Yesterday was like John wasn't sick at all. I absolutely love these days. He went to lunch with his friend Jeff and after lunch they decided to go fishing. Wow! John must have been in his glory.
He was out, with his friend, fishing, just like the good old days. John gets home around 3ish to greet me with a knee full of scrapes! Yikes! John! Not good. John is on a blood-thinner now, in addition to his regular meds. The main thing is John is suppose to be extremely cautious not to get any infection of any kind. I am in a little bit of a panic now, scared his cuts may get infected.
I cleaned it as much as he would allow me to (of course it hurt), I put some antibacterial ointment on it and crossed my fingers.
I know John wants to act and be as normal as possible, but he needs to keep in mind, he cannot get any type of infection. This could be bad.
I hate the days before treatment, because he really does act normal, like he is not sick at all. Can do things just like he did before he got sick. Then treatment day comes and knocks him down a few pegs, not too bad, but bad enough where he gets tired quicker, doesn't feel like he can do much. By the time day 4 after treatment comes, he is exhausted by everything he does.
Day 5, he knows, no more prednisone, not good....here comes "Withdrawal Will" (as you can see I am not a big fan of "Will", he is mean! I keep on having to tell myself, "John is still in there somewhere, he should be back in a couple of days"
This sickness has changed our lives in so many ways, it makes you look at things in a totally different light. You come to find out who your true friends are. Who will stick by you no matter what. Family, can't say enough...lucky to have such a great one!
Wednesday, August 12, 2009
Monday, August 10, 2009
The weekend...August 8th and 9th
I can't believe how John is doing, it really makes me happy to see him up and out and about.
This weekend was yet another great weekend!
Friday, John went to his sister's for the day, and ended up staying for dinner that night. I had to work, I didn't end up going. I wanted John to have some family time. I think he needed it.
He didn't come home until 10:00 pm! He had such a good time! So nice to see that smile! Fills my heart with joy for him.
Saturday, John and his brother went to my sister's house to help her put together her TV stand and hook up her brand new TV! Sweet! John was there for the entire day. Kevin drove back to his house to drop himself off and then John drove home! Yes! John is driving! He feels just that good! (we are not getting crazy, he drives short distances only)
We had another "Sunday Funday" with my sister, me, my sister and John went sofa shopping.
John did not need to use the wheelchair or anything, he walked each store we went to. Unbelievable! He did end up buying a leather sofa for the living room, really nice leather, really sharp looking, it is going to look really nice in the living room. Now we need to sell the sofa that we are using now, (by Sunday!) the new sofa is being delivered on Sunday.
John has been on Craig's List all day today, keeps him busy, and we need to get some stuff on the site to sell. We have so many things that we just don't use or we just don't have room for anymore.
John has been having his moments, I think he gets scared, and snaps at me or the dog sometimes. He does catch himself and his mood goes from snappy to happy.
It is so stressful, and tiring all at the same time trying to keep everything organized, keep the laundry going and done, keep the house clean, keep John's pills and appoints on schedule.
I will have to say, I am pleasantly surprised when dinner is ready when I get home. I am glad he has decided to take an interest in cooking. Let's just hope he stays with it.
Ha! I just got off the phone with him, asked him what he had planned for dinner, he said he wasn't really all that interested in cooking tonight...ahhhhh.....soooo soon....he is already starting to lose interest!?! I hope not...
This weekend was yet another great weekend!
Friday, John went to his sister's for the day, and ended up staying for dinner that night. I had to work, I didn't end up going. I wanted John to have some family time. I think he needed it.
He didn't come home until 10:00 pm! He had such a good time! So nice to see that smile! Fills my heart with joy for him.
Saturday, John and his brother went to my sister's house to help her put together her TV stand and hook up her brand new TV! Sweet! John was there for the entire day. Kevin drove back to his house to drop himself off and then John drove home! Yes! John is driving! He feels just that good! (we are not getting crazy, he drives short distances only)
We had another "Sunday Funday" with my sister, me, my sister and John went sofa shopping.
