Australia
So the labs are back. Not good. I received a call from Dr. Sarriera on Thursday. Left message to call him back. We knew if he called, that wasn't good. Finally we were able to connect. He started by saying the labs were back and the light chains are not good. They are getting higher. October they were 2.03, November 10.3 and December 20.2 He said he didn't want me to be with out some sort of treatment seeing this.
I will be taking a chemo pill called Selinexor (Xpovio) on day 1 and 3 along with Dex each week. No week off. So day 1 could be Monday and day 3 would be Wednesday or day 1 Tuesday and day 3 would be Thursday. I will be taking 80 mg of the Selinexor and 10 mg of the Dex on each of those days. . Not sure when I will be starting as we are waiting on my insurance company to approve.
This pill has been FDA approved in July of this year (2019). There were several clinical trials prior to the approval. So a fairly new drug for Myeloma patients who have relapsed after several treatment plans not working. That would be me.
As with most drugs, there are side effects. Deficiency of platelets, neutropenia, nausea, GI problems, fatigue, infections etc, etc. We will just have to see what, if any, will be my side effects. Of course, we know the Dex will cause a mild rash, not letting me sleep, making me sleep, crying for no reason. And I will be taking this twice a week instead of once. Poor Bill.
Again, none of this will be started until I get the prescription of the Selinexor. The pharmacy at the Cancer Center has been wonderful. They have mailed my last few prescriptions directly to me since we weren't coming in to the Cancer Center. They will call me once this one is ready.
I know you all are saying to me, this is the one that's going to work. I appreciate it but sometimes, I would rather not hear that. But say it as you want because I hope and pray you are all right.
I ask Kristi for a few suggestions for the girls for Christmas. She gave me one for Ellie for a sweatshirt. I ordered it right away because of the possibility it may sell out. Didn't really pay attention to where it would be shipped from just when it would be shipped. Got an email saying it was being processed for shipping. Then read it would be shipping from Australia. Oh. It's not going to not be here for Christmas. :) Will print a picture of a kangaroo and put in a box and wrap it.
Heard from our friends Joanie and Harry. Harry has been in the hospital (John Hopkins) for 11 days. Not sure what is wrong. Started out as shingles. Has been through a lot the last 11 days. Please say few prayers for him and for Joanie as the care giver.
Quote:
Cancer doesn't define you; strength and courage does.
Sunday, December 22, 2019
Tuesday, December 17, 2019
No
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Sunday, December 1, 2019
Home
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
Tuesday, November 19, 2019
Cookies
I have been thinking about where I was 2 1/2 months ago. I was in a wheel chair most of the time, couldn't get a full shower alone, couldn't dress myself, couldn't make dinner, couldn't go to the bathroom without someone helping me, couldn't walk without assistance, couldn't lift my left arm, couldn't use my left hand, couldn't use this Mac as I couldn't type, couldn't sleep in my bed only in the recliner that was about 3 feet from where my sister, Deb was sleeping, couldn't do the laundry, couldn't sew, couldn't drive, couldn't use my iPad and phone correctly. Couldn't, couldn't do much. Dependent on others to help me with just about everything. Not fun but with that help, I am where I am today. No wheel chair, shower on my own, able to dress myself, make dinner, walk without a cane, lift my left arm, use my left hand, sleep in my bed, use my iPad and phone, on and on. A lot of the help came from my sister, Deb and Bill encouraging me, the physical therapist, Jeremy, and Kate, my occupational therapist. Kristi and Kerri encouraging me. A lot of texts, cards, phone calls from so many of you encouraging me. Michelle, Gery and Sharon sitting with me so Bill could go to the grocery store etc. Sandy and Denny making us dinners, sitting with me also. My sister Cheri flying in for a week to see for herself that I was okay. Today, with all this help, I feel I have made pretty much a full recovery from my brain surgery. A surgery that was to have me in the hospital for 3 to 5 days but ended up being there for 26 days. Several of those that I have no memory of. Just what Bill, Kristi and Kerri tell me about. Some of it funny. Like singing "Oh Holy Night" to Sasha, looking for Jakob, seeing Ana and Ellie playing a game, telling Bill and Kristi to shut up so I could sleep, repeating the same word over and over and a lot more. Some not so funny. Like pulling out my feeding tube, pulling out my IV's, relying on the nurses to move me around in the bed. Some I don't want to remember. But today because of all these could nots and all of these cans, I am where I am. Able to function normally. What I call normal. Bill may have comments on that. :).
Had a follow up appointment with Dr. Sarriera today, November 19th. I am now taking Thalidomide every day with no week off. Not too sure I am happy about that. This chemo pill makes me so fatigued every day. No energy. So hard to get moving. Dr. Sarriera says more exercise. I also will be taking Dex once a week. I have a mild rash which we are sure is coming from the Thalidomide. I have always got a light rash from the Dex but that would disappear in a day or so. This rash doesn't seem to want to disappear. It doesn't itch. Will watch to make sure it doesn't get worse. Also had labs drawn for CMP, CBC and Myeloma. Those results will be coming in to my portal day by day. The Myeloma results take longer. In fact, the one result takes almost a week. I go back to see Dr. Sarriera December 17th. Meanwhile, he and his staff will be watching the lab results.
Wish I could post pictures here so you could see, for those who haven't seen her, our new addition. Leeta. She's a 5 year old basset/terrier mixed rescue that we adopted about 1 1/2 weeks ago thanks to Kristi and Poodle and Pooch. Such a sweetheart. She's a keeper.
When Deb was here, we decided to make cookies. She would give me one when I accomplished something we had been working on. One day I got my slacks on myself. I was talking to mom on the phone using my right hand and Deb handed me a piece of a cookie in my left hand. I tried to get the cookie up to my mouth. Now remember I didn't have much control of that hand. Not happening. All Deb could do was laugh. Hand trying to get the cookie up to my mouth, head moving, mouth open. Not happening. Finally said goodbye to mom and put the cookie in my right hand and ate it. Sorry, no video. Thanks for that laugh and many more while you were here Deb.
Quote:
Life is a precious gift. We realize this when we are fighting cancer to stay alive.
I have been thinking about where I was 2 1/2 months ago. I was in a wheel chair most of the time, couldn't get a full shower alone, couldn't dress myself, couldn't make dinner, couldn't go to the bathroom without someone helping me, couldn't walk without assistance, couldn't lift my left arm, couldn't use my left hand, couldn't use this Mac as I couldn't type, couldn't sleep in my bed only in the recliner that was about 3 feet from where my sister, Deb was sleeping, couldn't do the laundry, couldn't sew, couldn't drive, couldn't use my iPad and phone correctly. Couldn't, couldn't do much. Dependent on others to help me with just about everything. Not fun but with that help, I am where I am today. No wheel chair, shower on my own, able to dress myself, make dinner, walk without a cane, lift my left arm, use my left hand, sleep in my bed, use my iPad and phone, on and on. A lot of the help came from my sister, Deb and Bill encouraging me, the physical therapist, Jeremy, and Kate, my occupational therapist. Kristi and Kerri encouraging me. A lot of texts, cards, phone calls from so many of you encouraging me. Michelle, Gery and Sharon sitting with me so Bill could go to the grocery store etc. Sandy and Denny making us dinners, sitting with me also. My sister Cheri flying in for a week to see for herself that I was okay. Today, with all this help, I feel I have made pretty much a full recovery from my brain surgery. A surgery that was to have me in the hospital for 3 to 5 days but ended up being there for 26 days. Several of those that I have no memory of. Just what Bill, Kristi and Kerri tell me about. Some of it funny. Like singing "Oh Holy Night" to Sasha, looking for Jakob, seeing Ana and Ellie playing a game, telling Bill and Kristi to shut up so I could sleep, repeating the same word over and over and a lot more. Some not so funny. Like pulling out my feeding tube, pulling out my IV's, relying on the nurses to move me around in the bed. Some I don't want to remember. But today because of all these could nots and all of these cans, I am where I am. Able to function normally. What I call normal. Bill may have comments on that. :).
Had a follow up appointment with Dr. Sarriera today, November 19th. I am now taking Thalidomide every day with no week off. Not too sure I am happy about that. This chemo pill makes me so fatigued every day. No energy. So hard to get moving. Dr. Sarriera says more exercise. I also will be taking Dex once a week. I have a mild rash which we are sure is coming from the Thalidomide. I have always got a light rash from the Dex but that would disappear in a day or so. This rash doesn't seem to want to disappear. It doesn't itch. Will watch to make sure it doesn't get worse. Also had labs drawn for CMP, CBC and Myeloma. Those results will be coming in to my portal day by day. The Myeloma results take longer. In fact, the one result takes almost a week. I go back to see Dr. Sarriera December 17th. Meanwhile, he and his staff will be watching the lab results.
Wish I could post pictures here so you could see, for those who haven't seen her, our new addition. Leeta. She's a 5 year old basset/terrier mixed rescue that we adopted about 1 1/2 weeks ago thanks to Kristi and Poodle and Pooch. Such a sweetheart. She's a keeper.
When Deb was here, we decided to make cookies. She would give me one when I accomplished something we had been working on. One day I got my slacks on myself. I was talking to mom on the phone using my right hand and Deb handed me a piece of a cookie in my left hand. I tried to get the cookie up to my mouth. Now remember I didn't have much control of that hand. Not happening. All Deb could do was laugh. Hand trying to get the cookie up to my mouth, head moving, mouth open. Not happening. Finally said goodbye to mom and put the cookie in my right hand and ate it. Sorry, no video. Thanks for that laugh and many more while you were here Deb.
Quote:
Life is a precious gift. We realize this when we are fighting cancer to stay alive.
Sunday, November 3, 2019
Nine
Day 10 of my Thalidomide and week 2 of the Dex. Just a few of the side effects. Rash from the Dex just like before. On my face mostly. Goes away. The worse problem is the tiredness. No energy. When I get up in the morning, I can't seem to get it together. Takes me most of the morning and a nap too start to feel okay. Then my day gets a little better. Some days it's an all day thing. Hate it. And this time change doesn't help. But I will continue taking the chemo pill hoping that it chases the Myeloma in my legs away. I have an appointment with Dr. Sarriera on Thursday, November 7th. Probably going to get hollared at for not starting the Thalidomide sooner. I had a good excuse. And I am behind on the blood work I think. Will get this all straighten out at my visit. Oh, the appointment is at 9 AM.
Bill is making good progress from his eye surgery. Bubble is dissipating more and more each day. Long process for him. But doing the best he can with one good eye.
Bill and I have been looking for a dog. Didn't want a puppy for sure. Kristi has been watching for us too. We decided to fill out an application to adopt with the rescue group Kristi works with, Poodle and Pooch. This way they have our app on file if a dog comes in we would be interested in. The person who receives the app called Bill and ask him how many dogs we had now. He said none. Well, on the app it said nine. Oops, slip of the finger. This person knows Kristi and she knew if we had nine dogs, Kristi would have told her.
Quote:
Being strong is the only choice I have while fighting this cancer. Cancer sucks.
Day 10 of my Thalidomide and week 2 of the Dex. Just a few of the side effects. Rash from the Dex just like before. On my face mostly. Goes away. The worse problem is the tiredness. No energy. When I get up in the morning, I can't seem to get it together. Takes me most of the morning and a nap too start to feel okay. Then my day gets a little better. Some days it's an all day thing. Hate it. And this time change doesn't help. But I will continue taking the chemo pill hoping that it chases the Myeloma in my legs away. I have an appointment with Dr. Sarriera on Thursday, November 7th. Probably going to get hollared at for not starting the Thalidomide sooner. I had a good excuse. And I am behind on the blood work I think. Will get this all straighten out at my visit. Oh, the appointment is at 9 AM.
Bill is making good progress from his eye surgery. Bubble is dissipating more and more each day. Long process for him. But doing the best he can with one good eye.
Bill and I have been looking for a dog. Didn't want a puppy for sure. Kristi has been watching for us too. We decided to fill out an application to adopt with the rescue group Kristi works with, Poodle and Pooch. This way they have our app on file if a dog comes in we would be interested in. The person who receives the app called Bill and ask him how many dogs we had now. He said none. Well, on the app it said nine. Oops, slip of the finger. This person knows Kristi and she knew if we had nine dogs, Kristi would have told her.
Quote:
Being strong is the only choice I have while fighting this cancer. Cancer sucks.
Sunday, October 27, 2019
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.
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 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.
Wednesday, September 25, 2019
Puddin Taine
Today, September 25th, was my appointment with Dr. Nanda, my radiologist. We had to go to the office in Ocoee. Took forever to get there. Only 15 miles but with traffic, took about 45 minutes.
When Dr. Nanda walked in to the room where we were, he shook our hands and then asked, "Do you live near here?" No. We took this appointment because otherwise, we would have had to wait until late October for an appointment at the Cancer enter. Computer was down but he knew my case and discussed my surgery, why we went that route, how I was feeling, and the next steps he wants to happen before I do any radiation. Most of these we knew would be the case. He wants me to heal some more. Then he wants me to have a MRI and a Pet Scan. The MRI is scheduled for October 1st. He wants to discuss my case with Dr. Sarriera. Said he was going to call him today. After the scans, I am to see him again on October 8th. By that time, he will have the scans to discuss with us and will have talked to Dr. Sarriera. At that appointment, we will discuss the radiation if this is the way we are to go. We know the Myeloma is lurking and need to stop it whether it is radiation and a new treatment plan with chemo. The chemo drug that Dr. Sarriera is proposing is Thalidomide. We just have to wait until the scans are done and we meet with Dr. Nanda again. We just need to stop it. Dr. Nanda is such a great person. Very soft spoken and a caring attitude. I mentioned to him that when I tap on my head where the surgery was that it sounds hollow. He started laughing and looked at Bill. Bill just said he wasn't going to get caught up in that laughing too.
And here are a few more "things" I have accomplished. Been in the pool, walked around pool with Sandy about 25 times. Went in to Pubix grocery store for the first time since before surgery. Getting in to and out of the shower by myself. Even sewed a bit. Little "things.
Monday is my last day with Kate, OT. Of all my therapists, home and in the hospital, Kate is my favorite. Will miss her. She suggested that I contact my Primary Care Physician and request a script for out patient therapy for a few more weeks. Can't do that until I have been discharged from Home Health Care. That will probably be the end of the first week of October.
Feeling a little bad for Sandy. She came down to help with me and I don't need a lot of help if any. Of course, when we first talked about her coming down to help, we had no idea that I would be so far along. My sister and Bill covered those first 3 weeks I was home pretty well. Other then walking more, not much else. I never thought I would be this far along. Nor did Bill. So she will just have a small vacation in Florida. We will work on walking though. And crocheting. :). That's good for my fingers. Denny and Sandy have been making us great meals so far though. Yum.
During my recovery period at the hospital and my not knowing a lot as what was going on, I was asked by a nurse in ICU what my name was. To which I responded, "Puddin Taine, ask me again and I'll tell you the same. I may have said this more than once to that question. Oh, the things I have been told that I said and did. I will be telling you more.
Quote:
I will fight this cancer, as I am determined to win.
Today, September 25th, was my appointment with Dr. Nanda, my radiologist. We had to go to the office in Ocoee. Took forever to get there. Only 15 miles but with traffic, took about 45 minutes.
