Cold water.
Tomorrow will be day 1, week 2 of cycle 3. Will have extra labs drawn for Myeloma testing. These labs are done one week before my appointment with Dr. Sarriera. That way all the results will be back for our appointment. Also, doing a 24 hour collection for that visit. TMI?? Sorry. Need to keep it all together so I can remember when. Appointment with Dr. Sarriera is next Tuesday, Nov 7th. What November already???
Had a not so good weekend. Tuesday started with me being up till 2 AM, sleeping a few hours and up again. Wednesday we were in and out of the Cancer Center really quick. No labs and till I got my port lines in, my Kyprolis was on it's way from the pharmacy. Wednesday night was pretty much the same as far as wide awake till AM hours. Then comes Thursday. Still a bit wired but feeling the steroids are wearing off. Was able to go with Michelle to play bingo. Michelle won a game!
Then comes my Friday. Chemo now kicking in. So very tired. No energy. Naps are what I need and what I take. Picked up mom and met Kristi, Matt, Sasha and Ellie for a belated birthday dinner for Matt. Very good choice of restaurants. Was able to keep awake for dinner. :) Saturday was pretty much the same. Not as tired but again not much energy. Pushed myself through the day. Napping again. Felt down a lot of the day. Started with a pain in my left hip on Thursday that continued off and on Friday and Saturday. Not sure what that was??? Sunday energy level was better.
Now I get to start all this all over again. 10 steroids in the morning along with my 2 meds and 3 vitamins. 2 more meds at 3 and 2 more at 8. Then the 11 chemo meds around 10:30 tomorrow night. Hence, my 30 Tuesday meds. Up most of the night Tuesday and Wednesday. Thursday somewhat wired, Friday and Saturday fatigued, Sunday some energy, Monday more energy and start over again. Over and over. Till when???
Weather has turned a bit cold in FL. I think this morning it was 46. And to be cold for a few more days. One thing in FL that you have is warm water coming out of the spigots even when you only have the cold faucet turned on. Gets confusing to non Floridians. Well this morning, we actually had cold water coming out of the faucet. Really cold water. Had to call Sandy and tell her. Cold or hot, I love Florida!!!!
Quote:
Laughter is the sound of our soul dancing.
(Thanks Louise)
Monday, October 30, 2017
Tuesday, October 24, 2017
Did you take Kathy to the vets office today?
First - We have had our special, special and did I say special friends visiting with us for the last 6 days? What a wonderful, fun loving, laughing, crying, sharing, some drinking and much, much needed visit. Louise and Bob came to visit. We have not seen them since June 2016. This was before I was even diagnosed with Multiple Myeloma. It was there but we had no idea!! So again, I say, this was a much, much, much needed visit. We ate out a few times, ordered pizza and wings, went to the beach, floated in the pool, sat on the porch talking and they had a few drinks (they as Bill, Bob and Louise. Okay, I had one or two half drinks), shared some time with Michelle and Gery, had Ellie one day as she didn't have school, visited with Kristi, Sasha, Ellie, Chloe, Gracie, Sunshine, Millie and Emma, Matt had to leave for meetings for Spirit so didn't see him, chased frogs, drove by Pulse, watch a few Yankee games (:, talked, talked, talked and talked.
Today was very hard saying good bye when we dropped Louise and Bob off at the airport. So very hard for me anytime we drop any of our friends or family off at the airport or say goodbye in our driveway. I know I am a very, very strong person. I know I am a very determined person to beat my cancer. But I also know I will always have Myeloma lurking around in my bone marrow. I know Myeloma is treatable but not curable. I know. I know. I know. But knowing this makes me cry because I think in my mind that I may never see these people again. I try to not let them see me cry as they are leaving. I share this with Bill as we or they drive away. As I am trying not to let you see my tears now as you all read this part of my blog. This is something I need to express. Just want to share my feelings tonight. Just needed to share my feelings tonight. Just need to cry a bit more. Now will wipe away those tears so I can see to type the rest of this day's happenings. Thanks for letting me cry. Thanks for understanding this is something I will always feel no matter what.
Cycle 3, week 1, day 1 started today. I took my 10 steroids this morning along with my other 5 meds and vitamins. Left after taking Louise and Bob to the airport for the Cancer Center. Got there around 12:15. Took me back within 5 minutes to put my lines in my port and draw labs. Then right back to my room. And then the wait started. Took a bit for the labs to come back. Bilirubin was up again. So the wait for the go ahead from Dr. Sarriera to have the Kyprolis drip mixed and administered. That took a bit . I told my oncology nurse, it was Maggie today, the reason was because Desiree wasn't there. :). Maggie did start a bag of fluids. Usually this drips about 5 minutes before the chemo drip but today she started it for 15 minutes and mentioned it would stop and once the Kyprolis was ready and dripped, she would set the fluids for another 15 minutes. Questioned her on this because was different and she said it was ordered by Dr. Sarriera. Guess he wanted me to have more fluids. I will ask him about this at my November appointment. Note to self - add this question to my Sarriera notes on my phone. Finally done around 3:30. My long day! Tuesday is always my long day. They did give us lunch. Ended the day with an invite from Michelle and Gery to have dinner with them. Gery made Sheppard's pie. First time for us. Loved it.
Now I am wide awake from the steroids. 10:15. Waiting to take my 11 Cyclophosphamide (got that one Louise?) chemo pill at 10:30. This will make my total 30 pills on Tuesdays now that I added a new supplement of Turmeric.