John did not need to use the wheelchair or anything, he walked each store we went to. Unbelievable! He did end up buying a leather sofa for the living room, really nice leather, really sharp looking, it is going to look really nice in the living room. Now we need to sell the sofa that we are using now, (by Sunday!) the new sofa is being delivered on Sunday.
John has been on Craig's List all day today, keeps him busy, and we need to get some stuff on the site to sell. We have so many things that we just don't use or we just don't have room for anymore.
John has been having his moments, I think he gets scared, and snaps at me or the dog sometimes. He does catch himself and his mood goes from snappy to happy.
It is so stressful, and tiring all at the same time trying to keep everything organized, keep the laundry going and done, keep the house clean, keep John's pills and appoints on schedule.
I will have to say, I am pleasantly surprised when dinner is ready when I get home. I am glad he has decided to take an interest in cooking. Let's just hope he stays with it.
Ha! I just got off the phone with him, asked him what he had planned for dinner, he said he wasn't really all that interested in cooking tonight...ahhhhh.....soooo soon....he is already starting to lose interest!?! I hope not...
Friday, August 7, 2009
TEST RESULTS
I have to sit and wonder to myself, what people are truly thinking.
John calls his doctor this morning (9:30 ish) to discuss his test results and to discuss what happen the night before in regards to leaving a message like that on some one's answering machine, and why wasn't a phone call made to his cell phone.
John gets in touch with his nurse, he explains what he encountered, and of course he gets the "I'm sorry". Sorry doesn't cut it sister. This is someones life you are dealing with. This is not a !@$ game! She tells John to tell me not to give him the shot, she wants to be sure that is what he is suppose to be getting. Again, are you !@#$% kidding me?! He was told via ANS MACHINE that was the drug that was to be administer and again at the hospital last night. COME ON!
John asks to speak with his doctor and of course, he is not available. She will leave a message for him to call him back. She will have to call him back too, she needs to confirm the medication.
It is 12:15 pm, I am leaving for work and suggest to John to call the Fain Center again, he can't wait on this shot. I go to work and get a phone call at 2:30 pm from John, he spoke to a different nurse who told John the doctor apologizes, he can't come to the phone, but your CT Scan is great and he is going in the right direction. WHAT?! The nurse asked John if he took his shot, he told her, no. Jenn (John's nurse) told him not to, she needed to confirm that was the right medication. The nurse on the phone comps and attitude with John and tells him he needs to take his shot before it gets to late in the day. He needs to take 2 shots, 12 hours apart. John is furious. Can't say that I blame him. YOU HAVE CANCER, YOUR DOCTOR HAS YOUR CT SCAN RESULTS THAT ARE SUPER IMPORTANT, AND YOU DON'T HAVE TIME TO COME TO THE PHONE?! Not good. John has 2 more chemo treatments left. John needs 2 treatments and then another scan. John really needs to get a new doc and have his results sent to Dr. Jacobsen at Dana Farber.
I just got off the phone with John, he is on his way to Gina's house to search for a new doctor.
This is getting out of hand...John shouldn't have to deal with this. Isn't it bad enough he has this horrible disease!? ...I hate this...
John calls his doctor this morning (9:30 ish) to discuss his test results and to discuss what happen the night before in regards to leaving a message like that on some one's answering machine, and why wasn't a phone call made to his cell phone.
John gets in touch with his nurse, he explains what he encountered, and of course he gets the "I'm sorry". Sorry doesn't cut it sister. This is someones life you are dealing with. This is not a !@$ game! She tells John to tell me not to give him the shot, she wants to be sure that is what he is suppose to be getting. Again, are you !@#$% kidding me?! He was told via ANS MACHINE that was the drug that was to be administer and again at the hospital last night. COME ON!
John asks to speak with his doctor and of course, he is not available. She will leave a message for him to call him back. She will have to call him back too, she needs to confirm the medication.
