Lightening.
My days from last treatment till today was not without some painful headaches and fatigue. Infusions were Tuesday. Tuesday night I had a headache plus pressure around the eyes. Took a sinus pin (Bill got me a Walgreen's brand with guaifenesin in it that was recommended by my doctor) before I went to bed. Up a bit because of the steroids. Wednesday the same; took a sinus pill. Kyprols treatment. Very tired. Michelle and Gery had us over for dinner. Took another sinus pill, 2 Tylenol and was able to sleep. Thursday, more of the same. Just popping those sinus pills. Friday was not good. Headache, pressure behind the eyes, shooting pain from sinus to head, along with fatigue. Was able to get some relief and went to Kristi and Matt's for dinner. Saturday once again started with the bad headache, sinus pain, shooting pains. Bill got me a different sinus pill (CVS brand with the drug recommended but higher dose) Took one along with Aleve (not supposed to take Aleve - blood count down and messes with stomach during treatments). Took another sinus pill around 1:30. Finally subsided about 4. Started again around 9. Another pill and another Aleve. Also, along with the pills, I have been using the oil that Kerri sent me. Called Past Tense. She uses it for her migraine headaches and regular headaches. And Kristi uses it as well. Sunday felt pretty good. Very minimal headache and sinus pain. Was able to get in the pool and Michelle and Gery come over. Very spontaneous day. Was great fun!!! Love ending this week with a happy day.
So far, Monday this week, had minimal headache and sinus pain. And today, Tuesday, started out the same. But had my number 6 Darzalex, Kyprolis, Dex treatments today. Headaches started around 8 along with the pressure behind my heads. Sinus pill, Tylenol. Hope this week is not a repeat of last week. I only have 2 more Darzalex treatments of these first 8 to go. I really want to beat these headaches because I need to have Darzalex work and get rid of the tumor that was found.
Friday is the CT scan of my sinuses. Don't think they will find anything but you never know.
When we watch our local weather news, not only do they saw where the storms are on the map, they show the lightening strikes. Florida is the lightening capital of the United States. Did you know that?
Quote:
Cancer isn't a straight line. It's ups and downs.
Tuesday, June 26, 2018
Tuesday, June 19, 2018
Brenda.
Today on our way to our 5th treatment of Darzalex, Dex and Kyprolis, I asked Bill what would we be doing if we didn't have all these treatment, doctor's appointments, MRIs, CTs, Pet Scans, etc? His response was, "We would be exploring Florida. Day or 2 day trips here and there. Like St. Augustine, places on the Gulf side, taking trips to CO to see Kerri and family, more time spent with the granddaughters here, beach. But we are doing treatments, have doc appointments, scans etc. So this is our life now." These things were said with smiles on our faces. Our life has changed. This is what we do now. This is what we have to do now. I am so glad we have each other to do our life as we have to do now.
My appointment today started at 8:30. Port access, labs, waiting on labs, approval from Dr. Sarriera, premeds, Kyprolis, wait 15 minutes, 10:30 - start the Darzalex. Done by 3:30. 5 hours. I slept from about 11 till the last 10 minutes. Only awaken by my nurse, Veronica, every hour for vitals. Went right back to sleep. No infusion related reactions. And hopefully, no reactions of the meds as the next couple of days roll on. Tomorrow I have my Kyprolis drip at 2. Then done for the week. No headaches, no sinus pressure please!!!
I have only a few friends on Facebook. A little over 150. This is not many compared to some. That is great for them and this is great for me. One friend that I recently added (well has been quite a few months ago) was someone I graduated with quite a few months ago too (1967 Ha). She takes care of keeping up with the events going on with our class. She takes care of posting info in our class Facebook for us. Info like, breakfasts, reunions, classmates we lost, classmates needing prayers because of their health and whatever she hears that we should know. I am glad I was able to friend her. She now reads my blog and comments her good wishes, sends prayers, sends hugs even while she, husband and friends are vacationing. Reads and comments on other FB posts. Just want to thank you, Brenda, for once again hooking up with me and caring.
Quote:
Always find time for the things that make you feel happy to be alive.
Today on our way to our 5th treatment of Darzalex, Dex and Kyprolis, I asked Bill what would we be doing if we didn't have all these treatment, doctor's appointments, MRIs, CTs, Pet Scans, etc? His response was, "We would be exploring Florida. Day or 2 day trips here and there. Like St. Augustine, places on the Gulf side, taking trips to CO to see Kerri and family, more time spent with the granddaughters here, beach. But we are doing treatments, have doc appointments, scans etc. So this is our life now." These things were said with smiles on our faces. Our life has changed. This is what we do now. This is what we have to do now. I am so glad we have each other to do our life as we have to do now.