Today had a few first for us. We actually saw an alligator floating in Lake Jesup when we were crossing the over the bridge and about the same time an eagle flew down to get a fish. This was shortly after dropping Louise and Bob off. Beautiful sights. Beautiful signs from above.
During the time we were waiting on the drip, I got some water coloring painting relaxing therapy. The volunteer, Valerie, was working with another patient and come over and asked if I would be interested in a quick lesson in painting with water colors. Sure, not going anywhere for a bit. We did a small, probably 8 1/2 X 11, painting of some flowers. Not so bad. I do think I will frame this one. Wish I could figure out how to post pictures on here. Kristi!!!!!! Then I had a visitor. Me. Someone other then the receptionists and my oncology nurses and Bill knows me. Pat, the wife of our HOA (Home Owners Association for Deer Run) president works at the Cancer Center. She was on her lunch break, remembered that I had treatments on Tuesdays and Wednesdays and came from her office to say hi and see how I was doing. Very thoughtful and very nice. Much appreciated.
Also, while waiting on the drip and working on the painting, we had 5 therapy dogs visited our rooms. They were dressed in their Halloween customs. (11 chemo pills down). Big dogs, little dogs. So dang cute, so loving and very quiet. Their trainers are wonderful too. They talk with you, caring about your reason for being there. So Bill is sending pictures of these dogs to Kristi, Kerri and of course our dog loving Gery. Kristi and Kerri respond with so cute, so nice, wonderful. Gery also commented on them being cute, wonderful and then asked Bill "Did you take Kathy to the vets office today instead of the Cancer Center?" What a good laugh! Thanks Gery.
Quote:
You gain strength, you gain courage and you gain confidence by every experience when you stop to look fear in the face.
First - We have had our special, special and did I say special friends visiting with us for the last 6 days? What a wonderful, fun loving, laughing, crying, sharing, some drinking and much, much needed visit. Louise and Bob came to visit. We have not seen them since June 2016. This was before I was even diagnosed with Multiple Myeloma. It was there but we had no idea!! So again, I say, this was a much, much, much needed visit. We ate out a few times, ordered pizza and wings, went to the beach, floated in the pool, sat on the porch talking and they had a few drinks (they as Bill, Bob and Louise. Okay, I had one or two half drinks), shared some time with Michelle and Gery, had Ellie one day as she didn't have school, visited with Kristi, Sasha, Ellie, Chloe, Gracie, Sunshine, Millie and Emma, Matt had to leave for meetings for Spirit so didn't see him, chased frogs, drove by Pulse, watch a few Yankee games (:, talked, talked, talked and talked.
Today was very hard saying good bye when we dropped Louise and Bob off at the airport. So very hard for me anytime we drop any of our friends or family off at the airport or say goodbye in our driveway. I know I am a very, very strong person. I know I am a very determined person to beat my cancer. But I also know I will always have Myeloma lurking around in my bone marrow. I know Myeloma is treatable but not curable. I know. I know. I know. But knowing this makes me cry because I think in my mind that I may never see these people again. I try to not let them see me cry as they are leaving. I share this with Bill as we or they drive away. As I am trying not to let you see my tears now as you all read this part of my blog. This is something I need to express. Just want to share my feelings tonight. Just needed to share my feelings tonight. Just need to cry a bit more. Now will wipe away those tears so I can see to type the rest of this day's happenings. Thanks for letting me cry. Thanks for understanding this is something I will always feel no matter what.
Cycle 3, week 1, day 1 started today. I took my 10 steroids this morning along with my other 5 meds and vitamins. Left after taking Louise and Bob to the airport for the Cancer Center. Got there around 12:15. Took me back within 5 minutes to put my lines in my port and draw labs. Then right back to my room. And then the wait started. Took a bit for the labs to come back. Bilirubin was up again. So the wait for the go ahead from Dr. Sarriera to have the Kyprolis drip mixed and administered. That took a bit . I told my oncology nurse, it was Maggie today, the reason was because Desiree wasn't there. :). Maggie did start a bag of fluids. Usually this drips about 5 minutes before the chemo drip but today she started it for 15 minutes and mentioned it would stop and once the Kyprolis was ready and dripped, she would set the fluids for another 15 minutes. Questioned her on this because was different and she said it was ordered by Dr. Sarriera. Guess he wanted me to have more fluids. I will ask him about this at my November appointment. Note to self - add this question to my Sarriera notes on my phone. Finally done around 3:30. My long day! Tuesday is always my long day. They did give us lunch. Ended the day with an invite from Michelle and Gery to have dinner with them. Gery made Sheppard's pie. First time for us. Loved it.
Now I am wide awake from the steroids. 10:15. Waiting to take my 11 Cyclophosphamide (got that one Louise?) chemo pill at 10:30. This will make my total 30 pills on Tuesdays now that I added a new supplement of Turmeric.
Today had a few first for us. We actually saw an alligator floating in Lake Jesup when we were crossing the over the bridge and about the same time an eagle flew down to get a fish. This was shortly after dropping Louise and Bob off. Beautiful sights. Beautiful signs from above.