It is 12:15 pm, I am leaving for work and suggest to John to call the Fain Center again, he can't wait on this shot. I go to work and get a phone call at 2:30 pm from John, he spoke to a different nurse who told John the doctor apologizes, he can't come to the phone, but your CT Scan is great and he is going in the right direction. WHAT?! The nurse asked John if he took his shot, he told her, no. Jenn (John's nurse) told him not to, she needed to confirm that was the right medication. The nurse on the phone comps and attitude with John and tells him he needs to take his shot before it gets to late in the day. He needs to take 2 shots, 12 hours apart. John is furious. Can't say that I blame him. YOU HAVE CANCER, YOUR DOCTOR HAS YOUR CT SCAN RESULTS THAT ARE SUPER IMPORTANT, AND YOU DON'T HAVE TIME TO COME TO THE PHONE?! Not good. John has 2 more chemo treatments left. John needs 2 treatments and then another scan. John really needs to get a new doc and have his results sent to Dr. Jacobsen at Dana Farber.
I just got off the phone with John, he is on his way to Gina's house to search for a new doctor.
This is getting out of hand...John shouldn't have to deal with this. Isn't it bad enough he has this horrible disease!? ...I hate this...
CT Scan
John went for his CT Scan yesterday, this was a very important day. This scan is going to tell us if the cancer has spread to any other part of his body. He went to have the test done at 12:30 pm, after the test was done John went to the Fain Ctr for blood work and to speak with his doctor about the test results (or so we thought). We arrive at the Fain Center at 2:20 pm, his sister Gina met us there, (6 sets of eyes and ears are better than 4). John checks in with his nurse and proceeds to get his blood work done,Gina and I wait in the waiting room, about 15 minutes goes by and John is coming down the hall with a disappointing face, my heart sinks. John tells Gina and me that he did not get his results, it was just blood work today, a miscommunication in the dates and times. Odd. I could have sworn it was said, by whom I am not sure, that John would have his test results the same day of the testing. John's nurse told him he would not have the results for another 2 days. Not good. The waiting is the worst, especially with something of this nature. John, Gina and I leave the hospital and tell ourselves tomorrow is another day, we will call the doctor then to try and get the results.
John and I decided it is still early in the afternoon, we can run some errands and go pick Oliver at my sister's. We run all of our errands, grab something to eat and go to my sister's to pick up Oliver. We come home and there is a message on the ans machine "John, this is Sharon from the Fain Center, the CT Scan showed a blot clot in one of your veins, you need to come back to the Fain Center so we can administer Lovenox. WHAT?!?
First of all why in the world would you leave a message like that on an ans machine?!
Second WHY DIDN'T THE NURSE CALL JOHN'S CELL PHONE!?! If it is a BLOOD CLOT - THAT IS PRETTY SERIOUS!!NEEDS IMMEDIATE ATTENTION!!
John and I don't know what do to, we are in a panic. I call the Emergency Call Center (yeah right!), never get a nurse or a doctor the first phone call. Always have to wait. Yeah, NOT THIS TIME. I called once, no response in a 1/2 hr, called again until I got someone on the phone. Of course, the nurse tells John, get to the hospital ASAP! Off the the hospital we go, 9:00PM. Get to the ER, the nurse already knows John CANNOT wait in the ER - NEVER MIND SWINE FLU PEOPLE!! HELLO John's IMMUNE SYSTEM IS AT AN ALL TIME LOW!!! The registering nurse was a bitch, thank god for the nurse that was sitting there and had already spoke to John. We get into a room, wait 5 HOURS!!! Before a doctor comes in. John explains the events that occurred that day, and asked the doctor to get the CT results, which she did. They are clean? Who can read that test, besides a doctor? The doctor explained John would have to speak to his doctor about the results. He does have a minor clot in his groin area. He would have to get a shot in his belly 2X's a day for the next 5 days. Seriously!? What in the world is going on?!? It seems like the left doesn't know what the right is doing. It really looks very unprofessional. We are disgusted at this point. To add to this debacle, I notice at the bottom of the typed report, the nurses name...Sharon, Fain Center, time: 2:20 PM. ARE YOU !@#$% KIDDING ME?! WE WERE AT THE FAIN CENTER AT 2:20 PM! Come on, this isn't right. We are furious to say the least. Didn't go to bed until 1:30 a.m.