When Dr. Nanda walked in to the room where we were, he shook our hands and then asked, "Do you live near here?" No. We took this appointment because otherwise, we would have had to wait until late October for an appointment at the Cancer enter. Computer was down but he knew my case and discussed my surgery, why we went that route, how I was feeling, and the next steps he wants to happen before I do any radiation. Most of these we knew would be the case. He wants me to heal some more. Then he wants me to have a MRI and a Pet Scan. The MRI is scheduled for October 1st. He wants to discuss my case with Dr. Sarriera. Said he was going to call him today. After the scans, I am to see him again on October 8th. By that time, he will have the scans to discuss with us and will have talked to Dr. Sarriera. At that appointment, we will discuss the radiation if this is the way we are to go. We know the Myeloma is lurking and need to stop it whether it is radiation and a new treatment plan with chemo. The chemo drug that Dr. Sarriera is proposing is Thalidomide. We just have to wait until the scans are done and we meet with Dr. Nanda again. We just need to stop it. Dr. Nanda is such a great person. Very soft spoken and a caring attitude. I mentioned to him that when I tap on my head where the surgery was that it sounds hollow. He started laughing and looked at Bill. Bill just said he wasn't going to get caught up in that laughing too.
And here are a few more "things" I have accomplished. Been in the pool, walked around pool with Sandy about 25 times. Went in to Pubix grocery store for the first time since before surgery. Getting in to and out of the shower by myself. Even sewed a bit. Little "things.
Monday is my last day with Kate, OT. Of all my therapists, home and in the hospital, Kate is my favorite. Will miss her. She suggested that I contact my Primary Care Physician and request a script for out patient therapy for a few more weeks. Can't do that until I have been discharged from Home Health Care. That will probably be the end of the first week of October.
Feeling a little bad for Sandy. She came down to help with me and I don't need a lot of help if any. Of course, when we first talked about her coming down to help, we had no idea that I would be so far along. My sister and Bill covered those first 3 weeks I was home pretty well. Other then walking more, not much else. I never thought I would be this far along. Nor did Bill. So she will just have a small vacation in Florida. We will work on walking though. And crocheting. :). That's good for my fingers. Denny and Sandy have been making us great meals so far though. Yum.
During my recovery period at the hospital and my not knowing a lot as what was going on, I was asked by a nurse in ICU what my name was. To which I responded, "Puddin Taine, ask me again and I'll tell you the same. I may have said this more than once to that question. Oh, the things I have been told that I said and did. I will be telling you more.
Quote:
I will fight this cancer, as I am determined to win.
Sunday, September 22, 2019
Down there
Using my left hand. So much better. My OT lady, Kate, keeps me exercising. She will be here tomorrow at 9 AM. Ugh. 9. :). I was reevaluated by the PT supervisor last week. He was very pleased with my progress. Did a few tests like close your eyes and stand on one foot. Okay. Anyway, he was pleased and recommend 3 more weeks of PT. Okay by me. The more I do, the better for me. Not sure about OT yet.
Have a few more "things" that I am very happy to tell everyone that I can do again. Shower pretty much myself, I walked in to the hair salon, walked in to a restaurant using my cane that the week before Bill pushed me in there with my wheelchair, straightened my closet so I can find my blouses, etc., crocheted a chain and did a few stitches, walked out in to the garage without even realizing what I was doing, still doing what I can with setting the table, loading dishwasher, "things" I couldn't do three weeks ago. Have met Gery and Michelle at restaurants several times, using cane, not using cane. We played "dimes" (Tripoly) for the first time in weeks. Did okay with shuffling the cards, dealing the cards, getting my winnings of dimes, holding the cards with the help of a card holder Bill got for me I am sure I missed some cards the should have been played. But the laughter makes up for any mistakes. Love playing dimes with Gery and Michelle. Sharon, Michelle's aunt, has been here . She leaves Friday. Such a wonderful lady. She sat with me a few times so Bill could have some free time. Next year when she comes for a visit, I hope to be able to run like we did two years ago.
Got a text from my friend Benn. He, like me, is running out of drugs to treat his Myeloma. Hoping and praying for a trial. These trials are harder than our transplants but if it keeps him alive, he feels he has to do it. I pray he finds one. I want him to be kept alive. Not ready to lose a good friend to myeloma. Pray for him and his.
Still have some tender spots where my incision is. They are healing nice. Just a few scabs (yuck, sorry) left. The area where surgeon put back together sounds hollow if I tap on it. I can't feel anything if I pull my hair or scratch in that area.
My appointment with Dr. Nanda is this Wednesday. He is the radiologist. Need to get this started as we know there are Myeloma lesions on my skull. He will order X-rays of my skull, make a mask, ask me to shave my head and then start the treatments. Will know more Wednesday.
Sandy and Denny come tomorrow and will be here for 3 weeks. She will be surprised to see how much I am able to do. Need her to help me walk more. And walk steadier. I still have a fear of tripping or falling. Then my sister, Cheri, will be here Oct 3rd till the 10th. Can't wait.
Bill makes me cotton balls with various oils on them for me to smell, lavender, frankensence, thieves, peppermint etc. While in the hospital so I would know where it was, I would put it down my nightgown. One of the nurses was listening to my heart and saw one of the cotton balls and said, "I wonder who put that down there?"
Quote:
The struggle you are in today develops the strength you need tomorrow. Everyday I challenge cancer and survive is a victory for me.
Using my left hand. So much better. My OT lady, Kate, keeps me exercising. She will be here tomorrow at 9 AM. Ugh. 9. :). I was reevaluated by the PT supervisor last week. He was very pleased with my progress. Did a few tests like close your eyes and stand on one foot. Okay. Anyway, he was pleased and recommend 3 more weeks of PT. Okay by me. The more I do, the better for me. Not sure about OT yet.
Have a few more "things" that I am very happy to tell everyone that I can do again. Shower pretty much myself, I walked in to the hair salon, walked in to a restaurant using my cane that the week before Bill pushed me in there with my wheelchair, straightened my closet so I can find my blouses, etc., crocheted a chain and did a few stitches, walked out in to the garage without even realizing what I was doing, still doing what I can with setting the table, loading dishwasher, "things" I couldn't do three weeks ago. Have met Gery and Michelle at restaurants several times, using cane, not using cane. We played "dimes" (Tripoly) for the first time in weeks. Did okay with shuffling the cards, dealing the cards, getting my winnings of dimes, holding the cards with the help of a card holder Bill got for me I am sure I missed some cards the should have been played. But the laughter makes up for any mistakes. Love playing dimes with Gery and Michelle. Sharon, Michelle's aunt, has been here . She leaves Friday. Such a wonderful lady. She sat with me a few times so Bill could have some free time. Next year when she comes for a visit, I hope to be able to run like we did two years ago.
Got a text from my friend Benn. He, like me, is running out of drugs to treat his Myeloma. Hoping and praying for a trial. These trials are harder than our transplants but if it keeps him alive, he feels he has to do it. I pray he finds one. I want him to be kept alive. Not ready to lose a good friend to myeloma. Pray for him and his.
Still have some tender spots where my incision is. They are healing nice. Just a few scabs (yuck, sorry) left. The area where surgeon put back together sounds hollow if I tap on it. I can't feel anything if I pull my hair or scratch in that area.
My appointment with Dr. Nanda is this Wednesday. He is the radiologist. Need to get this started as we know there are Myeloma lesions on my skull. He will order X-rays of my skull, make a mask, ask me to shave my head and then start the treatments. Will know more Wednesday.
Sandy and Denny come tomorrow and will be here for 3 weeks. She will be surprised to see how much I am able to do. Need her to help me walk more. And walk steadier. I still have a fear of tripping or falling. Then my sister, Cheri, will be here Oct 3rd till the 10th. Can't wait.
Bill makes me cotton balls with various oils on them for me to smell, lavender, frankensence, thieves, peppermint etc. While in the hospital so I would know where it was, I would put it down my nightgown. One of the nurses was listening to my heart and saw one of the cotton balls and said, "I wonder who put that down there?"
Quote:
The struggle you are in today develops the strength you need tomorrow. Everyday I challenge cancer and survive is a victory for me.
Monday, September 16, 2019
French fries
Hope I don't have as many mistakes with this post. Using my MAC again and my left hand is working a lot better than last post.
Have had PT several times a week. Today was his last day with mw. I will now be reevaluated by his supervisor. From there they will decide if I need more PT or need to go to an outpatient therapy facility. I still have several sessions left with my Occupational therapist. Then will also be reevaluated by her supervisor.
Deb sure did help me with my therapy exercises, making sure I took my meds, constantly
checking to make sure I locked my wheelchair before I stood, walking without my cane so much, showering, and on and on. Those 3 weeks she was here was just what I needed. My little sister to the rescue. Glad she was available. Glad she cared enough to leave her home and husband for 3 weeks to assist me. Sure makes it easier on me now. Ihave had a few tears since she left when doing some things that she helped me with.
I am able to use my left hand to pick up some things. Able to lift my left arm above my head. Have a bit more strength when holding on to things. Can wring out a wash cloth pretty good, have helped setting the table, loading the dishwasher, toast myself a muffin, put in earrings, dress and undress myself with minimal help, replace the paper towels, walk to the bathroom without my cane, use the wheelchair less and less, open an envelope, All these things that less than 3 weeks ago I couldn't do. Things I never thought about being difficult tasks. Frustration does present itself at times when trying to do certain things. Things that I know I was at one time able to do. Things I took for granted never thinking they would one day be difficult to accomplish. Things, just things. Things I will keep on working on. My next goal is to get in to that sewing room. I need that serenity again. I will get that serenity again. I say every day I am going to see what I can do as far as sewing goes but don't seem to make it happen. Guess I am a bit afraid I may fail and don't want that to happen. But I will soon make myself see I can sew even if it's just small pieces and not a quilt. I will you know in my own time. Has to be in my time and will be in my time. Meanwhile, Kerri is filling in for me. I am so proud of her picking up my love of sewing.
Ellie had a weekend camping trip this past weekend so Sasha came over to stay with Bill and me. She and I were going through the freezer to see if we had any French fries. There was some in there. But when Bill went to the store, he picked up another bag. With her Pap's help, they made shrimp scampi for dinner. This we served over linguine. A few hours after dinner, Sasha came running in to the living room hollering, "Pap, we forgot the French fries." Those who know Sasha, know she is quite the eater. To her having linguine and French fries together would be fine.
Quote:
Every accomplishment starts with the decision to try.
Hope I don't have as many mistakes with this post. Using my MAC again and my left hand is working a lot better than last post.
Have had PT several times a week. Today was his last day with mw. I will now be reevaluated by his supervisor. From there they will decide if I need more PT or need to go to an outpatient therapy facility. I still have several sessions left with my Occupational therapist. Then will also be reevaluated by her supervisor.
Deb sure did help me with my therapy exercises, making sure I took my meds, constantly
checking to make sure I locked my wheelchair before I stood, walking without my cane so much, showering, and on and on. Those 3 weeks she was here was just what I needed. My little sister to the rescue. Glad she was available. Glad she cared enough to leave her home and husband for 3 weeks to assist me. Sure makes it easier on me now. Ihave had a few tears since she left when doing some things that she helped me with.
I am able to use my left hand to pick up some things. Able to lift my left arm above my head. Have a bit more strength when holding on to things. Can wring out a wash cloth pretty good, have helped setting the table, loading the dishwasher, toast myself a muffin, put in earrings, dress and undress myself with minimal help, replace the paper towels, walk to the bathroom without my cane, use the wheelchair less and less, open an envelope, All these things that less than 3 weeks ago I couldn't do. Things I never thought about being difficult tasks. Frustration does present itself at times when trying to do certain things. Things that I know I was at one time able to do. Things I took for granted never thinking they would one day be difficult to accomplish. Things, just things. Things I will keep on working on. My next goal is to get in to that sewing room. I need that serenity again. I will get that serenity again. I say every day I am going to see what I can do as far as sewing goes but don't seem to make it happen. Guess I am a bit afraid I may fail and don't want that to happen. But I will soon make myself see I can sew even if it's just small pieces and not a quilt. I will you know in my own time. Has to be in my time and will be in my time. Meanwhile, Kerri is filling in for me. I am so proud of her picking up my love of sewing.
Ellie had a weekend camping trip this past weekend so Sasha came over to stay with Bill and me. She and I were going through the freezer to see if we had any French fries. There was some in there. But when Bill went to the store, he picked up another bag. With her Pap's help, they made shrimp scampi for dinner. This we served over linguine. A few hours after dinner, Sasha came running in to the living room hollering, "Pap, we forgot the French fries." Those who know Sasha, know she is quite the eater. To her having linguine and French fries together would be fine.
Quote:
Every accomplishment starts with the decision to try.
Saturday, September 7, 2019
Pants
I am back. first I will tell you that there will probably be a lot of mistakes in this update as I am typing this using my left hand too. My left hand that I wasn't even able to lift since after my surgery July 29th. My surgery to remove a tumor on my head. Sugrery that took 4 hours. A tumor that was larger then expected. A tumor. In addition, my surgeon removed other cancer growth. Surgery that left me unable to communicate for several days. surgery that Dr. Garcia, Bill, Kristi and Kerri were concerned where I was. Surgery that finally after 3 days and in the ICU, I responded to Bill. Bill who was constantly by my side days and nights Bill who played music that he knew I liked.Bill who called in to the nurses to see if they were using my oils. Bill, my rock. Bill, the love of my life. Bill who encourages me every day helping me to regain where I was before surgery. Along with him, Kristi would come to the hospital almost every day. Kristi, beinigng my support person during Physical Therapy. Kristi, my support person during Yoga. Kristi, my support person while I was eating my hospital meals (needed support to eat some of them lol). Kerri who called me every day to see how I ws DOING. Kerri who from far away sent her love via phone calls and texts. Kerri checking in with her sister and Dad to see how I was doing. Calls from my grandkids. pictures hung so I could see them from my bed. Pictures of Bill, Kristi, Kerri, all the grassndkids and my sweet, sweet Tommy. Bill, Kristi and Kerri having fun with my actions, shouting, during my ICU delirium , Will blog some day about what they told me.
26 days trying to convince them to let me go home to heal. Finally, I was released on August 23. Wheel chair, cane, shower chair. Home!!!
We lost our sweet Tommy on Sept 6th. we had him put down. He wasn't doing well for a bit. So skinny. We decided to have a vet come to the house to do this. She said his kidneys were so small. Sound of kidney failure. So hard to do. Sure do miss him. He would have been 15 in Feb. We got him and Chai 13 years ago. Bill and I felt Tommy was telling us it was time. Still hurts.
My sister Deb, at my request, came to help Bill and I. She got here August 26th. And boy, what a wonderful help she has been. I needed help with showers, bathroom visits, dressing, undressing. And Bill needed someone to relieve him. Give him a chance to go to the store, cook, dishes, laundry. All the things that I once did.
I have made great progress with Deb and Bill's help. My left hand no longer hangs like a wet noodle. I am able to lift it, make a fist, and although not perfect, able to use my laptop to type this biog. Someday, someday. I have physical therapy several times a week. I try to do my exercises every day that my therapist gave me. I am walking with my cane, using the wheel chair less and less. Dressing and undressing myself. Getting there, getting there.
