Pink and black.
Just needed to fill in what's been going on the last few days. Had my happy news and now some down times.
Had my treatments last Tuesday and Wednesday. Cycle 5, week 1. Felt good enough on Thursday to go out and do some last minute shopping. Hobby Lobby, Target and Neighborhood Market (Wal Mart that only sells food). Friday had my usual tired day but only felt more fatigued. Saturday much the same. No energy. Sunday, Christmas Eve, I felt a bit better. Was able to go to Kristi and Matt's first annual Christmas Open House. Just felt tired. Did lay down a bit there. Brought the girls home with us. Christmas Day - no energy. Had to push myself to get out of bed. Nauseated, skitters. Thank goodness Kristi and Bill could keep the day rolling. Nice meal. Bill smoked a brisket for about 16 hours. Kristi and Matt brought over some Mac and cheese and veggie tray. Gery and Michelle bought delicious lasagna made by Gery. Marilyn and Andy brought the desserts. Everyone enjoyed. I, not so much. No appetite.
Yesterday, Tuesday 26th, was start of week 2 of cycle 5. I explained my systems to my nurse, Miles. Sinus pressure, no appetite, waking up drenched from head to waist, skitters, no energy, He contacted Dr. Sarriera's office. Put me on an antibiotic. Testing needed for cdiff. Gave me some fluids along with my treatment. Bilirubin cooperated this time.
Today, Wednesday, 27th, I just didn't feel right. No energy, no appetite. Woke up again drenched from head to waist around 4 AM. Sheets wet too. So just laid on some towels and wrapped the quilt and top sheet in towels, changed night clothes and went back to sleep. Woke up around 8 drenched again. Changed clothes. Bill pulled the sheets and quilt and started the laundry.
Got to the Cancer Center around 12. Was in tears by then. Also, the first time ever since I been going here, had to take a wheel chair. Lightheaded. Couldn't stop the tears. The receptionist saw that I was upset, who couldn't. Contacted my nurse and was sent to one of the private rooms within about 15 minutes waiting. And was so happy to see I had Patrice, my favorite oncology nurse on the 5th floor.
She listen to my systems as the tears fell. She contacted Dr. Sarriera's office. He and Abby are out until the 6th of January. BUT Desiree is back. Thanks Desiree. Gave me fluids again along with my treatment. Explained that because of my condition, something compromised my immune system. That's why the cdiff test. This came back negative. Which is great. Not calling this a stomach bug or the flu. Just my immune system, sinus infections and a bit of dehydration. If I spike a fever, I am to call the Cancer Center team immediately. The chemo is killing off good cells with bad cells. Thus, red, white and platelets low counts. Patrice also explained that my good colon bacteria fighters are also being destroyed by my chemo treatment. Thus, infection easier to grow there. She stayed with me off and on throughout my visit making sure I was comfortable and was able to calm myself down. Love my Patrice.
Chemo drip and fluid drip done. Port removed and left in the wheel chair to the car. There will be no more wheel chair episodes. Wanted to stop to see Desiree but I was afraid since I was so emotional today and she just getting back yesterday, we would flood the office with tears.
Bill headed to the grocery store after we got home for Power Ade and Bob Evans mashed potatoes. My great caregiver. Just couldn't handle all this without him. I made some chicken noodle soup for us from scratch till he got home. Laid down then but steroids kept me awake. Just like they are keeping me awake now. Had some Bob Evans mashed potatoes for dinner. Tasted pretty good.
So that's been my last few days. Again, sorry if if missed saying Merry Christmas to anyone. And thank you for all the beautiful cards. I am hoping to be on the mend with this sickness soon. Not liking it.
Patrice was covered in her yellow insulation coat because she had to put in my port. And we didn't know about the cdiff test yet. They are so caution they don't bring germs from one patient to the another whatever it may be. And these coats protect them. Well, her coat wasn't tied tightly in the back and I notice she had on pink and black. Pink top and black pants. Same as me. We laughed a bit and she told me that she has a routine of what color to wear each day of the week. Had off Monday and so had been mixed up all week. Not her normal color to wear on Wednesday.
