5th floor lady.
A little more bad news today. My labs from the Myeloma testings are back. They are posted on my health portal. Sent an email to Desiree for some explanations even though we sort of know what they mean. She had Abby call me. So the M-spike is showing 0. This is a measurement Dr. Sarriera usually uses to measure Myeloma in the blood. Abby said that it is probably .1 and just not measuring. Reason she is saying this is because my Lambda light chain and my Kappa Lambda ratios are not good. These are showing there is Myeloma in my blood that is now measurable according to these ratios. When the Lambda light chains numbers increase and the Kappa Lambda ratio decrease, this is a indication of Multiple Myeloma. This is what is happening to my numbers. We figured as much since I found that lump during radiation. But didn't really want to hear it.
Dr. Sarreria already had my plan set even without seeing these Myeloma labs. My plan starts tomorrow, Thursday, August 17th. I will get my first IV drip of Kyprolis. Thinking my port incision isn't healed enough to start using it tomorrow. I am okay with them inserting a line in my arm or hand to use until this heals. I have been stuck some many times I even watch now. The oncology nurse will examine the port area tomorrow and decide to use or not to use according to Abby. After the IV drip, I will pick up my Pomalyst (chemo pills) and my Dexamethasone (steroid pills) and start taking them once I am home. 21 days on and a week off for the Pomalyst (1pill); Dex every 7 days no break (10 pills), Kyprolis every Thursday and Friday for three weeks and one week off. Not sure of the strength of the Kyprolis yet. They will do labs to check my counts and make that decision then. The labs will be done on Thursdays.
This treatment plan is going to work. It's going to move my numbers back to the good level. It's going to knock this cancer out of me. It's going to make me smile a real smile, laugh a real laugh. This is something that Bill has been waiting for. Something that I want for Bill.
Tomorrow I will go back to the 5th floor of the Cancer Center to start my treatment. The 5th floor where I had my Velcade shot every Friday and Monday last year. The 5th floor with Julia, Kara, Tammy and names of other oncology nurses I can't remember. I do remember the one nurse that I will not go to her station. That name will stick forever. The one 5th floor lady I am anxious to see is, um, um, can't remember her name either. She is one of the receptionists for the 5th floor team. So pleasant and a great person to be your first contact when you get off that elevator. I am anxious to see them again but not for the reason I am back.
Quote:
I have learned that it's not what I have in my life but who I have in my life that counts.
Wednesday, August 16, 2017
Monday, August 14, 2017
Only 3 people.
Tonight was our monthly Myeloma meeting. I have said this before and I will say again "I love this meeting. What a special group we are"! Sharing our successes. Sharing our failures. Sharing our personal, dehumanizing side effects knowing that someone else there has experienced or is experiencing the same. Sharing a few laughs at the disease. Sharing the part our caregivers provide. Sharing the knowledge of one another. Sharing the love we really feel for each other. Sharing our faith. Strangers brought together by a cancer. Strangers brought together by Multiple Myeloma. Strangers from a young age of probably 35 to Don who will be 84 the end of the month. Strangers battling our battles together.
Ben. The youngest probably of our group. Ben. Who told me I was an inspiration to him several meetings ago. Ben. Who was diagnosed about the same time I was in July 2016. Ben. Who was doing so good. Ben. Now has relapsed. Ben. Now has a tumor on his backbone. Plasmacytoma. Amazing that Ben and I seem to be following each other with our Myeloma journey. He will be doing radiation starting this week. I pray this week for all "the strangers" but mostly for Ben.
Ken is the name of the guy who started the group. Next month will be 10 years since he first started it. At the time there were only 3 people and Ken was one of them. Now I would say there are probably 20 "strangers" that make it every month and another 5 that make it occasionally. Not sure how many have lost the battle since he started the group but Ken has someone light a candle each month in honor of those persons. We are so glad we found this group. Thank you Kristi!!!
Quote:
The best love is the kind that awakens the soul and makes us reach for more.
Tonight was our monthly Myeloma meeting. I have said this before and I will say again "I love this meeting. What a special group we are"! Sharing our successes. Sharing our failures. Sharing our personal, dehumanizing side effects knowing that someone else there has experienced or is experiencing the same. Sharing a few laughs at the disease. Sharing the part our caregivers provide. Sharing the knowledge of one another. Sharing the love we really feel for each other. Sharing our faith. Strangers brought together by a cancer. Strangers brought together by Multiple Myeloma. Strangers from a young age of probably 35 to Don who will be 84 the end of the month. Strangers battling our battles together.