My appointment today started at 8:30. Port access, labs, waiting on labs, approval from Dr. Sarriera, premeds, Kyprolis, wait 15 minutes, 10:30 - start the Darzalex. Done by 3:30. 5 hours. I slept from about 11 till the last 10 minutes. Only awaken by my nurse, Veronica, every hour for vitals. Went right back to sleep. No infusion related reactions. And hopefully, no reactions of the meds as the next couple of days roll on. Tomorrow I have my Kyprolis drip at 2. Then done for the week. No headaches, no sinus pressure please!!!
I have only a few friends on Facebook. A little over 150. This is not many compared to some. That is great for them and this is great for me. One friend that I recently added (well has been quite a few months ago) was someone I graduated with quite a few months ago too (1967 Ha). She takes care of keeping up with the events going on with our class. She takes care of posting info in our class Facebook for us. Info like, breakfasts, reunions, classmates we lost, classmates needing prayers because of their health and whatever she hears that we should know. I am glad I was able to friend her. She now reads my blog and comments her good wishes, sends prayers, sends hugs even while she, husband and friends are vacationing. Reads and comments on other FB posts. Just want to thank you, Brenda, for once again hooking up with me and caring.
Quote:
Always find time for the things that make you feel happy to be alive.
Monday, June 18, 2018
Memories.
So the headaches did not stay away. They came back strong. So hard to keep my eyes open as they feel like they are going to pop out. Friday, Saturday, Sunday. Took one of the other meds that is similar to Mucinex. This seemed to work the best of all. Today, Monday, it's not near as bad. Is it because the Darzalex treatment from last Tuesday is almost out of my system? Is it because the new med is working? Answers please!!!
Today was our day to go to Moffitt Cancer Center in Tampa to meet with Dr. Ochoa for a consultation on his opinion as to my journey with Multiple Myeloma. Moffitt, where I got my transplant. Moffitt, where I spent almost 30 days 1 1/2 years ago recovering from my transplant. Moffitt, Tampa. We left around 8:30. My first appointment was at 12 for labs. Then 1 for Dr. Ochoa and 2:15 for my immunizations (my baby shots).
We got to Moffitt around 10:30. Way early but you just don't know what the traffic conditions will be on 417 and I4. Ate, then headed to customer service to asked where Dr. Ochoa's office was located. Been awhile and just wasn't too sure. Bill and I had a good laugh because I asked the customer service agent where, he told me and I walked away to get Bill. Then all of a sudden I forgot what he told me. Chemo brain is real!! Went back and asked him again. Good laugh even from him.
Elevator A, 4th floor, make a left, office on the right. BMT Clinic. Had my labs drawn and around 12:50 was called back to Dr. Ochoa's office. Sat there for only about 10 minutes and in he comes. Looked at me and said, "You really look different since the last time I saw you." Yes, hair and about 20 pounds heavier. Dr. Ochoa started off by asking some questions about my treatment plans etc. We discussed my labs, my treatment plans, my failed treatment plans, my CT's, Dexoscns, Pet scans, radiation, bone marrow biopsies, MRI's and my 3 relapses over the last 1 1/2 years since my transplant. He felt all the directions Dr. Sarriera where ones he would have chosen. And he totally agrees with the plan I am now on with the Darzalex is the right one at this time. I discussed my headaches with him. Behind my eyes, at my temples, across the top of my eyebrows and sometimes at the nape of my neck. (I have a CT scan of my sinuses scheduled for next Friday). He too, felt it is sinus related. I have a low level of antibodies making it hard to fight off certain infections. Dr. Ochoa recommend that I discuss with Dr. Sarriera the possibility of an IVIG infusion to help strengthen my immune system and possibly help with the headaches.
After being a bit emotional about my relapses and wanting a plan to work, Dr. Ochoa talked about what could happen next if the Darzalex failed. This could be before the plan was finished or even after a bit of time has gone by. The failure would show in my labs or my Pet scans etc.His recommendation would be for me to participate in a new clinical study regarding Car-T cells that he feels I would qualify for because of my "markers". Markers like relapses, low antibodies etc. Car-T cell treatment is where my T-cells (an immune type cell) are removed and changed in a laboratory to attack cancer cells. This process would be a 30 day stay at Moffitt. Dr. Ochoa is going to submit my info to the clinical trail to get my name on a waiting list. We are hoping this will never happen but this would be another plan in case it does.
