No IV.
Today was my 2nd day for Darzalex. It wasn't a 15 hour day! But it was a ten hour day. 8:30 till after 6:30. Got to the Cancer Center around 8:15. Took me to the draw station. They access my port and drew labs. Normal ones I get weekly and a Myeloma panel for my appointment with
Dr. Sarriera next week. Once done, retrieved Bill from the waiting room and went to Pod 1. My nurse today was Kerrie. I have had her before but was just on one my shorter days. Those days we thought were not going to end but were done in 2, 3 4 or 5 hours. Kerrie had me and other patients to take care of. They were trying to get 5 days of infusions done in 4 days. Over 100 patients just today.
Waited on labs and my platelets were pretty low. All other labs good except my Bilirubin. We know way that is so. Since my platelets (a component of blood that is to react to bleeding by clumping/clotting) we're low, Kerrie had to notify Dr. Sarriera to see if he wanted me to continue on with the treatment. In the meantime, I took my 40 mg of Dex (steroids). Dr. Sarriera gave the go ahead to continue on with treatment. Premeds were given. Tylenol and Benadryl orally. 20 more mg of Dex via a 10 minute drip. Once that was done, Kerrie started the 15 minute bag of Kyprolis. All ready now for the Darzalex. Started the bag at 25 ml around 11. No reactions. After an hour, up it to
50 ml. No reactions. Then to 100 for another hour. No reactions. 150 for an hour. No reactions. Then to 200 till the bag was empty. No reactions. Finally finished around 6:37. I slept through a lot of the hour timings because of the Benadryl. Kerrie had to take my vitals on the hour so that always woke me up. Flush of my port. Heparin and saline. Removed the lines. Out of there a bit before 7. Kerrie was another caring oncology nurse. Very concerned for me and the other patients she had throughout the day. Greeted each of them with an endearment making them feel welcome. Bill and I watched several come and go.
Now I am hoping there will be no side effects caused by the infusion of the Darzalex. I know the Dex will cause a rash on my face and chest, mainly on the left side. Also, the Dex with cause insomnia. And I know the Kyprolis and the Darzalex with cause fatigue. These things are symptoms that I can deal with even though I hate them. No more please!
There are rocker type chairs in the pods for the caregivers. Bill because of his arthritis in his back can only set in them for so long. He got up and took walks several times. Finally, after I was the only patient Kerrie had left, Bill asked if he could sit in one of the lounger chairs I use. Of course he could. He did tell her that he didn't want an IV of anything. Long day for Bill but he is always there for me watching that things are going as they should be. Questioning things if necessary. Kerrie remarked that she thought that was a great thing. Concern. Couldn't handle this journey without him!
Quote:
It's not about bravery, it is what I need to do to win this battle over cancer.
Tuesday, May 29, 2018
Wednesday, May 23, 2018
Dogs
Got to 8LP around 8. Met by a caring tech who took us right to the room. Room 828. More 8's. She got me settled in bed then did vitals. Got us blankets. So cold in the room. Got me an Orlando Health cup of water. Bill and I looked around the room. Had a regular chair, a lounge chair, refrigerator, closets, drawers, shelfs for personal things, TV (never turned it on), a bed for me and a pull out bed in the way for overnight quests. Regular hospital room ready for patients that need to stay. Very nice.
Kristy, my first nurse, accessed my port with lines and drew blood to go to the lab. She explained a bit about what was going to happen throughout the day. Labs take longer because they are processed by the lab that does all the hospitals (ORMC). When we are on 5LP, they have their on lab and pharmacy. 5LP pharmacy does 8LP's labs When she left, I did nap a bit. Not long though.
Melinda was my stay all day nurse. Labs were back at 11. All looked good. We are ready to roll. Melinda gave me the premed drugs to help with side effects. Benadryl, Singular, Tylenol around 12. Started my Benedryl. This was administer as a drug. 30 minutes later she gave me my Kyprolis drip. Once that was done and all the flushing of my ports done, she started the Darzalex. This was a drip of 50 ml. Within 15 minutes of the drip, the side effects hit me, flushed, hot, headache that felt like someone was using a hammer to pound on it, legs achy and got sick 3 times. Details, I know but this is my blog to help me remember. Also, will help someone else someday, somewhere who may get this ugly disease. Melinda stopped the drip right away, contacted Dr. Sarriera and he issued another type of steroid. Waited a bit and started it again at 50 ml. She asked how I felt about increasing it to 100 ml. I was scared and said would rather keep it at 50. That would take 38 hours to finish. That is when we discussed staying over night. She contacted Dr. Sarriera again and he said to increase. Which Melinda did. I then turned it over to God and prayed it would be okay. AND it was. Lots of prayers and positive energy also was being sent from family and friends. Thank you.