Ben. The youngest probably of our group. Ben. Who told me I was an inspiration to him several meetings ago. Ben. Who was diagnosed about the same time I was in July 2016. Ben. Who was doing so good. Ben. Now has relapsed. Ben. Now has a tumor on his backbone. Plasmacytoma. Amazing that Ben and I seem to be following each other with our Myeloma journey. He will be doing radiation starting this week. I pray this week for all "the strangers" but mostly for Ben.
Ken is the name of the guy who started the group. Next month will be 10 years since he first started it. At the time there were only 3 people and Ken was one of them. Now I would say there are probably 20 "strangers" that make it every month and another 5 that make it occasionally. Not sure how many have lost the battle since he started the group but Ken has someone light a candle each month in honor of those persons. We are so glad we found this group. Thank you Kristi!!!
Quote:
The best love is the kind that awakens the soul and makes us reach for more.
Sunday, August 13, 2017
Words of many.
CANCER STRONG STRENGTH CARING HOPE BILL BELIEVE CANCER RESULTS MRI KNOWLEDGE KRISTI BONE MARROW M SPIKE CANCER CHEMO PRAY MYELOMA COURAGE FAITH CANCER RADIATION KERRI SURVIVOR LABS PLASMACYTOMA BIOPSY BRAVERY CURE PEACE PET SCAN CAREGIVER FIGHT FEAR CANCER BURGUNDY DIAGNOSIS LIFE CALM CANCER DESIREE TREATMENT PORT AWARENESS TEARS FATIGUE ABBY SUPPORT DETERMINATION HOPE IV FAMILY SARRIERA HAIR CANCER FRIENDS SCAR SURGERY CURE CURE CURE CANCER
As I wake up each morning these are just some of the words of many that float through my mind. Just a few. The word cancer is ever present and will be there for a long time. But I will fight this battle with Bill and my team of doctors and nurses till the word cancer is just a memory for me. Been fighting this for over a year now, time to make that memory happen don't you think?
Quote:
Only in You can I find hope for today and all my tomorrows. Thank you Lord, thank you.
CANCER STRONG STRENGTH CARING HOPE BILL BELIEVE CANCER RESULTS MRI KNOWLEDGE KRISTI BONE MARROW M SPIKE CANCER CHEMO PRAY MYELOMA COURAGE FAITH CANCER RADIATION KERRI SURVIVOR LABS PLASMACYTOMA BIOPSY BRAVERY CURE PEACE PET SCAN CAREGIVER FIGHT FEAR CANCER BURGUNDY DIAGNOSIS LIFE CALM CANCER DESIREE TREATMENT PORT AWARENESS TEARS FATIGUE ABBY SUPPORT DETERMINATION HOPE IV FAMILY SARRIERA HAIR CANCER FRIENDS SCAR SURGERY CURE CURE CURE CANCER
As I wake up each morning these are just some of the words of many that float through my mind. Just a few. The word cancer is ever present and will be there for a long time. But I will fight this battle with Bill and my team of doctors and nurses till the word cancer is just a memory for me. Been fighting this for over a year now, time to make that memory happen don't you think?
Quote:
Only in You can I find hope for today and all my tomorrows. Thank you Lord, thank you.
Wednesday, August 9, 2017
My drawer of hats.
Today was a rough day for me. The two incisions really ached and pulled. Ice and Tylenol seemed to help. Need a few more days to heal but I am too impatient. Tried to sew but didn't get anywhere with that either. I guess I just have to learn to rest when I need to. I try to make each day count. Tomorrow is another day. I have a lot of tomorrows. A lot of tomorrows to beat this.
I have a drawer beside my bed where I keep my hats. My drawer of hats. Hats of many colors. Hats of many shapes. Hats of many stories. Hats of many sleepless nights. Hats of many.
Quote:
Just because she looks so strong doesn't mean she didn't fall asleep crying.
