Mari
Today was cycle 4, week 2, day 1. Had to be at the Cancer Center by 11 for an appointment with
Dr. Nanda, my radiation oncologist. He and Dr. Sarriera meet with other team of doctors to review their patient's cases. He knew there was a small lump that appeared two days before the radiation treatments were done. He knew this lump was not in the radiation range. He knew that Dr. Sarriera started a treatment plan immediately. He knew all about me and what was happening. This sharing of info between my doctors is wonderful. This, once again, makes me realize that UF Health Cancer Center is the best.
Dr. Nanda asked if my hair was growing back in the radiation area to which I responded no. And said I don't feel it will. Dr. Nanda then ask to see my head. He felt for the small lump which is no longer there. Then he examined the targeted radiation area. Said it looked good. And that he notice some hair growth. What? Really? That's great. My prayers are being answered. He told me to be patient as it may take 6 months or more from the radiation days for it to grow back. Bill said to me this morning and some other times that he noticed some hair but I guess I was too busy getting ready to really check it out. Sorry. It's very hard for me to look at this area and if I do, it can throw me in to a cry!! But I will be taking the mirror and looking now. Wonderful feeling knowing it is growing back, however slow and however much. I will take it.
Great appointment with Dr. Nanda. Will not have to see him unless there is need for radiation in the future. And we hope not!
Just took my 11 Cyclophosphamide chemo pills. That made my 30 pills for the day. Just part of my routine, just part of my routine.
Left his office and went up to 5LP for my Kyprolis drip knowing it was only 11:45 and my appointment wasn't until 1. But wanted to get my lines in my port and have the labs drawn. This way my lab results would be ready when I went to my room at 1. They did the line insertion and the labs right away. Then Bill and I went for some lunch.
Back up to to 5LP around 12:45. They were calling my name to go back to my room as we got off the elevator. Tammy was my nurse. Called me Sunshine. Labs were done and results were available to see. You all have read that my Bilirubin has been high. 2.0, 2.2, 2.4 Well today it was 1.3. Bill and I both asked Tammy if she was sure she was reading my results. ;) Waited about 20 minutes for the pharmacy to mix the Kyprolis. Then hooked up for the drip, some fluids and done. As I was getting done, I had a visitor. Pat (HOA president's wive), stopped by to say hi. She is so sweet to do that.
Tomorrow will be cycle 4, week 2, day 2. I will be getting my Kyprolis and my Zometa. Then done for the week with drips.
Pet scan is Thursday, November 30th. Oh, that is only 2 days away. Preparing for that. Will be taking an Ativan for sure since Bill can not go back with me. 60 minutes in a room alone while the dye goes through my body. Then about 45 minutes for the scan. I can do this. I did it in June. I can do this. I can do this. Well, maybe. ;0
Today I met Mari. Such a wonderful feeling after talking with her. She just happened to be in the library at the Cancer Center when I went in to drop of flyers about out Myeloma support group. She was diagnosed in 2003. Mari was an avid hiker, skier back then. Had a pain in her back that kept getting worse. Thus, results showed Myeloma. It had eaten away one of her vertebras. Mari was chosen for a clinical trial in Arkansa. In this trial, she had two transplants back to back. One in March of that year and one in June of that year. I mentioned that she wouldn't have even been healed from the first one. WOW. I can't imagine. But in 2003 there wasn't a lot known about Myeloma. These clinical trials were ways of researching whether treatments etc are safe and effective for humans using human volunteers. Mari has been a survivor for 14 years. Has been able to return to her hiking, skiing. Mari was a great inspiration for Bill and me today.
Quote:
Healing takes courage. And courage we have, even if we have to dig to find it.
Tuesday, November 28, 2017
Sunday, November 26, 2017
Icicles.
Just a quick update since I haven't been on for a while. Started my Cycle 4, day 1 and day 2 last Tuesday and Wednesday. Also, had my immunizations on Wednesday. Only 4 of them. Could not administer the polio vaccine. It's a live vaccine and couldn't be done since I am currently during treatments. Thanks to the pharmacist that reviewed the orders for these vaccines. I felt very proud of my Cancer Center. I am but one of thousands of patients but this pharmacist did their job and stopped my polio vaccine from being administered. The other four that were okay were injected in to my muscles, two in each arm. I must say, they hurt!!!!!
