Good News! Went to Emory today for additional blood work due to the blood clot. Joe's platelets are UP!!!!!!! They are at 117,000. Having said that, Joe will not continue on the clinical trial drug which apparently was the cause for his platelets to lower. On June 9th Joe will start back on the chemo drug, Temodar with what they refer to as the maintenance plan. This plan is 5 days every 28 days he will take Temodar at a higher dosage.
The swelling in his left leg due to the blood clot has gone down a little. Dr Voloschin said it would take a couple of weeks for the swelling to be totally gone.
His right eye is much better. The redness & pain are gone.
Joe has been extremely fatigued & weak but it was explained to us again today that this is due to the radiation treatment. We were told that around the 9th or 10th week he should be regaining his strength and be passed the fatigue for the most part. Joe asked me to let everyone know that this was to be expected and that each day he will get stronger. He knows that those of you who have been around us the last couple of weeks were concerned but he wants to assure everyone that he will get stronger & rested.
We appreciate everything and everyone! Love you all!!!
Monday, May 24, 2010
Friday, May 21, 2010
I woke up this morning about 5:30am to Joe crying out in pain with leg cramps. Got him up and his legs stretched out. He then fell back to sleep. He slept until 7:30am which then I got him up and to the couch in order to take all his meds, 2 eye drops, test his blood sugar level & the Lovenox injection. He eat breakfast and now is back sleeping.
I hope this is just a little bump in the road and he will get past it over the weekend.
Later.
I hope this is just a little bump in the road and he will get past it over the weekend.
Later.
Thursday, May 20, 2010
Came to a curve in the road of our journey today...we went to Emory for the usual labs today and found that Joe's platelets had not changed any and remain low.
We also discovered Joe has a blood clot in his left femur. His ankle has been swollen off and on but this week it had gotten worse and this morning his big toe was blue. We brought it to Dr Voloschin's attention today and he ordered an ultrasound which verified that there is a blood clot. Dr Voloschin then sent us to the infusion lab for Joe's first injection of the blood thinner, Lovenox. Guess who got to inject him in his abdomen???!!! I received my training of 2 minutes and BAM as Emirle would say it was a done deal! So everyday for at least the next 6 months Joe will be receiving Lovenox,by subcutaneous injection by me twice a day in the abdomen.
Next Dr Voloschin deferred us to Joe's local eye doctor to treat his right eye. Dr Newman diagnosis the red watering eye as having herpes virus the same virus that caused the cold sores inside and outside his mouth that Dr Voloschin had been treating.
So what was suppose to be a simple couple of hours today having his labs done ended being a full day and 3 new drugs to add to the list.
We also experienced our first use of a wheelchair. Now that may not sound like much but it's a big thing with Joe. It's like some kind of surrender to him. However, we turned it around with a few good laughs of me steering him into things such as the elevator wall. Or better yet when he has his foot sticking out when I'm trying to turn a corner! :) You have to reach down deep for those laughs but it's what gets you through the day.
We have to be back at Emory on Monday for follow up labs and to see Dr Voloschin and then again next Thursday as well as Dr Newman in Conyers on Thursday afternoon.
We also discovered Joe has a blood clot in his left femur. His ankle has been swollen off and on but this week it had gotten worse and this morning his big toe was blue. We brought it to Dr Voloschin's attention today and he ordered an ultrasound which verified that there is a blood clot. Dr Voloschin then sent us to the infusion lab for Joe's first injection of the blood thinner, Lovenox. Guess who got to inject him in his abdomen???!!! I received my training of 2 minutes and BAM as Emirle would say it was a done deal! So everyday for at least the next 6 months Joe will be receiving Lovenox,by subcutaneous injection by me twice a day in the abdomen.
Next Dr Voloschin deferred us to Joe's local eye doctor to treat his right eye. Dr Newman diagnosis the red watering eye as having herpes virus the same virus that caused the cold sores inside and outside his mouth that Dr Voloschin had been treating.
So what was suppose to be a simple couple of hours today having his labs done ended being a full day and 3 new drugs to add to the list.
