Using so much electricity.
Yesterday was my week 2 for my Kyprolis drip. We got signed in around 12:20. They took me right back to do my labs before I even sat down. Labs done and back out to the waiting room till Angie, my oncology nurse, called me back to room 17. She told us all my labs were back and the order was sent to the pharmacy to mix my chemo. And that it shouldn't be long. Bill and I looked at each other and he said - this will be a first. Well, let me tell you, it was a very long wait. The nurses apologized several times. Finally came through. Hooked it up, had it green lined and drip was started. Done. Flush started and then heparin injected.
Had a pain on the right side of my head by my ear (but not in my ear) that would shoot up to the top of my head. This was something new. Lasted quite a while. Finally took a Tylenol. Seemed to help. Then around 8:00 I took 2 more Tylenol as instructed by Dr. Sarriera. Went to bed around 9:30. Was so very tired. But NO CHILLS!!! Yay! That's two weeks in a row.
Today was a chemo down day. Got up with a groggy head, dull headache, sinus pain. This lasted most of the morning. Finally laid down around 1 and slept till 4. Felt a bit better. And now at 9 PM, I am about ready to head to bed again. I hate these chemo down days. Hoping and praying that some day I will be able to not have them. But I am thinking because of Myeloma not being curable, I will have to do treatments forever. Maybe, just maybe, they will find a way to cure this disease.
Benn will be checking in to Mayo Clinic on Monday to get ready for his bone marrow transplant. I called him the other day to wish him good luck. He was in good spirits. His wife, Carmella, is to set up a blog for the members of our IMF (International Myeloma Foundation) support group. "See you in 3 months" was Benn's happy go lucky words to me. Please say a prayer for my friend Benn and his family.
Well, my hair continues to grow slowly but surely. It's about 2 inches or more and to the point that I have to make it wet on my off washing days. Then I have to use the hair dryer to try to tame it down and style it a little. The other day, Bill came in as I was drying it and said - "What did I tell you about using so much electricity?" Was so funny but very heart warming. Bill, my wonderful, caring, loving caregiver. Just not sure where I would be if I didn't have him.
Quote:
Cancer can open many doors. One of the most important is your heart.
Wednesday, March 28, 2018
Thursday, March 22, 2018
Okay?
Started my maintenance Kyprolis again Tuesday. And no chills. Started to get cold around 8 PM. Took my two Tylenol that Dr. Sarriera wanted me to try. Was in bed around 9 as I was really feeling fatigued from the chemo. And again, no chills. I took my temperature throughout the night as requested by Dr. Sarriera. It ranged from 99.1 to 100.4. And again, I repeated, no chills.
The next day, Wednesday the 21st, was Bill's surgery for his cancer on his head (squamous). I had it set for Kristi to take her dad if I wasn't feeling up to it. Day after chemo isn't really a good day for me to be driving. His appointment was for 9. I woke up around 7 with a foggy head, sinuses screaming, sore throat and overall day after chemo effects. So Kristi got here around 8:30. Brought me a cup of Chai Latte from Starbucks, Thanks Kristi!!! Again, Bill's appointment was at 9. They finally took him back to a room around 9:30 where he waited until about 10:30 for the surgery. They cut a slice out of the area and then check to see if they got all the cancer. If not, they slice again. They left Bill go out in the waiting room where Kristi was to wait for the results to come back. Told him it would be about 45 minutes. Well, that 45 minutes turned in to 2 hours. Seriously. Bill said when he went out in to the waiting room, it was full. Only one chair available and it had someone's pocketbook on it. Bill, and we all know Bill, said - well, I guess I will just stand. Guy moved the pocketbook. After a bit of waiting, he also asked if they were sort of help. Finally called him back and gave him the good news that they got all the cancer. No more slicing. Got discharged and was home around 1. Long day for him. Long day for Kristi (thanks). Long day for me waiting and feeling like I should be there with Bill. There was no way I could have driven or stayed all that time.