During the time we were waiting on the drip, I got some water coloring painting relaxing therapy. The volunteer, Valerie, was working with another patient and come over and asked if I would be interested in a quick lesson in painting with water colors. Sure, not going anywhere for a bit. We did a small, probably 8 1/2 X 11, painting of some flowers. Not so bad. I do think I will frame this one. Wish I could figure out how to post pictures on here. Kristi!!!!!! Then I had a visitor. Me. Someone other then the receptionists and my oncology nurses and Bill knows me. Pat, the wife of our HOA (Home Owners Association for Deer Run) president works at the Cancer Center. She was on her lunch break, remembered that I had treatments on Tuesdays and Wednesdays and came from her office to say hi and see how I was doing. Very thoughtful and very nice. Much appreciated.
Also, while waiting on the drip and working on the painting, we had 5 therapy dogs visited our rooms. They were dressed in their Halloween customs. (11 chemo pills down). Big dogs, little dogs. So dang cute, so loving and very quiet. Their trainers are wonderful too. They talk with you, caring about your reason for being there. So Bill is sending pictures of these dogs to Kristi, Kerri and of course our dog loving Gery. Kristi and Kerri respond with so cute, so nice, wonderful. Gery also commented on them being cute, wonderful and then asked Bill "Did you take Kathy to the vets office today instead of the Cancer Center?" What a good laugh! Thanks Gery.
Quote:
You gain strength, you gain courage and you gain confidence by every experience when you stop to look fear in the face.
Wednesday, October 18, 2017
Chatty Kathy
Just a quick update. I finished my cycle 2 last week and have off until October 24. Only have to take my steroids and regular meds. Took the steroids yesterday and that is why I am still up. It's 12:45. Last night I went to bed at 1, was up around 4, slept from 7 until about 8. Been up ever since. Sure hope they keep me up a bit tomorrow night. BECAUSE Louise and Bob will be here. We pick them up around 7 PM tonight. Will be here until the 24th. Yippee!!! So much a needed visit for the 4 of us.
Other then the insomnia, I have a rash but nothing bothersome. It's funny because it starts on my chin first, then moves up the cheek, to my nose. Then eventually goes to my chest and neck areas. A little on my arms but seems to stop there. And of course the steroids make me a little aggravated, anxious, talk a lot and sometimes could cry for no reason. Have been able to hold back the tears but sure there will be some flowing tonight. BECAUE Louise and Bob will be here!!!!!
May not be posting for a bit unless there is change in anything with me. Don't see that happening. BECAUSE Louise and Bob will be here!!!
Michelle came over last night to say hi to Mom. Well, she got to see the steroid can't shut up day. Blah, Blah, blah, blah. LOL. So we decide to call me Chatty Kathy. Do you remember that doll? Was the last doll I ever got. She was spelled with a C though. Mag pies will be our names soon. BECAUSE Louise and Bob will be here.
Quote:
Wherever you go, no matter what the weather, bring your own sunshine.
Just a quick update. I finished my cycle 2 last week and have off until October 24. Only have to take my steroids and regular meds. Took the steroids yesterday and that is why I am still up. It's 12:45. Last night I went to bed at 1, was up around 4, slept from 7 until about 8. Been up ever since. Sure hope they keep me up a bit tomorrow night. BECAUSE Louise and Bob will be here. We pick them up around 7 PM tonight. Will be here until the 24th. Yippee!!! So much a needed visit for the 4 of us.
Other then the insomnia, I have a rash but nothing bothersome. It's funny because it starts on my chin first, then moves up the cheek, to my nose. Then eventually goes to my chest and neck areas. A little on my arms but seems to stop there. And of course the steroids make me a little aggravated, anxious, talk a lot and sometimes could cry for no reason. Have been able to hold back the tears but sure there will be some flowing tonight. BECAUE Louise and Bob will be here!!!!!
May not be posting for a bit unless there is change in anything with me. Don't see that happening. BECAUSE Louise and Bob will be here!!!
Michelle came over last night to say hi to Mom. Well, she got to see the steroid can't shut up day. Blah, Blah, blah, blah. LOL. So we decide to call me Chatty Kathy. Do you remember that doll? Was the last doll I ever got. She was spelled with a C though. Mag pies will be our names soon. BECAUSE Louise and Bob will be here.
Quote:
Wherever you go, no matter what the weather, bring your own sunshine.
Wednesday, October 11, 2017
Love you, mom! xoxo
Cycle 2, week 3, day 2 ends my cycle 2. Makes sense right? So I am done with another cycle. Made it through 2 cycles which is so great. Minor side effects from my chemo drip and chemo drugs and Dex. Some rashes but nothing major. Nothing that itches. Just looks like I was out in the sun. Some insomnia. Hungry and could eat everything in sight. Like at the homecoming parade tonight. Not hungry. Can't eat much, if anything. Slight headache after day1 into morning of day 2. Sweats that leave clothes soaked lasting day 1 and a bit in to day 2. Then the fatigue sets in Fridays, Saturdays and part of Sundays. Know pretty much what happens on my days after these first 2 cycles. Off now for 13 days except for the Dex. Nice break.
Yesterday when I had my lines put in my port for my normal labs and drip, I noticed the nurse was drawing more than three tubes of blood. When I questioned her, she said she was doing the Multiple Myeloma follow up ordered by Dr. Sarriera. I was talking to the aid and hadn't paid attention to what she was doing at first. I told her that order was for three weeks from now. She continued and didn't listen or recheck the order. I contacted Ketty (she is filling in for Desiree) and I was correct, there wasn't to be another MM draw till 3 weeks. Just didn't read the order correctly. My own advocate. I know my schedule of labs and no labs.