We also experienced our first use of a wheelchair. Now that may not sound like much but it's a big thing with Joe. It's like some kind of surrender to him. However, we turned it around with a few good laughs of me steering him into things such as the elevator wall. Or better yet when he has his foot sticking out when I'm trying to turn a corner! :) You have to reach down deep for those laughs but it's what gets you through the day.
We have to be back at Emory on Monday for follow up labs and to see Dr Voloschin and then again next Thursday as well as Dr Newman in Conyers on Thursday afternoon.
Monday, May 17, 2010
Just a reminder Joe can't type on the keyboard or email or text on his cell phone. If you what to contact him he ask that you call him. He is very fatigued & weak but will either answer your call or return as soon as he is able. Thanks for the understanding.
I am also sharing your messages with him from the blog.
I am also sharing your messages with him from the blog.
Saturday, May 15, 2010
Yesterday was not so good of a day for Joe. He was very fatigue more so then ever. He was also very weak most of all in his legs. However when I got home after work he insisted on attending the opening ceremony of the Walton Co Relay for Life. My office had a team in the Relay in honor of Joe. He hung in there and we were both glad he was able to show the girls his appreciation by attending. Some of our friends also attended and we were excited to see them there.
This morning Joe woke with a headache, weaker & nauseated. I called the doctor and we were instructed to increase the steroid back up to 6mg again. He took pain medication which is causing him to sleep which he needs.
Cheryl brought me groceries so we are set for a quiet afternoon and evening and hopefully uneventful. Be back later.
This morning Joe woke with a headache, weaker & nauseated. I called the doctor and we were instructed to increase the steroid back up to 6mg again. He took pain medication which is causing him to sleep which he needs.
Cheryl brought me groceries so we are set for a quiet afternoon and evening and hopefully uneventful. Be back later.
Supporting the troops
The below link takes you to The Newton Citizen newspaper article that was written about Joe & the WWR, etc. There is another picture that you can see if you go to the newspaper site itself. I may be able to add it later today.
Supporting the troops
Supporting the troops
Wednesday, May 12, 2010
I want to clarify how I said something earlier. When Dr Crocker lowered the steroid dosage to 2mg, Joe & I were in agreement with that decision. The physician has to lower the dosage gradually for Joe's system to adjust. It is not until what happened that weekend do you know if your system can do without it or how low a dosage can be tolerated. The steroid is for the swelling which is either due to the radiation or the tumor or both.
We have all trust in our Oncology team!
We have all trust in our Oncology team!
Yeahhhhhhhhhhhhhhhhhh!!! Radiation treatments are over!!! Joe came home with "The Mask" and it is sitting high on the fireplace mantel. Joe thinks we should spray paint it gold!
Dr Crocker lowered the steroid dosage from 6mg to 4mg today which will put Joe back where he was before Dr Crocker lowered it to 2mg which resulted in some side effects that made for a bad weekend.
Dr Voloschin took Joe off the trial drug, Hydroxychloroquine because his platelets had lowered more to 74,000. Normal is around 150,000-170,000. To administer the chemo drug, Temodar the platelets have to be over 100,000. If 20,000 or lower, that requires an infusion. By taking him off the trial drug this will allow us to see if the platelets rise, than we can blame the trial drug. If they remain the same or lower, then Dr Voloschin will change the anti-seizure drug, Zeppra to another drug. This will determine if Zeppra is causing the lower platelets. If it is not the Zeppra, then he will have to change the chemo drug, Temodar to another chemo drug . If that happens then there is a good chance it will be Avastin which will be administered through IV every two weeks. We have the time to try all of this because starting tomorrow Joe is in the "rest period". This time allows the brain/tumor area to "calm down" from the radiation treatment so that the MRI & PET scan will give the doctors an accurate reading on how the treatment affected the tumor.
Hope this was not too confusing. Sentence structure and grammar were never my forte'.
Joe & Josie will be returning to work on Monday barring any unforeseen calamities.
Dr Crocker lowered the steroid dosage from 6mg to 4mg today which will put Joe back where he was before Dr Crocker lowered it to 2mg which resulted in some side effects that made for a bad weekend.