We spent an hour with Dr. Ochoa and his PA Kristin. Can't wait to discuss with Dr. Sarriera. Good byes, good luck and off to get my 5 baby shots. DPT (diphtheria, tetanus and pertussis), Hip (flu), Hepatitis B, Polio and Pneumococcal Conjugate vaccine (pneumonia, meningitis). Ouch, ouch, ouch, ouch and OUCH. Done. Stopped at Starbucks for the first floor for a Chai Latte, got our car and home. Great visit. Glad we did it.
Pulling in to the Gold Valet parking at Moffitt started a flood of memories. Unhappy and happy memories. Remembering needing a wheel chair to go from labs, doctor's offices, infusions. Remembering infusions of potasium and other fluids. Remembering being so tired as I waited for appointments to see doctor or for labs. Remembering my head of no hair. Remembering wearing masks. Then I remember Christie the BMT receptionist. Remembering when I was so cold and so tired, Christie bringing me a blanket and helping me lie down on a small couch till my appointment with the doctor. Remembering the tuna, ham or turkey bag lunches we were able to enjoy a while waiting for appointments. Today I got to see and hug Christie again. She didn't recognize me with hair but she did remember once I mentioned the name Snowberger. So happy memories and unhappy memories. Memories of my Moffitt days.
Quote:
And if I relapse again, I will get up, dust myself off and try again.
So the headaches did not stay away. They came back strong. So hard to keep my eyes open as they feel like they are going to pop out. Friday, Saturday, Sunday. Took one of the other meds that is similar to Mucinex. This seemed to work the best of all. Today, Monday, it's not near as bad. Is it because the Darzalex treatment from last Tuesday is almost out of my system? Is it because the new med is working? Answers please!!!
Today was our day to go to Moffitt Cancer Center in Tampa to meet with Dr. Ochoa for a consultation on his opinion as to my journey with Multiple Myeloma. Moffitt, where I got my transplant. Moffitt, where I spent almost 30 days 1 1/2 years ago recovering from my transplant. Moffitt, Tampa. We left around 8:30. My first appointment was at 12 for labs. Then 1 for Dr. Ochoa and 2:15 for my immunizations (my baby shots).
We got to Moffitt around 10:30. Way early but you just don't know what the traffic conditions will be on 417 and I4. Ate, then headed to customer service to asked where Dr. Ochoa's office was located. Been awhile and just wasn't too sure. Bill and I had a good laugh because I asked the customer service agent where, he told me and I walked away to get Bill. Then all of a sudden I forgot what he told me. Chemo brain is real!! Went back and asked him again. Good laugh even from him.
Elevator A, 4th floor, make a left, office on the right. BMT Clinic. Had my labs drawn and around 12:50 was called back to Dr. Ochoa's office. Sat there for only about 10 minutes and in he comes. Looked at me and said, "You really look different since the last time I saw you." Yes, hair and about 20 pounds heavier. Dr. Ochoa started off by asking some questions about my treatment plans etc. We discussed my labs, my treatment plans, my failed treatment plans, my CT's, Dexoscns, Pet scans, radiation, bone marrow biopsies, MRI's and my 3 relapses over the last 1 1/2 years since my transplant. He felt all the directions Dr. Sarriera where ones he would have chosen. And he totally agrees with the plan I am now on with the Darzalex is the right one at this time. I discussed my headaches with him. Behind my eyes, at my temples, across the top of my eyebrows and sometimes at the nape of my neck. (I have a CT scan of my sinuses scheduled for next Friday). He too, felt it is sinus related. I have a low level of antibodies making it hard to fight off certain infections. Dr. Ochoa recommend that I discuss with Dr. Sarriera the possibility of an IVIG infusion to help strengthen my immune system and possibly help with the headaches.
After being a bit emotional about my relapses and wanting a plan to work, Dr. Ochoa talked about what could happen next if the Darzalex failed. This could be before the plan was finished or even after a bit of time has gone by. The failure would show in my labs or my Pet scans etc.His recommendation would be for me to participate in a new clinical study regarding Car-T cells that he feels I would qualify for because of my "markers". Markers like relapses, low antibodies etc. Car-T cell treatment is where my T-cells (an immune type cell) are removed and changed in a laboratory to attack cancer cells. This process would be a 30 day stay at Moffitt. Dr. Ochoa is going to submit my info to the clinical trail to get my name on a waiting list. We are hoping this will never happen but this would be another plan in case it does.