Deb has been an awesome nurse. She helps me so much and has helped me get as far as I am. She goes home on the 13th. Bill said he's not so sure her will le her. :). Sorry Donnie. Deb wasn't sure how long we would need her and was willing to stay to whenever. Guess whenever is the 13th. We will miss her Helped us so much Thanks , thanks, thanks,
Again, hope you can make sense of this. Just wanted to update you all and exercise my left fingers. So glad I can use my laptop. So glad, I am able to walk again, even though I have to use a cane at times. So glad. Soglad. Prayers are being ANSWERED.
When Kristi was learning to walk, she would hold on to the side of her pants. When I was learning to walk again, she held on to the waist band of my pants.
Quote:
Cancer is a journey. Do not count the days, make the days count.
I am back. first I will tell you that there will probably be a lot of mistakes in this update as I am typing this using my left hand too. My left hand that I wasn't even able to lift since after my surgery July 29th. My surgery to remove a tumor on my head. Sugrery that took 4 hours. A tumor that was larger then expected. A tumor. In addition, my surgeon removed other cancer growth. Surgery that left me unable to communicate for several days. surgery that Dr. Garcia, Bill, Kristi and Kerri were concerned where I was. Surgery that finally after 3 days and in the ICU, I responded to Bill. Bill who was constantly by my side days and nights Bill who played music that he knew I liked.Bill who called in to the nurses to see if they were using my oils. Bill, my rock. Bill, the love of my life. Bill who encourages me every day helping me to regain where I was before surgery. Along with him, Kristi would come to the hospital almost every day. Kristi, beinigng my support person during Physical Therapy. Kristi, my support person during Yoga. Kristi, my support person while I was eating my hospital meals (needed support to eat some of them lol). Kerri who called me every day to see how I ws DOING. Kerri who from far away sent her love via phone calls and texts. Kerri checking in with her sister and Dad to see how I was doing. Calls from my grandkids. pictures hung so I could see them from my bed. Pictures of Bill, Kristi, Kerri, all the grassndkids and my sweet, sweet Tommy. Bill, Kristi and Kerri having fun with my actions, shouting, during my ICU delirium , Will blog some day about what they told me.
26 days trying to convince them to let me go home to heal. Finally, I was released on August 23. Wheel chair, cane, shower chair. Home!!!
We lost our sweet Tommy on Sept 6th. we had him put down. He wasn't doing well for a bit. So skinny. We decided to have a vet come to the house to do this. She said his kidneys were so small. Sound of kidney failure. So hard to do. Sure do miss him. He would have been 15 in Feb. We got him and Chai 13 years ago. Bill and I felt Tommy was telling us it was time. Still hurts.
My sister Deb, at my request, came to help Bill and I. She got here August 26th. And boy, what a wonderful help she has been. I needed help with showers, bathroom visits, dressing, undressing. And Bill needed someone to relieve him. Give him a chance to go to the store, cook, dishes, laundry. All the things that I once did.
I have made great progress with Deb and Bill's help. My left hand no longer hangs like a wet noodle. I am able to lift it, make a fist, and although not perfect, able to use my laptop to type this biog. Someday, someday. I have physical therapy several times a week. I try to do my exercises every day that my therapist gave me. I am walking with my cane, using the wheel chair less and less. Dressing and undressing myself. Getting there, getting there.
Deb has been an awesome nurse. She helps me so much and has helped me get as far as I am. She goes home on the 13th. Bill said he's not so sure her will le her. :). Sorry Donnie. Deb wasn't sure how long we would need her and was willing to stay to whenever. Guess whenever is the 13th. We will miss her Helped us so much Thanks , thanks, thanks,
Again, hope you can make sense of this. Just wanted to update you all and exercise my left fingers. So glad I can use my laptop. So glad, I am able to walk again, even though I have to use a cane at times. So glad. Soglad. Prayers are being ANSWERED.
When Kristi was learning to walk, she would hold on to the side of her pants. When I was learning to walk again, she held on to the waist band of my pants.
Quote:
Cancer is a journey. Do not count the days, make the days count.
Saturday, August 24, 2019
Never
Never
26 days. Where have I been? Well, most of them have been in Orlando Regional Medical Center (ORMC). The surgery I had on my tumor came with some complications. It was larger in size than anticipated. Surgery lasted 4 hours. Because of these complications, I am dealing with the loss of the left side of my body. Dr. Garcia is saying this will return as the brain heals. I had CT scans several days ago. They showed reduction in the hematoma but brain is still swollen. I had lots of therapy while in the hospital: physical therapy, occupational therapy, speech therapy. Bill and I will continue the exercises at home. We are waiting for home health care to meet with us to schedule therapists to come to our home. Meanwhile we struggle with getting me ready for bed, to the bathroom, dressed for the day, from chair to chair. My Left arm and hand just dangles so we have to have it in a sling or propped on a pillow. This is so frustrating not being able use this hand for things like opening envelopes, pulling up your clothes, grabbing for a glass of water.
I know Kristi has been by my bedside since surgery along with Bill. Supporting me with the therapy and being there when I just get frustrated and Sasha was a great neck massager. We now have new furniture in our house. Wheel chairs, cane, extra toilets. Lol. There is so much I would like to write about about but it’s hard to pull it out of my brain and hard to type it all out. I will catch up in the days to come.
Never did I think I would wake up after surgery not have use of the left side of my body. Thank you all for the well wishes, prayers and cards!
Got great news today that my sister Deb is coming on Monday to help us. She’ll be here for 2 weeks.
26 days. Where have I been? Well, most of them have been in Orlando Regional Medical Center (ORMC). The surgery I had on my tumor came with some complications. It was larger in size than anticipated. Surgery lasted 4 hours. Because of these complications, I am dealing with the loss of the left side of my body. Dr. Garcia is saying this will return as the brain heals. I had CT scans several days ago. They showed reduction in the hematoma but brain is still swollen. I had lots of therapy while in the hospital: physical therapy, occupational therapy, speech therapy. Bill and I will continue the exercises at home. We are waiting for home health care to meet with us to schedule therapists to come to our home. Meanwhile we struggle with getting me ready for bed, to the bathroom, dressed for the day, from chair to chair. My Left arm and hand just dangles so we have to have it in a sling or propped on a pillow. This is so frustrating not being able use this hand for things like opening envelopes, pulling up your clothes, grabbing for a glass of water.
I know Kristi has been by my bedside since surgery along with Bill. Supporting me with the therapy and being there when I just get frustrated and Sasha was a great neck massager. We now have new furniture in our house. Wheel chairs, cane, extra toilets. Lol. There is so much I would like to write about about but it’s hard to pull it out of my brain and hard to type it all out. I will catch up in the days to come.
Never did I think I would wake up after surgery not have use of the left side of my body. Thank you all for the well wishes, prayers and cards!
Got great news today that my sister Deb is coming on Monday to help us. She’ll be here for 2 weeks.
Tuesday, August 13, 2019
Another Update
Recovery is taking longer than any of us expected but all the doctors and nurses say this is normal while her brain heals. I’m sure she’ll share all the details with you when she’s ready.
She is currently on the rehab floor at the hospital. She’s working with speech, occupational and physical therapies for hours every day. And boy do they make her work!
She wants to go home so badly but she needs to regain her strength. We all know her determination will get her there!
She is currently on the rehab floor at the hospital. She’s working with speech, occupational and physical therapies for hours every day. And boy do they make her work!
She wants to go home so badly but she needs to regain her strength. We all know her determination will get her there!
Sunday, August 4, 2019
Belated Surgery Update!
Hi all! Kathy's daughter Kristi, here.
So sorry for no updates on her surgery but it took me some time to get to mom's blog.
Mom's plasmacytoma was larger than they originally thought and surgery lasted 4 hours. Her recovery has taken much longer than anticipated as her brain heals from the trauma of this surgery. I'll let mom share all the details (or wait for her permission to share them) but please know that she is getting the best care.
We see improvements every single day and sometimes every hour! Today was the best day yet and we can't wait to see what tomorrow brings. She is still in the ICU but her doctor is not concerned by anything and said that we need to be patient. Easier said than done, right!?!?
We appreciate your love/prayers/meditations/healing energy! We will take it all!
We've been reading texts and messages to her so feel free to comment and we will share with her!
The picture is of her daughters, Kristi and Kerri and her husband Bill up to no good while they waited for her in surgery!
So sorry for no updates on her surgery but it took me some time to get to mom's blog.
Mom's plasmacytoma was larger than they originally thought and surgery lasted 4 hours. Her recovery has taken much longer than anticipated as her brain heals from the trauma of this surgery. I'll let mom share all the details (or wait for her permission to share them) but please know that she is getting the best care.
We see improvements every single day and sometimes every hour! Today was the best day yet and we can't wait to see what tomorrow brings. She is still in the ICU but her doctor is not concerned by anything and said that we need to be patient. Easier said than done, right!?!?
We appreciate your love/prayers/meditations/healing energy! We will take it all!
We've been reading texts and messages to her so feel free to comment and we will share with her!
The picture is of her daughters, Kristi and Kerri and her husband Bill up to no good while they waited for her in surgery!
Saturday, July 27, 2019
Turkey
Well, I am finally cleared for surgery Monday, July 29th. And by clear I mean it was touch and go for a bit this past week. From what Bill and I understood, all was set for the 29th. Then I get a call saying that Dr. Garcia didn't realize that I didn't have the right MRI for my surgery. Huh? I needed a Stealth Navigation MRI. Does that mean I am getting a car? I know, a lot of you don't even know what a Stealth is. It's a Dodge Stealth. Look it up.
Anyway, a Stealth MRI is a MRI that takes pictures 1 milliliter level at a time. This makes it easier for the surgeon to read during surgery. A regular MRI takes pictures 5 milliliter levels at a time. So I find this out Thursday. The surgeons office was able to get me an appointment for this special MRI on Friday. And oh by the way, you have to be at the ORMC (hospital) at 6:30 AM for a 7 AM appointment. So we don't have much choice as surgery is Monday. And as you know, I will have to take an Ativan because of being claustrophobic. All that is great but the Ativan usually knocks me out the rest of the day and we have a pre admission testing appointment at 1 PM Friday.
Got through the Stealth MRI, came home and rested a bit and back on the road to my pre admission appointment. About ready to get out of the car and I get a call from Debra from Dr. Garcia's office. She is telling me that surgery can't go on because the hospital called saying that my insurance company has not approved my surgery. Wait, it's the Friday before my surgery and I am just getting this call. My PCP's office had told me and Debra that I didn't need an approval as I have a PPO. Apparently they were wrong. So I am on the phone to my PCP's office while walking in to my pre admission appointment. And Debra informed me that she was leaving at 3 that day and needed the approval before she left. Finally, while waiting on our appointment to start, we got this all straightened out. Please nothing else.
But we then waited 1 hour in a room for our nurse to come in to do her thing. We were at the point that we wanted to walk out. Bill finally opened the door to our room in case they just forgot we were there. Finally, nurse Nadine came in. Well, this woman needed an attitude adjustment. Came in, no hello, tossing papers down on the desk, then shuffling them here and there. Throwing questions at me about medical clearance, labs, EKG, just on and on. Information that was to be faxed to them from Dr. Garcia's office and I know it was. It got to the point that Bill finally just got up and left. She said she need to draw labs to test for my blood type. Drew 5 vials and only needed 2. On the phone to my PCP's office. Just plain rude. Finally got through that and gathered up Bill in the waiting room and headed home. I don't know what kept me from it but the tears were about ready to flow. We will find out where we can make a complaint.
Finally home where we knew we were going to have Kerri, Ana, Kristi, Sasha and Ellie here for a spaghetti dinner. Thank you Kerri for being my cook that day. Was nice to be surrounded by our girls.
And today, we had crab legs at Kristi and Matt's. 15 lbs for me, Mom, Kristi, Kerri and Sasha. And we ate most of them. The rest of them had chicken and mac and cheese.
All this because I will be going for surgery on my head to remove this plasmacytoma tumor on Monday, July 29th. All this because I wanted to have family time with as many as I could before surgery. Would have loved to have Paul, Jakob, Kristopher, Leah, Chad and Layton here too. I know all will be fine but I needed them here; as many as I could! And I am here to say, I am scared.
So the MRI tech explained what the difference was between the regular MRI and the Stealth MRI and the two levels. Then he said, it's like when you get turkey from the deli, either thin sliced or thick sliced. Made sense then.
Quote:
Someone said I don't know how you do it. I said I wasn't given a choice.
Well, I am finally cleared for surgery Monday, July 29th. And by clear I mean it was touch and go for a bit this past week. From what Bill and I understood, all was set for the 29th. Then I get a call saying that Dr. Garcia didn't realize that I didn't have the right MRI for my surgery. Huh? I needed a Stealth Navigation MRI. Does that mean I am getting a car? I know, a lot of you don't even know what a Stealth is. It's a Dodge Stealth. Look it up.
Anyway, a Stealth MRI is a MRI that takes pictures 1 milliliter level at a time. This makes it easier for the surgeon to read during surgery. A regular MRI takes pictures 5 milliliter levels at a time. So I find this out Thursday. The surgeons office was able to get me an appointment for this special MRI on Friday. And oh by the way, you have to be at the ORMC (hospital) at 6:30 AM for a 7 AM appointment. So we don't have much choice as surgery is Monday. And as you know, I will have to take an Ativan because of being claustrophobic. All that is great but the Ativan usually knocks me out the rest of the day and we have a pre admission testing appointment at 1 PM Friday.
Got through the Stealth MRI, came home and rested a bit and back on the road to my pre admission appointment. About ready to get out of the car and I get a call from Debra from Dr. Garcia's office. She is telling me that surgery can't go on because the hospital called saying that my insurance company has not approved my surgery. Wait, it's the Friday before my surgery and I am just getting this call. My PCP's office had told me and Debra that I didn't need an approval as I have a PPO. Apparently they were wrong. So I am on the phone to my PCP's office while walking in to my pre admission appointment. And Debra informed me that she was leaving at 3 that day and needed the approval before she left. Finally, while waiting on our appointment to start, we got this all straightened out. Please nothing else.
But we then waited 1 hour in a room for our nurse to come in to do her thing. We were at the point that we wanted to walk out. Bill finally opened the door to our room in case they just forgot we were there. Finally, nurse Nadine came in. Well, this woman needed an attitude adjustment. Came in, no hello, tossing papers down on the desk, then shuffling them here and there. Throwing questions at me about medical clearance, labs, EKG, just on and on. Information that was to be faxed to them from Dr. Garcia's office and I know it was. It got to the point that Bill finally just got up and left. She said she need to draw labs to test for my blood type. Drew 5 vials and only needed 2. On the phone to my PCP's office. Just plain rude. Finally got through that and gathered up Bill in the waiting room and headed home. I don't know what kept me from it but the tears were about ready to flow. We will find out where we can make a complaint.
Finally home where we knew we were going to have Kerri, Ana, Kristi, Sasha and Ellie here for a spaghetti dinner. Thank you Kerri for being my cook that day. Was nice to be surrounded by our girls.