New nurse came in at the 7 PM shift. Katherine. Again, a very caring nurse. Katherine were able to increase to 150 ml. Each increase was run for 1 hour with vitals every 15 minutes. Increased to 200 ml. Yes. Ran for 1 hour and all was good. Then they brought in another bag of the 200 ml that took about 2 1/2 more hours. Needed to make sure I could tolerate the 200 ml for a longer period of time. Was okay again. Finally done around 10:30. Waited another 15 minutes just to be sure.
Both Melinda and Katherine never once left my room. It the needed someone to reviewing check my meds, they called some on the phone to come there. Melinda's dinner break included in the calls. They were constantly asking me if I was okay? Did I need any thing? And, as mentioned before, taking vitals. Katherine was my Uber driver with the wheel chair.
We finally left the hospital around 11. Home now and I need to go to bed but had two dozes of steroids. Remember how they keep me up?
One of the charge nurse, forget her name, saw a picture of Chai that I have for my iPad screen saver. Katherine told me that this I forgot her name, had cats and dogs which open lots of talk. She has 5 cats (just had to put one done), 5 dogs. Most of the dogs were either from a neighbors that didn't want it any more or some her daughter found wandering and no one claimed as their and were not microchipped. The one she inherited had several scars on it from someone burning him. They had him about 17 years and had to put him down too. This dog's name was Ringo Scar. Don't you just love it?
Quote:
Give all cancer fighters the strength to fight and to never give up. Amen.
Got to 8LP around 8. Met by a caring tech who took us right to the room. Room 828. More 8's. She got me settled in bed then did vitals. Got us blankets. So cold in the room. Got me an Orlando Health cup of water. Bill and I looked around the room. Had a regular chair, a lounge chair, refrigerator, closets, drawers, shelfs for personal things, TV (never turned it on), a bed for me and a pull out bed in the way for overnight quests. Regular hospital room ready for patients that need to stay. Very nice.
Kristy, my first nurse, accessed my port with lines and drew blood to go to the lab. She explained a bit about what was going to happen throughout the day. Labs take longer because they are processed by the lab that does all the hospitals (ORMC). When we are on 5LP, they have their on lab and pharmacy. 5LP pharmacy does 8LP's labs When she left, I did nap a bit. Not long though.
Melinda was my stay all day nurse. Labs were back at 11. All looked good. We are ready to roll. Melinda gave me the premed drugs to help with side effects. Benadryl, Singular, Tylenol around 12. Started my Benedryl. This was administer as a drug. 30 minutes later she gave me my Kyprolis drip. Once that was done and all the flushing of my ports done, she started the Darzalex. This was a drip of 50 ml. Within 15 minutes of the drip, the side effects hit me, flushed, hot, headache that felt like someone was using a hammer to pound on it, legs achy and got sick 3 times. Details, I know but this is my blog to help me remember. Also, will help someone else someday, somewhere who may get this ugly disease. Melinda stopped the drip right away, contacted Dr. Sarriera and he issued another type of steroid. Waited a bit and started it again at 50 ml. She asked how I felt about increasing it to 100 ml. I was scared and said would rather keep it at 50. That would take 38 hours to finish. That is when we discussed staying over night. She contacted Dr. Sarriera again and he said to increase. Which Melinda did. I then turned it over to God and prayed it would be okay. AND it was. Lots of prayers and positive energy also was being sent from family and friends. Thank you.
New nurse came in at the 7 PM shift. Katherine. Again, a very caring nurse. Katherine were able to increase to 150 ml. Each increase was run for 1 hour with vitals every 15 minutes. Increased to 200 ml. Yes. Ran for 1 hour and all was good. Then they brought in another bag of the 200 ml that took about 2 1/2 more hours. Needed to make sure I could tolerate the 200 ml for a longer period of time. Was okay again. Finally done around 10:30. Waited another 15 minutes just to be sure.
Both Melinda and Katherine never once left my room. It the needed someone to reviewing check my meds, they called some on the phone to come there. Melinda's dinner break included in the calls. They were constantly asking me if I was okay? Did I need any thing? And, as mentioned before, taking vitals. Katherine was my Uber driver with the wheel chair.
We finally left the hospital around 11. Home now and I need to go to bed but had two dozes of steroids. Remember how they keep me up?
One of the charge nurse, forget her name, saw a picture of Chai that I have for my iPad screen saver. Katherine told me that this I forgot her name, had cats and dogs which open lots of talk. She has 5 cats (just had to put one done), 5 dogs. Most of the dogs were either from a neighbors that didn't want it any more or some her daughter found wandering and no one claimed as their and were not microchipped. The one she inherited had several scars on it from someone burning him. They had him about 17 years and had to put him down too. This dog's name was Ringo Scar. Don't you just love it?
Quote:
Give all cancer fighters the strength to fight and to never give up. Amen.