My sisters are here. My sisters were here. Both my sisters flew to FL to spend Thanksgiving with me, Bill, Mom and Kristi and family. Mom knew that Cheri was flying in from CA but had no idea Deb was flying in too. She was really surprised. They both got here on Thanksgiving day. Deb leaves tomorrow and Cheri on Tuesday. We really had a great time. Laughing, reminiscing, crying, shopping, eating and things that sisters do. I was able to hold my own with them even though I was tired. Glad they came after day 1 and 2 of my cycle as till the end of cycle, I am totally wiped out. Then I have my 13 days to recover.
Mom was able to spend time with Cheri and Deb too. Kristi picked her up on Thanksgiving morning and we just took her home today. Very upsetting for her to say goodbye to them.
My Kerri has been having a battle with her health too. She was admitted to the hospital a few days before Thanksgiving. Breathing and oxygen problems. Has been discharged. Still battling it. Hoping and praying they get this straightened out. She is on her way to healing but has a long way to go. I hate that I am not closer to help her through this. So glad she has a wonderful, caring husband and wonderful, caring kids.
We finally have a bit of winter weather in Florida as I have seen icicles in the trees on the way to the Cancer Center. No wait, I do believe they are Christmas decorations. ;)
Quote:
Friends pick us up when we fall down and if they can't pick us up, they lie down with us and listen for a while.
Just a quick update since I haven't been on for a while. Started my Cycle 4, day 1 and day 2 last Tuesday and Wednesday. Also, had my immunizations on Wednesday. Only 4 of them. Could not administer the polio vaccine. It's a live vaccine and couldn't be done since I am currently during treatments. Thanks to the pharmacist that reviewed the orders for these vaccines. I felt very proud of my Cancer Center. I am but one of thousands of patients but this pharmacist did their job and stopped my polio vaccine from being administered. The other four that were okay were injected in to my muscles, two in each arm. I must say, they hurt!!!!!
My sisters are here. My sisters were here. Both my sisters flew to FL to spend Thanksgiving with me, Bill, Mom and Kristi and family. Mom knew that Cheri was flying in from CA but had no idea Deb was flying in too. She was really surprised. They both got here on Thanksgiving day. Deb leaves tomorrow and Cheri on Tuesday. We really had a great time. Laughing, reminiscing, crying, shopping, eating and things that sisters do. I was able to hold my own with them even though I was tired. Glad they came after day 1 and 2 of my cycle as till the end of cycle, I am totally wiped out. Then I have my 13 days to recover.
Mom was able to spend time with Cheri and Deb too. Kristi picked her up on Thanksgiving morning and we just took her home today. Very upsetting for her to say goodbye to them.
My Kerri has been having a battle with her health too. She was admitted to the hospital a few days before Thanksgiving. Breathing and oxygen problems. Has been discharged. Still battling it. Hoping and praying they get this straightened out. She is on her way to healing but has a long way to go. I hate that I am not closer to help her through this. So glad she has a wonderful, caring husband and wonderful, caring kids.
We finally have a bit of winter weather in Florida as I have seen icicles in the trees on the way to the Cancer Center. No wait, I do believe they are Christmas decorations. ;)
Quote:
Friends pick us up when we fall down and if they can't pick us up, they lie down with us and listen for a while.
Tuesday, November 14, 2017
Yellow mustard.
Today is one year ago that I had my stem cell transplant. One year ago they put back, via an hour drip, 3.6 million stem cells of the 9.35 million I harvested on November 8, 2016. One year ago today, I was at Moffitt Cancer Center in Tampa and would be in Tampa for another 26 days since check in on the 12th. One year ago today, I had no idea of the path that I was about to travel for the next year. One year ago today, Bill and I were joined at the hip as he had to be with me 24 hours a day once I was released from the hospital to the hotel. One year ago today, they said was my day zero, my new birthday. One year ago today, I was, I was, I was.
Today, November 14, 2017, I am still battling active Myeloma but have come a long way from last year this time. Today, am I frustrated? Today, am I worried? Today, am I sad? Today, am I disappointed? Yes to frustration, worried, sad, disappointed. But also yes to, do I think Dr. Sarriera has a handle on my Myeloma journey. Yes to I have to have faith in my life to make this Myeloma journey. Yes to not curable but treatable. Yes to all the new studies out there looking for a cure for Multiple Myeloma. Yes to ME!!! Yes to BILL!!!