And today, we had crab legs at Kristi and Matt's. 15 lbs for me, Mom, Kristi, Kerri and Sasha. And we ate most of them. The rest of them had chicken and mac and cheese.
All this because I will be going for surgery on my head to remove this plasmacytoma tumor on Monday, July 29th. All this because I wanted to have family time with as many as I could before surgery. Would have loved to have Paul, Jakob, Kristopher, Leah, Chad and Layton here too. I know all will be fine but I needed them here; as many as I could! And I am here to say, I am scared.
So the MRI tech explained what the difference was between the regular MRI and the Stealth MRI and the two levels. Then he said, it's like when you get turkey from the deli, either thin sliced or thick sliced. Made sense then.
Quote:
Someone said I don't know how you do it. I said I wasn't given a choice.
Friday, July 19, 2019
Bananas, sunrise, chair.
I have had a few days of no appointments, no chemo, no lab draws. This felt great. Had to go for Myeloma labs on July 10th for appointment with Dr. Sarriera on the 18th. Then on July 15th, I had labs and EKG for my surgical clearance appointment with Dr Henley (my PCP) on July 19th.
Meanwhile as I waited for appointments, my feet and ankles started to swell. And boy did they swell. Contacted Dr. Sarriera and he prescribed Lasix. One pill a day for 10 days. Finally, after 8 days, my ankles and feet look normal. Left one still swells some but nothing like it had.
Was so glad I had an appointment with Dr. Sarriera before surgery. Just needed his feelings on our decision. My Lambda light chains continue to go up. Last time was 17 and this time 21. Dr. Sarriera feels this will go down once the tumor is removed. My platelets did go up, which is a good "up". 94 from the 26 several weeks ago. My M spike is still staying constant at .01. So mostly all good numbers. Dr. Sarriera doesn't always show what he is thinking on his face. There are times, when he walked in smiling, that we knew we had good news. Those times were times we cherished. He asked us about our visit to the neurosurgeon, Dr. Garcia. Told him about what transpired during the 45 minute appointment. Then told him of our decision to go with surgery and possible radiation after a period of healing. Wasn't too sure of his feelings about this at first. Didn't feel he was happy with that decision. But as we talked more about it, I felt he was on board with us. We, once again, discussed the 3 options. Option 1 - Continue trying different chemos knowing that all the others over the last 3 years had failed. So felt this option was out until the tumor was removed. Hoping the surgery and possible radiation will remove what Myeloma is there. Option 2 - Just radiation on the area of the tumor. This, as we know, worked on the area it was focused on before but a lump came up before radiation was finished. And several lumps and a mass in near my spine over the 3 years. Option 3 - Surgery to removed the tumor and possible radiation once I have healed from the surgery.
I asked him who would make the decision if I had to have radiation. His answer was it would be something Dr. Nanda and he would decided once healed. Discussed a bit more about the surgery. He did an exam of me which included measuring the tumor. He noted it had grown. Wants me to come back in 4 weeks.
Dr. Sarriera wants to repeat all base line reports after surgery. Thus, Pet Scan, CT scans, bone marrow biopsy, MRIs etc. He then told us if and when, more like when, surgery, radiation and tests are done, he wants to try me on a chemo drug called Thalidomide. It was a first-line treatment for Multiple Myeloma in combination with Dex. This chemo drug was the main drug until Revlimid came about. He then asked if we needed anything more from him, wished me luck, shook our hands and left.
July 15th was my lab draw and EKG at my PCP's office to be discussed at my surgery clearance appointment on July 19th. Met with Dr. Henley on the 19th. We reviewed my labs, all good except my sugar level. This will not caused problems for surgery. All other labs and EKG good. She asked me how I was feeling. Told her I was anxious about the surgery and hope I made the right decision. I then told her the 3 options and the reasons behind each. Dr. Henley will write up notes of our visit and her recommendation to allow surgery and fax to Dr. Garcia's office. This is the one thing I have been waiting on to be completed. Worried as I was about this info getting to Dr. Garcia, I mentioned it several times throughout my appointment with her and her staff. And since this office is in tune to their patients, I got a call several hours later they had sent all info to Dr. Garcia's office and not to worry. :).
So all this means that my surgery is scheduled for July 29th. Surgery starts at 7:30 but we have to be at the hospital at 5 AM. And me being such a morning person. But, I will have Bill and our two daughters with me. Yes, two daughters. Kerri and Ana are flying in next week for Kerri to be with me. Something I really wanted. Makes my heart happy. I know all will go well but just something I wanted. Just something I needed. My two daughters.
I received news this week about two of my friends. Not good news. One, I just recently met. One who just recently had a bone marrow transplant. One who has Myeloma. So bubbly, so sweet. She has what is called Gliomatosis cerebri. This is a rare brain tumor that spreads very quickly and is very difficult to treat with radiation or surgery. Her team of doctors are sending her to NCI in Maryland to help make a plan for her. My other friend was just diagnosed with breast cancer. She will need chemo and it's possible that she may have to have a double mastectomy. Things are up in the air for her until she sees the oncologist next week. So as she says and I so know what she means, CANCER SUCKS. Please keep my friends and all of us who have cancer, in your prayers.
If I don't post before surgery, I will try to post as soon as I can. Or have Kristi post a bit of an update.
Today at my appointment with Dr. Henley, I was given a paper that I was told to fill out. Well, there was nothing on there to fill out but I noticed this sheet of paper had info that the nurse was to question me on during my exam. Like draw a clock and then add the hands to the clock to show 11:10. Say three words to the patient and have them repeat them back. Then in about 10 minutes, ask them them to repeat the three words again. So I decided to memorize them. Hey, it was their fault they gave me the wrong paper right??? The three words were bananas, sunrise and chair. See I still remember them.
Quote:
Accept the reality, embrace the pain and find the courage to move forward one day at a time is the only way to beat cancer.
I have had a few days of no appointments, no chemo, no lab draws. This felt great. Had to go for Myeloma labs on July 10th for appointment with Dr. Sarriera on the 18th. Then on July 15th, I had labs and EKG for my surgical clearance appointment with Dr Henley (my PCP) on July 19th.
Meanwhile as I waited for appointments, my feet and ankles started to swell. And boy did they swell. Contacted Dr. Sarriera and he prescribed Lasix. One pill a day for 10 days. Finally, after 8 days, my ankles and feet look normal. Left one still swells some but nothing like it had.
Was so glad I had an appointment with Dr. Sarriera before surgery. Just needed his feelings on our decision. My Lambda light chains continue to go up. Last time was 17 and this time 21. Dr. Sarriera feels this will go down once the tumor is removed. My platelets did go up, which is a good "up". 94 from the 26 several weeks ago. My M spike is still staying constant at .01. So mostly all good numbers. Dr. Sarriera doesn't always show what he is thinking on his face. There are times, when he walked in smiling, that we knew we had good news. Those times were times we cherished. He asked us about our visit to the neurosurgeon, Dr. Garcia. Told him about what transpired during the 45 minute appointment. Then told him of our decision to go with surgery and possible radiation after a period of healing. Wasn't too sure of his feelings about this at first. Didn't feel he was happy with that decision. But as we talked more about it, I felt he was on board with us. We, once again, discussed the 3 options. Option 1 - Continue trying different chemos knowing that all the others over the last 3 years had failed. So felt this option was out until the tumor was removed. Hoping the surgery and possible radiation will remove what Myeloma is there. Option 2 - Just radiation on the area of the tumor. This, as we know, worked on the area it was focused on before but a lump came up before radiation was finished. And several lumps and a mass in near my spine over the 3 years. Option 3 - Surgery to removed the tumor and possible radiation once I have healed from the surgery.
I asked him who would make the decision if I had to have radiation. His answer was it would be something Dr. Nanda and he would decided once healed. Discussed a bit more about the surgery. He did an exam of me which included measuring the tumor. He noted it had grown. Wants me to come back in 4 weeks.
Dr. Sarriera wants to repeat all base line reports after surgery. Thus, Pet Scan, CT scans, bone marrow biopsy, MRIs etc. He then told us if and when, more like when, surgery, radiation and tests are done, he wants to try me on a chemo drug called Thalidomide. It was a first-line treatment for Multiple Myeloma in combination with Dex. This chemo drug was the main drug until Revlimid came about. He then asked if we needed anything more from him, wished me luck, shook our hands and left.
July 15th was my lab draw and EKG at my PCP's office to be discussed at my surgery clearance appointment on July 19th. Met with Dr. Henley on the 19th. We reviewed my labs, all good except my sugar level. This will not caused problems for surgery. All other labs and EKG good. She asked me how I was feeling. Told her I was anxious about the surgery and hope I made the right decision. I then told her the 3 options and the reasons behind each. Dr. Henley will write up notes of our visit and her recommendation to allow surgery and fax to Dr. Garcia's office. This is the one thing I have been waiting on to be completed. Worried as I was about this info getting to Dr. Garcia, I mentioned it several times throughout my appointment with her and her staff. And since this office is in tune to their patients, I got a call several hours later they had sent all info to Dr. Garcia's office and not to worry. :).
So all this means that my surgery is scheduled for July 29th. Surgery starts at 7:30 but we have to be at the hospital at 5 AM. And me being such a morning person. But, I will have Bill and our two daughters with me. Yes, two daughters. Kerri and Ana are flying in next week for Kerri to be with me. Something I really wanted. Makes my heart happy. I know all will go well but just something I wanted. Just something I needed. My two daughters.
I received news this week about two of my friends. Not good news. One, I just recently met. One who just recently had a bone marrow transplant. One who has Myeloma. So bubbly, so sweet. She has what is called Gliomatosis cerebri. This is a rare brain tumor that spreads very quickly and is very difficult to treat with radiation or surgery. Her team of doctors are sending her to NCI in Maryland to help make a plan for her. My other friend was just diagnosed with breast cancer. She will need chemo and it's possible that she may have to have a double mastectomy. Things are up in the air for her until she sees the oncologist next week. So as she says and I so know what she means, CANCER SUCKS. Please keep my friends and all of us who have cancer, in your prayers.
If I don't post before surgery, I will try to post as soon as I can. Or have Kristi post a bit of an update.
Today at my appointment with Dr. Henley, I was given a paper that I was told to fill out. Well, there was nothing on there to fill out but I noticed this sheet of paper had info that the nurse was to question me on during my exam. Like draw a clock and then add the hands to the clock to show 11:10. Say three words to the patient and have them repeat them back. Then in about 10 minutes, ask them them to repeat the three words again. So I decided to memorize them. Hey, it was their fault they gave me the wrong paper right??? The three words were bananas, sunrise and chair. See I still remember them.
Quote:
Accept the reality, embrace the pain and find the courage to move forward one day at a time is the only way to beat cancer.
Monday, July 8, 2019
Snowberger
Tonight, July 8th, was our support group meeting. Had a remote speaker from Cleveland Clinic in Ohio. Benn and his son coordinated the speaker and the bluetooth equipment. Did a great job. Benn now thinks he could be a game show host. That's Benn!!! At our last support group meeting, I invited another Myeloma patient I met at UF Health Cancer Center previously. Barb. She was very energetic and bubbly. Just had her bone marrow transplant about 3 months ago. Today she IM'd me that her MRI showed something suspicious on her head. They had Barb go immediately to ORMC (Orlando Regional Medical Center) hospital for observation and possible biopsy. I will know more hopefully tomorrow. Good luck and lots of prayers sent your way Barb.
Last I posted was June 28th. Several things have happened since then. I finished all the Panobinostat. But when it came time for my Kyprolis, July 2nd & 3rd, I was not able to have these treatments because my platelets were down to 25. Had a few other side effects too.
Next since I posted last, I had an appointment with the neurosurgeon, Dr. Garcia, scheduled for July 5th at 9 AM. I received a call from Dr. Garcia, personally, asking me if I could come in at 7 AM instead of 9. What?? I asked him what were my alternatives? I could wait until Thursday, July 11th for his next available appointment. I knew having to wait almost another week was not what I wanted to do. Took the 7 AM appointment. His office manager, Diane, met us there at 7 AM, Friday, July 5th, gathered all the the paperwork, made coffee (for Bill?), and put us in an exam room to wait for Dr. Garcia. Dr. Garcia came in, introduced himself and gathered info via conversation with Bill and me. He pulled up my MRI brain scan and we discussed my options with him. He also did an exam of me and the tumor (plasmacytoma) on my head. Dr. Garcia spent at least 40-45 minutes with us. His recommendation was to have the tumor removed as it continues to grow and have it removed sooner than later. The surgery would be followed by radiation several weeks after the skull has healed. Surgery would about 3 to 4 hours. There will be a piece of mesh titanium placed in the skull. I would be in intensive care for probably just a day, then 2 to 3 days in the hospital. He left us saying think it over and get back to them Monday or Tuesday of this week.
This was one of the options that Dr. Roy from Mayo had recommended. One of the options we had discussed with Dr. Sarriera. Bill and I discussed all this and came to the conclusion this was the best way to go. The chemo meds are making my platelets drop, I have several side effects from them and they are not shrinking my tumor because I can't stay on them long enough to see if they can shrink the tumor. Radiation only, one of the other options, is localized and only covers a certain area. Last time I had radiation, a small tumor popped up that was not in the radiation field. This happened during the very last radiation treatment.
After many phone calls and much ado, I am penciled in to have surgery on July 29th. Penciled because I have to get a medical clearance from our primary care physician, get insurance approvals etc. I have an appointment with our PCP (primary care physician) on July 15th for an EKG and labs. Then an appointment to see Dr. Young, our PCP, on July 19th. Also, I have an appointment to see Dr. Sarriera on July 18th. Phew!!! But as of now, I am not going to take any chemo drugs, infusions, etc. Waiting to hear from Dr. Sarriera about this. This is a decision I made to help prepare for surgery. Need to get those platelets back up.
One of the papers I had to fill out asked for two persons the surgical group would be allowed to give information on me if they requested it from whatever reason. The first name I put down was Kathy Snowberger. Huh? That's me. The second name I put down was Kristine Snowberger. Huh? She's been married for how long now? Okay. It was 7 AM in the morning the day after the 4th. These fireworks around here go on forever. Just asked Sandy and Denny.
Quote:
Cancer is a reminder that life is really precious.
Tonight, July 8th, was our support group meeting. Had a remote speaker from Cleveland Clinic in Ohio. Benn and his son coordinated the speaker and the bluetooth equipment. Did a great job. Benn now thinks he could be a game show host. That's Benn!!! At our last support group meeting, I invited another Myeloma patient I met at UF Health Cancer Center previously. Barb. She was very energetic and bubbly. Just had her bone marrow transplant about 3 months ago. Today she IM'd me that her MRI showed something suspicious on her head. They had Barb go immediately to ORMC (Orlando Regional Medical Center) hospital for observation and possible biopsy. I will know more hopefully tomorrow. Good luck and lots of prayers sent your way Barb.
Last I posted was June 28th. Several things have happened since then. I finished all the Panobinostat. But when it came time for my Kyprolis, July 2nd & 3rd, I was not able to have these treatments because my platelets were down to 25. Had a few other side effects too.