Quote:
You will never regret being kind.
Wednesday, December 27, 2017
Wednesday, December 20, 2017
"Merry" back in my Christmas.
REMISSION. REMISSION. Yes, I finally heard the word I have been waiting for the last 1 1/2 years to hear. Today was my appointment with Dr. Sarriera. We discussed my pet scan and how all looked great. No active Myeloma to be seen. Then discussed the Myeloma blood results. Low red blood count, low white blood count and low platelets all due to the chemo treatments. My vitamin D has increased from 19.1 to 26. Looking good. Needs to be in the normal range of 30-40. My "M" spike (no measurable Myeloma) has stayed at "0" for 12 months. No monoclonal bands detected (abnormal protein in my blood). All good. Then Dr. Sarriera explained the light chain results.
Usually one of the light chains, lambda or kappa (Kristi thinks I am in a college sorority) increases and one of them decreases. In my case, they are both decreasing. This makes for a lower than normal light chain ratio. Makes sense. Since there is not an increase and a decrease, there isn't any progression of my Myeloma at this time. All these lab results together, along with the Pet scan is showing NO progression of Myeloma at the present. We know there is and alway will be some Myeloma there but I am beating it down.
Dr. Sarriera wants me to add two more tests for further results of this great news. I will have to have a bone marrow biopsy. This will be done after my cycle 6 treatments. Also a full skeletal X-ray from head to toe. That he would like to see with in the next 1 to 2 weeks. And he wants the Myeloma labs to be repeated every 4 to 5 weeks with a visit to him the following week.
We will continue with my chemo treatments for another 3 months after this cycle (5). So will do cycle 6, 7 & 8 to complete my treatment. This should take me till the end of March. Then I will go on a maintenance plan. The reason he wants to take it out 8 cycles is because that is what the standard is after a transplant. Since my Myeloma came back so quickly after the transplant, my schedule for this was all thrown off. Had to do the radiation first. Then we had to start over trying to get a treatment that would work for me med wise. Finally did with the Dex (steroids), Kryprolis (chemo drip) and Cytoxin (chemo pills). So a few more weeks of chemo tired, Dex insomnia, Dex ups and downs, Dex bursts of tears whenever, chemo drips, chemo pills, labs, driving to the Cancer Center, etc. We got this!!! Dr. Sarriera explained once on maintenance, it will just be a lower dose of Dex (Bill is so happy) and the Kryprolis drip once a week. Cytoxin will be dropped.
I then asked Dr. Sarriera if I would ever hear the work, REMISSION? He asked me if I would like to hear it now? Yes and mean it. He said well then I can say you are in REMISSION. Finally, after
1 1/2 years. I can actually say I am in REMISSION. Finally, say that word over and over again. Finally, say that word when I am down from the chemo. Finally say that word when I feel like it. Finally say that word when look at Bill and lower some of his stress. Finally tell everyone, I am in REMISSION when they ask about my cancer. Finally know I am in REMISSION. You can lurk in me Myeloma but I got you beaten down to be able to say REMISSION!!! REMISSION! I got you beaten down!!!!
Today I went to the doctor about my condition,
And he said, well we can say you are in remission!
This is for Louise, Sandy, Cheri and Deb Noll. A little blast from the past!!!
Dr. Sarriera once again left with a smile on his face. And Bill and I as well. Lots of kisses while we were waiting to be check out with appointments being made. Lots of smiles between us knowing why. Michelle and I even celebrated with a trip to Jeremiahs!!!!
Sandy and I were discussing my Christmas of last year. The beautiful tree Kristi, Sasha and Ellie made me. The shopping that Kristi and Kerri did for me so my grandkids would have packages under the tree from Didi and Pap. How I couldn't wait to crawl in bed at 7 and sleep till 8 the next morning. How "skinny" I was. No hair! How walking 2 times around our pool wore me out. How I only wanted to eat Bob Evans mashed potatoes. Wow, come a long way to this Christmas. Sandy said this year I was putting back the "Merry" in my Christmas. And I believe Dr. Sarriera added to that merry. And I do believe the One above has answered my prayers, along with many others. Prayers to be continued.