Today was really a fast day. Was longer in the room to have my lines put in than in the drip room. Till they got the lines in, I was assigned a room. Got Bill from the waiting room and headed back to room 7. My Kyprolis was already waiting for me. Tammy (she is so nice) hooked me up and done with the drip, the flush of saline and Heparin and out of there. See you in 13 days.
Love you, mom! xoxo This is something I will never get tired of seeing texted to me. This time from my Kerri about 30 minutes ago. Love you too Bear.
Quote:
Cancer can touch you, but not your soul, neither your thoughts, nor your heart.
Cycle 2, week 3, day 2 ends my cycle 2. Makes sense right? So I am done with another cycle. Made it through 2 cycles which is so great. Minor side effects from my chemo drip and chemo drugs and Dex. Some rashes but nothing major. Nothing that itches. Just looks like I was out in the sun. Some insomnia. Hungry and could eat everything in sight. Like at the homecoming parade tonight. Not hungry. Can't eat much, if anything. Slight headache after day1 into morning of day 2. Sweats that leave clothes soaked lasting day 1 and a bit in to day 2. Then the fatigue sets in Fridays, Saturdays and part of Sundays. Know pretty much what happens on my days after these first 2 cycles. Off now for 13 days except for the Dex. Nice break.
Yesterday when I had my lines put in my port for my normal labs and drip, I noticed the nurse was drawing more than three tubes of blood. When I questioned her, she said she was doing the Multiple Myeloma follow up ordered by Dr. Sarriera. I was talking to the aid and hadn't paid attention to what she was doing at first. I told her that order was for three weeks from now. She continued and didn't listen or recheck the order. I contacted Ketty (she is filling in for Desiree) and I was correct, there wasn't to be another MM draw till 3 weeks. Just didn't read the order correctly. My own advocate. I know my schedule of labs and no labs.
Today was really a fast day. Was longer in the room to have my lines put in than in the drip room. Till they got the lines in, I was assigned a room. Got Bill from the waiting room and headed back to room 7. My Kyprolis was already waiting for me. Tammy (she is so nice) hooked me up and done with the drip, the flush of saline and Heparin and out of there. See you in 13 days.
Love you, mom! xoxo This is something I will never get tired of seeing texted to me. This time from my Kerri about 30 minutes ago. Love you too Bear.
Quote:
Cancer can touch you, but not your soul, neither your thoughts, nor your heart.
Tuesday, October 10, 2017
Ruby and Rex!
Wonderful, wonderful, wonderful news today. Met with Dr. Sarriera before my chemo drip. Walked out of his office with smiles on our faces, hope in our hearts, fear beat down some, knowing prayers answered, just happy!!! Dr. Sarriera review all my labs with us and they are great. No, let me repeat, no measurable Myeloma present. It's so minute. So again I say, no measurable Myeloma present. M-spike at 0. No monoclonal bands detected (abnormal protein in my blood). Free light chain (antibodies produce by normal plasma cells) ratio is at a perfect value. My IgM, IgA and IgG all are low but that is cause by my chemo meds. (These are all types of antibodies in your blood). Good, great, wonderful. I did see one thing on my lab test that concerned me that I asked him about. It was listed under a test called SPEP (Serum Protein Eletrophoresis). This is a test that measures specific proteins in the blood to help identify some diseases. It was a test that said Protein Impression. The comments stated Hypogammaglobulinemia. What??? Dr. Sarriera was not concerned at all even though the previous two months the comment said "normal protein electrophoresis pattern. He said that this is something because of my low IgM, IgA and IgG. Again, low cause by my chemo meds.
I am due for my next set of immunizations soon. Also, due for skeletal X-rays, mammogram, and ugh, 24 hour urine analysis. All being scheduled soon. He examined my head. We feel no other lumps. Know it's working. Dr. Sarriera feels I will not get my hair back where the radiation treatment area was. This is upsetting but a post for some other time. This is a happy post. Discussed my fatigue on Friday and Saturdays after my two days of chemo and Dex. As long as a nap or two helps, it's normal. Also discussed, he will keep me on this for 4 to 6 cycles with a follow up visit with him every four weeks along with the Myeloma lab draws results. Once the cycles are done to his liking, he has a maintenance plan ready to start me on. Maybe, he will say the word remission soon.
Dr. Sarriera congratulated us on great news, shook our hands and started to leave. Then told me that he felt I looked good, reacting good to the plan. Shook our hands again, ready to leave and talked about something else. I genuinely think he was so happy to be able to give us such great news, he didn't want to leave. Finally shook once more and left with a big smile on his face. Leaving Bill and I with smiles too.
And then, in comes Abby with pictures and news of those babies. Desiree and her husband's babies. Ruby and Rex (hope I spelled these right). Gorgeous babies. Loved the pictures. And here is what Abby told us. One weighed 7.5 lbs - 21 inches long and the other weighed almost 7 lbs - 21 inches long. I am saying Rex was the heavier of the two. Hope I got that right. Can not imagine what their weight would have been if Desiree would have gone full term. Oh my!! Can't wait to talk to Desiree about them. All four are doing good.
After seeing the pictures and hearing that Desiree and babies are okay, I remembered a quote that Kristi had (I think it was on a plaque) displayed during her adoption days. So my quote tonight is dedicated to Desiree and husband (need to get his name). Thanks Kristi.