Next since I posted last, I had an appointment with the neurosurgeon, Dr. Garcia, scheduled for July 5th at 9 AM. I received a call from Dr. Garcia, personally, asking me if I could come in at 7 AM instead of 9. What?? I asked him what were my alternatives? I could wait until Thursday, July 11th for his next available appointment. I knew having to wait almost another week was not what I wanted to do. Took the 7 AM appointment. His office manager, Diane, met us there at 7 AM, Friday, July 5th, gathered all the the paperwork, made coffee (for Bill?), and put us in an exam room to wait for Dr. Garcia. Dr. Garcia came in, introduced himself and gathered info via conversation with Bill and me. He pulled up my MRI brain scan and we discussed my options with him. He also did an exam of me and the tumor (plasmacytoma) on my head. Dr. Garcia spent at least 40-45 minutes with us. His recommendation was to have the tumor removed as it continues to grow and have it removed sooner than later. The surgery would be followed by radiation several weeks after the skull has healed. Surgery would about 3 to 4 hours. There will be a piece of mesh titanium placed in the skull. I would be in intensive care for probably just a day, then 2 to 3 days in the hospital. He left us saying think it over and get back to them Monday or Tuesday of this week.
This was one of the options that Dr. Roy from Mayo had recommended. One of the options we had discussed with Dr. Sarriera. Bill and I discussed all this and came to the conclusion this was the best way to go. The chemo meds are making my platelets drop, I have several side effects from them and they are not shrinking my tumor because I can't stay on them long enough to see if they can shrink the tumor. Radiation only, one of the other options, is localized and only covers a certain area. Last time I had radiation, a small tumor popped up that was not in the radiation field. This happened during the very last radiation treatment.
After many phone calls and much ado, I am penciled in to have surgery on July 29th. Penciled because I have to get a medical clearance from our primary care physician, get insurance approvals etc. I have an appointment with our PCP (primary care physician) on July 15th for an EKG and labs. Then an appointment to see Dr. Young, our PCP, on July 19th. Also, I have an appointment to see Dr. Sarriera on July 18th. Phew!!! But as of now, I am not going to take any chemo drugs, infusions, etc. Waiting to hear from Dr. Sarriera about this. This is a decision I made to help prepare for surgery. Need to get those platelets back up.
One of the papers I had to fill out asked for two persons the surgical group would be allowed to give information on me if they requested it from whatever reason. The first name I put down was Kathy Snowberger. Huh? That's me. The second name I put down was Kristine Snowberger. Huh? She's been married for how long now? Okay. It was 7 AM in the morning the day after the 4th. These fireworks around here go on forever. Just asked Sandy and Denny.
Quote:
Cancer is a reminder that life is really precious.
Friday, June 28, 2019
Dr. Sarriera
'today, June 28th, I had my MRI of my brain. Thank goodness for Ativan. Even the open MRI machine puts me in panic mode. Got through it okay. So noisy. Actually slept through some of it. 45 minutes of banging, tapping, hammering. Had my head in a cage to keep me from moving it. Ativan helped me through that part for sure. Asked for a CD at the end. Now we have to give the CD to the surgeon. That appointment is July 5th. Dr. Garcia. Also a part of the Orlando Health complex. Then from that appointment, we have to decide what is next. Radiation, surgery with possible radiation or continue on the Panobinostat hoping the tumor with shrink.
Took another Panobinostat today,Thursday, June 27th. Have one more to go. So far so good. Side effects are minimal. Keeping them check with some over the counter meds. After tomorrow, I will be off them for 2 weeks. I have to finish my two days of Kyprolis Tuesday and Wednesday. Dex Tuesday.
Very tired still. Hope this all passes with a good nights sleep. Heading there soon. Just a small update till I see the surgeon.
Hope you all have a happy 4th. We will be celebrating with Michelle and Gery, Sandy and Denny, Susie and Gary. So happy for Sandy and Denny to be here. Friends make up our lives especially when they are "old" friends. Their company and our beautiful new friends we could do without, Michelle and Gery, will make me forget for a day about my Multiple Myeloma. Plus add in the mix, Susie and Gary. Good day!!! Anxious for it to get here.
Each time you go to 5LP you have to sign in. This is the lab draw floor and treatment room floor. Same questions all the time. Date, appointment time, arrival time, have a port, seeing the doctor today, your name and your doctor's name. So today, I put Dr. Sarriers's name in place of mine. I scratched it out and put mine. It was YoYo's turn to call someone back. I heard her say Dr. Sarriera's name and thought - oh, he must be in the treatment rooms and they are looking for him, Then I heard laughter at the desk and my name said. They were all laughing as I walked up. Fun peopled. They make you forget a bit. They make you feel part of their group. Wonderful.
Quote:
You got what it takes but this cancer journey takes everything you got.
'today, June 28th, I had my MRI of my brain. Thank goodness for Ativan. Even the open MRI machine puts me in panic mode. Got through it okay. So noisy. Actually slept through some of it. 45 minutes of banging, tapping, hammering. Had my head in a cage to keep me from moving it. Ativan helped me through that part for sure. Asked for a CD at the end. Now we have to give the CD to the surgeon. That appointment is July 5th. Dr. Garcia. Also a part of the Orlando Health complex. Then from that appointment, we have to decide what is next. Radiation, surgery with possible radiation or continue on the Panobinostat hoping the tumor with shrink.
Took another Panobinostat today,Thursday, June 27th. Have one more to go. So far so good. Side effects are minimal. Keeping them check with some over the counter meds. After tomorrow, I will be off them for 2 weeks. I have to finish my two days of Kyprolis Tuesday and Wednesday. Dex Tuesday.
Very tired still. Hope this all passes with a good nights sleep. Heading there soon. Just a small update till I see the surgeon.
Hope you all have a happy 4th. We will be celebrating with Michelle and Gery, Sandy and Denny, Susie and Gary. So happy for Sandy and Denny to be here. Friends make up our lives especially when they are "old" friends. Their company and our beautiful new friends we could do without, Michelle and Gery, will make me forget for a day about my Multiple Myeloma. Plus add in the mix, Susie and Gary. Good day!!! Anxious for it to get here.
Each time you go to 5LP you have to sign in. This is the lab draw floor and treatment room floor. Same questions all the time. Date, appointment time, arrival time, have a port, seeing the doctor today, your name and your doctor's name. So today, I put Dr. Sarriers's name in place of mine. I scratched it out and put mine. It was YoYo's turn to call someone back. I heard her say Dr. Sarriera's name and thought - oh, he must be in the treatment rooms and they are looking for him, Then I heard laughter at the desk and my name said. They were all laughing as I walked up. Fun peopled. They make you forget a bit. They make you feel part of their group. Wonderful.
Quote:
You got what it takes but this cancer journey takes everything you got.
Thursday, June 20, 2019
Lightning
Wow, the crepe myrtles are in full bloom. Whites, reds, pinks, purples. A lot of the medians of the roads we travel are loaded with them. Michelle and Gery have a white one that waves to us in the wind. Hope they are in bloom when Sandy and Denny come down. Ours that Sandy and Denny got us, bloomed last year but not seeing much yet this year. Beautiful, beautiful!
Had a few side effects from the chemo pill Panobinostat. First, I had edema. My feet, ankles and legs swelled up like mini balloons. Soaked them in Epsom salts and then applied Juniper oil with coconut oil. This lasted a few days. Then had GI problems. Not good. Then my platelets dropped and Dr. Sarriera took me off the Panobinostat. He then dropped the dosage for me to start again. Started the treatment again. Some thing happened and was taken off the Panobinostat again. Platelets dropping is not a good thing.
Back on the Panobinostat treatment plan once again. Had my Kyprolis drip on Tuesday along with my Dex and Kyprolis again on Wednesday. Took my first Panobinostat on Tuesday. Took my second on today, Thursday, June 20th. Then I will take one on Saturday, June 22. Have a few days off and then start again on Tuesday, June 25th. Will have labs drawn on Tuesday to see what my platelets will be. Will go from there.
Today, June 20th, we had our appointment with Dr. Sarriera. He came in without his usual smile and started talking about my visit with Dr. Roy. We discussed the 4 options Dr. Roy had suggested for me to do.
1. Surgery with possible radiation afterwards
2. Radiation only
3. Clinical trials
4. Continue with Panobinostat treatment plan
There are not any clinical trails that I can do because mostly all my labs are good. I wouldn't meet the markers they look for to put in a trial.
I asked Dr. Sarriera which way he would go. He said the Panobinostat would be the way to go again if I can control the side effects. We have not even completed two weeks with it to see any results. I asked him if that would shrink the lump on my head. Again, since we haven't completed a full treatment plan of the Panobinostat, there is no way of knowing. Radiation only was then discussed. He said we know it would probably shrink the tumor only to have another one pop up like the last time. Wasn't even done a full treatment and one popped up. They can only target the area where the tumor is. We had an appointment with Dr. Nanda, radiation oncology, and he examined the tumor and said they could do treatment on this area. And oh, he was amazed at my hair. Was bald the last time I saw him.
And then surgery. He recommend that I see a neurosurgeon to discuss possible surgery to remove the lump. I asked him if the lump was in between my skull and the skin on my head. He wasn't sure but wants me to have a MRI of the brain to be sure what we are dealing with before I see the neurosurgeon. This was the option Dr. Sarriera favored. I told him I just want it to go away. Almost 3 years and the lump reappears in the same place it was when I started??? The decision of the radiation only or surgery will be one Bill and I will decide once all appointments are over. No matter which one we choose, Dr. Sarriera has two chemo drugs he will try once surgery or radiation is complete if I can't tolerate the Panobinostat. Both of these will have me shave my head once again. Something I don't want to think about now.
Dr. Sarriera examined the tumor taking measurements. I forgot to ask him what they were so I could compare to the last time it was measured. I told him there were several sore spots and I can fell it "drawing" and pulling. And at times. it hurts. Told him I afraid it is growing downward in my head area and not on top where I can feel it.
We discussed some of my lab results from my Mayo appointment. The main one was IgE. IgE is a type of antibody for your immune system. This was a measurement that was important during my time at Moffitt. It was blown of the chart so far that they couldn't even measure it at the start. Before I left Moffitt it was down to 450. 214 is normal. Right now it's 45,000. This will now added to the Myeloma lab draws. In rare cases, a high level of IgE means Multiple Myeloma somewhere in the blood. Of course, I would be one with this problem. IgE has an essential role in allergic reactions causing sinusitis, asthma, food allergies;. symptoms that show up in the nose, lungs, throat or on the skin.
I left with tears as this is going to be a anxious time for me till these appointments are scheduled and I get the MRI and see the neurosurgeon. I hope and pray I can continue with the Panobinostat, along with my Kyprolis and Dex, as treatment until then. If it works and starts to shrink the tumor, that would be wonderful. No radiation or surgery.
The O4 FaceTimed me tonight making the O5. Cheri, Deb, Sandy and Louise. Was nice talking with them even if I did get emotional at the end. It can be hard at times. But I love that they do that. They were standing outside at Cheri's house. Cheri asked me if there were lightning bugs in Florida. Nope. Sandy tried to get some in our FaceTime camera. Sasha and Ellie loved to see them when they would come to PA during lightning bug time.
Quote:
When you are fighting cancer, it's not just for yourself; it's also for your family and friends.
Wow, the crepe myrtles are in full bloom. Whites, reds, pinks, purples. A lot of the medians of the roads we travel are loaded with them. Michelle and Gery have a white one that waves to us in the wind. Hope they are in bloom when Sandy and Denny come down. Ours that Sandy and Denny got us, bloomed last year but not seeing much yet this year. Beautiful, beautiful!
Had a few side effects from the chemo pill Panobinostat. First, I had edema. My feet, ankles and legs swelled up like mini balloons. Soaked them in Epsom salts and then applied Juniper oil with coconut oil. This lasted a few days. Then had GI problems. Not good. Then my platelets dropped and Dr. Sarriera took me off the Panobinostat. He then dropped the dosage for me to start again. Started the treatment again. Some thing happened and was taken off the Panobinostat again. Platelets dropping is not a good thing.
Back on the Panobinostat treatment plan once again. Had my Kyprolis drip on Tuesday along with my Dex and Kyprolis again on Wednesday. Took my first Panobinostat on Tuesday. Took my second on today, Thursday, June 20th. Then I will take one on Saturday, June 22. Have a few days off and then start again on Tuesday, June 25th. Will have labs drawn on Tuesday to see what my platelets will be. Will go from there.
Today, June 20th, we had our appointment with Dr. Sarriera. He came in without his usual smile and started talking about my visit with Dr. Roy. We discussed the 4 options Dr. Roy had suggested for me to do.
1. Surgery with possible radiation afterwards
2. Radiation only
3. Clinical trials
4. Continue with Panobinostat treatment plan
There are not any clinical trails that I can do because mostly all my labs are good. I wouldn't meet the markers they look for to put in a trial.
I asked Dr. Sarriera which way he would go. He said the Panobinostat would be the way to go again if I can control the side effects. We have not even completed two weeks with it to see any results. I asked him if that would shrink the lump on my head. Again, since we haven't completed a full treatment plan of the Panobinostat, there is no way of knowing. Radiation only was then discussed. He said we know it would probably shrink the tumor only to have another one pop up like the last time. Wasn't even done a full treatment and one popped up. They can only target the area where the tumor is. We had an appointment with Dr. Nanda, radiation oncology, and he examined the tumor and said they could do treatment on this area. And oh, he was amazed at my hair. Was bald the last time I saw him.
And then surgery. He recommend that I see a neurosurgeon to discuss possible surgery to remove the lump. I asked him if the lump was in between my skull and the skin on my head. He wasn't sure but wants me to have a MRI of the brain to be sure what we are dealing with before I see the neurosurgeon. This was the option Dr. Sarriera favored. I told him I just want it to go away. Almost 3 years and the lump reappears in the same place it was when I started??? The decision of the radiation only or surgery will be one Bill and I will decide once all appointments are over. No matter which one we choose, Dr. Sarriera has two chemo drugs he will try once surgery or radiation is complete if I can't tolerate the Panobinostat. Both of these will have me shave my head once again. Something I don't want to think about now.
Dr. Sarriera examined the tumor taking measurements. I forgot to ask him what they were so I could compare to the last time it was measured. I told him there were several sore spots and I can fell it "drawing" and pulling. And at times. it hurts. Told him I afraid it is growing downward in my head area and not on top where I can feel it.
We discussed some of my lab results from my Mayo appointment. The main one was IgE. IgE is a type of antibody for your immune system. This was a measurement that was important during my time at Moffitt. It was blown of the chart so far that they couldn't even measure it at the start. Before I left Moffitt it was down to 450. 214 is normal. Right now it's 45,000. This will now added to the Myeloma lab draws. In rare cases, a high level of IgE means Multiple Myeloma somewhere in the blood. Of course, I would be one with this problem. IgE has an essential role in allergic reactions causing sinusitis, asthma, food allergies;. symptoms that show up in the nose, lungs, throat or on the skin.
I left with tears as this is going to be a anxious time for me till these appointments are scheduled and I get the MRI and see the neurosurgeon. I hope and pray I can continue with the Panobinostat, along with my Kyprolis and Dex, as treatment until then. If it works and starts to shrink the tumor, that would be wonderful. No radiation or surgery.
