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.
Saturday, July 27, 2019
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.
Subscribe to:
Posts (Atom)