Today was a rough day for me. The two incisions really ached and pulled. Ice and Tylenol seemed to help. Need a few more days to heal but I am too impatient. Tried to sew but didn't get anywhere with that either. I guess I just have to learn to rest when I need to. I try to make each day count. Tomorrow is another day. I have a lot of tomorrows. A lot of tomorrows to beat this.
I have a drawer beside my bed where I keep my hats. My drawer of hats. Hats of many colors. Hats of many shapes. Hats of many stories. Hats of many sleepless nights. Hats of many.
Quote:
Just because she looks so strong doesn't mean she didn't fall asleep crying.
Tuesday, August 8, 2017
Been in jail or homeless?
On the road at 5ish AM this morning for another trip to the Cancer Center. This time to ORMC (Orlando Regional Medical Center) the hospital attached to the Cancer Center. What, no traffic? May have seen 30 cars total on the way there. I know Kristi, you told us not to leave so early. Was there in record time. 30 minutes to be exact. This time we parked in the parking garage and sat a bit to pass some time away. I was to be there at 6 AM for registration. Finally walked from the garage to the hospital. Got signed in and sat waiting again. 15 minutes later someone came and took me to a registration desk. Collected some info, put on my hospital ID bracelet and took me back to the waiting area. Had to wait on the lab to get me to draw some blood and insert my IV. Got me for that and back to the waiting area to wait for Intervention Radiology to open for my surgery. That was another 30 minute wait. Finally a volunteer called my name and took Bill and I to yet another waiting room on the second floor of the hospital. He wasn't very friendly or maybe he just wasn't a morning person. ;) Waited there about 10 minutes and a nurse came for me. Told Bill to wait and once they got me prepped, he could come back to my "holding" room. Did the brush the teeth, swab the gums, tongue, gargle, swab the nose, wash the chest and back, get in to the beautiful hospital gown and their socks. And this was all done by a nurses' aid for me. Heart monitors stuck on, blood pressure cuff on, IV cords plugged in. Talked with the doctor, answer another bunch of questions, talk with assistant anesthesiologist, talk with lead anesthesiologist, signed consent forms. This all done, waiting for the operating room to be prepared.
Another nurse, another nurse and yet another nurse introducing themselves. Going to be in the operating room with me. Time noted, bracelet read, asked me my name and date of birth and what procedure I was having done and I was off. The first one in the operating room. Bill said that was great because all the knives were the sharpest. Got over to the operating room and they were helping me get on the operating table and the nurses were told the doctor had to go to OCC, short for occupational therapy. I was given the option to just wait there or go back to the holding area. Wait there. Nurse had to do an ultrasound of the large veins in my neck to see which on they would put the catheter in that hooks to the port. These ports are usually put in the right side of your chest. Well, of course, they couldn't find a vein to use on the right side of my neck. So left side it was. Nurse said she was giving me a nice cocktail and that's all I remember.
I have two cuts. One about 2 inches long in the neck area and one about 4 inches long below that one in the chest area. They place the port (which is about the size of a quarter) in the chest with the catheter running up to the central vein (that takes blood to my heart) in my neck. Can I now say ouch? My neck hurts to move it up, down, around, side to side. Popping those Tylenol pills. Been icing it and moving my neck to exercise it some. Not fun.
So that is done. Now need to get this chemo started and moving on. All that starts next Thursday. Just need to get started. Need to kill these cancer cells that seem to want to keep popping up. Need to get me on a plan that works. Need to get me back to feeling good about me.
Yesterday, the preregistration nurse called me. Of course, had to answer a zillion questions. Most of them I had already answered a zillion times. She acknowledged this when she called. Still have to asked to verify once again. One question I was asked was if I have traveled outside the US in the last month. I have seen signs in my oncologist's office, my radiologist's office, in the bathrooms of the Cancer Center asking this same question. Of course the answer was no. But this question has never been asked before, "Have I ever been in jail or been homeless?" I sort of hesitated when asked only because it took me by surprise.
Quote:
If I could make one wish, it wouldn't be for riches or fame. I'd wish for a CURE.