The O4 FaceTimed me tonight making the O5. Cheri, Deb, Sandy and Louise. Was nice talking with them even if I did get emotional at the end. It can be hard at times. But I love that they do that. They were standing outside at Cheri's house. Cheri asked me if there were lightning bugs in Florida. Nope. Sandy tried to get some in our FaceTime camera. Sasha and Ellie loved to see them when they would come to PA during lightning bug time.
Quote:
When you are fighting cancer, it's not just for yourself; it's also for your family and friends.
Monday, June 3, 2019
Curl.
Today, Monday, June 3rd was our appointment at Mayo Clinic in Jacksonville, FL with Dr. Vivek Roy for a consultation about my relapse, once again, of Myeloma. We decided to go to Jacksonville the night before since my appointment was at 8:15 AM. And you all know I am not a morning person.
The hotel we chose to stay at was right on the campus. Courtyard by Marriot. Once we checked in, we started to look for a place to eat. I was craving crab legs. Finally found a place called The Juicy Crab about 5 miles away. OMG. I was in heaven. A pound of crab legs, potatoes and corn on the cob done in a boil. Bill got a pound of shrimp, potatoes and corn on the cob also done in a boil. (Made me think of Bob Curwood and his boils he made. So yummy). They had several seasonings to pick from along with the choice of spice level. The meals come out on metal plates in a bubble wrap of plastic. Eat it out of the bag or pour it on the plate. Bag for a bit and then poured on the plate. Such great food. Now the place, well let me just say it could have been a bit cleaner. That's all I will say.
We were up at 5 this morning to get ready for our appointment and have time for breakfast as well. My breakfast was great. Can't go wrong with a bacon sandwich on an English muffin. Bill's not so good. Tried egg whites. Wasn't a fan of them. Ate, packed and off to the Mayo building just up the road. We registered on the first floor and was then sent to the 3rd floor to wait for our appointment with the doctor, Dr. Roy.
Dr. Roy came in the room and after introducing himself, started reading the info sent by Dr. Sarriera's office asking me questions along the way. Once he was finished reviewing the info and asking a few questions, he told us that the Myeloma I had was very unusual. Usually it's not so localized and would be in several spots throughout my body. Mine is only the lump on my head that has filled in what I called my crater from the original lump 3 years ago. I did asked him if the lump was Myeloma to which he answered yes. He discussed a few other drugs that are possibilities for me. Then Dr. Roy told us he recommended the following options:
1. Surgery followed by radiation - would have to see a neurosurgeon whether at Mayo or UF Health Cancer Center
2. Radiation only - not so sure would be effective as this a large tumor - told him we have already seen a radiologist
3. Clinical trials - at this time, I do not qualify for any - my labs are basically all good - will keep my info and if a trial becomes available, will make sure we get a call
4. Continue with the Panobinostate, Kyprolis and Dex for at least another 3 months - Panobinostat at yet another reduced dosage
He concluded that his recommendation would be option 4 at this time. Said I need to give it a chance to work. I am very willing to do that if we can get the Panobinostat to not cause certain side effects. One being low platelets. He then ordered some labs to be drawn before we left the Clinic. Dr. Roy said to think about all the options whether they be at Mayo or UF Health Cancer Center, he was there to be of help. Done with our appointment and on to get labs drawn. Then ready to head home but we actually saw someone we knew. Mike and Lori. Members of our support group. Haven't seen them for a while. Mike is the Myeloma patient. He did a trial with Darzalex and now is in remission. Was to have a bone marrow transplant. Even harvested his cells. No transplant for now. Said he feels pretty good. We were very happy to hear this. Talked for at least an hour.
Now need to let Dr. Sarriera know what Dr. Roy said. Already sent an emailed Ana, his oncology nurse, all the info. Dr. Roy added his clinical notes to my Mayo portal which I will get a copy to Ana.
My platelets came back at 53 and my bilirubin was 1.7 from the lab draw Dr. Roy had done today. Will see if I get chemo tomorrow.
We decided to take the long scenic way home via A1A. Beautiful, beautiful ocean, dunes, homes. Made me want to rent a place along the ocean for a few days.
There are several commercials we hate hearing. Liberty, liberty, liberty is one that I dislike. But the one that Bill dislikes the most is one where a man is talking about dentures and he says he was able to eat corn on the cob and it made his toes curl. Really stupid.
Quote:
It is easy to forgot how precious it is to be alive.
Today, Monday, June 3rd was our appointment at Mayo Clinic in Jacksonville, FL with Dr. Vivek Roy for a consultation about my relapse, once again, of Myeloma. We decided to go to Jacksonville the night before since my appointment was at 8:15 AM. And you all know I am not a morning person.
The hotel we chose to stay at was right on the campus. Courtyard by Marriot. Once we checked in, we started to look for a place to eat. I was craving crab legs. Finally found a place called The Juicy Crab about 5 miles away. OMG. I was in heaven. A pound of crab legs, potatoes and corn on the cob done in a boil. Bill got a pound of shrimp, potatoes and corn on the cob also done in a boil. (Made me think of Bob Curwood and his boils he made. So yummy). They had several seasonings to pick from along with the choice of spice level. The meals come out on metal plates in a bubble wrap of plastic. Eat it out of the bag or pour it on the plate. Bag for a bit and then poured on the plate. Such great food. Now the place, well let me just say it could have been a bit cleaner. That's all I will say.
We were up at 5 this morning to get ready for our appointment and have time for breakfast as well. My breakfast was great. Can't go wrong with a bacon sandwich on an English muffin. Bill's not so good. Tried egg whites. Wasn't a fan of them. Ate, packed and off to the Mayo building just up the road. We registered on the first floor and was then sent to the 3rd floor to wait for our appointment with the doctor, Dr. Roy.
Dr. Roy came in the room and after introducing himself, started reading the info sent by Dr. Sarriera's office asking me questions along the way. Once he was finished reviewing the info and asking a few questions, he told us that the Myeloma I had was very unusual. Usually it's not so localized and would be in several spots throughout my body. Mine is only the lump on my head that has filled in what I called my crater from the original lump 3 years ago. I did asked him if the lump was Myeloma to which he answered yes. He discussed a few other drugs that are possibilities for me. Then Dr. Roy told us he recommended the following options:
1. Surgery followed by radiation - would have to see a neurosurgeon whether at Mayo or UF Health Cancer Center
2. Radiation only - not so sure would be effective as this a large tumor - told him we have already seen a radiologist
3. Clinical trials - at this time, I do not qualify for any - my labs are basically all good - will keep my info and if a trial becomes available, will make sure we get a call
4. Continue with the Panobinostate, Kyprolis and Dex for at least another 3 months - Panobinostat at yet another reduced dosage
He concluded that his recommendation would be option 4 at this time. Said I need to give it a chance to work. I am very willing to do that if we can get the Panobinostat to not cause certain side effects. One being low platelets. He then ordered some labs to be drawn before we left the Clinic. Dr. Roy said to think about all the options whether they be at Mayo or UF Health Cancer Center, he was there to be of help. Done with our appointment and on to get labs drawn. Then ready to head home but we actually saw someone we knew. Mike and Lori. Members of our support group. Haven't seen them for a while. Mike is the Myeloma patient. He did a trial with Darzalex and now is in remission. Was to have a bone marrow transplant. Even harvested his cells. No transplant for now. Said he feels pretty good. We were very happy to hear this. Talked for at least an hour.
Now need to let Dr. Sarriera know what Dr. Roy said. Already sent an emailed Ana, his oncology nurse, all the info. Dr. Roy added his clinical notes to my Mayo portal which I will get a copy to Ana.
My platelets came back at 53 and my bilirubin was 1.7 from the lab draw Dr. Roy had done today. Will see if I get chemo tomorrow.
We decided to take the long scenic way home via A1A. Beautiful, beautiful ocean, dunes, homes. Made me want to rent a place along the ocean for a few days.
There are several commercials we hate hearing. Liberty, liberty, liberty is one that I dislike. But the one that Bill dislikes the most is one where a man is talking about dentures and he says he was able to eat corn on the cob and it made his toes curl. Really stupid.
Quote:
It is easy to forgot how precious it is to be alive.
Tuesday, May 28, 2019
Insects.
My platelets came back as 94. Yeah. On to the new treatment plan to start on Tuesday, May 21st. This plan as I mentioned before, will be reduction of all chemo. Panobinostat reduced to 15 mg, Kyprolis reduced dosage (not sure what that is), Dex once a week only. Started on the 21st. Panobinostat, Kyprolis and Dex. May 22nd, Kyprolis. May 23th, Panobinostat. May 25th, Panobinostat. Several side effects hit. Headache, sinuses, nausea. Very fatigued.
Appointment with Dr Sarriera May 24th. Abby came in first to talk with us. She listened as I described the side effects I was having. Told her I can manage them if that is all I have. She ordered a nausea med for me to have on hand and take as needed. Dr. Sarriera came in and we went over the same thing we discussed with Abby. Mainly as long as my platelets stay up, we are good to go on this treatment plan. I told him right now I have two options, this treatment plan and radiation. Waiting on option 3 when we go to Mayo.
Anna, Dr. Sarriera's oncology nurse, made up a great calendar for me to get on track with especially the Panobinostat. That is taken 2 weeks every other day each week. Then off for two weeks. Kyprolis - twice a week for three weeks. Then off one week. Corresponds with one of the off weeks from the Panobinostat. Dex every Tuesday.
Desiree, my all time favorite nurse, came to visit and brought a patient that has Multiple Myeloma. She wanted to meet me, Barb, so when she come to our Myeloma support group meeting, she will know someone. Hope to see her June 10th. Desiree, alway looking out for me. Love that girl.
AND OF COURSE went for my chemo today May 28th, platelets dropped to 22. No chemo once again. Nothing until we see what my platelets show on June 4th. Right now, Bill and I are not in our happy places once again. This up and down and up and down with this ugly disease has not been fun. We will remain positive but need time to accept what this ugly disease has brought to us now. Ugly, ugly Myeloma. Ugly, ugly disease. Oh, I had already taken my Dex and the Panobinostat. I should have waited until the labs came back. I usually do. Just slipped my mind. Also, have a bit of edema.
Feet and ankles are swelling. Was given signs to watch for. Bill has been making me a water bath with Epsom salts with lavender. Then rubs them with Juniper. Helps a lot.
Had a great day on Sunday, May 26th. Matt, Sasha and Ellie and Michelle and Gery came to our house and we had a wonderful picnic. Bill grilled chicken and sausages. The rest brought appetizers, Mac salad and beverages. I was able to hang with them all day. Play a bean bag game with the girls and even got in the pool with Ellie. Did I say how wonderful this day was for me? Great conversations with Michelle, Gery, Matt and Bill. Great listening to the laughter that stays in your heart of my granddaughters. Just a great, wonderful day if I didn't say it before. ;)
Sasha and I were playing a game where you throw a bean bag into a hole in a slanted board. The song "School's Out for the Summer" came on the radio. I was singing along with it to the parts I knew. I missed a part and asked Sasha what they said. No more insects was her answer. I couldn't quit laughing. She laughed with me a bit and said "Well Didi, we do have cock roaches in our school". Love me some Sasha.
Quote:
Prayer is the most important conversation of the day. Pray with me for a cure for Multiple Myeloma.
My platelets came back as 94. Yeah. On to the new treatment plan to start on Tuesday, May 21st. This plan as I mentioned before, will be reduction of all chemo. Panobinostat reduced to 15 mg, Kyprolis reduced dosage (not sure what that is), Dex once a week only. Started on the 21st. Panobinostat, Kyprolis and Dex. May 22nd, Kyprolis. May 23th, Panobinostat. May 25th, Panobinostat. Several side effects hit. Headache, sinuses, nausea. Very fatigued.
Appointment with Dr Sarriera May 24th. Abby came in first to talk with us. She listened as I described the side effects I was having. Told her I can manage them if that is all I have. She ordered a nausea med for me to have on hand and take as needed. Dr. Sarriera came in and we went over the same thing we discussed with Abby. Mainly as long as my platelets stay up, we are good to go on this treatment plan. I told him right now I have two options, this treatment plan and radiation. Waiting on option 3 when we go to Mayo.
Anna, Dr. Sarriera's oncology nurse, made up a great calendar for me to get on track with especially the Panobinostat. That is taken 2 weeks every other day each week. Then off for two weeks. Kyprolis - twice a week for three weeks. Then off one week. Corresponds with one of the off weeks from the Panobinostat. Dex every Tuesday.
Desiree, my all time favorite nurse, came to visit and brought a patient that has Multiple Myeloma. She wanted to meet me, Barb, so when she come to our Myeloma support group meeting, she will know someone. Hope to see her June 10th. Desiree, alway looking out for me. Love that girl.
AND OF COURSE went for my chemo today May 28th, platelets dropped to 22. No chemo once again. Nothing until we see what my platelets show on June 4th. Right now, Bill and I are not in our happy places once again. This up and down and up and down with this ugly disease has not been fun. We will remain positive but need time to accept what this ugly disease has brought to us now. Ugly, ugly Myeloma. Ugly, ugly disease. Oh, I had already taken my Dex and the Panobinostat. I should have waited until the labs came back. I usually do. Just slipped my mind. Also, have a bit of edema.
Feet and ankles are swelling. Was given signs to watch for. Bill has been making me a water bath with Epsom salts with lavender. Then rubs them with Juniper. Helps a lot.
Had a great day on Sunday, May 26th. Matt, Sasha and Ellie and Michelle and Gery came to our house and we had a wonderful picnic. Bill grilled chicken and sausages. The rest brought appetizers, Mac salad and beverages. I was able to hang with them all day. Play a bean bag game with the girls and even got in the pool with Ellie. Did I say how wonderful this day was for me? Great conversations with Michelle, Gery, Matt and Bill. Great listening to the laughter that stays in your heart of my granddaughters. Just a great, wonderful day if I didn't say it before. ;)
Sasha and I were playing a game where you throw a bean bag into a hole in a slanted board. The song "School's Out for the Summer" came on the radio. I was singing along with it to the parts I knew. I missed a part and asked Sasha what they said. No more insects was her answer. I couldn't quit laughing. She laughed with me a bit and said "Well Didi, we do have cock roaches in our school". Love me some Sasha.
Quote:
Prayer is the most important conversation of the day. Pray with me for a cure for Multiple Myeloma.
Sunday, May 19, 2019
Shoes.
Did my blood drawn on Friday. Platelets came back at 37 verses 15 last Tuesday. Will go in for a blood draw again tomorrow, Monday, May 20th. Once we get those results and the results from Tuesday's labs, Dr. Sarriera will make the decision as to continue chemo or not. New plan.
All chemo will be changed. Farydak, will be 15 mg instead of 20. I will take these every other day on Tuesday, Thursday and Saturday. The Kyprolis will be reduced to half the dosage on Tuesday and Wednesday.. Dex will just be on Tuesdays. I think I got this. Pray that this will work for me.
Even though I haven't had chemo for a few days, my fatigue level is not so good. I just hate how tired I get especially when I want to do something like sew. And there is no beating it. Just part of my Myeloma life.