I would like to wish everyone a very Merry Christmas, Happy Hanukkah!!!
Quote:
Most of our lives is easy but when it becomes difficult and cancer strikes, it's just about remembering one thing. I must and will simply survive.
REMISSION. REMISSION. Yes, I finally heard the word I have been waiting for the last 1 1/2 years to hear. Today was my appointment with Dr. Sarriera. We discussed my pet scan and how all looked great. No active Myeloma to be seen. Then discussed the Myeloma blood results. Low red blood count, low white blood count and low platelets all due to the chemo treatments. My vitamin D has increased from 19.1 to 26. Looking good. Needs to be in the normal range of 30-40. My "M" spike (no measurable Myeloma) has stayed at "0" for 12 months. No monoclonal bands detected (abnormal protein in my blood). All good. Then Dr. Sarriera explained the light chain results.
Usually one of the light chains, lambda or kappa (Kristi thinks I am in a college sorority) increases and one of them decreases. In my case, they are both decreasing. This makes for a lower than normal light chain ratio. Makes sense. Since there is not an increase and a decrease, there isn't any progression of my Myeloma at this time. All these lab results together, along with the Pet scan is showing NO progression of Myeloma at the present. We know there is and alway will be some Myeloma there but I am beating it down.
Dr. Sarriera wants me to add two more tests for further results of this great news. I will have to have a bone marrow biopsy. This will be done after my cycle 6 treatments. Also a full skeletal X-ray from head to toe. That he would like to see with in the next 1 to 2 weeks. And he wants the Myeloma labs to be repeated every 4 to 5 weeks with a visit to him the following week.
We will continue with my chemo treatments for another 3 months after this cycle (5). So will do cycle 6, 7 & 8 to complete my treatment. This should take me till the end of March. Then I will go on a maintenance plan. The reason he wants to take it out 8 cycles is because that is what the standard is after a transplant. Since my Myeloma came back so quickly after the transplant, my schedule for this was all thrown off. Had to do the radiation first. Then we had to start over trying to get a treatment that would work for me med wise. Finally did with the Dex (steroids), Kryprolis (chemo drip) and Cytoxin (chemo pills). So a few more weeks of chemo tired, Dex insomnia, Dex ups and downs, Dex bursts of tears whenever, chemo drips, chemo pills, labs, driving to the Cancer Center, etc. We got this!!! Dr. Sarriera explained once on maintenance, it will just be a lower dose of Dex (Bill is so happy) and the Kryprolis drip once a week. Cytoxin will be dropped.
I then asked Dr. Sarriera if I would ever hear the work, REMISSION? He asked me if I would like to hear it now? Yes and mean it. He said well then I can say you are in REMISSION. Finally, after
1 1/2 years. I can actually say I am in REMISSION. Finally, say that word over and over again. Finally, say that word when I am down from the chemo. Finally say that word when I feel like it. Finally say that word when look at Bill and lower some of his stress. Finally tell everyone, I am in REMISSION when they ask about my cancer. Finally know I am in REMISSION. You can lurk in me Myeloma but I got you beaten down to be able to say REMISSION!!! REMISSION! I got you beaten down!!!!
Today I went to the doctor about my condition,
And he said, well we can say you are in remission!
This is for Louise, Sandy, Cheri and Deb Noll. A little blast from the past!!!
Dr. Sarriera once again left with a smile on his face. And Bill and I as well. Lots of kisses while we were waiting to be check out with appointments being made. Lots of smiles between us knowing why. Michelle and I even celebrated with a trip to Jeremiahs!!!!
Sandy and I were discussing my Christmas of last year. The beautiful tree Kristi, Sasha and Ellie made me. The shopping that Kristi and Kerri did for me so my grandkids would have packages under the tree from Didi and Pap. How I couldn't wait to crawl in bed at 7 and sleep till 8 the next morning. How "skinny" I was. No hair! How walking 2 times around our pool wore me out. How I only wanted to eat Bob Evans mashed potatoes. Wow, come a long way to this Christmas. Sandy said this year I was putting back the "Merry" in my Christmas. And I believe Dr. Sarriera added to that merry. And I do believe the One above has answered my prayers, along with many others. Prayers to be continued.