Dr Voloschin took Joe off the trial drug, Hydroxychloroquine because his platelets had lowered more to 74,000. Normal is around 150,000-170,000. To administer the chemo drug, Temodar the platelets have to be over 100,000. If 20,000 or lower, that requires an infusion. By taking him off the trial drug this will allow us to see if the platelets rise, than we can blame the trial drug. If they remain the same or lower, then Dr Voloschin will change the anti-seizure drug, Zeppra to another drug. This will determine if Zeppra is causing the lower platelets. If it is not the Zeppra, then he will have to change the chemo drug, Temodar to another chemo drug . If that happens then there is a good chance it will be Avastin which will be administered through IV every two weeks. We have the time to try all of this because starting tomorrow Joe is in the "rest period". This time allows the brain/tumor area to "calm down" from the radiation treatment so that the MRI & PET scan will give the doctors an accurate reading on how the treatment affected the tumor.
Hope this was not too confusing. Sentence structure and grammar were never my forte'.
Joe & Josie will be returning to work on Monday barring any unforeseen calamities.
Tuesday, May 11, 2010
Christopher was Joe's caregiver today. Christopher has taken Joe to radiation every Tuesday. We have enjoyed so much having him spend the night on Mondays. I know it has been good for Joe & Christopher to have this time together. I also know I have grown closer to Christopher and that is a good feeling. We certainly have had some good laughs and emotional moments! Thank you Christopher!!!
I heard from Emory today that Joe has been scheduled to have his next PET scan on June 3rd. So on June 8th when we meet with the doctors for the MRI results we should also have the PET results. Those results should tell us in more detail how the radiation treatment affected the tumor as well as the clinical trial drug and the 1 week of chemo drug, Temador.
Tomorrow is the last radiation treatment day!!! I will be with Joe tomorrow. He will have labs done and we will get the results of his platelets before we see Dr Voloschin to decide what is going to happen about the chemo plan of treatment. Stay tune!!!
I heard from Emory today that Joe has been scheduled to have his next PET scan on June 3rd. So on June 8th when we meet with the doctors for the MRI results we should also have the PET results. Those results should tell us in more detail how the radiation treatment affected the tumor as well as the clinical trial drug and the 1 week of chemo drug, Temador.
Tomorrow is the last radiation treatment day!!! I will be with Joe tomorrow. He will have labs done and we will get the results of his platelets before we see Dr Voloschin to decide what is going to happen about the chemo plan of treatment. Stay tune!!!
Monday, May 10, 2010
David was Joe's caregiver today. Everything went smoothly. They thought they were going to have some traffic issues because today was Emory's graduation ceremony but evidently they got up there in between it starting and finishing. Thank you David so much for all your time spent taking Joe to Emory!
Joe has 2 radiation treatment days left now! :)
It sure has been a fast 6 weeks. Now it will probably crawl because we have to wait until June 7th to have the MRI to find out what the treatment has done to the tumor. :(
Joe has 2 radiation treatment days left now! :)
It sure has been a fast 6 weeks. Now it will probably crawl because we have to wait until June 7th to have the MRI to find out what the treatment has done to the tumor. :(
Sunday, May 9, 2010
Let me go back a few days ago and catch up.
Carrie Ann & Bobby spent the night with us last Tuesday and brought dinner. Carrie Ann can put together a mean pot roast with the trimmings! It was sooooo good! I introduced Carrie Ann to Papa Joe's famous margaritas. Just like all who have tried them, Carrie Ann could not stop at one either. :) It was a good evening.
Wednesday Bobby & Carrie Ann were Joe's caregivers. Treatment went well with no hiccups. Thank you both!
Friday Cheryl was Joe's caregiver. Treatment went fine. Dr Crocker found out that the MGMT analysis had not been sent off yet from the biopsy. Long story but he got it rolling for us and we should have the results in a couple weeks. The analysis will tell us if Joe's system will be more accepting of the treatment(s) or not so much. It deals with the chromosomes/genetics. You have to read about it to better understand it because it's too hard for me to explain. It overall is the research aspect to help answer the hows and whys of brain tumors.
After treatment, Cheryl helped Joe take Josie to the Vet to get her shots up to date. Thank you Cheryl for everything you have done! You are the greatest!
Ed came by Friday night to continue working on the stone pad coming off the back porch. It is turning out nice. Thanks Ed!!!
