
This week is so mixed up for me with the holiday. My schedule of Tuesday and Wednesday treatments was thrown off to Wednesday and Thursday treatments. So this is how it went this week. Tuesday I made an appointment for Mom to get her nails done. Told her I would pick her up, we would have lunch, she would have her nails done and then we would go to Walmart for a few things she needed. Well, not!! I got "the pain" in my side that I have had for years. No MRI, CT scan has ever been found any problems. This pain was probably the worse I have had. Usually if I lay down, it will subside. This one took a while longer to quit. Had to cancel all of the above with Mom. I made an appointment with a gastrologist. Stayed home instead and actually spent most of the day in my sewing room. My room that keeps me sane some days. Even if I just sit there and look at my fabric stash, look at quilt patterns I want to make, look at the projects I have started and need to finish, just look around or just sit and stare. Weird huh? But my weird!!!
So yesterday, Wednesday the 5th, was my Darzalex day. Had to be there by 8. Took me back to the draw lab, accessed my port, good blood draw, drew my blood and sent to room 16 with Kelly. Well, I remember her from another time and knew she didn't have any bed side manner. Straight faced always. No happy there. Labs back around 9:30. Bilirubin 1.2 (great). Platelets 108 (great increasing). No need to contact Dr. Sarriera to begin. Premeds of Tylenol and Benadryl pills along with a Dex drip given. Darzalex and Kyprolis meds mixed and ready about 10:00. Dex finished and Kyprolis started. A little wait to start Darzalex. Down hill from there. Kelly started the Darzalex at 100 mg. I did ask and she said it was in the protocol. Should have questioned more. It was a 1/2 hour drip. She came in after that half hour and did my vitals. Blood pressure was up. Started to set my next drip at 150. Bill questioned as to why. It was alway started at 25 or 50 during my previous Darzalex treatments. Kelly move it back to 50. Blood pressure down. Then half hour later moved it back up to 100. Then she went to lunch. Stephanie took over for her. Bill told her that we were not understanding why Kelly was doing the treatment as she was. She checked and showed that Kelly was following the drug protocol and not MY protocol. Stephanie review MY protocol and made a note saying "review patient's protocol when administrating Darzalex. Kelly came back and asked what was going on and Stephanie explained it to her. No emotions from her. Finally got through the treatment with the adjustments Stephanie made. I did say to Kelly that I sorry there was such a mix up and I didn't want to upset her. Again, not even a I am sorry too. No emotions. Funny how we have never had any problems with the order of things for several months and with a lot of different oncology nurses. Good thing Bill is on top of it all with me fighting in the background at times. Advocates together.
Today, Thursday the 6th, I had my second infusion of Kyprolis. In and out in no time. Emma was our oncology nurse today. Emma first asked Bill how his leg was. She seems to love Bill's sense of humor. We love Emma.
No treatments now for a week and a half. Actually nothing but still need to take my Dex on Tuesday. Start back on treatments September 18th. I love these breaks even though I may have some coming down off the drugs minor side effects. I deal with these because this is our time of no drugs but Dex. Twelve days of freedom. Of course, these are weeks we have to make appointments for other stuff and even take a few days of nothing but relaxing and being lazy.
Known as Joan to most but to me she will always be Joanie. Joanie and Harry are our friends from the Army. Our friends from Germany and long time ago. We still keep in contact even if it's a month or so in between. I know I have blogged about them before but doing it again. Tonight Joanie and I had a nice long, needed talk. Joanie is a breast cancer survivor and is now a care giver to Harry. He has an immune disorder. Please keep them in your prayers. Harry has had a rough month with a problem with his leg cause by an accident with a ladder. Has been in the hospital, had a MRI, leg bruised from ankle to his pelvis, hematoma, leg split apart and bled profusely. Is now losing weight and has no energy. On their way to John Hopkins tomorrow to see his doctor there. Pray she can help. Joanie, I hope I got all this right.
Quote:
What lies before us and what lies behind us are small matters compared to what lies within us.
This week is so mixed up for me with the holiday. My schedule of Tuesday and Wednesday treatments was thrown off to Wednesday and Thursday treatments. So this is how it went this week. Tuesday I made an appointment for Mom to get her nails done. Told her I would pick her up, we would have lunch, she would have her nails done and then we would go to Walmart for a few things she needed. Well, not!! I got "the pain" in my side that I have had for years. No MRI, CT scan has ever been found any problems. This pain was probably the worse I have had. Usually if I lay down, it will subside. This one took a while longer to quit. Had to cancel all of the above with Mom. I made an appointment with a gastrologist. Stayed home instead and actually spent most of the day in my sewing room. My room that keeps me sane some days. Even if I just sit there and look at my fabric stash, look at quilt patterns I want to make, look at the projects I have started and need to finish, just look around or just sit and stare. Weird huh? But my weird!!!