I would like to wish everyone a very Merry Christmas, Happy Hanukkah!!!
Quote:
Most of our lives is easy but when it becomes difficult and cancer strikes, it's just about remembering one thing. I must and will simply survive.
Monday, December 11, 2017
Doug
My lab test results are back. They all are good with the exception of my light chain ratio. It's still low and not near the normal range. Normal is .2600 to 1.65. My results came back at 0.0546.
Dr. Sarriera wants this number to be in the normal range.
Since I do not see Dr. Sarriera until December 20th, I asked Ketty to have him review my lab results since my light chain ratio was low. I received this email regarding my Pet scan and lab results:
Hi Kathy, So both Dr. Sarriera and Abby looked at your labs and your PET. Dr. Sarriera states that this can happen at times for various reasons. Since your Pet was negative, he's not concerned with the results at this time. He would like to keep monitoring it, make no changes to your treatment and repeat your labs in 4 weeks. Ketty
Great email, great labs, great Pet scan. Great news!!! Of course, I will be asking what are the various reasons.
I will begin my next cycle, cycle 5, of treatments the 19th. Have a few days off except for my Dex (steroids) which I take tomorrow morning. Maybe, just maybe, after this cycle and the next, I will be able to go on just a maintenance plan.
Kerri and Paul had a heifer that was due to drop a baby soon. Well at 2 AM a few days ago, she had to have a C-section. Baby too big. After the vet, delivered via the section, Kerri asked him what his first name was. When he told her, Kerri said then that will be this bull's name. Doug. His name was Doug. Doug and mamma are both doing well.
Quote:
Be thankful for what you are now. Keep fighting for what you want to be tomorrow.
My lab test results are back. They all are good with the exception of my light chain ratio. It's still low and not near the normal range. Normal is .2600 to 1.65. My results came back at 0.0546.
Dr. Sarriera wants this number to be in the normal range.
Since I do not see Dr. Sarriera until December 20th, I asked Ketty to have him review my lab results since my light chain ratio was low. I received this email regarding my Pet scan and lab results:
Hi Kathy, So both Dr. Sarriera and Abby looked at your labs and your PET. Dr. Sarriera states that this can happen at times for various reasons. Since your Pet was negative, he's not concerned with the results at this time. He would like to keep monitoring it, make no changes to your treatment and repeat your labs in 4 weeks. Ketty
Great email, great labs, great Pet scan. Great news!!! Of course, I will be asking what are the various reasons.
I will begin my next cycle, cycle 5, of treatments the 19th. Have a few days off except for my Dex (steroids) which I take tomorrow morning. Maybe, just maybe, after this cycle and the next, I will be able to go on just a maintenance plan.
Kerri and Paul had a heifer that was due to drop a baby soon. Well at 2 AM a few days ago, she had to have a C-section. Baby too big. After the vet, delivered via the section, Kerri asked him what his first name was. When he told her, Kerri said then that will be this bull's name. Doug. His name was Doug. Doug and mamma are both doing well.
Quote:
Be thankful for what you are now. Keep fighting for what you want to be tomorrow.
Tuesday, December 5, 2017
New face.
Today I received an email from Dr. Sarriera's office. An email I was afraid to open. An email that I was afraid to read. An email I started because I will not see Dr. Sarriera until Dec 20th. An email from Ketty with a response from Abby. And that email had some wonderful news for Bill and I. And I was able to read it. And I was able to put some fear away. Some; not all.
