Horseshoe.
Today was my last treatment of chemo for this cycle. Also, had Multiple Myeloma labs drawn for my appointment with Dr. Sarriera next week. Treatment appointment today, Tuesday, March 26th was at 12:30. Labs were drawn about 12:15 and I was done with treatment around 1:45. Then on to my appointment with Dr. Sarriera regarding the pain in my abdomen.
Here is what lead up to my appointment today. The pain last Tuesday continued off and on all day until 10 PM. Emails back and forth to Dr. Sarriera's office that day and the next few days. Abby read the last Pet Scan and nothing was seen. So an appointment was made for today to discuss this pain. Meanwhile, I made an appointment with our family doctor, Dr. Young-Henley. That appointment was last Thursday, March 21st. I explained to her my symptoms and she did an abdominal exam. She concluded I have a hernia in my small intestines. She explained the a lot of women have hernias there that continue to worsen as time goes on. One of the culprits is being overweight, which I am. A lot more than shows. There seems to be no rhyme or reason when these attacks hit. We had explained that we had watched what I have eaten also. Dr. Henley told us these hernias are very hard to detect on MRI's, CT scans, Pet Scans, Sonagrams unless I would be having one of these attacks during the scans. She suggested that I see a surgeon. Her office would be sending a referral to one and they would contact me to set up the appointment. Haven't heard from anyone yet.
My appointment to see Dr. Sarriera about Dr. Henley's findings was today as I mentioned above. First another hematologist/oncologist came in and discussed what was said via Dr. Henley. Did an exam and left to get Dr. Sarriera. We, again, discussed what Dr. Henley have concluded from her exam. He felt that I should go see a surgeon. I told Dr. Sarriera I would rather use a surgeon that was part of UF Health Cancer Center since they have all my medical record; labs, treatments etc over the last 2 1/2 years. I need to be near the Cancer Center and my team of doctors and oncology nurses. Peace of mind for me and Bill. Dr. Sarriera was in agreement with me. First he wants me to have a CT scan with and without contrast. He then suggested that I see one of their surgeons that specializes in hernias (as well as other surgeries too). Dr. Jeffery Smith. His office will contact me to set up the appointment. My appointment for the Cat Scan is scheduled for April 5th. Hope this is the answer to my pain. I had a minor attack Saturday. Was able to sit down and recline in a chair and it went away. Did not come back again. Nothing since Saturday. Praying, if I have an attack, it is a minor one that goes away with just reclining and doesn't come back. Praying this is the answer.
So my free week next week is booked. Monday is free. Tuesday I take Kristi to have surgery on her gums and will get the girls and take them to dinner. Wednesday is mom's 89th birthday. Thursday is my appointment with Dr. Sarriera regarding Myeloma labs. Friday is my CT scan appointment. So much for a free week for Bill and I.
My brother Rick and Leslie came to visit for a long weekend. They got here last Friday around midnight. Yes, I waited up on them. Little brother you know. They left around 2 on Monday.
Sunday night after dinner Bill, Rick, Leslie and I sat outside on the patio till 2 AM just talking and reminiscing. At some point, I mentioned how Rick would bring his sisters pies when he would come to visit. This prompted a story from Rick as how his dad would always take pies to his sisters too only to find out years later they didn't like the pies he brought. LOL!! I asked Rick what kind of pies his dad took. Rick told us they were Horseshoe Fly pies. Huh??? No wonder they didn't like them. Ha, ha!! Do you mean Shoo Fly pies Rick?
Quote:
God is watching over me. I know because my family and friends have asked Him to.
Tuesday, March 26, 2019
Wednesday, March 20, 2019
70
Good day Monday. Tuesday, March 19th not such a good day. Woke up fine but around 9 got that pain in my right abdomen. Continued to worsen as the morning went along. My chemo treatment of Kyprolis was scheduled for 12:30. Laying and sitting help the pain subside. Used my tummy tamer oil mixture. Finally got a shower and ready to go. Left here around 11:30 and got to the Cancer Center around 12. WOW. Spring break for the kids so traffic was light and it was raining. Made it through the treatment without the pain. Talk to my oncology nurse about it.
