Nevada
Bill's surgery on October 16th went okay. Had to keep his head down 22 hours a day. Such a hard thing to do. He listened to a lot of audio books. Ordered a head rest that was similar to one the use to give massages. 2 drops in his eye 4 times a day. Gery came over and visited several times. That sure helped. We/he must have done okay because when we back for his follow up visit on the 25th, he was told he didn't have to keep his head down anymore. Still has the gas bubble. It's dropped about a little less than a 1/3 of the way down. Still a bit to go. He sees nothing out of his eye yet. We go back in 3 weeks. Told him he could drive but we are thinking not. He is not allowed to fly so Thanksgiving with Kerri and Paul is out. And so is Christmas. We are very disappointed about this situation but it is for Bill's safety. Bubble could like explode because of the altitude. He has a green bracelet on saying this. That won't be taken off until bubble disappears. Dr. Feinstein couldn't see past the bubble looking straight ahead. He laid Bill back and made him look from side to side and up and down. He feels that the Macular hole (reason for the surgery) has been healed. Just pray his gas bubble soon dissipates so he can see again.
I started my chemo pill, Thalomide, and Dex on October 25th. Just feel very tired so far. I am praying that I don't get any other side effects. I need this to work. I will take the Dex once a week. The Thalomide every day for 21 days. Then I am off 7 days. Once I start back, I will be taking them for 28 days, 7 days off. The 28 days will be what I will be doing all the time then. I am to do blood work every week. Going to try to go to Quest instead of driving to the Cancer Center. We will see how that works. Need the results to go to Dr. Sarriera each week. I have an appointment with him on November 7th. He wasn't too happy about me not starting the Thalidomide till the 25th. I had wanted to wait until November 1st. He said he didn't want me to wait because of my type of Myeloma is aggressive. And, if I think about it, I haven't had any chemo since, July 9th, two weeks before my surgery on July 25th.
The scar from the surgery has all but healed up. I have a spot or two that is still scabby. Yuck. The scar runs from the top of my scalp, down the back of my head to about the middle and then over to behind my right ear. I will soon have a mohawk. The hair is starting to grow back where the scar is. It's about 1 1/2 inches long and sticks straight up. Mohawk on the way.
I received a voice message but it didn't recognize the number. When I listened to the message it said "Hi this is Sharon from Nevada. Huh? Then about the time I am listening, I get a text saying" Hi Kathy this is Darren from NirVana. The PT supervisor. Not Sharon from Nevada!!!! Good laugh.
Quote:
Each day I conquer Myeloma, makes me another day stronger. Cancer sucks.
Sunday, October 27, 2019
Sunday, October 13, 2019
Marijuana.
My sister Cheri headed back to California on, Thursday, October 10th. Love having her here. Sisters and brothers are very special you know. She did get to spend some time with mom too.
My appointment with Dr. Sarriera was Friday, October11th to get his opinion regarding the plasmacytomas found in both my lower legs in the tibia. Dr. Nanda had called him as he told us he would and they discussed my situation. Dr. Sarriera reviewed the Pet Scan with us showing us the same things that Dr. Nanda had shown us. He felt that radiation wasn't the way to go. So he wants to start me on a chemo plan again. I will be taking the chemo pill called Thalidamide. This pill was one of the first chemo pills used to treat Myeloma. Is the mother of Revlimid and Pomalyst. Along with the pill, he wants me to go back on Dex and a baby aspirin. I am to start with a 21 days on and 1 week off. Then as long as I can tolerate the Thalidamide, I will take it for 28 days and one week off. Really didn't want to go back on chemo. But we are depleting the drugs that fight Myeloma so praying this works for me. Won't be starting the pills for maybe a week or so. Has to go through my insurance company first. Just want it to work without a lot of side effects. Something has to work for me. Been saying that for over 3 years.
Bill's surgery is this Wednesday, October 16th. Praying that goes well for him. I will now get to be the caregiver to him for a while.