My Pet scan was done on 11/30. Got there at 11 for my 1 o'clock appointment. Had to get lines put in my port at 2ACC (second floor). Then had to go to registration on the 1st floor of the Charles Louis Pavilion. From there to Pet scan waiting area. Sat there a bit. Finally close to 12, Steve (didn't have a nice bedside manner) came for me. Bill left then as he couldn't go back because of me being injected with a dye. This dye, FDG, a simple sugar (like glucose), was injected into my bloodstream via my port. It contains a small amount of radioactive material too. It accumulates in my body and
gives off energy in the form of "gamma" rays. It can detect cancerous tissues and cells in the body that can not always be found through a CT scan or a MRI. After the injection, I had to sit in a room for an incubation period of 1 hour. About 1/2 hour in, I popped my Ativan. Claustrophobic you know. Mary can relate with this.
About 10 minutes before Steve came in to get me, I fell asleep. He woke me and off we went to the dreaded room with the dreaded machine. But I was walking on clouds by then. Told me lay on the table. Covered me up. Put a strap to help hold my arms on the table. Then put a piece of tape, I think it was duct tape (HA) across my forehead to table. It was lose because I checked. My Ativan had pretty much kicked in all the way by then because I normally would have ripped it off and then slapped it on Steve. He told me that it would be about 35 to 40 minutes for the head to mid thigh test. He started the process and my head went in the machine and I don't remember anything until he was asking me to flip around so he could do from my feet to the mid thigh that way. Which I flipped and don't remember any thing of that. Just remember him saying we were done. Helped me off the table and out to Bill. Done for the rest of the day. I like the way Ativan works for my CT scans, MRI's, Pet scans but don't like the way I feel for the day of and then next day.
So all this about the Pet scan was because this dreaded email I wanted was the test results of that scan. Did not want to wait for my appointment one the 20th. The last scan was in June because I found another lump on my head before radiation was done. I knew it was Myeloma just from the feel of it. Dr. Sarriera felt the same. That Pet scan showed the active Myeloma. The relapse so quickly after my transplant. Aggressive, active Myeloma. Treatments set in to action immediately. Low dose Revlimid, no. Polamalist, not! Dex, Kyprolis and Cytoxin, yes. Am now on Cycle 4, week 3, day 2 Wednesday.
Finally, right? Lol. The email please! My results came back saying "no focal hyper metabolic to suggest malignancy". And that means, negative findings throughout my body. There are still the multiple lytic lesions (spots where the bone tissue has been destroyed) throughout my skull. Abby said to tell me the Pet scan was NEGATIVE. Good news, great news, happy news once again.
As to why I said I was able to put away some of my fears. Well, there has been several times in the last year and 3 or 4 months since I was diagnosed that we have had happy news only to have it shot down in a few days with BUT now we see this. So it's hard for me to put on a full happy face when we get good news. I am sure it's hard to understand and why not just go with what you have now. The slapping us, especially me, down is very hard. So yes, I am happy, excited about the Pet scan but can't go all the way there because of the NOW this. Sorry, my friends.
I had my Multiple Myeloma labs drawn today. These will be back in a few days. I will watch on my portal. Need to see the light chain ratio. This was the area Dr. Sarriera was concerned about last time. Another I need to see but afraid to look at the results. Bill and I pretty much know how to read these reports. Especially the labs.
It is now 12:11 and all my 30 pills have been taken. I am not one bit tired as you can tell by my rattling on and on. My blog, my rattle. lol Steroid, Tuesday late night.
Tomorrow, Wednesday December the 6th, is the last day of Cycle 4. Then nothing but my Dex until I go back to start Cycle 5 on December 19th. And I will have a new face in the treatment room with me. Excited about that. Sandy and Denny are down for a week and Sandy is going to join me at the Cancer Center and in my treatment room. Although Bill will be driving us because there is no way I can drive downtown Orlando with these drugs in me or would I want Sandy to drive it. Too much traffic, to many Florida drivers.
Quote:
With cancer you learn how fragile life is and at any given time, you could lose it. So keep your head up, God gives his hardest battles to his strongest!
Today I received an email from Dr. Sarriera's office. An email I was afraid to open. An email that I was afraid to read. An email I started because I will not see Dr. Sarriera until Dec 20th. An email from Ketty with a response from Abby. And that email had some wonderful news for Bill and I. And I was able to read it. And I was able to put some fear away. Some; not all.