John and I decided it is still early in the afternoon, we can run some errands and go pick Oliver at my sister's. We run all of our errands, grab something to eat and go to my sister's to pick up Oliver. We come home and there is a message on the ans machine "John, this is Sharon from the Fain Center, the CT Scan showed a blot clot in one of your veins, you need to come back to the Fain Center so we can administer Lovenox. WHAT?!?
First of all why in the world would you leave a message like that on an ans machine?!
Second WHY DIDN'T THE NURSE CALL JOHN'S CELL PHONE!?! If it is a BLOOD CLOT - THAT IS PRETTY SERIOUS!!NEEDS IMMEDIATE ATTENTION!!
John and I don't know what do to, we are in a panic. I call the Emergency Call Center (yeah right!), never get a nurse or a doctor the first phone call. Always have to wait. Yeah, NOT THIS TIME. I called once, no response in a 1/2 hr, called again until I got someone on the phone. Of course, the nurse tells John, get to the hospital ASAP! Off the the hospital we go, 9:00PM. Get to the ER, the nurse already knows John CANNOT wait in the ER - NEVER MIND SWINE FLU PEOPLE!! HELLO John's IMMUNE SYSTEM IS AT AN ALL TIME LOW!!! The registering nurse was a bitch, thank god for the nurse that was sitting there and had already spoke to John. We get into a room, wait 5 HOURS!!! Before a doctor comes in. John explains the events that occurred that day, and asked the doctor to get the CT results, which she did. They are clean? Who can read that test, besides a doctor? The doctor explained John would have to speak to his doctor about the results. He does have a minor clot in his groin area. He would have to get a shot in his belly 2X's a day for the next 5 days. Seriously!? What in the world is going on?!? It seems like the left doesn't know what the right is doing. It really looks very unprofessional. We are disgusted at this point. To add to this debacle, I notice at the bottom of the typed report, the nurses name...Sharon, Fain Center, time: 2:20 PM. ARE YOU !@#$% KIDDING ME?! WE WERE AT THE FAIN CENTER AT 2:20 PM! Come on, this isn't right. We are furious to say the least. Didn't go to bed until 1:30 a.m.
Wednesday, August 5, 2009
Prednisone, friend or foe?
John has been off of his Prednisone for two days now. He went from 120 mg to 0.
Day one (Monday) was ok, not too bad, mood swings were definitely there, but not as bad as day two (Tuesday).
Day two, started off pretty good, and then went downhill. It is really hard to tell and to say when the "horns" are going to start to come out of John's head.
I had to work all day yesterday, I spoke with him a few times, the few times I did speak with him he sounded fine. He drove yesterday! YEAH! He went to lunch with his Mom and then went to her house for a little bit, picked up some recipe books from her so he can start to really cook.
That is his new hobby...cooking. He seems to really be interested in it.
When I came home from work last night he was making steak, mashed potatoes and a wine/mushroom sauce, it looked delicious. And then..."Withdrawal Will" came out...it was just a matter of time.
John went out back to start the gas grill, and of course, there was only a little bit of gas left. Now the "Storm of Withdrawal Will" has set in. The yelling of "WHY ISN'T THERE ANY GAS IN THE GRILL!" "WHY DIDN'T YOU TELL ME?"
(like that is what I do on a daily basis is check on the gas in the gas grill)
I took a deep breath, walked back in the house and closed the door.