So yesterday, Wednesday the 5th, was my Darzalex day. Had to be there by 8. Took me back to the draw lab, accessed my port, good blood draw, drew my blood and sent to room 16 with Kelly. Well, I remember her from another time and knew she didn't have any bed side manner. Straight faced always. No happy there. Labs back around 9:30. Bilirubin 1.2 (great). Platelets 108 (great increasing). No need to contact Dr. Sarriera to begin. Premeds of Tylenol and Benadryl pills along with a Dex drip given. Darzalex and Kyprolis meds mixed and ready about 10:00. Dex finished and Kyprolis started. A little wait to start Darzalex. Down hill from there. Kelly started the Darzalex at 100 mg. I did ask and she said it was in the protocol. Should have questioned more. It was a 1/2 hour drip. She came in after that half hour and did my vitals. Blood pressure was up. Started to set my next drip at 150. Bill questioned as to why. It was alway started at 25 or 50 during my previous Darzalex treatments. Kelly move it back to 50. Blood pressure down. Then half hour later moved it back up to 100. Then she went to lunch. Stephanie took over for her. Bill told her that we were not understanding why Kelly was doing the treatment as she was. She checked and showed that Kelly was following the drug protocol and not MY protocol. Stephanie review MY protocol and made a note saying "review patient's protocol when administrating Darzalex. Kelly came back and asked what was going on and Stephanie explained it to her. No emotions from her. Finally got through the treatment with the adjustments Stephanie made. I did say to Kelly that I sorry there was such a mix up and I didn't want to upset her. Again, not even a I am sorry too. No emotions. Funny how we have never had any problems with the order of things for several months and with a lot of different oncology nurses. Good thing Bill is on top of it all with me fighting in the background at times. Advocates together.
Today, Thursday the 6th, I had my second infusion of Kyprolis. In and out in no time. Emma was our oncology nurse today. Emma first asked Bill how his leg was. She seems to love Bill's sense of humor. We love Emma.
No treatments now for a week and a half. Actually nothing but still need to take my Dex on Tuesday. Start back on treatments September 18th. I love these breaks even though I may have some coming down off the drugs minor side effects. I deal with these because this is our time of no drugs but Dex. Twelve days of freedom. Of course, these are weeks we have to make appointments for other stuff and even take a few days of nothing but relaxing and being lazy.
Known as Joan to most but to me she will always be Joanie. Joanie and Harry are our friends from the Army. Our friends from Germany and long time ago. We still keep in contact even if it's a month or so in between. I know I have blogged about them before but doing it again. Tonight Joanie and I had a nice long, needed talk. Joanie is a breast cancer survivor and is now a care giver to Harry. He has an immune disorder. Please keep them in your prayers. Harry has had a rough month with a problem with his leg cause by an accident with a ladder. Has been in the hospital, had a MRI, leg bruised from ankle to his pelvis, hematoma, leg split apart and bled profusely. Is now losing weight and has no energy. On their way to John Hopkins tomorrow to see his doctor there. Pray she can help. Joanie, I hope I got all this right.
Quote:
What lies before us and what lies behind us are small matters compared to what lies within us.
Friday, August 31, 2018
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."
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."
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!
Tuesday, July 24, 2018
Pay it Forward
Cycle 3, day 1 was today. Got labs drawn, in my room around 9. Oncology nurse today was Stephanie. Have had her before. Of course, as often as I go, I do get the same ones. Room was a large private one. Like them. Bill can stretch out. Labs back. Bilirubin was high and platelets low. Lab need approval to continue from Dr. Sarriera. Stephanie informed us no Kyprolis today. Dr. Sarriera on vacation and Dr. Landa didn't feel comfortable giving the go ahead to lower the dosage of the Kyprolis. Darazalex was okay to infuse. Bill and I questioned the decision. I have had higher bilirubin (today 1.7) and lower platelets (today 88). We said this could be seen in my records. Still no change in the decision from Dr. Landa. So tomorrow, I still keep my regular appointment for Kyprolis but will have labs drawn to see if my numbers changed. First for that as far as the labs go. We will see. Bill is still not happy with the way my visit went today. Kyprolis tomorrow. Just not sure yet.
Got my pre meds around 10:00. Started the Darzalex around 10:30. Eyes went closed around 11. Woke up for the hourly vitals and back out. And the great news was that my highest blood pressure was only 129/64. Will keep monitoring it at least once a day.
Tomorrow my beautiful, sweet Juliana heads home. I think she is ready. I know her momma is ready. I will miss her. I miss all my grandkids that do not live in FL. I will still have my sweet, beautiful Sasha and Ellie here. They are available for Didi hugs!!
I got a pedicure and manicure last Friday. While getting the pedicure, I met a great mother and her daughter. Daughter was telling me that her 89 year old grandmother was moving in with her and her fiancé soon. They were looking for a home with a split floor plan. Had look at 12 houses the day before and had 7 more to look later that day. We talked about the cost of the homes skyrocketing in this area. I told her we finally found a home with the split floor plan because my mom was going to move in with us but didn't happen. Talked about a house they liked but had so much work to do on it. But they really like it. Going to put an offer on it after looking at these next 7. Will deal with the upgrades as they can. She then ask why my mom didn't move in with us. I told her and she sat there for about another 1/2 hour. She asked a lot of questions about Myeloma. Listened as I told her. Asked more questions and listened. They finally left. My nail tech, Thu (pronounced two), told me that my pedicure and manicure was paid by Jessica. I just started to cry. What a wonderful thing she did. Fortunately, as I left, she and her mom were walking out of a restaurant. I was able to give her a hug and thank her. And I promised her I would Pay it Forward. This is long but I needed to share and mostly need to remember this.
Quote:
Be faithful in small things because it is in them your strength lies.
Cycle 3, day 1 was today. Got labs drawn, in my room around 9. Oncology nurse today was Stephanie. Have had her before. Of course, as often as I go, I do get the same ones. Room was a large private one. Like them. Bill can stretch out. Labs back. Bilirubin was high and platelets low. Lab need approval to continue from Dr. Sarriera. Stephanie informed us no Kyprolis today. Dr. Sarriera on vacation and Dr. Landa didn't feel comfortable giving the go ahead to lower the dosage of the Kyprolis. Darazalex was okay to infuse. Bill and I questioned the decision. I have had higher bilirubin (today 1.7) and lower platelets (today 88). We said this could be seen in my records. Still no change in the decision from Dr. Landa. So tomorrow, I still keep my regular appointment for Kyprolis but will have labs drawn to see if my numbers changed. First for that as far as the labs go. We will see. Bill is still not happy with the way my visit went today. Kyprolis tomorrow. Just not sure yet.