So the cut is about the size of a quarter and about 1/8 inch deep. I have to clean it twice a day. He opted not to have stitches at the advice of his doctor. Doctor said will heal better. Not a very pretty looking hole. First cleaning went well. I didn't pass out when I saw it and Bill was okay while I cleaned it. Second, not as well but we got it done. They want him to keep it covered and moist with the cream he got. I figured, opened and dry. They called in two prescriptions. One antibiotic and one cream. When Bill went to pick them up, they were sent to the wrong CVS. The pharmacist tech was very helpful getting the scripts released to our CVS.
I thought for sure that I was starting a sinus infection the way I felt. Sinuses screamed most of the day. Throat hurt most of the day. Very tired on top of the foggy head. Dr. Sarriera sent in a script for an antibiotic. Today when I got up, my throat hurt so bad. Gargled with salt water and after a bit, started feeling better. I did a lot of sneezing and coughing today. Was to get mom tomorrow but not bringing her over here to make her sick.
That's the world of the Snowbergers!
On Tuesday, day of the chemo drip, we had horrible weather. There were tornadoes sirens, local airports were closed, they pulled all the blinds shut in the Cancer Center, plugged all our machines in to red colored outlets. I was just about finished with my drip when all this started. The rain was horrendous. Hail in some areas. Bill and I decided to wait it out. Once I was finished, we went down to the lobby and sat and watched out the windows. Not nice at all. In the lobby is a reception area to help you if needed. I noticed a receptionist bringing out a basket of rolled towels for anyone coming in to use to dry with. Then one of the receptionists walked up to Bill and I. She asked if we were okay? Then asked if she could get something to drink or a snack? Talked a bit and she went on to the next person sitting there. We have been impressed by this Cancer Center many times over but this was was up on the top!
Quote:
I tell my story, not to gain glory but so that others may know hope.
Started my maintenance Kyprolis again Tuesday. And no chills. Started to get cold around 8 PM. Took my two Tylenol that Dr. Sarriera wanted me to try. Was in bed around 9 as I was really feeling fatigued from the chemo. And again, no chills. I took my temperature throughout the night as requested by Dr. Sarriera. It ranged from 99.1 to 100.4. And again, I repeated, no chills.
The next day, Wednesday the 21st, was Bill's surgery for his cancer on his head (squamous). I had it set for Kristi to take her dad if I wasn't feeling up to it. Day after chemo isn't really a good day for me to be driving. His appointment was for 9. I woke up around 7 with a foggy head, sinuses screaming, sore throat and overall day after chemo effects. So Kristi got here around 8:30. Brought me a cup of Chai Latte from Starbucks, Thanks Kristi!!! Again, Bill's appointment was at 9. They finally took him back to a room around 9:30 where he waited until about 10:30 for the surgery. They cut a slice out of the area and then check to see if they got all the cancer. If not, they slice again. They left Bill go out in the waiting room where Kristi was to wait for the results to come back. Told him it would be about 45 minutes. Well, that 45 minutes turned in to 2 hours. Seriously. Bill said when he went out in to the waiting room, it was full. Only one chair available and it had someone's pocketbook on it. Bill, and we all know Bill, said - well, I guess I will just stand. Guy moved the pocketbook. After a bit of waiting, he also asked if they were sort of help. Finally called him back and gave him the good news that they got all the cancer. No more slicing. Got discharged and was home around 1. Long day for him. Long day for Kristi (thanks). Long day for me waiting and feeling like I should be there with Bill. There was no way I could have driven or stayed all that time.
So the cut is about the size of a quarter and about 1/8 inch deep. I have to clean it twice a day. He opted not to have stitches at the advice of his doctor. Doctor said will heal better. Not a very pretty looking hole. First cleaning went well. I didn't pass out when I saw it and Bill was okay while I cleaned it. Second, not as well but we got it done. They want him to keep it covered and moist with the cream he got. I figured, opened and dry. They called in two prescriptions. One antibiotic and one cream. When Bill went to pick them up, they were sent to the wrong CVS. The pharmacist tech was very helpful getting the scripts released to our CVS.
I thought for sure that I was starting a sinus infection the way I felt. Sinuses screamed most of the day. Throat hurt most of the day. Very tired on top of the foggy head. Dr. Sarriera sent in a script for an antibiotic. Today when I got up, my throat hurt so bad. Gargled with salt water and after a bit, started feeling better. I did a lot of sneezing and coughing today. Was to get mom tomorrow but not bringing her over here to make her sick.
