Pay it Forward
Cycle 3, day 1 was today. Got labs drawn, in my room around 9. Oncology nurse today was Stephanie. Have had her before. Of course, as often as I go, I do get the same ones. Room was a large private one. Like them. Bill can stretch out. Labs back. Bilirubin was high and platelets low. Lab need approval to continue from Dr. Sarriera. Stephanie informed us no Kyprolis today. Dr. Sarriera on vacation and Dr. Landa didn't feel comfortable giving the go ahead to lower the dosage of the Kyprolis. Darazalex was okay to infuse. Bill and I questioned the decision. I have had higher bilirubin (today 1.7) and lower platelets (today 88). We said this could be seen in my records. Still no change in the decision from Dr. Landa. So tomorrow, I still keep my regular appointment for Kyprolis but will have labs drawn to see if my numbers changed. First for that as far as the labs go. We will see. Bill is still not happy with the way my visit went today. Kyprolis tomorrow. Just not sure yet.
Got my pre meds around 10:00. Started the Darzalex around 10:30. Eyes went closed around 11. Woke up for the hourly vitals and back out. And the great news was that my highest blood pressure was only 129/64. Will keep monitoring it at least once a day.
Tomorrow my beautiful, sweet Juliana heads home. I think she is ready. I know her momma is ready. I will miss her. I miss all my grandkids that do not live in FL. I will still have my sweet, beautiful Sasha and Ellie here. They are available for Didi hugs!!
I got a pedicure and manicure last Friday. While getting the pedicure, I met a great mother and her daughter. Daughter was telling me that her 89 year old grandmother was moving in with her and her fiancé soon. They were looking for a home with a split floor plan. Had look at 12 houses the day before and had 7 more to look later that day. We talked about the cost of the homes skyrocketing in this area. I told her we finally found a home with the split floor plan because my mom was going to move in with us but didn't happen. Talked about a house they liked but had so much work to do on it. But they really like it. Going to put an offer on it after looking at these next 7. Will deal with the upgrades as they can. She then ask why my mom didn't move in with us. I told her and she sat there for about another 1/2 hour. She asked a lot of questions about Myeloma. Listened as I told her. Asked more questions and listened. They finally left. My nail tech, Thu (pronounced two), told me that my pedicure and manicure was paid by Jessica. I just started to cry. What a wonderful thing she did. Fortunately, as I left, she and her mom were walking out of a restaurant. I was able to give her a hug and thank her. And I promised her I would Pay it Forward. This is long but I needed to share and mostly need to remember this.
Quote:
Be faithful in small things because it is in them your strength lies.
Tuesday, July 24, 2018
Sunday, July 22, 2018
Juliana
Last treatment was July 10. We have been free from going to the Cancer Center, free from Darzalex and Kyprolis infusions and labs. Has been so nice. Still have to take the Dex. Had a few rough days after the July 10th Darzalex. Then I had days I was tired, have a mild headache but able to feel half way decent. Able to drive. Able to enjoy a game of "dimes" with Michelle and Gery. Able to go shopping. Able to get mom for a bit. Able to go to the grocery store by myself. Able to have a sleep over with my 3 granddaughters. Able to ignore or take a Tylenol for the headaches (mild compared to the others). Able to just feel decent. Able to get my blood pressure down. Able to be me.
Well, all this will end soon. I start my next rcycle of Darzalex this Tuesday, the 24th. I will also have my Kyprolis the 24th and the 25th. Filled in my calendar with my new schedule. It took me out till the middle of October. Darzalex ever other week and Kyprolis twice a week for 3 weeks and then off a week. So here we come Cancer Center, twice a week again.
Went to the airport to pick up Juliana on the 18th. She will be here until Wednesday the 25th. Dividing her time between here and Kristi's house. So glad that she was able to have some time to come visit. Sure wish I could have been able to take her to Disney. She really wanted to do that. Such a sweet granddaughter. Love her and my other grandkids so much.
Quote:
Cancer never takes a vacation.
Last treatment was July 10. We have been free from going to the Cancer Center, free from Darzalex and Kyprolis infusions and labs. Has been so nice. Still have to take the Dex. Had a few rough days after the July 10th Darzalex. Then I had days I was tired, have a mild headache but able to feel half way decent. Able to drive. Able to enjoy a game of "dimes" with Michelle and Gery. Able to go shopping. Able to get mom for a bit. Able to go to the grocery store by myself. Able to have a sleep over with my 3 granddaughters. Able to ignore or take a Tylenol for the headaches (mild compared to the others). Able to just feel decent. Able to get my blood pressure down. Able to be me.