Last night was our Myeloma support group meeting. As always, great meeting. The two new guests came back. That's wonderful. Our members are growing. This was a pot luck dinner and fund raiser for the IMF (International Myeloma Foundation). There were about 35 persons, members and caregivers. So figure about 17 Myeloma patients coupled with their caregivers. And, drum roll please, we donated last night $1,020.00. I thought that was wonderful for so little members. The IMF sponsors our support group. They have so much free literature available to us. They have free webinars. They have a free magazine. They have free IMF Infoline available to us. On and on. Great Foundation. Glad to be a part of the IMF. One of the drug companies provided us with a spiral ham and a turkey breast to accompany our pot luck casseroles and desserts. The left over ham was being taken to the food bank near one of our members. Continuing to pay it forward.
Our speaker was a transplant doctor from Greenville, SC. Of course her plane in to Orlando was delayed but she eventually made it. We were able to fill in with another speaker that was also there. The doctor talked in depth about Myeloma. Even though Bill and I know a lot about Myeloma, we always pick up new information from the speakers. She was a wealth of information for sure.
At the end, she was answering questions from the members. One of them asked what she recommended for leg cramps? She told us some of her patients swear by tonic water. The one who asked the question agreed and added - have you heard about yellow mustard? Well, Bill and I just about fell off our chairs. Denny Domer has been saying this for years!!!! See Denny, this made it to the transplant doctor's office. Oh, she said - why yes. Several of my patients have told me this. The person who questioned this also agreed on the mustard remedy as well as several of our other members.
Quote:
Cancer changes us. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, prays more freely and lives more emotionally.
Today is one year ago that I had my stem cell transplant. One year ago they put back, via an hour drip, 3.6 million stem cells of the 9.35 million I harvested on November 8, 2016. One year ago today, I was at Moffitt Cancer Center in Tampa and would be in Tampa for another 26 days since check in on the 12th. One year ago today, I had no idea of the path that I was about to travel for the next year. One year ago today, Bill and I were joined at the hip as he had to be with me 24 hours a day once I was released from the hospital to the hotel. One year ago today, they said was my day zero, my new birthday. One year ago today, I was, I was, I was.
Today, November 14, 2017, I am still battling active Myeloma but have come a long way from last year this time. Today, am I frustrated? Today, am I worried? Today, am I sad? Today, am I disappointed? Yes to frustration, worried, sad, disappointed. But also yes to, do I think Dr. Sarriera has a handle on my Myeloma journey. Yes to I have to have faith in my life to make this Myeloma journey. Yes to not curable but treatable. Yes to all the new studies out there looking for a cure for Multiple Myeloma. Yes to ME!!! Yes to BILL!!!
Last night was our Myeloma support group meeting. As always, great meeting. The two new guests came back. That's wonderful. Our members are growing. This was a pot luck dinner and fund raiser for the IMF (International Myeloma Foundation). There were about 35 persons, members and caregivers. So figure about 17 Myeloma patients coupled with their caregivers. And, drum roll please, we donated last night $1,020.00. I thought that was wonderful for so little members. The IMF sponsors our support group. They have so much free literature available to us. They have free webinars. They have a free magazine. They have free IMF Infoline available to us. On and on. Great Foundation. Glad to be a part of the IMF. One of the drug companies provided us with a spiral ham and a turkey breast to accompany our pot luck casseroles and desserts. The left over ham was being taken to the food bank near one of our members. Continuing to pay it forward.
Our speaker was a transplant doctor from Greenville, SC. Of course her plane in to Orlando was delayed but she eventually made it. We were able to fill in with another speaker that was also there. The doctor talked in depth about Myeloma. Even though Bill and I know a lot about Myeloma, we always pick up new information from the speakers. She was a wealth of information for sure.
At the end, she was answering questions from the members. One of them asked what she recommended for leg cramps? She told us some of her patients swear by tonic water. The one who asked the question agreed and added - have you heard about yellow mustard? Well, Bill and I just about fell off our chairs. Denny Domer has been saying this for years!!!! See Denny, this made it to the transplant doctor's office. Oh, she said - why yes. Several of my patients have told me this. The person who questioned this also agreed on the mustard remedy as well as several of our other members.
Quote:
Cancer changes us. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, prays more freely and lives more emotionally.
Sunday, November 12, 2017
Turtles.