We left there and wanted to stop at Publix for a few things. Till I was done getting what we wanted, the pain was back. This pain kept up all day off and on until 10 that night. I contacted Dr. Sarriera's office to request the Pet Scan be read again concentrating on the right side. Dr. Sarriera is on vacation until Friday. Abby is in but very busy covering for Dr. Sarriera so I didn't hear from her. Did discuss with Ana their oncology nurse. She had me take a pain pill. Plus, my Dex helped with the inflammation. This pain usually goes away in about 1/2 hour if I sit or lay down. And stays away. But this attack like yesterdays, hit me again right before Bob and Louise visited. Lasted 1/2 day. Then several times again but the minor attack.
What is this? Is it gall bladder, diverticulitis, my appendix (if I still have them), gall stones, kidney stones???? I have had MRi"s, Catscan's, Sonigrams off and on for years. This pain started several years ago in PA. Nothing ever shows up. And it's getting worse. All I know is I am afraid it's going to happen again. Hoping my doctor's figure something out. I will be emailing them again tomorrow.
Today the pain wasn't there. But if I press on the area where it was yesterday, it's sore feeling. So frustrating. Today I had my normal morning headache from the chemo treatment yesterday. And, of course, my rash from the Dex. Headache gone once up a bit. Rash is ruby red tonight but will fade the next few days. Just need the fatigue to go away before my brother gets here. If not, he will understand.
Sandy and Denny left today. They were here for 5 weeks. Didn't see much of them as they had visitors 3 of the 5. Good for them. Got to see her Dad and Ann, John and Deb and Brian and Andrea for a bit.
My brother and Leslie come Friday night and will be here till Monday. Will be great to see them. Nothing planned but to enjoy their company. Of course, mom says he has to take her to dinner somewhere.
One more week of my one day Kyprolis treatment next week then I will be off for a week. Yeah. Hope I feel better then I did the last one I had off. My body is still getting used to this treatment plan. Darzalex and Dex the same but Kyprolis is less. Forever!!! Or until they find a cure for Multiple Myeloma. Getting closer and closer they say. Pray this is right. Need a cure. Need a break from chemo, Dex, Darzalex. I know this Neuropathy will always be a part of me but maybe not as bad if I am not on chemo meds. Need a cure!!! March is Multiple Myeloma month. Wear burgundy.
Bill brought our mail in the other day and said he thought he was called for jury duty. Then he said the letter said happy birthday too. May be a scam letter? Read it further and it stated that he no longer would be called for jury duty because he was about to turn 70 if he wanted to opt out. Of course he opted out and sent the signed and dated letter back. Another good reason to move to Florida or do other states do this? I thought 70 was the speed people drive in Florida in a 45 speed limit area. Ha!
Quote:
For HOPE, SUPPORT and a CURE, I wear burgundy for Multiple Myeloma.
Good day Monday. Tuesday, March 19th not such a good day. Woke up fine but around 9 got that pain in my right abdomen. Continued to worsen as the morning went along. My chemo treatment of Kyprolis was scheduled for 12:30. Laying and sitting help the pain subside. Used my tummy tamer oil mixture. Finally got a shower and ready to go. Left here around 11:30 and got to the Cancer Center around 12. WOW. Spring break for the kids so traffic was light and it was raining. Made it through the treatment without the pain. Talk to my oncology nurse about it.
We left there and wanted to stop at Publix for a few things. Till I was done getting what we wanted, the pain was back. This pain kept up all day off and on until 10 that night. I contacted Dr. Sarriera's office to request the Pet Scan be read again concentrating on the right side. Dr. Sarriera is on vacation until Friday. Abby is in but very busy covering for Dr. Sarriera so I didn't hear from her. Did discuss with Ana their oncology nurse. She had me take a pain pill. Plus, my Dex helped with the inflammation. This pain usually goes away in about 1/2 hour if I sit or lay down. And stays away. But this attack like yesterdays, hit me again right before Bob and Louise visited. Lasted 1/2 day. Then several times again but the minor attack.