We met with Dr. Nanda, radiologist. Same one that administered my radiation in 2017. We remembered how at my last treatment of radiation, another lump appeared just out of range of where the radiation was aimed. Dr. Nanda is a wonderful, personable, caring doctor. He spent at least 45 minutes with us. After he examined the lump on my head seeing it wasn't in the same place as the last one he treated, he said that I would be a candidate for radiation again. We discussed this in length. Especially about shaving my head again.
So we have option 1 of the new treatment plan and option 2 of having radiation again. Our option 3 will be our trip to Mayo Clinic for a second opinion (requested by Dr. Sarriera). I have an appointment schedule for June 3rd. We are anxious to go. Anxious to see if there is an option 3.
Bill and I like to watch the old Match game. I know, we are old. LOL. Love to see the hair dos and clothes. We were watching Match Game 76 and they were scrolling through the sponsors and one of them was Kinney Shoes. A name from the past. Bill worked for them for years and years. In fact, that is why we moved to Chambersburg. New mall, new shoe store. Remember Michelle Norris, Louise Curwood???
Quote:
Cancer changes people. It makes us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes and prays more desperately and loves more openly.
Did my blood drawn on Friday. Platelets came back at 37 verses 15 last Tuesday. Will go in for a blood draw again tomorrow, Monday, May 20th. Once we get those results and the results from Tuesday's labs, Dr. Sarriera will make the decision as to continue chemo or not. New plan.
All chemo will be changed. Farydak, will be 15 mg instead of 20. I will take these every other day on Tuesday, Thursday and Saturday. The Kyprolis will be reduced to half the dosage on Tuesday and Wednesday.. Dex will just be on Tuesdays. I think I got this. Pray that this will work for me.
Even though I haven't had chemo for a few days, my fatigue level is not so good. I just hate how tired I get especially when I want to do something like sew. And there is no beating it. Just part of my Myeloma life.
We met with Dr. Nanda, radiologist. Same one that administered my radiation in 2017. We remembered how at my last treatment of radiation, another lump appeared just out of range of where the radiation was aimed. Dr. Nanda is a wonderful, personable, caring doctor. He spent at least 45 minutes with us. After he examined the lump on my head seeing it wasn't in the same place as the last one he treated, he said that I would be a candidate for radiation again. We discussed this in length. Especially about shaving my head again.
So we have option 1 of the new treatment plan and option 2 of having radiation again. Our option 3 will be our trip to Mayo Clinic for a second opinion (requested by Dr. Sarriera). I have an appointment schedule for June 3rd. We are anxious to go. Anxious to see if there is an option 3.
Bill and I like to watch the old Match game. I know, we are old. LOL. Love to see the hair dos and clothes. We were watching Match Game 76 and they were scrolling through the sponsors and one of them was Kinney Shoes. A name from the past. Bill worked for them for years and years. In fact, that is why we moved to Chambersburg. New mall, new shoe store. Remember Michelle Norris, Louise Curwood???
Quote:
Cancer changes people. It makes us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes and prays more desperately and loves more openly.
Tuesday, May 14, 2019
Beating
Just a quick update. Oh, sorry for the mistakes in yesterday’s blog. Was sleeping. ha ha!,
May 14th I had a chemo appointment today. This was a lab day. Got there around 12:20. Appointment was for 12:30. Phew. Didn’t take me back for the draw station until 12:45. Then when I told my nurse they were to be Myeloma labs drawn, she didn’t see them in the system. Took a bit to get this straightened out. Around 12:15 went to my room. Had to wait for labs to be processed . Bilirubin 2.2. Platelets 15. Not good. Had to talk to Dr. Sarriera. All chemo on hold even today’s. Also, no Dex. Will have new CMP blood draw Friday. Dr. Sarriera will probably lower the dose of the Farydak.
That’s all I know right now.
Coming home yesterday, we were stopped at a red light and saw this girl running and yelling at a car. She finally crossed the street with her fist up and started beating on this cars window. Light changed. Car takes off and so do we!!!!!
Quote:
The only way to beat this cancer is to accept the reality, embrace the pains and find the courage to move ahead.
Just a quick update. Oh, sorry for the mistakes in yesterday’s blog. Was sleeping. ha ha!,
May 14th I had a chemo appointment today. This was a lab day. Got there around 12:20. Appointment was for 12:30. Phew. Didn’t take me back for the draw station until 12:45. Then when I told my nurse they were to be Myeloma labs drawn, she didn’t see them in the system. Took a bit to get this straightened out. Around 12:15 went to my room. Had to wait for labs to be processed . Bilirubin 2.2. Platelets 15. Not good. Had to talk to Dr. Sarriera. All chemo on hold even today’s. Also, no Dex. Will have new CMP blood draw Friday. Dr. Sarriera will probably lower the dose of the Farydak.
That’s all I know right now.
Coming home yesterday, we were stopped at a red light and saw this girl running and yelling at a car. She finally crossed the street with her fist up and started beating on this cars window. Light changed. Car takes off and so do we!!!!!
Quote:
The only way to beat this cancer is to accept the reality, embrace the pains and find the courage to move ahead.
Monday, May 13, 2019
Green Line.
Well, Tuesday, May 7th was my first day of the new treatment plan. I took my Dex around 10. My appointment for the Kyprolis and the Farydak was at 12:30. Went to the Caner Center and right to Scripts Pharmacy for my Farydak and a few other meds I needed. Then headed up to 5LP for the labs and the Kyprolis and see if it was okay to take the Farydak. Labs drawn and back to my room to wait results. Bilirubin high so they had to contact Dr. Sarriera. Not to take the Farydak either until he approves all. Finally had the approval to go forward with infusion and chem med. 2:30 was given the Farydak and started the Kyprolis infusion. The Kyprolis drip has been doubled. This now will infusion for 30 minutes. So the Farydak is an oral chemo and that goes home with me. Only take that Tuesday, Thursday and Saturday every other week. Headache and had trouble sleeping. Took two Tylenol before I went to bed. Still had headache when I got up on Wednesday, May 8th. Worked through that with some oils. Had a bout of diarrhea but that subside before we had to leave for my appointment. Kyprolis drip and dex. Pat stopped by to say hi. Hadn't seen her for a while at the hospital. Nice little visit. Got settled in a room, no labs needed. Meds mixed and ready to infuse. My oncology nurse contacted Dr. Sarriera to see what he wants me to take for the diarrhea. He said Imoium.
Thursday, May 9th no appointments. Yeah. Took my Farydak at 2:30. To take this at the same time each day. Nothing really going on. Fatiqued.
Well, then came. Friday May10th. Worse day of my life minus Kristi and Millie stopping by with a Chai Latte. And if I said this before, change that to Friday, May 10th. Around 2:30, diarrhea hit and boy did it hit. Not real sure what time it stopped but I was in misery. And of course, this cause other problems. Bill went to the drug store early Saturday, May 12 and got me some things to help my new problem. And they sure did help. Was to do dimes and dinner with Michelle and Gery butI was to miserable. I took my 3rd Faydak at 2:30 on Saturday, May 11th. Was so upset that I was going to hit with side effects for Sunday, May 12th and miss Mother's Day at Kristi. Worked out okay for me. Imodium worked (maybe too much) just so fatigued.
Today May 13th is Bill's 70 birthday. Wow so hard to believe. Had a few pains in my stomach and fatigued. Was able to fight it off and take Bill to lunch along with Kristi. Was nice. I think he enjoyed it. But couldn't fight off the fatique. Slept from about 1:30 till 3:30. Up a bit and slept off and on all day. So ready for bed now. Going real soon. Don't like feeling this way.
When the lab mixes my chemo meds and hands over th the oncology nurse, she scans it along with my wrist bracelet. Then she hangs it and maneuvers the tubes through the defuser machine and pushes some numbers in a thing that looks like a big remote control. Then she gets another oncology nurse to green line it. Which means that other nurse comes in my room, looks at the bag of hanging med asking me my name and birth date. She takes a marker and crosses through the info and starts the machine. We laugh because most the nurses know me but I still have to tell them my name and birth date.
Quote:
Be thankful for today, because in one moment your whole life could change.
Well, Tuesday, May 7th was my first day of the new treatment plan. I took my Dex around 10. My appointment for the Kyprolis and the Farydak was at 12:30. Went to the Caner Center and right to Scripts Pharmacy for my Farydak and a few other meds I needed. Then headed up to 5LP for the labs and the Kyprolis and see if it was okay to take the Farydak. Labs drawn and back to my room to wait results. Bilirubin high so they had to contact Dr. Sarriera. Not to take the Farydak either until he approves all. Finally had the approval to go forward with infusion and chem med. 2:30 was given the Farydak and started the Kyprolis infusion. The Kyprolis drip has been doubled. This now will infusion for 30 minutes. So the Farydak is an oral chemo and that goes home with me. Only take that Tuesday, Thursday and Saturday every other week. Headache and had trouble sleeping. Took two Tylenol before I went to bed. Still had headache when I got up on Wednesday, May 8th. Worked through that with some oils. Had a bout of diarrhea but that subside before we had to leave for my appointment. Kyprolis drip and dex. Pat stopped by to say hi. Hadn't seen her for a while at the hospital. Nice little visit. Got settled in a room, no labs needed. Meds mixed and ready to infuse. My oncology nurse contacted Dr. Sarriera to see what he wants me to take for the diarrhea. He said Imoium.
Thursday, May 9th no appointments. Yeah. Took my Farydak at 2:30. To take this at the same time each day. Nothing really going on. Fatiqued.
Well, then came. Friday May10th. Worse day of my life minus Kristi and Millie stopping by with a Chai Latte. And if I said this before, change that to Friday, May 10th. Around 2:30, diarrhea hit and boy did it hit. Not real sure what time it stopped but I was in misery. And of course, this cause other problems. Bill went to the drug store early Saturday, May 12 and got me some things to help my new problem. And they sure did help. Was to do dimes and dinner with Michelle and Gery butI was to miserable. I took my 3rd Faydak at 2:30 on Saturday, May 11th. Was so upset that I was going to hit with side effects for Sunday, May 12th and miss Mother's Day at Kristi. Worked out okay for me. Imodium worked (maybe too much) just so fatigued.
Today May 13th is Bill's 70 birthday. Wow so hard to believe. Had a few pains in my stomach and fatigued. Was able to fight it off and take Bill to lunch along with Kristi. Was nice. I think he enjoyed it. But couldn't fight off the fatique. Slept from about 1:30 till 3:30. Up a bit and slept off and on all day. So ready for bed now. Going real soon. Don't like feeling this way.
When the lab mixes my chemo meds and hands over th the oncology nurse, she scans it along with my wrist bracelet. Then she hangs it and maneuvers the tubes through the defuser machine and pushes some numbers in a thing that looks like a big remote control. Then she gets another oncology nurse to green line it. Which means that other nurse comes in my room, looks at the bag of hanging med asking me my name and birth date. She takes a marker and crosses through the info and starts the machine. We laugh because most the nurses know me but I still have to tell them my name and birth date.
Quote:
Be thankful for today, because in one moment your whole life could change.
Sunday, May 5, 2019
Gray.
I will be starting my new treatment plan this week. My new chemo pill was approved by my insurance company. So we are ready to go.
It was nice have off those, soon to be 13 days. However there were days I didn't feel so well. I attribute that to coming off the meds. Bill and I have been using essential oils for several months now. Thank you Mimi (our niece). Mimi has sent us several combination oils to try. She has been there to answer our questions and give us oil recipes for different problems we are having. Some of these oils help me make it through my not feeling so well days. Bill has found several oils etc to help him as well.
So Tuesday, May 7th, I will start my treatment of Kyprolis. Also, I take my first Panobinostat along with Dex. Wednesday, May 8th, I get my second infusion of Kyprolis and Dex. Then on Thursday, May 9th, another Panobinostat. Then Saturday, another Panobinostat. That will finish up my first week. May 14th and 15th will be my Kyprolis and Dex. No Panobinostat this week. May 21st, will be the Kyprolis infusion, Panobinostat and Dex. May 22nd, Kyprolis and Dex. May 23rd - Panobinostat. May 25th - Panobinostat. Then I am off for a week. All this to start over again starting June 4th.
We did get an appointment set for Mayo Clinic in Jacksonville as requested by Dr. Sarriera. It will be June 3rd at 8:15 AM. I will be seeing Dr. Roy. I needed to send all my medical records, CD's of scans, X-ray's, MRI's etc. Along with all that, I needed to send any pathology reports there may have been. I sent an email to Desiree asking her where I should start to get all this info. And, the wonderful person she has been to me, took it upon herself to have all this collected and sent to Mayo. Thank you Desiree. I can only sing high praises of her.
Gery and Michelle came over Saturday night for dinner and dimes (Tripoly). We decided to bet on the Kentucky Derby too. I choose Gray Magician. We watched the race, saw the disqualification and I tried to see what place my horse came in. Well, it wasn't until much later that night, I looked on line and found my answer. 18 horses running. Mine came in last. 18th!!! Well, at least he finished right?
Quote:
Once cancer happens, it changes the way you live the rest of your life.
I will be starting my new treatment plan this week. My new chemo pill was approved by my insurance company. So we are ready to go.
It was nice have off those, soon to be 13 days. However there were days I didn't feel so well. I attribute that to coming off the meds. Bill and I have been using essential oils for several months now. Thank you Mimi (our niece). Mimi has sent us several combination oils to try. She has been there to answer our questions and give us oil recipes for different problems we are having. Some of these oils help me make it through my not feeling so well days. Bill has found several oils etc to help him as well.
So Tuesday, May 7th, I will start my treatment of Kyprolis. Also, I take my first Panobinostat along with Dex. Wednesday, May 8th, I get my second infusion of Kyprolis and Dex. Then on Thursday, May 9th, another Panobinostat. Then Saturday, another Panobinostat. That will finish up my first week. May 14th and 15th will be my Kyprolis and Dex. No Panobinostat this week. May 21st, will be the Kyprolis infusion, Panobinostat and Dex. May 22nd, Kyprolis and Dex. May 23rd - Panobinostat. May 25th - Panobinostat. Then I am off for a week. All this to start over again starting June 4th.
We did get an appointment set for Mayo Clinic in Jacksonville as requested by Dr. Sarriera. It will be June 3rd at 8:15 AM. I will be seeing Dr. Roy. I needed to send all my medical records, CD's of scans, X-ray's, MRI's etc. Along with all that, I needed to send any pathology reports there may have been. I sent an email to Desiree asking her where I should start to get all this info. And, the wonderful person she has been to me, took it upon herself to have all this collected and sent to Mayo. Thank you Desiree. I can only sing high praises of her.
Gery and Michelle came over Saturday night for dinner and dimes (Tripoly). We decided to bet on the Kentucky Derby too. I choose Gray Magician. We watched the race, saw the disqualification and I tried to see what place my horse came in. Well, it wasn't until much later that night, I looked on line and found my answer. 18 horses running. Mine came in last. 18th!!! Well, at least he finished right?
Quote:
Once cancer happens, it changes the way you live the rest of your life.
Sunday, April 28, 2019
Crackers.
All tests but one are complete and results have been sent to Dr. Sarriera. We, once again, knew what we were going to hear. We, once again, tried to prepare ourselves knowing what we were going to hear. We, once again!!!