Last year on this day, November 12th, Bill and I packed the car with suitcases stuffed will clothes, mattress foam, pillows, blankets, my quilts, etc. and took off for Moffitt Cancer in Tampa, FL for almost 30 days. Check in day for me to prepare for my transplant.
Once I got in my room, I was poked, prodded, questioned, paper signer. Saline drip was started to prepare me for my high dose of chemo that night. Started the chemo drip around 10:30 PM. Took about an hour. More saline.
November 13th- my day of rest before the transplant. Slept a lot because of the Ativan I was given for nausea.
November 14th - transplant day. 3.6 million stem cells of 9.3 million that I gave were given back to me via a drip. Took an hour. This was my day zero. My birthday, they said.
Days of nausea, no energy, no appetite, sleeping, crying, praying. What memories I have that I never, and never will, blogged about. Days of wanting to go home.
November 27th - was able to leave the hospital and check in to the hotel. Hotel that was approved by Moffitt. Room has to be up to Moffitt's standards. Each day, we had to go back to Moffitt for my blood to be drawn. Usually had to stay and have fluids administered. So tired and weak most days. Bill would get a wheel chair to take me to my appointments.
December 6th - Loved this day. Dr. Ocoha released me to go home. It was late till I got out of the hospital so Bill and I decided we would just stay at the hotel overnight and leave in the morning. After a few issues in the morning, we finally got on the road and headed home close to noon. Hello Casselberry. Hello Tommy!!!!
Then the days to follow were filled with trying to build up my energy level, my appetite. Days of feeling proud that I walked two houses up, started to eat more then mashed potatoes, not getting sick as much, having some company, trying to do some housework and just trying to get back to normal.
Now it's one year later. All that above I needed to write to just bring it from last year and how much has changed a year later. I will never forgot those 26 days. They are etched in my mind forever. 26 days.
The story continues one year later with me still have some active Myeloma. Still not hearing the remission word. Still having to do treatments. Still trying to beat this!!!! And I will!!!! And I will!!!
We still have a lot of lakes and other bodies of water that are very high. Last week on the way to the Cancer Center I noticed a big pipe in this one lake. I usually watch the birds on the shorelines when we pass by. Being nosy, I wanted to see what this pipe was for. Well, I found out. There were about 6 or 7 nice sized turtles sitting on the pipe. Guess it was put in there for them and not for draining.
Quote:
Find the courage to move forward one day at a time.
Last year on this day, November 12th, Bill and I packed the car with suitcases stuffed will clothes, mattress foam, pillows, blankets, my quilts, etc. and took off for Moffitt Cancer in Tampa, FL for almost 30 days. Check in day for me to prepare for my transplant.
Once I got in my room, I was poked, prodded, questioned, paper signer. Saline drip was started to prepare me for my high dose of chemo that night. Started the chemo drip around 10:30 PM. Took about an hour. More saline.
November 13th- my day of rest before the transplant. Slept a lot because of the Ativan I was given for nausea.
November 14th - transplant day. 3.6 million stem cells of 9.3 million that I gave were given back to me via a drip. Took an hour. This was my day zero. My birthday, they said.
Days of nausea, no energy, no appetite, sleeping, crying, praying. What memories I have that I never, and never will, blogged about. Days of wanting to go home.
November 27th - was able to leave the hospital and check in to the hotel. Hotel that was approved by Moffitt. Room has to be up to Moffitt's standards. Each day, we had to go back to Moffitt for my blood to be drawn. Usually had to stay and have fluids administered. So tired and weak most days. Bill would get a wheel chair to take me to my appointments.
December 6th - Loved this day. Dr. Ocoha released me to go home. It was late till I got out of the hospital so Bill and I decided we would just stay at the hotel overnight and leave in the morning. After a few issues in the morning, we finally got on the road and headed home close to noon. Hello Casselberry. Hello Tommy!!!!
Then the days to follow were filled with trying to build up my energy level, my appetite. Days of feeling proud that I walked two houses up, started to eat more then mashed potatoes, not getting sick as much, having some company, trying to do some housework and just trying to get back to normal.
Now it's one year later. All that above I needed to write to just bring it from last year and how much has changed a year later. I will never forgot those 26 days. They are etched in my mind forever. 26 days.
The story continues one year later with me still have some active Myeloma. Still not hearing the remission word. Still having to do treatments. Still trying to beat this!!!! And I will!!!! And I will!!!