We spent an hour with Dr. Ochoa and his PA Kristin. Can't wait to discuss with Dr. Sarriera. Good byes, good luck and off to get my 5 baby shots. DPT (diphtheria, tetanus and pertussis), Hip (flu), Hepatitis B, Polio and Pneumococcal Conjugate vaccine (pneumonia, meningitis). Ouch, ouch, ouch, ouch and OUCH. Done. Stopped at Starbucks for the first floor for a Chai Latte, got our car and home. Great visit. Glad we did it.
Pulling in to the Gold Valet parking at Moffitt started a flood of memories. Unhappy and happy memories. Remembering needing a wheel chair to go from labs, doctor's offices, infusions. Remembering infusions of potasium and other fluids. Remembering being so tired as I waited for appointments to see doctor or for labs. Remembering my head of no hair. Remembering wearing masks. Then I remember Christie the BMT receptionist. Remembering when I was so cold and so tired, Christie bringing me a blanket and helping me lie down on a small couch till my appointment with the doctor. Remembering the tuna, ham or turkey bag lunches we were able to enjoy a while waiting for appointments. Today I got to see and hug Christie again. She didn't recognize me with hair but she did remember once I mentioned the name Snowberger. So happy memories and unhappy memories. Memories of my Moffitt days.
Quote:
And if I relapse again, I will get up, dust myself off and try again.
Wednesday, June 13, 2018
Past Tense.
Wanted to add this post as my headache has subsided. Yeah. Hope it stays that way. Just a dull area on my right side. I looked up my symptoms and decided what I had was a cluster headache. The pain behind the eyes was the determinator. Mainly on one side. Mine was on the right side. Bill and I were talking about reasons that could have caused these excruciating headaches. Could it have been the Kyprolis and the Darzalex together. Off Kyrpolis this week. Could it have been caused by the extra 20 mg of Dex. And stopped because my Dex was a relief drug for the headaches. The sedafed worked. Whatever helped, thanks.
Went to bed around 1:30 AM and was up around 3 AM. Steroids messing with my sleep. Couldn't go back to sleep so stayed up until 4:30 AM. Then I slept from 4:30 AM till about 7:30 AM. Got in to a panic situations because I thought I had to get ready for my Kyprolis drip. Duh, off the Kyprolis this week.
Michelle and I have been planning a yard sale for a few weeks now. Last Saturday was to be the official day. I just wasn't up to it. Going to try for this Saturday. Hope no headaches and no rain.
When Kerri heard about my headaches she asked me I had any of the oil left that she sent me 2 years ago called Past Tense. It's for headaches. Just rub in your temples and across your forehead. Don't remember it. So started going through a place where I would have put it. Nothing. Could still be in one of the suitcases when we went out to see Kerri and family. Kerri remembers that she had sent some to my address here and I took it to Moffitt. I found nothing. Kerri sent more. I am sure one of these days I will found more. Thanks Bear. Will be putting on my temples tonight.
Quote:
Sometimes we have to deal with the fact that life doesn't always go our way.
Wanted to add this post as my headache has subsided. Yeah. Hope it stays that way. Just a dull area on my right side. I looked up my symptoms and decided what I had was a cluster headache. The pain behind the eyes was the determinator. Mainly on one side. Mine was on the right side. Bill and I were talking about reasons that could have caused these excruciating headaches. Could it have been the Kyprolis and the Darzalex together. Off Kyrpolis this week. Could it have been caused by the extra 20 mg of Dex. And stopped because my Dex was a relief drug for the headaches. The sedafed worked. Whatever helped, thanks.
Went to bed around 1:30 AM and was up around 3 AM. Steroids messing with my sleep. Couldn't go back to sleep so stayed up until 4:30 AM. Then I slept from 4:30 AM till about 7:30 AM. Got in to a panic situations because I thought I had to get ready for my Kyprolis drip. Duh, off the Kyprolis this week.
Michelle and I have been planning a yard sale for a few weeks now. Last Saturday was to be the official day. I just wasn't up to it. Going to try for this Saturday. Hope no headaches and no rain.
When Kerri heard about my headaches she asked me I had any of the oil left that she sent me 2 years ago called Past Tense. It's for headaches. Just rub in your temples and across your forehead. Don't remember it. So started going through a place where I would have put it. Nothing. Could still be in one of the suitcases when we went out to see Kerri and family. Kerri remembers that she had sent some to my address here and I took it to Moffitt. I found nothing. Kerri sent more. I am sure one of these days I will found more. Thanks Bear. Will be putting on my temples tonight.
Quote:
Sometimes we have to deal with the fact that life doesn't always go our way.