Quote:
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
Wonderful, wonderful, wonderful news today. Met with Dr. Sarriera before my chemo drip. Walked out of his office with smiles on our faces, hope in our hearts, fear beat down some, knowing prayers answered, just happy!!! Dr. Sarriera review all my labs with us and they are great. No, let me repeat, no measurable Myeloma present. It's so minute. So again I say, no measurable Myeloma present. M-spike at 0. No monoclonal bands detected (abnormal protein in my blood). Free light chain (antibodies produce by normal plasma cells) ratio is at a perfect value. My IgM, IgA and IgG all are low but that is cause by my chemo meds. (These are all types of antibodies in your blood). Good, great, wonderful. I did see one thing on my lab test that concerned me that I asked him about. It was listed under a test called SPEP (Serum Protein Eletrophoresis). This is a test that measures specific proteins in the blood to help identify some diseases. It was a test that said Protein Impression. The comments stated Hypogammaglobulinemia. What??? Dr. Sarriera was not concerned at all even though the previous two months the comment said "normal protein electrophoresis pattern. He said that this is something because of my low IgM, IgA and IgG. Again, low cause by my chemo meds.
I am due for my next set of immunizations soon. Also, due for skeletal X-rays, mammogram, and ugh, 24 hour urine analysis. All being scheduled soon. He examined my head. We feel no other lumps. Know it's working. Dr. Sarriera feels I will not get my hair back where the radiation treatment area was. This is upsetting but a post for some other time. This is a happy post. Discussed my fatigue on Friday and Saturdays after my two days of chemo and Dex. As long as a nap or two helps, it's normal. Also discussed, he will keep me on this for 4 to 6 cycles with a follow up visit with him every four weeks along with the Myeloma lab draws results. Once the cycles are done to his liking, he has a maintenance plan ready to start me on. Maybe, he will say the word remission soon.
Dr. Sarriera congratulated us on great news, shook our hands and started to leave. Then told me that he felt I looked good, reacting good to the plan. Shook our hands again, ready to leave and talked about something else. I genuinely think he was so happy to be able to give us such great news, he didn't want to leave. Finally shook once more and left with a big smile on his face. Leaving Bill and I with smiles too.
And then, in comes Abby with pictures and news of those babies. Desiree and her husband's babies. Ruby and Rex (hope I spelled these right). Gorgeous babies. Loved the pictures. And here is what Abby told us. One weighed 7.5 lbs - 21 inches long and the other weighed almost 7 lbs - 21 inches long. I am saying Rex was the heavier of the two. Hope I got that right. Can not imagine what their weight would have been if Desiree would have gone full term. Oh my!! Can't wait to talk to Desiree about them. All four are doing good.
After seeing the pictures and hearing that Desiree and babies are okay, I remembered a quote that Kristi had (I think it was on a plaque) displayed during her adoption days. So my quote tonight is dedicated to Desiree and husband (need to get his name). Thanks Kristi.
Quote:
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
Monday, October 9, 2017
It is my family.
Well, I sure messed up on my cycle count in my previous post. We are going in to Cycle 2, week 3, day 1. That would be tomorrow. Then day 2 on Wednesday. Then I am done with treatments and meds except for regular meds and Dex until October 24th. That would be 13 days off. And that works out so well because we are getting company from PA!!! Company that I have waited for, for quite a while. Company!!! So excited!!! Lots of catching up to do. Can't wait!!!
Tonight was our Myeloma meeting. As always, I leave there so up and so excited about the info we get from the speakers. Tonight was an oncology nurse of 30 years. When she first heard of Myeloma years ago, patients were told we can try this but there's not much we can do for you. This disease is untreatable. Now she, some 30 years later, has seen new drugs introduced, longer survival rates, older drugs like Revlimid and Velcade helping so many Myeloma patients. Can't tolerate Revlimid, Pomalyst, Velcade well there is now Plan B, Plan C, Plan D etc. Myeloma is now treatable but still not curable. There will always be Myeloma cells "lurking" in my blood but my numbers are not measuring them at this time. My treatment plan is working. My treatment plan is pushing me towards remission. My treatment plan is working.
Tomorrow I also have an appointment to see Dr. Sarriera. All my lab tests should be back and from what I am seeing, all looks good again. Just need Dr. Sarriera to verify. Also, I will be able to ask about Desiree. And hopefully see some pictures of those babies.
Arlene. Arlene is Ken's, our founder of the Myeloma support group, second in command. She is an oncology nurse. Has been with the group for a long time. Arlene supports us in so many ways. She very rarely misses a meeting. Is there to decorate the tables, lead the group chat session, get us to sign cards for our members who are sick or lost a family member and keeps Ken in order. Tonight she shared with us how she came about being a part of the group. Sorry but I forget how long ago she began coming to meetings. But think it was from pretty much the beginning 10 years ago. When she was sharing, she got a bit emotional and said this group is like my family. It is my family. And I agree wholeheartedly. This group has become my family. This group has become my treatable part of my Myeloma. This group has become a part of my monthly schedule. This group has become a part of me.
Quote:
You can beat cancer by how you live, why you live and in the manner in which you love.
Well, I sure messed up on my cycle count in my previous post. We are going in to Cycle 2, week 3, day 1. That would be tomorrow. Then day 2 on Wednesday. Then I am done with treatments and meds except for regular meds and Dex until October 24th. That would be 13 days off. And that works out so well because we are getting company from PA!!! Company that I have waited for, for quite a while. Company!!! So excited!!! Lots of catching up to do. Can't wait!!!