We still have a lot of lakes and other bodies of water that are very high. Last week on the way to the Cancer Center I noticed a big pipe in this one lake. I usually watch the birds on the shorelines when we pass by. Being nosy, I wanted to see what this pipe was for. Well, I found out. There were about 6 or 7 nice sized turtles sitting on the pipe. Guess it was put in there for them and not for draining.
Quote:
Find the courage to move forward one day at a time.
Wednesday, November 8, 2017
Hello Mrs. Snowberger.
Cycle 3, week 3, day 2. And the end of another cycle. My 13 days off. My chemo vacation. My will feel half way decent in about 3 to 4 days. My not having to run to the Cancer Center 2 times a week. My Uber drive Bill's vacation. My just putzing around the house days. It's amazing how 13 days are so freeing to me. Took them for granted for so many years. Life sure does change.
Got to the Cancer Center around 1. Signed in and was taken back to the draw station as they called it today. Had to have my lines put in and also a lab draw today to check my bilirubin numbers. Only one tube of blood. That was a first in a long while.
Once that was done, I was sent back to room 15. Oncology nurse today was Mike again. Next to Patrice, he is my favorite. Full of knowledge. Explained it would be a bit until labs were back, which we knew. Then once back, would have to then contact Dr. Sarriera if over 1.5. That's the limit Dr. Sarriera set before a call to see if okay to go on with the Kyprolis drip. They came back 2.2. Lower than yesterday but still high. Call into Ketty to contact Dr. Sarriera as to his instructions. Came back okay to administer the Kyprolis; which had already been mixed and delivered to the room by the pharmacy. Usually on Tuesdays they do not have to wait on labs before mixing. Mike started the drip and we were on the road home by around 3.
Now I am waiting to hear from the scheduling department as to my times and days of my next 4 to 6 cycles. Hoping for the Tuesdays and Wednesdays at 12:30 and 1:30. I figured I will be doing treatments until sometime in February if we go 4 more and sometime in April if we go 6 more. Whatever Dr. Sarriera does if okay by us just so we can knock this Myeloma out of me and give us some peace of mind for a long time. Been dealing with Myeloma since last July, 1 year and 4 months ago. Even though it's not curable and only treatable at this time, I don't want to be dealing with this magnitude of Myeloma next year this time.
Hello Mrs. Snowberger. Picking up today? That is what we heard as we walked in to the pharmacy at the Cancer Center today. That is a good feeling when they call you by your name. Hate that it's to pick up drugs though.
Quote:
Never let a stumble in the road be the end of your journey.
Cycle 3, week 3, day 2. And the end of another cycle. My 13 days off. My chemo vacation. My will feel half way decent in about 3 to 4 days. My not having to run to the Cancer Center 2 times a week. My Uber drive Bill's vacation. My just putzing around the house days. It's amazing how 13 days are so freeing to me. Took them for granted for so many years. Life sure does change.
Got to the Cancer Center around 1. Signed in and was taken back to the draw station as they called it today. Had to have my lines put in and also a lab draw today to check my bilirubin numbers. Only one tube of blood. That was a first in a long while.
Once that was done, I was sent back to room 15. Oncology nurse today was Mike again. Next to Patrice, he is my favorite. Full of knowledge. Explained it would be a bit until labs were back, which we knew. Then once back, would have to then contact Dr. Sarriera if over 1.5. That's the limit Dr. Sarriera set before a call to see if okay to go on with the Kyprolis drip. They came back 2.2. Lower than yesterday but still high. Call into Ketty to contact Dr. Sarriera as to his instructions. Came back okay to administer the Kyprolis; which had already been mixed and delivered to the room by the pharmacy. Usually on Tuesdays they do not have to wait on labs before mixing. Mike started the drip and we were on the road home by around 3.
Now I am waiting to hear from the scheduling department as to my times and days of my next 4 to 6 cycles. Hoping for the Tuesdays and Wednesdays at 12:30 and 1:30. I figured I will be doing treatments until sometime in February if we go 4 more and sometime in April if we go 6 more. Whatever Dr. Sarriera does if okay by us just so we can knock this Myeloma out of me and give us some peace of mind for a long time. Been dealing with Myeloma since last July, 1 year and 4 months ago. Even though it's not curable and only treatable at this time, I don't want to be dealing with this magnitude of Myeloma next year this time.