He proceeds to follow me in the house and finish the steaks on the stove, which was fine, they tasted just as good, the sauce was fine, the potatoes were fine, everything was fine....not to John. He just thought dinner was ruined because he had to finish the steaks on the stove, let's not even get started on the wine/mushroom sauce...the emotion switch flicks back up....and John is back "Withdrawal Will" is gone, but just for a moment...don't blink Cathie, he could come back....it's only a matter of time.....
And that was dinner on Tuesday.
Symptoms of Withdrawal From Prednisone
Prednisone withdrawal symptoms can include but are not limited to:
A general ill feeling
Muscle weakness
Nausea and vomiting
A fever
Low blood pressure (hypotension)
Dehydration
Mental changes
Muscle pain or joint pain
Flaky or peeling skin
Difficulty breathing
Loss of appetite.
Day one (Monday) was ok, not too bad, mood swings were definitely there, but not as bad as day two (Tuesday).
Day two, started off pretty good, and then went downhill. It is really hard to tell and to say when the "horns" are going to start to come out of John's head.
I had to work all day yesterday, I spoke with him a few times, the few times I did speak with him he sounded fine. He drove yesterday! YEAH! He went to lunch with his Mom and then went to her house for a little bit, picked up some recipe books from her so he can start to really cook.
That is his new hobby...cooking. He seems to really be interested in it.
When I came home from work last night he was making steak, mashed potatoes and a wine/mushroom sauce, it looked delicious. And then..."Withdrawal Will" came out...it was just a matter of time.
John went out back to start the gas grill, and of course, there was only a little bit of gas left. Now the "Storm of Withdrawal Will" has set in. The yelling of "WHY ISN'T THERE ANY GAS IN THE GRILL!" "WHY DIDN'T YOU TELL ME?"
(like that is what I do on a daily basis is check on the gas in the gas grill)
I took a deep breath, walked back in the house and closed the door.
He proceeds to follow me in the house and finish the steaks on the stove, which was fine, they tasted just as good, the sauce was fine, the potatoes were fine, everything was fine....not to John. He just thought dinner was ruined because he had to finish the steaks on the stove, let's not even get started on the wine/mushroom sauce...the emotion switch flicks back up....and John is back "Withdrawal Will" is gone, but just for a moment...don't blink Cathie, he could come back....it's only a matter of time.....
And that was dinner on Tuesday.
Symptoms of Withdrawal From Prednisone
Prednisone withdrawal symptoms can include but are not limited to:
A general ill feeling
Muscle weakness
Nausea and vomiting
A fever
Low blood pressure (hypotension)
Dehydration
Mental changes
Muscle pain or joint pain
Flaky or peeling skin
Difficulty breathing
Loss of appetite.
Tuesday, August 4, 2009
John is going to drive today!
I just got off the phone with John (for the 3rd time this morning), he is going to drive!
I am so happy for him. He has been going crazy just sitting around the house.
He checked his blood pressure and heart rate this morning, they were both good. He said his energy level today is at an all time high. I told him that is great - however, don't get crazy.
He said all he is going to do is go to his Mom's (she only lives like 3 blocks from our house), and then go to Border's Books, in Garden City. Again, not that far from our house, and he will be with his Mom. Whew!
I can hear the excitement in his voice, he can't wait to get out and drive his truck. I know he misses driving so much. I am so happy for him!
I am so happy for him. He has been going crazy just sitting around the house.
He checked his blood pressure and heart rate this morning, they were both good. He said his energy level today is at an all time high. I told him that is great - however, don't get crazy.
He said all he is going to do is go to his Mom's (she only lives like 3 blocks from our house), and then go to Border's Books, in Garden City. Again, not that far from our house, and he will be with his Mom. Whew!
I can hear the excitement in his voice, he can't wait to get out and drive his truck. I know he misses driving so much. I am so happy for him!
Monday, August 3, 2009
The weekend after chemo treatment...