Tuesday, May 22, 2018
8
Well, things have finally settled with my insurance company. I will be starting my new treatment tomorrow. Doesn't it seem there are lots of treatments out there? Doesn't it seem I have been on a lot of these treatments? Doesn't it seem there should be a treatment that works for a long period of time for me? Doesn't it seem??? Maybe this will be the one. I have said and heard that for so many of the treatments. But maybe this one will be the one!!!!
My treatments should go as such. Tomorrow is the first one of Darzalex. Not sure if I will be getting Kyprolis or if I should take my Dex. Will ask the nurse in the morning when we get there. Then my treatments will be on Tuesday and Wednesday. Like the old days. The Darzalex will be every Tuesday for 7 more weeks. Then it's to be every other Tuesday for another several weeks. Then once a month for ???. Kyprolis will be Tuesday and Wednesday for 3 weeks and off one week. This will be for ???. Dex once a week for ???. Pet scan to be done again in 2 months. See Dr. Sarriera June 8th. I think I will be a little busy for a few months.
I have to be at the Cancer Center hospital at 8 for an 8 hour infusion on floor 8. So if you can, play 888 on the lottery tomorrow for me please. Will try to let you all know how it went, if I can, once we are home.
Quote:
Every day you challenge cancer and survive is a victory for you.
Well, things have finally settled with my insurance company. I will be starting my new treatment tomorrow. Doesn't it seem there are lots of treatments out there? Doesn't it seem I have been on a lot of these treatments? Doesn't it seem there should be a treatment that works for a long period of time for me? Doesn't it seem??? Maybe this will be the one. I have said and heard that for so many of the treatments. But maybe this one will be the one!!!!
My treatments should go as such. Tomorrow is the first one of Darzalex. Not sure if I will be getting Kyprolis or if I should take my Dex. Will ask the nurse in the morning when we get there. Then my treatments will be on Tuesday and Wednesday. Like the old days. The Darzalex will be every Tuesday for 7 more weeks. Then it's to be every other Tuesday for another several weeks. Then once a month for ???. Kyprolis will be Tuesday and Wednesday for 3 weeks and off one week. This will be for ???. Dex once a week for ???. Pet scan to be done again in 2 months. See Dr. Sarriera June 8th. I think I will be a little busy for a few months.
I have to be at the Cancer Center hospital at 8 for an 8 hour infusion on floor 8. So if you can, play 888 on the lottery tomorrow for me please. Will try to let you all know how it went, if I can, once we are home.
Quote:
Every day you challenge cancer and survive is a victory for you.
Monday, May 21, 2018
Arlene.
Will not be starting my 8 hour treatment of Darzalex until Wednesday as of now. My insurance company needs to have a "peer to peer" conversation with Dr. Sarriera or Abby and they are both off today. Poor Desiree got to listen to me calling and emailing to get this straightened out. Just wanted to know why I wasn't hearing from "Roy" the person that was handling my insurance at the Cancer Center, the 8th floor of the Cancer Center hospital with instructions, Champa with my additional appointments. Just wanted to know. I am scared about this appointment anyway. Didn't need additional stress. So now I get to worry another day. Wait, me worry? To be continued.
A little about Darzalex. It is a relatively new medication to treat Myeloma. It is a monoclonal antibody. This is an artificially manufactured antibody that is made in a laboratory rather than in the human body. Designed to find and bind to cancer cells and/or immune system cells for treatment purposes. These laboratory made antibodies target the single protein (CD38) on the surface of Myeloma cancer cells. The Darzalex attacks and kills the myeloma cells. There are side effects just like most other drugs.
I have mentioned in the past that Ken's (founder of our myeloma support group) second in command is Arlene. Today I got a call from her just checking on me. We missed the last meeting. This is one of the reason I love this group. A caring group that I am glad we are a part of. My myeloma support group!!!
Quote:
The breath that you just took - that's a gift.
Will not be starting my 8 hour treatment of Darzalex until Wednesday as of now. My insurance company needs to have a "peer to peer" conversation with Dr. Sarriera or Abby and they are both off today. Poor Desiree got to listen to me calling and emailing to get this straightened out. Just wanted to know why I wasn't hearing from "Roy" the person that was handling my insurance at the Cancer Center, the 8th floor of the Cancer Center hospital with instructions, Champa with my additional appointments. Just wanted to know. I am scared about this appointment anyway. Didn't need additional stress. So now I get to worry another day. Wait, me worry? To be continued.
A little about Darzalex. It is a relatively new medication to treat Myeloma. It is a monoclonal antibody. This is an artificially manufactured antibody that is made in a laboratory rather than in the human body. Designed to find and bind to cancer cells and/or immune system cells for treatment purposes. These laboratory made antibodies target the single protein (CD38) on the surface of Myeloma cancer cells. The Darzalex attacks and kills the myeloma cells. There are side effects just like most other drugs.
I have mentioned in the past that Ken's (founder of our myeloma support group) second in command is Arlene. Today I got a call from her just checking on me. We missed the last meeting. This is one of the reason I love this group. A caring group that I am glad we are a part of. My myeloma support group!!!