Hello Mrs. Snowberger. Picking up today? That is what we heard as we walked in to the pharmacy at the Cancer Center today. That is a good feeling when they call you by your name. Hate that it's to pick up drugs though.
Quote:
Never let a stumble in the road be the end of your journey.
Tuesday, November 7, 2017
Minehaha, Swoope, Wigwam, Beach View, Thistle.
Today is start of Cycle 3, week 3, day 1. Started out with an early appointment with Dr. Sarriera. 10 AM to be exact. So that meant leaving at 9. That meant me getting up and ready by 9. That meant an early day for me. Especially since my Kyprolis appointment wasn't until 12:30.
Got to the Cancer Center around 9:40. School traffic zones and normal back up of traffic at Lee Road and 17/92. Registered and only sat down about 5 minutes and was called back to Dr. Sarriera's room. Blood pressure (a little high on the second number), weight (OMG), bunches of questions. Then Abby came in to review my case. Had several questions for her to be discussed also with Dr. Sarriera before they came back together. Lab looked good for last two months. Will I be going another cycle? Why is my vitamin D so low? Will I every hear the word remission? What about my immunizations? No appointments for Kyprolis after this week? And of course, Desiree??
She answered a few. Probably will be another 3 cycles. Vitamin D (the Florida vitamin) should be in the range of 30 to 96, mine 19. Giving me a prescription 50,000 mg tablet to take once a week for 12 weeks and then to take a 5,000 mg over the counter tablet daily. Retest of vitamin D level in 3 months. No remission word yet. :( Will give me a partial response. Immunizations will be done probably in two to three weeks. My baby ones. Desiree is doing okay. Looks tired but happy. Babies are great. Bill and I miss her a lot. Abby listened to my heart and off to get Dr. Sarriera.
Not as much of a smile as the last time Dr. Sarriera came in to discuss my Myeloma. Shook hands with each of us and asked how I was feeling. Okay. Just my Friday, Saturday fatigue that gets worse as the cycles go on. Started with saying that my labs all look good except the light chain kappa/lambda ratio. It's on the low side. Mine 0.1575. Normal range - 0.2600-1.65. This low range means there is active Myeloma. Last months test registered 0.1618. Going down. Dr. Sarriera wants to continue with another 3 to 6 cycles (3 weeks on, 1 week off). Said there was never any chance at stopping after 3 cycles. He will reevaluate accordingly with labs, appointments with him and scans. During this time, he will order a Pet Scan before the end of the year. Oh, joy. Can you hear me freaking out already??? Also, discussed that I do not have any appointments for Kyprolis after tomorrow. Explained he does these appointments in blocks of time so will get me back on my schedule. Said he is more than likely going for 6 more cycles. Hello 2018. Talked mainly about the light chains. Once he is happy that my cycles have done their job, will work in a maintenance plan for me. Instructed Abby to get Pet Scan set up and immunizations scheduled. Appointment done. Little upset here. Holding back tears.
Down from 2 floor to pharmacy on 1st floor to order more Dex and Cytoxin for my Cycle 4.
Up to 5LP to see if anyway I could get in early. My appointment was at 12:30. Now 11. Registered for my for my lines and labs. Once they were completed, Bill and I went to lunch on the 4th floor. Then back up to 5LP around to wait for my 12:30 appointment. Never took us back to my room till 1. Then my bilirubin came back the highest it's been so far. 2.4. Had to contact Dr. Sarriera for instructions as which way to go. He was out on rounds. Finally got his instructions, Kyprolis ordered at pharmacy, sent up to room, drip started, done and on the way home around 3. I have to have labs done again Wednesday before my Kyprolis drip to check my bilirubin.
I talked with my oncology nurse, Stephanie, what I could do to help this? One thing she said was being on the meds I am on and not drinking enough water over a period of a few days may be part of the problem. Said you should drink in ounces 1/2 the amount of your weight. So I guess I need to lose weigh. Ha! That's another problem to be discussed at a later time.
Each time we go to the Cancer Center, I like to look at the street names. Minehaha, Swoope, Wigwam, Beach View, Thistle. Orange, Kyle, Packwood, Zelma, Marks, James, Madeleine, Hazel, Red Bug Lake, Pinesong. Some names of family and friends, some names that say Florida, some names that say Disney and some names that say home. I love Florida.
Quote:
Sometimes it hurts and the only thing that helps are the gasps of air between the tears.