Got my pre meds around 10:00. Started the Darzalex around 10:30. Eyes went closed around 11. Woke up for the hourly vitals and back out. And the great news was that my highest blood pressure was only 129/64. Will keep monitoring it at least once a day.
Tomorrow my beautiful, sweet Juliana heads home. I think she is ready. I know her momma is ready. I will miss her. I miss all my grandkids that do not live in FL. I will still have my sweet, beautiful Sasha and Ellie here. They are available for Didi hugs!!
I got a pedicure and manicure last Friday. While getting the pedicure, I met a great mother and her daughter. Daughter was telling me that her 89 year old grandmother was moving in with her and her fiancé soon. They were looking for a home with a split floor plan. Had look at 12 houses the day before and had 7 more to look later that day. We talked about the cost of the homes skyrocketing in this area. I told her we finally found a home with the split floor plan because my mom was going to move in with us but didn't happen. Talked about a house they liked but had so much work to do on it. But they really like it. Going to put an offer on it after looking at these next 7. Will deal with the upgrades as they can. She then ask why my mom didn't move in with us. I told her and she sat there for about another 1/2 hour. She asked a lot of questions about Myeloma. Listened as I told her. Asked more questions and listened. They finally left. My nail tech, Thu (pronounced two), told me that my pedicure and manicure was paid by Jessica. I just started to cry. What a wonderful thing she did. Fortunately, as I left, she and her mom were walking out of a restaurant. I was able to give her a hug and thank her. And I promised her I would Pay it Forward. This is long but I needed to share and mostly need to remember this.
Quote:
Be faithful in small things because it is in them your strength lies.
Sunday, July 22, 2018
Juliana
Last treatment was July 10. We have been free from going to the Cancer Center, free from Darzalex and Kyprolis infusions and labs. Has been so nice. Still have to take the Dex. Had a few rough days after the July 10th Darzalex. Then I had days I was tired, have a mild headache but able to feel half way decent. Able to drive. Able to enjoy a game of "dimes" with Michelle and Gery. Able to go shopping. Able to get mom for a bit. Able to go to the grocery store by myself. Able to have a sleep over with my 3 granddaughters. Able to ignore or take a Tylenol for the headaches (mild compared to the others). Able to just feel decent. Able to get my blood pressure down. Able to be me.
Well, all this will end soon. I start my next rcycle of Darzalex this Tuesday, the 24th. I will also have my Kyprolis the 24th and the 25th. Filled in my calendar with my new schedule. It took me out till the middle of October. Darzalex ever other week and Kyprolis twice a week for 3 weeks and then off a week. So here we come Cancer Center, twice a week again.
Went to the airport to pick up Juliana on the 18th. She will be here until Wednesday the 25th. Dividing her time between here and Kristi's house. So glad that she was able to have some time to come visit. Sure wish I could have been able to take her to Disney. She really wanted to do that. Such a sweet granddaughter. Love her and my other grandkids so much.
Quote:
Cancer never takes a vacation.
Last treatment was July 10. We have been free from going to the Cancer Center, free from Darzalex and Kyprolis infusions and labs. Has been so nice. Still have to take the Dex. Had a few rough days after the July 10th Darzalex. Then I had days I was tired, have a mild headache but able to feel half way decent. Able to drive. Able to enjoy a game of "dimes" with Michelle and Gery. Able to go shopping. Able to get mom for a bit. Able to go to the grocery store by myself. Able to have a sleep over with my 3 granddaughters. Able to ignore or take a Tylenol for the headaches (mild compared to the others). Able to just feel decent. Able to get my blood pressure down. Able to be me.
Well, all this will end soon. I start my next rcycle of Darzalex this Tuesday, the 24th. I will also have my Kyprolis the 24th and the 25th. Filled in my calendar with my new schedule. It took me out till the middle of October. Darzalex ever other week and Kyprolis twice a week for 3 weeks and then off a week. So here we come Cancer Center, twice a week again.
Went to the airport to pick up Juliana on the 18th. She will be here until Wednesday the 25th. Dividing her time between here and Kristi's house. So glad that she was able to have some time to come visit. Sure wish I could have been able to take her to Disney. She really wanted to do that. Such a sweet granddaughter. Love her and my other grandkids so much.
Quote:
Cancer never takes a vacation.
Wednesday, July 11, 2018
Furs.
Yesterday, I had my last of the 8 weeks of Darzalex. Got at the Cancer Center around 8:20. Back to my room around 9:00 after accessing my port and drawing labs. Seemed to be running late. Chiara, my oncology nurse for the day was ready with my premeds. I told her that I usually do not get these until my labs come back. Need to see if all my numbers are okay to precede. And if I took them now, I would be out. We think she was new because several other nurses seemed to be "checking" on her. And I did not recognize that name. One that would be easy to remember. Labs came back okay. Bilirubin up some. Waited on Dr. Sarriera to approve to continue. Which he did. Started the Darzalex around 10:45. No Kyprolis this week. I was out about 11:15. Hourly vitals. All good. Until after the infusion was complete. Last blood pressure was super high for me 184/78. This all started around 4. At one point, the machine would inflate, deflate, inflate, deflate. Moved to other arm. Still high. Chiara would wait like 15 to 20 minutes, take again. Still very high. Not letting me go home. Headache starting. Chiara contacted the PA on duty several times for advice. Finally took pressure with a manual blood pressure cuff. Still high. Not going home. Decided to give me a Fioricet pill for the headache around 5. Waited until 5:30 for another reading. Redid with the manual cuff and was down to 147/74. Decided that I could go home but continue to take my pressure there. I did several time over the course of the night. Pressure was up at 11 so took another Fioricet. Down around 12:30. Finally fell asleep around 1ish.