I cut the grass/sod around our house Friday evening and left the other acres to cut the next day. However when I went to cut the rest of the grass on Saturday, we found our mower/tractor had been stolen! We made a police report but probably won't see it again. I did though find a FEDEX delivery at my front door. I received a gift certificate from Lily & Ava, our granddaughters for Spa Sydell. Thank you girls! Granny Carol loves you!!!
Saturday my sons, Mark & Jordan came to the house and pressure washed our back porch & outdoor furniture for us. It is clean now and looks so much better. Thanks boys! I couldn't have done it without you. You 2 mean so much to me! Love you!
We then grilled out Saturday evening and Sarah & Cheryl joined us. The pork tenderloin could have melted in your mouth. It was so good! Later we sat around the fire pit with a fire listening to music and watching the stars in the sky. It was a beautiful clear and cool night! We had Joe bundled up with a stocking cap for his head and blankets to keep him warm and comfortable. We ended the evening with our theme song, I'm Alive................
Sunday morning, we fixed a family favorite breakfast casserole & biscuits. For Mother's Day Mark, Jordan & Sarah gave me a gift certificate to pamper myself at Flaunt, a local spa salon in Covington! Thank you so much! I love you!
Before the kids left Sunday, Joe had Sarah make a large sign and staked it at the edge of the road in front of the house that reads "I Have A Brain Tumor. Bring My Mower Back!"
Hope all you Mothers had as good of a Mother's Day as I had! I sure won't forget it! It was the best!
Love you Mark, Sarah, Jordan, Lindsey, Christopher, Shane, Heather, John, Lily & Ava!!
Carrie Ann & Bobby spent the night with us last Tuesday and brought dinner. Carrie Ann can put together a mean pot roast with the trimmings! It was sooooo good! I introduced Carrie Ann to Papa Joe's famous margaritas. Just like all who have tried them, Carrie Ann could not stop at one either. :) It was a good evening.
Wednesday Bobby & Carrie Ann were Joe's caregivers. Treatment went well with no hiccups. Thank you both!
Friday Cheryl was Joe's caregiver. Treatment went fine. Dr Crocker found out that the MGMT analysis had not been sent off yet from the biopsy. Long story but he got it rolling for us and we should have the results in a couple weeks. The analysis will tell us if Joe's system will be more accepting of the treatment(s) or not so much. It deals with the chromosomes/genetics. You have to read about it to better understand it because it's too hard for me to explain. It overall is the research aspect to help answer the hows and whys of brain tumors.
After treatment, Cheryl helped Joe take Josie to the Vet to get her shots up to date. Thank you Cheryl for everything you have done! You are the greatest!
Ed came by Friday night to continue working on the stone pad coming off the back porch. It is turning out nice. Thanks Ed!!!
I cut the grass/sod around our house Friday evening and left the other acres to cut the next day. However when I went to cut the rest of the grass on Saturday, we found our mower/tractor had been stolen! We made a police report but probably won't see it again. I did though find a FEDEX delivery at my front door. I received a gift certificate from Lily & Ava, our granddaughters for Spa Sydell. Thank you girls! Granny Carol loves you!!!
Saturday my sons, Mark & Jordan came to the house and pressure washed our back porch & outdoor furniture for us. It is clean now and looks so much better. Thanks boys! I couldn't have done it without you. You 2 mean so much to me! Love you!
We then grilled out Saturday evening and Sarah & Cheryl joined us. The pork tenderloin could have melted in your mouth. It was so good! Later we sat around the fire pit with a fire listening to music and watching the stars in the sky. It was a beautiful clear and cool night! We had Joe bundled up with a stocking cap for his head and blankets to keep him warm and comfortable. We ended the evening with our theme song, I'm Alive................
Sunday morning, we fixed a family favorite breakfast casserole & biscuits. For Mother's Day Mark, Jordan & Sarah gave me a gift certificate to pamper myself at Flaunt, a local spa salon in Covington! Thank you so much! I love you!
Before the kids left Sunday, Joe had Sarah make a large sign and staked it at the edge of the road in front of the house that reads "I Have A Brain Tumor. Bring My Mower Back!"
Hope all you Mothers had as good of a Mother's Day as I had! I sure won't forget it! It was the best!