Tuesday, June 12, 2018
ETFF
Last night was our support group meeting. Speaker was Dr. Rudy. He was knowledgable on the subject of Myeloma. We had our annual summer picnic. Everyone brought a covered dish. Was really good. Ken had mentioned to someone at the annual IMF (Internal Myeloma Foundation) meeting that it would be nice to have the doctors sign a baseball hat and raffle it off. Someone ran with it and they are raffling it off. Here is the link for information about this raffle. Great organization to support. Also, if you scroll down to the bottom of the link, you will a picture of our support group, me and Bill included.
http://give.myeloma.org/site/TR?fr_id=1600&pg=entry#.WyBwXGaZPVq
Today was my 4th treatment of Darzalex. No Kyprolis this week but still the Dex. Took my 5 pills of Dex to get ready for the treatment. Got to the Cancer Center about 8:15 for my 8:30 start time. First taken to the draw station for labs. Had Ellen again. Her and I have become closer because her mother in law was a neighbor of mom's at Savannah Court. She has since been moved because dementia had set in. When mom first moved in there, Millie and her did a lot together.
Port accessed, three tubes of blood drawn and sent back to room 17 with Meredith as my nurse. Did recognize her but don't remember having her as my nurse during any treatments. Got me a warm blanket, asked some questions and left to wait on my lab results to come back. They did and around 9:30 gave me my premeds of Tylenol, Benedrayl and the drip of 20 mg of Dex. Waited for Darzalex to be mixed. Started that drip around 10:30. I was out shortly after it was started. Had to have my blood pressure taken every 1/2 hour when she upped the ml from 25 to 50 to 75 to 100 to 150 to 200. We finished up around 3:15. So just a little over 4 1/2 hours this week for the drip. 7 hours total.
When Meredith asked me how things were going before anything started, I told her about the headaches. They just won't quit. Been going on for over a week. Told her I had talked to the pharmacist yesterday at Costco. She recommended to try sedafed altering checking the net to see if any information stating not to be taken with Darzalex. I took one but didn't help much so took Aleve even though I am not suppose to because my platelets, red blood cells and white blood cells are low. It helped get me through my support meeting with just a dull headache.
Woke up with the headache again. Mainly around my temples, my sinuses, just above my eyes and horrible pressure behind my eyes. So about 3/4 through my treatment today, the headache was becoming worse. I talked again with Meredith about these headaches and asked if they could get me something for it. She was able to get me more Tylenol. Not much help. She also contacted Dr. Sarriera's office. I had told Abby about these headaches at my Friday's visit so she was aware of them. Told me to take the sudafed. If no relief after a few days, gave me a list of 3 other drugs she will try me on. One more over the counter and two prescriptions. Just please one work. I was never one to get headaches and now I am not doing well with them. Just something work please. Hard being myself with my head pounding. So just something work. It's there as I write my blog but need to get this all down in words. Please something work.
Thank you all for your prayers, cards, phone calls (talked with Louise and Judy for 2 hours or more), texts, comments on my blog and on FB. I appreciate them all more than you know. This appreciation is from ETFF. Everyone's Trusted Florida Friend. That's the first part of my license plate.
Quote:
May you find the strength to face tomorrow in the love that surrounds you today.
Last night was our support group meeting. Speaker was Dr. Rudy. He was knowledgable on the subject of Myeloma. We had our annual summer picnic. Everyone brought a covered dish. Was really good. Ken had mentioned to someone at the annual IMF (Internal Myeloma Foundation) meeting that it would be nice to have the doctors sign a baseball hat and raffle it off. Someone ran with it and they are raffling it off. Here is the link for information about this raffle. Great organization to support. Also, if you scroll down to the bottom of the link, you will a picture of our support group, me and Bill included.
http://give.myeloma.org/site/TR?fr_id=1600&pg=entry#.WyBwXGaZPVq
Today was my 4th treatment of Darzalex. No Kyprolis this week but still the Dex. Took my 5 pills of Dex to get ready for the treatment. Got to the Cancer Center about 8:15 for my 8:30 start time. First taken to the draw station for labs. Had Ellen again. Her and I have become closer because her mother in law was a neighbor of mom's at Savannah Court. She has since been moved because dementia had set in. When mom first moved in there, Millie and her did a lot together.
Port accessed, three tubes of blood drawn and sent back to room 17 with Meredith as my nurse. Did recognize her but don't remember having her as my nurse during any treatments. Got me a warm blanket, asked some questions and left to wait on my lab results to come back. They did and around 9:30 gave me my premeds of Tylenol, Benedrayl and the drip of 20 mg of Dex. Waited for Darzalex to be mixed. Started that drip around 10:30. I was out shortly after it was started. Had to have my blood pressure taken every 1/2 hour when she upped the ml from 25 to 50 to 75 to 100 to 150 to 200. We finished up around 3:15. So just a little over 4 1/2 hours this week for the drip. 7 hours total.