Today was our appointment with Dr. Sarriera after my first 8 weeks of Darzalex. I thought I had off a week to start my every other week of the Darzalex. Nope, I am on my cycle 3 of Darzalex. They count 4 weeks as one cycle. Hence, cycle 3 to start July 17th. NOOO!!! Juliana to come in that day. Dr. Sarriera was very thoughtful of my needs to spend time with her and said I could take that week off and not start until July 24th. Juliana leaves on the 25th. Then Jakob and Audrey come July 27th for a week. I will not have a Darzalex treatment while they are here either. Worked out. I may have Kyprolis treatments but not sure yet. Thank you Dr. Sarriera.
Very concerning in today's appointment were my headaches and blood pressure. Dr. Sarriera had a fellowship intern with him today. They did some research on the net regarding headaches and the meds I am on. All of meds, of course, causes a certain percentage towards headaches. But even more concerning to them was my increasing blood pressure. Looked over past history and notice this seemed to be creeping up and up. Maybe the blood pressure that could be caused by the meds could be causing the headaches. So guess what, I am now adding a blood pressure pill to my regiment of meds. If this takes these headaches away, I will not complain. Of course I know that it may take time to achieve the intended effect. I have the Fioricet to fill in till then. Since these headaches seem to be mostly behind the eyes, Dr. Sarriera ordered a MRI to make sure there are not any Myeloma lytic lesions causing any other problems behind the eyes.
Other discussions. Our trip to Moffitt and how they are on the same page with Dr. Sarriera. Asked if there were other treatment plans if this Darazalex would not happen to work. He started to list off all these other drugs that could be used. His comment to me was that I have to be willing to keep an open mind. Told him it was hard at times; he understood. He is all for the Car_T trial if it opened up for me in the event of Darzalex failure. He felt my lab numbers looked good even though my M Spike that has been zero forever is elevated. Felt my light chains looked good. Darzalex causes some readings to be distorted. I will continue to take my Dex weekly even though I will not be having treatments. Bill was so happy about that. Next appointment to be with Abby on August 8th. Need to do Myeloma labs one week before. MRI is schedule for July 26th.
We pass this small store on the way to the Cancer Center that has had me baffled. The sign says "Cold Storage and Furs". So I am guessing since it doesn't get cold even here to wear a fur, that it is a place to visit so you can wear your fur?? This is Florida so could be.
Quote:
Everyday that I challenge this cancer and survive is a victory for me.
Yesterday, I had my last of the 8 weeks of Darzalex. Got at the Cancer Center around 8:20. Back to my room around 9:00 after accessing my port and drawing labs. Seemed to be running late. Chiara, my oncology nurse for the day was ready with my premeds. I told her that I usually do not get these until my labs come back. Need to see if all my numbers are okay to precede. And if I took them now, I would be out. We think she was new because several other nurses seemed to be "checking" on her. And I did not recognize that name. One that would be easy to remember. Labs came back okay. Bilirubin up some. Waited on Dr. Sarriera to approve to continue. Which he did. Started the Darzalex around 10:45. No Kyprolis this week. I was out about 11:15. Hourly vitals. All good. Until after the infusion was complete. Last blood pressure was super high for me 184/78. This all started around 4. At one point, the machine would inflate, deflate, inflate, deflate. Moved to other arm. Still high. Chiara would wait like 15 to 20 minutes, take again. Still very high. Not letting me go home. Headache starting. Chiara contacted the PA on duty several times for advice. Finally took pressure with a manual blood pressure cuff. Still high. Not going home. Decided to give me a Fioricet pill for the headache around 5. Waited until 5:30 for another reading. Redid with the manual cuff and was down to 147/74. Decided that I could go home but continue to take my pressure there. I did several time over the course of the night. Pressure was up at 11 so took another Fioricet. Down around 12:30. Finally fell asleep around 1ish.
Today was our appointment with Dr. Sarriera after my first 8 weeks of Darzalex. I thought I had off a week to start my every other week of the Darzalex. Nope, I am on my cycle 3 of Darzalex. They count 4 weeks as one cycle. Hence, cycle 3 to start July 17th. NOOO!!! Juliana to come in that day. Dr. Sarriera was very thoughtful of my needs to spend time with her and said I could take that week off and not start until July 24th. Juliana leaves on the 25th. Then Jakob and Audrey come July 27th for a week. I will not have a Darzalex treatment while they are here either. Worked out. I may have Kyprolis treatments but not sure yet. Thank you Dr. Sarriera.
Very concerning in today's appointment were my headaches and blood pressure. Dr. Sarriera had a fellowship intern with him today. They did some research on the net regarding headaches and the meds I am on. All of meds, of course, causes a certain percentage towards headaches. But even more concerning to them was my increasing blood pressure. Looked over past history and notice this seemed to be creeping up and up. Maybe the blood pressure that could be caused by the meds could be causing the headaches. So guess what, I am now adding a blood pressure pill to my regiment of meds. If this takes these headaches away, I will not complain. Of course I know that it may take time to achieve the intended effect. I have the Fioricet to fill in till then. Since these headaches seem to be mostly behind the eyes, Dr. Sarriera ordered a MRI to make sure there are not any Myeloma lytic lesions causing any other problems behind the eyes.