Quote:
The breath that you just took - that's a gift.
Thursday, May 17, 2018
Champa
Not sure if I will be starting the new drug Darzalex next Tuesday. I received my schedule for the following Tuesday and my Kyprolis was not scheduled along with the Darzalex. Plus the Darzalex was only scheduled for 6 weeks. I emailed Desiree for the phone number of the schedulers to see why. Call my scheduler (more about her later) to see why it wasn't scheduled. She explained to me there was a hold on my treatment. Once treatment orders are sent to the schedulers there is a nurse manager/reviewer that reviews the treatment drugs. Seems that Darzalex along with Kyprolis is not a combination of chemo meds that are FDA approved for Multiple Myeloma. Darzalex along with Velcade or Revlimid has been approved. Velcade caused my neuropathy and I am allegoric to Revlimid. This finding has been sent back to Dr. Sarriera. From what I understand, the ball is in his pocket. I haven't heard anything yet. This hasn't even been sent to my insurance company for approval either.
My scheduler also explained why she made appointments for my infusion. She wanted to make sure I had chair time. She had me scheduled for 8:30 AM every Tuesday for the next several weeks. Because of the way this drug is administered, early morning appointments are necessary. This infusion of Darzalex may take more than 4 to 5 hours. Won't know until I do the first one in the hospital on the 8th floor. Kyprolis wasn't showing on the schedule because she stopped due to the reviewers findings. What a mess!
Meanwhile, I have been enjoying being off chemo for over 2 weeks now. I do know that I can feel some reaction of coming down off the drugs. But I do have a little more energy, more pep to my step. :) Did some furniture store shopping with Kristi yesterday. Then had lunch. Been awhile since we have done that. Was nice. Wish Kerri was here to go with us.
We missed our support group meeting on Monday. I hate when that happens. Was doing a 24 hour collection. I enjoy those meetings so much. Found out that Benn did a surprise visit for a bit. That made me even more sad that I missed it.
My scheduler's name is Champa. She has worked with me since day one. Knows I hate early morning appointments. Always schedules me for the 12:30 or later appointments. Has several times, if she would have to call me for some reason, taken the time to talk with me to see how I am doing. Yesterday when I called, I asked her if she had a few minutes to talk. Champa responded that for me she would take the time and she immediately asked me how I was feeling. We talked a bit about me and then I asked about my schedule. She explained what was going on, as explained above. Then I teased her about the 8:30 AM appointments. We laughed about them. I truly need to find out where her office is and go meet Champa. Yet another employee of my Cancer Center that has help make my journey a bit easier.
Quote:
Sometimes when I say I'm doing okay, I want someone to look me in the eyes, hug me tight and say "I know you're not".
Not sure if I will be starting the new drug Darzalex next Tuesday. I received my schedule for the following Tuesday and my Kyprolis was not scheduled along with the Darzalex. Plus the Darzalex was only scheduled for 6 weeks. I emailed Desiree for the phone number of the schedulers to see why. Call my scheduler (more about her later) to see why it wasn't scheduled. She explained to me there was a hold on my treatment. Once treatment orders are sent to the schedulers there is a nurse manager/reviewer that reviews the treatment drugs. Seems that Darzalex along with Kyprolis is not a combination of chemo meds that are FDA approved for Multiple Myeloma. Darzalex along with Velcade or Revlimid has been approved. Velcade caused my neuropathy and I am allegoric to Revlimid. This finding has been sent back to Dr. Sarriera. From what I understand, the ball is in his pocket. I haven't heard anything yet. This hasn't even been sent to my insurance company for approval either.
My scheduler also explained why she made appointments for my infusion. She wanted to make sure I had chair time. She had me scheduled for 8:30 AM every Tuesday for the next several weeks. Because of the way this drug is administered, early morning appointments are necessary. This infusion of Darzalex may take more than 4 to 5 hours. Won't know until I do the first one in the hospital on the 8th floor. Kyprolis wasn't showing on the schedule because she stopped due to the reviewers findings. What a mess!
Meanwhile, I have been enjoying being off chemo for over 2 weeks now. I do know that I can feel some reaction of coming down off the drugs. But I do have a little more energy, more pep to my step. :) Did some furniture store shopping with Kristi yesterday. Then had lunch. Been awhile since we have done that. Was nice. Wish Kerri was here to go with us.
We missed our support group meeting on Monday. I hate when that happens. Was doing a 24 hour collection. I enjoy those meetings so much. Found out that Benn did a surprise visit for a bit. That made me even more sad that I missed it.
