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.
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