Other discussions. Our trip to Moffitt and how they are on the same page with Dr. Sarriera. Asked if there were other treatment plans if this Darazalex would not happen to work. He started to list off all these other drugs that could be used. His comment to me was that I have to be willing to keep an open mind. Told him it was hard at times; he understood. He is all for the Car_T trial if it opened up for me in the event of Darzalex failure. He felt my lab numbers looked good even though my M Spike that has been zero forever is elevated. Felt my light chains looked good. Darzalex causes some readings to be distorted. I will continue to take my Dex weekly even though I will not be having treatments. Bill was so happy about that. Next appointment to be with Abby on August 8th. Need to do Myeloma labs one week before. MRI is schedule for July 26th.
We pass this small store on the way to the Cancer Center that has had me baffled. The sign says "Cold Storage and Furs". So I am guessing since it doesn't get cold even here to wear a fur, that it is a place to visit so you can wear your fur?? This is Florida so could be.
Quote:
Everyday that I challenge this cancer and survive is a victory for me.
Sunday, July 8, 2018
Dandelions.
Tuesday the 3rd was treatment number 7 of Darzlex. Kristi was my support person for this long day. So glad she was able to go with me. We got there around 8:15. Was taken back to my room around 8:30 to get the day started. Kristi and I had a chance to just sit and talk for a bit. What about, don't remember but was great. Then the pre meds started, the Kyprolis was infused and after 15 minutes, the Darzalex was started. That was 10:30. Within about 20 minutes, I was out only to wake up for my hourly vitals. Kristi was able to relax, read and do whatever she had in her bag to do. And most of all, watch me sleep. Ha! Slept until about 1 hour before my Darzalex was finished. We had a little bit of excitement. Nurses came flying in looking at the patients in the room. 3 of us. Emergency light flashing in the ceiling. Finally figured out the one patient had pulled his tube out accidentally.
Having Kristi in the room made me think of all the nights I watched her till she went to sleep when she was a baby (years ago). Only to try to walk out of the room and she would wake up crying and I had to start all over again. Sorry Kristi, just had to tell.
Two years ago today I was officially told that I had Multiple Myeloma. And two years today, I am still fighting. Two years ago on the 29th, I was told by my family doctor (no longer my doctor) to get my affairs in order and call Hospice. And two years today, I am still fighting. New treatments, new drugs. And two years today, I am still fighting.
My treatment Tuesday did not go without the headaches and fatigue. Thursday, so tired. Mild headache. Friday, headache that's excruciating into the night. Nothing helps. Saturday, same till about 4 and then it started to calm some. Sunday, mild headache but felt okay. Monday will probably be a decent day only to start over again on Tuesday. And two years today, I am still fighting.
Tuesday's Darzalex treatment will be the 8th one. The last weekly one in the first segment of this plan. I should be going to every other week then for 16 weeks. I see Dr. Sarriera on Wednesday to get the next segment going. He will probably be ordering a pet scan, a MRI etc to see what this drug has done to the mass. Anxious to see what is happening because of the treatment of Darzalex.
Driving to the Cancer Center the other day I noticed yellow flowers mixed in with some greens in the median of the road. Got me thinking. I have never seen any dandelions since I have been in Florida. Nancy, I am sure you would like that. Lots of weeds though, lots of weeds.
Quote:
I just want to wake up and feel like I can win this battle. I haven't given up yet and I don't plan to anytime soon.
Tuesday the 3rd was treatment number 7 of Darzlex. Kristi was my support person for this long day. So glad she was able to go with me. We got there around 8:15. Was taken back to my room around 8:30 to get the day started. Kristi and I had a chance to just sit and talk for a bit. What about, don't remember but was great. Then the pre meds started, the Kyprolis was infused and after 15 minutes, the Darzalex was started. That was 10:30. Within about 20 minutes, I was out only to wake up for my hourly vitals. Kristi was able to relax, read and do whatever she had in her bag to do. And most of all, watch me sleep. Ha! Slept until about 1 hour before my Darzalex was finished. We had a little bit of excitement. Nurses came flying in looking at the patients in the room. 3 of us. Emergency light flashing in the ceiling. Finally figured out the one patient had pulled his tube out accidentally.
Having Kristi in the room made me think of all the nights I watched her till she went to sleep when she was a baby (years ago). Only to try to walk out of the room and she would wake up crying and I had to start all over again. Sorry Kristi, just had to tell.
Two years ago today I was officially told that I had Multiple Myeloma. And two years today, I am still fighting. Two years ago on the 29th, I was told by my family doctor (no longer my doctor) to get my affairs in order and call Hospice. And two years today, I am still fighting. New treatments, new drugs. And two years today, I am still fighting.
My treatment Tuesday did not go without the headaches and fatigue. Thursday, so tired. Mild headache. Friday, headache that's excruciating into the night. Nothing helps. Saturday, same till about 4 and then it started to calm some. Sunday, mild headache but felt okay. Monday will probably be a decent day only to start over again on Tuesday. And two years today, I am still fighting.
Tuesday's Darzalex treatment will be the 8th one. The last weekly one in the first segment of this plan. I should be going to every other week then for 16 weeks. I see Dr. Sarriera on Wednesday to get the next segment going. He will probably be ordering a pet scan, a MRI etc to see what this drug has done to the mass. Anxious to see what is happening because of the treatment of Darzalex.
Driving to the Cancer Center the other day I noticed yellow flowers mixed in with some greens in the median of the road. Got me thinking. I have never seen any dandelions since I have been in Florida. Nancy, I am sure you would like that. Lots of weeds though, lots of weeds.
Quote:
I just want to wake up and feel like I can win this battle. I haven't given up yet and I don't plan to anytime soon.