What is this? Is it gall bladder, diverticulitis, my appendix (if I still have them), gall stones, kidney stones???? I have had MRi"s, Catscan's, Sonigrams off and on for years. This pain started several years ago in PA. Nothing ever shows up. And it's getting worse. All I know is I am afraid it's going to happen again. Hoping my doctor's figure something out. I will be emailing them again tomorrow.
Today the pain wasn't there. But if I press on the area where it was yesterday, it's sore feeling. So frustrating. Today I had my normal morning headache from the chemo treatment yesterday. And, of course, my rash from the Dex. Headache gone once up a bit. Rash is ruby red tonight but will fade the next few days. Just need the fatigue to go away before my brother gets here. If not, he will understand.
Sandy and Denny left today. They were here for 5 weeks. Didn't see much of them as they had visitors 3 of the 5. Good for them. Got to see her Dad and Ann, John and Deb and Brian and Andrea for a bit.
My brother and Leslie come Friday night and will be here till Monday. Will be great to see them. Nothing planned but to enjoy their company. Of course, mom says he has to take her to dinner somewhere.
One more week of my one day Kyprolis treatment next week then I will be off for a week. Yeah. Hope I feel better then I did the last one I had off. My body is still getting used to this treatment plan. Darzalex and Dex the same but Kyprolis is less. Forever!!! Or until they find a cure for Multiple Myeloma. Getting closer and closer they say. Pray this is right. Need a cure. Need a break from chemo, Dex, Darzalex. I know this Neuropathy will always be a part of me but maybe not as bad if I am not on chemo meds. Need a cure!!! March is Multiple Myeloma month. Wear burgundy.
Bill brought our mail in the other day and said he thought he was called for jury duty. Then he said the letter said happy birthday too. May be a scam letter? Read it further and it stated that he no longer would be called for jury duty because he was about to turn 70 if he wanted to opt out. Of course he opted out and sent the signed and dated letter back. Another good reason to move to Florida or do other states do this? I thought 70 was the speed people drive in Florida in a 45 speed limit area. Ha!
Quote:
For HOPE, SUPPORT and a CURE, I wear burgundy for Multiple Myeloma.
Monday, March 11, 2019
Frogs.
Tonight was our support group meeting. My "happy place" for a few hours. Sandy and Denny were able to go along. So glad they went. I did ask Sandy who would have thought several years ago that we four would be sitting in a meeting to hear someone speak about a drug that fights Myeloma. Life happens. Our speaker tonight was a Darzalex rep. WOW. Another great speaker. And of course, this was right up our alley since this is my drug. She had been an oncology nurse for 33 years and now represents Darzalex. A wealth of information. So much of it Bill and I knew since I have been using it since last May but she added more information. Again, great speaker.
Tonight was also emotional for us. We lost one of our Myeloma family. Gene. But not from his Myeloma. Gene has been struggling with Myeloma, prostate cancer and Agent Orange. Gene lost his life to kidney failure. Don't know all the details yet but really hit home. He, his wife, daughter, son-in-law and granddaughter have been coming to our meetings forever. Gene will be missed. God be with his family.
Ken, Arlene, Benn, David, Jan, Don, Cynthia, Alex. Several of the "ole" members there tonight. Always so glad to see them walk in the door. And glad to see and meet our new members.
O5. That's what we call ourselves. Started with Louise saying at a 250 drawing that she had her original $5 to gamble with and she needed to leave with her original $5. Me, Sandy, Louise, Cheri and Deb made up the O5. We are still the O5 even thought Cheri and I have moved away. Well, last week we had 4 of the O5 get together. Me, Louise, Sandy and Deb. Louise and Bob came to visit with Bill and I Monday and left Friday. Deb and John came to visit with Sandy and Denny on Monday and left the following Monday. So Louise, Sandy, Deb and I were able to have a reunion (minus a bad Dex night). We did get to go shopping. Louise said it was like old times with me being in charge. Cheri was missed of course. She gets back to PA and is able to spend time with them then. One day, it will be the 5 of us somewhere. On my bucket list.