Tonight was our Myeloma meeting. As always, I leave there so up and so excited about the info we get from the speakers. Tonight was an oncology nurse of 30 years. When she first heard of Myeloma years ago, patients were told we can try this but there's not much we can do for you. This disease is untreatable. Now she, some 30 years later, has seen new drugs introduced, longer survival rates, older drugs like Revlimid and Velcade helping so many Myeloma patients. Can't tolerate Revlimid, Pomalyst, Velcade well there is now Plan B, Plan C, Plan D etc. Myeloma is now treatable but still not curable. There will always be Myeloma cells "lurking" in my blood but my numbers are not measuring them at this time. My treatment plan is working. My treatment plan is pushing me towards remission. My treatment plan is working.
Tomorrow I also have an appointment to see Dr. Sarriera. All my lab tests should be back and from what I am seeing, all looks good again. Just need Dr. Sarriera to verify. Also, I will be able to ask about Desiree. And hopefully see some pictures of those babies.
Arlene. Arlene is Ken's, our founder of the Myeloma support group, second in command. She is an oncology nurse. Has been with the group for a long time. Arlene supports us in so many ways. She very rarely misses a meeting. Is there to decorate the tables, lead the group chat session, get us to sign cards for our members who are sick or lost a family member and keeps Ken in order. Tonight she shared with us how she came about being a part of the group. Sorry but I forget how long ago she began coming to meetings. But think it was from pretty much the beginning 10 years ago. When she was sharing, she got a bit emotional and said this group is like my family. It is my family. And I agree wholeheartedly. This group has become my family. This group has become my treatable part of my Myeloma. This group has become a part of my monthly schedule. This group has become a part of me.
Quote:
You can beat cancer by how you live, why you live and in the manner in which you love.
Sunday, October 8, 2017
Got ya.
Just an update on my day 2 of week 1, cycle 2. Was really in and out rather fast. Took me right in to put in my lines for my Kyprolis drip. And was sent back to my room as soon as they were done. My oncology nurse was Mike. Have had him before. Pharmacy mixed my drugs right sent them to my room within about 15 minutes after we sat down. Hooked me up and within 15 minutes I was done and dismissed.
Once we got home, I noticed the area around my port was a little bluish and looked swollen. My port isn't completely flush with my chest but not raised a lot. I watched it a bit and it seemed to be swelling more. Decided to call the treatment center as I was getting bit anxious. Talked with Maggie, the charge nurse. She, of course, right away said if I wanted to come back in and be checked, please do. She felt the way I was describing the looks of the area around my port that a capillary was probably hit when they were putting the lines in to my port. We decide to watch it for the rest of the day and night. Then I was to call in the morning. I watched. Swelling stopped. Today, Sunday, it seems to be back to normal. Will have them check it out on Tuesday.
Weekend was a little down. Thursday I was super tired. Friday and Saturday I had to push myself to move. I did get out to the grocery store on Friday. Well, after we had Triple A here to replace my car battery. Was time I guess. This Florida heat is hard on your cars so they say. Seemed to not have a lot of energy. Even took some naps. :) Figured some of it was the coming off the steroids. Today, Sunday I felt the best I had all weekend.
Bill, once again, got in with some fire ants. He is so careful but guess they seek him out. Not as many bites this time but boy his ankles are swollen. Especially the left one. Was having trouble walking for a bit. Doctor did you say?, not happening. I tried.
Kristi, Matt, Sasha and Ellie (well, she came later) came over today for spaghetti. Good spaghetti if I must say. Once Ellie got here, we had a Carvel ice cream cake to celebrate Sasha's got ya day. 12 years ago today, Sasha made Kristi and Matt parents. What a treasure this child is.
Cycle 2, week 2 starts Tuesday. Plus I have an appointment on Tuesday to see Dr. Sarreria. Hopefully all my labs are back. Anxious to see if I am holding strong on the M-spike. Want to hear that remission word!!! Want to be able to start a maintenance plan that works. Want to not have to run to the Cancer Center twice a week. I know a have a few more cycles to get there but need to hear that we are working towards those things.
Quote:
Don't let it break you. No matter how hard things get, life goes on.
Just an update on my day 2 of week 1, cycle 2. Was really in and out rather fast. Took me right in to put in my lines for my Kyprolis drip. And was sent back to my room as soon as they were done. My oncology nurse was Mike. Have had him before. Pharmacy mixed my drugs right sent them to my room within about 15 minutes after we sat down. Hooked me up and within 15 minutes I was done and dismissed.
Once we got home, I noticed the area around my port was a little bluish and looked swollen. My port isn't completely flush with my chest but not raised a lot. I watched it a bit and it seemed to be swelling more. Decided to call the treatment center as I was getting bit anxious. Talked with Maggie, the charge nurse. She, of course, right away said if I wanted to come back in and be checked, please do. She felt the way I was describing the looks of the area around my port that a capillary was probably hit when they were putting the lines in to my port. We decide to watch it for the rest of the day and night. Then I was to call in the morning. I watched. Swelling stopped. Today, Sunday, it seems to be back to normal. Will have them check it out on Tuesday.