Tuesday, June 26, 2018
Lightening.
My days from last treatment till today was not without some painful headaches and fatigue. Infusions were Tuesday. Tuesday night I had a headache plus pressure around the eyes. Took a sinus pin (Bill got me a Walgreen's brand with guaifenesin in it that was recommended by my doctor) before I went to bed. Up a bit because of the steroids. Wednesday the same; took a sinus pill. Kyprols treatment. Very tired. Michelle and Gery had us over for dinner. Took another sinus pill, 2 Tylenol and was able to sleep. Thursday, more of the same. Just popping those sinus pills. Friday was not good. Headache, pressure behind the eyes, shooting pain from sinus to head, along with fatigue. Was able to get some relief and went to Kristi and Matt's for dinner. Saturday once again started with the bad headache, sinus pain, shooting pains. Bill got me a different sinus pill (CVS brand with the drug recommended but higher dose) Took one along with Aleve (not supposed to take Aleve - blood count down and messes with stomach during treatments). Took another sinus pill around 1:30. Finally subsided about 4. Started again around 9. Another pill and another Aleve. Also, along with the pills, I have been using the oil that Kerri sent me. Called Past Tense. She uses it for her migraine headaches and regular headaches. And Kristi uses it as well. Sunday felt pretty good. Very minimal headache and sinus pain. Was able to get in the pool and Michelle and Gery come over. Very spontaneous day. Was great fun!!! Love ending this week with a happy day.
So far, Monday this week, had minimal headache and sinus pain. And today, Tuesday, started out the same. But had my number 6 Darzalex, Kyprolis, Dex treatments today. Headaches started around 8 along with the pressure behind my heads. Sinus pill, Tylenol. Hope this week is not a repeat of last week. I only have 2 more Darzalex treatments of these first 8 to go. I really want to beat these headaches because I need to have Darzalex work and get rid of the tumor that was found.
Friday is the CT scan of my sinuses. Don't think they will find anything but you never know.
When we watch our local weather news, not only do they saw where the storms are on the map, they show the lightening strikes. Florida is the lightening capital of the United States. Did you know that?
Quote:
Cancer isn't a straight line. It's ups and downs.
My days from last treatment till today was not without some painful headaches and fatigue. Infusions were Tuesday. Tuesday night I had a headache plus pressure around the eyes. Took a sinus pin (Bill got me a Walgreen's brand with guaifenesin in it that was recommended by my doctor) before I went to bed. Up a bit because of the steroids. Wednesday the same; took a sinus pill. Kyprols treatment. Very tired. Michelle and Gery had us over for dinner. Took another sinus pill, 2 Tylenol and was able to sleep. Thursday, more of the same. Just popping those sinus pills. Friday was not good. Headache, pressure behind the eyes, shooting pain from sinus to head, along with fatigue. Was able to get some relief and went to Kristi and Matt's for dinner. Saturday once again started with the bad headache, sinus pain, shooting pains. Bill got me a different sinus pill (CVS brand with the drug recommended but higher dose) Took one along with Aleve (not supposed to take Aleve - blood count down and messes with stomach during treatments). Took another sinus pill around 1:30. Finally subsided about 4. Started again around 9. Another pill and another Aleve. Also, along with the pills, I have been using the oil that Kerri sent me. Called Past Tense. She uses it for her migraine headaches and regular headaches. And Kristi uses it as well. Sunday felt pretty good. Very minimal headache and sinus pain. Was able to get in the pool and Michelle and Gery come over. Very spontaneous day. Was great fun!!! Love ending this week with a happy day.
So far, Monday this week, had minimal headache and sinus pain. And today, Tuesday, started out the same. But had my number 6 Darzalex, Kyprolis, Dex treatments today. Headaches started around 8 along with the pressure behind my heads. Sinus pill, Tylenol. Hope this week is not a repeat of last week. I only have 2 more Darzalex treatments of these first 8 to go. I really want to beat these headaches because I need to have Darzalex work and get rid of the tumor that was found.
Friday is the CT scan of my sinuses. Don't think they will find anything but you never know.
When we watch our local weather news, not only do they saw where the storms are on the map, they show the lightening strikes. Florida is the lightening capital of the United States. Did you know that?
Quote:
Cancer isn't a straight line. It's ups and downs.
Tuesday, June 19, 2018
Brenda.
Today on our way to our 5th treatment of Darzalex, Dex and Kyprolis, I asked Bill what would we be doing if we didn't have all these treatment, doctor's appointments, MRIs, CTs, Pet Scans, etc? His response was, "We would be exploring Florida. Day or 2 day trips here and there. Like St. Augustine, places on the Gulf side, taking trips to CO to see Kerri and family, more time spent with the granddaughters here, beach. But we are doing treatments, have doc appointments, scans etc. So this is our life now." These things were said with smiles on our faces. Our life has changed. This is what we do now. This is what we have to do now. I am so glad we have each other to do our life as we have to do now.
My appointment today started at 8:30. Port access, labs, waiting on labs, approval from Dr. Sarriera, premeds, Kyprolis, wait 15 minutes, 10:30 - start the Darzalex. Done by 3:30. 5 hours. I slept from about 11 till the last 10 minutes. Only awaken by my nurse, Veronica, every hour for vitals. Went right back to sleep. No infusion related reactions. And hopefully, no reactions of the meds as the next couple of days roll on. Tomorrow I have my Kyprolis drip at 2. Then done for the week. No headaches, no sinus pressure please!!!