Love you Mark, Sarah, Jordan, Lindsey, Christopher, Shane, Heather, John, Lily & Ava!!
Saturday, May 8, 2010
Friday, May 7, 2010
The week has been a hard one. But before I say anymore I want to thank Christopher once again for being Joe's caregiver on Tuesday. Also I want to thanked Carrie Ann & Bobby too for being Joe's caregiver on Wednesday.
We could not have gone through the radiation treatment the past 5-6 weeks without each and every one of you who volunteered your time to be Joe's caregiver. This has helped Joe in so many ways but most of all he was able to spend the time with each of you. It also helped me in allowing me to work and maintain my job. Thank you!
So as far as how the week has gone.................it has been some long & emotional days & nights.
Joe's labs this week showed that his platelets have dropped some more. After discussing with Dr Voloschin yesterday we will get Joe's labs next week and if they are the same or lower, Joe will stop the clinical trial drug. If his platelets increase we will know that the trial drug was probably the cause of the lowering platelets. Then that will allow the platelets to increase and he will take the chemo drug with the maintenance plan of 5 days per month at a higher dosage. If the platelets do not increase then we will discuss another type of chemo therapy drug.
I told you that the MRI was scheduled for June 7th and we have now scheduled the results appointment for June 8th with both doctors.
As you all know last weekend resulted in Joe increasing his steroid dosage. The newest side effect has been behavioral such as irritability. Christopher & I got to experience it this
week:( The fatigue has increased alot due to the radiation. He has lost more weight.
Joe & I were at Emory from 9:30am to 2:30pm yesterday. Part of the reason for the long day was the radiation machine had a motor problem! By the end of the day, it was evident that Joe was the most fatigued I had seen so far.
We could not have gone through the radiation treatment the past 5-6 weeks without each and every one of you who volunteered your time to be Joe's caregiver. This has helped Joe in so many ways but most of all he was able to spend the time with each of you. It also helped me in allowing me to work and maintain my job. Thank you!
So as far as how the week has gone.................it has been some long & emotional days & nights.
Joe's labs this week showed that his platelets have dropped some more. After discussing with Dr Voloschin yesterday we will get Joe's labs next week and if they are the same or lower, Joe will stop the clinical trial drug. If his platelets increase we will know that the trial drug was probably the cause of the lowering platelets. Then that will allow the platelets to increase and he will take the chemo drug with the maintenance plan of 5 days per month at a higher dosage. If the platelets do not increase then we will discuss another type of chemo therapy drug.
I told you that the MRI was scheduled for June 7th and we have now scheduled the results appointment for June 8th with both doctors.
As you all know last weekend resulted in Joe increasing his steroid dosage. The newest side effect has been behavioral such as irritability. Christopher & I got to experience it this
week:( The fatigue has increased alot due to the radiation. He has lost more weight.
Joe & I were at Emory from 9:30am to 2:30pm yesterday. Part of the reason for the long day was the radiation machine had a motor problem! By the end of the day, it was evident that Joe was the most fatigued I had seen so far.
Monday, May 3, 2010
David was Joe's caregiver today. They had the rain to deal with as far as traffic today. They left a little early to compensate for this and ended up having to wait on radiation staff because they had a flood in the department that they had to deal with. Joe had a new Tech today that will finish out the treatments with him. Joe is down to 7 treatments left of radiation!!!
David brought Joe home instead of taking him to work. The fatigue is increasing now that he is into the 5th week of radiation. Thank you David for all your help today including checking on our pressure washing starting up ok for what I need to use it for this coming up weekend. Thank you!!!
Christopher is here tonight spending his usual Monday night for caregiver duties tomorrow. We met in town at Amici's for pizza. It sure was good but I don't think Dr Lanclos would have been happy. Do you think, Lisa?!?! Probably not!
Carol
David brought Joe home instead of taking him to work. The fatigue is increasing now that he is into the 5th week of radiation. Thank you David for all your help today including checking on our pressure washing starting up ok for what I need to use it for this coming up weekend. Thank you!!!
Christopher is here tonight spending his usual Monday night for caregiver duties tomorrow. We met in town at Amici's for pizza. It sure was good but I don't think Dr Lanclos would have been happy. Do you think, Lisa?!?! Probably not!