When Meredith asked me how things were going before anything started, I told her about the headaches. They just won't quit. Been going on for over a week. Told her I had talked to the pharmacist yesterday at Costco. She recommended to try sedafed altering checking the net to see if any information stating not to be taken with Darzalex. I took one but didn't help much so took Aleve even though I am not suppose to because my platelets, red blood cells and white blood cells are low. It helped get me through my support meeting with just a dull headache.
Woke up with the headache again. Mainly around my temples, my sinuses, just above my eyes and horrible pressure behind my eyes. So about 3/4 through my treatment today, the headache was becoming worse. I talked again with Meredith about these headaches and asked if they could get me something for it. She was able to get me more Tylenol. Not much help. She also contacted Dr. Sarriera's office. I had told Abby about these headaches at my Friday's visit so she was aware of them. Told me to take the sudafed. If no relief after a few days, gave me a list of 3 other drugs she will try me on. One more over the counter and two prescriptions. Just please one work. I was never one to get headaches and now I am not doing well with them. Just something work please. Hard being myself with my head pounding. So just something work. It's there as I write my blog but need to get this all down in words. Please something work.
Thank you all for your prayers, cards, phone calls (talked with Louise and Judy for 2 hours or more), texts, comments on my blog and on FB. I appreciate them all more than you know. This appreciation is from ETFF. Everyone's Trusted Florida Friend. That's the first part of my license plate.
Quote:
May you find the strength to face tomorrow in the love that surrounds you today.
Sunday, June 10, 2018
Curious?
A few side effects from the Darzlex, Dex or Kyproylis. The headaches are dull and the headaches are severe. I was never one to have headaches. They bring me down. Tylenol doesn't help much. Aleve helps some. Another side effect usually starts on Sunday. I feel like my body is bruised when I touch it. Arms, legs, back, stomach, head. And the fatigue is real.
Had my check up with Dr. Sarriera on Friday. Abby came in first. Been awhile since we have seen her. She is so full of knowledge. We discussed the labs results. Asked her if there was anyway we could downsize the amount of Dex I am taking on Tuesdays. I take my 40 mg tablets and then another 20 mg intravenously. Would discuss it with Dr. Sarriera. Myeloma labs look good. We figured out it was only after one week of Darzalex. Wasn't really to have the Myeloma labs done but I was the one that said I was to have them. Oh, well. Abby contacted the radiology department to get a disc burned of my Pet Scan for me to take to Moffitt.
Abby left and came back with Dr. Sarriera. He was happy with the labs too. We are going to cut the Dex down by 20 mg. I will only take 5 pills (20 mg) and they will give me 20 mg during my treatment of Darzalex. Hopefully this will take care of some of my side effects especially the headaches. Dr. Sarriera wants to see me again in 4 weeks. Then he will schedule another Pet Scan.
Five more weeks of Darzalex to finish my first 8 weeks.
I get lots of text, cards, phone calls. Words of encouragement, prayers all needed. And I thank you all for them. This one was an IM from Jean McKee. Just hit me and I needed to share. Thanks Jean!
"Dear Kathy, what an inspiration you are to so many people!
God has used you in so many ways, you give the suffering hope by your positive attitude even though you are suffering yourself. You certainly make me feel that life is fragile and I should be thankful for each day and that my problems are minor compared to others!
Despite all the fears and suffering you and Bill are going through...you are a blessing to others and I love you for that.
Whatever comes of all this... I know God has a special place reserved for you in heaven someday!
In the meantime, I'm praying that all your treatments get less stressful and more successful. Enjoy the hard work that Bill & your neighbor has been putting into your nice looking backyard and that warm FL weather that I'm so jealous of!!
I've been working in my yard between downpours everyday these past few weeks!
Keep up those lovely smiles that keep us all smiling!!
😀😘❤️❤️"
As Bill and I travel to the Cancer Center we see a lot of deconstruction, construction. Always building somewhere. Always tearing down something. So we have been watching this building they tore down and now something is being built. Been going on for several months. I keep saying, "I wondering what they are building?" Well, earlier this week a sign went up. Says, "Are you curious yet?" Love it.
Quote:
When I feel inadequate or discouraged, hold my hand Lord and give me strength to keep going.