On the road at 5ish AM this morning for another trip to the Cancer Center. This time to ORMC (Orlando Regional Medical Center) the hospital attached to the Cancer Center. What, no traffic? May have seen 30 cars total on the way there. I know Kristi, you told us not to leave so early. Was there in record time. 30 minutes to be exact. This time we parked in the parking garage and sat a bit to pass some time away. I was to be there at 6 AM for registration. Finally walked from the garage to the hospital. Got signed in and sat waiting again. 15 minutes later someone came and took me to a registration desk. Collected some info, put on my hospital ID bracelet and took me back to the waiting area. Had to wait on the lab to get me to draw some blood and insert my IV. Got me for that and back to the waiting area to wait for Intervention Radiology to open for my surgery. That was another 30 minute wait. Finally a volunteer called my name and took Bill and I to yet another waiting room on the second floor of the hospital. He wasn't very friendly or maybe he just wasn't a morning person. ;) Waited there about 10 minutes and a nurse came for me. Told Bill to wait and once they got me prepped, he could come back to my "holding" room. Did the brush the teeth, swab the gums, tongue, gargle, swab the nose, wash the chest and back, get in to the beautiful hospital gown and their socks. And this was all done by a nurses' aid for me. Heart monitors stuck on, blood pressure cuff on, IV cords plugged in. Talked with the doctor, answer another bunch of questions, talk with assistant anesthesiologist, talk with lead anesthesiologist, signed consent forms. This all done, waiting for the operating room to be prepared.
Another nurse, another nurse and yet another nurse introducing themselves. Going to be in the operating room with me. Time noted, bracelet read, asked me my name and date of birth and what procedure I was having done and I was off. The first one in the operating room. Bill said that was great because all the knives were the sharpest. Got over to the operating room and they were helping me get on the operating table and the nurses were told the doctor had to go to OCC, short for occupational therapy. I was given the option to just wait there or go back to the holding area. Wait there. Nurse had to do an ultrasound of the large veins in my neck to see which on they would put the catheter in that hooks to the port. These ports are usually put in the right side of your chest. Well, of course, they couldn't find a vein to use on the right side of my neck. So left side it was. Nurse said she was giving me a nice cocktail and that's all I remember.
I have two cuts. One about 2 inches long in the neck area and one about 4 inches long below that one in the chest area. They place the port (which is about the size of a quarter) in the chest with the catheter running up to the central vein (that takes blood to my heart) in my neck. Can I now say ouch? My neck hurts to move it up, down, around, side to side. Popping those Tylenol pills. Been icing it and moving my neck to exercise it some. Not fun.
So that is done. Now need to get this chemo started and moving on. All that starts next Thursday. Just need to get started. Need to kill these cancer cells that seem to want to keep popping up. Need to get me on a plan that works. Need to get me back to feeling good about me.
Yesterday, the preregistration nurse called me. Of course, had to answer a zillion questions. Most of them I had already answered a zillion times. She acknowledged this when she called. Still have to asked to verify once again. One question I was asked was if I have traveled outside the US in the last month. I have seen signs in my oncologist's office, my radiologist's office, in the bathrooms of the Cancer Center asking this same question. Of course the answer was no. But this question has never been asked before, "Have I ever been in jail or been homeless?" I sort of hesitated when asked only because it took me by surprise.
Quote:
If I could make one wish, it wouldn't be for riches or fame. I'd wish for a CURE.
Sunday, August 6, 2017
I will survive.
I got the call making my appointment for my port insertion. Intervention Radiology. Sounds scary doesn't it? You all know that I am not a morning person but I guess they don't. My appointment is for Tuesday at 6 AM. Yep, 6 AM. The actual surgery time is at 8 AM but I have to be there at 6 AM. We will have to leave here a bit after 5. That means up at 4 AM. The ride there shouldn't take near as long as usual. I don't think there will be much traffic then. But again, there doesn't seem to be any time there isn't some traffic in Orlando or its surrounding area. I will be put under for this procedure so I will be sleeping most of the day to make up for the early morning uprising.
Thursday and Friday were not real good days for Bill or me. Thursday, of course, was the day of my doctors appointment and we had to digest more disappointing news. Neither one of us got a lot of sleep that night. Friday morning it hit me again. Then I looked in the mirror at my head where the radiation was targeted. Well, Dr. Nanda was right when he said the radiation would continue to work for a bit. My hair. My hair in the area of the radiation had almost all fallen out. My hair. My hair, even though it was only maybe 1/4 inch long, was almost all gone where the radiation was administered. A nice large area of a bald head was very visible. A large bald area of my head. Bald. Very upsetting even though Dr. Nanda said this would happen. Very upsetting to see a large bald area and yet see hair growing on the other parts of my scalp. Hair that is once again 1/4 inch long. I am now praying the hair on this bald spot will grow back again. Dr. Nanada said there is a small percentage of people whose hair doesn't not grow back in the area of the radiation but I choose not to be among that percentage. I choose to not have to wear a wig. I choose not to have to wear a hat or scarf forever. I choose to have hair again. I pray this bald spot is just for the time being. So many tears Friday morning. So many.