My scheduler's name is Champa. She has worked with me since day one. Knows I hate early morning appointments. Always schedules me for the 12:30 or later appointments. Has several times, if she would have to call me for some reason, taken the time to talk with me to see how I am doing. Yesterday when I called, I asked her if she had a few minutes to talk. Champa responded that for me she would take the time and she immediately asked me how I was feeling. We talked a bit about me and then I asked about my schedule. She explained what was going on, as explained above. Then I teased her about the 8:30 AM appointments. We laughed about them. I truly need to find out where her office is and go meet Champa. Yet another employee of my Cancer Center that has help make my journey a bit easier.
Quote:
Sometimes when I say I'm doing okay, I want someone to look me in the eyes, hug me tight and say "I know you're not".
Sunday, May 13, 2018
Floor 8.
Friday the 11th was my appointment with Dr. Sarriera to hear my results from my biopsy. Bill and I already knew what we were about to hear especially since he rescheduled my appointment from the 15th to the 11th. I was called back to his office even before I was finished signing in. Nurse did all my vitals, asked a few questions and left saying Dr Sarriera will be with us soon.
We waited about 15 minutes (a long 15 minutes) till he finally walked in to the room. Greeted us with a hand shake. Did a quick exam on me, eyes, mouth, breathing etc. Then he proceeded to explain the results of the biopsy. The biopsy was taken from left paraspinal mass of the thoracic spine at T9-10 level. In our words, tissue was taken from a mass found left of my thoracic spine. The results - Myeloma. Just as we expected.
Dr. Sarriera mentioned the different combination of drugs that we could try. Once again, several of the combinations included either Revimid, Pomalist and Velcade. First two I am allergic to and the last one caused my neuropathy. Then he mentioned Daratumumab (Darzalex) along with Kyprolis and Dex (my steroids - poor Bill). This treatment plan has two drugs I have taken (Dex) or I am taking now (Kyprolis). So this is the treatment plan we all agreed upon. Here is how it goes:
My first treatment of the Darzalex (this is a drip) will start on May 22. I will be hospitalized for this one to monitor me for any side effects. Hives, rash, itching, difficultly breathing, slow uneven heart beat, dizziness, nausea, bone pain to name a few. This procedure will take about 8 hours. I then have this Darzalex infusion every Tuesday (day 1) for 8 weeks and then every other week for however long. This will take approximately 3 to 4 hours. Along with the Darzalex, I will still receive my Kyrpolis infusion. This drip will now be given on 2 days instead of one. Day 1 and day 2 and Dex will be taken one of those days. The Kyprolis and the Dex will be taken for 3 weeks on and one week off.
We talked about clinical trails and a second opinion. My Cancer Center here only has one trail right now and I don't qualify. I have an appointment for June 18th at Moffitt in Tampa. I will be seeing Dr. Ocoha, my transplant doctor for a second opinion.
I will see Dr. Sarriera in four weeks after the new treatment plan has started. He will schedule another Pet Scan in 4 months. Hug for me as the tears flowed saying we will get this.
So there we have it. Another relapse. Another area infected with Myeloma. Another treatment plan. Another day added to my infusion schedule. Another months of worries. Another Pet Scan. Another reason to cry. Another reason to pray.
Bill and I have been on the first 5 floors in my Cancer Center with the exception of the 3rd floor. There isn't a 3rd floor. We now will be adding another one. Floor 8. This is where I will be hospitalized for the Darzalex infusion my first time.
Quote:
Once cancer happens, it changes the way you live the rest of your life.
Friday the 11th was my appointment with Dr. Sarriera to hear my results from my biopsy. Bill and I already knew what we were about to hear especially since he rescheduled my appointment from the 15th to the 11th. I was called back to his office even before I was finished signing in. Nurse did all my vitals, asked a few questions and left saying Dr Sarriera will be with us soon.
We waited about 15 minutes (a long 15 minutes) till he finally walked in to the room. Greeted us with a hand shake. Did a quick exam on me, eyes, mouth, breathing etc. Then he proceeded to explain the results of the biopsy. The biopsy was taken from left paraspinal mass of the thoracic spine at T9-10 level. In our words, tissue was taken from a mass found left of my thoracic spine. The results - Myeloma. Just as we expected.
Dr. Sarriera mentioned the different combination of drugs that we could try. Once again, several of the combinations included either Revimid, Pomalist and Velcade. First two I am allergic to and the last one caused my neuropathy. Then he mentioned Daratumumab (Darzalex) along with Kyprolis and Dex (my steroids - poor Bill). This treatment plan has two drugs I have taken (Dex) or I am taking now (Kyprolis). So this is the treatment plan we all agreed upon. Here is how it goes:
My first treatment of the Darzalex (this is a drip) will start on May 22. I will be hospitalized for this one to monitor me for any side effects. Hives, rash, itching, difficultly breathing, slow uneven heart beat, dizziness, nausea, bone pain to name a few. This procedure will take about 8 hours. I then have this Darzalex infusion every Tuesday (day 1) for 8 weeks and then every other week for however long. This will take approximately 3 to 4 hours. Along with the Darzalex, I will still receive my Kyrpolis infusion. This drip will now be given on 2 days instead of one. Day 1 and day 2 and Dex will be taken one of those days. The Kyprolis and the Dex will be taken for 3 weeks on and one week off.