I have only a few friends on Facebook. A little over 150. This is not many compared to some. That is great for them and this is great for me. One friend that I recently added (well has been quite a few months ago) was someone I graduated with quite a few months ago too (1967 Ha). She takes care of keeping up with the events going on with our class. She takes care of posting info in our class Facebook for us. Info like, breakfasts, reunions, classmates we lost, classmates needing prayers because of their health and whatever she hears that we should know. I am glad I was able to friend her. She now reads my blog and comments her good wishes, sends prayers, sends hugs even while she, husband and friends are vacationing. Reads and comments on other FB posts. Just want to thank you, Brenda, for once again hooking up with me and caring.
Quote:
Always find time for the things that make you feel happy to be alive.
Today on our way to our 5th treatment of Darzalex, Dex and Kyprolis, I asked Bill what would we be doing if we didn't have all these treatment, doctor's appointments, MRIs, CTs, Pet Scans, etc? His response was, "We would be exploring Florida. Day or 2 day trips here and there. Like St. Augustine, places on the Gulf side, taking trips to CO to see Kerri and family, more time spent with the granddaughters here, beach. But we are doing treatments, have doc appointments, scans etc. So this is our life now." These things were said with smiles on our faces. Our life has changed. This is what we do now. This is what we have to do now. I am so glad we have each other to do our life as we have to do now.
My appointment today started at 8:30. Port access, labs, waiting on labs, approval from Dr. Sarriera, premeds, Kyprolis, wait 15 minutes, 10:30 - start the Darzalex. Done by 3:30. 5 hours. I slept from about 11 till the last 10 minutes. Only awaken by my nurse, Veronica, every hour for vitals. Went right back to sleep. No infusion related reactions. And hopefully, no reactions of the meds as the next couple of days roll on. Tomorrow I have my Kyprolis drip at 2. Then done for the week. No headaches, no sinus pressure please!!!
I have only a few friends on Facebook. A little over 150. This is not many compared to some. That is great for them and this is great for me. One friend that I recently added (well has been quite a few months ago) was someone I graduated with quite a few months ago too (1967 Ha). She takes care of keeping up with the events going on with our class. She takes care of posting info in our class Facebook for us. Info like, breakfasts, reunions, classmates we lost, classmates needing prayers because of their health and whatever she hears that we should know. I am glad I was able to friend her. She now reads my blog and comments her good wishes, sends prayers, sends hugs even while she, husband and friends are vacationing. Reads and comments on other FB posts. Just want to thank you, Brenda, for once again hooking up with me and caring.
Quote:
Always find time for the things that make you feel happy to be alive.
Monday, June 18, 2018
Memories.
So the headaches did not stay away. They came back strong. So hard to keep my eyes open as they feel like they are going to pop out. Friday, Saturday, Sunday. Took one of the other meds that is similar to Mucinex. This seemed to work the best of all. Today, Monday, it's not near as bad. Is it because the Darzalex treatment from last Tuesday is almost out of my system? Is it because the new med is working? Answers please!!!
Today was our day to go to Moffitt Cancer Center in Tampa to meet with Dr. Ochoa for a consultation on his opinion as to my journey with Multiple Myeloma. Moffitt, where I got my transplant. Moffitt, where I spent almost 30 days 1 1/2 years ago recovering from my transplant. Moffitt, Tampa. We left around 8:30. My first appointment was at 12 for labs. Then 1 for Dr. Ochoa and 2:15 for my immunizations (my baby shots).
We got to Moffitt around 10:30. Way early but you just don't know what the traffic conditions will be on 417 and I4. Ate, then headed to customer service to asked where Dr. Ochoa's office was located. Been awhile and just wasn't too sure. Bill and I had a good laugh because I asked the customer service agent where, he told me and I walked away to get Bill. Then all of a sudden I forgot what he told me. Chemo brain is real!! Went back and asked him again. Good laugh even from him.
Elevator A, 4th floor, make a left, office on the right. BMT Clinic. Had my labs drawn and around 12:50 was called back to Dr. Ochoa's office. Sat there for only about 10 minutes and in he comes. Looked at me and said, "You really look different since the last time I saw you." Yes, hair and about 20 pounds heavier. Dr. Ochoa started off by asking some questions about my treatment plans etc. We discussed my labs, my treatment plans, my failed treatment plans, my CT's, Dexoscns, Pet scans, radiation, bone marrow biopsies, MRI's and my 3 relapses over the last 1 1/2 years since my transplant. He felt all the directions Dr. Sarriera where ones he would have chosen. And he totally agrees with the plan I am now on with the Darzalex is the right one at this time. I discussed my headaches with him. Behind my eyes, at my temples, across the top of my eyebrows and sometimes at the nape of my neck. (I have a CT scan of my sinuses scheduled for next Friday). He too, felt it is sinus related. I have a low level of antibodies making it hard to fight off certain infections. Dr. Ochoa recommend that I discuss with Dr. Sarriera the possibility of an IVIG infusion to help strengthen my immune system and possibly help with the headaches.
After being a bit emotional about my relapses and wanting a plan to work, Dr. Ochoa talked about what could happen next if the Darzalex failed. This could be before the plan was finished or even after a bit of time has gone by. The failure would show in my labs or my Pet scans etc.His recommendation would be for me to participate in a new clinical study regarding Car-T cells that he feels I would qualify for because of my "markers". Markers like relapses, low antibodies etc. Car-T cell treatment is where my T-cells (an immune type cell) are removed and changed in a laboratory to attack cancer cells. This process would be a 30 day stay at Moffitt. Dr. Ochoa is going to submit my info to the clinical trail to get my name on a waiting list. We are hoping this will never happen but this would be another plan in case it does.