Remember the song I will Survive by Gloria Gaynor? Well, I heard that song the other day and I thought some of the words were being sung to me. Not all of them of course but some of them. Like:
Oh, no, not I
I will survive.
Oh, as long as I know how to love I know I'll stay alive
I got all my life to live
I got all my love to give
I will survive.
Go on now, go. Walk out the door
Just turn around now cause you're not welcome anymore.
I will survive.
Like I said, not all the words. Just these few.
Quote:
It's not about bravery. It's about what I need to do to win my battle against Multiple Myeloma.
I got the call making my appointment for my port insertion. Intervention Radiology. Sounds scary doesn't it? You all know that I am not a morning person but I guess they don't. My appointment is for Tuesday at 6 AM. Yep, 6 AM. The actual surgery time is at 8 AM but I have to be there at 6 AM. We will have to leave here a bit after 5. That means up at 4 AM. The ride there shouldn't take near as long as usual. I don't think there will be much traffic then. But again, there doesn't seem to be any time there isn't some traffic in Orlando or its surrounding area. I will be put under for this procedure so I will be sleeping most of the day to make up for the early morning uprising.
Thursday and Friday were not real good days for Bill or me. Thursday, of course, was the day of my doctors appointment and we had to digest more disappointing news. Neither one of us got a lot of sleep that night. Friday morning it hit me again. Then I looked in the mirror at my head where the radiation was targeted. Well, Dr. Nanda was right when he said the radiation would continue to work for a bit. My hair. My hair in the area of the radiation had almost all fallen out. My hair. My hair, even though it was only maybe 1/4 inch long, was almost all gone where the radiation was administered. A nice large area of a bald head was very visible. A large bald area of my head. Bald. Very upsetting even though Dr. Nanda said this would happen. Very upsetting to see a large bald area and yet see hair growing on the other parts of my scalp. Hair that is once again 1/4 inch long. I am now praying the hair on this bald spot will grow back again. Dr. Nanada said there is a small percentage of people whose hair doesn't not grow back in the area of the radiation but I choose not to be among that percentage. I choose to not have to wear a wig. I choose not to have to wear a hat or scarf forever. I choose to have hair again. I pray this bald spot is just for the time being. So many tears Friday morning. So many.
Remember the song I will Survive by Gloria Gaynor? Well, I heard that song the other day and I thought some of the words were being sung to me. Not all of them of course but some of them. Like:
Oh, no, not I
I will survive.
Oh, as long as I know how to love I know I'll stay alive
I got all my life to live
I got all my love to give
I will survive.
Go on now, go. Walk out the door
Just turn around now cause you're not welcome anymore.
I will survive.
Like I said, not all the words. Just these few.
Quote:
It's not about bravery. It's about what I need to do to win my battle against Multiple Myeloma.
Thursday, August 3, 2017
Liquid nails.
Well, had my doctor's appointment with Dr. Sarriera today. First it was to the first floor for labs and then up to the 2nd for my appointment. This appointment was a follow up after my radiation with
Dr. Nanda and team. We had a feeling it wasn't going to go so well because I found another lump on my head. This I found about 2 days before my radiation treatment was over. However, I didn't mention it to anyone, not even Bill (told him this morning). Was hoping that it was in the line of attack for the radiation even though I knew it wasn't. It started out the same as the others. Small hard lump. Pain around the perimeters if you touch it.