Well, all this will end soon. I start my next rcycle of Darzalex this Tuesday, the 24th. I will also have my Kyprolis the 24th and the 25th. Filled in my calendar with my new schedule. It took me out till the middle of October. Darzalex ever other week and Kyprolis twice a week for 3 weeks and then off a week. So here we come Cancer Center, twice a week again.
Went to the airport to pick up Juliana on the 18th. She will be here until Wednesday the 25th. Dividing her time between here and Kristi's house. So glad that she was able to have some time to come visit. Sure wish I could have been able to take her to Disney. She really wanted to do that. Such a sweet granddaughter. Love her and my other grandkids so much.
Quote:
Cancer never takes a vacation.
Wednesday, July 11, 2018
Furs.
Yesterday, I had my last of the 8 weeks of Darzalex. Got at the Cancer Center around 8:20. Back to my room around 9:00 after accessing my port and drawing labs. Seemed to be running late. Chiara, my oncology nurse for the day was ready with my premeds. I told her that I usually do not get these until my labs come back. Need to see if all my numbers are okay to precede. And if I took them now, I would be out. We think she was new because several other nurses seemed to be "checking" on her. And I did not recognize that name. One that would be easy to remember. Labs came back okay. Bilirubin up some. Waited on Dr. Sarriera to approve to continue. Which he did. Started the Darzalex around 10:45. No Kyprolis this week. I was out about 11:15. Hourly vitals. All good. Until after the infusion was complete. Last blood pressure was super high for me 184/78. This all started around 4. At one point, the machine would inflate, deflate, inflate, deflate. Moved to other arm. Still high. Chiara would wait like 15 to 20 minutes, take again. Still very high. Not letting me go home. Headache starting. Chiara contacted the PA on duty several times for advice. Finally took pressure with a manual blood pressure cuff. Still high. Not going home. Decided to give me a Fioricet pill for the headache around 5. Waited until 5:30 for another reading. Redid with the manual cuff and was down to 147/74. Decided that I could go home but continue to take my pressure there. I did several time over the course of the night. Pressure was up at 11 so took another Fioricet. Down around 12:30. Finally fell asleep around 1ish.
Today was our appointment with Dr. Sarriera after my first 8 weeks of Darzalex. I thought I had off a week to start my every other week of the Darzalex. Nope, I am on my cycle 3 of Darzalex. They count 4 weeks as one cycle. Hence, cycle 3 to start July 17th. NOOO!!! Juliana to come in that day. Dr. Sarriera was very thoughtful of my needs to spend time with her and said I could take that week off and not start until July 24th. Juliana leaves on the 25th. Then Jakob and Audrey come July 27th for a week. I will not have a Darzalex treatment while they are here either. Worked out. I may have Kyprolis treatments but not sure yet. Thank you Dr. Sarriera.
Very concerning in today's appointment were my headaches and blood pressure. Dr. Sarriera had a fellowship intern with him today. They did some research on the net regarding headaches and the meds I am on. All of meds, of course, causes a certain percentage towards headaches. But even more concerning to them was my increasing blood pressure. Looked over past history and notice this seemed to be creeping up and up. Maybe the blood pressure that could be caused by the meds could be causing the headaches. So guess what, I am now adding a blood pressure pill to my regiment of meds. If this takes these headaches away, I will not complain. Of course I know that it may take time to achieve the intended effect. I have the Fioricet to fill in till then. Since these headaches seem to be mostly behind the eyes, Dr. Sarriera ordered a MRI to make sure there are not any Myeloma lytic lesions causing any other problems behind the eyes.
Other discussions. Our trip to Moffitt and how they are on the same page with Dr. Sarriera. Asked if there were other treatment plans if this Darazalex would not happen to work. He started to list off all these other drugs that could be used. His comment to me was that I have to be willing to keep an open mind. Told him it was hard at times; he understood. He is all for the Car_T trial if it opened up for me in the event of Darzalex failure. He felt my lab numbers looked good even though my M Spike that has been zero forever is elevated. Felt my light chains looked good. Darzalex causes some readings to be distorted. I will continue to take my Dex weekly even though I will not be having treatments. Bill was so happy about that. Next appointment to be with Abby on August 8th. Need to do Myeloma labs one week before. MRI is schedule for July 26th.