So I was getting my lab work done for my appointment with Dr. Sarriera. The nurse was looking at his orders and I said to her that this was just the normal labs. Don't think he ordered marijuana labs this go round. She just started laughing. Me too, once I realized what I said.
Quote:
Cancer is an ugly disease. But Hope is whispering, "Never give up. Try it one more time."
My sister Cheri headed back to California on, Thursday, October 10th. Love having her here. Sisters and brothers are very special you know. She did get to spend some time with mom too.
My appointment with Dr. Sarriera was Friday, October11th to get his opinion regarding the plasmacytomas found in both my lower legs in the tibia. Dr. Nanda had called him as he told us he would and they discussed my situation. Dr. Sarriera reviewed the Pet Scan with us showing us the same things that Dr. Nanda had shown us. He felt that radiation wasn't the way to go. So he wants to start me on a chemo plan again. I will be taking the chemo pill called Thalidamide. This pill was one of the first chemo pills used to treat Myeloma. Is the mother of Revlimid and Pomalyst. Along with the pill, he wants me to go back on Dex and a baby aspirin. I am to start with a 21 days on and 1 week off. Then as long as I can tolerate the Thalidamide, I will take it for 28 days and one week off. Really didn't want to go back on chemo. But we are depleting the drugs that fight Myeloma so praying this works for me. Won't be starting the pills for maybe a week or so. Has to go through my insurance company first. Just want it to work without a lot of side effects. Something has to work for me. Been saying that for over 3 years.
Bill's surgery is this Wednesday, October 16th. Praying that goes well for him. I will now get to be the caregiver to him for a while.
So I was getting my lab work done for my appointment with Dr. Sarriera. The nurse was looking at his orders and I said to her that this was just the normal labs. Don't think he ordered marijuana labs this go round. She just started laughing. Me too, once I realized what I said.
Quote:
Cancer is an ugly disease. But Hope is whispering, "Never give up. Try it one more time."
Tuesday, October 8, 2019
Cotton
Made it through the CT and the PetScan requested by Dr. Nanda, my radiologist. Of course, I had some help with my Ativan. Otherwise, I couldn't do them. My sister, Cheri is here visiting and was able to go along as well as to my appointment with Dr. Nanda today, October 8th.
There was good news and bad news at that appointment. Good news, no Myeloma showed up on my skull/ brain. There is still some blood on the brain that is reabsorbing. Bad news, the PetScan shows Myeloma in the bone marrow in both of my tibia bones in my legs. The tibia is the large bone located in the lower front portion of your leg. This is also known as the shinbone. Dr. Nanda and Dr. Sarriera have been in contact with each other. Radiation and or chemo would be the course of action. There is a meeting of the board of oncologists and radiologists on Tuesday. Dr. Nanda and Dr. Sarriera want to present my case to them to see which way they feel would be the best way to go. I have an appointment with Dr. Sarriera this Friday, October 11th. Anxious for this appointment too. Want to hear his take on this new finding. One thing, if I go the radiation way, I do not have to shave my legs. LOL.
After this appointment, I had have 3 shots. DPT, pneumonia and hepatitis B. And I didn't even get a sticker or a lollipop for being a good patient. My arm is a little stiff tonight though.
My PT and OT is done now. Tomorrow, the PT supervisor will be here to reevaluate me. From there he will suggest if he feels I need out patient therapy. I have made great progress since coming home from the hospital. I never use the cane any more, wheelchair only for dressing but only occasionally. I have been doing my showers without assistance from Bill helping to make sure I get in and out carefully. Have loaded and unloaded the dishwasher, laundry, washed dishes by hand, cooked, been in the pool again, mopped my floors. On and on. It's amazing how just several weeks ago I needed help to get to the bathroom to being able to do so much. Kate would be proud of me. Miss you Kate.
We had some other upsetting news. Bill, who has been my rock through all this and never complaining, has to have surgery on his eye. He has a hole in his macular that needs to be repair. This will be done next Wednesday. Recovery time is 7 to 10 days. During this time, he has to keep his head down. He ordered a piece of equipment to help him do this. I will be giving him some caregiving for a change. Kristi will help getting her Dad to and from his appointments until he is able to drive again. He says he will be healed in 3 days. NOT!!!