We talked about clinical trails and a second opinion. My Cancer Center here only has one trail right now and I don't qualify. I have an appointment for June 18th at Moffitt in Tampa. I will be seeing Dr. Ocoha, my transplant doctor for a second opinion.
I will see Dr. Sarriera in four weeks after the new treatment plan has started. He will schedule another Pet Scan in 4 months. Hug for me as the tears flowed saying we will get this.
So there we have it. Another relapse. Another area infected with Myeloma. Another treatment plan. Another day added to my infusion schedule. Another months of worries. Another Pet Scan. Another reason to cry. Another reason to pray.
Bill and I have been on the first 5 floors in my Cancer Center with the exception of the 3rd floor. There isn't a 3rd floor. We now will be adding another one. Floor 8. This is where I will be hospitalized for the Darzalex infusion my first time.
Quote:
Once cancer happens, it changes the way you live the rest of your life.
Tuesday, May 8, 2018
Boy oh boy!
Got to the hospital (ORMC) around 7:30 on Thursday the 3rd for my biopsy. Got checked in and was sent to the waiting room. Wasn't in there very long and a nurse came and got me. Told Bill to wait and once they prepped me, they would bring him back to the "surgery" holding area. Was given a gown to put on, hooked up to a blood pressure machine, all vitals taken, then a nurse came in to access my port. Talked to a PA that assists my surgeon (Dr. Sagar) regarding things that could happen but don't usually during surgery. Finally Bill was able to come back with me. That was a good thing because they explained to me that I would be in a Cat Scan machine during the procedure. Anxiety hit big time. Bill asked if they could give me something to take the edge off which they did. My scheduled surgery was for 10 AM. Still was waiting at 10:45 and anxiety med was wearing off. Bill left to get a sandwich as we missed breakfast. Finally the nurse that was to also assist Dr. Sagar came and said it was time to go. It was almost 11.
I rolled off one bed onto another bed that was attached to the CT machine. Please knock me out! Since the area to be biopsied was on my back, I had to lay on my stomach with my arms in the Superman position. Nurse told me the procedure would be done while the CT machine was taking pictures of the area. In other words, live. Dr. Sagar would be making an incision with a needle and cutting three pieces of the mass area. Needed to be somewhat awake in case he needed me to move. I am here to say that I felt each snip. First two hurt but the last one made me scream. Then I don't remember anything until I woke up in the recovery room.
The pain was horrible. Need something for pain please. And could Bill come back. Couldn't give me too much because they needed to see if the pain was caused by my breathing. Since the area that needed biopsied was near the lungs, there was a possibility (but not likely) he could accidentally snip the lung. Thus, collapsed lung. Once they established this was not the cause of my pain, they administered some additional pain meds. Yippee. Bill was able to come back then. Got something to drink and crackers to eat. They read my home instructions, got dressed, called for my Uber driver (wheelchair) and sent me home. Once home, I slept the rest of the afternoon.
Dr. Sarriera made an appointment to see me May 15th unless he had the results back sooner. Well, today I got an email from Desiree that Dr. Sarriera wants to see us this Friday, May 11th. Not feeling so good about this. He will usually tell me via email if things look good. Bill and I figure that he wants to get started on another treatment plan. A stronger treatment plan. I hope we are wrong but, oh well, won't say anymore.
Cheri, Matt, Connie and Madeleine came on Friday for a 5 day visit. I was so excited to meet my great niece Madeleine. She is now 16 month old. What a cutie. And, of course, very smart. One thing that came to my mind was how my step mother, Peg, would get my girls or my sister's kids to eat. When they would take a bite of food, she would shake her head and said, "Boy oh boy that's good"! Well, till they left today, I had Madeleine doing that with me. Matt actually said he remembered that. And I also used to do that with my grandkids. Memories. Miss them so much already.
Quote:
The experienced mountain climber is not intimidated by a mountain, he is inspired by it.
Got to the hospital (ORMC) around 7:30 on Thursday the 3rd for my biopsy. Got checked in and was sent to the waiting room. Wasn't in there very long and a nurse came and got me. Told Bill to wait and once they prepped me, they would bring him back to the "surgery" holding area. Was given a gown to put on, hooked up to a blood pressure machine, all vitals taken, then a nurse came in to access my port. Talked to a PA that assists my surgeon (Dr. Sagar) regarding things that could happen but don't usually during surgery. Finally Bill was able to come back with me. That was a good thing because they explained to me that I would be in a Cat Scan machine during the procedure. Anxiety hit big time. Bill asked if they could give me something to take the edge off which they did. My scheduled surgery was for 10 AM. Still was waiting at 10:45 and anxiety med was wearing off. Bill left to get a sandwich as we missed breakfast. Finally the nurse that was to also assist Dr. Sagar came and said it was time to go. It was almost 11.