A few side effects from the Darzlex, Dex or Kyproylis. The headaches are dull and the headaches are severe. I was never one to have headaches. They bring me down. Tylenol doesn't help much. Aleve helps some. Another side effect usually starts on Sunday. I feel like my body is bruised when I touch it. Arms, legs, back, stomach, head. And the fatigue is real.
Had my check up with Dr. Sarriera on Friday. Abby came in first. Been awhile since we have seen her. She is so full of knowledge. We discussed the labs results. Asked her if there was anyway we could downsize the amount of Dex I am taking on Tuesdays. I take my 40 mg tablets and then another 20 mg intravenously. Would discuss it with Dr. Sarriera. Myeloma labs look good. We figured out it was only after one week of Darzalex. Wasn't really to have the Myeloma labs done but I was the one that said I was to have them. Oh, well. Abby contacted the radiology department to get a disc burned of my Pet Scan for me to take to Moffitt.
Abby left and came back with Dr. Sarriera. He was happy with the labs too. We are going to cut the Dex down by 20 mg. I will only take 5 pills (20 mg) and they will give me 20 mg during my treatment of Darzalex. Hopefully this will take care of some of my side effects especially the headaches. Dr. Sarriera wants to see me again in 4 weeks. Then he will schedule another Pet Scan.
Five more weeks of Darzalex to finish my first 8 weeks.
I get lots of text, cards, phone calls. Words of encouragement, prayers all needed. And I thank you all for them. This one was an IM from Jean McKee. Just hit me and I needed to share. Thanks Jean!
"Dear Kathy, what an inspiration you are to so many people!
God has used you in so many ways, you give the suffering hope by your positive attitude even though you are suffering yourself. You certainly make me feel that life is fragile and I should be thankful for each day and that my problems are minor compared to others!
Despite all the fears and suffering you and Bill are going through...you are a blessing to others and I love you for that.
Whatever comes of all this... I know God has a special place reserved for you in heaven someday!
In the meantime, I'm praying that all your treatments get less stressful and more successful. Enjoy the hard work that Bill & your neighbor has been putting into your nice looking backyard and that warm FL weather that I'm so jealous of!!
I've been working in my yard between downpours everyday these past few weeks!
Keep up those lovely smiles that keep us all smiling!!
😀😘❤️❤️"
As Bill and I travel to the Cancer Center we see a lot of deconstruction, construction. Always building somewhere. Always tearing down something. So we have been watching this building they tore down and now something is being built. Been going on for several months. I keep saying, "I wondering what they are building?" Well, earlier this week a sign went up. Says, "Are you curious yet?" Love it.
Quote:
When I feel inadequate or discouraged, hold my hand Lord and give me strength to keep going.
Tuesday, June 5, 2018
Hair.
Today, Tuesday June 5th was my third infusion of Darzalex along with my Kyprolis and Dex. We left the house at 7 for my 8 AM appointment. Took me right back to the room with Kelley. She did all the set up for my day. Took blood pressure (up but that stands to reason), temperature and pulse. Then accessed my port. Had some trouble getting blood for labs. That has only happened one other time. Kelley had me look to the right and take several deep breaths. Nothing happening. She then had me looked to the left and breathe. Again nothing. Reflushed. Nope. Then she had me lie down and raise my left arm. Okay, nope. Rolled over to my right side while laying down. Okay, this worked. Drew for labs and sent to be tested. Now we wait. Labs back. Bilirubin up. Contact doctor. Wait.
Came back to go ahead. Take my 40 mg Dex. Another 20 mg Dex through port. 1200 mg of Tylenol and Benadryl orally. And within about 20 minutes I am dozing. Started the 15 minute Kyprolis drip. Waited another 15 minutes and started the Darzalex. But when the bag of Darzalex came out, Bill questioned the size of the bag. Only look half of what it was last week. Kelley and another nurse worked with the lab to understand why. I hope I get this right. The mixture this week was more concentrated. Same dosage but liquid amount was not as much. That, apparently, is the protocol of this treatment week by week. I know I dozed off and Bill handled it. Also, he won $10 play money to use at the Cancer Center. I was sleeping. Something to do with emails being down and taking a while to hear from doctor to get stuff rolling. He told me to go back to sleep to see if he could win more. I did. He didn't! I slept through most of the treatment. Kelley had to take vitals every hour so woke up when that was happening. We were actually done around 3:30 this week. So from 8 -3:30 from start of day to finish. 8:30-6:30 the second week and 8-11 PM the first week. Really cutting the time down. Next week I am going to ask what the least amount of time that I can expect bearing no reactions.