That's the world of the Snowbergers!
On Tuesday, day of the chemo drip, we had horrible weather. There were tornadoes sirens, local airports were closed, they pulled all the blinds shut in the Cancer Center, plugged all our machines in to red colored outlets. I was just about finished with my drip when all this started. The rain was horrendous. Hail in some areas. Bill and I decided to wait it out. Once I was finished, we went down to the lobby and sat and watched out the windows. Not nice at all. In the lobby is a reception area to help you if needed. I noticed a receptionist bringing out a basket of rolled towels for anyone coming in to use to dry with. Then one of the receptionists walked up to Bill and I. She asked if we were okay? Then asked if she could get something to drink or a snack? Talked a bit and she went on to the next person sitting there. We have been impressed by this Cancer Center many times over but this was was up on the top!
Quote:
I tell my story, not to gain glory but so that others may know hope.
Thursday, March 8, 2018
Orlando Shuffle
Well, it happened again. Kyprolis infusion Tuesday around 2. Felt a little nauseous the rest of the day. Went over to Sandy and Denny's for dinner. Roast beef, mashed potatoes, green beans and gravy. Pretty good even on a nauseous stomach. Got ready for bed around 9 and around 9:30 I was freezing. Then the shivers started again for the third week. Not as bad and not as many as the first week or the second. This went on for about 1 1/2 hours. I was able to sleep some in between. I took my temperature when it first started. 98.6 Took it again at 2. 101.4 Then at 4. 100.8 Then again at 8. 98.6 So this is some fever going on there. I wish I would have taken it during the chills but I was too cold to move.
Emailed Desiree first thing Wednesday morning. She wasn't due in until noon but Beth gave my message to Dr. Sarrierra. He said he thinks it a reaction to the Kyprolis infusion. Something Bill and I have been saying all along. But in his defense, he had to rule out everything else like bacterias, infections etc. That's the way he does things and we are glad he is so thorough. After my next infusion day, he wants me to take 2-500 mg of Tylenol before I go to bed. Then we will go from there. I have my 13 days off now. Won't be until March 20th for my next Kyprolis infusion. Oh, Wednesday was a tired day. Stayed at home. Needed it for sure.
We have been traveling to UF Health Cancer Center for pretty close to 2 years now (end of June will be 2 years). Bill knows the route pretty well. He know which lanes to be in and does great at maneuvering around cars, in the proper manner, to get in to those lanes. Even though we know which lane to be in, it seems there are those drivers who don't. So they just shoot across in front of you to get in the lane that is 3 lanes over. Then some of them decide that really isn't the lane they wanted in and just shoot back across in front of you. Don't look at them because in their eyes, they did no wrong. It was you for being in your lane. So Bill and I now named our ride to the Cancer Center as the Orlando Shuffle.
Quote:
One day at a time. One step at a time. Do what you can and do your best. Then let God handle the rest.
Well, it happened again. Kyprolis infusion Tuesday around 2. Felt a little nauseous the rest of the day. Went over to Sandy and Denny's for dinner. Roast beef, mashed potatoes, green beans and gravy. Pretty good even on a nauseous stomach. Got ready for bed around 9 and around 9:30 I was freezing. Then the shivers started again for the third week. Not as bad and not as many as the first week or the second. This went on for about 1 1/2 hours. I was able to sleep some in between. I took my temperature when it first started. 98.6 Took it again at 2. 101.4 Then at 4. 100.8 Then again at 8. 98.6 So this is some fever going on there. I wish I would have taken it during the chills but I was too cold to move.
Emailed Desiree first thing Wednesday morning. She wasn't due in until noon but Beth gave my message to Dr. Sarrierra. He said he thinks it a reaction to the Kyprolis infusion. Something Bill and I have been saying all along. But in his defense, he had to rule out everything else like bacterias, infections etc. That's the way he does things and we are glad he is so thorough. After my next infusion day, he wants me to take 2-500 mg of Tylenol before I go to bed. Then we will go from there. I have my 13 days off now. Won't be until March 20th for my next Kyprolis infusion. Oh, Wednesday was a tired day. Stayed at home. Needed it for sure.