Weekend was a little down. Thursday I was super tired. Friday and Saturday I had to push myself to move. I did get out to the grocery store on Friday. Well, after we had Triple A here to replace my car battery. Was time I guess. This Florida heat is hard on your cars so they say. Seemed to not have a lot of energy. Even took some naps. :) Figured some of it was the coming off the steroids. Today, Sunday I felt the best I had all weekend.
Bill, once again, got in with some fire ants. He is so careful but guess they seek him out. Not as many bites this time but boy his ankles are swollen. Especially the left one. Was having trouble walking for a bit. Doctor did you say?, not happening. I tried.
Kristi, Matt, Sasha and Ellie (well, she came later) came over today for spaghetti. Good spaghetti if I must say. Once Ellie got here, we had a Carvel ice cream cake to celebrate Sasha's got ya day. 12 years ago today, Sasha made Kristi and Matt parents. What a treasure this child is.
Cycle 2, week 2 starts Tuesday. Plus I have an appointment on Tuesday to see Dr. Sarreria. Hopefully all my labs are back. Anxious to see if I am holding strong on the M-spike. Want to hear that remission word!!! Want to be able to start a maintenance plan that works. Want to not have to run to the Cancer Center twice a week. I know a have a few more cycles to get there but need to hear that we are working towards those things.
Quote:
Don't let it break you. No matter how hard things get, life goes on.
Tuesday, October 3, 2017
Shut the door.
Today was Cycle 2, week 1, day 1. My long day. Even a tad bit longer as they had to draw 6 tubes of blood for the lab. 4 gold top tubes, 2 green top tubes (I think it was green). These extra draws are for my Myeloma tests requested by Dr. Sarriera for next week's appointment. As we know, some of the Myeloma tests take extra time. Getting on a schedule to have them done the week before my appointment so they are back and ready to be discussed. Took my 10 Dexamethasone this morning along with my regular 4 pills. Waiting now to take my 11 Cyclophosphamide around 10:30. It's about 10:15 now. Then, since the Dex has me wired, I will be up for a bit.
Oh, also took an extra pill this morning. It was my Z-pack for my sinus infection. My Arithmetic pill as I call it. Started feeling like I was getting a cold on Tuesday. Use Aleve and Vicks for two nights. By Friday, felt somewhat worse but still not real bad. Saturday was okay. Then Sunday evening it felt and sounded like my "old time" sinus infections. I kept taking my temperature all week because if I would spike a temperature, I would have to get in to the Cancer Center as soon as possible. This is because of my immune system. Highest was 98.5 which is nothing. Monday morning as soon as my family doctor opened, I called and got any appointment. Dr. Henley didn't take long to agree with me. Script written and was out within 15 minutes. So took two pills yesterday and 1 today. Have 3 more to go. Actually feel somewhat better today. They always work for me.
Got to the Cancer Center in time to go to the library and also pick up my script at their pharmacy. We really like that pharmacy. And most of them recognize me. Hmmm??? Library stop was to ask if they would display brochures about our Myeloma support group. Of course they would. Not sure if we will get any new participants but worth the try. I know if Kristi hadn't found this group for us as quickly as she did if we would have found it. Probably but who knows when. So glad for this support. You have no idea how I feel when I leave. Hard to explain. Just know it's a great feeling.
Today was an okay day when I got up but after I got ready to leave for the Cancer Center, the tears were there. Didn't take much to turn in to a fountain that wouldn't turn off for a bit. Sometimes I just wish I didn't have these appointments, didn't have to drive anywhere, didn't have to worry about my bilirubin results, didn't have to have blood drawn, didn't have to take all these dang pills, didn't have to, didn't have to, didn't have to. Then I realize that I do have to, that I do have to, that I do have. Collected myself together and did!!!
10:30. Be right back. 3 capsules, 3 capsules, 3 capsules, 2 capsules, done. Mom asks me every time if I take them with yogurt. No mom, I just put them in my mouth and swallow them. For someone who only ever took one pill a day, I have become good at this because I do have to.
My lab tech today was Kerrie Ann. Her sisters names are Karen, Kristy, Kate. Had a brother name Doug. Forgot to tell you this Kerri and Kristi. Not sure what credentials these techs have but I know some of them rotate to the rooms where the cancer patients get their drips. Not the normal lab techs we are used to. I don't even think the techs on the 1st floor of the Cancer Center have special credentials. I get draws there occasionally.
Miles was my oncology nurse again today. And he has worked in the lab draw area. In fact, that's where I first met him. Got in my room around 1. Waited for my lab results so they could mix my Kyprolis. Labs finally came back around 1:30. Bilirubin was up again but down from last Tuesday. 2.0 last Tuesday and 1.6 today. Still high. Miles had to check with Dr. Sarriera again. He approved. Miles sent order to pharmacy and had to wait for the mix. I actually fell asleep for a bit. Drip started about 2:20. Done and out of there around 2:40. Tomorrow should go fast. No labs.
