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.
Wednesday, November 28, 2018
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.
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