Today is start of Cycle 3, week 3, day 1. Started out with an early appointment with Dr. Sarriera. 10 AM to be exact. So that meant leaving at 9. That meant me getting up and ready by 9. That meant an early day for me. Especially since my Kyprolis appointment wasn't until 12:30.
Got to the Cancer Center around 9:40. School traffic zones and normal back up of traffic at Lee Road and 17/92. Registered and only sat down about 5 minutes and was called back to Dr. Sarriera's room. Blood pressure (a little high on the second number), weight (OMG), bunches of questions. Then Abby came in to review my case. Had several questions for her to be discussed also with Dr. Sarriera before they came back together. Lab looked good for last two months. Will I be going another cycle? Why is my vitamin D so low? Will I every hear the word remission? What about my immunizations? No appointments for Kyprolis after this week? And of course, Desiree??
She answered a few. Probably will be another 3 cycles. Vitamin D (the Florida vitamin) should be in the range of 30 to 96, mine 19. Giving me a prescription 50,000 mg tablet to take once a week for 12 weeks and then to take a 5,000 mg over the counter tablet daily. Retest of vitamin D level in 3 months. No remission word yet. :( Will give me a partial response. Immunizations will be done probably in two to three weeks. My baby ones. Desiree is doing okay. Looks tired but happy. Babies are great. Bill and I miss her a lot. Abby listened to my heart and off to get Dr. Sarriera.
Not as much of a smile as the last time Dr. Sarriera came in to discuss my Myeloma. Shook hands with each of us and asked how I was feeling. Okay. Just my Friday, Saturday fatigue that gets worse as the cycles go on. Started with saying that my labs all look good except the light chain kappa/lambda ratio. It's on the low side. Mine 0.1575. Normal range - 0.2600-1.65. This low range means there is active Myeloma. Last months test registered 0.1618. Going down. Dr. Sarriera wants to continue with another 3 to 6 cycles (3 weeks on, 1 week off). Said there was never any chance at stopping after 3 cycles. He will reevaluate accordingly with labs, appointments with him and scans. During this time, he will order a Pet Scan before the end of the year. Oh, joy. Can you hear me freaking out already??? Also, discussed that I do not have any appointments for Kyprolis after tomorrow. Explained he does these appointments in blocks of time so will get me back on my schedule. Said he is more than likely going for 6 more cycles. Hello 2018. Talked mainly about the light chains. Once he is happy that my cycles have done their job, will work in a maintenance plan for me. Instructed Abby to get Pet Scan set up and immunizations scheduled. Appointment done. Little upset here. Holding back tears.
Down from 2 floor to pharmacy on 1st floor to order more Dex and Cytoxin for my Cycle 4.
Up to 5LP to see if anyway I could get in early. My appointment was at 12:30. Now 11. Registered for my for my lines and labs. Once they were completed, Bill and I went to lunch on the 4th floor. Then back up to 5LP around to wait for my 12:30 appointment. Never took us back to my room till 1. Then my bilirubin came back the highest it's been so far. 2.4. Had to contact Dr. Sarriera for instructions as which way to go. He was out on rounds. Finally got his instructions, Kyprolis ordered at pharmacy, sent up to room, drip started, done and on the way home around 3. I have to have labs done again Wednesday before my Kyprolis drip to check my bilirubin.
I talked with my oncology nurse, Stephanie, what I could do to help this? One thing she said was being on the meds I am on and not drinking enough water over a period of a few days may be part of the problem. Said you should drink in ounces 1/2 the amount of your weight. So I guess I need to lose weigh. Ha! That's another problem to be discussed at a later time.
Each time we go to the Cancer Center, I like to look at the street names. Minehaha, Swoope, Wigwam, Beach View, Thistle. Orange, Kyle, Packwood, Zelma, Marks, James, Madeleine, Hazel, Red Bug Lake, Pinesong. Some names of family and friends, some names that say Florida, some names that say Disney and some names that say home. I love Florida.
Quote:
Sometimes it hurts and the only thing that helps are the gasps of air between the tears.
Thursday, November 2, 2017
Weight Watchers.