Tomorrow I have my monthly infusion of Darzalex along with Kyprolis and Dex. Then the next two weeks will be Kyprolis and Dex. Then a week off. This will be my schedule forever. This will be our Myeloma life. This will be my life.
As you all know, I follow Benn's progress. He and I seem to have the same ups and downs but yet completely different. Hard to explain Myeloma ways. He even alluded to us as twins tonight at our meeting. Seems he may be starting on Darzalex too. Will know more after his next doctor's appointment.
When we first moved in to our home, we had so many frogs on our back patio, we decided to screen the patio in. And it sure did help get rid of the frogs. The other day Bill texted me and said we had a frog in the corner of the soffit at one end of the patio and another frog somewhere else at the other end of the patio. And they were talking back and forth to each other. I looked but couldn't see any frogs anywhere nor did I hear them. After about 10 minutes, I mentioned to Bill that Kristi was trying to call him. At that time, Bill realized that it was Kristi calling him and her ring tone (he set it up as a frog chirping or whatever it is they do) was what he was hearing and not real frogs. Come on laugh. It was funny.
Quote:
Memories. Let them fill your mind, warm your heart and help lead you through this life of cancer.
Tonight was our support group meeting. My "happy place" for a few hours. Sandy and Denny were able to go along. So glad they went. I did ask Sandy who would have thought several years ago that we four would be sitting in a meeting to hear someone speak about a drug that fights Myeloma. Life happens. Our speaker tonight was a Darzalex rep. WOW. Another great speaker. And of course, this was right up our alley since this is my drug. She had been an oncology nurse for 33 years and now represents Darzalex. A wealth of information. So much of it Bill and I knew since I have been using it since last May but she added more information. Again, great speaker.
Tonight was also emotional for us. We lost one of our Myeloma family. Gene. But not from his Myeloma. Gene has been struggling with Myeloma, prostate cancer and Agent Orange. Gene lost his life to kidney failure. Don't know all the details yet but really hit home. He, his wife, daughter, son-in-law and granddaughter have been coming to our meetings forever. Gene will be missed. God be with his family.
Ken, Arlene, Benn, David, Jan, Don, Cynthia, Alex. Several of the "ole" members there tonight. Always so glad to see them walk in the door. And glad to see and meet our new members.
O5. That's what we call ourselves. Started with Louise saying at a 250 drawing that she had her original $5 to gamble with and she needed to leave with her original $5. Me, Sandy, Louise, Cheri and Deb made up the O5. We are still the O5 even thought Cheri and I have moved away. Well, last week we had 4 of the O5 get together. Me, Louise, Sandy and Deb. Louise and Bob came to visit with Bill and I Monday and left Friday. Deb and John came to visit with Sandy and Denny on Monday and left the following Monday. So Louise, Sandy, Deb and I were able to have a reunion (minus a bad Dex night). We did get to go shopping. Louise said it was like old times with me being in charge. Cheri was missed of course. She gets back to PA and is able to spend time with them then. One day, it will be the 5 of us somewhere. On my bucket list.
Tomorrow I have my monthly infusion of Darzalex along with Kyprolis and Dex. Then the next two weeks will be Kyprolis and Dex. Then a week off. This will be my schedule forever. This will be our Myeloma life. This will be my life.
As you all know, I follow Benn's progress. He and I seem to have the same ups and downs but yet completely different. Hard to explain Myeloma ways. He even alluded to us as twins tonight at our meeting. Seems he may be starting on Darzalex too. Will know more after his next doctor's appointment.
When we first moved in to our home, we had so many frogs on our back patio, we decided to screen the patio in. And it sure did help get rid of the frogs. The other day Bill texted me and said we had a frog in the corner of the soffit at one end of the patio and another frog somewhere else at the other end of the patio. And they were talking back and forth to each other. I looked but couldn't see any frogs anywhere nor did I hear them. After about 10 minutes, I mentioned to Bill that Kristi was trying to call him. At that time, Bill realized that it was Kristi calling him and her ring tone (he set it up as a frog chirping or whatever it is they do) was what he was hearing and not real frogs. Come on laugh. It was funny.
Quote:
Memories. Let them fill your mind, warm your heart and help lead you through this life of cancer.
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