We pass this small store on the way to the Cancer Center that has had me baffled. The sign says "Cold Storage and Furs". So I am guessing since it doesn't get cold even here to wear a fur, that it is a place to visit so you can wear your fur?? This is Florida so could be.
Quote:
Everyday that I challenge this cancer and survive is a victory for me.
Yesterday, I had my last of the 8 weeks of Darzalex. Got at the Cancer Center around 8:20. Back to my room around 9:00 after accessing my port and drawing labs. Seemed to be running late. Chiara, my oncology nurse for the day was ready with my premeds. I told her that I usually do not get these until my labs come back. Need to see if all my numbers are okay to precede. And if I took them now, I would be out. We think she was new because several other nurses seemed to be "checking" on her. And I did not recognize that name. One that would be easy to remember. Labs came back okay. Bilirubin up some. Waited on Dr. Sarriera to approve to continue. Which he did. Started the Darzalex around 10:45. No Kyprolis this week. I was out about 11:15. Hourly vitals. All good. Until after the infusion was complete. Last blood pressure was super high for me 184/78. This all started around 4. At one point, the machine would inflate, deflate, inflate, deflate. Moved to other arm. Still high. Chiara would wait like 15 to 20 minutes, take again. Still very high. Not letting me go home. Headache starting. Chiara contacted the PA on duty several times for advice. Finally took pressure with a manual blood pressure cuff. Still high. Not going home. Decided to give me a Fioricet pill for the headache around 5. Waited until 5:30 for another reading. Redid with the manual cuff and was down to 147/74. Decided that I could go home but continue to take my pressure there. I did several time over the course of the night. Pressure was up at 11 so took another Fioricet. Down around 12:30. Finally fell asleep around 1ish.
Today was our appointment with Dr. Sarriera after my first 8 weeks of Darzalex. I thought I had off a week to start my every other week of the Darzalex. Nope, I am on my cycle 3 of Darzalex. They count 4 weeks as one cycle. Hence, cycle 3 to start July 17th. NOOO!!! Juliana to come in that day. Dr. Sarriera was very thoughtful of my needs to spend time with her and said I could take that week off and not start until July 24th. Juliana leaves on the 25th. Then Jakob and Audrey come July 27th for a week. I will not have a Darzalex treatment while they are here either. Worked out. I may have Kyprolis treatments but not sure yet. Thank you Dr. Sarriera.
Very concerning in today's appointment were my headaches and blood pressure. Dr. Sarriera had a fellowship intern with him today. They did some research on the net regarding headaches and the meds I am on. All of meds, of course, causes a certain percentage towards headaches. But even more concerning to them was my increasing blood pressure. Looked over past history and notice this seemed to be creeping up and up. Maybe the blood pressure that could be caused by the meds could be causing the headaches. So guess what, I am now adding a blood pressure pill to my regiment of meds. If this takes these headaches away, I will not complain. Of course I know that it may take time to achieve the intended effect. I have the Fioricet to fill in till then. Since these headaches seem to be mostly behind the eyes, Dr. Sarriera ordered a MRI to make sure there are not any Myeloma lytic lesions causing any other problems behind the eyes.
Other discussions. Our trip to Moffitt and how they are on the same page with Dr. Sarriera. Asked if there were other treatment plans if this Darazalex would not happen to work. He started to list off all these other drugs that could be used. His comment to me was that I have to be willing to keep an open mind. Told him it was hard at times; he understood. He is all for the Car_T trial if it opened up for me in the event of Darzalex failure. He felt my lab numbers looked good even though my M Spike that has been zero forever is elevated. Felt my light chains looked good. Darzalex causes some readings to be distorted. I will continue to take my Dex weekly even though I will not be having treatments. Bill was so happy about that. Next appointment to be with Abby on August 8th. Need to do Myeloma labs one week before. MRI is schedule for July 26th.
We pass this small store on the way to the Cancer Center that has had me baffled. The sign says "Cold Storage and Furs". So I am guessing since it doesn't get cold even here to wear a fur, that it is a place to visit so you can wear your fur?? This is Florida so could be.
Quote:
Everyday that I challenge this cancer and survive is a victory for me.
Sunday, July 8, 2018
Dandelions.