We spent an hour with Dr. Ochoa and his PA Kristin. Can't wait to discuss with Dr. Sarriera. Good byes, good luck and off to get my 5 baby shots. DPT (diphtheria, tetanus and pertussis), Hip (flu), Hepatitis B, Polio and Pneumococcal Conjugate vaccine (pneumonia, meningitis). Ouch, ouch, ouch, ouch and OUCH. Done. Stopped at Starbucks for the first floor for a Chai Latte, got our car and home. Great visit. Glad we did it.
Pulling in to the Gold Valet parking at Moffitt started a flood of memories. Unhappy and happy memories. Remembering needing a wheel chair to go from labs, doctor's offices, infusions. Remembering infusions of potasium and other fluids. Remembering being so tired as I waited for appointments to see doctor or for labs. Remembering my head of no hair. Remembering wearing masks. Then I remember Christie the BMT receptionist. Remembering when I was so cold and so tired, Christie bringing me a blanket and helping me lie down on a small couch till my appointment with the doctor. Remembering the tuna, ham or turkey bag lunches we were able to enjoy a while waiting for appointments. Today I got to see and hug Christie again. She didn't recognize me with hair but she did remember once I mentioned the name Snowberger. So happy memories and unhappy memories. Memories of my Moffitt days.
Quote:
And if I relapse again, I will get up, dust myself off and try again.
So the headaches did not stay away. They came back strong. So hard to keep my eyes open as they feel like they are going to pop out. Friday, Saturday, Sunday. Took one of the other meds that is similar to Mucinex. This seemed to work the best of all. Today, Monday, it's not near as bad. Is it because the Darzalex treatment from last Tuesday is almost out of my system? Is it because the new med is working? Answers please!!!
Today was our day to go to Moffitt Cancer Center in Tampa to meet with Dr. Ochoa for a consultation on his opinion as to my journey with Multiple Myeloma. Moffitt, where I got my transplant. Moffitt, where I spent almost 30 days 1 1/2 years ago recovering from my transplant. Moffitt, Tampa. We left around 8:30. My first appointment was at 12 for labs. Then 1 for Dr. Ochoa and 2:15 for my immunizations (my baby shots).
We got to Moffitt around 10:30. Way early but you just don't know what the traffic conditions will be on 417 and I4. Ate, then headed to customer service to asked where Dr. Ochoa's office was located. Been awhile and just wasn't too sure. Bill and I had a good laugh because I asked the customer service agent where, he told me and I walked away to get Bill. Then all of a sudden I forgot what he told me. Chemo brain is real!! Went back and asked him again. Good laugh even from him.
Elevator A, 4th floor, make a left, office on the right. BMT Clinic. Had my labs drawn and around 12:50 was called back to Dr. Ochoa's office. Sat there for only about 10 minutes and in he comes. Looked at me and said, "You really look different since the last time I saw you." Yes, hair and about 20 pounds heavier. Dr. Ochoa started off by asking some questions about my treatment plans etc. We discussed my labs, my treatment plans, my failed treatment plans, my CT's, Dexoscns, Pet scans, radiation, bone marrow biopsies, MRI's and my 3 relapses over the last 1 1/2 years since my transplant. He felt all the directions Dr. Sarriera where ones he would have chosen. And he totally agrees with the plan I am now on with the Darzalex is the right one at this time. I discussed my headaches with him. Behind my eyes, at my temples, across the top of my eyebrows and sometimes at the nape of my neck. (I have a CT scan of my sinuses scheduled for next Friday). He too, felt it is sinus related. I have a low level of antibodies making it hard to fight off certain infections. Dr. Ochoa recommend that I discuss with Dr. Sarriera the possibility of an IVIG infusion to help strengthen my immune system and possibly help with the headaches.
After being a bit emotional about my relapses and wanting a plan to work, Dr. Ochoa talked about what could happen next if the Darzalex failed. This could be before the plan was finished or even after a bit of time has gone by. The failure would show in my labs or my Pet scans etc.His recommendation would be for me to participate in a new clinical study regarding Car-T cells that he feels I would qualify for because of my "markers". Markers like relapses, low antibodies etc. Car-T cell treatment is where my T-cells (an immune type cell) are removed and changed in a laboratory to attack cancer cells. This process would be a 30 day stay at Moffitt. Dr. Ochoa is going to submit my info to the clinical trail to get my name on a waiting list. We are hoping this will never happen but this would be another plan in case it does.
We spent an hour with Dr. Ochoa and his PA Kristin. Can't wait to discuss with Dr. Sarriera. Good byes, good luck and off to get my 5 baby shots. DPT (diphtheria, tetanus and pertussis), Hip (flu), Hepatitis B, Polio and Pneumococcal Conjugate vaccine (pneumonia, meningitis). Ouch, ouch, ouch, ouch and OUCH. Done. Stopped at Starbucks for the first floor for a Chai Latte, got our car and home. Great visit. Glad we did it.
Pulling in to the Gold Valet parking at Moffitt started a flood of memories. Unhappy and happy memories. Remembering needing a wheel chair to go from labs, doctor's offices, infusions. Remembering infusions of potasium and other fluids. Remembering being so tired as I waited for appointments to see doctor or for labs. Remembering my head of no hair. Remembering wearing masks. Then I remember Christie the BMT receptionist. Remembering when I was so cold and so tired, Christie bringing me a blanket and helping me lie down on a small couch till my appointment with the doctor. Remembering the tuna, ham or turkey bag lunches we were able to enjoy a while waiting for appointments. Today I got to see and hug Christie again. She didn't recognize me with hair but she did remember once I mentioned the name Snowberger. So happy memories and unhappy memories. Memories of my Moffitt days.
Quote:
And if I relapse again, I will get up, dust myself off and try again.
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