I rolled off one bed onto another bed that was attached to the CT machine. Please knock me out! Since the area to be biopsied was on my back, I had to lay on my stomach with my arms in the Superman position. Nurse told me the procedure would be done while the CT machine was taking pictures of the area. In other words, live. Dr. Sagar would be making an incision with a needle and cutting three pieces of the mass area. Needed to be somewhat awake in case he needed me to move. I am here to say that I felt each snip. First two hurt but the last one made me scream. Then I don't remember anything until I woke up in the recovery room.
The pain was horrible. Need something for pain please. And could Bill come back. Couldn't give me too much because they needed to see if the pain was caused by my breathing. Since the area that needed biopsied was near the lungs, there was a possibility (but not likely) he could accidentally snip the lung. Thus, collapsed lung. Once they established this was not the cause of my pain, they administered some additional pain meds. Yippee. Bill was able to come back then. Got something to drink and crackers to eat. They read my home instructions, got dressed, called for my Uber driver (wheelchair) and sent me home. Once home, I slept the rest of the afternoon.
Dr. Sarriera made an appointment to see me May 15th unless he had the results back sooner. Well, today I got an email from Desiree that Dr. Sarriera wants to see us this Friday, May 11th. Not feeling so good about this. He will usually tell me via email if things look good. Bill and I figure that he wants to get started on another treatment plan. A stronger treatment plan. I hope we are wrong but, oh well, won't say anymore.
Cheri, Matt, Connie and Madeleine came on Friday for a 5 day visit. I was so excited to meet my great niece Madeleine. She is now 16 month old. What a cutie. And, of course, very smart. One thing that came to my mind was how my step mother, Peg, would get my girls or my sister's kids to eat. When they would take a bite of food, she would shake her head and said, "Boy oh boy that's good"! Well, till they left today, I had Madeleine doing that with me. Matt actually said he remembered that. And I also used to do that with my grandkids. Memories. Miss them so much already.
Quote:
The experienced mountain climber is not intimidated by a mountain, he is inspired by it.
Wednesday, May 2, 2018
Look at your hair.
Yesterday was my last day of treatment for this cycle. Won't start again until May 15th. I love these breaks. Just get feeling like myself and back at it. Anyway, yesterday I had a little problem during my infusion. Labs came back really quick and my Kyprolis was mixed and sent to my oncology nurse (Christina). She started the Kyprolis and I decided to just lay my head back and close my eyes while it dripped. About 3 minutes in to the drip, I felt really hot. I opened my eyes and lifted my head. I told Bill I felt like I was going to get sick. Christina heard me and asked if I was okay? Told her the same. She came over and stopped the dripped. Said I was really flushed looking. She got the PA that works on the floor and in came 3 other nurses. All standing there watching me. The PA asked if I wanted something for the nausea. Zofran. Bill and I were familiar with this. Took a lot of this after my stem cell transplant. Got that injected in my port. One of the nurses got me a ginger ale. Once that was injected, the PA and 2 of the nurses left. So then I just had two nurses watching me. Christina said they were waiting 15 minutes until the Zofran settled my stomach to start up the Kyprolis again. 15 minutes passed and she started it again. Watching me closely. I was okay. No reactions. Finally the other nurse left. Once the Kyprolis finished, she flushed the port with Saline and then flushed with Hepfran. Then told me she wasn't going to let me leave for another 15 minutes to make sure I was okay. I asked what could have made this happened. Christina explained you can develop a reaction to any drug at any time. Finally I was dismissed. Felt okay.
Once I got home, I felt very down and had a good cry for a bit. Hate the crying but there are times I just need to let it out. There are times that I am so tired of treatments. There are times that I am so tire of taking meds. There are times I feel alone in my journey with this disease (even though I know I am not). There are times I just want to told that it will be okay. There are times I want to hear they found a cure for Myeloma. There are times I want to say, I may sound good or look good but look in my heart and feel my mental pain. There are times!!! There are times!!! Then I feel asleep.
Tomorrow is my biopsy. We were told first to be there at 9. Then next person that I talked to said 8 and the last person said 7:30. That means we have to leave here at 6:30. Really!!!! I told the last person I talked to that the last time I came in early like that, I sat for almost an hour in the waiting room to go back to prepare for my surgery (this biopsy is scheduled for 10). Takes longer to prepare if you have a port, BLAH, BLAH, BLAH. So we will see how long I have to wait tomorrow.