Dr. Sarriera came in the room with his usual smile. Asked me a few questions and then talked about examining my head. At this time, I told him about the new lump. The smile became a look of worry. He examined the area of my head where the radiation had attacked. Then the new lump. Almost immediately he said he agreed with me that this was a new area of cancer. He then said he had plan on discussing my maintenance plan with me but now he wanted this new plan put in to action. Just that quick, his mind shifted from one treatment plan to another. No hesitation, no let me go to my office and think about this, no come back in a week and we will have something worked out for you, no look of of, what am I going to do. Just rattled of his treatment plan for this new set back. After he discussed the treatment, he said this is very unusual to come back so quickly but this is a very aggressive cancer. I told him I really hadn't plan to coming in today and hearing "it's back"! I had hope to come in, talk with him and leave with a smile on my face, not a tear stained face. He said he had hope for a better visit too. Then we went over the treatment plan again.
I will be going on a chemo drug called Pomalyst (would have been the same drug if I was just doing maintenance). This I will take for 21 days and then have a week off. This is a cousin to Revlimid but hopefully no rash. Then I will be going to the Cancer Center for a IV drip of a chemo med called Kyprolis (Carfilzomib) every Thursday and Friday. This too will be 3 weeks on and 1 week off. I will be getting a port put in my chest to encompass this drip. That procedure for the port will probably be sometime next week. Will be done at ORMC (hospital attached to the Cancer Center). Will be put under for this procedure. Then I also will be taking Decadron (Dexamethasone) which is a steroid. I have taken this before. That I will take weekly. No break. This regiment will continue for 4 to 6 months. Probably most likely be for six months he said. I will monitored with labs during the treatment. Dr. Sarriera also mentioned if we find out for some reason this treatment plan isn't working, there are several others drugs out there to try. He always seems to be me to be so confident in his decisions. Never once has he said that he knew something wasn't going to work. Again, I said I wasn't expecting all this again after a year of battling this Multiple Myeloma. He did say "I know sweetie, me neither." That along with a hug. This all will start the 17th of August. He wants to give the radiation more time and to make sure all side effects are done. Haven't had any that I know of other than a few days I felt fatigued in the afternoon. AND the biggest one, I have lost almost all my hair in the area of attack from the radiation. AND there is a chance it will not grow back. This does not make me happy and I will be honest, I have shed a few tears over this too. And sure I will again. Not a pretty site.
Desiree then came in with all the info printed out for us to read. Went over my schedule of drugs again. She is making a calendar to help with the days of the meds etc. I have to say that when she walked in the room, as upset as I was, I had to chuckle. Remember she is pregnant with twin? I don't think I have every seen anyone's belly that big. Whoa!! She even has a harness strapped around her shoulders and back to help hold up her belly. No kidding. She is so happy go lucky though. Her scheduled C-section is September 28th. I will be surprised if she makes it that long. Said she will work up until that time. Will have a hard time dealing with some of my issues without her there to help me through them. I know her temp will be there but not the same. Desiree said she already told her (Denise) about her patients and how they are treated by her for their special needs. You go, Desiree.
Am I upset over all this? I sure am and will be for a bit. I will scream, cry, kick and be angry once again as I was 1 year ago. I sure will. But I will continue to hope and pray this will be my final treatment. I will continue to hope and pray that this treatment will work and I can move on to maintenance. Something I never got to try. Right now, I am tired, upset and so disappointed. I know I will carry on as I normally do but that may not be for a bit. Right now, I need to be upset!! So bear with me a few days. Let me talk and be mad. But please continue to pray that this all soon calms down for Bill and me. We need it and appreciate it.
The cream the radiation team told me to use on my scalp after my treatment is Aquaphor. I currently use Cetiphil and asked if I could use that till I got some Aquaphor. No problem. So I was in no rush to get the Aquaphor and I finally got some today. I laid it on our island. I grabbed it a bit ago to put some on my head. So glad I looked before I did because I actually picked up a tube of Liquid Nails instead. Hey, who knows, maybe the Liquid Nails would have made my hair grow back.
Quote:
No matter how good or bad you think life is, wake up each day and be thankful to God for your life. Someone, somewhere is fighting to survive.
Well, had my doctor's appointment with Dr. Sarriera today. First it was to the first floor for labs and then up to the 2nd for my appointment. This appointment was a follow up after my radiation with
Dr. Nanda and team. We had a feeling it wasn't going to go so well because I found another lump on my head. This I found about 2 days before my radiation treatment was over. However, I didn't mention it to anyone, not even Bill (told him this morning). Was hoping that it was in the line of attack for the radiation even though I knew it wasn't. It started out the same as the others. Small hard lump. Pain around the perimeters if you touch it.