Three years ago about this time I discovered a small lump on my head and proceeded to get it checked, X rayed, etc. Three years ago and we are still fighting the fight. Three must be the magical number because it seems Bill and I get 3 months of easy going and then BAM!! This time the Myeloma is back as well as the lump. And the lump is in the same area where the first one started. It's measures about 1.5 inches by 1.6 inches and covers the "crater" as I called it.
My bone marrow biopsy didn't show any detectable Myeloma present. My MRIs of the spine didn't show any active Myeloma lesions present (still have the lumbar MRI to do yet). My lambda light chains have spiked to 15.5. The pet scan showed "soft tissue mass on the underlying brain." No other masses or lesions were detected on the pet scan. Tears wouldn't stop.
All this we were told by Dr. Sarriera but had read some of it in my health portal. So, once again, we are going to change up the treatment plan. No longer just going to the Cancer Center once a week. Dr. Sarriera first said about us going to Moffitt to see if I qualified for a clinical trail. I told him that I was on their list for clinical trials and apparently there isn't one for me at this time. He then said he would like me to see a radiologist again. Just to have them look at the lump. I told Dr. Sarriera that I really didn't want to do radiology again if I didn't have to. I am being a bit vain but I don't want to shave my head again. 2 times is enough. But if there isn't any alternative, I would do what I have to do. He also mentioned he is going to refer me to the Mayo Clinic in Jacksonville.
Last he discussed the treatment plan he has for me now. My Myeloma is very aggressive as I have mentioned before. He wants me to get started on the plan and not wait for referrals etc to happen. As far as going back to what I was doing, that is not going to be. He feels the meds I was on have worked their course. So I will now be taking a chemo pill with the name of Panobinostat (Farydak - I will be calling it fairy dust). Will take this on Tuesdays, Thursdays and Saturdays every other week. I will still have the chemo infusion of Kyprolis at the Cancer Center but will be twice a week instead of once a week. The dosage will be increased also. He also increased my Dex from once a week to twice a week (sorry Bill). The Kyprolis and Dex will be three weeks on and one week off in conjunction with the Panobinostat. All this is to start May 7th. More tears. Just so tired of it all. But what are my alternatives? We will fight this ugly disease once again and for as long as it takes. Dr. Sarriera was sympathic and let me cry. We then discussed the hernia operation. He said that he does not recommend me doing this for several reasons. My blood counts are low, I would have to be off treatment for 3 to 4 weeks and then there would be a recovery time of 2 to 3 weeks (I think I have that right). His recommendation is no surgery.!! With the way the Myeloma is progressing, he doesn't feel I can be without treatment for that long of a period. So no go on fixing the hernia at this time. I will deal with the pain. If it gets to bad, I can always get some pain pills. We talked a bit more and he and his fellowship trainee left. More tears.
But guess who just happened to be walking down the hallway? Desiree. Whether she knew I was there or not, I don't care. She came in my room and and gave me the warmest, caring hug. A hug that was so needed. Desiree. Almost three years ago, she was my first oncology nurse with a heart of gold for her patients. Even though she has moved on to another position with the hospital, she seems to pop up every once in a while when I seem to need her. Thanks Desiree. Love those baby stories that brings me joy.
I would like to also ask for prayers for my friend Benn. He had hoped to be able to do a clinical trial but couldn't reach the markers needed. He is now going to start Darazalex along with Dex and I think, Pomalist. Similar, once again, to what I was doing. Praying this treatment works for him.
I had to fast for my bone marrow biopsy. And without thinking when I made my appointment, the day I had to fast was Easter Sunday. What, no mashed potatoes, no bread but most of all no Reeses peanut butter eggs??? The day of my biopsy, we were waiting in a room for the nurse to come and get me to prep me for surgery. In this room are several other patients waiting for nurses to get them for whatever surgery they were having. I am sure they too had to fast. So, I had to laugh, when Bill pulled out a pack of peanut butter crackers to eat. I was waiting on someone to tackle him for them. I was about ready to and I don't like peanut butter crackers.
Quote:
Dang cancer. Get up every morning and remind yourself, "I CAN DO THIS'!
All tests but one are complete and results have been sent to Dr. Sarriera. We, once again, knew what we were going to hear. We, once again, tried to prepare ourselves knowing what we were going to hear. We, once again!!!
Three years ago about this time I discovered a small lump on my head and proceeded to get it checked, X rayed, etc. Three years ago and we are still fighting the fight. Three must be the magical number because it seems Bill and I get 3 months of easy going and then BAM!! This time the Myeloma is back as well as the lump. And the lump is in the same area where the first one started. It's measures about 1.5 inches by 1.6 inches and covers the "crater" as I called it.
My bone marrow biopsy didn't show any detectable Myeloma present. My MRIs of the spine didn't show any active Myeloma lesions present (still have the lumbar MRI to do yet). My lambda light chains have spiked to 15.5. The pet scan showed "soft tissue mass on the underlying brain." No other masses or lesions were detected on the pet scan. Tears wouldn't stop.
All this we were told by Dr. Sarriera but had read some of it in my health portal. So, once again, we are going to change up the treatment plan. No longer just going to the Cancer Center once a week. Dr. Sarriera first said about us going to Moffitt to see if I qualified for a clinical trail. I told him that I was on their list for clinical trials and apparently there isn't one for me at this time. He then said he would like me to see a radiologist again. Just to have them look at the lump. I told Dr. Sarriera that I really didn't want to do radiology again if I didn't have to. I am being a bit vain but I don't want to shave my head again. 2 times is enough. But if there isn't any alternative, I would do what I have to do. He also mentioned he is going to refer me to the Mayo Clinic in Jacksonville.
Last he discussed the treatment plan he has for me now. My Myeloma is very aggressive as I have mentioned before. He wants me to get started on the plan and not wait for referrals etc to happen. As far as going back to what I was doing, that is not going to be. He feels the meds I was on have worked their course. So I will now be taking a chemo pill with the name of Panobinostat (Farydak - I will be calling it fairy dust). Will take this on Tuesdays, Thursdays and Saturdays every other week. I will still have the chemo infusion of Kyprolis at the Cancer Center but will be twice a week instead of once a week. The dosage will be increased also. He also increased my Dex from once a week to twice a week (sorry Bill). The Kyprolis and Dex will be three weeks on and one week off in conjunction with the Panobinostat. All this is to start May 7th. More tears. Just so tired of it all. But what are my alternatives? We will fight this ugly disease once again and for as long as it takes. Dr. Sarriera was sympathic and let me cry. We then discussed the hernia operation. He said that he does not recommend me doing this for several reasons. My blood counts are low, I would have to be off treatment for 3 to 4 weeks and then there would be a recovery time of 2 to 3 weeks (I think I have that right). His recommendation is no surgery.!! With the way the Myeloma is progressing, he doesn't feel I can be without treatment for that long of a period. So no go on fixing the hernia at this time. I will deal with the pain. If it gets to bad, I can always get some pain pills. We talked a bit more and he and his fellowship trainee left. More tears.
But guess who just happened to be walking down the hallway? Desiree. Whether she knew I was there or not, I don't care. She came in my room and and gave me the warmest, caring hug. A hug that was so needed. Desiree. Almost three years ago, she was my first oncology nurse with a heart of gold for her patients. Even though she has moved on to another position with the hospital, she seems to pop up every once in a while when I seem to need her. Thanks Desiree. Love those baby stories that brings me joy.
I would like to also ask for prayers for my friend Benn. He had hoped to be able to do a clinical trial but couldn't reach the markers needed. He is now going to start Darazalex along with Dex and I think, Pomalist. Similar, once again, to what I was doing. Praying this treatment works for him.
I had to fast for my bone marrow biopsy. And without thinking when I made my appointment, the day I had to fast was Easter Sunday. What, no mashed potatoes, no bread but most of all no Reeses peanut butter eggs??? The day of my biopsy, we were waiting in a room for the nurse to come and get me to prep me for surgery. In this room are several other patients waiting for nurses to get them for whatever surgery they were having. I am sure they too had to fast. So, I had to laugh, when Bill pulled out a pack of peanut butter crackers to eat. I was waiting on someone to tackle him for them. I was about ready to and I don't like peanut butter crackers.
Quote:
Dang cancer. Get up every morning and remind yourself, "I CAN DO THIS'!
Wednesday, April 17, 2019
Jewelry.
Bone marrow biopsy went pretty well. We were there by 5:45. They took me to a room to register me. Can’t understand why they even call to preregister you and you still have to go register again. Well, that took about 15 minutes. Then we waited until 6:25 till the volunteer took a group of us to another room to wait for our nurse to come get me for prep. That was about close to 6:50. Took me back to the prep room for surgery. Routine stuff. Change into a hospital gown, put the blood pressure monitor on your arm, the finger tape with the monitor for your heart rhythm, access my port for labs and anesthesia later, ask a bunch of questions, bring Bill back, talk to doctor, talk to anesthesiologist, talk to nurses that will be in the room with me. Finally ready at 7:54. Once in room at 7:57, roll over on table at 7:58, done. I am out. It seemed to be pretty important with these times the nurse was saying to one another. Now in the recovery room. Bill is there. Need to stay an hour once I am awake. Home around 11. Something to eat and to bed. Slept till about 3. Fell asleep sitting in my chair and in bed by 9:30. Slept till 8 next morning. A little sore next day but nothing I can’t stand. Just feels like a bruise.
Tuesday was my Dex, Kyprolis and Myeloma labs. Once I had my port accessed, back to the infusion room we went. Had to wait on labs. Nurse told me it was Zometa time. So infused that first and then the Kyprolis.
Now, tomorrow. As much as I tried to put it out of my mind, I just couldn’t. 2 1/2 hours. I told Bill when I got up that I was going to cancel. Didn’t think I could do 2 1/2 hours. He wasn’t real happy about my decision but left it up to me. I called the MRI department and thought maybe if they could answer some questions, I may change my mind and try to get it done. Well, didn’t take me long to cancel. When I asked if this was the “wide” MRI machine, she said no. Wide one was not scheduled. WHAT? It’s in my record that I need the wide one. That I am very claustrophobic. Can it be changed to the wide one? Yes, May 23rd. Cancel and don’t schedule the 23rd. On the phone and email with Dr. Sarriera’s office. Ana was right on top of it. MRI, OPEN MRI, is now schedule for next Wednesday, April 23rd. They will only do the thoracic and cervical scan that day. The lumber scan will be done on the 30th of April. Dr. Sarriera was kept in the loop and agreed to all the changes. Thank you Ana for putting me first this morning. I was very upset and stressed. Ana took my problem and ran with it till it worked for me.
Still on for the Pet Scan Monday. Kyprolis and Dex Tuesday. New MRI Wednesday. Appointment with Dr. Sarriera Friday. Then last MRI on Wednesday.
I always leave my sewing room covered in pieces of threads and material. I was IMing with another quilter I have met online and she told me this is called quilters jewelry.
Quote:
One day at a time, one step at a time. Do what you can, do your best. Let God handle the rest.
Bone marrow biopsy went pretty well. We were there by 5:45. They took me to a room to register me. Can’t understand why they even call to preregister you and you still have to go register again. Well, that took about 15 minutes. Then we waited until 6:25 till the volunteer took a group of us to another room to wait for our nurse to come get me for prep. That was about close to 6:50. Took me back to the prep room for surgery. Routine stuff. Change into a hospital gown, put the blood pressure monitor on your arm, the finger tape with the monitor for your heart rhythm, access my port for labs and anesthesia later, ask a bunch of questions, bring Bill back, talk to doctor, talk to anesthesiologist, talk to nurses that will be in the room with me. Finally ready at 7:54. Once in room at 7:57, roll over on table at 7:58, done. I am out. It seemed to be pretty important with these times the nurse was saying to one another. Now in the recovery room. Bill is there. Need to stay an hour once I am awake. Home around 11. Something to eat and to bed. Slept till about 3. Fell asleep sitting in my chair and in bed by 9:30. Slept till 8 next morning. A little sore next day but nothing I can’t stand. Just feels like a bruise.
Tuesday was my Dex, Kyprolis and Myeloma labs. Once I had my port accessed, back to the infusion room we went. Had to wait on labs. Nurse told me it was Zometa time. So infused that first and then the Kyprolis.
Now, tomorrow. As much as I tried to put it out of my mind, I just couldn’t. 2 1/2 hours. I told Bill when I got up that I was going to cancel. Didn’t think I could do 2 1/2 hours. He wasn’t real happy about my decision but left it up to me. I called the MRI department and thought maybe if they could answer some questions, I may change my mind and try to get it done. Well, didn’t take me long to cancel. When I asked if this was the “wide” MRI machine, she said no. Wide one was not scheduled. WHAT? It’s in my record that I need the wide one. That I am very claustrophobic. Can it be changed to the wide one? Yes, May 23rd. Cancel and don’t schedule the 23rd. On the phone and email with Dr. Sarriera’s office. Ana was right on top of it. MRI, OPEN MRI, is now schedule for next Wednesday, April 23rd. They will only do the thoracic and cervical scan that day. The lumber scan will be done on the 30th of April. Dr. Sarriera was kept in the loop and agreed to all the changes. Thank you Ana for putting me first this morning. I was very upset and stressed. Ana took my problem and ran with it till it worked for me.
Still on for the Pet Scan Monday. Kyprolis and Dex Tuesday. New MRI Wednesday. Appointment with Dr. Sarriera Friday. Then last MRI on Wednesday.
I always leave my sewing room covered in pieces of threads and material. I was IMing with another quilter I have met online and she told me this is called quilters jewelry.
Quote:
One day at a time, one step at a time. Do what you can, do your best. Let God handle the rest.
Sunday, April 14, 2019
Smiley.
The requested tests Dr. Sarriera ordered to see the progression of my Myeloma have been scheduled for this week and next.
Tomorrow, April 15th, will start with my bone marrow biopsy. This biopsy will be done at ORMC (Orlando Reginal Medical Center) which is part of UF Health Cancer Center. And I will be under anesthesia. We have to be at the hospital by 6 AM. Will have to leave here by 5:15. Surgery scheduled for 8 AM.
Tuesday, April 16th, is my chemo infusion of Kyprolis. Should be a short day. Do need to have Myeloma labs drawn along with my regular labs (CBC and CMP). Dex day too.
Scheduled for Thursday, April 18th, is the MRI. This will be a 2 1/2 hour scan. I hope I can do this one, claustrophobia that I am. Dr. Sarriera prescribes anxiety meds to help me through it.
Then, Monday, April 22nd, we have scheduled the Pet Scan. Another test that I need anxiety meds for.
Tuesday, April 23rd, chemo infusion of Kyprolis. Dex of course too.
Friday, April 26th, is our appointment with Dr. Sarriera to discuss all the results from the above tests. Praying that nothing shows up. But in my heart, I think there may be Myeloma lurking somewhere again. Dr. Sarriera will have a plan if it shows it’s ugly face.
Been thinking about my great grandmother especially when I am sewing. Grandma Smiley. She was the one who taught me to sew using a “Treadle” machine. No electric there. Just use your feet to operate. We made quilts, rugs, dish rags, pillows, doll clothes and more. Wish I had that machine to teach my granddaughters to sew on.
Quote:
In the darkest times, Hope is something you give yourself.
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