Tuesday the 3rd was treatment number 7 of Darzlex. Kristi was my support person for this long day. So glad she was able to go with me. We got there around 8:15. Was taken back to my room around 8:30 to get the day started. Kristi and I had a chance to just sit and talk for a bit. What about, don't remember but was great. Then the pre meds started, the Kyprolis was infused and after 15 minutes, the Darzalex was started. That was 10:30. Within about 20 minutes, I was out only to wake up for my hourly vitals. Kristi was able to relax, read and do whatever she had in her bag to do. And most of all, watch me sleep. Ha! Slept until about 1 hour before my Darzalex was finished. We had a little bit of excitement. Nurses came flying in looking at the patients in the room. 3 of us. Emergency light flashing in the ceiling. Finally figured out the one patient had pulled his tube out accidentally.
Having Kristi in the room made me think of all the nights I watched her till she went to sleep when she was a baby (years ago). Only to try to walk out of the room and she would wake up crying and I had to start all over again. Sorry Kristi, just had to tell.
Two years ago today I was officially told that I had Multiple Myeloma. And two years today, I am still fighting. Two years ago on the 29th, I was told by my family doctor (no longer my doctor) to get my affairs in order and call Hospice. And two years today, I am still fighting. New treatments, new drugs. And two years today, I am still fighting.
My treatment Tuesday did not go without the headaches and fatigue. Thursday, so tired. Mild headache. Friday, headache that's excruciating into the night. Nothing helps. Saturday, same till about 4 and then it started to calm some. Sunday, mild headache but felt okay. Monday will probably be a decent day only to start over again on Tuesday. And two years today, I am still fighting.
Tuesday's Darzalex treatment will be the 8th one. The last weekly one in the first segment of this plan. I should be going to every other week then for 16 weeks. I see Dr. Sarriera on Wednesday to get the next segment going. He will probably be ordering a pet scan, a MRI etc to see what this drug has done to the mass. Anxious to see what is happening because of the treatment of Darzalex.
Driving to the Cancer Center the other day I noticed yellow flowers mixed in with some greens in the median of the road. Got me thinking. I have never seen any dandelions since I have been in Florida. Nancy, I am sure you would like that. Lots of weeds though, lots of weeds.
Quote:
I just want to wake up and feel like I can win this battle. I haven't given up yet and I don't plan to anytime soon.
Tuesday the 3rd was treatment number 7 of Darzlex. Kristi was my support person for this long day. So glad she was able to go with me. We got there around 8:15. Was taken back to my room around 8:30 to get the day started. Kristi and I had a chance to just sit and talk for a bit. What about, don't remember but was great. Then the pre meds started, the Kyprolis was infused and after 15 minutes, the Darzalex was started. That was 10:30. Within about 20 minutes, I was out only to wake up for my hourly vitals. Kristi was able to relax, read and do whatever she had in her bag to do. And most of all, watch me sleep. Ha! Slept until about 1 hour before my Darzalex was finished. We had a little bit of excitement. Nurses came flying in looking at the patients in the room. 3 of us. Emergency light flashing in the ceiling. Finally figured out the one patient had pulled his tube out accidentally.
Having Kristi in the room made me think of all the nights I watched her till she went to sleep when she was a baby (years ago). Only to try to walk out of the room and she would wake up crying and I had to start all over again. Sorry Kristi, just had to tell.
Two years ago today I was officially told that I had Multiple Myeloma. And two years today, I am still fighting. Two years ago on the 29th, I was told by my family doctor (no longer my doctor) to get my affairs in order and call Hospice. And two years today, I am still fighting. New treatments, new drugs. And two years today, I am still fighting.
My treatment Tuesday did not go without the headaches and fatigue. Thursday, so tired. Mild headache. Friday, headache that's excruciating into the night. Nothing helps. Saturday, same till about 4 and then it started to calm some. Sunday, mild headache but felt okay. Monday will probably be a decent day only to start over again on Tuesday. And two years today, I am still fighting.
Tuesday's Darzalex treatment will be the 8th one. The last weekly one in the first segment of this plan. I should be going to every other week then for 16 weeks. I see Dr. Sarriera on Wednesday to get the next segment going. He will probably be ordering a pet scan, a MRI etc to see what this drug has done to the mass. Anxious to see what is happening because of the treatment of Darzalex.
Driving to the Cancer Center the other day I noticed yellow flowers mixed in with some greens in the median of the road. Got me thinking. I have never seen any dandelions since I have been in Florida. Nancy, I am sure you would like that. Lots of weeds though, lots of weeds.
Quote:
I just want to wake up and feel like I can win this battle. I haven't given up yet and I don't plan to anytime soon.
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