We have been traveling to UF Health Cancer Center for pretty close to 2 years now (end of June will be 2 years). Bill knows the route pretty well. He know which lanes to be in and does great at maneuvering around cars, in the proper manner, to get in to those lanes. Even though we know which lane to be in, it seems there are those drivers who don't. So they just shoot across in front of you to get in the lane that is 3 lanes over. Then some of them decide that really isn't the lane they wanted in and just shoot back across in front of you. Don't look at them because in their eyes, they did no wrong. It was you for being in your lane. So Bill and I now named our ride to the Cancer Center as the Orlando Shuffle.
Quote:
One day at a time. One step at a time. Do what you can and do your best. Then let God handle the rest.
Sunday, March 4, 2018
Unihorse!
X-rays, blood cultures, urine culture all came back negative. Bill and I sort of thought they would. No bacteria present. So Dr. Sarriera wants me to see when and if it happens again. When, I can and did tell him that for the last two weeks. But we will have to see if it happens again this Tuesday after my Kyprolis infusion around 9:45 PM to 11 PM. Desiree said she will be ready for my email Wednesday morning.
Bill had two biopsies 2 weeks ago. One on the side of his face near his cheek bone and one on the top of his head. We got the results back on Thursday. The one near his cheek bone came back negative. The one on his head came back cancer. I immediately lost it. Tried to control my tears but wasn't happening. Even after he told me this cancer, called squamous cell, is common and can be completely removed with minor surgery. But, I hear the word cancer and I can only hear the word cancer. Just me but that's the way it is. His doctor will remove the cancer layer by layer, examining each layer under a microscope until no abnormal cells remain. So I am praying he only has to remove minimal layers. Most skin cancers are highly treatable but again, with me, I hear cancer and I have to deal with it in my own way. I will ask if you could say a prayer or two for Bill please.
Today, the guys went to a Yankee spring training game and us girls decided to go out for lunch. Us girls included, My Mom, Sandy, Michelle (she has been in FL for a few days visiting with Sandy and Denny), Kristi, Sasha, Ellie and me. On the way home from the restaurant, I saw a horse trailer. Turned around and saw a horse out of the corner of my eye. Sasha and Ellie was able to see they had the horse dressed up like a unicorn. We figured it was maybe a kid's birthday party?? Anyway, I am calling it a Unihorse.
Quote:
We all live in the fear of cancer but being told you have cancer is terrifying.
X-rays, blood cultures, urine culture all came back negative. Bill and I sort of thought they would. No bacteria present. So Dr. Sarriera wants me to see when and if it happens again. When, I can and did tell him that for the last two weeks. But we will have to see if it happens again this Tuesday after my Kyprolis infusion around 9:45 PM to 11 PM. Desiree said she will be ready for my email Wednesday morning.
Bill had two biopsies 2 weeks ago. One on the side of his face near his cheek bone and one on the top of his head. We got the results back on Thursday. The one near his cheek bone came back negative. The one on his head came back cancer. I immediately lost it. Tried to control my tears but wasn't happening. Even after he told me this cancer, called squamous cell, is common and can be completely removed with minor surgery. But, I hear the word cancer and I can only hear the word cancer. Just me but that's the way it is. His doctor will remove the cancer layer by layer, examining each layer under a microscope until no abnormal cells remain. So I am praying he only has to remove minimal layers. Most skin cancers are highly treatable but again, with me, I hear cancer and I have to deal with it in my own way. I will ask if you could say a prayer or two for Bill please.
Today, the guys went to a Yankee spring training game and us girls decided to go out for lunch. Us girls included, My Mom, Sandy, Michelle (she has been in FL for a few days visiting with Sandy and Denny), Kristi, Sasha, Ellie and me. On the way home from the restaurant, I saw a horse trailer. Turned around and saw a horse out of the corner of my eye. Sasha and Ellie was able to see they had the horse dressed up like a unicorn. We figured it was maybe a kid's birthday party?? Anyway, I am calling it a Unihorse.
Quote:
We all live in the fear of cancer but being told you have cancer is terrifying.
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