Cycle 3, week 1, day 1 started on Tuesday, October 31. I was to have my labs drawn for the Multiple Myeloma tests to be done. Of course because of the mix up 3 weeks ago, there weren't any new orders written requesting the labs. This was to be taken care of but apparently got lost. These labs are to be done a week before my appointment with Dr. Sarriera as some of the tests take a bit longer than others. Since I know when I am to get what labs, I questioned my tech. He looked to see what and how many extra tubes to draw so this would happen for me. Thank you Nick. Once lines were in my port, labs drawn, we went in to my room to wait results from labs so they could mix my Kyprolis accordingly. Took a bit like always but finally results back. Nothing out of the ordinary. Bilirubin was high but down from last week. Pharmacy mixed my Kyprolis, plugged me in and soon done.
Day 2 stated out early for us. Had a mammogram appointment first. Then there was some time in between that appointment and my chemo drip. We were able to get in a bit early for the drip so we didn't have to sit around and wait. Had one of my favorite oncology nurses, Patrice. My blood pressure was measured at 146/102. What??? This was taken in the lab room when they where they put in the lines for my port. Usually about 112/58. Patrice took it again and it was 116/58. I think the first machine wasn't working, don't you? Got my Kyprolis without a real long wait.
Okay so all this time and I am waiting for lab results to be added to my portal. And we got them. GREAT news!!!! Just needs verified by Dr. Sarriera. My Para Protein is 0. My IFE Impression (serum) says no monoclonal bands detected. My IFE Impression (urine) says no significant protein. So this means, there isn't enough detectable Myeloma to measure. This is so what we want to hear. This is so what we need to hear. Can't wait for my appointment with Dr. Sarriera next Tuesday.
Today, Thursday, I had a CT scan for a pain that I have in my right side. I have had this pain for quite a while. Have had CT scans before while living in Chambersburg. They never find any thing. My family doctor ordered the scan. So we will see what or if they find anything this time.
On Tuesday, Oct 31 all the persons on LP5 (the floor where my chemo is administered), were wearing t-shirts with WW in glitter on the front of the shirt. Asked my tech, Nick, what it stood for. All I could think of was Weight Watchers. Duh. Wonder Woman!!!
Quote:
Cancer is an ugly disease but the beauty of your life after cancer is worth fighting for.
Cycle 3, week 1, day 1 started on Tuesday, October 31. I was to have my labs drawn for the Multiple Myeloma tests to be done. Of course because of the mix up 3 weeks ago, there weren't any new orders written requesting the labs. This was to be taken care of but apparently got lost. These labs are to be done a week before my appointment with Dr. Sarriera as some of the tests take a bit longer than others. Since I know when I am to get what labs, I questioned my tech. He looked to see what and how many extra tubes to draw so this would happen for me. Thank you Nick. Once lines were in my port, labs drawn, we went in to my room to wait results from labs so they could mix my Kyprolis accordingly. Took a bit like always but finally results back. Nothing out of the ordinary. Bilirubin was high but down from last week. Pharmacy mixed my Kyprolis, plugged me in and soon done.
Day 2 stated out early for us. Had a mammogram appointment first. Then there was some time in between that appointment and my chemo drip. We were able to get in a bit early for the drip so we didn't have to sit around and wait. Had one of my favorite oncology nurses, Patrice. My blood pressure was measured at 146/102. What??? This was taken in the lab room when they where they put in the lines for my port. Usually about 112/58. Patrice took it again and it was 116/58. I think the first machine wasn't working, don't you? Got my Kyprolis without a real long wait.
Okay so all this time and I am waiting for lab results to be added to my portal. And we got them. GREAT news!!!! Just needs verified by Dr. Sarriera. My Para Protein is 0. My IFE Impression (serum) says no monoclonal bands detected. My IFE Impression (urine) says no significant protein. So this means, there isn't enough detectable Myeloma to measure. This is so what we want to hear. This is so what we need to hear. Can't wait for my appointment with Dr. Sarriera next Tuesday.
Today, Thursday, I had a CT scan for a pain that I have in my right side. I have had this pain for quite a while. Have had CT scans before while living in Chambersburg. They never find any thing. My family doctor ordered the scan. So we will see what or if they find anything this time.
On Tuesday, Oct 31 all the persons on LP5 (the floor where my chemo is administered), were wearing t-shirts with WW in glitter on the front of the shirt. Asked my tech, Nick, what it stood for. All I could think of was Weight Watchers. Duh. Wonder Woman!!!
Quote:
Cancer is an ugly disease but the beauty of your life after cancer is worth fighting for.
Subscribe to:
Posts (Atom)