My Pet scan was done on 11/30. Got there at 11 for my 1 o'clock appointment. Had to get lines put in my port at 2ACC (second floor). Then had to go to registration on the 1st floor of the Charles Louis Pavilion. From there to Pet scan waiting area. Sat there a bit. Finally close to 12, Steve (didn't have a nice bedside manner) came for me. Bill left then as he couldn't go back because of me being injected with a dye. This dye, FDG, a simple sugar (like glucose), was injected into my bloodstream via my port. It contains a small amount of radioactive material too. It accumulates in my body and
gives off energy in the form of "gamma" rays. It can detect cancerous tissues and cells in the body that can not always be found through a CT scan or a MRI. After the injection, I had to sit in a room for an incubation period of 1 hour. About 1/2 hour in, I popped my Ativan. Claustrophobic you know. Mary can relate with this.
About 10 minutes before Steve came in to get me, I fell asleep. He woke me and off we went to the dreaded room with the dreaded machine. But I was walking on clouds by then. Told me lay on the table. Covered me up. Put a strap to help hold my arms on the table. Then put a piece of tape, I think it was duct tape (HA) across my forehead to table. It was lose because I checked. My Ativan had pretty much kicked in all the way by then because I normally would have ripped it off and then slapped it on Steve. He told me that it would be about 35 to 40 minutes for the head to mid thigh test. He started the process and my head went in the machine and I don't remember anything until he was asking me to flip around so he could do from my feet to the mid thigh that way. Which I flipped and don't remember any thing of that. Just remember him saying we were done. Helped me off the table and out to Bill. Done for the rest of the day. I like the way Ativan works for my CT scans, MRI's, Pet scans but don't like the way I feel for the day of and then next day.
So all this about the Pet scan was because this dreaded email I wanted was the test results of that scan. Did not want to wait for my appointment one the 20th. The last scan was in June because I found another lump on my head before radiation was done. I knew it was Myeloma just from the feel of it. Dr. Sarriera felt the same. That Pet scan showed the active Myeloma. The relapse so quickly after my transplant. Aggressive, active Myeloma. Treatments set in to action immediately. Low dose Revlimid, no. Polamalist, not! Dex, Kyprolis and Cytoxin, yes. Am now on Cycle 4, week 3, day 2 Wednesday.
Finally, right? Lol. The email please! My results came back saying "no focal hyper metabolic to suggest malignancy". And that means, negative findings throughout my body. There are still the multiple lytic lesions (spots where the bone tissue has been destroyed) throughout my skull. Abby said to tell me the Pet scan was NEGATIVE. Good news, great news, happy news once again.
As to why I said I was able to put away some of my fears. Well, there has been several times in the last year and 3 or 4 months since I was diagnosed that we have had happy news only to have it shot down in a few days with BUT now we see this. So it's hard for me to put on a full happy face when we get good news. I am sure it's hard to understand and why not just go with what you have now. The slapping us, especially me, down is very hard. So yes, I am happy, excited about the Pet scan but can't go all the way there because of the NOW this. Sorry, my friends.
I had my Multiple Myeloma labs drawn today. These will be back in a few days. I will watch on my portal. Need to see the light chain ratio. This was the area Dr. Sarriera was concerned about last time. Another I need to see but afraid to look at the results. Bill and I pretty much know how to read these reports. Especially the labs.
It is now 12:11 and all my 30 pills have been taken. I am not one bit tired as you can tell by my rattling on and on. My blog, my rattle. lol Steroid, Tuesday late night.
Tomorrow, Wednesday December the 6th, is the last day of Cycle 4. Then nothing but my Dex until I go back to start Cycle 5 on December 19th. And I will have a new face in the treatment room with me. Excited about that. Sandy and Denny are down for a week and Sandy is going to join me at the Cancer Center and in my treatment room. Although Bill will be driving us because there is no way I can drive downtown Orlando with these drugs in me or would I want Sandy to drive it. Too much traffic, to many Florida drivers.
Quote:
With cancer you learn how fragile life is and at any given time, you could lose it. So keep your head up, God gives his hardest battles to his strongest!
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