During the time we were waiting on the labs, bells started dinging and lights started flashing. Bill and I did a sit up straight. What??? Miles walked over and shut the door to our room. Said it was a requirement when those things happen (bells and lights). Still nothing as to what was going on. No announcements. Miles was very calm. Me not so much. Bill not so much. Finally an announcement was made but couldn't hear it because our door was shut. Not speakers in our room. Sure that was on purpose. Bill thought they said something about smoke on the 1st floor. Finally the bells stopped. Lights on for just a bit more. One of the oncology nurses, Kara, came in and told Miles what was going on. When she left, I asked him. There was pop and the sprinklers went off. Part of the first floor was flooded with black, oily water as the elevators were involved too. When we finally left, we had to take the back elevators down to the first floor and cross over. I was waiting on Bill and one of the receptionist (guest service is located where this happened) said she was just sitting there, heard a pop and got soaked. There were maintenance workers everywhere on that floor. Sort of scary with all that goes on in the world today. Hate that feeling but with Pulse just a 1/2 mile up the road from the Cancer Center and the Vegas shootings just happening, I was a bit scared.
Quote:
Sometimes when I say I am okay, I just want someone to say, here is a hug, I know you are not.
Today was Cycle 2, week 1, day 1. My long day. Even a tad bit longer as they had to draw 6 tubes of blood for the lab. 4 gold top tubes, 2 green top tubes (I think it was green). These extra draws are for my Myeloma tests requested by Dr. Sarriera for next week's appointment. As we know, some of the Myeloma tests take extra time. Getting on a schedule to have them done the week before my appointment so they are back and ready to be discussed. Took my 10 Dexamethasone this morning along with my regular 4 pills. Waiting now to take my 11 Cyclophosphamide around 10:30. It's about 10:15 now. Then, since the Dex has me wired, I will be up for a bit.
Oh, also took an extra pill this morning. It was my Z-pack for my sinus infection. My Arithmetic pill as I call it. Started feeling like I was getting a cold on Tuesday. Use Aleve and Vicks for two nights. By Friday, felt somewhat worse but still not real bad. Saturday was okay. Then Sunday evening it felt and sounded like my "old time" sinus infections. I kept taking my temperature all week because if I would spike a temperature, I would have to get in to the Cancer Center as soon as possible. This is because of my immune system. Highest was 98.5 which is nothing. Monday morning as soon as my family doctor opened, I called and got any appointment. Dr. Henley didn't take long to agree with me. Script written and was out within 15 minutes. So took two pills yesterday and 1 today. Have 3 more to go. Actually feel somewhat better today. They always work for me.
Got to the Cancer Center in time to go to the library and also pick up my script at their pharmacy. We really like that pharmacy. And most of them recognize me. Hmmm??? Library stop was to ask if they would display brochures about our Myeloma support group. Of course they would. Not sure if we will get any new participants but worth the try. I know if Kristi hadn't found this group for us as quickly as she did if we would have found it. Probably but who knows when. So glad for this support. You have no idea how I feel when I leave. Hard to explain. Just know it's a great feeling.
Today was an okay day when I got up but after I got ready to leave for the Cancer Center, the tears were there. Didn't take much to turn in to a fountain that wouldn't turn off for a bit. Sometimes I just wish I didn't have these appointments, didn't have to drive anywhere, didn't have to worry about my bilirubin results, didn't have to have blood drawn, didn't have to take all these dang pills, didn't have to, didn't have to, didn't have to. Then I realize that I do have to, that I do have to, that I do have. Collected myself together and did!!!
10:30. Be right back. 3 capsules, 3 capsules, 3 capsules, 2 capsules, done. Mom asks me every time if I take them with yogurt. No mom, I just put them in my mouth and swallow them. For someone who only ever took one pill a day, I have become good at this because I do have to.
My lab tech today was Kerrie Ann. Her sisters names are Karen, Kristy, Kate. Had a brother name Doug. Forgot to tell you this Kerri and Kristi. Not sure what credentials these techs have but I know some of them rotate to the rooms where the cancer patients get their drips. Not the normal lab techs we are used to. I don't even think the techs on the 1st floor of the Cancer Center have special credentials. I get draws there occasionally.
Miles was my oncology nurse again today. And he has worked in the lab draw area. In fact, that's where I first met him. Got in my room around 1. Waited for my lab results so they could mix my Kyprolis. Labs finally came back around 1:30. Bilirubin was up again but down from last Tuesday. 2.0 last Tuesday and 1.6 today. Still high. Miles had to check with Dr. Sarriera again. He approved. Miles sent order to pharmacy and had to wait for the mix. I actually fell asleep for a bit. Drip started about 2:20. Done and out of there around 2:40. Tomorrow should go fast. No labs.
During the time we were waiting on the labs, bells started dinging and lights started flashing. Bill and I did a sit up straight. What??? Miles walked over and shut the door to our room. Said it was a requirement when those things happen (bells and lights). Still nothing as to what was going on. No announcements. Miles was very calm. Me not so much. Bill not so much. Finally an announcement was made but couldn't hear it because our door was shut. Not speakers in our room. Sure that was on purpose. Bill thought they said something about smoke on the 1st floor. Finally the bells stopped. Lights on for just a bit more. One of the oncology nurses, Kara, came in and told Miles what was going on. When she left, I asked him. There was pop and the sprinklers went off. Part of the first floor was flooded with black, oily water as the elevators were involved too. When we finally left, we had to take the back elevators down to the first floor and cross over. I was waiting on Bill and one of the receptionist (guest service is located where this happened) said she was just sitting there, heard a pop and got soaked. There were maintenance workers everywhere on that floor. Sort of scary with all that goes on in the world today. Hate that feeling but with Pulse just a 1/2 mile up the road from the Cancer Center and the Vegas shootings just happening, I was a bit scared.
Quote:
Sometimes when I say I am okay, I just want someone to say, here is a hug, I know you are not.
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