Sandy and Denny will be leaving tomorrow. Sandy didn't have to help me much since I am doing so well. We did do some walking though. And they made some good meals. And Cheri goes home on Thursday. I think she just had to see that I was doing alright. Am I right Cheri? Then we are on our own again. I am not back to normal me but I will be some day. Each day shows improvement.
So Bill makes me cotton balls with different oils on for me to smell. This morning as we were getting ready to leave for my doctor's appointment, I picked up my cotton ball and stuck it in my bra (that's were I keep it) and then picked up my phone and smelled that. Duh! :) Mimi, is there an oil to put on our phones? :).
Quote:
I will dust myself off and move forward again because I miss me. The old me, the happy me, the smiling me, the laughing me, ME! Cancer isn't your friend.
Made it through the CT and the PetScan requested by Dr. Nanda, my radiologist. Of course, I had some help with my Ativan. Otherwise, I couldn't do them. My sister, Cheri is here visiting and was able to go along as well as to my appointment with Dr. Nanda today, October 8th.
There was good news and bad news at that appointment. Good news, no Myeloma showed up on my skull/ brain. There is still some blood on the brain that is reabsorbing. Bad news, the PetScan shows Myeloma in the bone marrow in both of my tibia bones in my legs. The tibia is the large bone located in the lower front portion of your leg. This is also known as the shinbone. Dr. Nanda and Dr. Sarriera have been in contact with each other. Radiation and or chemo would be the course of action. There is a meeting of the board of oncologists and radiologists on Tuesday. Dr. Nanda and Dr. Sarriera want to present my case to them to see which way they feel would be the best way to go. I have an appointment with Dr. Sarriera this Friday, October 11th. Anxious for this appointment too. Want to hear his take on this new finding. One thing, if I go the radiation way, I do not have to shave my legs. LOL.
After this appointment, I had have 3 shots. DPT, pneumonia and hepatitis B. And I didn't even get a sticker or a lollipop for being a good patient. My arm is a little stiff tonight though.
My PT and OT is done now. Tomorrow, the PT supervisor will be here to reevaluate me. From there he will suggest if he feels I need out patient therapy. I have made great progress since coming home from the hospital. I never use the cane any more, wheelchair only for dressing but only occasionally. I have been doing my showers without assistance from Bill helping to make sure I get in and out carefully. Have loaded and unloaded the dishwasher, laundry, washed dishes by hand, cooked, been in the pool again, mopped my floors. On and on. It's amazing how just several weeks ago I needed help to get to the bathroom to being able to do so much. Kate would be proud of me. Miss you Kate.
We had some other upsetting news. Bill, who has been my rock through all this and never complaining, has to have surgery on his eye. He has a hole in his macular that needs to be repair. This will be done next Wednesday. Recovery time is 7 to 10 days. During this time, he has to keep his head down. He ordered a piece of equipment to help him do this. I will be giving him some caregiving for a change. Kristi will help getting her Dad to and from his appointments until he is able to drive again. He says he will be healed in 3 days. NOT!!!
Sandy and Denny will be leaving tomorrow. Sandy didn't have to help me much since I am doing so well. We did do some walking though. And they made some good meals. And Cheri goes home on Thursday. I think she just had to see that I was doing alright. Am I right Cheri? Then we are on our own again. I am not back to normal me but I will be some day. Each day shows improvement.
So Bill makes me cotton balls with different oils on for me to smell. This morning as we were getting ready to leave for my doctor's appointment, I picked up my cotton ball and stuck it in my bra (that's were I keep it) and then picked up my phone and smelled that. Duh! :) Mimi, is there an oil to put on our phones? :).
Quote:
I will dust myself off and move forward again because I miss me. The old me, the happy me, the smiling me, the laughing me, ME! Cancer isn't your friend.
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