Carol
Joe did end up sleeping the majority of the day on Saturday. Cheryl brought dinner and spent some time with us. She also did a little grocery shopping for me. Thank you Cheryl!
On Sunday morning he got up with a little nausea but not as bad as Saturday. We worked through that and later in the morning was able to have a good breakfast, coffee & a long conversation..............
We were suppose to go see my parents Sunday but instead they came to see us. Dad brought me Publix's carrot cake because he knows how much I love it and his homemade broccoli soup. Yummy Dad! I love you both so much!
We ended the weekend Sunday night with sitting out on our covered back porch, a good rain breeze in the air, candles burning & some of our favorite music playing. I had Joe all bundled up in a blanket cause he tends to get cold now days. He really was in his own little safe haven chilling out to the music and singing along! We played the song over and over Kenny Chesney's I'm Alive (with Dave Matthews). We have made it our theme song for this journey we are on.................
So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me, I'd like to thank my lucky stars that I'm alive and well...
It'd be easy to add up all the pain
And all the dreams you sat and watched go up in flames
Dwell on the wreckage as it smolders in the rain
But not me...I'm alive
And today you know that's good enough for me
Breathin' in and out's a blessing can't you see
Today's the first day of the rest of my life and I'm alive
And well...I'm alive and well
The stars are dancin' on the water here tonight
It's gonna fall a soul when there's not a soul in sight
This boat has caught its wind and brought me back to life now
I'm alive and well...
And today you know that's good enough for me
Breathin' in and out's a blessing can't you see
Today's the first day of the rest of my life and I'm alive
And well...I'm alive and well
On Sunday morning he got up with a little nausea but not as bad as Saturday. We worked through that and later in the morning was able to have a good breakfast, coffee & a long conversation..............
We were suppose to go see my parents Sunday but instead they came to see us. Dad brought me Publix's carrot cake because he knows how much I love it and his homemade broccoli soup. Yummy Dad! I love you both so much!
We ended the weekend Sunday night with sitting out on our covered back porch, a good rain breeze in the air, candles burning & some of our favorite music playing. I had Joe all bundled up in a blanket cause he tends to get cold now days. He really was in his own little safe haven chilling out to the music and singing along! We played the song over and over Kenny Chesney's I'm Alive (with Dave Matthews). We have made it our theme song for this journey we are on.................
So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me, I'd like to thank my lucky stars that I'm alive and well...
It'd be easy to add up all the pain
And all the dreams you sat and watched go up in flames
Dwell on the wreckage as it smolders in the rain
But not me...I'm alive
And today you know that's good enough for me
Breathin' in and out's a blessing can't you see
Today's the first day of the rest of my life and I'm alive
And well...I'm alive and well
The stars are dancin' on the water here tonight
It's gonna fall a soul when there's not a soul in sight
This boat has caught its wind and brought me back to life now
I'm alive and well...
And today you know that's good enough for me
Breathin' in and out's a blessing can't you see
Today's the first day of the rest of my life and I'm alive
And well...I'm alive and well
Saturday, May 1, 2010
Wanted to thank Scott for taking Joe to treatment yesterday. Thank you!
Yesterday Joe had a headache(the first). It was a dull headache and not in any one spot. As we got into the evening he still had it and he became very weak in his legs. He had to have my help to walk. I called the physician on call and went over all symptoms. He has increased the steroid dosage and was to contact Dr Crocker today to advise for approval and then get back to me.
He had a restless night last night. He got up this morning with legs still weak & the headache. He also had his first episode of nausea & vomiting. He eat some dry toast, took a nausea pill and took a mild pain killer that the docs had prescribed in case needed. He has slept most of the day so far.
Carol
Yesterday Joe had a headache(the first). It was a dull headache and not in any one spot. As we got into the evening he still had it and he became very weak in his legs. He had to have my help to walk. I called the physician on call and went over all symptoms. He has increased the steroid dosage and was to contact Dr Crocker today to advise for approval and then get back to me.
He had a restless night last night. He got up this morning with legs still weak & the headache. He also had his first episode of nausea & vomiting. He eat some dry toast, took a nausea pill and took a mild pain killer that the docs had prescribed in case needed. He has slept most of the day so far.
Carol
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