They didn't see anything on my head from the Pet Scan. This scan was done because of my concern of a new lump on my head. They found what they think is Myeloma in the soft tissue near my thoracic spine. Hence, the biopsy tomorrow. I am still concerned about this lump on my head as it continues to grow. Emailed Dr. Sarriera regarding this. He wants to do an MRI of just my head even though the Pet Scan shows more details. This is scheduled for May 17th. Our calendar is getting full for May with appointments. (:
When I emailed Dr. Sarriera (really Desiree gets it and discusses it with him), I told them I was sorry to be a burden on them . Here is Desiree's response:
"You are not a burden. Working in oncology is a choice. We do this because we love it and we want to help. You didn't choose cancer, but we choose to help you and others dealt that hand. Don't ever feel like you are a bother to us."
Just the encouraging words I needed after my day yesterday. And I surely let her know! She really cares about her patients.
Bill's appointment for his exam of his head was cancelled. Rescheduled for May 10th. We were a little disappointed because wanted to see how it looked to the doctor. We think it looks great for not having it stitched. I am a good nurse.
I had two prescriptions to pick up at the pharmacy at the Cancer Center. When I went in, Marie waited on me. She knows me by name from all the times I have picked up scripts. She doesn't work the front as much any more so haven't seen her for quite a while. First thing she said to me was - "Look at your hair. It looks so nice. I am so used to seeing you with your hats on. Wow!"
Quote:
It is so easy to forget how precious it is to be alive.
Yesterday was my last day of treatment for this cycle. Won't start again until May 15th. I love these breaks. Just get feeling like myself and back at it. Anyway, yesterday I had a little problem during my infusion. Labs came back really quick and my Kyprolis was mixed and sent to my oncology nurse (Christina). She started the Kyprolis and I decided to just lay my head back and close my eyes while it dripped. About 3 minutes in to the drip, I felt really hot. I opened my eyes and lifted my head. I told Bill I felt like I was going to get sick. Christina heard me and asked if I was okay? Told her the same. She came over and stopped the dripped. Said I was really flushed looking. She got the PA that works on the floor and in came 3 other nurses. All standing there watching me. The PA asked if I wanted something for the nausea. Zofran. Bill and I were familiar with this. Took a lot of this after my stem cell transplant. Got that injected in my port. One of the nurses got me a ginger ale. Once that was injected, the PA and 2 of the nurses left. So then I just had two nurses watching me. Christina said they were waiting 15 minutes until the Zofran settled my stomach to start up the Kyprolis again. 15 minutes passed and she started it again. Watching me closely. I was okay. No reactions. Finally the other nurse left. Once the Kyprolis finished, she flushed the port with Saline and then flushed with Hepfran. Then told me she wasn't going to let me leave for another 15 minutes to make sure I was okay. I asked what could have made this happened. Christina explained you can develop a reaction to any drug at any time. Finally I was dismissed. Felt okay.
Once I got home, I felt very down and had a good cry for a bit. Hate the crying but there are times I just need to let it out. There are times that I am so tired of treatments. There are times that I am so tire of taking meds. There are times I feel alone in my journey with this disease (even though I know I am not). There are times I just want to told that it will be okay. There are times I want to hear they found a cure for Myeloma. There are times I want to say, I may sound good or look good but look in my heart and feel my mental pain. There are times!!! There are times!!! Then I feel asleep.
Tomorrow is my biopsy. We were told first to be there at 9. Then next person that I talked to said 8 and the last person said 7:30. That means we have to leave here at 6:30. Really!!!! I told the last person I talked to that the last time I came in early like that, I sat for almost an hour in the waiting room to go back to prepare for my surgery (this biopsy is scheduled for 10). Takes longer to prepare if you have a port, BLAH, BLAH, BLAH. So we will see how long I have to wait tomorrow.
They didn't see anything on my head from the Pet Scan. This scan was done because of my concern of a new lump on my head. They found what they think is Myeloma in the soft tissue near my thoracic spine. Hence, the biopsy tomorrow. I am still concerned about this lump on my head as it continues to grow. Emailed Dr. Sarriera regarding this. He wants to do an MRI of just my head even though the Pet Scan shows more details. This is scheduled for May 17th. Our calendar is getting full for May with appointments. (:
When I emailed Dr. Sarriera (really Desiree gets it and discusses it with him), I told them I was sorry to be a burden on them . Here is Desiree's response:
"You are not a burden. Working in oncology is a choice. We do this because we love it and we want to help. You didn't choose cancer, but we choose to help you and others dealt that hand. Don't ever feel like you are a bother to us."
Just the encouraging words I needed after my day yesterday. And I surely let her know! She really cares about her patients.
Bill's appointment for his exam of his head was cancelled. Rescheduled for May 10th. We were a little disappointed because wanted to see how it looked to the doctor. We think it looks great for not having it stitched. I am a good nurse.
I had two prescriptions to pick up at the pharmacy at the Cancer Center. When I went in, Marie waited on me. She knows me by name from all the times I have picked up scripts. She doesn't work the front as much any more so haven't seen her for quite a while. First thing she said to me was - "Look at your hair. It looks so nice. I am so used to seeing you with your hats on. Wow!"
Quote:
It is so easy to forget how precious it is to be alive.
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