Only 5 more weeks of treatments of the Darzalax, Kyprolis and Dex. Then I go to every other week for 8 more treatments and then once a month. The Kyprolis and Dex will continue on with the 3 weeks on and one week off. However, the Dex with be a continual weekly one.
We now watch for any side effects again. Hopefully they will be minor.
Bill and I went to an event held by Orlando Health Cancer Center on Sunday. Picnic in the Park for national cancer survivors day. This was held at Leu Gardens in Orlando. What an uplifting few hours. There were chair massages, healing touch area, photo booth, a few crafts to do, Orlando pet therapy dogs. They provided us with a box lunch and sat us in a comfy room. There were several speakers including several doctors from our hospital. Then we had "open mic". And I braved my self up to the podium. There were over 100 persons and I did it. Yeah, me. Didn't speak long but I did it.
A chemo patient woke up and looked at her hair. She had 3 hairs left on her head. Oh, I think I will braid them today. Next day when she woke up, she had 2 hairs left on her head. Oh, I think I will part them done the middle today. Next day she only had 1 hair on her head. Oh, I think I will put it in a pony tail today. Next day she woke up to no hair on her head. She just nodded her head and said, "now I don't have to worry about doing my hair for a while." This was told by a lady that sat at the table with us. Second time breast cancer. What a jolly, upbeat lady.
Quote:
Find some beauty in your situation. You won't be the person you were before cancer and that is not a bad thing.
Today, Tuesday June 5th was my third infusion of Darzalex along with my Kyprolis and Dex. We left the house at 7 for my 8 AM appointment. Took me right back to the room with Kelley. She did all the set up for my day. Took blood pressure (up but that stands to reason), temperature and pulse. Then accessed my port. Had some trouble getting blood for labs. That has only happened one other time. Kelley had me look to the right and take several deep breaths. Nothing happening. She then had me looked to the left and breathe. Again nothing. Reflushed. Nope. Then she had me lie down and raise my left arm. Okay, nope. Rolled over to my right side while laying down. Okay, this worked. Drew for labs and sent to be tested. Now we wait. Labs back. Bilirubin up. Contact doctor. Wait.
Came back to go ahead. Take my 40 mg Dex. Another 20 mg Dex through port. 1200 mg of Tylenol and Benadryl orally. And within about 20 minutes I am dozing. Started the 15 minute Kyprolis drip. Waited another 15 minutes and started the Darzalex. But when the bag of Darzalex came out, Bill questioned the size of the bag. Only look half of what it was last week. Kelley and another nurse worked with the lab to understand why. I hope I get this right. The mixture this week was more concentrated. Same dosage but liquid amount was not as much. That, apparently, is the protocol of this treatment week by week. I know I dozed off and Bill handled it. Also, he won $10 play money to use at the Cancer Center. I was sleeping. Something to do with emails being down and taking a while to hear from doctor to get stuff rolling. He told me to go back to sleep to see if he could win more. I did. He didn't! I slept through most of the treatment. Kelley had to take vitals every hour so woke up when that was happening. We were actually done around 3:30 this week. So from 8 -3:30 from start of day to finish. 8:30-6:30 the second week and 8-11 PM the first week. Really cutting the time down. Next week I am going to ask what the least amount of time that I can expect bearing no reactions.
Only 5 more weeks of treatments of the Darzalax, Kyprolis and Dex. Then I go to every other week for 8 more treatments and then once a month. The Kyprolis and Dex will continue on with the 3 weeks on and one week off. However, the Dex with be a continual weekly one.
We now watch for any side effects again. Hopefully they will be minor.
Bill and I went to an event held by Orlando Health Cancer Center on Sunday. Picnic in the Park for national cancer survivors day. This was held at Leu Gardens in Orlando. What an uplifting few hours. There were chair massages, healing touch area, photo booth, a few crafts to do, Orlando pet therapy dogs. They provided us with a box lunch and sat us in a comfy room. There were several speakers including several doctors from our hospital. Then we had "open mic". And I braved my self up to the podium. There were over 100 persons and I did it. Yeah, me. Didn't speak long but I did it.
A chemo patient woke up and looked at her hair. She had 3 hairs left on her head. Oh, I think I will braid them today. Next day when she woke up, she had 2 hairs left on her head. Oh, I think I will part them done the middle today. Next day she only had 1 hair on her head. Oh, I think I will put it in a pony tail today. Next day she woke up to no hair on her head. She just nodded her head and said, "now I don't have to worry about doing my hair for a while." This was told by a lady that sat at the table with us. Second time breast cancer. What a jolly, upbeat lady.
Quote:
Find some beauty in your situation. You won't be the person you were before cancer and that is not a bad thing.
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