Dr. Sarriera came in the room with his usual smile. Asked me a few questions and then talked about examining my head. At this time, I told him about the new lump. The smile became a look of worry. He examined the area of my head where the radiation had attacked. Then the new lump. Almost immediately he said he agreed with me that this was a new area of cancer. He then said he had plan on discussing my maintenance plan with me but now he wanted this new plan put in to action. Just that quick, his mind shifted from one treatment plan to another. No hesitation, no let me go to my office and think about this, no come back in a week and we will have something worked out for you, no look of of, what am I going to do. Just rattled of his treatment plan for this new set back. After he discussed the treatment, he said this is very unusual to come back so quickly but this is a very aggressive cancer. I told him I really hadn't plan to coming in today and hearing "it's back"! I had hope to come in, talk with him and leave with a smile on my face, not a tear stained face. He said he had hope for a better visit too. Then we went over the treatment plan again.
I will be going on a chemo drug called Pomalyst (would have been the same drug if I was just doing maintenance). This I will take for 21 days and then have a week off. This is a cousin to Revlimid but hopefully no rash. Then I will be going to the Cancer Center for a IV drip of a chemo med called Kyprolis (Carfilzomib) every Thursday and Friday. This too will be 3 weeks on and 1 week off. I will be getting a port put in my chest to encompass this drip. That procedure for the port will probably be sometime next week. Will be done at ORMC (hospital attached to the Cancer Center). Will be put under for this procedure. Then I also will be taking Decadron (Dexamethasone) which is a steroid. I have taken this before. That I will take weekly. No break. This regiment will continue for 4 to 6 months. Probably most likely be for six months he said. I will monitored with labs during the treatment. Dr. Sarriera also mentioned if we find out for some reason this treatment plan isn't working, there are several others drugs out there to try. He always seems to be me to be so confident in his decisions. Never once has he said that he knew something wasn't going to work. Again, I said I wasn't expecting all this again after a year of battling this Multiple Myeloma. He did say "I know sweetie, me neither." That along with a hug. This all will start the 17th of August. He wants to give the radiation more time and to make sure all side effects are done. Haven't had any that I know of other than a few days I felt fatigued in the afternoon. AND the biggest one, I have lost almost all my hair in the area of attack from the radiation. AND there is a chance it will not grow back. This does not make me happy and I will be honest, I have shed a few tears over this too. And sure I will again. Not a pretty site.
Desiree then came in with all the info printed out for us to read. Went over my schedule of drugs again. She is making a calendar to help with the days of the meds etc. I have to say that when she walked in the room, as upset as I was, I had to chuckle. Remember she is pregnant with twin? I don't think I have every seen anyone's belly that big. Whoa!! She even has a harness strapped around her shoulders and back to help hold up her belly. No kidding. She is so happy go lucky though. Her scheduled C-section is September 28th. I will be surprised if she makes it that long. Said she will work up until that time. Will have a hard time dealing with some of my issues without her there to help me through them. I know her temp will be there but not the same. Desiree said she already told her (Denise) about her patients and how they are treated by her for their special needs. You go, Desiree.
Am I upset over all this? I sure am and will be for a bit. I will scream, cry, kick and be angry once again as I was 1 year ago. I sure will. But I will continue to hope and pray this will be my final treatment. I will continue to hope and pray that this treatment will work and I can move on to maintenance. Something I never got to try. Right now, I am tired, upset and so disappointed. I know I will carry on as I normally do but that may not be for a bit. Right now, I need to be upset!! So bear with me a few days. Let me talk and be mad. But please continue to pray that this all soon calms down for Bill and me. We need it and appreciate it.
The cream the radiation team told me to use on my scalp after my treatment is Aquaphor. I currently use Cetiphil and asked if I could use that till I got some Aquaphor. No problem. So I was in no rush to get the Aquaphor and I finally got some today. I laid it on our island. I grabbed it a bit ago to put some on my head. So glad I looked before I did because I actually picked up a tube of Liquid Nails instead. Hey, who knows, maybe the Liquid Nails would have made my hair grow back.
Quote:
No matter how good or bad you think life is, wake up each day and be thankful to God for your life. Someone, somewhere is fighting to survive.
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