John is getting better with each chemo treatment. This past weekend was yet another great weekend! :0) Friday I worked until 7pm and got home to a surprise dinner! John made chicken pittaca, it was so good, I was so happy to see him happy and to be able to do something. I know he must feel guilty at timeshe wants to do something, anything, even fix something stupid in the house, but he can't because his energy level is so low. Any hew, dinner was great!
HE EVEN CLEANED UP!!! We watched a movie together, did our usual flushing of his pic lines, and went to bed. Great night!
Saturday morning John decided he was going to go to his friend Gary's house. Gary was working in his yard, John said he was just going to watch. I was a little hesitant in him going, I know John he can't sit still, he will want to help Gary with whatever he is doing. I dropped him off at Gary's around 11ish, I went home and cleaned the house. This worked out great I can actually "clean-clean". It is hard when John is at home and I am trying to work around him with the vacuum cleaner and Windex (lol). I feel bad having to ask him to move all the time. I called John at around 2:30 ish to see how he was doing, he said he was good and he was ready to be picked up. We had his niece's birthday to go to at 4pm that afternoon. I was a little concerned John had exerted all of his energy at Gary's. I picked him up and took him home to get ready for the party, he seemed pretty good. We went to the party for 4, I think he was a little nervous, Kevin's (John's brother) in-laws would be at the party and other family and friends. I am sure it must be hard walking into a back-yard filled with people and them all staring at you wondering if you are ok, etc. It was good. John had to explain a few times to different people his condition and treatment. He appeared to be ok. I felt bad. Thank God for his family, they truly are great people! They make the hard road so much easier to face. We left around 8 pm
(I know, long day for John).
I decided on Friday I was ready to go out with my friends on Saturday night. It took everything I had inside of me to do so. I felt horrible leaving him, I wanted him to be able to come with me . I had a good time going out and meeting my friends, but I can't lie, it just wasn't them same without him by my side. Every time someone asked about him, I felt a big lump in my throat, I just wanted to break down and cry. I held my tears back until I got in my car to drive home. I couldn't get there quick enough and see him. When I finally got home, it seemed like I was never going to get there. I got inside and found him fast asleep in bed with Oliver, he looked so peaceful...my two angels asleep...
HE EVEN CLEANED UP!!! We watched a movie together, did our usual flushing of his pic lines, and went to bed. Great night!
Saturday morning John decided he was going to go to his friend Gary's house. Gary was working in his yard, John said he was just going to watch. I was a little hesitant in him going, I know John he can't sit still, he will want to help Gary with whatever he is doing. I dropped him off at Gary's around 11ish, I went home and cleaned the house. This worked out great I can actually "clean-clean". It is hard when John is at home and I am trying to work around him with the vacuum cleaner and Windex (lol). I feel bad having to ask him to move all the time. I called John at around 2:30 ish to see how he was doing, he said he was good and he was ready to be picked up. We had his niece's birthday to go to at 4pm that afternoon. I was a little concerned John had exerted all of his energy at Gary's. I picked him up and took him home to get ready for the party, he seemed pretty good. We went to the party for 4, I think he was a little nervous, Kevin's (John's brother) in-laws would be at the party and other family and friends. I am sure it must be hard walking into a back-yard filled with people and them all staring at you wondering if you are ok, etc. It was good. John had to explain a few times to different people his condition and treatment. He appeared to be ok. I felt bad. Thank God for his family, they truly are great people! They make the hard road so much easier to face. We left around 8 pm
(I know, long day for John).
I decided on Friday I was ready to go out with my friends on Saturday night. It took everything I had inside of me to do so. I felt horrible leaving him, I wanted him to be able to come with me . I had a good time going out and meeting my friends, but I can't lie, it just wasn't them same without him by my side. Every time someone asked about him, I felt a big lump in my throat, I just wanted to break down and cry. I held my tears back until I got in my car to drive home. I couldn't get there quick enough and see him. When I finally got home, it seemed like I was never going to get there. I got inside and found him fast asleep in bed with Oliver, he looked so peaceful...my two angels asleep...
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